Aspergers/ASD support thread

justontime

balmaiden wrote: »

Many Thanks to all who replied to my post.

Can I firstly say that I would not dream of labeling my Grandson, only on an anonymous site such as this would I raise concerns.

My daughter is begining to question his behaviour, coming up with different things which she feels are "strange" about his behaviour. She has not mentioned autism but I think she is thinking along those lines. I will not voice my opinions to her until she asks my opinion, which I think will be soon, and then only to be supportive.

I wanted to have a clearer idea in my head of whether his behaviour was "normal" and she should allow the school to deal with it as they saw fit or whether she should ask for him to be assessed.

S.D.W I have to say that the words you used to describe your son when younger, are just the words I would use to describe our darling boy. Thank you for that post.

When I read the post about your grandson so many things reminded me of my son at that age, he has ASD and dyspraxia. I have written about him before so I will not repeat the details again. I think I knew by the time he was a toddler that things were not quite right, the health visitor even raised the possibility of an assessment at that stage but it didn't happen. He wasn't finally diagnosed until he was 10 or 11 and even then school were not very helpful. My son's behaviour traits make life very hard for him, but he is academically able and not disruptive (more detached than disruptive) so school just called him eccentric, square peg etc. In the end the head suggested that I should go via GP to get the assessment as in educational terms there would always be someone else with greater priority needing assessment. I could see that it was getting progressively harder for my son and I followed the head's advice and went to the GP to initiate the assessment. It took a long time and it was emotionally hard going but it was the right thing to do because my son has more support and understanding now. I would say that if the family are concerned it is better to press for an assessment sooner rather than later.

The delay in getting an assessment and the lack of acknowledgement of the issues by the school and others left me feeling that maybe I was the problem, maybe it was my parenting (despite having older children) or maybe they thought I was exaggerating the problems. The only person who consistently acknowledged the issues and reassured me that it needed investigation was my mum. As a grandparent you are in a very special position and your daughter and your grandson will need your support and encouragement, but most of all it will help if you acknowledge your daughters worries and don't try to make light of them.

I tried to be very open and reassuring with my son during the assessment process. He wasn't happy about it because he doesn't like attention and he was adamant that he was fine and everyone else had a problem. The trouble is that even now I don't really know what is going on in his head and I just cant imagine where some of his thoughts come from. At our final joint meeting with the psychiatrist and psychologist they explained the diagnosis to my son and asked if he wanted to ask anything. In a very anxious voice he asked if he would have to wear a straight jacket now. They were excellent in reassuring him, they even gave him a brief history lesson to explain when and where such things were used and they were very clear about it being in the past and even then not for people like him. He must have worried about that for months, I wish I had known, but he had never even hinted at it. So just be aware that the most odd things can play on the child's mind.

PasturesNew

Having a meltdown right now. Last night I wanted to shower but I cleaned the head and now water won't come out.

And I can't deal with it. I don't even want to go in that room. I want to run and hide away. Lying here, not got up yet, crying and petrified of having to do this as it is in so far out of my comfort zone.

When I attempt any form of fixing anything it will result in a worse situation, like this where the fixing was only something simple like cleaning the shower head. Only it was the first time ever I'd tried and I just thought I'd rub the showerhead while the water was coming out. Doh.

So, told you lot as I need of offload some of this stress and meltdown by writing about it.

Going for a cig now, as I need to mentally go through 1000 scenarios before I can even walk in that room.

seven-day-weekend

balmaiden wrote: »

Many Thanks to all who replied to my post.

Can I firstly say that I would not dream of labeling my Grandson, only on an anonymous site such as this would I raise concerns.

My daughter is begining to question his behaviour, coming up with different things which she feels are "strange" about his behaviour. She has not mentioned autism but I think she is thinking along those lines. I will not voice my opinions to her until she asks my opinion, which I think will be soon, and then only to be supportive.

I wanted to have a clearer idea in my head of whether his behaviour was "normal" and she should allow the school to deal with it as they saw fit or whether she should ask for him to be assessed.

S.D.W I have to say that the words you used to describe your son when younger, are just the words I would use to describe our darling boy. Thank you for that post.

I'd also like to reassure you Balmaiden by saying that as my son has got older he has learned to deal with it better; especially this last two years, he has matured greatly and has learned coping strategies.

He still gets obsessive about certain things (in fact he has given my husband an endless ear-bending monologue this morning about something in a Terry Pratchett book), he stiill will not use matches if he can help it, has never learned how to tie a tie, still not too good at reading other people's body language/facial expressions, still does not always respond in an appropriate manner.

But....although he has had problems with employment in the past, he has had a job at Matalan for nine months and has now got the confidence to start looking for a better one. He has friends now (most of them with problems like AS, or dyslexia/dyspraxia/tourettes and one lad who has spina bifida and is a wheelchair user - they all help each other with their respective difficulties). He even has a girlfriend - they are both staying with us here in Spain at the moment - and she is diagnosed AS. My son is nearly eight years older than her and it is good to see the way he looks after her. They understand each other and their difficulties.

PasturesNew

Right. Shower head did unscrew. Cleaned it all out (it wasn't clogged), seated it all back in properly... had another go. It's still pants.

So I took the brave step of phoning the landlord. Without the guilt that I'd just not tried. So then had to clean my whole place out as they're coming over later to take a look at the shower.

I can't deal with having people around me as it's all relationships that I can't manage. Social interaction is one problem. But there are different levels of relationship interaction which are impossible too. Like the landlord/tenant relationship. Having to speak to them when they are here without babbling or anything

I am best kept away from all people really.

Sue-UU

Hi PN,

I hope it's all worked out well and that the shower head's working well again. It shouldn't really have made any difference whether the water was running or not, but hopefully you landlord will have sorted it for you. Well done to you for even trying to do it yourself though!

I'm not a people person either so I can relate to that very easily. You're never alone with your feelings PN, never forget that.

Sue.

PasturesNew

Sue-UU wrote: »

Hi PN,

I hope it's all worked out well and that the shower head's working well again. It shouldn't really have made any difference whether the water was running or not, but hopefully you landlord will have sorted it for you. Well done to you for even trying to do it yourself though!

I'm not a people person either so I can relate to that very easily. You're never alone with your feelings PN, never forget that.

Sue.

Thanks for your support.

It all ended up OK in the end. I've got the world's best landlord I think. He's very fast-acting, reasonable and nice to deal with. And I never want to be a nuisance to anybody. He and his wife both kept repeating that it was no trouble and if only all their tenants were just like me. It seems I am perfect. And they seemed to mean it, so I didn't feel too bad.

They weren't here long either, they popped by, decided instantly they might as well get a new head/lead, then turned up a bit later and fitted it in 5 minutes' flat. All sorted.

After the stress of that I treated myself to a takeaway, which was pants (I'm really finding takeaway food VERY salty these days, that's 2 I've had to bin - completely different ones too. Chinese last week, indian this week. VERY salty. Odd).

Then I had a snooze. Now wide awake again and I've chilled out from earlier.

Sue-UU

Brilliant news PN! I was thrilled to read that it was all sorted out for you.....and you landlord and his wife seem wonderful people! What a change from what we normally hear about landlords.

We've given up on Chinese meals here as they're nothing like they used to be, perhaps all the Chinese have gone back to China!!!;)

Thanks for letting me know what happened PN, it's always good to know the outcome - even more so when it's so good.

Sue.

purplewombat

Hoping that someone on here can give me some advice. Basically we got the diagnosis for my son in Decemeber. I phoned the school and asked what would be happening next and was told that they would be applying for a statement. I've been in this morning to pay for his school dinners and thought that while I was there I would ask how this was coming along and whether it had been applied for yet. I was told by the SENCo that they would NOT be applying for a statement as the only children who get them are ones who are very very bad. Apparently since they got the diagnosis through he has been observed for an hour by the special ed. guy who has decided he doesn't need one. But its ok because he has an IEP. I pointed out that he has had this since he was 5 and there are areas where he hasnt made much progress at all, which she fobbed off with oh well you should be helping him at home with this stuff. We ARE doing that. She also said that we were invited in to discuss the IEP every month or so and made it sound as if we never bothered coming in, when we go in every time.
I do understand that priority should be given to the kids who are worse, but it seems that the only way to get any help is if the kid is seen to be badly behaved and disruptive. My son doesn't do that in school, but he does have shutdowns were he refuses to move or speak when he feels uncomfortable. This, along with the fact that he is struggling with his work because he doesn't understand things the way that they are being explained (he needs to see things visually or it is very difficult for him to understand, and the teacher has not got the time to do this as well as look after all the other kids in the class as well), doesn't seem to be important enough for him to get any extra help.
Sorry for the rant, I'm just really angry with them. I'm sick of being told one thing and then another thing being done, or not being told whats happening at all. I really don't know what to do now. Do I apply for a statement myself, or do I just accept what they have said??

justontime

purplewombat wrote: »

Hoping that someone on here can give me some advice. Basically we got the diagnosis for my son in Decemeber. I phoned the school and asked what would be happening next and was told that they would be applying for a statement. I've been in this morning to pay for his school dinners and thought that while I was there I would ask how this was coming along and whether it had been applied for yet. I was told by the SENCo that they would NOT be applying for a statement as the only children who get them are ones who are very very bad. Apparently since they got the diagnosis through he has been observed for an hour by the special ed. guy who has decided he doesn't need one. But its ok because he has an IEP. I pointed out that he has had this since he was 5 and there are areas where he hasnt made much progress at all, which she fobbed off with oh well you should be helping him at home with this stuff. We ARE doing that. She also said that we were invited in to discuss the IEP every month or so and made it sound as if we never bothered coming in, when we go in every time.
I do understand that priority should be given to the kids who are worse, but it seems that the only way to get any help is if the kid is seen to be badly behaved and disruptive. My son doesn't do that in school, but he does have shutdowns were he refuses to move or speak when he feels uncomfortable. This, along with the fact that he is struggling with his work because he doesn't understand things the way that they are being explained (he needs to see things visually or it is very difficult for him to understand, and the teacher has not got the time to do this as well as look after all the other kids in the class as well), doesn't seem to be important enough for him to get any extra help.
Sorry for the rant, I'm just really angry with them. I'm sick of being told one thing and then another thing being done, or not being told whats happening at all. I really don't know what to do now. Do I apply for a statement myself, or do I just accept what they have said??

That all sounds so depressingly familiar. In my experience an IEP is meaningless, they just fill it in because they are required to, it doesn't mean anything. My son does not have a statement and I still have to fight to get the school to address his needs. He is now at secondary school but his primary school constantly made me feel guilty and negligent in the way that you described. It is just my opinion, but in your case I would apply for a statement, it is a bit harder in our case as in academic terms my son achieves very well, but he really struggles with all the ordinary stuff like being in the right place at the right time with the right equipment. He is so literal that he gets in to some really worrying situations. Hopefully someone will come along who can give you more detailed advice about getting a statement. Good luck.

fallen_angel_69

i have just and still in process of applying for a statement I got fed up of being fobbed of by the school also saying dd2 iep was enough have wrote a letter to local lea's special needs dept saying why i wanted a statement and school wouldn't do one.A lady rang me a week later and said she wanted to confirm a few details with me and she was sending a more detailed questionairre to fill in and she would send forms to school to fill in I told her school would drag their heels over this and she said there was a set timescale the school had to stick to i think it's 6 weeks I am still in middle of all this process but i know it's being done as school rang me this morning to tell me they had recieved some forms and did i know about it so i told them yes i had organised it because i am fed up of being fobbed of.I would say go above your school contact the lea ask for a statement you have nothing to lose by trying
also there's an internet site ipsea.org.uk they have helpfull information