For the last few months, I have been struggling, really working to figure out how to help Little Man Tom and the rest of us with his fearful temper and quite ghastly behaviour. This little boy is one whose personality has always been marked by charm, charisma and smiles, and to see him so deeply unhappy has been very hard.
He has many reasons for being sad. He is becoming increasingly aware of how different he is to other nine year old boys. They are much, much bigger than him, faster than him, stronger than him. They have no interest in him because he looks like a five year old. Nine year olds in general (including girls) are far ahead of him academically, so any activity which requires reading is one which excludes Tom – computer games, ds games, reading, puzzles etc etc etc… The girls have become very keen on “girly” games which do not interest Tom, nor are they interested in a little boy for their games any more. When they were all a little younger, Little Man was a very useful “baby” in their play… no more. So he is alone and isolated even when surrounded by children. Which wouldn’t be so bad if he was not as sociable as he is. He LOVES being around people, chatting, laughing, playing. This isolation is a punishing experience for him.
He is tired. Almost constantly tired, and tired of being tired. He’s fed up of having to slow down just when he’s beginning to have fun.
Having two older siblings on the autistic spectrum is not helping. His role models in the family have enormous impulse control problems, and when they lose their temper they lose ALL self control. Little Man has no other children from whom to learn how to manage frustration and disappointment (remember, the utter lack of friends?). So we have considerable “learnt behaviour” problems.
His body doesn’t do what he wants it to. He’s nine years old and that is beginning to mean something…
So… I understand that there are many many reasons for my Little Man to be sad and mad.
In the same last few months, we have had to face head on the fact that Little Man has some learning difficulties, and some considerable problems with memory. What those difficulties and problems are remains completely unknown and misunderstood… whether we will ever have answers is another unknown. He is bright. His thinking is often clear and surprisingly insightful. He remembers clear details about things he learnt a month ago, but cannot remember something from yesterday. And he finds conversation difficult sometimes – understanding what others are saying, remembering what was said only seconds ago – all of this is challenging, never more so than when he is tired. (Oh, remember up there I mentioned he was always tired? Problem.)
For months, then, we have endured several daily tantrums, tears (great big fat oily sobbing tears), shouting, pre-adolescent rudeness, sarcasm and name calling. Throwing things, punching things (and sometimes people), screaming insults, slamming doors… every. single. day.
For those of you who do not know me, a little brief recap: I have three children, aged 12, 10 and 9. All three of them have considerable disabilities. The older two have Asperger’s syndrome, a form of autism. Their behaviour has ALWAYS been extremely challenging. So in the course of the last ten or eleven years, I’ve developed something of an arsenal when it comes to parenting tricks. Chances are that if you can think of something to suggest to me, I’ll have tried it. This isn’t arrogance, it’s perseverance and invention in the face of utter desperation. I’ll have to do a blog post one of these days on “what to do when everything in the parenting books has failed (and you’ve really tried, tried, and tried again with each technique). For the sake of this post, let’s assume that I’m a fairly good mum and I’ve tried the reward charts, the time outs, the patience, the small chunks of time methods, etc etc etc…
Today was much the same. Little Man Tom got up, looking pretty awful and very yellow (a sure sign that he’s not very well), with ear ache due to yet another infection, and within hours was just horrid. By lunchtime I was at the end of my tether. All that self praise in the previous paragraph? Forget it. Rubbish mum. No patience, fed up, yelling, walking away to try and calm down, but clearly not doing anything useful.
So it’s pretty lucky that I have Darling man!! Who, in the face of my inability to cope anymore, rose to the challenge admirably.
In a flash of, well, genius!, he decided to get some feed from the fridge and give Tom a tube feed. Which is the first time since March that Tom has had a feed at lunch. He’s been eating orally really well in the last few weeks, but losing weight. Because of the summer holidays, our appointments at the feeding clinic have been more spaced out, and we are due to go there this coming Tuesday. I’d already ear marked this appointment to address what we’re doing because Little Man just isn’t well. But, well, the idea of changing the plan and taking control of his food again hadn’t occurred to me.
So. Genius Darling Man!
Tom had a feed and some lunch orally. Within half an hour, he was pink!! Little Man hasn’t been pink in months!!! A little while longer, he was happy!!! He had his normal feed in the afternoon, and ate a huge roast dinner (well, huge for him!! – two yorkshire puddings and four roast potatoes!!!). By 6pm, he was Tom. Oh my how I love that kid!! Quite mad, quoting chunks of the paralympics combined with the Lion King and Harry potter and just lots of fun. At 6:30, he crashed and we had cross, frustrated and all sad again…
This weeks’ a bit busy for Tom: paediatrician appointment Monday, feeding clinic Tuesday (oh, and two meetings at school). I’m really hoping we can take this little evidence and do something to help him. Because I do love seeing my Little Man Tom. Little Monster Tom makes me sad…