decisions for the future?

[lorryw]

My son is almost 24 and it is slowly dawning on us that living at home with us is not the best option for him or us.

He has autism,challenging behaviour, non verbal and severe learning difficulties.

We have always lived each day as it comes and just got on with things as best we could. We have asked several times for some kind of help but it never appears or is totally inappropriate. We asked for help with his behaviour in July of last year and 6 months later we were allocated a learning disability nurse. Very sweet and the same age as our son, but she hadnt a clue how to be of any real help. A visit from 2 consultant psycologists was a waste of time, we had done a wonderful job etc, but gave us no help with our problems.

We have fought for a local day service which will soon happen but the "expert" guidelines I have just read produced by the consultant psycologist are simply a rehash of stuff from his school days (he left 6 years ago). We have cared for and protected him and I think we have run simply out of energy and patience.

I think our first step is to access some respite, Im sure he is sick to death of the sight of us, he is at home with either of us 24 hours a day.

I am only putting this into writing because I cant believe we have made this decision and I feel incredibly sad.

[Paula]

<'> <'> <'>

 

 

 

 

[lisac]

hi lorry, my son is 22 and i am in the same position as you and i know exactly how you feel, it is horrible.Maybe when your sons new day service is up and running, plus getting some overnight respite might change the balance a bit? We have one weekend a month respite and it does make a positive difference. It must be natural to feel like this once they get to this age, though, x

[smiley]

I've PM'd you <'>

[Suze]

Hi Lorry, I can totally understand how your feelin <'> , you know for such along time you,ve really struggled to get your son access to some day provision, lets not mention the NAS incident , and its no surprise that after all this time you,ve run out of steam and energy to keep going.I,m sure knowing what a caring mum you are that your doing whats best for your son and you, biggest hugs <'>

[Kathryn]

Lorry

 

<'> <'>

 

You've been let down so many times and fought so hard.

 

Thinking of you

 

K x

[Karen A]

<'> <'> <'> Thinking of you lorryw.Karen.

[Tally]

Hi Lorry,

 

I don't think you need to feel sad. Parents don't expect to still be giving 24-hour care to their adult children. It must be an enormous drain on you.

 

I hope you get the support you are looking for.

[baddad]

<'> <'>

 

Totally agree with the other posts, and Tally has said it very succinctly.

At 23 it is highly unlikely there would be any major changes in your son's support needs...

With that in mind, supporting him in finding provision that is appropriate to those needs and helping him through the transition is the best thing to be doing to secure his long-term welfare. For many, many disabled adults that transition comes from 'crisis' - when circumstances leave no other options. What you are suggesting is much, much better - a staged and gradual process, taking full account of the range of options available.

Huge <'> for making a very tough (but undoubtedly good for him and you) decision.

 

very, very best

 

L&P

 

BD

Edited April 20, 2009 by baddad

[Sally44]

I have a child on the autistic spectrum - but more relevant to your post is that I have an older sister with learning disabilities. She too lived at home 24/7 (and we used to share a bedroom), until I persuaded my parents to involve Social Services. I know my sister is probably more able than your child. But when you are no longer alive (sorry to be so blunt), your son will have to live somewhere. My sister was also sick of living with parents, and parents sick of putting up with her behaviour. It has improved alot since she moved out. And she didnt move out until she was in her 40's. She has amazed us with what she could actually do. We have also had very frustrating times when services were withdrawn, or outside agencies not pro-active. But that's nothing new?!? But she is happier, and family members and outside agencies take care of finances, accompany her shopping, help with cleaning, pay bills etc. It is kind of a bedroom away from the house (she lives in sheltered accommodation).

So please, please, please don't look at this as failure in any way. Look at this as trying to prepare for the future. And when they have found somewhere, he doesn't have to be there 24/7. He can visit and so can you. Or there might even be a halfway solution ie. 4 days at home, long weekend away.

In my experience, as long as you are prepared to continue doing everything, no-one is going to get involved.

It sounds like you have had some real issues in the past and present, so if this post is totally inappropriate I apologise.

[bid]

Hi Lorry <'>

 

I think you are giving your son a real future by starting this process. Hopefully he will end up somewhere with other young people and be encouraged with his independent living skills and so on...he'll probably have a better social life than the rest of us!

 

It must be such a tough decision, but you are acting in his very best interests just as you have always done.

 

<'>

 

Bidx

[lorryw]

Thank you all for your opinions and good wishes.

I have just contacted my sons social worker to get the ball rolling.

Reading all your posts has cheered me up. Sometimes the blindingly obvious is very hard to see when you are in the midst of it all.

Loraine