Help Me Mummy!

I Don't Always Have The Answers

2011-09-09T17:42:00.000-07:00

It's been a rough week on the autism front. Or perhaps it hasn't been. Perhaps it is just me having a week in which I feel overwhelmed.

When Amy was diagnosed three years ago with ASD (autism spectrum disorder) words such as "high-functioning" were tossed around. It was implied that her autism was mild - not as bad as some. Which is true - it isn't. It was also hinted that she may even one day get to the stage in which her autism diminished or even disappeared. Really?

The heartbreaking reality of having a child with ASD that can hit hard at times is - it's for life. Some aspects of autism become more manageable over time. But other aspects don't seem to change and this really hit me this week.

It was Thursday morning and I was just dropping Amy off to school and on my way to work. The RTLB was there and said we needed to chat - now. It was a twenty minute conversation about some issues the school is experiencing at the moment. I felt as though I was meant to come up with a solution and for years I have done that - all throughout Amy's Kindy years and for almost two years at school. I have been there supporting, suggesting, and contributing with all the specialists that have been on board over the last three years.

But I'm exhausted and running out of ideas. I went to work after that meeting on Thursday and shed tears about Amy and autism being for life. This week it has felt like a life sentence for all of us.

I was under the impression that with early intervention, the school years would be easier. Yet even though we were lucky to have help from the time Amy was three and a half and she has progressed in leaps and bounds in some areas; so many challenges remain. I cannot say that life with a daughter who is six and a half with autism is any easier than what it was when she was three and a half.

Dare I admit that on that Thursday morning that when the tears fell, I just for a couple of minutes wondered what it would be like if Amy didn't have autism. I know parenting is not an easy ride for anyone. But the daily challenges Amy faces are hard on all of us.

There are the beautiful and proud moments. Like when Amy completed her jazz medal test on Tuesday this week. Independent at times, she requested that I not be in the room during her test (even though all the other parents were!). She did well and held it together. But got home and had a huge meltdown.

I have just written a long email to the RTLB with some further suggestions for the school stuff. It's all stuff that I feel they should know by now - repeated information. Earlier this week I rewrote a social story Amy's occupational therapist had written as it had words like"don't" in it which don't work well for a child with autism. These specialists are on board to help and sometimes I wish they could just sweep in and solve things for us. But sometimes even they are stumped and on occasion get it wrong - specialists with years of experience with children with autism.

Mothers Guilt is something I believe that comes with babies are soon as they are born. Mothers Guilt with a child with autism is there all the time for me. When I don't have the answers, I feel as though I have failed Amy. I'm meant to protect and guide her. But sometimes all I can do is manage autism on a day to day basis and hope for the best. I'm never sure what tomorrow will bring.

Borderline Days

2011-08-14T01:06:00.001-07:00

My husband and I have an expression for when Amy's behaviour is off-balance, she is on the edge of a meltdown and things feel as though they could blow - it's called "borderline."

Borderline Days are hard days. It's autism in full swing. It's about sensory overload, anxiety and restlessness. It's about our daughter not being comfortable in her our own skin and constantly wiggling and finding ways to ease her discomfort yet invariably nothing works. It's simply something that has to be ridden out.

We've learnt over the years that these days pass. Sometimes we have Borderline Weeks - and even Borderline Months. It's as though Amy's autism resets itself and we have to have two steps backwards in order to have another step forward.

Although many aspects of autism are triggered or at least amplified externally eg: such as in a noisy classroom, I strongly believe that a lot of autistic behaviour (at least with our daughter - as autism is different in every child), comes from within. Amy went on a playdate today in a borderline state and it didn't go so well. The outcome wasn't a surprise despite her being left with a family that understands the many faces of her autism. Most of the time Amy spends time with this family, there aren't issues. But on a Borderline Day it is a given that social interactions are difficult for Amy - even with those she knows really well. Typically I try to discourage playdates on borderline days. But sometimes Amy just wants to go!

It is almost as though when these Borderline Days hit, Amy changes somehow in a biological way. I can tell just by looking at her when she is in a borderline state - the colour is gone from her cheeks and it's almost as if she appears to be sick. In fact a headache will often be part of the package.

Borderline Days typically hit towards the end of the week. Luckily I have a job in which I usually work Monday - Wednesday so I'm available if Amy needs an afternoon or a day off school. Often I can preempt her behaviour and will not send her to school if she's obviously struggling.

However I did send her to school last Thursday - the first day back after the school holidays - knowing full well that Amy was in a borderline state. Her classroom teacher knows he can call me anytime and I will pick her up - and I do get the call from time to time to come and get her. But I didn't get a call and turned up at the end of the day to find out she'd had her first ever meltdown at school.

I partly felt bad about this - because as a parent - and especially as a parent of a child with autism - it is my job to look out for her. Yet at the same time I thought - as did her teacher - that it was good to see a meltdown in action at school as until now, her teacher (and other staff at her school) have only heard my version of a meltdown. I think the experience only reinforced to the teacher how crucial sensory diets and all the other things we put in place to manage Amy's autism at school are.

Amy has been at school for a year and a half and it has taken the school a while to get to know her as her version of autism (particularly the girl variety) is quite different to the autism they have seen in other students. I very much felt like the overprotective and anxious mother for quite some time as I fought to have several things put in place for Amy so school would not only be possible for her - but also positive.

Luckily since an RTLB (Resource Teacher: Learning and Behaviour) came on board this year who has a lot of respect and authority in the school; I am no longer fighting solo for Amy. Amy now has a teachers aide Monday - Friday for half an hour a day for one-on-one reading and writing. There is also an afternoon programme for kids who need a break from school. There are five children all up who attend including Amy and four out of the five appear to be autistic. This programme used to be twice a week and is now three times a week and Amy loves it.

Yet despite the one-on-one teaching time and the breaks three afternoons a week, attending school fulltime is still a big stretch for Amy. I always say that autism seems to come in cycles for us and so when we have a series of Borderline Days, we have to pull back and accept that in these times not a lot of homework will be done and some school will probably be missed. It is not worth it for anyone involved to push too much.

For Amy it's as though she comes with a certain amount of energy - kind of like those with chronic fatigue and sometimes she has even less to give out to the world than other times.

Borderline Days are exhausting for all of us. We've just had a Borderline Weekend and we are all shattered. But we've been through enough cycles to know these borderline episodes do pass and an energised, focused and chatty child will come out of the autism fog eventually.

Article published in the local paper

2011-04-21T21:37:00.000-07:00

I wrote the below article about autism/Autism New Zealand and it was published in The Nelson Mail on 21/4/11.

Support Vital Dealing With Autism

My six year old daughter has been invited to a birthday party. Typical in childhood? Not for my daughter, because she is autistic.

Previous birthday party invitations occurred because I knew the families and friendships have been carefully nurtured between my daughter and a couple of children.

So I just about shed a tear when my daughter was invited to a birthday party recently by a girl in her class as I had nothing to do with it. Ok truth be told; I wanted to jump for joy! It is a celebratory milestone around my daughter’s social development as she has struggled socially for most of her short life.

Although my daughter was born healthy, in her toddler years some differences became apparent. The older she got the more obvious those differences became. She was disinterested in other children and was non-verbal until the age of three. She communicated through her behaviour which sometimes was inappropriate and was typically misunderstood.

From the outside it was easy to write it off as bad behaviour. But underneath it all was a child who was overwhelmed socially, suffered from high anxiety and could only handle small doses of exposure to situations that were either noisy or unstructured.

Her undesirable behaviour limited our social interactions at a time when most children’s social worlds are expanding. When she was three and a half years old she was diagnosed with ASD – autism spectrum disorder.

At the time of receiving this diagnosis, I was given a booklet about Autism New Zealand, an incorporated society with charitable status. The booklet contained valuable information such as which services to go in the Nelson region for support and assistance as well as information about coffee group meetings that provide links to other families in Nelson/Marlborough with children and teenagers with autism.

I first started attending the local Autism New Zealand coffee group meetings three years ago. It was the coffee group I knew I belonged to as up to then my experiences of motherhood were significantly different to mothers of neurotypical children. My daughter didn’t reach many of the milestones dictated by parenting books out there. She didn’t sleep through the night until she was five years old. The beginnings of toilet-training were also significantly later and are still a work in progress.

Other children would play alongside each other as toddlers; my daughter would be off exploring the environment or would be fixated on a gadget. It has been incredibly reassuring being able to connect with parents – mainly Mums - who share many of the same challenges as I do.

We might only see each other at coffee group meetings every six weeks but touching base regularly is such an important, if not therapeutic, part of life with a child on the autistic spectrum. Our children are all different ages, and although they all have autism – no two children with autism are the same.

The coffee meetings are a great opportunity to update each other on our children’s progress, to vent if needed and to just meet up with parents who may be living with the same or similar challenges. There is also a lot of information on hand in the form of workshops and seminars which we are lucky to get in our region. Although one child in every hundred is diagnosed with autism, misunderstandings and a lack of knowledge prevail.

A lot of the time autism is stereotyped yet with autism there is no one size fits all. Classic autism is what often springs to mind when autism is mentioned. There is a fascination with it on the big screen, tele and in books - the autism where an individual is seemingly locked in his or her own world, while rocking in a corner. Movies such as Rain Man and television programmes such as The Big Bang Theory feature characters with Aspergers Syndrome – the kind of autism where intelligent but socially quirky individuals reside. These are two examples of autism but there are many different variations in between.

My daughter’s autism can be described as “high functioning”. She didn’t make the diagnosis for Aspergers Syndrome because her onset of speech was delayed. Being a girl puts her in the minority even within the autism arena as typically it is boys that are diagnosed. Although she is challenged socially, she is naturally social yet many think that autistic children aren’t social beings.

Other struggles are to do with sensory processing (she gets tired and overstimulated easily) and managing emotions (she rarely cries). She tends to internalise her emotions so it often appears as if she is doing just fine.

Living with a child with high functioning autism is a little like living with Jekyll and Hyde. Jekyll participates fairly well in class, progresses academically and is even beginning to make friends during her second year at school. Hyde comes home most days from school jaded, retreats into herself for an hour or two, and can have explosive meltdowns.

Her autism seems to go in cycles. She can have weeks or months of “doing well” – or at least holding it together in the neurotypical world. Then she regresses back to her first language – autism.

During the last three years there has been a team of specialists on board to help with behavioural issues and to ensure mainstream education works. As grateful as I am for the support, it does take a lot of extra time and energy to meet up with all the specialists.

Many strides forward have been made and without a doubt my daughter wouldn’t be doing as well as she is without all the help, but the challenges remain despite the best efforts to manage my daughter’s autism on a day to day basis. Autism is for life and it is important to connect with other families to gain hope and inspiration. That is why an organisation like Autism New Zealand is vital for families such as ours.

The Value of A Diagnosis

2011-03-05T18:28:00.000-08:00

Amy will be six years old in two weeks time. Amazing to think that it was three years ago, around Amy's third birthday, that we were in the beginning stages of getting a diagnosis for ASD (autism spectrum disorder). It was in August 2008 - almost six months later after going through several referrals, that she was officially given a diagnosis. We have been living a life very much dictated by autism since then so it seems quite timely to reflect.

Some are hesitant about getting a diagnosis - of labelling their children for fear of what a diagnosis will bring. I can say without a doubt three years on that getting a diagnosis was the best thing we could have done for Amy - and for us. Having a diagnosis has given us a way of explaining and understanding Amy's special needs - and her differences. It has opened us up to a world of specialists, given us a child disability allowance (not much - but things like private swimming lessons add up after a while), and respite care (for much needed dates for my husband and I). Amy went to RDA (riding for the disabled) for a year (aged four - five years old) - something she could have only done with a diagnosis.

It was definitely a positive that just as Amy was due to start Kindergarten; she received a diagnosis of ASD. This meant straight from the onset that we were able to access the help we were eligible to receive - the Ministry of Education were on board almost immediately and through the assessment of an early intervention teacher; Amy had a teacher's aide in her Kindy years. Her diagnosis meant her Head Teacher at her Kindy attended a local workshop on ASD -with my husband and I. This knowledge gained from the top filtered down to all the other Kindy teachers so that Amy was left in capable and understanding hands when I dropped her off at Kindy.

Thanks to early intervention, and the amazing two years I worked closely with our assigned early intervention teacher; Amy's transition into school also went well. Yes there have been issues at school over the last year yet because of a diagnosis I have been able to access and seek the support I needed to ensure as many of Amy's needs as possible are met at school. We currently have a Behavioural Specialist, an Occupational Therapist and an RTLB (Resource and Learning Teacher) on board. Amy is also still under the care of a Pediatrician.

It isn't always easy. Going down the road of choosing a diagnosis can be a lot of work. There is the time needed for on-going appointments with specialists, group meetings involved with all those that "work" with Amy from time to time, and constant contact with her classroom teachers, SENCO (special needs coordinator at the school) and on occasion, Principal. My relationship with the school is a lot more complicated than the parent of the neurotypical child.

There are also gaps sometimes in understanding and experience and part of being a parent of a child with special needs, is being their voice. Having a diagnosis adds validity to any discussions or negotiations. There can be a lot of repeating of information, justifying, explaining, and advocating to do with those in the educational sector. Some "battles" are won and some are lost - sometimes it seems you have to choose which ones need to be fought and which ones need to either be put on the backburner or binned. But having a diagnosis gives credibility to any issues that need to be sorted out - particularly when supported by professionals.

Being open with those in Amy's circle about her ASD requires a lot of time and energy. Yet I don't think there has ever been a negative in going down this route. The only wee set-back was when a social story written about her ASD for her class last year was read out and backfired when a couple of students got the wrong end of the stick and one child verbally bullied her for having a "different brain." It was a devastating experience for Amy and one she hasn't completely gotten over. But the sad reality is, she is prone to being teased/bullied- the irony is her first instance of significant bullying occurred because of something that was meant to be a preventative measure.

Having a diagnosis has helped greatly with the activities Amelia has participated in over the years - aside from RDA she has been involved in gymnastics, swimming lessons, and ballet. Teachers and instructors out there have varying degrees of experience with ASD but at least disclosing Amy's ASD gives them a heads-up that her ASD may need to be catered for.

We have chosen to reveal Amy's ASD to all who are in our circle - this includes extended family, friends and coworkers. I believe openness around a diagnosis can only increase understanding. In the early years since Amy has always come across as "high functioning" it was a tempting to sometimes think that her ASD was just a phase - that one day it would all pass. But as she approaches her sixth birthday, I know that she has ASD for life. Her challenges may decrease or at least be managed a lot more easily as she gets older - but her ASD will always be there. Sometimes I wish I didn't have to label her but her differences are more obvious the older she gets - it only seems fair that I continue to inform others so that she is treated with the respect and understanding she deserves.

As a mother of a child with ASD, I have been introduced to a whole new world and in particular a whole new circle of friends through Autism New Zealand. I have been going to local coffee group meetings for three years and am now on the committee locally. My membership with Autism New Zealand has been invaluable. Although we face parenting challenges like all parents; there are some on-going issues that only those who live with ASD would truly understand. Thanks to Autism New Zealand I have been to several workshops locally. There is nothing like attending a workshop run by an expert in the field of ASD to get the confirmation that your child's diagnosis is very real. Every time I attend a workshop I am so glad we went down the route we did - to seek a diagnosis. I know it was the right thing for us as a family.

The transition to school

2010-06-12T17:16:00.001-07:00

Amy is now at school. She turned five at the end of March and had two weeks at school, just attending until 1.30pm to give her a chance to settle in.

She is now over half-way through Term Two and is doing really well all in all. She does three full days a week: 9.00 - 3pm and two days a week she leaves at 1.30pm; essentially having the afternoons off. On Monday afternoons she goes to RDA (riding for the disabled) and on Thursdays she goes to private swimming lessons.

The two afternoons off a week seem to have been a good idea for Amy's first full term at school. She does get so very exhausted at school and it is good for her to do something outside of school such as horse-riding and swimming that doesn't tax her so much and in fact revitalises her.

It has been a very interesting process moving from Kindergarten into school. I feel as though I have been in transition myself, as a parent! Amy never got any ORRS-funding which was to be expected, since she is "high-functioning." However she did get a short-term teacher's aide for the first month at school - or at least - the first month in Term Two. It was only for half an hour a day, but it was something myself and the Ministry of Education proposed with the school as the one hour unstructured lunch-breaks seemed a long time for Amy - for a child who struggles socially and needs a lot of adult support in any social settings.

I gave the school as much information as I possibly could about Amy - her back-story, information sheets, and social stories. Visuals are in the classroom to assist with routine and scheduling.

Amy loves the structure of school - the repetition and the learning side of it. She loves her homework and is chuffed that she can now write her name and can read her readers when they come home! She challenges herself by reading more difficult books and reading some of her books at home.

When I pick her up at lunchtimes twice a week I get a chance to see what Amy is up to. She seems to have found her way for the most part with the lunch-break although she struggles with sitting with the whole school (300 children) to eat her lunch for a minimum of 15 minutes (before they are dismissed). Sometimes she barely touches her lunch. And just like at home, Amy can be resistant towards toileting.

Amy's best-friend is now in the same class (they are two months apart in age) and it has been great for Amy to have a good friend at school. It was also good to have a couple of months without her friend so that she had the opportunity to settle in and to get to know some of the other children. Sometimes she will appear to be a bit down about the socialising side of school and I have witnessed how much she struggles with small groups of kids at lunch several times. The same dynamic went on at Kindergarten. But one-to-one Amy seems to do just fine.

Amy puts herself on time-outs at school - she has a step she sits on at the back of the class or she sits at the computer. On occasion I have been called in to take her home as she has been so sensory-loaded; she hasn't been able to do much.

I really want to encourage some more independence with Amy and have some ideas up my sleeve around toileting/eating/socialising. She needs prompts and adult support in all these areas, but at the same time gets irritated by the reminders or the attempts to steer her in the right direction. I still have a team of specialists around who I am calling on right now to fine-tune these key areas.

Amy has just gone off for a play-date at her good friends house. A weekend of just being at home with her parents isn't enough for her now that she's settled at school, so it is time to start broadening her social horizons again - I will encourage Amy to invite some other children home from her class (on a one-to-one basis).

Working while managing a child on the spectrum

2009-12-04T13:49:00.000-08:00

I have always prided myself on being an at-home Mum. Right from the onset I wanted to be at home for my daughter during her precious early years in particular. I have however had a part-time job since Amy was six months old which has either been at night - or in the weekend - until six weeks ago. My latest job is during the week and is quite the challenge to fit into what was already a busy week.

When Amy was six months old I worked just once a week for three hours a night. Over the next two years this increased to two nights a week. It worked well. My husband would put Amy to bed and as she was an anxious child from the start and very much a Mummy's girl in her first year or so; it gave my husband and Amy a chance to form the beginning of a very strong bond. So although I naturally worried when I first returned to work, and even though the hours were very small; I knew that Amy was fine.

When Amy was three years old, around the time of going through assessments to get a diagnosis, I decided I really needed to work one full day a week. I wanted to let go of the night shifts as I'd started doing one or two other things during the week at nights and I was out a little too much. So working days seemed like the perfect solution. Not only that, Amy was on a waiting list for afternoon Kindy and wasn't going to get in til she was three and a half so I was looking after a child with ASD (even though she was undiagnosed, her ASD was obvious to me) seven days a week without a break - I was exhausted! Although I was leaving the house some nights, I was still her primary care-giver every day of the week and I needed a break. At three Amy wasn't particularly verbal and expressed her social frustrations by physically attacking other children. I spent many a time at Playgroup on tenderhooks as I "shadowed" her play while other Mums got to sit down and drink a cup of coffee and chat! It was not an easy time.

So I ended up getting a job - a Sunday job. I am still working there - it is in a gallery and provides me with the much-needed change-of-scene from the world of autism. The gallery is a creative environment, peaceful and I work sole-charge which suits me just fine! I only work six hours a week but have one full day out from family life and this has been great for me.

At the same time that I got my Sunday job I also joined a gym. I would recommend doing the two - getting a small part-time job and committing to regular exercise to any Mum of a child on the spectrum - in fact, they should be essential requirements for managing an ASD Mum's energy, sanity and well-being! All Mums are challenged of course - but us Mums with kids on the spectrum are often pushed beyond our limits. Living with a child on the autism spectrum requires so much patience, persistence and flexibility in parenting styles. I only have one child but I do know parents of more than one child find they cannot discipline their ASD child in the same way they do their typical children. A psychologist once said to a group of ASD parents that met for an informal evening chat that I went to that discipline does not apply to an ASD child. Obviously they need boundaries and lots of structure - but I find we guide Amy more than discipline her most of the time. She goes to her room for quiet time when she has misbehaved but even this method has backfired in recent weeks as during a meltdown she will physically throw sizeable objects against the door and we have to be warey of property damage, especially since we live in a rental property!

We've had some financial strain in our family this year so about six months ago I started looking for a second job that would fit in with Amy's Kindy hours. I finally got a job six weeks ago at a local college as an ACE (adult and community education) coordinator and have been juggling two jobs and the management of an ASD preschooler ever since. I am stretched.

I have heard several Mums of ASD children claim that they either cannot work at all or not much during the week because of the extra hours and "work" that is required with a child on the autism spectrum. For starters there are the appointments with "the team" of staff allocated to your child. For us Team Amy is made up of child development services, special education, a teacher's aide, a pediatrician, a respite carer, and the head teacher at Kindy. That is six people I have regular contact with and often have to repeat similar information to to keep everyone in the loop with Amy's changing needs. We are on a waiting list to see a psychologist so soon that will be seven people that make up Team Amy.

Since I have taken on a second job, which is by the way just ten hours a week; I have found it quite difficult to squeeze in appointments with those on Team Amy. I used to until six weeks ago be available whenever anyone on The Team wanted to phone, email or talk in person. Now they have to work in with me and it's always not so easy to fit them in as many of these appointments need to take place while Amy is at Kindy so we can have a decent chat. Right now I am working with Team Amy to go through the application for ORRS funding for Amelia's transition to school and it is time-consuming. Not only that, it is also emotionally taxing once again pre-empting the negatives that will no doubt crop up when Amy enters the school system.

Alongside the appointments with members of Team Amy is the time spent coming up with social stories and other resources to aid Amy. With my busy weeks I am finding it a challenge to come up with the extra time and energy required to keep things ticking along for Amy. Another challenge is feeling less tolerant and less patient with some of the aspects of Amy's ASD because I am so tired at the moment.

Amy has had sleep issues since she was a baby - which is not uncommon for a child on the spectrum. This is exaggerated when she goes through periods of feeling anxious. The older she geets, the longer the periods of time of Amy "sleeping-through." When she is unsettled and waking frequently it often coincides with a patch of constipation which is a heads up that Amy is in a highly anxious state. During these periods I often end up spending a bit of my night in bed with her. Disrupted sleep isn't the best for a job in which I am meant to be quite switched-on.

With my change in working hours Amy is at Kindy for longer periods of time and she has of course felt the longer mornings at Kindy. Just this week I picked her up at the gate in tears with her bag waiting for me at 12.30pm on the dot (the last possible time you can pick up your child). The good thing is after purchasing some excellent books on feelings - Trace Moroney's When I'm Feeling series - Amy is able to express what is going on. She has told me she has been missing me and that I am too busy. So we went through her weekly schedule (which is a laminated chart that is on the fridge outlining her weekly activities) and talked about each activity that she does. We ended up taking out one of her weekly playdates that wasn't working out anyway because of a personality clash; and added in Mummy Time.

I have heard some say that parents of ASD children aren't rich folk since so much time and energy goes into them. From early on I knew that daycare would not be the right place for my daughter. Her attachment issues were obvious even as a baby. She really wasn't ready to be at Kindy until the age of three. She will be going to school in the mornings only as she is incredibly exhausted after four hours at morning Kindy each day. Tony Attwood confirmed my feeling that ASD kids need lots of downtime at a recent seminar. On average, he claimed, a child with ASD needs an hour "off" to every hour of socialising. I believe Amy pretty much matches this formula.

All Amy's activities at the moment are immediately after Kindy so we can be home by 2pm every day to allow for a decent afternoon of decompressing. It seems to work really well. So for the first term or more at school Amy will attend just mornings and I will slowly stretch her out during the day so that her after-school activities shift to 2pm. I will probably keep a couple of after-school activities going all year so even when she is doing full days, til 3pm, she still gets to leave earlier a couple of days a week.

Tony Attwood also confirmed another feeling of mine that ASD children need lots of physical exercise to compensate for their overwhelming anxiousness and inability to monitor strong emotions. Not only do Amy's after-school activities help her unleash pent-up emotion; they also provide her with another opportunity to connect socially with others when kindy is challenging.

I guess the biggest thing around me working during the week has been this nagging feeling that I am letting down my little girl somehow. For so long she has been the main focus of my life. She still is - but now I am in a job that requires a lot of my energy and concentration - I have to put Amy aside for the ten hours I work a week. This is probably good for both her and I in the long-term. It is hopefully preparing us both psychologically and emotionally for school. But at the moment we are both adjusting to the change in schedule.

Kindy has helped Amy connect with other adults

2009-11-07T23:11:00.000-08:00

Amy is just blossoming at Kindy. It is now her third term at Morning Kindy with an ESW. She has been supported and encouraged in her social interactions with the other Kindy kids with her ESW and Kindy teachers. This has resulted in some strong bonds with the adults at Kindy as well as a noticeable growing confidence in socialising with children at Kindy. This term she has formed what has been descibed as her first "reciprocal" friendship with another girl. We plan to invite the girl round to our place for a play-date sometime soon.

Most days after Kindy Amy has an activity planned to help her decompress from her busy Morning. It has been lovely watching her make some strong adult connections with teachers outside of Kindy - something that would not have happened had Kindy not being such a positive and supportive place for her to be.

On Mondays she goes to RDA (riding for the disabled). It is her third term and she has gotten to know the staff that lead her around each week on either Cherry or Comet. There is a twelve year old girl in the same class that Amy is quite interested in.

On Tuesday after Kindy Amy goes to gymnastics. It's her second term this year going to gymnastics and she's doing really well. With the help of a social story she has learnt to follow instructions and keeps close to her group (as the class is split into two groups) understanding that her reward for partcipating in her class is free-time towards the end of the class. Amy sticks like glue to her instructor Karyn. She has a little joke each session where she hangs by one arm on the bars "like a monkey". She giggles in anticipation everytime that she is about to do it; making sure that Karen is watching!

On Thursdays this term Amy started swimming lessons. These are one-on-one sessions that are also going really well. I had been in the pool for previous swimming lessons so recognised the importance of a social story explaining that I would be on the side of the pool watching her. Her reward for concentrating in her class every week, as told in the social story, is a swim with Mum. Amy has developed a great bond with her swimming teacher Karen after just four short weeks. She has the willingness to try things in the pool she'd previously had a lot of angst around now. Just last week she put her head under the water to retrieve some toys from the bottom of the pool - both Karen and I's mouths dropped at that!!

In August we appointed Danielle as our respite-carer and that has been working out really well. Danielle is a trainee teacher at Amy's Kindy so it was great to have Danielle come on board as they obviously already knew each other. Kev and I go out for a "date" once a week which is about two and a half hours long while Danielle looks after Amy in our home. At first Danielle looked after Amy while she was asleep but with daylight saving we shifted our dates forward so that Danielle looks after Amy from 5pm. We are slowly weaning Amelia into having Danielle put her to bed at night by introducing Danielle reading her stories. We will use backward-chaining so that in a few weeks (hopefully!) Danielle will actually put Amy completely to bed.

Amy is a child who needs adults in close proximity to feel safe and secure in her world. Her Kindy have always acknowledged and appreciated this and so Amy has just increased in her confidence as the terms have gone by ; slowly needing less support in some areas such as toileting and eating at Kindy. Without a doubt the strong bonds she has with her ESW and Kindy teachers have assisted her in forming relationships with other adults in her life. This is truly remarkable for a child who just a couple of years ago was very selective around who she could be left alone with.

Loosening the umbricial cord

2009-10-18T22:33:00.001-07:00

I'm sure any mother of a child on the autism spectrum has perhaps a tighter grip than she would have with a regular or typical child. It can't be helped. As soon as there is a diagnosis or even before that - when it is apparent that your child comes from a different mold - it is only natural to want to wrap your darling in the biggest wad of cotton wool that you can find.

I have been doing this for most of Amy's life. Although she wasn't diagnosed with ASD until she was three and a half, I "got" that she needed close support from her mother night and day. So I gave it to her.

Amy's elevated anxiety levels were apparent when she was just a few months old. She didn't want anyone else apart from Mum, Dad or Nana to hold her. She had to get to know people well before it was okay for them to hold her. It was never pass-the-baby with Amy.

So it was Amy and I day and night through-out her babyhood, toddlerhood and for some of her preschool years. She was socialised within antenatal coffee groups, music classes and at the local playgroup as a baby and I set up regular playdates for her at the age of eighteen months.

Yet socialising wasn't her priority. Although Amy enjoyed being out - it was the environment that interested her rather than the people in it. Often at antenatal class get-to-gethers Amy would wander off exploring the home we were in as the other kids checked each other out.

When Amy reached three years old it was apparent that her social skills weren't natural. She was a late talker and this only frustrated her in her interactions with others. This is when I started the progress of getting a diagnosis.

Amy has come a long, long way in the eighteen months she has been at Kindergarten. She was in afternoon Kindy for six months and learnt a lot there about been in a large group of children and having to share her space and toys.

When Amy turned four she started Morning Kindy and she has been blossoming ever since. She is forming new friendships at Kindy - with and without support from the Kindy teachers.

School is just around the corner for Amy - next March - and myself, special education and her new entrant teacher for next year are going to meet soon to start planning for her transition to school. Although Amy's Kindy has an excellent Kindy-to-school transition programme; Amy will need a bit longer to warm up to her new environment. I have already decided that she will start school for the first term just doing mornings. As an ASD child; new environments take a lot of adjusting to so it's best to start small and to introduce school in chunks.

I have a lot of fear and anxiety myself (!) around Amy starting school. I am now on the local committee for Autism NZ Nelson/Marlborough and have had some insightful conversations with other parents on the committee. The bottom-line is: school will most likely be problematic at some point - it's just the way it is. We are talking about a child with social and emotional problems thrown into the mix with other children. I can pre-empt and prepare for some stuff - but I am going to have to foster my relationships with Amy's school for next year as I won't be around as much as I have been in the Kindy years - it's just the way it is at school.

Basically, the older Amy gets, the more I've had to loosen the umbricial cord. She is growing up, just like any other child. Interestingly; it is Amy who often calls the shots on how much space she wants from her dear old Mum. She has slept through the night for about five nights in the row recently - as in, in her own bed - alone!! This has happened before, off and on, for the last four plus years. The difference is - Amy is aware of sleeping in her own bed - and proud of it: "I slept all the way through!" Sure, she ended up in our bed for the night the night before last but I do believe something has shifted.

Sleeping-through the night has been a similar process to toileting. Amy needs to feel comfortable and ready to reach her milestones. It was clear from early on that toileting wasn't going to happen in two days or two weeks like it can with regular children. Star charts and bribery worked for about five minutes - Amy just wasn't convinced toileting was something she needed to participate in.

Amy is still what you call "habit-trained" as far as toileting goes - she needs lots of prompting and although she can use the toilet; often we have to slip a potty underneath her when she is zoned out and past doing it for herself. It has been a huge milestone for us to have her poo in a potty - at the age of four and a half. She now only wears a nappy at night which is huge progress - and occasionally the nappy is dry in the morning.

Toileting issues and ASD seem to go hand in hand. These kinds are a mix of being very determined and incredibly anxious which means toileting becomes one big mine-field. The only thing that works is just to take it at the child's pace.

I will be starting a second job next week. I currently work Sundays which is Daddy-daughter day and seems to work well. But as of next week I will be working three mornings a week, while Amy is at Kindy. I know she is settled at Kindy and doing well but I do have ASD-Mum anxiety around being a little less in contact with Kindy, having to drop her off at 8.30am because I have to get to work (some mornings are slow ones on the ASD front) and not being on call should something go wrong. I have never been called into Kindy and don't think it would happen but I have valued been "around" while Amelia was at Kindy - being able to pop back early if I knew something was happening at Kindy that might cause her anxiety, for example.

But, both Amy and I need to start practising for school. She will need to learn to lean on her new teacher at school - just as she does with her current Kindy teachers. Some Mums might get upset if their child cries at Kindy but I am relieved when I hear that 1. she cried - it means she was able to let go of some feelings immediately and not contain them and 2. sought comfort from a teacher - it means she has strong bonds with her Kindy teachers.

As Dr Phil says; we are raising adults - not children - that goes for children with ASD also. I want Amy to be independant, to be able to self-regulate her emotions, to like and love who she is, to follow her dreams in life and to have strong relationships with the people she cares about. Just the same wishes as any other parents. The only difference is we may experience a few more road-blocks or obstacles along the way than those of parents of regular children, that's all.

Tony Attwood

2009-10-04T21:48:00.000-07:00

The Friday before last I got an opportunity to go to a presentation by Tony Attwood. He is a clinical psychologist residing in Australia, who is very well-known in the autism field. He was very personable, interesting and certainly knows his stuff. The presentation was two hours long and was on Exploring Feelings: Cognitive Behaviour Therapy to manage anxiety, sadness and anger.

To be honest, it's taken me a good week to digest the two hours Tony Attwood presented. I have some ideas on how we might be able to build on Amy's emotional expression thanks to the presentation. I am also very grateful (once again) that she has intervention at such an early age. Tony Attwood empathised the importance of teaching the social and emotional stuff from Kindergarten age.

However, as per the last course I attended with an expert in the autism field (Celeste Littek),I came out with a high level of concern for Amy's future. The reality is, the difficulties she experiences in understanding social behaviour and processing emotions will impact her life greatly. Tony Attwoods course really was a heads-up that these kids on the spectrum who become teenagers and then adults with ASD or Aspergers are very likely to suffer from mood difficulties if they are not given the skills to cope with their social and emotional deficits.

Of course any child is at risk of turning to drugs or alcohol or developing an eating disorder as a way of coping with difficult emotions. All children need life skills - to be armed with coping mechanisms from an early age. I will certainly work on some of Tony Attwoods ideas such as creating a tool-box; ideas specific to Amy that help in the times she needs help decompressing.

Interestingly enough, today was one of those days in which Amy needed some guidance in letting go of the emotions that seem to overwhelm her. We're week two into the school holidays and it seems to be the way; sooner or later the lack of continual structure in the holidays gets to her. I have visual tools to help create structure in her day. In hindsight, not using those tools this morning didn't help things. Nor did telling my daughter we were going to visit a Kindy friend (that I was sure was home) then finding out that his family was probably still away on holiday. I know it is never wise to tell my ASD daughter of plans that could fall apart. Yet every now and then they do. And that's life. Sometimes it just doesn't go the way we hoped - I cannot wrap her up in cotton wool forever.

Mind you, when I made my second ASD boo-boo today and took my daughter, my neighbour and her newborn out to a teenage Mums group only to find it was closed in the holidays; I just about banged my head against a wall! Why didn't I phone?? Things do close-down in the school hols. For the second time today my daughter had anticipated going somewhere and it fell through - not good for an ASD child who is halfway through the school hols!

We ended up having afternoon tea with the neighbours - the same ones with the newborn and then all went for a walk to a nearby playground. Although Amy was able to let off some steam there she clearly was out of sorts. This was especially apparent by the time her dad came home from work. By the time she'd had her shower she was physically starting to attack us - a red flag that meltdown was on the way. I put her in her room on a time-out where she tried very hard to hold back the tears. It is extremely heart-breaking to hold the door shut on your four and a half year old as she fights back tears. She will actually say "Nope, nope, nope!" as the tears threaten to escape. She just does not like getting sad.

She had a similar meltdown on Saturday night - Amy refused to give in to her overwhelming emotions and had a semi-cry. Then around midnight she screamed and had a big cry in my arms. This is not a first and I am half-expecting the same will happen tonight.

Tony Attwoods talk was essentially about how ASD children have extreme difficulty managing anxiety, sadness and anxiety. Our daughter is the living evidence of that! Where one of her peers seems to cry at the drop of the hat; Amy will sometimes not cry for three weeks or more. She seems to cry less the older she gets which to be honest is a big concern as her mother. There are tools out there to encourage conversation about feelings - books written by Tony Attwood himself, visual aids of faces with various emotions and children's stories about emotions. After tonights ordeal I am very keen to order some of these books and tools to help Amy in all this.

A mental health day - for a four year old

2009-09-13T00:13:00.000-07:00

On Friday I made the call to keep Amy home from Kindy. She did have a bit of a cold going on. But mainly, she'd had a few challenges at Kindy this week and I thought I'd give her a morning off. Unfortuately it rained for the next two days so she ended up suffering from a bit of cabin fever. But I think the mini-break from Kindy was worth it.

To be honest, I had had enough of it all myself on Friday - several professionals on board not quite seeing eye-to-eye around Amy's ASD this week. It gets tiring explaining, and then mediating between professionals.

At one of the Nelson Autism NZ support group meetings I went to a few months back, a couple of Mums shared how they gave their kids a day off school every now and then when it seemed they were (sensory) overloaded. I think it is a very sensible thing to do. Actually on Friday there were three variables going on that led me to think it would be best if Amy stayed home: she had a cold, it was raining (so an indoor day at Kindy with forty kids) and she'd been unsettled sleep-wise for several nights. She'd also had a few issues at Kindy this week with confrontational behaviour/conflict going on which is all regular four year old social stuff, in a way. It's just sorting out social dynamics is quite exhausting for her at the best of times, let alone when feeling tired and under the weather.

Friday night Amy got a break from being inside for two days when she went to her first ever PJ party! It was held by a local ballet school - she was invited by a friend who goes to lessons there. The whole ballet school was there plus friends - over a hundred girls clad in PJs between the ages of four and sixteen! They watched Peter Pan on the big screen while eating chips and lollies. Then afterwards had a dance-off. Amy had an absolute blast! She just loved dancing in a big circle with all the big girls and was totally into the game where they had to sit down when the music stopped - and then get up to dance again when it started up again. The last ones to sit down went into the middle of the circle. Amy went into the middle when asked then slinked back next to her good friend later on! They played another game: "People to people" where the ballet teacher said a word like "bottom" and they had to stand bottom to bottom with a friend, or "nose" and they had to stand nose to nose etc. Amy thought it was hilarious! They also did an enormous conga line. Amy was well and truly pooped when it was all over!

It is always so rewarding as a Mum of an ASD preschooler to see Amy fitting in, just like any regular child. It is so great for her self-esteem, and her sense of belonging. And it makes me so proud!

Taking it all with a grain of salt

2009-09-05T00:00:00.000-07:00

I am grateful that a year post-ASD-diagnosis for Amy, we are fully entrenched in "the system". By that I mean there are a team of professionals and organisations on board to "help" Amy : a teacher's aide, Kindergarten teachers, special education, an occupational therapist, a speech-therapist (who I have yet to meet!), a paediatrician, the family GP, and a respite carer. In the pipeline there is also a social worker and a psychologist.

Even in a town of 40,000; there seems to be what I consider to be, quite a lot of support. Autism New Zealand continues to be the best form of support that we have, now that I've started making connections with some of the other local Mums of ASD and Aspergers kids.

Sometimes though, the professionals and organisations we deal with get it wrong. It was interesting when I did the SAMS course (a free course for parents of special needs children) recently, a big focus was on maintaining relationships with professionals/organisations. There were several horror stories from the Mum's present. Most of us had struggled to keep our emotions in check when dealing with difficult situations in a professional setting.

It is great having the access to this team of people that are there to help my daughter; yet sometimes it feels as though Amy is scrutinised more than she should be. Things are occasionally picked up that I believe are totally irrelevant to her autism.

This happened in recent weeks when a professional went into her Kindy without telling me and proceeded to tell myself and Amy's teachers aide that she had some issues in an area that was completely unrelated to ASD. My husband and I were flabbergasted. After talking to another professional about it (because not all the professionals/organisations on board are on the same page at times!); I was advised to just ignore that piece of information. So I will.

Overall, the help we get for Amy is outstanding. But every now and then, I am left wondering what a particular piece of advice was about or why certain observations were even made. It alarms me that a true understanding of ASD is not something that can be taken for granted with professionals.

An organisation I'm really rapt with right now is Support Works. At the end of last year we were allocated, after an assessment, several days of respite care. All we had to do was find a respite carer. We appointed a neighbour who seemed perfect for the role at the time but it fizzled out as she is a busy Mum with three kids. However three weeks ago we hired a new respite carer - a teacher-in-training at Amy's Kindy and it is all working out really well. My husband and I are going out on "dates" on a Friday night - just for three hours (7.30 - 10.30pm). Amy is asleep by the time our respite carer arrives so it's all pretty straight-forward.

It has been so good for us as a couple to go out and have some fun/time out of the house the last few Friday's. We have put in the hard yards with Amy for the past (almost) four and a half years so it feels good to give something back to ourselves at this point.

Persistence and patience is key

2009-08-25T23:49:00.000-07:00

There have been a couple of break-throughs over the last week or two.

Firstly, Amy has shown some independence on the toileting front. For many, many months we have been "habit training" Amy which has pretty much entailed placing a potty under her at particular times of the day and waiting for her to wee. Athough she'd had a patch of using the toilet; we were forced to regress back to the potty for quite some time as the pressure to sit on the loo was too much for her.

But something has clicked. She has started saying "I'm busting!" (words given to her by us to describe needing to go to the loo) when she needs to wee. She has grasped the concept of emptying her bladder and now clearly has the ability to decide where to empty her bladder. A lot of the time she chooses the toilet! This is huge progress in this household!

There were even two poos in the toilet on Sunday. I missed it because I was at work but Amy was certainly as proud as punch!!

Amy will be four and a half next month. So as far as average ages for toileting and all that goes; she's on the later side of achieving that milestone. It must be a good two years, if not more, that we have gently worked with her around toileting. So imagine how relieved we feel as parents to see that our daughter is gradually moving out of nappies! To be honest, I was worried about her being in nappies at school-age but I think we can safely say that won't be the case - even if she saves her poos for when she gets home.

Another incredible achievement this week has been around gymnastics class. After several rough sessions in which Amy was obviously sensory-overloaded/confused, I wrote a four page social story about gymnastics. This has helped so much. Amy now understands that she has one teacher who she needs to listen and follow during class. If she listens, she gets to have an after-gymnastics play before home-time!! She was amazing on Tuesday. She watched her instructor the majority of the time and was even able to copy her without my input! I was one proud Mummy!

Persistence and patience are key when parenting/working with kids on the autistic spectrum. Sometimes progress is painfully slow; but the break-throughs are worth every ounce of time and energy taken to achieve desirable goals.

Planning ahead

2009-08-11T00:51:00.001-07:00

Normally I am pretty good at planning ahead as far as anything new goes for Amy. However there have been some instances in which things have gone pear-shaped because of a lack of forward planning.

Today's gymnastics class went horribly wrong as a result of a lack of preparedness for Amy. It was her fourth class for her first term at gymnastics in a year or so. Although I'd taken her to gymnastics in the most recent school holidays, there wasn't a lot of structure within the school hol programme and she could pretty much do her own thing.

During the school term, however, the gymnastics classes are a lot more structured. They are forty-five minutes long and are divided into three obstacle courses around the gym followed by five or ten minutes of play. The obstacle courses change every week and this is one of several things which confuses Amy.

At her first session at the beginning of this term there were just four children in her class (including her) and one instructor. I did have to coax her back to join the group quite frequently, but all in all, the first session went well. The following week the class tripled in size and so the class was split into two groups with two instructors. Although this was somewhat confusing for Amy, she did really well joining her assigned group for most of the session.

Last week went really badly, however, because Amy decided the other group looked more interesting! I threatened to take her home if she didn't stay with her group to which she replied "I don't want to go home!!" and so rejoined her group. This happened several times.

Today was pretty much a repeat of last week except Amy really dug her heels in and wasn't at all keen to join her assigned group. Her behaviour was deteriorating so I took her home early. Although Amy on one hand didn't want to leave - she resisted leaving the gym and argued about it and even had a wee sob in the car - she actually was fine and even perhaps relieved to be out of the gym at the end of it all.

We know from a recent "sensory profile" put together recently by CDS (Child Development Services) that she has some big issues with overstimulation as far as the auditory side of things go. Two groups running at the same time, doing two different things in a gymnastics class is not the best set-up for Amy.

I took some photos of the session today and plan to write a social story about gymnastics so next time Amy will be a little bit more prepared for the session. I also spoke to one of the instructors and asked that Amy have the same instructor each week. Another possibility is shifting her to a class with just eight in it which means just one instructor and therefore just one group doing the same things at the same class in the gym.

It often takes Amy a good term to get used to doing something new. So it is very early days for her on the gymnastic front this time round. The thing is, she actually loves gymnastics - all that jumping, climbing and swinging is right up her ally. I just need so much patience and endurance as her Mum to take her there!

The next time I enrol Amy in something new, I will have a social story prepared beforehand. I went to a small meeting last night for "special children" which was run by a local social worker and psychologist - a husband and wife team. A lot of what they shared in the hour session I have heard, read or do already. But I was reminded how even if things run smoothly, the visual back-up ie: the social story, is so very important for these kinds of children. The anxiety levels are often high in social settings so every ounce of preparedness helps.

Amy is doing so well at Kindy. She is now eating lunch without me there. The Head Teacher at Kindy and I wrote a social story together around that one as Amy was not eating her lunch for a while there and running off and playing. Both the Head Teacher and myself were concerned a bad habit was been formed and that she would take this to school where her eating habits won't probably be so closed observed.

This last week we've had a big break-through on the toilet-training front: Amy did a couple of poos in the potty!! That is huge for us! I have been reading a couple of books around toileting-training kids on the autism spectrum and habitual training seems to be the way to go. Basically we will put a potty under Amy at assigned times and she will go wees. It is very rare that she will tell us she needs to go or that she will volunteer to go. Progress is slow on the toileting front but it's still progress!

Tomorrow morning I am meeting with some Mums I have met through Autism NZ to talk about getting funding for teachers aids for school. (Amy is due to start school April/Term 2 next year). I seem to be forming a wee support network with Mums of ASD/Asperger kids in the region. I went to the monthly Nelson Autism NZ meeting last week too which is always a good way to meet even more Mums who live locally.

Another thing that came out last night at the meeting of "special children" was how kids on the spectrum and kids with intellectual disabilities cannot be disciplined in the same way as "typical" kids. Don't I know that to be true! However, Amy still needs to learn about consequences so it was good to remove her from gymnastics today because she wasn't listening to her Mum and following the instructor as I asked her to. She understood. All parents have to choose their battles with their children. As an ASD Mum - it seems there are often more battles to deal with and many instances when negative behaviour is excused because Amy is trying to communicate. However today it felt good to win a battle with Amy! I understood her autism was causing her to feel overwhelmed - yet at the same time, she needed to learn that in gymnastics class you listen to the teacher or you leave.

Just breathe!

2009-07-29T23:57:00.001-07:00

It's been a rough couple of weeks on the parenting-a-child-with-ASD-front. We're the second week into Term 3 and it always seems to take Amy a week or two to resettle after the hols. She's done remarkably well at Kindy, however. It's just when she gets home that the wheels start to fall off!

Everything seems to be connected - eating, sleeping, and toileting on how compliant or non-compliant she is. She's been constipated, not eating all her meals and has been quite unsettled at night. She's been exhausted. She has had a cold for quite a few days now and the sick factor only adds fuel to the fire.

Basically I feel as if I have been living with an addict who causes havoc in the home with mood swings, oppositional behaviour, aggression and an unsettled disposition! Thankfully I have the mornings during school term to myself so I can re-energise. All Mums should have time-outs but those with children with special needs - especially so.

I love my daughter so very much but when she's in one of her "phases" - of being like a four year old drug-addict; I just feel so beaten, exhausted, frustrated and trapped! I am always relieved on these days when I hear the sound of a bike scrunching the gravel on our driveway when my husband gets home at 4.35pm!

Amy's teacher's aide has been teaching her to breathe when she gets stressed at Kindy. I only know this because Amy proceeded to take deep breaths the other day when she was "having a moment" at home. I need to do the same! There is no use getting wound up with a child on the spectrum who is in the crux of her behaviours. Easier said than done, sometimes.

Last night I was sorting through some old boxes in the garage and I found something I wrote when I was working with special needs kids in a children's camp in the USA: "Never take the behaviour personally." Hmmm, very insightful for a twenty-six year old non-Mum, I thought!

Other Mums out there often remark how patient I seem to be with Amy. I don't know, I am no saint. I lose my rag like any parent. For the most part I think Amy and I have a good mother-daughter relationship. Even though the last week or so has been filled with many challenges, nothing beats having my girl wrap her arms around me and ask me for a cuddle.

Back to Kindy!

2009-07-21T22:32:00.000-07:00

Although the school holidays were a success as far as living with an ASD preschooler goes; it is still great to be back into the swing of things now she's back at Kindy.

I have to admit, I prefer a routine myself. I'm such a Virgo in that respect - I like to plan my week out on a Sunday (if not earlier!) - penciling in visits to the gym, appointments and coffee dates with friends (while Amy is at Kindy).

I think many of us like to know where we are at day to day, week to week. Yet I managed to wing-it these holidays with Amy - often not planning our day til around 9am. Except for a couple of prearranged playdates, I pretty much just decided on the day what we would do. So long as Amy knew we were doing something, or going somewhere ; she seemed to be happy.

There were a couple of meltdowns in the first week. I think it took Amy a week to get into the swing of a more relaxed schedule ie: no racing out the door before nine every morning! But by the second week she was going with the flow.

Personally I quite enjoyed the school holidays. Amy had just had her first term at morning Kindy so it was nice to spend some days together. We had a couple of mother-daughter outings to the mall, and out to lunch. She had several playdates and we spent the better part of a day hanging out with some friends of mine who live by the sea.

Amy is pretty rapt to be back at Kindy this week. One of her good friends started morning Kindy this week and although they haven't been inseparable; they certainly have their moments when they sit close together on the mat or walk around holding hands together.

This term Amy is doing RDA (Riding For The Disabled) again as well as gymnastics. I took her to a school holiday gymnastics session in the holidays and she loved it so much, I thought I'd re-enrol her (she did a couple of terms last year). She has high energy and gymnastics certainly provides her with an excellent physical outlet.

Today was Amy's second IP (Individual Planning) session. Special education, the Head teacher at Kindy, Child Development Services, her teachers aide and myself were present. Things have been looking very positive for Amy lately. Her first term at morning Kindy went so well and she's started off this term on a good note too. The focus this term will be on communication and group play - encouraging social engagement at Kindy. At the moment Amy joins in with kids outside when they are climbing or playing on the slide, or will play Go Fish with a small group of children, but she's a little unsure of how to strike up a conversation with other children at Kindy. The idea is to use the teachers and her teachers aide as meditators as often Amy will start a conversation with something that is completely out of context and the other kids don't know how to respond.

All in all she is doing so well. Today at her IP meeting we were talking about her starting school next year. As she has a late March birthday, it looks like she'll be starting school Term 2, which starts after easter - in April. So she only has three terms left at Morning Kindy! (including her current one).

My feeling is Amy probably will be ready to go to school at the age of five since she is so keen to learn. She is very interested in spelling, adding, and even multiplication at this point!

Term Two '09

2009-07-01T23:39:00.000-07:00

Tomorrow will be Amy's last day at Morning Kindy for Term 2. It was her first term at Morning Kindy and she has come a long, long way. She started the term off with an ESW - a teacher's aide who comes in for two hours a session. Having someone at her side, assisting her socially and with her basic needs (eating, toileting) has boosted Amy's confidence at Kindy. For the first few weeks it was agreed by the Kindy teachers, special education, and myself that it would be best if Amy's Kindy sessions finished when tidy-up time began. This is because tidy-up time seemed to be the time of day when she'd lose it at afternoon Kindy.

This meant Amy typically left Kindy at 11.45am for the first couple of months, just as the tidy-up bell was sounded. Amy's first few weeks at Morning Kindy were pretty exhausting for her. She would come home absolutely depleted and would just zone out for the afternoon. Going away up North to visit family in the second week of this term only threw Amy off even more. We basically had to start all over again when we got back from holiday.

She only had one week in which she resisted going to Kindy. However, Amy did start to settle into her new routine a month or so into the term. When she started talking about Kindy at home, I knew that she was settled. Facepainting has been the interest that has motivated her to go to Kindy everyday. Even some nights before Kindy Amy has indicated which character she wanted to be the following day - anything ranging from My Little Pony to Spot.

When a Pirate Day took place in which all the Morning Kindy kids went for a walk to the local playground and then for "pirate food" (ie: hot chips!) at a local cafe, Amy resisted joining the crowd and went as a blue whale. She was adamant that her face was painted blue that morning at Kindy before we all headed out - she did not want to be mistaken for a pirate!

Over the last couple of weeks I've started stretching out Amy's sessions at Kindy so she stays for tidy-up time and then lunch. This has gone really well. Amy has grasped the concept of tidy-up time and walks around Kindy exclaiming "tidy-up time!!" when the bell is rung. Lunch on a sunny day is out on the deck, and is inside on the mat on a cold or wet day. Of course living in Nelson the sunny days outweigh the unpleasant ones, even in Winter, so Amy has enjoyed munching on a bit of lunch outside with the other kids and then having an extra play outside before the hometime bell is rung. She's not so keen to hang around so much when lunch is indoors. Next term I will wean myself out of the lunches as obviously I want to know that she'll be fine when she goes to school and is eating with her peers. I will look into possibly pairing her up with another child/children at Morning Kindy for her lunchbreaks.

It has been interesting observing Amy's little Kindy friendships developing. There still appears to be a lot of parallel play going on Amy's end yet I have witnessed her engaging in conversation here and there. Unfortunately not all the Kindy kids are tuned into her speech and so sometimes her attempts at connecting with others are overlooked. Amy has joined in games such as "Go Fish" and has clearly learnt a lot about turn-taking and gained some valuable social skills such as using others names when playing with them.

Only once all term did I see her try to push a boy out of her way. This is huge progress as at the end of Term Two Amy was on a pushing rampage at afternoon Kindy. Outside of Kindy Amy barks when she wants some space or wants to socialise with others and isn't sure how to and I have seen her do that a couple of times at Kindy. It's subtle and could easily be seen as Amy just role-playing.

This term Amy started going to Riding For The Disabled (RDA). She has been going on Mondays at 1pm for half hour sessions. Amy's been allocated a horse called Cherry and really enjoys her time at RDA. She is led by two volunteers around an arena and every week does something different. She's had to collect objects off the surrounding fence in the arena, put hoops on cones, ride backwards, and learn some basic commands such as "Ride on, Cherry." Her confidence has grown in the few short sessions she's been (we missed a couple of Mondays because of being away, public holidays and bad weather). I think it's very complementary to Kindy - going riding on her own once a week, out in the country after being with forty children in a classroom.

Amy's teacher's aide has kindly lent us a mini tramp which has been great. Amy bounces on it several times a day and it's just such a good thing to have when she's in one of her antsy moods.

All in all, this term has been a fantastic one for Amy. A big thank-you has to go out to all the Kindy teachers, her teachers aide and special education for building on her strengths and weaknesses at Kindy. She's come a long way. I started off this term feeling a little anxious but now know that I can leave her at Kindy for three hours and she is just fine. The RDA volunteers are also very skilled at working with children with special needs. Next term I am thinking of adding gymnastics to the mix and/or incorporating soccer as Amy has expressed an interest in it.

Gluten-free tummy upsets

2009-06-20T23:54:00.000-07:00

There is a lot of information out there around going gluten-free. Lots of recipes, products - even people willing to share their stories. But what you don't hear is how gluten-free products can cause stomach upsets. Our wee family has had a couple of weeks worth of tummy troubles as I've experimented with a gluten-free diet.

Dinner hasn't been too much of a problem. Meat and three vege. Rice. Soup. It's not too hard to think up gluten-free options for the main meal of the day. But I remain stumped around creating gluten-free lunches. This week I've introduced gluten-free spiral pasta and corn chips. I normally add carrot sticks or pineapple pieces in her lunch-box. Yet it seems this doesn't quite fill Amy up and as she has asked for bread often when we get back from Kindy; I have let her continue to eat it.

I have been baking up a gluten-free storm in an attempt to find some substitues for bread for her lunch. But my attempts at baking with firstly gluten-free flour and then rice-flour only made our family feel a bit off. The gluten-free flour provided us with tasty enough baked goods - pancakes, muffins, chocolate chip cookies, and a yummy banana cake. But the pay-off has been stomach cramps. Not nice. Amy ironically went from constipated to the reverse on the gluten-free flour. The rice flour quite frankly tasted awful - banana chocolate chip muffins and chocolate banana loaf. Amy liked it though. And we all had adverse stomach reactions to the rice flour. It seems the gluten-free flour goes right through Amy in particular which confirms on one hand that she has an issue with too much gluten.

But I am not so sure she needs to be entirely gluten-free and to be honest; I'm not sure how I'd manage that with a very determined four year old. My husband and I agreed tonight that she could just be partially gluten-free for now. We just have to watch how much stodge goes into her diet. I won't bake for a couple of weeks and we'll see what happens.

I have noticed in the three weeks or so that I've greatly decreased lactose from Amy's diet (no cows milk) and cut down on gluten-free products (not so much bread, a gluten-free cereal, and several gluten-free dinners a night) that her mood has lifted considerably. She isn't constipated right now, although the poor thing has swung to the other extreme off and on over the last week or two. I am just going to combine my mothers intuition with common sense here and hope that I work out a good balance for her diet that encourages regular, healthy bowel movements.

Amy's week has been more active than usual. On Wednesday she had a pirate morning at Kindy and all the kids, teachers and some parents walked with the Kindy kids to the local playground and then to a cafe for "pirate food" and then back to Kindy again. The majority of the kids dressed for the part. Amy had a lot of resistance around being a pirate and wanted to be a whale so a whale she was! (A blue shawl and a bit of blue face-paint completed her outfit) It was a decent walk and it tired most of the kids out. Saturday we took Amy for a big family walk up the Centre Of New Zealand (an iconic walk here in Nelson). It's quite the climb and Amy did well - although she wanted to be piggy-backed by her Dad for some of it. Today Amy and her Dad walked to the model trains and back which is also quite a walk.

Amy's spirits seem a lot higher after a bit of extra exercise. She is very active at Kindy and we now have a mini tramp in our lounge (that we have borrowed from her teacher's aide) which Amy uses through-out the day. The point is, she needs to let off steam like any other kid. Being on the spectrum and unable to access her emotions easily means it is essential she gets regular exercise. While she has been settling into morning Kindy I have kept her afternoons pretty quiet. But I think she's pretty settled now so a a bit of exercise outside of Kindy every week will no doubt continue to benefit her.

More specialists on board

2009-06-10T20:36:00.000-07:00

It was a busy morning. I was at Amy's Kindy first thing (8.30am) for a meeting with the Head Kindy Teacher and the special education coordinator to fill out the paperwork to apply for the ESW hours (teachers aide) for next term. It is always exhausting tuning into the autistic-side of Amy's personality. To get the funding, she has to look pretty "bad" on paper and no (good) parent likes bad-mouthing their children. The meeting went pretty smoothly. It is good to check in to be reminded of the areas Amy needs help in. She still needs a lot of guidance socially at Kindy though she is thriving there, in her own Amy way.

After the meeting finished I came back home for a ten minute break before a social-worker and a psychologist came round from Tautoko - they provide a service to "Children or adults with an intellectual disability and/or Autism Spectrum Disorder, whose behaviour challenges." We got a referral from Amy's paedaetrician. Today's appointment was an introductory appointment as I won't get a proper appointment for a few months because of a big waiting-list. But today we covered the two major issues we are struggling with with Amy: meltdowns and toileting. We also touched on sleep issues a little.

The older Amy gets the more noticeable it is that she doesn't cry much. Yet, she operates at a high level of anxiety quite a lot of the time. Invariably what happens is the kettle blows and my husband and I are the receivers of this pent-up angst. We have been worried that her meltdowns are getting more aggressive. Apparently this will be looked into more when we have our proper consultation with Tautoko. In the meantime we are to continue doing what we are doing: sending Amy to her room for quiet time when her behaviour is unmanageable. The social-worker also suggested starting a scrapbook with reference to her moods ie: times when she felt happy, times when she felt sad.

Toileting has us completely stumped. We have tried it all - bribes, sticker charts, favourite toys acting out going to the loo, social stories, and a brand-new Wiggles toilet-seat but at the end of the day - if Amy decides she doesn't want to go (even though we know she needs to) - it is very, very hard to pursuade her. The social-worker suggested having a break from toileting as we're all stressed and frustrated with it. Amy hates us being on her back as such about it and we are tearing our hair out trying to understand why a child who knows how to sit on the toilet, pull down her pants and pee just won't do it!! The social-worker said it's a complex issue and very, very common for those on the spectrum.

Sleep-wise Amy has always been unsettled at night. She goes through phases of sleeping through the night but these seem to come and go. As her Mum although it means my own sleep suffers, I am okay supporting her at night (by sleeping in her bed with her when she wakes) because I do think it is anxiety-related. She is still adjusting to being at Morning Kindy five mornings a week. There are social stories we could try to encourage her to sleep alone and a remedy for sleep that we get can get prescribed from the paedetrician called melatonin. Will think about that one - it may be worth looking into.

Some other suggestions made today by the social worker were to get Amy a mini-tramp as she clearly needs to burn off some excess energy. With her mornings being full with Morning Kindy we haven't been getting out as much in the afternoon. She is normally pretty active at Kindy however it has rained for the last three days and I think she's chomping at the bit to have a good runaround (might have to resort to Chipmunks tomorrow - an indoor playground). I'm thinking of re-enrolling her in gymnastics next term. She has done it the last couple of years for a term or two each year and does get a lot out of it (though it is often tiring for me trying to encourage her to join in with the rest of the gym class!)

It's good getting this outside help. I do always appreciate it but it is emotionally tiring as a Mum talking about your child's so-called negative characteristics.

As for the gluten-free diet; things are pretty slow on that front. To tell the truth I haven't really had the energy to make a full conversion. I'm shopping pretty much as normal although Amy has been lactose-free in the milk department and is still on gluten-free cereal. She is eating regular bread though - I haven't yet found a substitute bread that she likes. I'm trying to be as gluten-free as possible at tea-time but things like fish-fingers and bacon and egg pie haven't quite left the weekly menu. I have stopped buying the oven-baked chips though! Amy is one determined four year old and I know what she will eat so it is a challenge trying to think of gluten-free foods that she will like. We're still a WIP around that one.

Appeal week for Autism New Zealand

2009-06-05T00:40:00.000-07:00

Tomorrow Morning Amy and I will be collecting for an hour in the lobby at New World Nelson for Autism New Zealand for their annual appeal. I wasn't going to take her originally but now my husbands working so she'll be coming along for the ride. I think she'll quite enjoy having a wee "job" to do in the morning. I didn't mean for her to be a poster-child for autism - I certainly hope people don't see it that way. She is simply helping me collect money for a very good cause.

All I can say as a parent of a child with ASD is that Autism New Zealand is one incredible organisation. Our daughter was only diagnosed in August last year yet in that time we've utilised a lot that Autism New Zealand offers. Earlier this year my husband and I did a day-long course together for just $30pp that was incredible. Understanding the Autistic Spectrum: Implications for Learning was a great introduction to the autism spectrum and how those on it learn differently. I did the Introduction to Advanced Strategies for Autism Spectrum Disorders which went into things in more depth. It was also excellent.

These courses run by Celeste Littek are highly benefical and essential (in my eyes) to educators - those who teach children on the autism spectrum. Autism New Zealand needs money so these courses that are run annually around the country can continue. Without them our children are in danger of being misunderstood and perceived as the badly-behaved children that they have in the past.

There are another half a dozen courses run by Autism New Zealand which are all benefical to parents, family, extended family care-givers and educators.

I go to the local support meetings here in Nelson which are held monthly - something else supported by Autism New Zealand. I'm only a newbie on the block but I'm already grateful for the networks I'm starting to form - nothing is as valuable as connecting with other parents with children with ASD. I truly look forward to these monthly meetings.

When I took Amy to the paedaetrician initially and she got her ASD diagnosis; I was given an A4 sized booklet from Autism New Zealand full of a heap of information. It was a very useful resource and opened up this new world of autism without me having to research too much myself.

I'm sure I haven't even scratched the surface with what Autism New Zealand do. All I know is they are an amazing charity - please support them if you can.

Gluten-free progress

2009-05-27T02:56:00.000-07:00

I went food shopping today - the second shop since deciding to get Amy on to a gluten-free diet. Although there are some gluten-free products to choose from at our regular supermarket; not all of them are liked by Amy. She likes her Cocoa Bombs cereal (which is good because we've always struggled with getting cereal into her) but hasn't liked any of the gluten-free bread I've bought thus far (rice bread last week and corn bread this week). Interestingly, she's not too keen on any kind of bread at the moment. So lunch seems to be comprised of popcorn, pineapple pieces and luncheon sausage.

I made some gluten-free pancakes in the weekend which turned out really well. However a couple of attempts at baking cookies kinda flopped. I am a WIP in using gluten-free flour - getting the consistency right is a bit of a challenge.

I got three books out of the library on Monday to do with gluten-free cooking. One is a New Zealand book crammed with recipes. I have three recipes I will try this week, all going well.

I'm still half-hearted about taking dairy completely out of Amy's diet. But I've stopped buying her special kids yoghurt, we haven't had cheese for a week and she's been on lactose-free milk for a week. I do buy icecream over the Summer and stopped buying it a few weeks back for home but she's been missing it a bit. So she and I did treat ourselves to an icecream each at the mall today.

I made burgers for tea last night and we had kumaru chips instead of oven-baked chips (which are coated in wheat-flour). Amy wasn't happy about that and asked where her "yellow chips" were - she refused to eat the kumaru ones. I gave her a bun but she ate the bit with butter on it and that's about it. Incidentally I bought some rice bran oil spread this week which no-one seems to mind. I can see there are going to be a lot of hit and misses around this subtle dietary change I'm trying to introduce.

The more I think about it, the more I am convinced that Amy's constipation issues are not helped by her intake of gluten. She hasn't had any supermarket cookies for a week - only Mums gluten-free cookies that have mainly flopped, and has eaten hardly any bread. There is no evidence of any kind of improvement so far yet it has only been a few days yet I think we are on the right track though so I will keep persisting.

Heading towards a gluten/dairy free diet

2009-05-20T20:04:00.000-07:00

Ever since Amy was diagnosed with ASD, it has been suggested from several sources that a gluten/dairy-free diet might be the way to go. As a Mum my priority has been managing some of Amy's more unsavoury ASD traits up to this point. The social/emotional/behavioural stuff has been exhausting and I didn't have the time or energy to do much beyond managing our ASD preschooler on a daily basis for quite some time.

However now that Amy is pretty much settled into Morning Kindy with a teacher's aide, and that I am getting some "me-time" (i.e: time to think!) while she is at Kindy, I feel ready to explore the dietary aspect of ASD.

Many moons ago (in the mid-nineties), I worked two Summers in a children's camp in the USA for children with learning/emotional and behavioural problems. The camp had a preservative-free diet. Half-way through the camp the parents could come to visit and often came armed with a lot of food full of all the stuff these kids had been so carefully weaned off! Not surprisingly the kids with ADHD were off their nut after eating copious amounts of junk food. It took several days for the kids to settle down and a lot of extra work and patience was require by the camp counsellors! It was very obvious that diet affected a lot of the children that went to this camp.

The ASD child comes with high anxiety levels. Amy is anxious on a daily basis around some simple routine-tasks such as toileting and getting changed to have a bath, for instance. So scenarios outside the home that are riddled with uncertainties that cannot be preempted are a constant source of worry for her. I can read how anxious she is on any given day or week by how regular/irregular her toileting is and in particular this is often indicated by what's going on (or not going on!) in the poo department.

The last couple of weeks have been extra-anxious ones for Amy. We went away for a week and then the week in which we came back was about her decompressing after our trip away. Sure enough she got a bit more bunged up than usual - and this only adds fuels to the fire on the ASD front. When I got a text from my husband on Sunday reading Poo at last! I understood totally his jubilation! When a poo finally arrives, Amy's demeanour completely changes. It's almost as though sometimes the whole household cannot relax until a bowel movement happens!

I have been thinking about how when we were away we ate a bit of junk food/food full of preservatives. Our diet is usually pretty healthy overall. I felt gross myself after all the stodge. I personally cannot eat a lot of gluten myself so have always agreed with the theory that some of us just cannot eat a lot of it. A very good friend of mine claims to be around ninety percent gluten-free and has felt so much better since eliminating gluten from her diet.

Amy and I typically bake together once or twice a week. I have been aware of all the extra gluten going into her system and a couple of weeks ago bought some gluten-free flour. This was my first step towards thinking I might give the gluten-free thing a go for Amy.

My husband also recently found out he has high cholesterol levels so I thought I may as well start reducing the dairy-intake in our household as well. So I went food shopping this week without doing a lot of research - just winging it to see what I might come back with. It was pretty easy - I just got some gluten-free cereal for Amy (which has Cocoa in it which she loves), some gluten-free bread (which Amy isn't that keen on) and some gluten-free spaghetti. Wheat flour is the ingredient to look for. Some of the meals we've had this week have had wheat flour in them: chips/fish fingers/quiche - I am a WIP around reading the labels for gluten/wheat flour content.

For my husband I just looked out for no cholesterol products - the only big difference was changing brands for margarine. For the first time in a long time I came home with no cheese! I will miss that on our spaghetti bolognese and no more cheese toasties which makes me a little sad! I am choosing to join my family in these dietary changes as obviously having food in the house that a four year old cannot eat is not fair nor worth the hassle! It is going to be an adjustment but perhaps a welcome one. Even I am bored with cooking and eating the same-old, same-old.

There is a wealth of information on the net about ASD and the gluten/dairy free diet. I haven't dipped into it too much at this point. I am just following my intuition. Amy won't be gluten-free overnight and I am on the fence about her being entirely dairy-free. I think for now I will just cut out cows milk (I bought her some lactose-free milk which she likes) and cheese but will allow yoghurt. (just not on a daily basis).

Amy had her B4 School Check today which went well although she is being referred back to audiology (she went through audiology as part of her ASD diagnosis almost a year ago) as there were some minor issues around hearing a particular pitch. She also wasn't so keen on wearing an eye-patch or having me cover her eye so she didn't complete the vision test and will go back in about six months to do it again. Part of the check entailed talking to a nurse about her development across the board. Since she has a diagnosis I was about to talk to the nurse about her ASD in detail. Basically these checks are an opportunity to pick up any problems before New Zealand children start school. When I said I was looking at making Amy's diet gluten-free she suggested I put her on a complete gluten-free diet for a whole month to see if it makes a difference so I will do that. I guess I am slowly gearing up towards doing so!

A tough day on the ASD front

2009-05-13T20:08:00.000-07:00

Yesterday was an almightly post-holiday backlash. Luckily Amy didn't go to Kindy as we had an appointment with the paedeatrician.

When Amy refuses to eat her breakfast and is (extra) resistant towards toileting; I know that she's in one of her non-compliant phases. So yesterday morning the red flags were there that the day was going to be filled with lots of ASD moments. It's almost as though Amy starts to spiral through her own refusal to stick to her routine.

Sure enough when we arrived at our 10am appointment with the paedeatrician Amy started to dig her heels in. She was okay being weighed and having her height measured but she did not want to go into the small room that is the paedeatrician's office. (It was our third visit in less than a year). Amy made this clear by not budging once her weight and height had been recorded - she simply didn't want to leave the room. The only way to get her out was by me lifting her and at 21.45kg, I tell you it is a physical struggle (being just under 60kg myself).

I picked her up and carried her to see the Dr at which point she started physically attacking me - hitting/pulling my hair/attempting to bite me. After a few minutes of it the Dr and I thought perhaps she could just play outside in the waiting room but she was too worked up. She ended up being most comfortable going back to the room she didn't want to budge from at the beginning. As I talked to the Dr I could hear her grunting and groaning to herself in frustration. By the time I came out of the appointment, she had calmed down enough to play for a bit in the waiting room.

In a way it was a good thing her behaviour flared up right in front of the paedeatrician as now we have a referral to see a psychologist (!) within the next six months. My husband and I are accepting any offer of help that comes along. I think consulting with a psychologist would be great - as the Head Teacher at Kindy commented today : "You don't want her doing that (attacking us) when she's ten!". Well, no. Being attacked by your four year old is one thing and I am already a bit concerned that she could harm my husband or myself during one of her meltdowns. When we were away last week my husband ended up with a few scratches on his face - she actually drew blood. I am not surprised in the least to hear about the occasional report in the news in which an autistic child has tried to hurt or even kill a parent as autistic children typically lash out at their nearest and dearest.

After the appointment with the paedeatrician I took Amy to The Warehouse to get some new shoes. I wouldn't normally be so brave after a meltdown but her shoes had fallen completely apart - she kind of needed them. Yet the non-complaint behaviour continued and I got sympathetic looks as Amy tossed several pairs of shoes angrily down the aisle because they weren't red. (She'd got it in her head that red shoes were what she wanted - last week it was gumboots with My Little Ponies on them). Because she refused to choose a pair of shoes from the two pairs on offer; I ended up choosing them myself. She's been wearing them ever since.

Yesterday was certainly a nightmare on the ASD front. Behind closed doors (at home) Amy never actually snapped out of it. There were no tears - instead there was lots of aggressive behaviour towards me. I realised yesterday that Amy and I hadn't had any proper "me time" for around ten days. So I went off to the gym last night for a much-needed Mummy time-out.

After the gym I went to the local primary school for a prospective pupil meeting. Although Amy doesn't start until next year, I really wanted to check out the school and to meet the teachers. I now feel happy and confident that Amy is going to be well-supported at primary school. I spoke with the deputy principal (DP) and the new entrants teacher and both are familar with ASD and Aspergers. The DP currently had three children with ASD/Aspergers in one of her classes. I also think Amy will love learning. Kindy is almost a bit boring for her - just hanging out with a bunch of four year olds five mornings a week!

This morning I went to the Nelson ASD support meeting at a local cafe. I really enjoyed talking with other Mums about ASD/Aspergers. There were around eight of us today. This was my fourth meeting so I'm slowly getting to know everyone. Every meeting has varied in size (from two - twentyish). People come and go. But there is no doubt that connecting with Mums in the same boat is one of the best forms of support you could ask for. I am so grateful that there is a support group here in Nelson - it is invaluable.

Like a fish out of water

2009-05-11T01:12:00.000-07:00

Travelling with our ASD daughter is a little like taking a fish out of water. At home her exposure to all the outside things that are likely to send her off-balance can be monitored. When away, that control is lessened considerably. Every trip I go on with Amy involves an inventory at the end of what I could have done better - as well an acknowledgment of what worked.

What worked this trip was splitting our trip into two parts. For the first three nights we stayed in homes with other families. For the final four we stayed in a motel. The timing was perfect - Amy had clearly had enough of sharing her space with other children after three nights. Until that point she did really, really well. It was hard for the families we stayed with those nights to "get" Amy's ASD as really, it was barely apparent.

On the first night (Monday) Amy fitted in quite happily in the "madness" that was going on at her cousin's home in Hamilton - seven children including Amy at tea-time eating sausages and chips. There was the odd instance of "space-invasion" including pushing over a younger cousin on purpose; but all in all, she fitted in really well. She was quite fascinated with her one year old cousin and played quite a bit with him.

We stayed the next two nights (Tuesday, Wednesday) with a good friend of mine with two children under three. Amy got on really well with the three-year old as the two of them seemed to enjoy parallel-play. They had one outing together to Lollipops which was a hit as well. Amy played appropriately with the eight-month old too, handing her toys in a gentle fashion. However when Amy didn't want the baby in her space she asked me to pick her up. The morning we left Amy was starting to kick out at the baby - it was time to move on.

Although we had a motel room, our social engagements with extended family didn't all go so well. I thought a motel room would give Amy the space she needed but it seems a weeks holiday is perhaps too long for her, regardless of where we stay. (We had a weeks holiday with my Dad and family in January that was a struggle for Amy).

Our first visit with family on Thursday morning was with Amy's Nana. I tried to prepare Amy as much as possible and listed all the family I thought would be there. However, my in-laws equate to a very large family and it is impossible to predict who will be around at any given time. As it turned out, Nana's house was chocca full of people and Amy didn't want to come in. She even said "It's too scarey". Normally I wouldn't push her, but we had travelled to see family so I pushed her out of her comfort zone. All of the children in the room were under three and Amy wasn't keen on this combo of children at all. We managed to convince her to have some lunch and eventually she relaxed a bit more and said it wasn't "so scarey." I took her outside to play in Nana's big backyard but Amy wasn't so sure she wanted to be there and made this known by throwing sand into the areas her younger cousins were in.

Thursday afternoon we headed round to have fish and chips for tea with a cousin that Amy has clicked with really well in the past (she's six, going on seven). The two got on like a house on fire, colouring and watching DVDs together. It is always a huge relief when Amy gets on well with other children!

Friday it was obvious that Amy was starting to feel the strain of a lot of socialising. She had her first meltdown of the week. What do I mean by meltdown? In this family it is a case of pent up emotion that hasn't been relieved for a while that finally blows. We'd been away since Monday and Amy hadn't cried once. We know when she needs to a good release because it's all in her behaviour. Basically she gets really silly and non-compliant. If changing tack doesn't change the behaviour we resort to shutting her into her room with the door closed (at home). This will normally frustrate her so much that the tears are forced to come. So we did the same at the motel. While the door is held shut she throws things around and kicks the door. Opening the door at this point often results in Amy attacking a parent - sometimes she'll be so mad at the parent holding the door that she will lash out at the parent on the other side of the room who has nothing to do with the current time-out! Amy is very good at taking her anger out on others.

Eventually the tears came and Amy had a good cry. After this we went out to a local cafe together and then drove out to see the same cousins as above but she fell asleep in the car on the way out. When she woke up she wouldn't come out of the car as her favourite cousin was at school. So she sat out in the car for fifteen minutes or so by herself. She requested at this point that we go back to the motel which we did. However within minutes of arriving we had an unexpected family visitor and Amy made it very clear she wanted her own space! We have been encouraging her all along to use her words and this is what she did; "I don't want to play!" she said when her two year old cousin turned up. She requested that I pick her cousin up (so she could have all the floor space to herself). Things got steadily worse with Amy screaming if her cousin was even within a centimentre of her pony toys - eventually Amy's Aunt and the two year old cousin left. This particular Aunt said she had a very good insight as to what ASD was all about!!

Shortly afterwards Amy had an enormous meltdown - the second one on the Friday. At this point I was truly regretting the fact I'd booked a week-long trip and was wondering how we'd survive three more nights!

Saturday we went to Amy's Nana's 60th which was a pot-luck lunch in a country hall. Amy was already so exhausted from a busy week of travel and socialising; I really wasn't sure how it would go. The first couple of hours went okay - Amy flitted around the hall, dragging a couple of helium balloons and helped herself to cheerios and chips. However things got pretty loud with over ten children in the hall so we decided to take a little time-out and went for a walk down to the local school. Amy had a wee play in the playground. When we came back to the hall she ran ahead of me only to get her finger stuck in the door. She screamed blue murder and had a good cry. It was definitely time to leave for us yet there were family photos to be taken so we stayed on a little bit.
Amy was past it yet we managed to stay three and a half hours all up at the lunch which wasn' t too bad.

Sunday family hosted an all-day lunch. This was at Amy's favourite cousin's place again. It worked quite well because there was a huge backyard with a trampoline and we were able to take Amy outside when she needed a break from the indoor play. Her older cousin got a bit annoyed with Amy's attempts at joining in some complicated play and I had to explain to Amy's cousin that Amy only wanted to join in and didn't understand the "rules". We stayed for about four hours and it worked okay because we were able to move Amy inside and outside when she needed a change of scene. She had some quiet-time in the car towards the end too which she seemed to be grateful for - that quiet space which is hers that isn't in danger of being invaded.

All in all it was probably a successful week away with Amy. I say probably because there were two days there with the meltdowns and all in which we were pretty much stuck in a motel for large parts of the day as Amy needed a break from all the socialising. She was pushed and although I questioned it at the time, I think she has grown socially this week. She has mixed with newborns all the way through to seven year olds. She is only four years old and is still getting to know our extended family. I'm sure these trips away will get easier over time!

Travelling with an ASD child

2009-05-03T13:24:00.000-07:00

This afternoon we're heading up North to catch up with my husband's side of the family for a week. Travel unnerves many a parent. But traveling with a child on The Spectrum is like playing with fire. It cannot be helped; all the hard work that is put into the week around routines is unraveled and as the routine unravels; so does the child. I am already on tender-hooks and we aren't boarding the plane for another three and a half hours!

We've traveled a bit with Amy as our family are spread throughout New Zealand and Australia. We can stay with friends or family for short bursts but it seems to be best for everyone if we have our own accomodation for the long-term. We've mixed things up a bit this trip. For the first three nights we're staying with friends and family - two situations in which there are two children under the age of three. Both families have been sent a link to this blog. Like a true Mum of a child on The Spectrum I have packed sticker charts, stamps, and social stories in the hope of keeping our routine going as much as possible in the midst of staying with other families. The next four nights we have our own motel which will be great. Amy has nine cousins all up so it will be good to break up our visits with them all.

I guess something I've been thinking about lately is how one almost needs to ASD-proof a home just like you would if there was a baby coming into your home. If there is something that is obviously a target for ASD confrontation then it can be removed or the children can be given house rules for play that will work for everyone.

We went to one of Amy's friends birthday parties in the weekend. As soon as I saw the Wendy House in the corner and did a head count of four kids my stomach churned. Wendy Houses seem to be an invitation for space invasion on my daughter's part. Every time she enters one of those be they at Chipmunks or someone elses home, there is often an "incident". This usually involves the other child - if there are two - coming out in tears. Quite simply Amy's air bubble has been punctured in these situations and so she pushes, hits or kicks to get the other child out of her space. So on Saturday when all four kids wanted to pile into the Wendy House I made some rules with all the kids: "You can only sit in here all at once if you all sit still, otherwise you're all coming out!" I find as a Mum of an ASD child that I invariably end up on crowd control. Where some Mums can just leave their kids to mix happily wherever and whenever; this ASD Mum is pretty much always in the same room (unless things seem to be very settled on the play front).

One of the kids at the party was a little older than Amy and started hitting her with a cushion - in a somewhat playful manner. Of course most of the parents present at the party didn't see this and turned around in time to see our blonde-headed girl in her princess party frock lashing into this boy. So play-fighting is another cringe factor for me as an ASD Mum. A few weeks ago an older boy was throwing balls on to other children's heads at a swimming pool (yes, really). Sure enough, twenty minutes later Amy was doing the same and of course got carried away. She doesn't understand play-fighting and if she witnesses it she will end up hurting other children. It's that simple.

Toileting will no doubt take a back seat on our trip away this week. We struggle to get Amy on the toilet at home so we cannot have high expectations around her using a toilet during what will be an unsettling time for her. When she is toileting "well" she goes to the loo when prompted by us three times a day. When she is anxious she has no interest in going on the toilet and will hold on for hours. This is all to do with wees - poos are done any time, any place in her undies. If we can preempt a poo a nappy will be put on but there have been many surprises the last few weeks. Amy simply doesn't seem to care about soiling her pants. Her peers are already commenting about her accidents/nappy use which breaks my heart. Older children ask: Why is she still in nappies? I reply she's still learning how to use the toilet. Amy is oblivious to the outside interest around her toileting - which is a good and a bad thing. After our trip we will be introducing yet some more social stories around pooing on the loo.

So although I am looking forward to seeing friends and family up North I know it is going to be hard work to keep things rolling in the background so that Amy does do well and gets her needs met. I have told all those up North to not be offended if we have to leave social gatherings early - as there is going to be a bit of socialising within the week.

Every trip we go on I learn a little more about traveling with an ASD child. Our last trip in January to Auckland (to see my side of the family) was a real stretch for Amy. A week was way to long for her to share accomodation with two children under six. She was desperately fighting for her own space a lot of the time. It was hard, hard work. Yet I didn't prepare my family in any way. I am hoping by offering some insight into Amy's ASD via this blog that family and friends this trip will have some understanding. That's all I can hope for.

Some great web sites

2009-04-28T01:47:00.000-07:00

I came across The Ministry Of Education site tonight which has some great information about ASD within the Special Education Sector. Also check out The Sexy Backs For Autism Awareness blog by James Price - a great concept for an excellent cause!

Letting my girl go

2009-04-28T01:01:00.000-07:00

It was Amy's second day at Morning Kindy today. Yesterday I stayed with her for the whole session because it was her first day. Our special education contact and Amy's new teachers aide were there so she had quite the support crew. But today I left her too it - went off to the gym and met up with a friend there for a sauna and a cup of tea.

It was raining today and there were forty kids inside all in very close proximity at Amy's Kindy so I couldn't help myself - I made a 10.15am call from the gym. I was assured that she was fine and was bonding well with her ESW (education support worker), aka as a teachers aide. I didn't think it was out of line me calling given all the scenarios over the last two years where things have gone so very pear-shaped when Amy has been amongst of groups of children. But after the phone-call I relaxed considerably and felt like a huge weight had been lifted off my shoulders.

The last four years have been so very intense as a Mum of a daughter with ASD. We have a respite carer and friends/neighbours we can leave Amy with for short bursts but it is typically for no more than two hours at a time - and typically just every now and then.

In the end at afternoon Kindy I was only leaving Amy for an hour and a half (out of a possible two hours) and that was just three times a week. So ten hours a week with a teachers aide - that is truly a miracle! However Amy won't be staying at Morning Kindy for the full twenty hours as three hours a session seems to be enough at this point for her. But still - fifteen hours a week (the first hour with the Kindy teachers and then the next two hours with her teachers aide) feels huge for us. I think it is going to be good for all of us to have a teachers aide on board.

It feels good to have reached this point with Amy. To have gone through all the heartache and frustration that we have over the last year in particular as we got her diagnosed and then brought her into mainstream education with the support of several specialists.

It has been worth it. Day two at Kindy and I can see Amy is out of her comfort zone yet she is gorwing. Little steps. She isn't going to the toilet at Kindy yet (though will sit on it) - a sign that she is pretty anxious. But today she made progress and sat down with some of the other children and ate some Morning tea.

I think she's doing well. She is absolutely exhausted though. Even I am finding Morning Kindy quite full-on with all those four year olds rocking around!

Info sheets

2009-04-21T14:48:00.001-07:00

I have spent a good part of last night and this morning writing up Info Sheets for the children at Amy's Kindy, her other friends and for her care-givers. I based the info sheets from an example Celeste Littek gave us on one of her Understanding ASD courses I did recently. The info sheet for caregivers was written solely by me yet the early intervention teacher we have regular contact with showed me examples other parents had written about their children with ASD which inspired me to do the same.

I think it's important there is as much information as possible on hand for those in contact with Amy as this just helps with understanding her ASD. We met Amy's teachers aide for morning Kindy yesterday which was great - the two of them got on like a house on fire.

Amy starts Morning Kindy
(a story for the children at Morning Kindy)

Amy has just started morning sessions at Kindy. She wants to be friendly, but she is still learning what friends do and how to join in. Sometimes Amy gets anxious and needs some quiet time in her special spot.

You can help Amy if you:
* let her join in
* use her name "Amy" before you talk (so she knows you're talking to her)
* show her what to do and speak to her in a calm voice if she makes a mistake
* try not to use too many words and listen to her speak
* if she stands too close move away or say "You're standing too close, please move away"
* if she pushes you she needs space and wants you to move away. Please tell a Kindy teacher if she pushes you.

My Friend Amy
(for children on playdates/children meeting Amy for the first time)

I have a friend called Amy. She wants to be friendly, but she is still learning what friends do and how to join in. You can help Amy if you:
* let her join in
* use her name "Amy" before you talk (so she knows you're talking to her)
* show her what to do and speak to her in a calm voice if she makes a mistake
* try not to use too many words and listen to her speak
* if she stands too close move away or say "You're standing too close, please move away"
* if she pushes you she needs space and wants you to move away

About Amy
(For caregivers and any other adults where info about ASD would be beneficial)

Amy was diagnosed with ASD (autism spectrum disorder) August 2008, at the age of three and a half. Although she is high-functioning, she has difficulty socialising with other children and communicating her needs with those who care for her.

Amy is lots of fun and will seek out the company of other children if she wants it. She enjoys playing with small groups of children but gets over-stimulated very easily. It is important her energy levels are tuned into. Her day needs to be broken up into high-energy activities and quiet activities.

Perceived rejection or an inability to understand the rules of a game can trigger Amy. Often the adult looking after her mediates between Amy and other children. Children can be encouraged to speak calmly to Amy and to break down instructions/rules. She learns really well visually and can follow the lead of other children if they are patient with her. When other children get frustrated with her, just explain that Amy is learning how to play and needs their help.

Sometimes Amy has a very big air bubble and will react if children come into her space. She will also invade other children's space inappropriately. If she starts pushing she is communicating that she is unable to cope in a situation. If you see this going on please separate her from any children around her. The sooner she is distracted, the less likely the behaviour will snowball. A quiet corner she can go to works really well if she needs to chill out.

Amy likes to talk and can converse with children and adults if they are able to meet her at her level. Her conversational skills may not be on par with her peers so please be patient. Her words and sentences don't always make sense but it is important she feels heard and understood.

Amy needs a lot of guidance whether there are other children around or not. She needs direction with toileting, eating, and getting dressed. The strategies for these often change so I will keep you updated with where we're at. We have many social stories you are welcome to use that cover the areas Amy needs help in.

Sometimes it is clear Amy needs to burn off some energy. High-energy activities Amy loves include climbing, riding her bike, and running around with a small group of children. Often these hyper activities need to be followed by a quiet activity. Manic laughter is a big sign that she needs to slow down for a bit. Amy loves baking, painting, and drawing. These are all great things to do if she's feeling tired, anxious or overwhelmed. She also enjoys puzzles and reading books. She loves her sets of toys and has a My Little Pony collection, and dog and cat toys that she enjoys sharing with others.

If Amy has been pushing/kicking/hitting other children she is indicating she is on the verge of a meltdown. This means she is overloaded and desperately needs to go to a quiet corner to decompress. This is often a result of an accumulation of events unrelated to her current environment. Sitting with her quietly gives her the space to cry if she wants to. Often Amy will hold on to feelings and may even lash out to those who are in her care. If she starts hitting you just asking her if she is sad or angry about such-and-such can sometimes help her get in touch with her feelings. A DVD works really well in home settings as it seems to distract her from the anxious state she is in.

You can take a look at http://www.autismnz.org.nz/ for more information about ASD. I also update a weekly blog http://helpmemummy.blogspot.com/ about raising a child with ASD from a mother's perspective.

Thanks for your support and understanding.

Lynda

Aren't we all just a little bit autistic?

2009-04-14T12:46:00.000-07:00

Is it me or has autism been hitting the news quite a bit lately? We are either growing in our awareness of autism, there are more children/adults being diagnosed or perhaps it is a side-effect of life in the Western world.

You do have to wonder.

Modern life puts extreme pressure on us all from a very early age. Our education system is set up to have us "ready" for life as young adults when we finally get to leave. But in that time, from the preschool years all the way through to college, we are not-so-gently encouraged to be a certain way across the board so we'll "fit in".

Put your hands up if school was a positive experience for you. I bet there were some teachers/kids/classes you weren't so keen on. Personally I have a real mix of memories around my school years. College/high-school was pretty much a big thumbs down for me. But I have some fond memories of my primary school years. There were certainly some elements of conformity I struggled with all the way through.

Let's face it, no-one really likes being told what to do and how to be. Perhaps those on the autism spectrum feel it more strongly than the rest of us. I can think of several occasions when I've wanted to break free - from corporate culture, and societal expectations impinged on me.

I'm somewhere between being an introvert and an extrovert which means I sway between seeking company and craving solitude. Too much of either extreme sends me off-balance. I can totally identify with my daughter around being frustrated with sharing space with others I'd rather not be around.

I may not be autistic but I have my own communication issues to grapple with. Lets face it, relationships can be hard work, no matter how you are wired. I tend to walk on egg shells around people so I admire my daughter's directness (although telling your friend you want to hit them isn't the kind of thing one should say out loud).

Think of all those times someone has ruffled your feathers the wrong way or just irked you, just because. It makes sense to me why my daughter hits/kicks/pushes those she's had enough of.
I'm not saying I condone her behaviours - I just get them.

Children on The Spectrum simply reach boiling point faster than typical children. Just this afternoon my daughters playdate turned to custard rather rapidly as she was already feeling overloaded. The TV had been on for a while so I thought it would do us good to go out and get some fresh air.

Originally we were going to go to the local petting zoo but the girls were clashing so badly, we decided it was best we saved our money and opted for a simple bike-ride up the road. As typical of ASD children, my daughter tends to invade other children's space a lot. Some children let this slide but not this particular friend who inevitably responds by exploding into a tantrum. Their dynamic is Amy will tease by putting a hand or foot in her friends space and her friend will scream blue murder. Amy will inch her hand or foot closer and closer until her friend loses it. Amy deals with this outburst of emotion from her peer by either pushing/hitting/kicking. Once this point has been reached Amy will continue to strike out and all attempts at separating the girls are normally in vain. Many a playdate has ended abruptly with one of us having to go home.

So we know what these two are like together. But today my friend and I perserved through gritted teeth and got the girls to the local playground. A change of scene didn't help and things steadily got worse. Eventually Amy was at the stage where she was laughing manically (an indication she is on the verge of a meltdown). So home we went and the TV was switched on again shortly afterwards. Sometimes it's just easier to stay in!

How much do I share

2009-04-08T13:53:00.000-07:00

I'm sure many parents of special needs children grapple with how much information they should share with the outside world. I have been quite protective of Amy these last few years, just sharing her diagnosis - and for many months an impending diagnosis - with those closest to us and those it was relevant to.

But now, as Amy leaves afternoon Kindy and starts morning Kindy next term, I have had to swallow my pride and go down the road of educating not just the Kindy teachers and specialists who are involved with Amy, but also the parents of the other children at Kindy.

Why do I feel I need to do this? Because I think educating others is the only way we as parents can expect others to gain an understanding into ASD. These children of ours on The Spectrum are misunderstood frequently. Because most of these children physically look like typical children, they are expected to behave the same way.

It has been my experience that three years at Playgroup in which Amy was diagnosed (yet suspected to be on The Spectrum) resulted in many misunderstandings with other parents. A lot of the autistic traits resemble outright bad behaviour. I was critised both behind my back and openly for Amy's out-of-control-behaviour.

At afternoon Kindy at least I was able to forewarn the Kindy teachers that Amy was in the process of being diagnosed. So from the start she was treated as a child on The Spectrum. I shared this information with a few parents when I felt it was appropriate.

I now think all parents of the children at Morning Kindy have a right to know there is a child with ASD starting next term. So I have asked Amy's Kindy to include this blurb in their next newsletter:

INTRODUCING AMY
My daughter Amy is starting Morning Kindy this term. Last August she was diagnosed with ASD (autism spectrum disorder). Although she is high-functioning, she has difficulty socialising with other children. She is lots of fun and enjoys playing with small groups of children but gets over-stimulated very easily.

Perceived rejection or an inability to understand the rules of a game can trigger Amy. Sometimes Amy has a very big air bubble and will react if children come into her space. She will also invade other children's space inappropriately. If she starts pushing she is communicating that she is unable to cope in a situation. If you see this going on please alert a Kindy teacher. The sooner she is distracted, the less likely the behaviour will snowball. She has a quiet corner she can go to if she needs to chill out which she has been using when required at afternoon Kindy.

Amy likes to talk and can converse with children and adults if they are able to meet her at her level. She likes talking but her conversational skills may not be on par with your child.

Although she will have a teachers aide, she will need a lot of understanding and support to continue to thrive at Kindy.

You are very welcome to chat to me personally about ASD. However if any issues should arise, please talk to one of the Kindy staff.

I have a special needs child

2009-03-27T12:55:00.000-07:00

No doubt every parent of a child with a diagnosis struggles at some point with the "label" their child is given. I have. We have as parents. And our extended family have also - and still do - struggle to get their heads around the ASD diagnosis because for a lot of the time to the outside world Amy appears to be "normal."

As a parent I have had to recognise and accept that raising a child with ASD is not easy work. Parenting itself is full of challenges and I am not undermining that. But parenting a child with ASD comes with a whole lot of other challenges. Parents of typical children often comment that they wish there was a manual for parenting. There might not be, but there are lots of resources out there to inform, educate and advise parents of typical children.

I certainly wish there was a manual for parenting the ASD child! Autism New Zealand is the gateway to a wealth of information and resources on parenting the ASD child. I haven't tapped into much of it at this point. Mainly because I am on my own journey as a Mum in accepting that my beautiful blonde-headed and blue-eyed four year old has special needs. Special needs that no matter how much time and energy we put in will be there for life.

Obviously there are worse conditions out there than ASD. But being on the higher end of the autism spectrum comes with a whole heap of issues that we are still unravelling as parents. Now that Amy is four years old I can look back at the last four years and appreciate how much time and energy has gone into parenting her. Her "special needs" have exhausted, frustrated and stumped us many a time. Yet we have carried on, determined to give Amy the best start in life as possible in these precious preschooler years.

We have done well as parents. I hear that a lot. But I think part of parenting a special needs child is getting to a point of acceptance that outside help is both needed and necessary. We have specialist input. There are neighbours and friends who are able to watch Amy if I need to go for an appointment. We have respite care in place but it is irregular in nature and not quite filling the gap I think we need to help us care for Amy.

Time as a couple has slipped down the list as parents of an ASD child. It is not Amy's fault. I am not implying that. I am just pointing that she has been our main focus, and by the time we've factored things like work, gym-work-outs and committee meetings etc into our week, there seems to be little time for us. Try as we might to be more creative around how we spend our evenings together, it is hard to do much more than blob on the couch together.

I have clicked recently that this is our life. That life with an ASD child will continue to be filled with challenges - often daily ones and so as a couple we need to find a way to make time for us, otherwise we are in danger of there not being an "us".

Thanks to the recession, I am in the process of looking for more work. This has meant looking into appropriate care for Amy - probably in the form of a nanny. It wouldn't be more than twenty hours a week and I'm not sure we can cover it yet I am still investigating funding. Believe me this has not been an easy decision. I have prided myself in being an at-home Mum for four years, never working more than ten hours a week, and working it out so that my husband was always able to look after Amy.

I think perhaps it is best for all of us if we do get a nanny. We have some great extended family support from a distance but not the physical hands-on support some families may have with special needs children. So I suppose employing a nanny could be a way of bringing in another member of the family to help us care for Amy while we go out and earn the bacon as such.

I was the nanny of a child with Aspergers Sydrome myself many years ago so today can appreciate why I was employed. It wasn't just so there could be two working parents. It was so the parents could have a break. These are children with social difficulties so I think it is a positive thing giving them the opportunity to bond with another adult. I couldn't have considered this before this point but it all seems quite timely. Amy will be at morning Kindy soon and at school in a year, so perhaps some time bonding with another adult will help prepare her for long school days in which Mum won't be around and she will have to turn to others for support.

Reaching a place of acceptance and understanding that I am the Mum of a special needs child has been quite big for me. I don't mean to use that label as an excuse for her - or me as a parent either! I'm not implying that Amy is limited in her capabilities either. It's not about that. It's simply that she does have special needs that are beyond that of the typical child - needs that are a challenge to meet and read. As any mother of an atypical child will attest - Amy is indeed so very special in her own right and in many ways. That is the flipside - she may have a diagnosis to live with, but she is Amy to us and to all that love and know her.

Tears for Amy

2009-03-19T01:28:00.001-07:00

Ever since I attended the local autism courses (the week before last), it's like the emotional flood-gates have opened. I am processing so much around accepting Amy's fate while at the same time parenting Amy and dealing with all that her diagnosis means.

I have been afraid for Amy's future. Talks of bullying on the courses didn't help. Apparently those on The Spectrum /with Aspergers are at risk of being picked on, made fun of, and being the butt of silly pranks. Buddy systems and safe places were offered as ways to counteract this. But still.

Amy has just been through a rough phase at Kindy. It was very timely that her IP (Individual Plan) meeting was last week so I could sit down with three Kindy teachers, an early intervention teacher and someone from CDS (Child Development Services) and nut things out. Some changes have been made at Kindy and things seem to be improving. Even so that session was hard to attend. I was grateful for it and it was necessary. But it was all about Amy's negative behaviours so a teachers aide can be applied for when she moves to morning Kindy (next term). It was hard as a Mum to sit there for an hour and a half with five education professionals focusing on all the problems Amy has at Kindy.

For a few weeks at Kindy Amy's behaviour was just getting worse. She was chasing, pushing, and kicking other children a lot of the time. The end of the session was when Amy typically lost it. The teachers start packing up, while the kids get more hyped up and the general vibe is downright chaos. This lack of order sends Amy into a spin. So the easiest thing to do has been for me to simply pick her up a little earlier, before tidy-up time, and take her home.

A quiet corner is set up for her at the beginning of every session which she is encouraged to go to if she's demonstrating that she needs her space. Amy has responded positively to this and has gone there willingly when asked.

The Kindy teachers have also started tracking her amongst themselves, ensuring that Amy is involved in an activity at all times. She needs the adult guidance and company a lot of the time to stay on task and if this need isn't met, she will take her insecurities out on the other children.

All involved are confident that the move to morning Kindy will be positive for her. It is pretty obvious she is bored socialising with three year olds at the moment and craves the social direction and confidence four plus year olds will be able to provide.

Tomorrow Amy turns four years old. She had her fourth birthday party last weekend which went really well. She had a Wiggles-themed party with eight children in attendance (ten if you include Amy and a nine month old baby) and around fourteen adults. Admittedly I was a little anxious as to how things would go given Amy has been in pushing-mode lately when in groups of children. But she was fine. Absolutely fine. I have to pat myself on the back though for organising a party that would met her needs for order and also didn't hype any of the children up too much!

It was two hours long - starting at 10am and ending at noon. I hired a community hall that wasn't too massive - a perfect size for a group of twenty. On arrival there was an activities table set up with Wiggles pictures to colour in, and another table with face-painting so the children were all clear they were either colouring or waiting to have their faces painted.

Once a few children had their faces painted they made their way over to the party table which was set up all ready to go with a heap of Wiggles stuff. Around 11am the cake came out, we all sung Happy Birthday to Amy and then the music was turned up loud for ten/fifteen minutes of Wiggle dancing. After this the children were directed to the activity table where they made featherswords out of a cardboard cut-out of a feathersword, glue and some feathers. We finished the party with some stories in an allocated story-corner (that had books there the whole time in case any of the children needed some quiet time).

I think being the parent of a child with ASD has some advantages. I am good at preempting the behaviour of most children as I can read where they're at through their body language. Yes I'm patting myself on the back again because a lot of the time as a Mum of a daughter on The Spectrum I feel incredibly challenged. Gut instincts have helped a lot but there is still a lot of guessing and experimenting that takes place and things can go horribly wrong.

There is also a lot of spoken and unspoken pressure from the specialists involved once your child is diagnosed with ASD. Some of the advice and suggestions I have agreed with - but some of it I haven't. Amy got referred to a district nurse via CDS because she is still in nappies at lo and behold - four! The actual appointment with the district nurse was awful. It was an hour of being told how to toilet-train my daughter with no consideration or interest as to what we've tried - and why it hasn't worked.

Amy has suffered from constipation for a couple of years at least and the severity of it varies. This hasn't helped with toilet-training. I've always thought her high anxiety levels haven't helped things much in this department. This feeling was confirmed when it was mentioned at the autism course that toileting issues are common for those with ASD.

Amy's back on medication to help her at this point, and I am monitoring her food and drink intake, making sure she gets enough exercise (she needs a fair bit) - basically doing everything I can. Yet I will not take my daughter out of nappies while she struggles to get a bowel movement. I think that is incredibly cruel - but it is what was suggested by the district nurse. An example of a professional who doesn't understand the complexities of ASD. It took us around a year to get her to wee on the toilet and she still needs a lot of prompting. So no doubt pooing on the loo is a little way off.

I do want to get Amy out of nappies asp. I don't want her to be ridiculed or to feel like she's the odd one out socially. She's typically nappy free during the day though. We have a year to get her sorted before school which is my personal time-line for getting a few things on track.

Amy had her last bottle of milk the other day. Once again, a few days off four might seem late to wean your child off a bottle but I prefer the gentle approach with a child who has enough struggles. Maybe I'm a soft touch but I generally check in with Amy before whisking anything that makes her feel secure away. I bought her a new cup for her night-time milk and she is adapting okay. She's missing the bottle but getting there.

I feel a lot of frustration, angst and worry around Amy's ASD and our support crew (of specialists). Many of the support crew are still getting to know her and I've had to allow them to in their own way and time which has sometimes been hard - watching them misreading her or missing big cues that she needs some help.

Because of financial reasons, I am looking at increasing my working hours (currently just working Sundays) which causes me a lot of emotional confusion. I really don't want someone else looking after my Amy as the truth is - no-one knows her quite like I do (except for her Dad of course). But I'll cross that bridge when I come to it.

For now I'm grateful Amy had a good day at Kindy today, a fantastic fourth birthday party and that she's moving forward. I may have tears for Amy but I also have a lot of pride.

Give them the space they need!

2009-03-08T19:48:00.000-07:00

I drove past a billboard today that read Don't burst their bubble, give them some space. It was directed towards drivers of course. Yet it is certainly applicable to those on "The Spectrum".

The whole thing with my daughter is about getting the right space at any given time. Amy can handle being close to other children and seems to enjoy the chaos of several children playing in a small space together. How long this will last is anybody's guess. The first push is a sign that she has exposure anxiety and wants to get out of there. Yet instead of just removing herself, she will carry on actually physically pushing children out of her massive air bubble until someone - usually me - removes her. Except for last week when she told her friend Tina on a playdate that it was time to go home! We've been telling her to use her words: at least she was honest! Tina stayed for another forty-five minutes. Amy asked her to leave another time and when she didn't she started pushing Tina. I was impressed that Amy was able to tune into herself and recognised she was sensory overloaded - she did warn Tina several times before the pushing started.

My husband and I both did Celeste Littek's course Introduction to Advanced Strategies: Implications for Learning last Thursday. It was very good and covered everything you need to know about autism. Basically it saved reading fifty or so books or researching for hours on the Net. Celeste is a great speaker. She has over 20 years of personal and professional experience in ASD and knows her stuff. She currently works with the wider community in developing training courses for those who care for children with ASD. There were 84 on our course and only a handful of parents - most were educators/teachers. The parents were nodding their heads in recognition of some of the autistic traits and the educators gained an invaluable insight into the world of autism. Amy's Head Kindy teacher sat next to us which was great. It was interesting for her to learn a little more about Amy pre-Kindy.

In a way the course was like a summary of our journey thus far with Amy. It was emotional. I am still processing some feelings that were stirred up as a consequence of the course. Some say they go through a grieving period when their child is diagnosed with ASD. However I didn't. I just got on with it, and did what I had to to help Amy. I had a lump in my throat a lot of the time when dealing with specialists for the first few months, but I just carried on. Now I feel like I am a bit of an emotional mess as I acknowledge what we've been through as a family while carrying on with the ASD challenges that are part of our lives.

On Friday I also did the Introduction to Advanced Strategies for Autism Spectrum Disorders. This was also taken by Celeste and was great too. But admittedly I was still reeling from the course the day before so found two days of autism courses quite emotionally taxing. The second course basically named a lot of Amy's ASD traits - and helped me understand them more. Both courses confirmed that Amy's diagnosis is correct and that we are on the right track towards helping her. A woman I met on a business course a couple of years ago sat next to me. Her son had been very recently diagnosed although he is a bit older than Amy. She had the tissues out and I told her not to worry, that I had shed a few tears myself the day before. It certainly isn't an easy course for parents to do.

I do agree with Celeste's message which is not to change the child with autism - but to help them. Apparently this is what the autism sector has said. They know they are "different" - but they don't want to be one of us!

It takes a lot of energy for the child with ASD to act the "appropriate" way socially. Celeste said to think of socialising as a second language for these children - it's not easy for them to use, doesn't come naturally and when they are stressed - it is going to be very hard to understand what they are saying - in their own language. No wonder the poor things get frustrated.

Amy has a lot of people in her face right now egging her along so she can fit comfortably in her social world. Yet I know she feels the pressure. It hit me how pressured she was feeling when after an anxiety-filled morning at home with us, her parents, one morning - she completely relaxed with our neighbours (our respite carers) when my husband and I went out for coffee. I realised there are no major expectations put on her there and that she can just cruise around and hang out with the three children aged seven to eleven years old.

Home should be a sanctuary and I've been trying to recreate that for Amy.I have been playing a lot with Amy - nothing new there, I've always played with her. But I've been role-playing and speaking through her toys. It is exhausting for both of us at times. So I'm endeavouring to allow time in our week when the two of us can just "be". I feel I have a certain amount of pressure on myself to keep Amy's progress moving along. When one of the specialists came into our home the other day and forced Amy to look her in the eye while physically moving her head I had enough of it all.

Amy has several social stories now. They are effective yet I'm aware they could be over-used. At the beach the other day, she was paddling in the water in her clothes. I told her not to go out into the water any further and she said "Yes Mummy" followed by "Write a story about that? The beach?" Obviously she has picked up that the social stories are basically about correcting unwanted behaviour! She is on to it more than we realise a lot of the time.

I'm looking forward to a meeting on Wednesday with the Head Teacher at Kindy, the early intervention teacher, CDS (child development services) and myself to make some goals for Amy for her next year before starting school. I will be calling the shots. After doing Celeste's course I feel it's important that Amy isn't pushed too much. Celeste did share how her nephew had post-traumatic syndrome as a result of some negative interventions and I could see how that would happen. I don't want Amy to feel like she's not good enough or that she needs to change. All I want to give her is some direction socially so she can fit in as naturally as possible with her peers.

All autismed-out

2009-02-26T17:57:00.000-08:00

Phew. It has been one of those weeks with Amy and her autistic ways. She has had a wee head cold this week and this has triggered her big-time. I suppose none of us are on our best behaviour when we feel poorly. This is especially so for Amy.

A lot of her more hostile behaviours have exhibited themselves this week. At Kindy she was pushing, hitting, pinching and even attempted to bite another child. Her Kindy haven't seen her in full flight so it was kind of good she showed her true colours as such - especially as they (via the Ministry Of Education) are applying for a teachers aide for Amy when she moves into morning Kindy (around mid-May).

As her Mum, I can read Amy like a book. I can pre-empt a lot of her behaviour. In fact, managing a child with ASD is mainly about being several steps ahead of your child. Sometimes it is like living with some kind of a child-God. If conditions aren't set up in the way they want them, or people aren't responding in the way they'd like them too: they lose it big-time. Of course it's all a lot more involved than that. A lot of it has to do with the fact that the ASD child is unable to put his or herself into anothers shoes. This makes just about every social encounter very difficult.

Tuesday morning I went to the Nelson/Marlborough support group meeting for parents with ASD/Aspergers children. It's the third meeting I've been to. Yet this was the biggest one - there were approximately sixteen adults present. The other two times I took my daughter but this time I left her with a friend. Just as well as it was a rainy day and there were no children present. I am the newbie ASD parent on the block making Amy the youngest child with a diagnosis. Amazingly a lot of the children had a diagnosis made quite a lot later in life. However the founder of this particular support group set it up around twelve years ago when she her two children were both diagnosed with ASD. I am very lucky as a parent that there is so much support out there.

I stayed for an hour at the support group. It was very casual - just parents talking to one another. It was interesting meeting other parents. But like anything, just because I have something in common with someone else; it doesn't mean I'll click with everybody. Antenatal classes spring to mind - another situation where random people are thrown together because of a common thread.

I find talking to others who have some experience with autism can open up a big can of worms. There are so many theories around why it exists, for example. And every parent is going to differ on how they choose to manage their child with autism. Just in an hour the gluten/dairy-food topic came up, mainstream versus putting a child into a special education class (more for children with low-functioning autism) and when was the best time to tell their child they had autism/aspergers. (There are some lovely children's books around on the topic, apparently).

As I say, I am a newbie Mum of a child recently diagnosed with autism. Six months post-diagnosis and I am just getting my head around the support available. I'm taking it all One Day At A Time. I'm not ready to get into it too deeply just yet.

I have been reading excerpts from How to live with Autism and Asperger Syndrome: Practical Stratagies for parents and professionals by Chris Williams and Barry Wright this week - given to me by an early intervention teacher. It's very interesting but even all that information was a bit of autism-overload for me this week. I related and identified with a lot of what I read and this was both a relief and a bit upsetting. There are examples of children with autism and aspergers in the book and I found it hard seeing my daughter in those children. Especially older children, still struggling. I have tried not to think too much about Amy's future and to just work with what we know today. But I have been a bit churned up this week around Amy starting school in a years time. She will be mainstream but I am worried her social delays may cause a few problems for her (without Mummy holding her hand!). This is our aim for the next year: to get her prepared for school as best as we can.

I got an email from Autism New Zealand this week indicating that actress Jenny McCarthy was going to be on Oprah talking about her son who has autism. I watched the show but didn't agree or identify completely with the message coming through. No doubt there is some controversy around whether autism is something a child is born with - or whether it is brought on. Jenny strongly believes a vaccination caused her sons autism. She is also a big advocate for dairy and gluten being taken out of a diet for a child with autism. She's written a book about her story and does say that her ideas may not work for everyone - but it's worth a try.

Like I say, I'm not in a place for exploring autism too deeply right now. I don't actually care why my daughter has autism. The fact is she does! All my time goes into helping her socially. We play together all the time and I organise regular one-on-one play-dates. She also goes to Kindy in the afternoons and goes to Music once a week. The point is, she is out there socialising like any other preschooler. She just needs more guidance than some.

What I understand about autism - and all I need to really know for now - is she is simply socially delayed. Because Amy looks at things in detail, it takes a little longer for her to see the bigger picture. Yet she is moving forward in leaps and bounds right now. Sure, a lot of inappropriate behaviour happens but she is getting there. She has friends, seeks out other children and has fun socially. That tells me she is doing okay.

I'm choosing to just deal with what is right in front of us instead of focusing on why-did-this-happen. This week has been proof to me that too much information about autism just does my head in. My fight against autism is simply looking at my child and working out what she needs to achieve to "fit in" socially. A lot of my time and energy is centred around play. I get down on her level, and spend a lot of my day on the floor when we are at home and we play, play, play. Sometimes Amy will initate play. For a long time she would simply line up her toys in rows. But now the toys are coming out of their rows and are starting to talk to each other. Other times I will set up more complex games such as using play money and setting up a toy shop. The more we repeat these games, the more she starts to play them on her own, with less guidance. Her play is evolving and that is all the proof that I need that her social world is shifting.

Progress six months post-diagnosis

2009-02-18T17:53:00.000-08:00

Amy was diagnosed with ASD in August 2008. She started Kindy a week or two ahead of getting a diagnosis and I warned the teachers immediately that she was probably on "the spectrum". After several months of "shadowing" Amy at Playgroup, because of some of her anti-social behaviours, I was a little anxious as to how she might go at Kindy.

Amazingly she took to Kindy like a duck to water. The teachers have worked so well with her right from the start, encouraging eye contact and gently coaxing her into "circle time". She started the first term sitting in a yellow chair on the outskirts of circle time, observing the other children. Her good friend from the same street and former Playgroup, started Kindy just three weeks later and joined her on another yellow chair! The teachers started moving the girls chairs closer and closer so they were virtually in the circle on their chairs. One of the teacher's suggested it was time for the girls to join the circle one day without the chairs and Amy has never looked back. She joins in the actions now in circle time and often sings the songs at home.

Amy is thriving at Kindy. She loves the space, the range of play areas available and the gentle yet consistent guidance she is given by the teachers. She has made one new friend at Kindy - a little boy and has bonded with a couple of the teachers. She is very active and often plays in groups of four or five. She spends a lot of time roaming around Kindy with her neighbourhood friend. When I was on parent help the other day I overheard them having a wee conversation in which they were asking each other their names which was quite sweet.

Amy's confidence at Kindy just grows and grows and this is showing in other areas of her social world. She was in gymnastics classes for a couple of terms last year and used to just do her own thing, totally oblivious to what was going on in the classes. By the end of her last term she was listening to instructions and participating in more of the class. At the supermarket it seemed as if Amy didn't hear the cashiers talking to her. When they'd ask her a question she seemed a million miles away. Yet these days they cannot shut her up! and she happily helps the cashiers scan the groceries while giving a wee commentary on what each item is for.

Amy now says hello and goodbye to guests coming into our house although a little prompting is still needed from time to time. Eye contact is a lot more frequent. For so long she used to just carry on with whatever activity she was engrossed in, seemingly disinterested in who had just walked through the door. Now she will approach visitors not long after they have entered our home, and will chat easily with them.

Amy has had two regular playdates since she was eighteen months old. These continue and both families are understanding of her diagnosis. There are often issues on playdates yet Amy has improved considerably over the last few months. This is thanks to Kindy and the support of an early intervention teacher and child development services (CDS).

We've used a few social stories over the last few months around choosing an activity to do, toileting and a routine while on holiday (in a different environment). All of the stories worked very well proving that Amy is a visual learner. The what-shall-I-do-now visual cards in which Amy could select something to do from six photographs of toys and activities in her bedroom worked well. Often Amy is at a loss as to what to do next and this has helped her think more about what she'd like to play. Lately she says she wants to play such-and-such without looking at the visual cards which is great.

At the end of last year she was using a potty for wees but wouldn't go near the toilet. However with the use of a toileting social story, she made the step from potty to toilet and is now nappy-free during the day - except if a poo is obviously on the way. This was achieved with a lot of patience and prompting with many of her toys at home going to the toilet ahead of her. Now she is increasingly going to the loo by herself although she needs to be reminded a lot of the time. We have yet to get her on the toilet to do a poo.

We were away for a month over Christmas catching up with family. In Ruby Bay we had our own little cottage and this worked really well for Amy. With the use of a routine social story, our days had some structure to them. Amy enjoyed making choices on what we could do next and also recording via visual cards what we'd done in the day. Having our own cottage meant Amy was able to escape when she needed a break from the main house. Even with her cousin staying in the other house, Amy frequently retreated to the cottage to play with her toys and to have some me-time.

The proof was in the pudding when we stayed out at Ruby Bay again a few weeks ago but stayed in the main house without the routine visual cards. It was harder work for me as Amy found it hard to relax without a small space she could retreat to. (She could have gone to our bedroom but didn't seem interested). Without the routine visual cards our days seemed disorganised and this upset the apple cart for both Amy and myself. Bottom line: the routine visual cards will be coming on all trips from now on!

We also caught up with family in Auckland for a week in the New Year and although it was a lot of fun (as there were four children under six in the same house), it was rather stressful for myself and Amy. Amy's need for space couldn't be met as were staying in quite a small house. Two of the other children were particularly loud and are still a WIP around sharing themselves and this triggered Amy on many occasions. She was yelling, kicking and hitting a lot more than usual. I know it doesn't take much to over-stimulate her so I was able to take her out one afternoon to a cafe - just her and I. This trip proved to me that on longer trips, it's better we have our own accomodation. One or two nights are okay with other families but any more than that is pushing it for everyone.

Not everyone of course understands ASD and I have been very appreciative of the understanding and unconditional love Amy has received over the last six months. She knows who she is safe with. It is often her fear and uncertainty in social situations that cause her to retaliate in what is typically unacceptable behaviour. But over time, as my husband and I decipher what is ASD behaviour from what is preschool behaviour - or even her personality; we are able to educate others that interact with her frequently. I feel the greater understanding of ASD with those Amy knows has caused her to relax a lot more around them. Like any child, she just wants to be accepted and loved for who she is.

Overall, Amy is moving forward in leaps and bounds. When she first started Kindy she was parroting a lot and speaking only a few words. Now she speaks in sentences and although she still parrots a bit, she also constructs her own sentences. She is able to converse and answer simple questions and continually surprises us with her amazing memory. I have to thank Kindy, early intervention services and CDS for her progress. I know my husband and I have contributed to these very positive changes but as they say - it takes a village to raise a child - particularly one with ASD!

Six months post-diagnosis

2009-02-11T00:02:00.000-08:00

After Amy was diagnosed with ASD it was kind of like "Now what?" for us as parents. We were given a folder from Autism New Zealand from the paediatrician. It was filled with a wealth of information and I wasn't sure where to begin. However once I started looking out there at what was available this big new world geared towards helping those with autism began to emerge.

The first thing I did was attend a support meeting at a local cafe. These are organised nationally through-out New Zealand by Autism New Zealand. However it was just me and another newbie who attended. It was great to meet another Mum with a child with autism. Yet it was quite disappointing that we were the only ones who turned up. I tried again a month later and this time two different Mums turned up. They both had children with ASD who were both older than Amy yet it was interesting to hear where they were at a couple of years down the track from we were. I will be going to another meeting at the end of February (they are held monthly in Nelson).

Late last year I also attended a Mulled Wine and Massage evening for parents of autistic children. The idea being to learn simple foot and hand massages to pass on to our children. This was organised by Autism New Zealand in conjunction with Altogether Autism. It was there that I met a Mum whose daughter was exactly the same age as Amy, also diagnosed with mild-ASD. There seemed to be so many parallels between our daughters that it was only natural to exchange phone numbers. The girls had a Playdate over the Christmas holidays for a couple of hours out at my Mum's in Ruby Bay and it was interesting to see how they related to one another. Amy was more verbal than the other girl but she is also more aggressive - kicking, pushing and hitting as she often does when she is overwhelmed/overstimulated and generally just over a situation. But all in all the girls got on quite well.

I found out through the paediatrician that we were eligible for both a child disability allowance (CDA) and respite care. I went into WINZ, filled in some forms, and took Amy's diagnosis notes with me and we were immediately signed up for $81.46 a fortnight. This is not means-tested. The CDA is proving to be very useful for all the additional resources and courses that seem to part and parcel of having an ASD child.

We got a referral regarding respite care through the paediatrician and within weeks a letter from Support Works indicating they were coming round for an assessment. This is simply someone to give us some help with Amy. As any parent of a child with ASD will attest; they are very exhausting children to care for as so much energy is needed to guide and support them. A woman from Support Works came into our home, asked quite a few questions and then granted us twenty hours of respite care for a year.

All we had to do was elect someone we could leave Amy with. We elected our neighbours who live right behind us. They have three children aged seven - eleven years of age and the Mum is a teacher's aide who is currently looking after a severely autistic child at the local primary school. It's perfect. Amy loves going nextdoor (they have a trampoline, a sheep, rabbits, a dog and a cat) and when I left her for her first half hour alone last week I could hear her chattering away non-stop to the Mum. I have a form that is to be sent off at the end of the year clarifying how many hours were used. Our neighbours will be reimbursed at this point.

We will use respite care so we can go out as a couple and for any circumstances in which we need to leave Amy with someone else. Although there are a few adults she knows, most have children the same age or younger which means it is difficult for whoever is watching her.

Child Development Services (CDS) were the first organisation post-diagnosis to make contact. The paediatrician also referred us to them. One of the staff came into our home a couple of times to assess where we were at and what further help might be needed. It was agreed that some help in the Kindergarten would be most benefical.

Amy started Kindergarten about the time we were mid-referral to getting her an appointment with a paediatrician. Once the diagnosis was made and Amy had been at Kindy for a couple of months at Kindy, the teachers were on to it writing a letter to Special Education so an early intervention teacher could come into the picture. They had to kerp a behavioural diary and just after a few weeks at Kindy it was evident that were a few social issues that were of concern.

The early intervention teacher has been into our home three times, asking questions about Amy and playing with her to see she where she is at. She has started observing her at Kindy on a weekly basis in order to determine whether or not she will need a teacher's aid at morning Kindy. She is doing so very well at afternoon Kindy but the teachers fear a longer period of time may result in some disruption from Amy towards the other children when she moves into morning Kindy (which should be within the next three or four months).

Mid-March I am meeting with the Head Teacher at Kindy, the woman from Child Development Services and the early intervention teacher to form a plan for 2009. I am also doing two day-long courses run by Autism New Zealand in March (they cost $30 each per person). The first is called Understanding the Autistic Spectrum: Implications for Learning and the second is Introduction to Advanced Strategies for Autism Spectrum Disorders. I have also requested to do the Early Bird programme which is free for parents of under fives - to get them ready for school. I had to send off an expression of interest form - there isn't a guarantee that we'll get to do that one as it is dependant on numbers.

We recently joined Autism New Zealand (for a $20 donation for a year) which means we will be in the loop regarding upcoming courses, support group meetings, as well as access to an extensive libary of books, audio tapes and videos/DVDs.

Really the last six months are a bit of a blur. It has taken me a while to get my head around whose who with all the specialists - as well as deciphering what their roles are. But it's all starting to make sense. They all want only the best for Amy. We are lucky that she is not yet four years old and she is entrenched in the system. She may not understand what is going on around her yet at the same time, Amy has felt more secure in her social world thus far with the support of all involved.

Getting a diagnosis

2009-02-08T12:06:00.000-08:00

It was when Amy was three years old that the alarm bells really started ringing with me that something was amiss with her socially. I had worked with a boy with Aspergers in Vancouver, Canada many years ago and the older Amy got, the more her behaviour seemed to match his.

Generally children under three play in "parallel play" - which means they play alongside each other, but not with each other. So although I'd noted some slightly concerning social behaviours with Amy before the age of three such as a lack of making eye contact and a general disinterest in children and adults around her, I wasn't terribly worried.

Around the age of three it was obvious to me that socially she was struggling. She was starting to show an interest in other children yet seemed to have a very enormous air bubble around her that most children were naturally quite oblivious to.

This caused a lot of problems at Playgroup in which there were around fifty families in a very crowded setting. Toddlers who roamed through her area of play would often get a huge push because they were in her space. The same behaviour occured in any settings where there were other children - playgrounds, playdates - anywhere. With this she seemed unable to pick up other children's body language and would often invade their space or cause havoc in a game that was going on that she didn't understand. This would typically result in the child involved in getting frustrated and Amy would respond to the frustration by hitting, shoving, or kicking. Her speech was delayed and this only added fuel to the fire.

The only way I could make Playgroup work was by "shadowing" her and pre-empting her behaviour. It was suffocating for Amy and exhausting for me. We tried sticker charts to reinforce positive behaviour but it was questionable as to whether that even worked. Basically I ended up leaving quite early most visits from three years of age onwards as soon as any of her "negative" behaviour occurred. She'd been going to the same Playgoup from the age of six months as well as weekly Music sessions and Playdates. This wasn't about a child who wasn't used to being in a group of children.

After several weeks of this behaviour at Playgroup The Head Teacher there agreed with me that I should get Amy checked out. The first step was going to Plunket for an assessment. She was due for one anyway since she was three years old at the time. The Plunket nurse agreed I should explore things further and wrote a letter to our family Dr. The family Dr also agreed there were issues and referred Amy to the Paediatric Department at Nelson Hospital. It took a few months to get an appointment, but at three years and five months Amy was assessed and consequently diagnosed with a mild form ASD. (autism spectrum disorder). This was in August 2008.

The appointment was about an hour and a half long and entailed me answering lots of questions. I knew she was on the high-end of "The Spectrum" (as it is called) for autism - meaning that she didn't have all the characteristics under the autism umbrella and that developmentally she was right on track, if not above average with learning the alphabet, numbers and colours for instance. If her speech hadn't have been delayed she would have been diagnosed with Aspergers.

Amy also went to audiology around the time of her diagnosis being made where her hearing was deemed to be almost perfect. But the test wasn't completed as it was quite an intense half hour for any three year old. She'll be going back sometime soon for another test. There is nothing to worry about with her hearing at this point.

Amy started at Kindy around the same time as getting a diagnosis. She was close to three and a half years old and thanks to her diagnosis and the support of her teachers, she is thriving at Kindy.

Amy's back-story

2009-02-07T23:26:00.000-08:00

Right from the start Amy has needed a lot of skin contact from me. She was breast-fed til she was three years old and I knew it was more for comfort than food for probably the last couple of years. As a newborn she slept very well then around the age of four months she stopped sucking her thumb and she lost her ability to self-sooth. Things were never the same again in the sleep department.

For many tiresome months I attempted putting her back in the cot after coaxing her to a settled state on the couch that was in her bedroom. But she would often wake just two hours later, seeking more comfort. I researched and got lots of advice around sleep issues then finally decided to give her what she was asking for - the warm of her Mum's body at night.

I have believed all the way through that Amy has needed me close to reassure her that all is okay. It is now, six months after Amy's diagnosis of ASD (autism spectrum disorder), that her strong needs for comfort and support from baby to preschooler make sense. Autistic children have trouble regulating their emotions and battle with high anxiety. I always thought as a baby Amy was struggling with some kind of anxiety and was afraid of being left alone. Crying it out to force her to come to grips with it all and face her fears felt so, so wrong, But I did try it only to have Amy get herself so worked up that it took hours to settle her down again. So I did the opposite of what is recommended by many, and allowed her to have as much support as she needed from me as her Mum - day and night. I'm glad as I did as now at almost four years of age she is sleeping through the night a few times a week. It hasn't been an easy road; but it has been the right one for Amy.

Amy was a baby who wouldn't go to just anyone. She clung to her Mum from a very early age. However as soon as she started walking (at the age of twelve months) it was clear she was quite the adventurer. Over time it was also apparent that she more interested in her surrounds than people. None of her toys have ever been a waste of money!

When our antenatal class met for coffee dates Amy The Toddler would be off exploring while the other children pottered around, not interacting, but looking at each other with interest. She was always on a quest and happy doing her own thing. When her peers were starting to stay "hi" and wave bye-bye, Amy seemed oblivious that both children and adults around her were attempting to make a connection with her.

Visiting the supermarket with Amy The Toddler often resulted in no response from her when the check-out lady asked her a question. As was typical of Amy at that age, she would look into the distance as if she hadn't heard anything. Often it was remarked that she was "shy." But I knew she wasn't. With the confidence she had exploring I knew that it was more disinterest than shyness. She just didn't seem to want to connect with those around her.

I started two regular playdates for Amy around the age of eighteen months. I thought perhaps the one-on-one playdates might encourage her to connect socially with some same-aged peers. I also thought we needed to build up some support systems around us should Amy need to be left with someone else. For quite some time I did child swaps with the other two Mums. I think it did Amy a world of good to get to know two other little people at quite a young age. She now at almost four years of age has two good friends as well as a handful of other same-aged peers she sees frequently.

Around six months of age Amy started going to Music classes and to Playgroup. As soon as she could crawl she was off exploring. Once again she was more interested in her surrounds than the other children. After months of chasing her back into the circle at Music group she started to grasp the concept and join in circle time. She came to love the songs, the dancing and the musical instruments. However half an hour was often a stretch for her and she made it clear when she'd had enough - it wasn't hard to read when she was overstimulated.

We enroled Amy at the local Kindy at two years of age, expecting her to get in at three. However there was quite a long waiting list at the time and she didn't get in til she was three and a half. It was obvious that she had out-grown Playgroup at three years and this was illustrated by her behaviour. It seemed whenever a child entered her space (which is an air-bubble of forever varying size!), she would push, hit or kick that child. Eventually this became a habit and whenever Amy saw a child, smaller than herself, she would automatically lash out. The only thing I could do to monitor her behaviour was to "shadow" her around Playgroup. We tried sticker charts to reinforce good behaviour ie: no pushing/hitting/kicking at the end of a session. Telling her not to push/hit/kick resulted in a blank look. We'd say "Be nice to people and animals" and she'd repeat the words yet didn't seem to understand that she was actually hurting other children. Explaining children felt sad when she hurt them didn't register for a while though thanks to a great book I found in the library When I Feel Sad, Amy does have some comprehension of why she and also others might feel sad.

Our attempts at controlling her behaviour at Playgroup didn't transfer to other environments so it seemed the message got lost. eg: she would still strike out at a random child in the playground and lashed out at one of her friends younger siblings for many, many months.

The family cat also went through his own share of torment. "Nice pats" and "gentle" seemed like wasted words for a very long time. Hurting others almost seemed to be something she found funny at times; it was sometimes more than a form of self-defense. She lashed out at us, her parents, as often she was angry and unable to express that. We've been encouraging her to "use her words" for a very long time, and now she is starting to say "I am cross" and express herself more. To deal with the hostile behaviour we tried time-outs which often resulted in Amy purposefully peeing herself in her time-out spot. If we put her in the hall she would scream until she got herself really worked up and at the same time wasn't able to comprehend why she'd gone out into the hall. Quiet time in her room was and still is the only form of discipline that seems to work - apart from distraction which I would say would be the parent of an autistic childs key weapon!

Since starting Kindy at the age of three and a half, Amy has made some huge improvements in her behaviour. A change was very good for her as were consistent rules and children older than herself that were able to role-model appropriate social behaviours. She stopped consistently teasing the cat, and laid off her friend's younger sibling and stopped targeting toddlers out there.

However six months down the track at Kindy, Amy's peers have changed so that she is now one of the eldest children in the afternoon sessions. She is clearly bored and a bit lost without the social guidance she needs from children a bit older than herself. She will be moving into morning Kindy in May which I think will be very good for her. At the moment she is acting out at Kindy because the three year olds there are just as socially inept as she is! There are not many children there who are able to initate play. This has brought out some of her extreme behaviour that we haven't seen for around six months. But luckily one of her old friends goes to Kindy and the girls tend to hang together a lot.

Right from the start I have followed Amy's lead. I knew she was perhaps wired differently to other kids. But I did what felt right for her/us - and didn't follow any traditional, Western parenting guidelines. A lot of it felt wrong with Amy and I didn't agree with it. I didn't enjoy the age comparisons that came with antenatal class catch-ups and eventually the group fizzled out anyway - though we still catch up every now and then. It seemed if your child didn't sleep through the night at six weeks, wasn't toilet-trained by two, or in a big bed, sleeping on her own as early as possible - things weren't faring too well. I never felt comfortable with the one-size fits all kind of parenting and Amy's needs certainly reinforced this for me.

I had worked as a nanny with a boy with Aspergers for two years in Canada many years ago. The older Amy got, the more I thought how alike this boy she was. At eighteen months her social disinterest was highly evident. Her regular playdates with the two girls changed this and eventually she became more interested in interacting with other children. But there were issues. Not just with the social stuff; it was also the way she was at home. She resisted toileting training for a long time. We often went two steps forward and one back. There was no picking the right time because she was "ready." There was a lot of coaxing and pursuading involved. Lollies didn't work nor did stickers. She just wasn't making the connection. Although we finally got her on the potty to do wees, it wasn't until we used a social story that she graduated to the toilet.

Amy was a late-talker. She moaned and groaned to us even as a toddler and often would drag us around by the hand if she wanted something. It seemed to frustrate both her and us that she wasn't able to verbalise her needs. This didn't help on the kicking/hitting and pushing front. One time when visiting some friends of ours who had three boys at the time (they now have four); the youngest came out of the room bawling with a very clear bite-mark on his arm. Amy was pre-verbal at the time, around two years of age and in tears herself. No adult was in the room with her yet it was obvious to us that one of the boys had tried to take her toy dog off her. She didn't know how to say no, felt overwhelmed and bit the boy. Not acceptable behaviour of course - but understandable.

Instructions had to and still have to be broken down to Amy's level. I cannot say when I thought there was something wrong. If anything it just became more and more evident that she was wired a particular way and I knew not many people understood that - and that I wasn't been a paranoid first-time Mum! I understood my daughter's needs that were very intense. One time I succumbed to peer Mum pressure to put Amy in a creche while I went for a swim. It is my only regret thus far in parenthood that I did that because I knew, just knew it wasn't the place for Amy. I have known for a long time that she needs the one-on-one connection with an adult where-ever she is. As an under-two, it simply traumatised her to be left alone with a whole bunch of kids and babies and if you ask me, two very inexperienced first-time Mums who were running the creche. When they returned her to me in the changing rooms I could hear her screaming "Mummy!" long before they entered the rooms. Her trousers were off, her face was covered in her morning tea and she was hot, bothered and shaking. For six months prior we had been able to leave her quite happily with another family in town. However we couldn't leave her with anyone for a good four months after that incident. It look a while to rebuild the trust.

Another friend had her same-aged child in the creche too and her child was fine. She's the kind of child you can put in a room and she will entertain herself and graviate to others. No wonder Amy freaked. All the things that aggravate her autistic traits were in full swing in that creche - chaos, no one-on-one attention, and her needs clearly weren't met. Apparently she started crying long before they brought her to me and they only brought her out because she was disturbing the babies (of the two first-time Mums running the creche). Grrrr! It makes me very angry to recall all this from almost two years ago. A bad experience for myself and Amy but I learnt from that. I have always trusted my maternal instincts since then - no matter how contrary they are to common advice out there.

As a baby while breast-feeding Amy used to wrap her fingers around my then long-hair. This continued all the way through the breast-feeding days. She now still holds tightly on my hair when she is overwhelmed or is seeking extra-comfort. This is one of several cues I have that she either wants to get out of a situation or needs some quiet time with her Mum.

It was the Head Teacher at Playgroup who said she'd seen a lot of children in her time and that every now and then once stood out. Amy was one of those children. She agreed one hundred percent with me that I ought to get her "checked out." Even though my gut was telling me I was right, it was her support that gave me the courage to start the ball rolling.

I have worked with many special needs children over the years and have a BA (Psych) in Education and Psychology. I have always treated children as individuals first, disorders second. Although getting my own daughter diagnosed wasn't easy, it was a relief as it has given us something to work with. I have always accepted Amy for where she's been at. Yet a diagnosis has helped categorise a lot of her behaviours which means we have a team on board to help us.

For me I am so pleased that we have raised Amy as Amy this far - and not tried to force her to be something she isn't. Her needs have always been met; even if they have been quite intense for us as parents.

Introductory post

2009-02-04T17:39:00.000-08:00

I have decided to start a blog about life with our mildly autistic daughter for a number of reasons - mainly because I feel it would be useful for friends and family (and whoever else is interested) to gain an insight into Amy's* inner world (which is obviously reflected through her outward behavior).

We are lucky to be surrounded by supportive family and friends who sincerely want to understand her diagnosis of ASD (autism spectrum disorder). It takes people who are in contact with Amy a while to understand her behaviour because at first she seems "just like any other child." When I've often tried to explain her autistic characteristics on the phone to people who haven't seen so much of her; they cannot understand what I am talking about. "My child does that" they say when I describe her behaviour.

The thing is, an autistic child, especially one who is mildly autistic like Amy is like any other child in so many ways. She just needs more guidance, patience and understanding than some simply because to her some things socially don't make sense and therefore she may act inapproprately. I will elaborate in further posts about how she is wired.

I want this to be an interactive blog. I want friends and family (and anyone else who is interested) to email me questions and to post comments. I will happily answer anything you want to know about ASD.

Amy will be four next month and I do not want to discuss her autism in front of her any more. We have a family trip coming up in three months to Hamilton/Tauranga to catch up with friends and family. Amy will be in contact with lots of children and if I can describe some of her "ways" on this blog, before we actually see everyone, I think it'll give all those we will be catching up with an insight to ASD.

If you want to know more about autism have a look at The Autism New Zealand site - it's very informative. There is obviously a heap of other information available on the Net.

This blog will be written from a Mum's perspective only. It is certainly not a blog to be relied on for up-to-date information about autism. The blog name "Help Me Mummy!" is a call I often get from Amy said in desperation whenever something goes wrong. Yet she cries out to me in many other ways such as by pulling my hair or hitting me when something has overwhelmed her socially. I feel it is my job/our job as parents to help her fit into the world outside our home as naturally as possible. At the end of the day, all she wants is to feel included and part of her social world - just like the rest of us.

*Amy is not my daughter's real name but is the name I have given her for the purposes of this blog.