Aspergers/ASD support thread

mandy.h_2

JBD wrote: »

Worn out mum of two, I'm glad you and your son are getting plenty of support.Sometimes I feel 'ASD' is only a label, we are all individuals with our own set of problems. I think the best thing to do is to take 1 day at a time and just to be there for our children as much as we can.

i know people dont like labels/diagnosises but beieve me if your child has issues and is in main stream education having one is the only way to get extra help
my ds had no label till yr7 and by god did we know it after got diagnosis the support he got was so much better he had not changed though,

worn out mum how old is yoyr son cos CAMHS said my son was not on spectrum either but had communication probs and borderline ADHD

we went for second opinion and they said he was clearly aspergers, so i would keep an open mind for now and see how he is

as he gotolder my ds struggled to develop social skills etc appropriate to his age. when he was younger thought he might just have been shy.

wornoutmumoftwo

DS is 7, and has had help at the special school part time since he was 4. He has been taught to recognise emotions, eye contact (which he didn't have when he was little). My son doesn't have any rituals/routines so I'm thinking this might be why he wasn't diagnosed.

Back when he was first assessed (at 3) I refused to believe he was on the spectrum for about 3 years, and accepted the support reluctantly at the time (though I'm glad I took it now).

They said his social/communication skills may just be the way he's developing, and I'll see how he gets on now, and if needed get him diagnosed again in a couple of years.

My biggest worry isn't the diagnosis, it's the fact he is not participating in his mainstream schoolwork and I think he is starting to get behind as he didn't know how to do his homework the other night as it was one of the lessons he refused to take part in (I get a behaviour thing home every day). I'm going to set up another meeting with the school in about a week's time as this is what's really stressing me out.

mandy.h_2

we were told at three he was just naughty did not pick up on no eye contact or lack of emotion/empathy till later have now taught ds these things,

dla woman came toa asses him yesterday as nearly 16 and should get his own money felt awful not helping answer questions but that was the whole point she needed him to communicate with her,
have to say did really well shows how far he has come in last few years as he would not talk to strangers before.
she says he will get his money from 16 and he has to be responsible so will see.

as for future diagnosis for your son keep a diary dont mean every day but when situations arise note it down also what triggers them cos its usually the trigger that is the problem.

seven-day-weekend

Hi all, not been to this thread for ages, but would like to tell you something that happened during my five month long visit to the UK .

My son (29) and his girlfriend (22) both have Asperger's Syndrome, she is further along the spectrum than he is and claims Disability Living Allowance.

She was spending the night at our house and my son had gone out to his usual Tuesday night Warhammer game, his girlfriend had stayed behind and gone to bed as she has to be up at 04.30 to go to work.

I was watching the TV in the living room at about midnight when my son arrived home earlier than expected; he had ridden his bike (doesn't drive) so fast and was breathing so hard I thought he was having an asthma attack (he had asthma until he was 14).

It turned out that his girlfriend had rung him in floods of tears saying her arm was really hurting. He had rushed home as fast as he could to see to her - turned out it was nothing an ibuprofen wouldn't fix.

I said to him the following day that I had been worried about him riding his bike like that, he could have put himself in danger and that maybe next time he ought to ask her if it was really an emergency. His reply was what touched me.

He said 'If I asked her that she would never ask for my help again. And anyway, that's what the Caring part of the DLA is for. It's why she is entitled to it, she needs more care than other people do in the same situation. So I give it to her'.

I remain chastened and am so pleased that I have brought up such a kind and understanding son who even though he has his own problems has enough insight to help someone else with theirs.

angie_baby

Hi all,

DS was only confirmed last Friday as ASD

Ive just had the childminder on the phone, DS is threatening to run away as he has had such a bad day at school.

Hes started hurting himself, punching and throwing himself agaist walls at school today.

Ive spoken to him on the phone, hes in tears. Im miles away and cant help him. So im now in tears.

I just dont know what to do for the best. He needs me, but yet i need to work full time.

Also childminder since knowing that he has ASD now has all these problems, even though shes great. She worried about having him as she has a baby as well so if DS runs off she cant go after him.

Life is so hard sometimes.

flippin36

angie baby, yes life is very hard sometimes. Especially when you are raising a child with ASD! But what I do know is that nothing last forever. We go through difficult times and we now say "do you remember when...." and then its something new to worry about. :rolleyes:

Whenever I feel there are no answers I aways go back to asking myself what motivates him and gives him pleasure and use that one thing only for reinforcing good behaviour.

Regarding childminders. There are childminders who are trained specifically to care for children with a range of special needs. Look into it and ask around (do you have an autism support group?). You need a childminder who can support your family that totally understand how to deal with ASD behaviour and have strategies to manage them. That way you can go to work feeling confident.

Good luck.

flippin36

Has anyone had any dealings with Son Rise program? Have been looking into recently as I'm feeling increasingly frustrated about my sons progress.

It all sounds very good, if not rather evangelical. Could anyone recommend or discourage me for this program?

Raksha

Peanuckle - my middle son suffered with Psychogenic Non Epileptic Seizures (PNES) when stressed - they can take many forms, in his case it was numbness in his limbs, paralysis and later full on seizures - each one seemed to be different. During one episode he wasn't able to see......... HTH

blue_monkey_2

Seems it must be in the air.

I've not posted here for ages but need a vent and rant before bedtime else I'll take this to bed and will not be able to sleep.

My son has been waiting for an appointment for communications for around 2 years now. The school health advisor called me (after I ranted at the school about the wait time and the fact that no-one that was supposed to contact me did contact me) and told me she had managed to get him an appointment. I was told to make a list of all the ASD or 'odd' things he does. He has been diagnosed with ADHD but I was told not to make a note of those things, just to concentrate on the odd things.

So I started the list, I had around 35 items on the list - and there could have bee more - I've been adding them as I go and something happens.

So I gave the doc the list (wasn;t the appointment I was hoping for but an update one that she was supposed to do in May - better late than never i suppose) and she asked me 'what are the major issues', so I said 'well, all of these'. Yes, but if you had to pick one what would it be. Initially I could not think so I said 'well, it would be nice to be able to have some sort of life as we cannot go out, cannot eat out, have friends round, his cousins are scared of him (and he is the youngest), his sister is always covered in bruises where she has been attacked by him, he destroys everything she makes, etc... She says 'but all of that is not on the list' Me: I was told not to add that by the SHA. She says 'you have not told me any of these' Me: yes I have when we first met, she said 'no you didn't'. And so the circle goes on. She is adamant that she did not know - I know that I told her and it is in a report from his other doctor and she has it in her file. Nothing has changed I told her, she said 'yes it has, all this stuff' Me: But I've told you this, Doc: No you haven't. ARGH!!!!!!!!!!!

Apparently they do not want to 'put him into one particular ADHD or ASD box' however, they have already given him a diagnosis of ADHD so he is already 'in the box'. She did not even seem aware that she had given him the ADHD diagnosis. I have got no idea what that means.

He is doing well at school so 'on a positive note he is bright and doing well at school'. The school teacher came with me and said that she has no problems with him. Yet his IEP says that he needs constant adult attention, that playtimes are difficult and he needs to be refocused by an adult. I just thought !!!!!! is going on here. It was almost like the teacher was taking the !!!! in all honesty but I had forgotten to take the bloody IEP with me so I had nothing on paper.

Apparently I should be using more of the stratagies that school does. (I am wondering if that includes him being stabbed with a pencil and fed stones by the other kids he thinks are his friends - and he does not tell otherwise those 'friends' would get in trouble!!), I mentioned this to the school teacher and she said 'some kids just do horrible things'. W. T. F.

I think that the School health advisor (who is new) came out realising what kind of battle we are facing with all of this.

The doc was very surprised that my son is always saying 'mummy, when you are dead I am going to do such and such'. He says it to all of us. It is matter of fact, there is no sadness that I might be dead one day either. I've got used to it but everyone else seems surprised.

I've now been told I've got to focus on 3 or 4 of the worst issues and write these down. So, instead of having a list of 60 things I am going to put them under headers such as 'lack of danger awareness' - happy to wander off with strangers, will get into a bath and start running the hot water and not realise that it is too hot for him he will just sit there, will get into strange cars to have a look at the interiors, cannot be left alone with other kids, etc... and hopefully we will get further that way. These were all on the list, it seemed to make no difference, she said that I had to whittle everything down to the most important issues.

I've come out today feeing like I have moved 10 steps backwards. This is our 6th consultant paediatrician and today, because she (apparently) did not know about his biting and agression towards his sister (AND i HAD TOLD HER THIS) i'VE NOW GOT TO 'GO BACK TO THE BEGINNING AND 'START AGAIN'. (sorry for caps)

I could have cried at the end, I have no idea how to move forward right now, I am sitting thinking that I will not bother and just leave it until he gets so bad something has to be done, but this could be a couple of years of having a life such as this. I could use the list I have to compare with other kids, they might do 3 or 4 things off this list of 30 but he does every single one and the school will just say 'one of the other kids does that' and 'one of the other kids does that'.

Half of me has decided that there is little point in doing anything else until the school are unable to cope with him - but maybe that will then be too late. I don't know. I feel I need a brea from it all. I do not even have anyone who will take the kids overnight. I am exhausted.

And you know what, if this is 'normal' then I am sick of it, I am sick of not having any sort of life outside this house, sick of having to make sure that his cars are in the same place he left them when he went to school else I'll get a whack, no-one will have him, people do not visit, my daughter cannot have friends over, we cannot play family games, she is covered in bruises, he will not go to clubs as he is scared of what will happen as he does not know the routine, I cannot even go to the loo without him doing something to his sister, sick of not being able to eat when we are out unless it is macdonalds grab and go. When we go on holiday we live on burgers most of the time instead of decent proper food. Last time we went on holiday we went into one restaurant as it was the last place to eat before getting back to the B&B and he pulled his pants down in front of everyone eating. And yes, while it does sound funny it is bloody embarrassing. At what age does it become a 'problem'?. And I've had enough right now, if this is normal then I've had enough, no one else I know has to live a life like this and can at least stop and get food or go shopping. We cannot go to the cinema or swimming. Apparently, maybe a physcologist is the answer. well, give him a damn psycologist if that helps but it is just ridiculous that it has to go on and on round in circles not getting any answers and having to see so many different doctors. I just want some sort of normailty, to be able to do what other families do - is it wrong to envy the life other people have being able to do things together. I am sick of the sound of my own voice. One day I nodded off on the sofa, I was so tired and I got a book in the face to wake me up so now I do not do that anymore, I've had my glasses smashed in my face while wearing them several times when he has gone into one.

Right now I've had enough.

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

(Sorry and thanks for listening, I know that this board is for just that) Today has been a very bad day. I've got to catch up with work tomorrow so i'll be around in the evening. Thanks for listening to a fed up mum having a whinge.

Raksha

blue_monkey, it sounds like you need a big {{{{{{hug}}}}}