Asperger's update

I have been so proud of Barney lately. Last week he celebrated his 7th birthday The changes he has made in the last year have been phenomenal. It was just a year ago that he was practically housebound through fear and anxiety. A lot of this was due to sensory issues that we weren't aware of at the time. He has spent 9 months now taking a medication that the consultant said he would only give him for 3 months. In this time he has had a lot of therapy in the form of schedules, timers, breathing exercises, visualizations etc, from the Autism team. And he has also been attending weekly Occupational Therapy sessions. (see the photo below)

Well, this week has had his review appointment with the consultant; the same person who diagnosed him. He said that he could see a remarkable change just by talking to Barney. He really has been like a different boy, and it has been wonderful to watch him enjoying his childhood, instead of being crippled by fears and worries.

But because he is doing so well Dr M decided that it is time to take him off of his medication. Barney immediately panicked and curled up in a ball on his chair begging the doctor not to stop the medicine. I expressed my concerns that I was worried he may psychologically feel that he can't cope, and perhaps a placebo might be a good idea. He decided to wean him off the meds over 3 weeks. So he is now taking them every other day. The idea is that on the days he is not having medicine he will see that he is coping and gain confidence that he can cope without.

He is on day 4 of this alternating meds schedule and the changes are already causing concern. Thankfully, the anxiety hasn't returned yet, and for this I am truly grateful. But he is once again, very suddenly, a typical 'Aspie'. I hadn't realised that the medication had not only reduced his anxiety, but totally altered his personality. Whilt I love the aspie aspects of this personality, I am also very aware that they make daily life more of a challenge for him; both at home and at school. The staff at school have already called me in to discuss the difference. Then yesterday he went to what was supposed to be his last OT visit. But after seeing the change in him she decided she couldn't end his therapy yet. He was, to quote her words "a different child". He wouldn't listen, wouldn't take instruction, cried and sulked when he couldn't do something, answered me back rudely, had huffs and tantrums, dangerously hit at the equipment and wouldn't co-operate. He was also totally hyper, seeking movement and deep pressure stimulation and generally manic. The OT stood with her mouth open for most of the session and said she had not expected such a dramatic change. I felt like crying when I came out. What happened to the polite, well behaved child that I had been taking to OT for months?

Anyway, things could be a hell of a lot worse, and if they continue like this then we will all cope just fine. But I have a deep fear that things will go right back to the way they were, and I really don't want that for him, or for the rest of the family. Fingers crossed.

Occupational Therapy is Fun!

It's been so long since I've updated on all the general goings on. Today I'm playing a mini catch up, although I've missed absolutely heaps. I'm in bed with a miserable cold today, so blogging for a bit to pass time.

Barney has started seeing an Occupational Therapist at Lurgan Hospital. She specialises in helping children on the autistic spectrum. So far he has been to two appointments and absolutely loved every single minute. It's just so much fun. At the first appointment he had to complete a sort of written test. He sat at a desk and copied shapes and drawings with a pencil. Then he drew a picture of his Dad. The OT noticed that he really pushes the pencil heavily into the paper, a common problem with children on the spectrum who may press either too lightly or too heavily. From watching him she was able to notice that he needs deep pressure but can not bare light pressure. That makes perfect sense now I think about it. He likes deep squeezes and cuddles and is very heavy handed, often hurting himself or others without meaning to. He is quite clumsy. But he hates it when people brush past him, or touch him lightly.

So she has been doing some deep pressure therapy with him. The idea is that children who need deep pressure get anxious and need the pressure to let off steam. I'm not sure I'm exactly describing it correctly! But she said that if he gets anxious at school, coping with the noises and hustle n bustle, that a session of deep pressure therapy will get the stress out and leave him feeling more able to cope. So she has been teaching us ways to do this. And Barney loves these ways! They involve rolling around on peanut shaped balls, putting heavy pressure on his arms; wheelbarrow walking; walking with his arms in a big hammock; hanging upside down from rubber rings; and skateboarding on his belly with his arms.

As you can imagine, there is not much that little boys like more than this sort of thing! He also crawls around on his belly, comando style, until huge weighted blankets, feeling for beanie babies in the dark. The OT makes everything fun. In the first photo he is in a hammock collect magnetic fish with a stick and putting them into a puzzle. So he is using deep pressure on his arms without realising that he is actually doing exercise or therapy.

The OT noticed that when she swung him in the hammock, without him using the deep pressure, he went absolutely hyper - giggling hysterically. She got the giggles too. He was manic. Then when she asked him to use his arms to move his body he calmed right down. She said this was a sign that movement really stimulates him. Since this was fun it made him giggle, but in another situation too much movement could cause him extreme anxiety and give him the panic attacks that he gets. I thought that was very interesting. Movement could be his body driving along in a car, people darting about near him (as in a supermarket or at school), etc. So when he gets panicked he needs deep pressure.

She taught me some deep pressure massage to use on his hands and arms. Although apparently I don't do it as well as she does - or so I'm told! She said that light touch would totally send him nuts, so it is important to use real hard, deep pressure. When she massaged his hands for the first time she said his wee finger muscles were the tensest she had ever felt in such a young child... obviously clenching his fists a lot with stress. Within seconds of her touching them they relaxed right out. It was quite amazing. She only spent about 1 - 2 minutes on each hand, but it sent Barney into a deep relaxation mode and he asked to lie down and sleep! She covered him with a weighted blanket and left him chilling out. I was quite astounded! It never seems to have such a great effect when I try it on him though!

The other thing I wanted to quickly blog about, was the recent meeting I had with Barneys teacher and SENCO. I told them how hard he finds sitting with the other children and that I feel that he is putting all his mental effort into coping with the noises and touch of other kids that he isn't reaching his potential with his work. I mentioned that Barney would like to sit on his own table, but didn't expect them to really like the idea. But they did! He now has his own special 'work station' at the side of the classroom. It is a desk with three tall sides on it, facing away from everyone else. It has his photo on it and different visual time tables. The idea is that he can sit there and not be disturbed visually by anyone else. But he is allowed to go back to his old table any time he wants to. I had thought that they might disagree with the idea as they don't want to make him different, or seperate from the other children. But I pointed out that Barney is really struggling with his friendships at the moment, and is constantly falling out with his friends. I think this is because he simply can not handle a full 6 hours with the kids. When I suggested that if he worked seperately from them, that he might then have the energy to play with the children at break time, and maintain his friendships, they all jumped at the idea. So we are giving that a try for a while. He is very pleased about it.

At break times and lunch times Barney no longer plays with the other children. His 'friends' are the dinner ladies, who all know him by name and know every detail about his life. He would much rather walk around the playground chatting to the dinner ladies than mixing with the other children. I guess that is just very typical Asperger. He has always enjoyed the company of adults far more than kids.