its Helen here.
a PARENT TIP blog.
Fionn has had a phenomenal or Fionn-omenal experience blogging over the last week.
He had been asked to blog by AspergersAdvice.org and its director Adam Harris.
Fionn loved the thoughts of telling people about himself and how he manages.
But the response it got, about the articles he wrote was overwhelming. A lot of the comments we received were from parents maybe at the early part of the diagnostic system, enquiring how he found out he was autistic, or how he managed so well at school.
So have decided it may be reassuring to tell you other parents, that we are not educated formally in autism – but at an early stage when meeting with a covering Paediatrician, when i was encouraging Fionn to sit still, I said “Fionn, come on up here and sit beside me….Dr X is an expert in ADHD!” – the answer was genius..“Why? Does he have it?” .
Even Fionn realised that the only real expertise on your child, is that of the child, and your family!
So i suppose, that has always been our view – it isn’t an arrogance, or a claim that we won’t need help, but we KNOW our child…as you do yours. You know which boxes on the asperger’s triad of impairments he ticks, or doesn’t. You dont need an educational pyschologist to tell you that your child is different.
It would be lovely and simple if with the diagnoses you got a “how to raise your child” leaflet..but then it would mass produce all our children. They all have their own specialisms to offer.
Fionn was assessed at 4 – when he couldn’t mix , had dreadful motor skills, was a total baby in a class of his peers. When i read the evaluation now, and see the UNLIKELY decision in the corner, i am amazed at how it was missed!
We knew he was different – he didn’t understand social cues, didn’t mean to toss people over, but if they were between him and the DVD player, he didn’t see any alternative. He couldn’t come into a crowded room. Yet when he was with his own family, he was a happy, free, giddy child.
When we called them quickly back to assess Fionn – he was statemented as having Asperger’s syndrome….was just about 6.
I left school- was teaching at the time – part-time as i knew we needed more contact with Fionn. When i came back with the diagnosis, my department colleague put her hand supportively on my arm and gave a look and an “oh Helen”. I answered, “he doesn’t have a terminal diagnosis! We just have to figure life out for him!”
Fionn would have been too immature at diagnosis to understand what was going on, so i would say he was 7/8 when he asked one day why something had happened in school. We decided that was the time to tell him….again….had never planned a date, or a how to, but seemed very natural…we chatted Fionn, very casually about his difference.
We told him,something along the lines of…. that you know you sometimes don’t see things and do things the same as other people, and it confuses you, well guess what NOW we know why. You have asperger’s syndrome – you remember all the questions that the psychologist does…well they show ways of thinking etc, .
it isn’t that there is anything wrong- it just means you are wired differently.
if all kids go to do join the dots, they go 1,2,3,4,…you might go 9-10, 28-27…but eventually you get the picture finished too…its just you do it a different process.
While we have a super paediatrician, who we see annually, we decided that since we lived with Fionn 24/7 – we and HE – are the only true experts, and its really been how we have worked through everything.
We listen to him and watch him, and then figure out imaginative ways to help.
I think given the response on the blog this last few days, i may put up some of the examples of the contact and the input we have had with education all the way through Fionn’s years in school.
Rather than demanding teachers go on a generalised course on Autism, we give them a detailed note on Fionn- how he is, what he finds tough, how to read him, things which may prove a problem…that worked really well – in both Fionn’s and schoolf favour, so we updated it annually.
So will post an example here shortly and hope that is of some help..
but i personally would tell anyone to tell your own child- do not leave it to doctors…you see it how he is , how he needs to wait, how he needs to navigate his way through situations…
and NEVER do we wish Fionn was different than he is.
we have as a family gained a very special experience through raising Fionn.