Going round in my head today

[Jill]

My son was dx as mid spectrum autistic in Sept this year. Initially this was a real blow to me, even though I'd suspected that there was something wrong.

 

Now my view is that I wouldn't change him for anything. Being autistic is part of who he is and, if he wasn't autistic, he wouldn't be the same boy and I wouldn't want that cos I think he's the best boy in the world (altho I may be slightly biased. )

 

However, when the paed gave the diagnosis, he also said that my son would "grow into a vulnerable adult who will always need someone to look after him."

 

Initially this comment sort of got lost in amongst the emotion of the day. Recently, however, I find myself dwelling on this more and more and it's starting to send me crackers with worry.

 

Some days I dismiss the comment and think "how could he make such a long term prognosis for ANY child, surely it's far to early to have that sort of long term view with any certainty" (my son is only 4 in Jan). But then other days - unfortunately more and more often just recently - this really does prey on my mind.

 

I'd really appreciate any thoughts from people with experience of grown up autistic people - did they ever get this prognosis, was it proven to be a load of rubbish, what strategies help them to have independence?

 

Sorry about this - it's just really preying on my mind I want my beautiful boy to have a full and independent life. I worry what will happen when we're not around to care for him any more (I guess we all do for all of our children, NT or AS).

 

I know I should take each day as it comes, but sometimes that's easier said than done.

 

Thankyou

[ceecee]

Jill

 

I feel for you.Have some of these <'> <'> <'>

 

Your son is very young and it maybe he is higher up the spectrum than people may think now.As your son gets older he may change a lot.I am not saying he wont be on the spectrum somewhere but later on the diagnosis may be changed because he may alter.So it might be he could be high functioning autistic or Aspergers.It's too soon in the day to tell.

 

I have mild A.S. and I don't need help or support.I lead a normal life I go to work am happily married and have two children.

 

No one knows what the future holds and i know the future is playing on your mind.But all I could advise would be to take one day at a time and carry on being a great mum to him.You sound like a loving caring mum and it's only natural you should worry but one step at a time.

 

Take Care

 

Have a lovely christmas.

[lindy-lou]

hi jill,my nephew is 13 and has AS,a few years ago his consultant(whos also my AS daughters) told my sister that he would never lead an independant life and would need care all his life,as you can imagine,like yourself,this upset my sister deeply, but like i said to her,this doctor sees daniel maybe 3 times a year,so how she can make that judgement on 3 30 minutes sessions a year with him i do not know,i think dan will be able to live alone and independantly but with supervision,he will have trouble looking after his finances etc,but this is far removed from not living independantly and needing care his whole life,use your own judgement as to what your son will be capable of doing,its far too early to predict the future and what capabilities he will have when hes an adult,i know we worry greatly about how there going to cope as adults but we can only prepare them and teach them the best we can,what the future holds will be revealed one day,try not to worry too much just now and enjoy what he has left of his childhood,and try not to think that what doctors say is gospel because we know our children better than anyone ever will.

 

[Paula]

No one knows what the future holds.

 

My son is As and hes 12 in January.When he was 2 or 3 the peadiatricain said hed never be able to read write hed never amount to much basically.The teachers at a mainstream school also wrote him of.

 

Well,he can read,write,ride a bike,swim,he goes to a special school and recently took a science sat and gained a grade 3 which is an average grade.He talks well we hold weird and wonderfully funny conversations.Hes loveing and careing he does show emotion and he will give me a hug.

 

Yes hes a stubborn begger yes he can be at times an imovable object.But boy oh boy has he exceeded our initial expectations.

Hes learnt to adjust and adapt to certaine things as hes got older,his tantrums are virtually none existant and if he feels under stress he can now reconise this and takes his own measures to eleviate the problem.

 

 

Near where i live theres a special sheltered house.Four adults live there with permanant round the clock carers. One of the adults is an Autistic man.Ive chatted to him and he leeds a full happy life.He has a pt job,drives a car and has a girlfreind.But needs help with sorting out the bills and making meals and stuff.

 

Its hard when you realise the child youve got insnt the child you imagined you had.Its kinda like a bereavement as all the hopes and dreams you initially had fade but they dont die you replace them with new ones.And take it from me the future is very birght and a totally amazeing place when youre a mum of an autistic child.

 

Have a cry we all do but please please dont take what a dr says as the gospel.

 

<'> <'> <'>

Edited December 22, 2005 by Paula

[Guest flutter]

he may not become vulnerable,

i bet you are a fantastic teacher and he will be able to cope in the "big bad world" and that is reletive, think of all those who dont have our kids issues, have everythiong goin for them and still dont cope.

It is such early days to think of that, just live for today, and 2morw,

tc

C xx

[baddad]

Hi jill -

First of all, I'd agree with everyone else that 4 years old is FAR too young for anyone to make any sort of long term predictions, and there ARE plenty of adults with ASD who live full and fulfilled lives...

One thing I would add is that sometimes the things we want for our kids aren't things that actually matter very much to them... That doesn't stop the 'loss' hurting US, of course, but it is sometimes good to think about happiness as a personal construct, rather than the social one (marriage/kids/work/friendships etc) we usually consider. Chances are that if your son wants those things (or parts of them), he'll find some way of achieving them on his own terms, but it may be that happiness to him comes in a different package altogether.

So far as strategies go, I think all you can do is be adaptable to your childs evolving needs and interests... My own experience is that children with AS tend to learn in quantum leaps - rather than in the linear way that most kids do - and the best you can do is jump in and exploit the hell out of any advance as it happens! Thinking outside the box, and making learning fun and relevant to the individual tends to pay off far more than trying to guide them through keystages and curriculums that may be completely alien to their view of the world... A good example is Temple Grandin, who learned almost everything by way of her interest in animals: maths (how many cows/how big a field do they need/what's the best shape?), English (spell or write cow/sheep/field) etc...

I think the second paragraph of your post says you're getting the most important thing right: being autistic is part of who he is, and you wouldn't change HIM for the world... Sometimes that's the hardest bit to get your head round, so you're doing brilliantly to have accepted that in just a short couple of months...

L&P

BD

[reuby2]

Hi Jill

My sons dx was confirmed in november, that he has an Autistic Spectrum Disorder, he's 7. When I first found out I was so concerned for his future (will he get married, have a job etc). I thought I had adjusted (thanks to everyone here!) but sometimes like today I do still get upset. I have stopped trying to look too far ahead (well mostly except for days like today!!).

 

As for what doctors think and say, my father had polio as a child and was told by a doctor that he would never work and would have to claim disability for the rest of his life.......my father has worked every day of his life and his last job was a really horrible one working on the presses at a rubber moulding company..it was dark and their were fumes etc and he did 12 hour shifts to bring a bit extra money for us.

 

My Mum has rhumatoid arthiritis and she was told that she would be in a wheelchair by the time she was 30 she is now 66, still works and runs around helping people out.

 

Doctors aren't prophets...no one knows what the future holds. We are all taking the same journey together and we are all here to help.

 

Keep your chin up chuck <'>

Take care, <'>

[oracle]

My son is now 18 and still living at home. I expected that to be the case for sometime yet BUT I do believe that David will one day live independantly. David talks about this happening a lot now. Yes he is vunerable (because he is very trusting and accepts what he is told mostly without question)and I expect that he will always need someone to turn to. But I do not think that this will stop him from being able to take his place in the world by himself. I certainly hope not. My biggest concern is that the type of Services that David will require do not exist for the most part and that is something I AIM to change.

 

David had a serious breakdown a few years ago and he was pretty much written off. But never say never because with the right kind of input then our children are capable of many things. David is a dab hand in the kitchen, has just finished changing his bed and hoovering his room and is getting better at being able to manage a budget. It's not that I am lazy or cruel but I have been determined to build life skills into David's routine. He can manage a conversation now with a stranger and is just about there with social chit chat.

 

You can not possibily tell what a child of 4 is going to be like when they are 24 and I agree with Baddad most do make huge leaps in their learning abilities so when the time is right sieze the moment.

 

Carole

[Jill]

Thankyou so much to everybody that has replied to my post.

 

I'm sitting here with a tear in my eye, but it's a good tear that not only are you all kind enough to help me through this, but also to read all the positive stories about how our children grow up.

 

I'm usually a positive person myself, but sometimes things like this just drag you down a bit.

 

Mind you, driving to nursery this morning with The Boy singing "We wish you a merry Christmas" at the top of his voice helps a heck of a lot - how can you be sad when you've had such a lovely drive into work?

 

On the development side, I have to say that he's doing really well at the moment. Our LEA have got him into a special autistic nursery part time & the difference in him over the last few weeks has been remarkable. He still doesn't say much (sings a lot - always has - but not much talking) but he now communicates with us & that is so brilliant. Not only do we now know what he wants most of the time (and it's amazing what he can get across without saying a word) but he's happier cos he's not frustrated all the time.

 

Anyway, enuff of me blathering on. I just wanted to say thankyou very much for your kindness.

[lindy-lou]

My son is now 18 and still living at home. I expected that to be the case for sometime yet BUT I do believe that David will one day live independantly. David talks about this happening a lot now. Yes he is vunerable (because he is very trusting and accepts what he is told mostly without question)and I expect that he will always need someone to turn to. But I do not think that this will stop him from being able to take his place in the world by himself. I certainly hope not. My biggest concern is that the type of Services that David will require do not exist for the most part and that is something I AIM to change.

 

David had a serious breakdown a few years ago and he was pretty much written off. But never say never because with the right kind of input then our children are capable of many things. David is a dab hand in the kitchen, has just finished changing his bed and hoovering his room and is getting better at being able to manage a budget. It's not that I am lazy or cruel but I have been determined to build life skills into David's routine. He can manage a conversation now with a stranger and is just about there with social chit chat.

 

You can not possibily tell what a child of 4 is going to be like when they are 24 and I agree with Baddad most do make huge leaps in their learning abilities so when the time is right sieze the moment.

 

Carole

 

nice to hear the positivity in your post carole,you sound like a great mum who's put an awful lot of time and love into helping david achieve,your certainly not cruel or lazy by making sure david has these life skills,if we dont teach them these things then the possibility of independance is much further away,i hope he gets his chance at living independantly carole and jill...everyone on here shares your worries and concerns,glad you feel a bit better now <'>

[elaine1]

many people function very well with AS, look at all the famous ppl out there with it, and many ppl get married and go on to have produvtive lives. It is hard not to worry i know but we never know what the future holds.

 

tag by keeks @ secret garden

[Zemanski]

One of the things that has struck me is that we seem to need to grieve for the loss of our dreams for our children - dreams sometimes we didn't even realise were there.

But at the end of the day my dream for my children is that they are happy, healthy and fulfilled and that hasn't changed in essence, only in how I percieve the shape of my children's futures.

 

I also think that we are quite lucky in some ways - life will be harder for our children, people will write them off and put them down, we will have to support them for far longer perhaps than their NT peers; all that is pretty depressing sometimes

but they will not disappoint us in the way NT kids so often do

we will always value the progress they make and always see the positive in their choices because we will know that every step they take is a precious achievement.

 

I look at my kids, both with struggles to face in their lives, and I feel very, very proud of them - not because they are doing well by other people's standards but because they are on the way to being the healthy, happy and fulfilled adults I dream of.