9 Sep 2014

Limbo


Foundation year was hard work for Jimmy. The Early Years Foundation Stage framework suits 90% of children down to the ground. Freeform, learning through play, no desks, no books...it's all good. But not for Jim. Jim really struggled with the lack of structure, with the lack of routine, and with needing to share his time between activities. And because Jim struggled, the staff struggled to cope with him. It took six months for them to get the staff in place for him to attend full days. It was very difficult for me, because I was constantly told what he'd done wrong, what I should be doing with him, and felt to blame. It is difficult to accept a violent, difficult five year old's behaviour isn't solely because of the parents.

Summer holidays were also difficult for us all. The first couple of weeks were OK. We did structured learning every day at "Mummy school", which sounds massively pretentious but was just me trying to teach him to read. By giving it a name, a place and a time each day, he actually accepted it. Until the wedding. Our wedding somewhat knocked Jim off balance. He went to stay with his dad for ten days; the longest he's ever stayed with him, and he didn't settle back down afterwards. He didn't sleep, he didn't want to do anything except watch videos, he was violent to his brother, and to other visiting children. We took him out to Bewilderwood for the day (amazing place, thoroughly recommended for children) and he ran away, and threatened to cut a woman who came too close to him. He went feral at my brother's wedding, biting balloons and attacking children, until he wore out and asked to be taken home. He became increasingly 'locked in', and wild. His dad has been helping to put up a united front, regardless of whose house he's at, in terms of rules and reward. This mainly made Jim not want to be with either of us.

He went back to school last Wednesday. It's already apparent that the structure of year 1 suits him a lot better, although his actual performance is pretty low. He's going to take a few weeks to settle back into going to school, and the ringing cries of "I HATE SCHOOL" are probably something we'll be dealing with for years. I'm trying to find a decent wrist restraint I can use on him during the school run, to stop him running off. If anyone has any ideas, please let me know. To some, the idea of physically restraining a child is repellent, but I have seen Jimmy stop in the middle of the road to pick up a toy, and be deaf and blind to the car blasting it's horn inches from his back.

What has got us through the last six weeks of occasional garment-rending despair is knowing that he's on the waiting list for an autism assessment, and once he has that, he can get referrals to occupational therapy etc, as well as more input with the school. The school, for what it's worth, are being far more useful this year, and have managed to get him almost full time one-on-one supervision.
Today, I rang the hospital to ask how much longer the waiting list is. And alas, the answer is that they've lost a lot of staff recently, can't get locums to cover, and simply don't know.

I've asked to speak directly to the neurodevelopment team, just for some advice. I'm fairly sure Jimmy's sleeping problems are due to melatonin deficiency. He's been in the same routine for OVER A YEAR, with no improvement in time it takes to fall asleep (min 60 mins, max 3 hours) or how frequently he wakes up. I'm also sure his sensory overload is much worse when he's tired, which is almost invariably because of his sleeping problems. And he is so violent. He bashed his brother over the head with a wheelbarrow, and jumped knees first at his neck. He also scratched my godson to ribbons. Violence and coercion have become his favoured social tools.

It makes me wonder where I can find the cope to keep dealing with him, when it feels like everything I'm doing is wrong. Everyone has an opinion on what would work with Jim, and all I want is a professional opinion, which is the one I cannot seem to get.