An Up and Down ASD Year

Inevitably, we use the last day of the year to reflect on the year that’s gone by. Its been no longer than any that’s gone before – shorter than 2012 by a full day! Our 2 ASD boys might not understand how some days/weeks/months/years can seem longer than others. Most of us know what we mean when we say, “Its been a long year” but Matthew and Daniel – like other ASD kids – see things literally and logically. To me, 2013 has gone by fairly quickly. Its helped that we’ve had a couple of short breaks at Easter & in October to sandwich our summer holiday.

The holidays have broken down the year into manageable chunks for the boys and gave them something to focus on. Without that, it may well have been a long year. Its part of the challenge with ASD children – getting something for them to focus on. Its an attempt to give some sort of routine to the year. The danger in that is that when we go to Haven at Haggerston Castle for our short break, and Haven Primrose Valley for our main break, that is routine, and its what the boys will expect to do every year. Making a change to that will end up being a disappointment. We’ll cross that bridge when we come to it, but for this year, it was perfect. The boys both enjoyed their times away, and Haven is perfect for them. The parks have plenty to hold their attention on site, and Scarborough has plenty to offer offsite too. The boys had the added attraction for their auntie & cousins visit for the weekend at Primrose Valley, and they had a great time with them.

The school calendar year has been a bit of a mixed bag. Both boys are achieving well at last. There’s never been a problem with Daniel in that regard – he is very studious and loves his time learning. We had no problem with him at all in school. He can get annoyed with other kids in class who talk or interrupt when he is concentrating on a task. He liked his P1 teacher a lot, but loves his P2 teacher. She likes Doctor Who & Star Wars, so is COOL! Matthew on the other hand has really had a mixed year. At the start of the year, he wasn’t getting much SEN support, and it was showing. He started to struggle a bit with his reading, and wasn’t enjoying school. It didn’t help that he was being bullied by a boy in class – that wasn’t being dealt with. Ultimately Matthew took matters into hands and belted him. Naturally, it was Matthew that was punished – punishment that turned out to be a blessing in disguise. He was moved out of that class – away from a teacher I felt wasn’t good for him to a teacher that understood him, and nurtured him. Sadly, she left to a promoted post at Easter, but his new teacher is still with him in P4, giving him continuity at last. He’s also getting a lot more SEN support. He adores his SEN teacher, and can’t wait for sessions with her. He also has time with another SEN teacher in the school’s special needs hub. Both are excellent teachers, and I have a lot of time for them. The SN hub teacher was one of his job share P1 teachers, so he knows her well, and is comfortable with her.

Away from school, the boys are becoming a bit more volatile, Daniel in particular. He will often head off into a world of his own. He also is susceptible to increasingly frequent meltdowns. He is easily frustrated as he is a little perfectionist and if it doesn’t happen for him immediately, you can seen the steam coming from his ears. Its not all meltdowns with him – which are largely focussed on the home – he is adept at trying a tantrum to get his own way. What we’ve had to learn this year with him is how to discern what’s a tantrum and what’s meltdown. When he tantrums, we need to lay down what is acceptable behaviour. Its unfair to punish him if he’s in meltdown (its usually a trip to the “naughty step”) but equally, its not right to excuse what is bad behaviour and blame it on his Asperger’s. He’s sleeping a lot better, which is something. Matthew is too, but we still get regular nights when he is through in the early hours, disrupting the house when we try to get him back to bed.

Daniel has developed other little difficulties. At a review meeting with the school, we’d mentioned his double jointed fingers – he has difficulty holding a pencil, and also finds it difficult to raise his arms. The Educational Psychologist proposed referring him to Occupational Therapy. We also asked to see the school doctor, and he was due at update visit with them. The school doctor was concerned with his joints in general, and saw enough to refer Daniel to orthopaedics at the children’s Hospital in Aberdeen. The end result is Daniel has been diagnosed with hypermobility – if you watch Daniel running, you can see his knees point out the way instead of straight ahead. The end result now is he’s awaiting an operation to put pins in his knees to straighten his joints. We’re ending the year waiting for the op. In the meantime, he’s on the waiting list for OT. We’ve got him chunky pencils, and grips for regular pencils to help with his holding of a pencil. Its working so far, and his writing is improving. Other than that, their health his year has been pretty good. Missed days to illness have been very, very rare in the latter part of the year. Given Daniel was troubled with a lot of chest infections, that improvement has been most welcome.

Although Matthew still has great trouble understanding and initiating friendships, Daniel is blossoming in that regard. He’s still not bothered if he doesn’t see his friends for a few days – or more – but he is enjoying playing with them outside of school much more. He’s been to a couple of friends houses to play, and is comfortable in doing so. Its a big step forward. On a slightly downside, although they are maintaining their relationships with their grannies, neither (the grannies) seem overly troubled in engaging them. Jane’s mum is happy being miserable, and Daniel is often the target for her frustration. Daniel is maturing and can entertain himself and has new interest and that has made Jane’s mum jealous. Woe betide he watch Star Wars. My mum very rarely comes over, using the boys being at school as an excuse. I’ve ended up taking them over on the odd Sunday, but when we get a visit, there’s usually a spurious reason as to why she can’t stay (cleaning for non-existent visitors, or the church is more important.) The boys are still craving their attention this year, but as they grow older, they’ll see through it, and will drift away from their grannies. It will be their loss, not the boys’

Overall, its been a good year with them. We’re continuing to learn how to cope with their ASD – and how to help them cope with it. We’re continuing to learn how to best advocate for them at school. They’ve loved some of their activities this year, particularly their special needs dancing at the Deeside Dance Centre, which was arranged through local special needs charity, Scills. That’s been a big positive for them. They’ve met other special needs children, and realise that they’re not alone in having a special need. The girls in their dance class are Downs, but that makes no odds to them. They are so accepting of differences, and many adults could learn from that. Its been a decent year, and the boys have both grown in the physical, mental and spiritual sense. Well 2014, we’re ready for you. Bring it on!

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