“It’ll get better as he gets older…” #FragileX

If I had a pound for every time I’ve heard that I’d be a rich woman. If I was to have another pound for every time I’ve said it myself, my riches would probably double.

When Sir was a baby he was golden, I hardly knew I had him, he slept through the night, took his bottle without fuss, I had no problems weaning him, he sat up when he supposed to, he walked when he was supposed to.. although he had to hold on to you finger or he wouldn’t go anywhere. There were no physical problems, I just thought it was something some kids did. Looking back now I think it was a confidence thing, he didn’t want to go on his own until he was convinced he could do it properly. But I asked the Health Visitor for advice and that opened up the proverbial can of worms that led to him being diagnosed with Fragile X.

He didn’t talk, he would take your hand and show you what he wanted. When his sister arrived he couldn’t express his feelings but his face would say it all. There were tantrums and meltdowns, but “he’ll be better when he’s talking” When he got to 7 and eventually began to talk properly, yes it did get better. Sort of. He was still a whirlwind though, but if he decided to throw a hissy fit, he was still small enough to be picked up and carted off to wherever we were going in spite of his protests. Over the past four years he has calmed down some in that respect but he is still capable of it.

The trouble is now, he’s almost as tall as me and a stocky lad. No picking him up and carting him off any more. So if he decides, like today in the supermarket, that he doesn’t want to do any more shopping, he wants to go home, he can tell me. I can say “we’ll go in a minute I just want to.. ” and he’ll have kicked his shoe off, thrown it, and plonked himself on the floor, saying “Home Now” in a very annoyed, loud tone. So I tell him, if he wants to go home he needs to stand up and put his shoe back on. He does as he’s told but still complains at me. I try to distract him by asking which till has the shortest queue.. we find it and they both help by putting the shopping onto the conveyor belt. That done they go off to play on the various kids rides that the supermarket has. Crisis averted.

He still isn’t toilet trained.. we’ll leave that at that.

He doesn’t deal well with having to go into places like theatres, school halls and so on. If we have all the family round (about 11 people) he will disappear up to his room. He still has a fascination for the washing machine, pressing buttons and watching the same bit of the same programme over and over again. Although now he does that on Youtube rather than DVD’s. His computer and his tablet were the best things we ever bought him, he knows more about both of them than I ever will.

He can’t tell me what’s wrong if he feels ill so I have to watch him to see what physical signs there are. He will take himself off to bed though, which is very sensible.

He is generally very well behaved, extremely helpful, kind hearted, thoughtful, observant..he has eyes and ears like a hawk. He knows his own mind and is able to better convey his likes and dislikes.

So has it got better as he’s got older? in some respects yes, some things have got easier as he has been able to express himself. Some things have got harder because he’s not a little kid any more, he’s pre teen with the emotional range of a 3 year old but the strength of a 5ft odd young man. The problems will never go away, they might alter, there might be new problems, he will always need help. They say you are truly free when you child can make you a cup of tea.. well he can do that! he knows how I sort my washing out and is quite capable of operating the machine.. and the tumble dryer.

There are no definite answers, all I can do is wait and see how much ‘better’ at stuff he gets and judging by the leaps he’s already made it should be very interesting 😀


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