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
As parents of SEN children, being with them every day we get used to their at times quirky behaviour and to us it soon becomes “normal” – whatever that really means. Whether its Matthew’s flapping, Daniel’s spinning, its just part of what makes them the children they are. I guess we become blind to all the little things that they do.
With that in mind, it often comes as a little shock when any stranger takes notice of their behaviour from a position of ignorance. Maybe seeing a behaviour in isolation, its easier for them to leap to a conclusion and make a judgement without considering any potential root causes. We all do it I suppose, although with having ha to deal with Matthew and Daniel for 6+ years, we’ve become a bit more sensitive about it all.
Yesterday I had a little reminder about how it can be. As I said the other day, we’re at Haven at Haggerston Castle near Berwick. Its great for the boys and has a fabulous amusement arcade that can often lead to sensory overload with all the bright lights and loud noise. The boys are often so anxious that they can seem impatient to get to all the games they want to play. The ability to wait patiently just isn’t in an ASD kid’s DNA. Waiting in itself can be very stressful. On top of that is Matthew and Daniel’s inability to interpret social norms such as giving others personal space and for example time to fully complete an activity and get clear of it all.
On top of that is Matthew’s excitement of seeing others being involved in an activity he enjoys. Whether or not he knows the participant is irrelevant. He just gets right into it. Like yesterday when the boys were waiting to use a virtual ride game in the arcade. Matthew was right at the side jumping on the spot in anticipation. The second the ride was over for the kids on it, Matthew tried to get on. He can’t tell its “normal” behaviour to step back for a few seconds. Its usual behaviour for him though and I don’t really give it a second thought other than to remind him to wait a second. Well, the mum of the kids on the ride didn’t see it that way. She glared at Matthew then looked right down her nose at me and said, “They’re eager beavers, aren’t they?” An innocent comment perhaps, but indicative of a lack of consideration and understanding. To this lady, they were just impatient boys who would give her kids the chance to get off the ride. I could have explained about why autism means they don’t understand about patience, but decided to shrug it off and said, “aren’t they?”
Perhaps she didn’t mean anything by it but you can get used to that lack of consideration from people on the outside looking in. As parents of ASD children, we’ve all been there. Its a hidden disability and people tend to see only physical disability and don’t consider mental health issues. Our kids look “normal” so any unusual behaviour is put down as bad behaviour. Its times like those when you are reminded how different your children really are.
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!
In our house we have a number of pets. The more exotic of those (no
disrespect to the boys’ fish) is our 3 turtles. This week though Jane
noticed that one of them had swelling around the eyes, and had them closed
all the time. There was no getting away from it, it was time to head to the
vet. Fortunately there’s a vet’s surgery in Portlethen, so it was on the
phone to get an appointment. Despite phoning at 4pm or so, they had a free
appointment at 420pm that afternoon. So it was a bit of a rush to get a box
for the poorly little guy and to get out. As Matthew was dressed, Jane
asked him if he’d like to come with me. He was given a big job – to look
after the turtle in the box and make sure he was safe.
Now, Matthew loves to help us around the house. He takes the responsibility
of getting a job very seriously (when he gets his head round the need to do
the job in the first place!) and was holding the box very tightly indeed
when we went over to the car. In went the turtle, then Matthew sorted
himself out, then took possession of the box again. There was a little
squeal from Matthew just after we set off. The adventurous little green
thing had escaped from the box! But Matthew managed capture him again, and
we were off. Matthew gave me a running commentary of the turtle’s antics,
and that he was keeping a hand on his shell to stop him from escaping.
I was slightly reluctant to take Matthew along initially. What if the worst
had come to the worst, and the turtle was really ill and there was nothing
they could do? How would Matthew react if the little guy had to be put
down? Ultimately we decided to take that risk, as after all, dying is just
part of life. Fortunately it didn’t come to that, and Matthew was
fascinated by the consultation with the vet. She wiped his eyes with a
cotton bud and was finding it difficult to get his 3rd eyelids to open,
although he occasionally did open them voluntarily. The conclusion was
that he was suffering from a vitamin A deficiency. He was given an
anti-biotic ointment for putting on/in the eyes, and the vet has ordered a
vitamin A supplement, which will need to be injected. I’m hoping that needs
to be done at the surgery!
What has really involved Matthew though is that there are a lot of things
we can feed them, other than their usual diet of dried shrimps. It was
surprising to hear that it would be a good idea to feed them boiled eggs
and cheese – to get calcium into them. Matthew couldn’t wait for me to get
a pan of water on so we could hard boil an egg! Its another responsibility
he’ll take very seriously. In the meantime, we’ll keep applying the
ointment, and will wait for the surgery to get in touch about the jabs.
Taking Matthew to the vet’s with his turtle was a risk, but one worth
taking. He’s seen his pet being treated, and helped. It has also meant that
he can be involved in helping get the little green one better. If anything
can help teach him a bit of responsibility, then its got to be worth it.
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.