I Don't Always Have The Answers

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

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

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

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.