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Sunday, 10 February 2013

Different, not less.

This week it hit me. Hit me hard.

Our little girl is different.

Of course I've known that since her diagnosis of autism/ ASD (Autistic Spectrum Disorder) 3 years ago, but I think I've spent all that time trying to put a brave face on and pretending it doesn't mean that much at all. Well meaning people tell me she is doing fantastically well, and it's true, she is.

She is still different. She does not fall into those boundaries of 'the norm'.

Of course that doesn't matter to me; I wouldn't want her any other way. She just wouldn't be Sasha any other way. I intend to pave her way in life as best I can, so that she never sees it as a problem.

That is of course wishful thinking. In reality her understanding may not yet have caught up to that of her peers, but it is still developing all the time. In my heart I know there will come a time when she realises she is different, and life will become very difficult for her. Her path will be undoubtedly more bumpy than that of children and adults who do not have special needs. All I can do is be here for her, love her for who she is, and hold her tightly any opportunity I get. 

I've caught up with myself enough to realise that the here and now is of course very important, but that we should also be considering the future. I learnt my lesson from the nursery who were not prepared to help (read my post about that here ); there should always be a plan B. Just in case.

Everything is going well for her at school. The staff have been fantastic - caring and flexible. Sasha has not refused school yet, which was one of my biggest fears in the early days (see my old post Too Young to be a school refuser?).

'Yet' is the key word. Sasha does sadly often refuse to conform in school. She needs to retain 'subtle control' in order to be able to function. As we have learnt from research on what we believe her diagnosis should be (PDA Pathological Demand Avoidance *) - it's not that she won't, or she can't, but that she 'can't help won't'. She just can't help it. That's a difficult one to get your head around. It basically means that there are generally outside influences why she won't participate - too much noise in the room, too many instructions, fear of failure, lack of understanding. Often several of these factors at once.


So anyhow, back to the future. This week I went to visit a school, which I had in mind as a possible secondary school for Sasha. She will be 6 this year, so I'm sure many of you will think I'm being a little 'previous'. My new motto, however, is 'be prepared'.

I'm not sure that Sasha will cope in a mainstream secondary. Actually if I'm being honest, I'm almost certain she won't. The sheer size and volume of most secondary schools would not suit her, and the independence they expect she may never achieve. I'm not being pessimistic, just realistic.

So I went to see a private school for children with additional needs (predominantly speech). Small class/group sizes and plenty of individual tuition based on the students' needs made for a caring school within which I'm sure there is no bullying. A part of me would love to protect her from the real world like that. The other part of me would love for her to be at the same secondary school her sister will be at. 

I found it hard to look at the other children there who were 'different' in some way and not to say to myself 'but Sasha isn't like them'. She's managing in mainstream at the moment, just. Who's to say what will happen in Year 2 when more testing comes in? Would she thrive in a specialised environment? Do I really think I'd be capable of homeschooling (the answer is no!)?

I don't necessarily want to admit she's different, but maybe I need to? That afternoon as I picked her up from school, I listened more carefully as she tried to converse with me and my adult friends. I heard the stutter and the broken sentence formation more. I noticed adults confused by her actions. I saw some children give her a wide berth, and some others make allowances for her. I saw Sasha lick the railing on the way out of school. At this point I had to laugh!

In visiting the private school I'd hoped for a solution and a concrete plan for the future but in reality all I gave myself was more questions. Luckily I have time now to address and hopefully answer those questions. It won't be an easy road to go down but I know I'll have lots of support as I do.
 

'Different, but not less.'

This is what a good friend had to say on the matter this week. It is of course, so very true. We can all learn a lot from Sasha and all those with differences. I hope her peers and all those in the school years around her will grow up to be understanding and tolerant young people. I certainly intend to do my best to help educate them and others.


*There's a great info sheet about PDA at www.oaasis.co.uk.

10 comments:

  1. I think it's brilliant that you are looking ahead so much - much better than being in a panic at the last moment: and the moment arrives quicker than you think! I find it hard to believe that my baby - aspie boy - will be going to secondary school next year, albeit one with an aspirer unit x

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    1. Ah, thanks - and really hope secondary works out well for you/him. I guess that's the toughest transition for all parents, it's just that ours comes with extra worries and paperwork eh?!

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  2. Its good you're thinking about things now. Whilst I dont want to be too negative, things can get harder as our children get older and face more social pressures. Saying that though this doesn't mean it will necessarily get harder for your daughter. With a supportive primary school you may find that she progresses enough to be able to manage a mainstream secondary school.

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    1. I look on it as being realistic, not negative. That way you're less likely to get nasty shocks anyhow :)

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  3. Steph, you are being prudent and wise in thinking about the future and exploring your options. We were heartbroken when my son could not continue in a mainstream environment, but, in hindsight, going to a 'special' school turned out to be the best thing for him. Whatever decisions you make for Sasha, I know you will ultimately do whatever you think is best for her.

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    1. Thanks Yuji. Glad that school is working out for Kai. Some children just need different types of learning, don't they? Not less, just different :)

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  4. I think there is a new (ish) book out by Temple Grandin by that very same name "Different not less" and it is so true to always remember our children in this way. I have high hopes for my son's future - but i also realise that he probably won't get there in the same way that other kids will. Interesting about the PDA because J's symptoms sound really similar but take out the elements that cause him anxiety and reduce the sensory overload and it is a different story. Well done for thinking ahead. I still don't have a clue when friends ask if we will homeschool for secondary as i never planned to originally but i guess it depends on whether anywhere could meet his needs as well as he has them met at home. When he was at school, he certainly showed the PDA symtoms and more often than not just refused to do any work. You are doing an amazing job of showing others that it is about accepting difference and being understanding. xxx

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    1. Oooh must go look for that book now! Latest thought is setting up a free school in our area.... we'll see! All is truly takes is patience and understanding to help our children though.

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  5. Wonderful post Steph! I'm so glad you came with me to see the school, and I must say, I experienced a very similar feeling to you as we walked around, i.e. "My boy is higher-functioning than many of these children". I've wondered whether, because he copies his peers, often indescriminately, he would possibly pick up the quirks of others in a special school setting, rather than increasingly "normalise" as he appears to be doing in his mainstream school? But what good would it do to keep him in mainstream, mostly to make ourselves feel better, when he'd most likely be falling further and further behind? because with the best intentions in the world, a class of 30 with minimal specialist support, is not going to be as effective in helping him reach his maximum potential as a class of 8 with on-site specialist support integrated throughout the curriculum. Lots to think about, that's for sure! Popping the Temple Grandin movie through your letter box today!

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    1. I think the way forward is ideally mainstream inclusion, but smaller class sizes is what I'm aiming to find.... in my dreams, eh?!

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