I have decided that over the next few posts I am going to try and share some of my experience of Asperger’s and how we learned about it, and eventually i suppose, share the tips we found which helped Fionn to become as resilient as he has. The story so far, as it were…
when Fionn was diagnosed with Asperger’s at first, he was very young.
Our decision and it was a CONSCIOUS decision, was to keep Fionn in a mainstream setting, and that we would compromise on the more specialized ASD education available in Special Schools, for his ability to integrate as fully as possible within a mainstream existence. We realised that choice would be a trad off – chance of managing in normal society versus a very supportive safe environment. We opted for the harder, but long term better option – we hoped. This was TOTALLY new to both of us! You’d imagine having trained as a teacher, and at that time being an experienced teacher, was an enormous advantage…it WAS NOT. I didn’t even recognise that he was having difficulties. Not until school sent for us….
The earliest days were spent, deciding that this diagnosis, didn’t TELL us what would be happening to HELP Fionn out educationally. He had speech, so we didn’t have any immediate issues about medical treatment, but we wanted to be as INVOLVED in helping our son as much as we could. This child, at this time could not mix with other children….other than extremely close family and friends….not even ANY hope of him remaining in room with his cousins. He would physically stand at the door of a room full of family – UNABLE to come in, and say “Helen, I need you!” – and i would have to leave to see what the issue was. When he heard the front door, his reaction was to retreat straight away to the playroom….turn his BACK…and ignore as much as was possible, any visitors in our home.
At the time of diagnosis, the Primary School Principal, who thankfully was the first person to suggest the condition AUTISM, she also said, at his answer to the teacher when asked to go and play with X, “but I can’t!” . Bridie said maybe he is just a child who is extremely shy, or as i prompted ODD, but i pointed out that we were NOT the child seeing at home. There was a small close circle of people with whom Fionn was the life and soul of the party!
So the diagnosis arrived…
with the number of hours of assistance he was entitled to….
and we had a son with Asperger’s Syndrome.
So I did the me bit – i always try to understand it. I know i wanted (as a then teacher) to KNOW how to help my son understand:
- how to make friends
- how to be less anxious
- how to know when to take turns
- how not to keep repeating the same task over and over and over again…
- why knocking down some boy’s tower of bricks wasn’t funny to anyone except himself.
- to be able to answer a question
- to leave the house without both hands full of RANDOM objects.
- to be able to do what others were doing.
- not to reverse visible as we were going into the classroom
- not to toss another child when he needed something from behind them
- how NOT to have to go to the toilet every time it was story time, so that he would be able to sit beside the teacher
- how to not have other children pipe up and say “i don’t want him beside me!”
- so that he could say when he was upset rather than explode like a pressure cooker
- to have him invited to ONE birthday party!
- to be able to manage to draw with a not-PALMED grip
- to not trip over most days somehow.
- how neetles hurt – even though he couldn’t feel that!
- to be able to cope with a change in routine
and to help me know what to do as his mum…i had NEVER been made aware that i was teaching anyone with Asperger’s syndrome – so i knew nothing about it.
So i read, and read and read.
I read Tony Attwood.
i read about Temple Grandin.
i scoured the internet.
All of the sources told me about this “triad of impairments”….i didn’t give a TOSS about that! i NEEDED specifics – specifics METHODS to help Fionn. I couldn’t find any.
i eventually looked into the INSET – the Educational Courses that Teachers are offered on ASD and AS. They also were basic. Starting with the “What is autism”.
- How did that tell a teacher how to HELP a child?
- the Parents courses i found also were so basic.
- should i scold my child?
- should we protect him? when he looks lost? when his mouth twitches?
- do i force him to make eye contact?
- do i apologise for his clumsiness in advance?
- justify him to other parents?
- should i allow him have his own way?
- who was going to give me the answers?
- do we take him form school on a day he gets upset?
- rang autistic outreach- do you help?
- privately did invest in OT for motor skills
I did at one stage find a book about “Aspergers in a classroom” – at least it had strategies on play..parallel play, then teacher plus Fionn plus another, teacher gradually backing out…that was it!
footprints on the floor
ALERT cards to hold when needed help.
how the hell was THAT going to make my child cope? make my child normal? was that IT? was that what my child GOT as support?
and then it changed.
i realised that this confused, sad, lonely wee boy was MINE.
I HAD to translate his “i am nervous” body language for teachers
i HAD to think up ways that may help him using his “SPECIALIST INTERESTS”
i HAD to watch him- so closely and learn about not Aspergers, but HIS ASPERGER’S – the traits that would make the world understand HIM.
i couldn’t expect a school to teach my child how to do something that i couldn’t understand in him.
he was at school for 5 hours or so a day…
he was MY SON 24 hours a day….
so OBVIOUSLY the greater responsibility to help, was mine
i had to become HIS TRANSLATOR…translate the world for Fionn….and Fionn for the World.
and so began our education of Fionn.
to be continued….