Tuesday, 29 March 2011

Role Models.

I met a woman today who I wish I was like. I met her today at a social communication group for autistic kids. The purpose of this group is to help kids communicate better, to help kids who are maturing cope with being different, being autistic.

I'm sure some of us have had that moment where you meet someone who is either awe inspiring or someone who embodies all the qualities you wish you had.



A has been finding things difficult of late and is struggling with the pace and intensity of Primary Seven. So I sought out some courses he could do to help focus him a little more and to help improve his communication skills. We were lucky that just as Oh Daddy and I were realising that his frustration levels were on the increase, that we finally got a place at a social communication skills workshop run by the LEA's SALT department. We will attend ten workshops in total missing a fair bit of schoolwork in the process and I'm not particularly looking forward to wading through piles of work at home with him. He finds school so stressful at the moment that he begrudges homework in his time.

Now I won't lie to you, I always dread these things and I dread them for two reasons: how A reacts to the group and how I react to the group. As a pupil at a mainstream school, emphasis has always been on A fitting in, blending in to the mainstream crowd. Previously, when we have attended any events full of autistic kids, he finds it really stressful. The kids frighten him and he reacts as if they are oddballs and that he has no place being there. I'm not sure whether it is due to being exposed to the more demonstrative autistic traits of other kids coupled with A having sensory sensitivities or that it is only when exposed to other kids with ASD that he sees something of himself in the others and doesn't like it. As for my reaction, I am always horrendously embarrassed by A's reaction and I always feel guilty that A when compared to other kids on the spectrum is not as severe as the kids who usually use these resources. I know that that is daft but through campaigning for different charities I know people who do not have access to groups like these, kids who really need it. I know that A needs it, but I also know that out there in the local authority there is a child with more complex needs than A who doesn't have access to this.

Now anyone with a child at school with additional needs will tell you that nothing is ever easy and nothing ever comes your way without a fight and the same is true for A. For months I have been fighting to keep his learning assistant hours for the transition to High School and am still waiting on more hours for Primary Seven but given that we're nearly at the Easter break, there is no way I am getting them. One of the most frustrating things about dealing with the officials who hold the purse strings and who sign all of the paperwork is that they look at A in relation to other kids on the spectrum.

Now the official line here in Scotland is that additional support needs are supposed to be tailored to the individual and in fact the campaign run by the Scottish Government is entitled Getting it Right for every Child, where the packages of support a child receives is coordinated to their specific needs. There are two problems with this. Firstly, the Scottish Government has not put the funding into the education department to provide individualised support despite it now being against the law not to provide the support a child needs. Secondly, because my child suffers from a developmental disability that is measured by a scale he is constantly compared to other children with the same disability but at another point of the spectrum. I am sick of hearing the phrases from both professionals and parents alike; 'he's not really that autistic' or 'he could be worse'. Yes, I know that I'm very lucky that he is not more autistic, that's he's not the full Rain Man but how does that help him? Does this mean that he is less entitled to the help that the specialists, his educators think that he needs? Apparently so.

Anyway, I have digressed into a rant. But it is precisely these ranting, frustrated moments that make me wish I am like this other mother. While she probably has had her moments like this and internally could be one big  giant mess, externally I will describe to you what I saw.

She was smiling, bubbly, outgoing. He grasped my hand and shook it firmly, maintaining eye contact as she told me her name and then introduced me to her son. She spoke in a louder tone as she addressed her son, to whom it doesn't come naturally to engage with other people outside of his own world. She visibly compensated for his lack of social awareness and his interest in others. She spoke to A, again engaging eye contact as she asked him his name, what school he went to and if he liked school. He gave her one word answers, fidgeted the whole time and was clearly uncomfortable maintaining her gaze. It was then that I realised my own behaviour, my mannerism are starting to mirror A's. As we do not go to these things often I was out of my depth, uncomfortable in my surroundings and a bit apprehensive about the kids we would meet. Even after all these years, I still find it hard to talk to a kid who doesn't like eye contact, who fidgets, who might have visible autistic traits, nervous of their reactions to me and to the new environment. The guilt about my unease means I find it hard to maintain eye contact. Not spending any time with ASD kids and their parents means that I don't know how to act when I do, I worry about appropriate behaviour and the appropriate things to say so much so that I fail to engage with the parents or the kids. This other mother, she took it all in her stride asking all the right questions of the professionals. Reassuring, checking with her child that this new situation would be okay, that he could manage it. She kept repeating his name so that he knew in all of the melee that she was addressing him. I hung back from all of this, gently squeezing A's arm when we were motioned into our separate rooms and hoping that he would understand that my nod meant that he would be okay and that I would be outside if he needed me.      

I am unclear as to whether I have always been like this or not. I don't think I was. People would describe me as outgoing, mad, loud, funny. I've lost track of the point where instead of supporting my child through social experiences like she did, instead of compensating for his traits in a social situation, I began to mirror his behaviour.

I know I have to change but how...?

2 comments:

  1. I worked as an ABA Tutor for about 6 years before venturing into teaching. I am still very close to the family I worked for and they have been really successful in their battle for support in mainstream. Their son is now 14 and they live in West Lothian. I can put you in touch if you like. His mum is pretty well known in Scotland as she is behind lots of campaigns for the education right of children with ASD.

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  2. That would be great, Claire. I need to start exploring new ABA strategies now. We used the ones that worked at the time and stagnated a bit. Would you recommend anything for A's age (12). X

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