Skittle inspired future worries

Jude is 10, he isn’t a big 10 but boys of that age are strong and with his disability I don’t think he knows his own strength. When Jude has a tantrum, I can just about hold him if I need to but there is soon to be very little I can do to stop him in any physical way. Yesterday, after school he had the mother of all tantrums because I wouldn’t let him eat an entire family sized packet of sweets. Friday is called Sweetie Day in Jude’s little chronological weekly order and as a treat, his long standing bus driver buys them some sweets on the way home. It’s a really lovely touch and one I appreciate; he adores his bus journey to school and back and is a real integral part of his daily life.

It’s so weird because as quick as he goes into a tantrum, he comes out of it. He walked into the dining room having screamed for about 25 minutes, sat down next to his baby sister and started eating dinner as if nothing had happened. After a minute or so, he looked up at her and said really quietly and sweetly, “careful Emmeline, you dropped some food” and picked up the few bits of carrot she had pushed onto the table.

Is this the same boy who was just horizontally yelling and kicking in the hallway?!

It’s just all so bizarre. How am I supposed to respond to this?

From this type of behaviour, I always have a mental worry about the future. What will he be like in a few years when he’s as tall as me and potentially still having tantrums. I know he may be out of them by then but in reality, I don’t think I can care for him as much as he is going to need. I have asked his father if he will help more and he says no. Thanks, cheers. So I’m going to contact my Social Worker again (oh joy) to find out what happens as he gets older; in particular, what happens when he turns 16 and no longer in school? This has always been my fear as very often once they’re out of school, there is this massive void of stimulus that used to occupy and expand his mind in the form of daily school. I know it isn’t quite so bad these days and there are lots of day centres, clubs and the like, such as Earthworks in St. Albans (http://www.earthworksstalbans.co.uk) and if he goes to the secondary school that I want him to then their outdoorsy approach to learning will be a great precursor for working at Earthworks. There are also jobs out there for disabled people but will they be suitable for Jude? Who knows.

Where will he live? This is another massive concern of mine and something my parents and I talk about regularly. My dad keeps talking about putting a trust fund together for Jude so he inherits meaningful support rather than just a lump of money who we have to entrust someone else to spend for him. Or at least help him spend. I’d rather he was left a trust that pays for housing but which also offers him occupation. So for example, dad was considering buying a small piece of land so he has work when he’s older and something that’s his own and no one can take away once we are no longer around. I don’t want his sisters to have to worry about him all the time so it’s really down to me to sort all this earlier rather than later.

All this from a tantrum about sweets….

He’s just up out of bed and the first thing he’s said is “mummy, I need my sweeties.” ARRGGHHHHHH

 

 

 

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