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.
Sunday, October 18, 2009
Sunday, October 4, 2009
Tony Attwood
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.
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.
Sunday, September 13, 2009
A mental health day - for a four year old
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!
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!
Saturday, September 5, 2009
Taking it all with a grain of salt
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.
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.
Tuesday, August 25, 2009
Persistence and patience is key
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.
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.
Tuesday, August 11, 2009
Planning ahead
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.
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.
Wednesday, July 29, 2009
Just breathe!
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.
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.
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