By day: mum of an autistic tot. By night: mum of an autistic tot.
Tuesday saw the Pwdin go start back at school. This year he will attend full time and I’ve got to be honest I am so grateful. Last year, as a nursery pupil he was in for two days one week and three the next. On his days off, it was clear to see, just how much he missed the stimulation and structure of the classroom. This brings me on to the Summer holidays. I thought they’d never end!
Don’t get me wrong. I love being with my boy. I adore him. He, on the other hand, missed school desperately. He couldn’t understand where it had gone in his life and it’s not overstating it to say that he mourned its loss. He would wake up and desperately try to get out of the front door which, inevitably led to melt downs and self injury. There were times he would bang the door with his head, fling his whole body at it or take a run up only to throw himself down hard on his knees.
Trying to distract the Pwd when he is in that frame of mind is near impossible. There are windows of opportunity, like when he is trying to catch his breath, but you’ve got to be quick. Hubby was at home for most of the break and we established a routine that suited the Pwd: an early morning buggy (stroller) ride to check on the local ducks, a run around the garden and then a trip out to get some coffee and maybe some groceries too. When Daddy had to go back to work though, I really struggled to cope. We only take Pwd out in public on a two to one basis and this further change to the boy’s routine caused only further upset and frustration.
It would help punctuate the day if the Pwd were inclined to eat but the holidays have seen him all but give up on toast and he is going through a phase of chewing up then spitting out bread. He is eating frighteningly little and what he does put in his mouth ends up on the floor by choice or because he tries to swallow it whole, chokes and heaves it up.
Other troubling behaviour intensified over the Summer. Poo painting became, once again, a regular occurrence and biting became an expression of anger, affection, appreciation, frustration, boredom, need, rejection…it was constant. He would go on manic rampages. On one occasion, he even chased me into the kitchen and I was safe with the baby gate between us. Here’s how that went…
We were fortunate that the Pwd was offered five days on a Summer school for autistic children run by the charity Barnardo’s. When people are quick to judge parents of disabled school aged children for not going out to work, it almost always escapes their attention that there are desperately few after school clubs that can safely accommodate our children, and fewer holiday clubs. Indeed, there will be fewer still if our local council gets their way (more on that another time).
The three hour respite sessions from Pwd’s lovely ladies were never needed more. Now, I know I’ve ranted about this before but the work that these ladies do is so undervalued by just about everyone but us parents and our children. We had been offered an extra three hours of respite but it was deemed that the Pwd needed more “specialist”, more “expert” input than his ladies with more than half a century of experience of looking after children like mine between them, could possibly offer. Never mind that we wanted the Pwd to be looked after by the ladies we know, love and trust. It had to be a different organisation. New people who, upon meeting them and spending nearly two hours discussing our son’s likes, dislikes, capabilities and deficits, we believed were up to the job. We were wrong. The consistency of care we were promised was not delivered even in the second session in which his carers had planned to take him to a venue so far distant from the types of venue we had agreed would be suitable we immediately ended our relationship with that organisation. It beggars belief that we parents of disabled children are encouraged, no, expected,to hand our children over to strangers week after week and be grateful. What does this teach our vulnerable children? Going off with strangers is ok because mammy let’s me go with whoever comes to the door, lets me get in their car and be driven away? As you can probably tell, the whole episode still grates.
But now, the Pwd is back at his wonderful and incredibly special school. His excitement when he saw his school shirt that first morning was unbounded. He knew what it meant. Though he has been back less than a week, the biting has all but stopped. He still isn’t eating but he has his paediasure so isn’t malnourished by any stretch of the imagination and is going to sleep at a more reasonable hour. All in all, he is a far more relaxed child. Hubby got a promotion at the end of the last academic year and is finding his feet in his new role. Me, I’m winding up one big project and am about to start some new and very exciting ones soon. I’ll keep you all posted.