Guilt over finding everything with DS such hard work

[JESSnutsRoastinOnAnOpenFire]

For years I have always made sure that DS participates in everything possible.. and that we will all do stuff as a family with DS along with us! But he is such hard work now (he is 5/has some kind of cp/developmental delay etc etc). I never relax (especially since he had 2 fits in the summer) but the closest I come is when he is at school/asleep at night. (And less so at night really because I am constantly watching him on the TV monitor to make sure he is ok/not fitting or breathing too fast as he has had a constant cough and/or chest infection for weeks now.)

This is wrong isn't it. I ought to be able to 'enjoy' him more. He is lovely and I love him to bits.. when I am playing with him on the floor I can't stop grabbing him and smothering him in kisses (he would never allow this if he was NT I'm sure!) But being out with him is a nightmare... and being in with him is often worse (made worse by a house that is so unsuitable for his needs.) I planned to take DD to a Christmas church service for kids this morning. I hadn't planned to take DS as although they love him church, these days he is so hard to control that I just feel like a freak show and I hate all the sympathetic glances and comments.. and have to mask it all in a smile.. so they then think I'm 'brave' and 'cheerful' and tell me so! It's easier to go without him... and these days I find I have to chose the easy option sometimes. But DH was desperate to watch Liverpool playing and all DS kept doing was throwing the remote control and other missiles at his head. (He is a surprisingly good shot considering his coordination is poor.) So I took him to church.. and he was horribly high maintenance. I spent the whole time wishing he was at home so I could have enjoyed the service with DD (who got ignored in my mission to prevent DS from wrecking the joint.)

He is getting worse. He seems to be getting more and more out of control which I think is frustration. But nobody can cope with him.. although some do try!

I live in fear of him falling ill or losing him.. but fear for a future when he becomes harder and harder to handle as this is what seems to be happening. I no longer 'grieve' for the child he might have been so wish I could enjoy him.. but although he makes my heart burst with love for him, coping with him is getting harder and harder.

Just venting really.

My stepson has CP. Quite severe, in a wheelchair, v limited use of his upper body, v poor speech.

He has been in ms schooling for proimary, though a year or two behind, but for secondary he wil go to a special school.

It has taken a lot for him to accept this, in the past he has wanted to go to secondary ms, but he has agreed to try special now.

I have limited contact with him, he visites every other weekend, but he has gotten easier as he has grown up in many ways. Age 5, when I met him, he wanted to do all that the other kids did. Then he got quite violent and aggressive, especially to hi sister. Now he is much calmer, and accepts his limitations more.

For DH it was the fear that ss wouldn't have a social life in a special school, that there would be too mmay differing needs of other pupils. But having spoken to various professionals, all of whom work with ss, he has agreed that he will have many more opportunities at his new school.

And when people tell you how brave and cheerful you are, it is a compliment, yuo will be greatly admired by any parent simply for taking care of your child, sn or not.

Thank you. When we have this appointment I am going to ask about the extent of inclusion that is happening. It isn't a 'bad' as you have described it was for your DS JimJams, I know he goes into assembly.. they make a big deal of telling me about when he is good.. but I don't get to know about how often he gets taken out. He has participated in both school nativity plays (both times as an angel!! Ha! Think they're having a laugh!) but his poor one-to-one was there on the stage with him like a sore thumb, 'wrestling' him into a standing position and trying to stop him hurling his plimpsolls into the audience! It was funny and we chuckled.. but of course there is a part of me that wishes, despite his SN, that he would calmly stand there and co-operate.. of course there is.

Last year, at the crib service on Christmas eve at our church, they chose him to be Joseph (it's just a tableau, constructed on the spot, with quickly donned costumes). He co-operated for this this (albeit with me stood behind his wheelchair at the front of the church trying to be invisible) although snatched Jesus clean out of Mary's hands at one point! But this year I just KNOW he would not sit still for what long! he can climb out of his five point harness and lap strap on wheelchair.. wheelchair service say it is impossible.. but it bloody well isn't! So I KNOW his behaviour is getting worse. If a change of school could help this then I will be seriously mulling this over. Defininitely want to discuss special school input at least.

I will leave you.. as they say.. with a vision of Alex being very unangelic in school play last week...!! And other one him just being gorgeous!

Hurray Angel!

Spikey Alex

Lovely photos! He's very cute

A friend has just moved her dd from an MLD school to ds1's. (her dd goes to the unit attached to ms, but part of ds1's school). She said the thing she likes most about the change is that her dd fits now- she doesn't stand out. DS1 stood out at ms and I hated that, now he's a full part of the community. I didn't realise until he moved just how bad it had been tbh.

Gorgeous pics!
I think you should start to consider special school and, again, don't rush and maybe don't even tell anyone yet. Can you find anything out from other local parents? A mixture of m/s and special sounds like it would be good for him. If you can do some groundwork discreetly that would be great. It would be very interesting to know what really goes on at his current school. Is there any way you can find out more? Would his 1:1 tell you? Maybe there's nothing to tell?

JESS lovely pics, my ds(5) had to be wrestled on and off the stage for the xmas play and then dissappeared out the door for the rest of the show . I hardly had time to feel proud before it was over. And all the other children seemed so intelligent, it made me notice the gap that is developing now. It is incredibly hard to decide wether to stay ms or sn school. My feeling is unless ds shows little talent for academic learning i will leave him ms as long as he's able to cope. As i don't want to limit his capability to function in the real world as he's too young to judge yet. He could barely talk 2yrs ago but now is really good but i would never of thought him capable back then.

Obviously will always depend on the child, their condition and the individual schools, but ds1's special school has increased his ability to cope in the real world massively. His mainstream school spent the whole time trying to contain him, and getting nowhere. At special school he's been able to learn.