Support Group

[Di]

I feel I should not be feeling like this! I mean, I’m not going through it like Tom is. Am I! I’m just his mum and carer; I don’t have a clue what it’s really like for him, emotionally. It’s breaking my heart; I’m finding it very hard to keep my emotions hidden. I also can’t sleep or eat.

Toms not doing to good, he’s rather depressed. He’s given up esp., at school. Is there any wonder!! They said to him you should not give up on your self, you wasting your education and you bright. You’re going to have a fantastic job and future!!!

Hello!! What ****ing planet they on!! They know full well, Tom will not be around to have a career. I know it’s harsh, but what’s the point in pretending! Otherwise. Just like what they are doing at school.

This afternoon, found out if all goes to plan, e.g. there is a place, and funding, Tom will be moving to special school as early as next term. See mainstream school think cause, they have all the equipment support staff .They can take disabled young people, they are so wrong! They also need to cater for there other needs. Social, emotional, counselling sessions etc. Which he will get at Oaks Park.

We hope he will get a place in special school; I just hate to think how he will come emotional if he does not get a place.

As if Toms not got enough worries, he’s having major issue’s coming to terms with his DMD getting worse. Plus him having to watch his only other friend struggle, sadly to say as he’s nearing the end. Tom said he knows Paul will not even make it to college in September (there were 5 of them) who’s got the same as him.

Its awful watching Tom get worse, he’s not able to even lift his arm onto his controller so he can drive his chair, but he still tries. Even though it’s hard for him to do now. He can’t do anything at all on his own now, without someone putting his arms where need be or putting stuff in his hand.

[Jess]

Di, first of all, big hugs to you and Tom. I don't have a life-limiting disability, but I get depressed about my problems, and I know it breaks my Mum's heart to see me like that. But, sometimes, there's nothing she can do for me and I just have to come to terms with whatever's troubling me in my own way. You said it - you're his Mum. He's your son. Just because you're not going through his problems, it doesn't mean that you don't have the right to feel bad about it. You probably just wanna take it all away, I know my Mum does, and it's so hard because you can't. You both have to come to terms with it, and just like Tom has the right to feel sad, so do you.

School is a difficult one. I can see why you would find their way of handling things weird, but I guess it would be equally weird if they didn't try with him at all because they didn't think he'd got any potential. At the end of the day, whatever they say, mainstream state schools aren't equipped to deal with this kinda thing.

Maybe when he gets this place at the special school, the staff will be able to help him to come to terms with his DMD. 'Cos no-one really understands in mainstream, so it's pretty impossble, no matter how hard they try, for them to help. Maybe his school was good for him in the past, but now it's time for a change.

I guess I'm kinda rambling now...I don't really know what the point is that I'm trying to make here - just that I'm thinking of and praying for you and I totally empathise with you both. Tom sounds like a remarkable young man...a credit to you.

[Ashirr-Leigh]

Di, you're perfectly entitled to feel the way you're feeling. Obviously Tom's DMD is hard for him but it's rough on you too. It can't be easy and I'm sure no one judges you for feeling the way you do.

I think it's great that Tom's getting a place in a special school and they should know more what they're doing.

I'm so so sorry that Tom's condition is getting worse but Jess is right, he's an absolute credit to you.

Just remember you can always talk to us on here.

[Di]

Thank you, Jess! and Ash! for the advice and support.

Wow Jess you hit the nail on the head,

Maybe when he gets this place at the special school, the staff will be able to help him to come to terms with his DMD. 'Cos no-one really understands in mainstream, so it's pretty impossble, no matter how hard they try, for them to help. Maybe his school was good for him in the past, but now it's time for a change.

[/qoute]

Thanks Jess, you not rambling at all. Yes your so right. I do want to take all the pain away!

Erm... hmm... I want to give Tom as much happness,fun as i poss can, as we both know and live life knowing he's not going to be around for ever. Not sure if I said before, the av age is 16 to 19 for DMD lads. Very rare it longer!!!

Tom told me today he only plans his life a couple of weeks in front, bless him. He has had to sit and watch over the last three yrs , see two of his best friends get worse and die, Now watch Paul his other best mate fade away. I cannot imagine what goes through Toms mind, I just want to take the pain away.

It's so upsetting for me, to see this too.

He's even got his funeral sorted out, which I kinda made him do I know its not a nice thing to talk abt. He was very light hearted abt it, he said he'd need two coffins one for all the stuff he wants to take!! also he said in a very serious voice, don't dress me in my PJS, or I'll come back and haunt you!! The next day when we got up he said he's glad I did make him do it.

I went to see our GP recently, and had a chat abt Tom not been so good, I said he's finding it hard to cope and come to terms with his condition worsening. I was shocked at her responce, she said he will be ok,he's had yrs to come to terms with his illness. And!!? whats that got to do with anything?

If I had to do it all over again!, I would not change a thing about Tom's education All Saints was/is the best place for him education wise. Sadly it's def time to move on. As the layout is another problem. As he's now in an adult electric chair, as he's so tall.

The school is so small. He's actually a fire risk in some of the classrooms. As he has to sit near the door and has to move for people to get in and out. One of the lifts is very small.etc...

One thing I'd have def done is had,Tom moved before he had his back surgery last year.

Thats when things started to go down hill, was when he went back to school after his surgery. They knew he would be so more dependend! on them, they did not do things quick enough.

Oaks Park sch has had so many, young persons with DMD through there doors over the years. Tom knows most of the young persons ,esp the DMD lads . Who now have sadly past away as most of the DMD lads also went to chancet the respite centre he goes too. He also knows the school very well, as he goes there to the dentist, and over the years to other clinics.

There is a on site nurse,OT, Physio...etc.They do after school ativites most nights,so he will get home abt 6pm. They go all over on trips too. Tom esp needs to do stuff without me but he can't go anywhere without some one who know how to look after him.

So personally it's def the best place for him. The thing is the standards of education is not the same as a mainstream school, he will def! not be educateted at the levels he used too. But thats a small price to pay for Toms happyness.

Thanks again, for the help.

[~Rosey~]

I'm sorry to hear this.

Could I ask, how old is Tom?

[Di]

I'm sorry to hear this.

Could I ask, how old is Tom?

No need to be sorry hun, thanks anyway. Tom is 15, he will be 16 in September.

[Mez83]

*Hugs Di* That's about all I can do. I don't know what to say. It's a really really sucky situation though. Poor wee Tom having to watch all his friends deteriorate. He's definately one very brave dude!

[Skykat]

You have my hugs too Di. Like Mez there isn't really much I can say except that youb sound like you're making the right choices and doing your best for Tom which is all you can do. Just know that you have my support if you need it and that we're all thinking of you.

[AngelRose]

Di,

As you may or may not know I use an electric wheelchair for Cerbral Palsy & I use to go to a school likes Oaks Park. They can help Tom in so many ways now; show him how to do what he can for as poss; show you to do that to.

The next second, the next minute is the future. We all have a future if we have one more second; if you cope day by day or second by second, together that's ok. Good times and bad times are equally valid.

Tom sounds like a bright young man with a bright and loving Mum. *HUGS* to you both

[Jess]

Yeah, Di, I just wanna back up what AngelRose said. I used to go to a special school, and, okay, the academic education might not have been perfect, but I can honestly say that it was right for me at that time. Like what AR said, they'll be able to show Tom what he can do, and help you, too. My heart goes out to you, and I hope it all gets slightly better for you very soon. If anyone deserves it, you do!

AR: I have CP, too - I don't use an electric wheelchair, but....yeah.

*hugs to all three of you*