I am done in. Physically and mentally.
I always get nervous on the run upto the summer holidays. Reilly likes his routine and the holidays play absolute havoc with him as it does most kids. My plan was to keep him busy. Out and about, tire him out doing things he loves, less time in the house the better – this works really well when Reilly wants to be out but when he refuses to get out his pj’s it’s a new ball game.
Reillys is very controlling over me. I cannot eat anything in front of him, if he hears me scraping plates he assumes I’ve eaten and tries to smash them. There have been numerous plates and cups in my garden the last few weeks. I cannot drink – tea, pop, juice, milk doesn’t matter if I’m caught, this is no exaggeration there is at least an hours meltdown. He gets that upset he shakes, cries and hurts himself. I can’t do that to him so I go without.
I can’t go to the toilet, if I stand up to leave a room he will run ahead of me and stand at the toilet whether he needs the toilet or not to show he goes first. If he catches me middle of the night he wedges himself in there until he calms down usually around 30 minutes, I can protect him from most things but this one is impossible.
If I touch him, I love him sitting with me, if I stroke his arm he will scream and hit himself then place my hand back where it was as if to say I say it’s ok so now you can.
I can’t cough or sneeze this provokes an extreme reaction from Reilly and I spend most of my times praying I don’t do either.
i can’t answer the phone. Doesn’t sound like a biggy, trust me it is. I’ve had more broken phones from answering calls I now just done bother. Few understand when I say I will TRY and ring you back.
If I try and use my computer he unplugs it, iPad he throws it, phone tends to head down the toilet. Hence my quietness of late.
If I try to talk to someone he’ll do his best to disrupt it and will happily sit with his hand over my mouth for any amount of time.
When Reilly is at school or out and about these things are slightly less of an issue. Currently my term time I eat tea before he comes home and have breakfast when he’s gone to school. When we are velcroed 24/7 it all becomes a bit overwhelming. Add to that an 11 year old who thinks he’s 17 moaning and groaning about FIFA points and first world problems and a 21 year old moving to York for Uni I’m a little stressed.
I feel broken hearted for him that such ordinary, everyday things give him so much terror and he can’t tell me why and I feel guilty that I come so close to losing my mind.
I think controlling is his way of managing his own anxiety, being an anxious girl myself I get it. As long as I sit on the sofa, and don’t eat, drink, fart, go for a wee, cough, sneeze or communicate we are just dandy. Where he wants me no surprises just me and he.
This blog hasn’t been written to moan about my boy, it’s been written because sadly some folks just don’t get it. I would welcome any advice from actually autistic people or parents who have similar issues. I don’t know how to help my boy or myself.
See you in 3 weeks 😬
I have a 14 year old daughter with special needs, (CTNNB1 Mutation, very rare). Some of the things you describe are so very familiar, although I admit that she is much better now.
I’m afraid I don’t have words of advice, but I just wanted to say to you – I hear you! Loud and clear! And I’m sending you lots of warms hugs.
Thank you Sharona and you too. I’m desperate to help him x
I have a 14 year old daughter with Special needs (CTNNB1 Mutation, very rare). I can totally relate to some of what you have described, although I must admit that she is much beemyter now. Still challenging, but better, or at least some elements are better.
I’m afraid I do not have words of advice for you, I can’t even promise you that it will get easier, because I honestly don’t think it does, but I just wanted to tell you – I hear you! Loud and clear! And I’m sending you lots and lots of warm hugs.
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