coming to terms with it all

[Julieanne]

I know even after nearly 9 years i have not fully and i dont think i ever will come to terms with jays autism/communication/learning difficulties.

I have been having a bad morning and cant stop crying, im not always like this so im not sure why this day is any different to any other ??

I said to hubby, eldest will leave home, and yet youngest wont, and someone said to him that he knew a couple who have a 57 year old suatistic man living at home still with his parents that has a menatl age of 5..jay is like that he is around 3 years and the gap is widening by the month..

I dont want everyone to think im selfish but i cant do all things other people can do, like family meals out, family holidays, normal stuff and im going to be tied...i dont know if i can do this!?

i dont like idea of residential, heard too many horror stories...and family dont understand, all i get is..''its the cards you were dealt with'' im like'' ya think'' ( like i dont know that already ugh!!!

im just finding it all too much right now and even though i love my son to bits, i still have my ''days'' & i wondered if anyone else felt the same?

 

 

hugs Julieanne xx

[KateBall]

<'> >< <'> >< loads of these to you. I don't know the answer - I expect like me you are not necessarily wanting one as we know what we've got and what we have to put up with. It just helps to have somewhere like this we can go to, to be honest and where people will understand.

I had a really bad day Friday - I broke down to a friend on the phone. She was yabbering on about some other child and how lovely she was confident, bright - will go far etc etc. And all of a sudden it was too much for me - no one will ever say that about my ds - in fact I think most dislike him. Even my own mother who had shouted at him the day before she couldn't help it - he was annoying her and she is in a nursing home and not mentally with it so shouting at him was honestly how she felt but it made me realise there was noone who really loved him expect us as parents.

So yes I have those days too and thank god all you lovely people are here who know just how we feel.

And then yesterday - by chance I met a couple who had a mentally handicapped child - now in his 40's and in residential care. It was not easy to put him there but they did it and set up a support group locally for others in the same position. Do you know any such support groups near you? Strength in numbers and people who know just what you are going through would help a lot I am sure - if you can find them.

[Clare63]

Many hugs for you Julieanne ~ <'> <'> <'> <'> <'> <'>

 

We are after all only human and I think its quite natural to have days like these, everyday things become enormous and life and the future become very gloomy and frightening.

 

Have no words of wisdom for you, except you are not alone, well not here anyway.

 

Clare x x x

[NickyB]

Hi, Julieanne

 

Only this morning I was thinking how nice it would be to do something without having to think about DSs needs. Then I immediately felt guilty because I love him to bits and felt I was being selfish.

 

So, you're definitely not alone.

 

Nicky <'> <'> <'>

[sonj186]

Hi, Julieanne

<'> <'> <'>

i think we all have times when we would like to be selfish, i see friends out every weekend and having friends round to play all the time and it hurts because Cam never gets asked, when we ask people they always have an excuse not to come i have my in laws asking all the time 'is cam better' they just think it is going to go away!. itr tricky thinking about the future i dont think anyone thinks their child will never leave home when they are old enough, or go to uni etc, so it is a lot to get your head round! everyone deals with things in a different way and we all make different choices we just have to try and make time for ourselfs and try and get as much support as we can. i know i have to be selfish sometimes or i would go off my head

 

sonj x

[sesley]

hi my P is 9 tomorrow and he has the social mental age of about 4 / 5, although his progress seems painfully slow, nether the less he has come quite a distance since 4 years,of age when i was litereary tearing my hair out in frustration , i still get frustrated at him, its my fault not his, maybe what you need to do is, not think too much of other peoples situation and take each day of your lifes and Jays at a time, try you look postively for Jay , each person with ASD is as different as any other human being with different abilites and challenges, take a note of all of Jays abilites and mark them above his disabilites,the plus for your Jay and my P is that in 2008 they have learn't so much more about autism than when the 58 year old was a child ,they don't just get shut away in institutions to stew anymore. That has to be a good thing.

[Enid]

Hi, although my son isnt severely autistic, at 13 he is markedly different to his peers, he is at special school and not coping, and there are many many days when I can barely cope with his violet and extreme behaviour, if something changes from the routine, if I think of the future it makes me panic and think the same thoughts as you, so I dont think, until some days I cant help it and then.... well, I feel just like you, have no answers, but am thinking of residential school, have been to look at a few, then I look at him an the guilt is terrible.... Enid