Family want to "fix" or cure ds

[szxmum]

Families :wallbash:

 

Just want to scream :wallbash:

 

Any time I want to talk to dh about ds, I get what is becoming a stock answer "This is too big for us to sort by ourselves. We need professional help". It has mostly been me who has contacted school, our gp, CAMHS, AMHS, the NAS and I am running out of steam. So I am beginning to bat it back to him with "who else do you suggest I contact dear" or "you have a go, maybe you'll have better success than me" but it annoys the hell out of me - he immerses himself in his work and his attitude is let the professionals sort the "problem".

 

Then my mother decides to get involved.

 

Ds has improved dramatically since leaving sixth form and it is lovely to see. Instead of congratulating us, I get "When will you be getting him back into sixth form" or "What on earth is he going to do with his life"

 

Errrr

 

"I don't know Mum" and no, I'm not going to push him back into sixth form, college or work just to keep you happy - I've spent the last five years pushing him to go to secondary school and look where that got us.

 

For dh, the professionals can "cure" ds and for my Mum, I can "fix" the problem by getting him back into school or work :wallbash:

 

Just feel alone

Edited June 30, 2009 by szxmum

[Cat]

<'> <'> <'>

 

You cannot 'fix' autism simple as that because people with autism are not broken. There are things that you can do to help someone with autism who is finding or has found life difficult. You have done just that for your son who is 'your' son and that in my book makes him someone who is worth investing in. Professionals do not come complete with a magic wand. They do not have all of the answers and they do not have a cure all pill to make all of life's problems disappear and I am not just talking about autism. There is only so much that professionals can do for any of us sometimes we just have to live with what we have got and find ways to work with it.

 

If your husband cares to read the National Audit Office Autism report he will find that service provision for adults with AS and HFA is almost existent. If you take that on board it beggars the question where do you find these professionals who will help you to sort out your life. They simply do not exist for many of us. You cannot access something that does not exist.

 

In my VERY unprofessional opinion your son probably needs a little time to self-repair then with some guidance and a clear understanding that what he has got is for keeps he might be able to plot a future for him-self. Statistics regarding autistic adults and autism are quite grim sadly. At the moment there are 15% of the autistic adult population in some type of employment. We are only just at the very beginning of trying to improve the quality of life for adults with autism and provision. There is a very long way to go. If you are lucky enough to live in Liverpool, Northampton or Surrey you will have a specialist AS team who can probably be of some help to you if you do not then there is very little on offer.

 

For what it's worth I think that you are doing a great job with your son and the right thing for him at the moment. It's all too easy to say when something does not work out quite as we expected that someone else should be dealing with it but when it come to our children it's not that simple and in a way nor should it be. We have two sons with ASD, one aged 21 and one aged 12 they are not a problem to us. Their ASD often presents us with challenges some of which have been very difficult to find a way through but they are 'our' sons and we don't want them to spend their lives being someone else's problem. It sounds as if your husband is either in denial or is just hoping that as usual you will take over everything that needs to be done. Maybe he needs to spend some time trying to find out about his son and what makes him as a person tick. Hope that makes sense and is not way out of line.

 

Cat

Edited June 30, 2009 by Cat

[Guest featherways]

Hmm, would your dh want to 'fix' formula one racing cars so that they were the same as your family hatchback? Same principle applies to 'owning' one of us. We're not broken, we're different. Formula one racing cars can't just cope on everyday roads - they're too loud, they only have room for one person and no luggage at all, they can't get over road bumps, they can't get across lumpy grass, they need specialised handling. But put them on a racetrack and be prepared to be totally utterly astonished at what they can do.

 

We are not broken. We're being used in the wrong ways.

[frogslegs]

My husband asked me the other day if we could give tablets to DS to make it better! I just stood there in disbelief... My mother does not understand what the problem is and thinks he has schizophrenia... It is a very lonely world for us women carers. My husband is in complete denial and refuses point bland to look anything up, attend any event...I literally had to pin him down for him to read any of the reports and we are not allowed to discuss it. It is just awful. Just as well there is this blog!! It is a lifeline.

 

<'> <'> <'>

 

It sounds as if your husband is either in denial or is just hoping that as usual you will take over everything that needs to be done. Maybe he needs to spend some time trying to find out about his son and what makes him as a person tick. Hope that makes sense and is not way out of line.

 

Cat

 

[szxmum]

If your husband cares to read the National Audit Office Autism report he will find that service provision for adults with AS and HFA is almost existent. If you take that on board it beggars the question where do you find these professionals who will help you to sort out your life. They simply do not exist for many of us. You cannot access something that does not exist.

 

 

It sounds as if your husband is either in denial or is just hoping that as usual you will take over everything that needs to be done.

 

Cat

 

 

I think he is in denial and shock and is frightened and the same as me, stunned at the speed with which our lives have changed. He feels guilty as well because he sees Autistic traits in himself and blames himself. I think he relates to what our son is going through and is probably a bit resentful that he never received any support from his parents. He is not a bad man just a very busy man with his head stuck in the sand - he'll get there, I'll drag him

 

I'm going to go off and read that report - it may help me feel better. I have searched and searched for ASD specialists and have come up empty-handed. The one local parent's support group is on it's summer holidays and isn't starting again till September Thank God for this forum is all I can say.

 

 

Featherways

I'll let you know when we find that racetrack. I'm not giving up on my ds. I think he's bl**dy amazing to have got through this by hisself. I'm in awe and so very proud of him.

[bikemad]

My parents always ask aint there a tablet to sort him out, my mil says its just for attention so dont treat him any differently n only now is my other half understanding more that its long term n not 'fixable'.........drives me round the bend tbh but im immune to it now n just blank them or give them a shut up look.

[Cariad]

szxmum I could have written some of your post, we have the same too. My DH always send me links and phone numbers to call as "I do it better" and says "well I'm in work".. tbh he does type a mean email..

 

Also my mum saw T attack me last Wednesday after arguing with his sister.. I had blood down my arm as he scrammed me so hard, her solution is "Do it back harder" So I replied what about when he punches and kicks me, could you imagine?!?!?!

 

I totally sympathise with you.. everyone has an answer and it's usually not thought through!