Sometimes people talk to Fionn, or they watch Fionn play and interact with others, and are very quick to say “ach, but i mean he is fine now!”...as if to say “has he grown out of his aspergers?”, or “maybe he hasn’t much wrong with him”...we have family members who really do NOT see how being an independent adult is such an aspiration and such a challenge for any child with Asperger’s Syndrome.
“he hasn’t much wrong with him” – he hasn’t ANYTHING WRONG with him!
he has- and will always have-ASPERGERS.
his wiring is a bit different that everyone elses – and why would we want him NOT to be himself?
YES – we have had to find a compromise between making Fionn resilient in a mainstream society setting, and embracing the way he is!
At times he uses his autism strengths, at other times he draws on the learned behaviour patterns he has mastered to integrate in school and in broader context.
As he gets older, the issues he encounters change, and then we have to look at other coping mechanisms.
But despite his being a great aspergers ambassador, despite his ability to give a very clear interview, describing brilliantly the way his condition affects him, and the adjustments he made, Despite the fact that he has learned:
- empathy and compassion
- emotions – beyond the basic ones
- to understand other peoples’ feelings
- how to manage friendships – most of the time
- how to read faces
- when to recognise sarcasm.
- how to decide which group to join onto .
- how to listen before you blurt out your special interest
- how to interpret “appropriate” emotions to a situation
- to appreciate the humour of his inability to understand idioms,
- to laugh at his literal tendencies – this week Jimmy asked someone to call back as “i’m in the middle of my dinner”…poor Fionn almost exploded laughing.
- to take turns.
- to make eyecontact as much as he can.
- to try not to twist his mouth or raise his shoulder when he is nervous
- to STOP calling you to see HILARIOUS clips on youtube.
- to “cope” in contact sports rather than back away – to learn positions where he uses his aspergers strengths to take part fully.
- to be secure in himself most of the time
- to be able now to hear me have the discussion INTERNALLY to convince himself to do something…the what is the worst that could happen?…when did that happen before?…so why would it happen now?…so what is your aspergers making you think?….so what do you really want to do?…so when have we been wrong?…
but there will ALWAYS be little things with Fionn. thankfully. they are a part of his charm!
little things which throw him a new situation and he is unprepared, he comes like a rabbit in the headlights.
I wanted to share with you a few social situations , a few little examples, where Fionn still needs help – these I am sure are issues and situations many of you as parents Or as Aspies recognise, and that’s why i wanted to let you see that while Fionn is a hugely successful example of how an Asperger’s Child can learn and be happy in their own skin, that he is no different than you…or your child. So there is NO MAGIC trick….it’s about finding a path through situations for you, your child which taps in on their strengths! We never pretend it is anything more than this. We love him, as we do all out children, just the way he is! And in the same way as with all our children, we want to make life for him as comfortable for him as we can and are there to help.
That’s all – it’s about being a family – of creative thinkers, with great sense of humour!
- Today Jimmy (Fionn’s dad) was totally engrossed in a Gaelic match on the tele. Fionn spoke a few times, and realised that dad wasn’t really in a chatty mood – and i tried to explain that he shouldn’t try to chat dad during the match, but that i was here… Fionn became really anxious – not in a melt down way, but in a completely unable to keep quiet and therefore ask MORE irrelevant questions, entirely random eventually as he really was on autopilot! This is a similar reaction to what would happen if someone corrected Fionn at dinner table, for something minor, he perceives it as talk to cover the awkwardness…but today he managed by sitting over with me, on the other sofa, getting the feet in under me, for compression, and eventually he himself went off and “got his pad” – a blank A4 spiral bound book, that he always has to draw in, From his earliest days he has carried a pad. Initially drawing what was a series of lines which he called a “machine” , then drawing matchstick football teams with names above them , and now having developed into drawing footballers – very linear pictures, depicting moves in a game. So today to keep himself from taking, he occupied his HANDS by sketching – so drew on another sense. By the way, his sketches are ALWAYS in black and WHITE…
- another very SIMPLE situation which we had this week, was when we had popped into town on Friday. Fionn phoned me – and i knew straight away, he was a bit uncomfortable, so had to slow him down to get the story right. the PROBLEM was that one of his closest friend had called him, and asked him to go down town. …Now what is the problem there?,,,to Fionn he couldn’t explain WHY it was a panic, all he kept saying was, “i just want to stay at home with my family today”. So i suggested he rang his friend back and offer that HE could come over here? He felt okay – checked it through “so what do i say again?”…then hung up. A few seconds later another call from Fionn,…”he says he can’t come over he has to be somewhere at 6, so now he wants to know will i go to Park and play football with him!”…again i asked what was the problem there and got the same nervous “I want to stay at home with the family in case it starts to thunder again so i can come in”……okay…not getting there yet, So i suggest “why don’t you SAY that to him, because it IS a bad day, and ask him if he’d like to pop over and that we can bring him to wherever he needs to be for 6?”….again he rehearses what he has to text and does… calls me again…that’s fine. And they spent a very relaxed afternoon playing football, watching tele, hanging out…. So just before he is left home, the friend says “so Fionn, will you maybe come into town next week?” and he looks over at me for help. So i say.! C i think Fionn doesn’t know what going into town entails? Is that it Fionn?” “yeah, kinda” So i ask him “is it a bit hang out C, with lots of people ?” he answers NO it isn’t its probably him, Fionn and M …so i suggest Caoilte too (my younger son who is so close to Fionn and reads him very well) – so now that he knows it is a few close friends walking around a few shops, he is fine.
- i think the FEAR in this one, was the same as the recent day when he got a text from an ex-class mate from last year, who invited him over to his for a barbecue. Fionn was nervous, asked me what to do, and we talked about options,…this time he was afraid it was a girls and boys event, and really is nervous of what to expect there. But that time he said to P, “would it be okay if i come the next time? “and the answer was YES – which gives him time to hear what happened and went on from others.
So there is no secret. Fionn is a great child. a happy, confident child with Asperger’s.
There is no method, no book on “what do i say when…?” for Asperger’s Parents. But for us, it has been that we have talked all the bits through with Fionn, When he encounters anew situation he comes and discusses it, and we unravel the panic, until we get to the actual worry itself, and he understands it then.
And we keep finding new issues, new situations where he is unsure and uncomfortable and he is so relieved when he resolves it, and the dread of another unknown is gone.
what if…ONE new situation is one situation learned – whatever the outcome…if it is discussed and analyses…but the What ifs will change as he gets older. For the moment they still involve us doing the debrief and untangling…but maybe someday…he will NOT need us?