Daniel is hard at work on the Wii – his concentration is terrific.
Every week during term time, Matthew & Daniel go to a special needs dance class at the Deeside Dance Centre in Banchory. Its organised by SCILLS, a local charity for supporting special needs children. There’s been a steady core of about half a dozen kids going, with a varying array of needs, though up until recently its been the boys ASDs and 3 Downs girls. SCILLs have been getting their message out there though and there’s been another four kids that have been coming regularly. I think two of them are ASD and the other two are Downs.
The great thing about the mix of special needs is that the boys have learned that first of all, they’re not alone in being different. There are others there in the same boat as them, and they don’t need to feel isolated. Its an environment where they are safe and comfortable with no one around to judge them. Second, they have learned to tolerate the differences in others. To them, the others in the class are who they are. The boys don’t see a girl with Downs, or a boy with an ASD. They see a girl with brown hair, or a boy with a red shirt. Like the boys, their special needs are just part of them. Its great to see the boys just accept other people for who they are. Its a lesson a lot of people would do well to learn.
On Saturday, it was the end of their current six-week block (another block starts next week) which meant a little performance for all the parents, grandparents, brothers, sisters and carers. Because the class is up to double figures now, there were a lot of people in the studio. The first thing that struck me was how free all the kids seemed. They recognise that they’re in an environment in which they can fully express themselves without fear of hearing “you can’t do that.” And it showed. All they could see was people there encouraging them to let themselves go, appreciating their every effort. You could see the happiness on their faces, and it was infectious. They may all have special needs, but the key word is “special” and that’s what I hope they were feeling. They are all special in their own ways, and its crucial that they be allowed to express themselves and understand who they are. It really was amazing to see their joy coming out.
It was lovely to see the SCILLS organiser come out for the performance (thanks to Jane’s blog postings on SCILLS) to see what a huge difference their support is making for all the kids there. Not only are the allowed to express themselves, but its helping them develop just a little bit more. Its been a terrific opportunity for them all, and its been grabbed by several pairs of hands. A little bit of help really can go a long way.
Yesterday was the 32nd anniversary of my dad’s death. A lot of water has
passed under the bridge since then, so I’m not going to dwell on it. I miss
my dad of course, but 32 years is a lifetime, and you just have to move
forward in the end. But it was the reaction I got from Daniel that was the
most interesting bit of the day. I’d said to him that a long time ago on
that day was when my dad died. Now, Daniel is one of the deepest thinking
little boys I know – if not the deepest thinker. He thought about what I’d
said and then started asking questions. “Did he need to lie in peace and
quiet before he died, and was he by himself?” I said yes, and no that my
mum and granddad were with him when he died. Then he asked, “Did he just
close his eyes and go to heaven?” It was such a matter of fact analysis of
it, that it immediately brought a lump to the throat. I just told him what
happened, and why it happened. He may just be seven, but he does need to
understand that death is as much a part of life than anything. Why sugar
coat it? Daniel is quite a thinker, and it would be patronising to give him
anything less than the full story.
That wasn’t the end of it though. Daniel thought about it a bit more and
said, “But he can see us from heaven and he will be happy that you have a
happy life with us.” Although I’m not a church goer, I like to believe in
an afterlife, and that I’ll see my dad and grandparents again someday. But
I’ve never passed that belief directly on to either of the boys – although
they do seem to be up to the church an awful lot at school, despite the
school being a non-affiliated school. To be honest, its not a belief that I
will discourage in either of them. Someday, Jane & I won’t be around for
them, and if the thought that they will see us again will keep them going
in the short term, then fine. Daniel didn’t stop there with his words of
wisdom. He finished off by saying, “He will be happy to see that me and
Matthew are happy being with you.” Sometimes you get angry with Daniel and
some of his behaviour, but he will come back and say the most lovely
Daniel to me is much wiser and older than his years suggest, and he is able
to say those lovely things which suddenly remind you of what a deep little
boy he is. I don’t know if its his Asperger’s that influence him in that
way. He’s a deeply intelligent boy – to the point where school seems to
bore him when he’s not being challenged – and will have conversations with
us that seem way beyond his peers. Yes, he talks about things that are in
his immediate world, but has an understanding of what death is and how it
affects us. At the same time though, he can be quite dispassionate about
it, which lets him ask the questions he does. He always tries to get to the
meaning of what you are telling him. He is so interesting to talk to! Part
of me wonders if he is a gifted child, and has special needs in that
direction, as well as his Asperger’s, but that I might just be biased as
far as that goes!
Although its sometimes easy to think about how mature Daniel seems for his
age but equally, its easy to forget how young and vulnerable he is at
times. Seeing him interact with friends when they are round at our house,
you see that he is often unaware of what constitutes appropriate social
behaviour towards them. He will think nothing of telling wrongdoers about
their actions because he finds working out the nuances of a situation that
may be telling us to keep quiet. He’s quite capable of enjoying Cbeebies
when he’s given the chance and often finds pleasure in the simplest of task
or play. He certainly is a complex little man, which this week has brought
We’re on holiday at Haven Haggerston Castle. Its perfect for the boys as they have the freedom to (almost) run riot in a safe environment. There’s a swimming pool, amusements and entertainment all on hand. I sometimes wonder if the boys will get too old for this sort of holiday but then all thanks to their ASD brains, it seems unlikely that day will come anytime soon.
This lunchtime there was a puppet show – Punch and Judy – for the kids. The boys have loved those in the past, so we thought we’d go along. There was no fear of them not being interested. As soon as it began they were both enraptured. Daniel was glued, bursting into occasional giggles. Matthew was soon on his feet, his arms flapping for Britain. From Matthew, that’s a sure sign that he’s taking in so much sensory stimuli that his brain needs to shut down for a while to allow for it to catch up and process the signals its receiving.
That aside, once again it struck me how young the boys are. Much younger than they sometimes seem. Matthew is in his 9th year yet he can still be thrilled by a simple puppet show he’s seen over and over at Haven. Daniel too. He seems much older than his years and often displays a mature attitude. As a result, its easy to forget how young he is and it takes days like today to remind us of that.
Its a timely reminder of how innocent they still are and how unready for the big world they still are. ASD children don’t see the world the way we do. We see some kids the same age as our two who are confident and self-assured. They’re able to assess tricky situations and work a way out of them. But I think that our boys are lucky (in a way) that their ASD brains allow them to still see such wonder in simple things. I hope they hold on to that for a while longer. They’re only young once!
This week, Jane took the boys’ grannies out for afternoon tea at a local garden centre as a Mother’s Day treat. Inevitably conversation turned to the boys. Now, my mum has this ideal of how the boys should be, and let me tell you, autism doesn’t fit in with that thinking. Matthew’s diagnosis wasn’t taken well, and four years on – as then – she is in complete denial. Jane said that according to her, there’s nothing wrong with the boys and they’ll just grow out of it. Either that’s showing a complete lack of understanding about autism, or its an unwillingness to face the truth. Its completely ridiculous to say there’s “nothing wrong” given all the difficulties Matthew has had at school the last few years. Its clear to us that he has deteriorated a lot, and needs much closer support at school. It got so bad that according to a retired doctor at the church she goes to – someone who has never met the boys – told her she was right, and there wasn’t a problem. Never mind that we’ve had clinical psychologists, consultants, speech therapists and other specialists assess the boys and conclude they are autistic. We’ve never shied away from the truth, and are quite open with others who ask why they act the way they do.
Apparently though, one of my mum’s friends’ grandson has been diagnosed with autism. Now, that’s nothing to be ashamed of. In fact, Matthew is quite proud of the fact that he’s got a special brain! But Jane said when she was telling the story, the word “autism” was mouthed, and not even whispered. Why? Is there anything to be ashamed of? Would staff and other diners have thought anything less of the boys? It was disappointing that it came on Autism Awareness Day. Its sad that even on a day where we should have been shouting from the rooftops about autism to make sure all the myths around it are dispelled, that autism was clearly considered a taboo word by someone who should be supportive of the boys. Like it or not, they have a lifelong developmental condition that will affect them for all time. There’s nothing we can do to change that but its down to us to do all we can to support the boys. Being in denial will help no one.
The trouble is that although I know the boys’ gran (my mum) loves the boys, sometimes its hard to say. My mum attends her church every week, and is forever going to meetings there. Jane said she said the boys are her life. Sadly, we’ve lost count of the times that she said she couldn’t come over because some irrelevant meeting at the church was that much more important. One of the things with our lads is that when a plan is made, they lack the flexibility to understand that might change. So, we’re careful that when we make plans and tell the boys, those plans are carried through. But we’ve had occasions where we’d told the boys grannie was coming over only for me to get a message to say a church meeting had come up that she just had to go to. Try telling that to two ASD boys. The only conclusion that they could possibly reach is that the church is more important than they are.
I do wonder how many people there know the boys are ASD. Its hard to believe that anyone in denial about it will be freely telling other judgemental people that her grandchildren aren’t “normal.” Well, if people are going to be like that, who cares? Our boys are lovely, and autism has made them who they are. We’ve not wasted time wishing things could be different. We’ve just love them and get on with coping with the challenges that autism throws our way.
You soon realise that to make it through, you need a close support network. Those closest to the ones with an ASD should be giving unthinking and unwavering support. It says a lot when you can’t count on close family to offer the support you need. After four years following diagnosis, with Matthew deteriorating, if the diagnosis hasn’t been accepted by now, I think it never will be. That won’t stop us from trying to get the boys’ gran to see the autism light.
I’ve blogged before about the diagnosis process we went through with Matthew before he was diagnosed with an ASD in early 2010. An 18 month journey to that point from when we first raised our concerns with our GP had been a long one, and just like that we had become autism parents. Its a bit like being an “ordinary” parent but with extras. You know you’re an autism parent when your child wakes up at 2am every night and screams the house down. If you get them back to bed within an hour, you’ve had a good night. That soon takes its toll on its own, and you feel like a zombie in no time at all.
There’s more though. You learn to cope with the meltdowns that can come on in the blink of an eye. All you can do is try to keep your child safe. That’s fine when you’re in the house. But all us autism parents will know what its like when our little ASD child melts down in public. You don’t need to look. You can feel the disapproving stares from passers by. You’re just a bad parent who can’t control a misbehaving child. I bet we’ve all had that one. Fortunately the stares are all we’ve had. At least no one has tried to give us “advice” That’s part of becoming an autism parent. Having a thick skin is optional, but it does come in useful. Like when you sit in a multi-agency meeting during the diagnosis process listening to M’s teacher put it all down to bad parenting. It can be quite satisfying to wave the diagnosis report in their face telling them, “I told you so!”
We learned to never leave Matthew to his own devices. I mean, you can trust a child not to open an upstairs window and try and climb out, right? Leaving him in the bathroom was a non-starter. Standing on the edge of the bath with wet feet might be great fun for Matthew but not for us! Our ASD lad had – and has – no concept of personal safety. Whether its in the house or out of it. You end up protecting them as much as you possibly can. It might see, like overkill, but when they’re quite happy to wander off with strange children because they can’t recognise the dangers in that you realise that they need that extra bit of protecting that “ordinary” children don’t purely because they can recognise danger signs.
Fighting Matthew’s corner at school has been a big part of being an autism parent. Battles with education authorities is something all parents of autistic children need to come to terms with. Often the school won’t see the kind of behaviour you have to deal with while they’re at home. Like our aspire Daniel who is well behaved at school while often being in constant meltdown at home. You get the feeling the school just feels like you are making it all up. Its seemed that way with Matthew, and its only this year that he’s got the support he so desperately needs. It comes a year after bullying of him was basically ignored until he snapped and belted the bully. I still say,, “good for him but who was effectively punished? Of course it was the poor boy M hit. There was no recognition of how hard Matthew finds school, both in the classroom and in the playground.
Helping Matthew negotiate these social minefields is hard work in itself, and he needs constant reminders – several times daily – of what is and isn’t appropriate behaviour. Its all these things that come naturally to neuro-typical children that we as autism parents have to deal with. Eventually you develop coping strategies to deal with our ASD kids and move on. Suddenly you realise that hey, your child doesn’t have meltdowns because you’re the bad parent professionals who should know better have tagged you as. No, you realise that your child is managing to cope with life because you’ve become good at being an autism parent. Its not what Jane and I had in mind when Matthew was born, but its what we’ve learned to deal with. I’d not change Matthew and Daniel for anything. Autism has made them the children that they are and on Autism Awareness Day, we need to recognise that fact. Autism hadn’t damaged our ASD children. Its made them the people they are. Its what we do as autism parents. We learn to help them to give them a chance. Here’s to you ally autism parents out there. Have a great Autism Awareness Day!