Aspergers/ASD support thread

blue_monkey_2

Morning everyone,

Great idea for a change of thread name Snaggles - much easier for everyone to find - we already have new people posting so the more support we can offer each other the better. Especially when we have had a bad day I guess!!

Penguin you should not feel bad in the slightest. My son is 3, when he was at the other nursery school I was being pulled aside for his behaviour nearly every day. In the end I was so sick of it - and because he did not legally have to be at school - I just stopped sending him. The school play was a nightmare, he was forced into a costume that he then proceeded to rip off and then spent the whole of the play under my chair. i found it a complete waste of time and so stressful and embarrassing for everyone I wiah I had not bothered sending him. I have always just put it down to it being one of those thing, my brother was very much the same as Ryan is now so maybe there is a family history of this but 'way back then' things like this were not disgnosed and mums were left to get on with it. Apparently my husband was like it as well so you kind of assume that it is just boy behaviour and yes, everyone does tell you the same. However, getting them to nursery and then being unable to adjust you find out that not everyone is the same and that our children cannot fit into school. I've put up with it until now (my son is 3 too) because up until now it has been easier to deal with but the school are the ones who picked up on him having problems (he is morning nursery tied to the school he will go to).

The thing is, when they are younger they can be strapped into buggies/shopping trolleys/etc... to stop them running away and held when they have tantrums but there comes point where you can't do this and they get too heavy to fight with and then, because they have more of a mind, other things become noticeable. You should not feel bad because much of the things he does could be put down to it being 'boys will be boys' but there is that little bit more. Both our boys are being looked at early and I can promise you that you and I are both very lucky as children are not really seen until a much later age and stuff is often disregarded as has already been mentioned - my doctor said early is better than late and felt a need to refer him - but CAMHS (the Children and Adult Mental Heath Service) has refused to see him as he is not 4. My doctor has now referred him to the Community Paediatrician and my HV referred him to the CDU but there is a lot of waiting to be done really.

In the meantime you should just go on as you have been and just look on it as waiting for as any other appointment, if you go around thinking your child has something wrong it becomes a problem - see if you can get more info on dealing with him rather than what you will do if he gets a diagnosis and, at the end of the day, he is still the same boy that he was before, nothing has changed has it? I don't know if anyone else agrees with me or sees it this way so apologies if this is not the case and I offend anyone with the way things are written, but I am getting a 'diagnosis' so I can ensure I know the best way to deal with my son and get him the help he needs at school. his behaviour at home is pretty much by the by to be honest, when he chats for England I tend to just say yes and no and hope he does not ask me too much about what he has said (sorry, that sounds mean but he does talk A LOT!!) He is very bright and knows the alphabet and all his numbers, but getting him to show he knows this is difficult and if he needs the help in school to make sure he stays focused then I guess the diagnosis would help me do this and he will continue to get the TA and the understanding. This is al I want. What I fear more than anything is him getting excluded from school. Everything else I can deal with - and do deal with already - you adjust your life (such as not going out, LOL) but eductation is something I cannot substitute myself so I need to make sure he does not lose what he is already getting. I hope that makes sense. I donlt want to see him as being a child with a 'special need' but more one that just needs that little extra bit of attention at school to get him through the day.

Thanks for the tips on eating out, yes, I guess I should look at it like that, however, I am always thankful when we get a table on it's own in the corner, ha ha!!

Well, todays another day - my daughter has been invited to a party at one of those play areas so he has to have a sit down dinner. Fingers crossed that will be fine, we have good days and bad days I guess - does everyone else find this.

As for the play - LOL, for us it is Thomas as he has a huge Road & Rail set. Yesterday my husband had to go to work and I told Ryan he had to go because he was going to earn some money so we could by him some more trainset. Well, 5 hours when my husband got in the door he was on him asking where was the money so mummy could buy the new train track. Then BIL bought presents around and Ryan spent half an hour telling BIL how he could tell there was track inside it while BIL just looked around uncomfortably and told my husband he was going to be disappointed on Xmas morning. LOL!! Oh and now he has an imaginary hamster. Ours is suffering badly, he has no fear of it despite how many times he has been bitten by it and he will just thrust his hand in her bad and grab her out, the poor thing is petrified, I won't buy another when this one finally pops it's clogs. No matter how many times I try and explain she will die if he blows on her face he doesn't seem to listen. As a result we have a hamster that is absolutley petrified of everyone and everything. In the morning we will come downstairs and the cats all leg it out of the cat flap in 5 seconds flat else they know they are going to be dragged around if Ryan finds them in the house (we have 5!!). Anyone got any ideas how I can get him to leave the hamster and the cats alone? Being bitten and scratched is nothing of a deterrant unfortunately!!

Well, breakfast time is calling and I have to get sorted for this party. They are sitting fighting while I type this message, oh happy days. keep smiling - it's only 8am!!

Speak to you all later.

Just edited to add: School play time is coming up again. I'e offered to keep Ryan off school for that time but he has a part as a snowflake and he has his classroom assistant sitting beside him and if he starts acting up she will take him out right away and they have him on the end for 'easy access' LOL. I hate the thought of him ruining it for the other children and I am always concious of things like this. I have to admit that I have found the school you get into/choose will be the factor on helping you get through these times. An understanding school (for me) has made my life so much easier and I find it easier to leave him at the door knowing I won't be pulled aside at the end. The first time he bit a little girl I was pulled aside with the other parents and the children and the Nursery Teachers said 'I am sorry but Ryan has bitten XX today'. I was mortified and then had a lecture in front of the other parent about biting. School then turned into 2 1/2 hours of dread of getting a call to say I was going to have to go and get him and then going to get him meant I felt sick with worry. Since having the TA I don't have this and I just find everything easier. However, I do appreciate that I am so lucky to have this already at such a young age and other here are going to say they don't get this. In February we are being evicted as the landlord is selling (that is my mother BTW and being told 6 weeks before Xmas to leave was not funny!! Another story though) and the thought of having to leave the school is something I am dreading as we are relying on the council to house us. We are hoping that Ryan having the TA will give us 'social points' as then we will get to the top of the list and be housed, if not we will be stuck in one room in a hostel on the day before the bailiffs come to chuck us out. However, I have already told them that whereever I am sent my son has to go to this school because he is on an IEP (Individual Education Plan) and has the TA. Who else would give those up to go elsewhere and find they cannot cope with your kids? I'll drive 50 miles a day if I have to I guess.

samf1971

Hello everyone.

I'd seen this thread before but not posted but as it now seems to be a more general thread I thought I would pop on and say Hi & introduce myself

I've a 2 year old boy (Ben) who I've had concerns about since he was about 20 months. I raised my concerns with the HV who arranged for an early 2 yr assesment (whch really was just someone came and asked questions) My concerns were/are he can't & doesn't point, doesn't say a word although is very loud at times in his own way, just makes noises. He spins around and when excited flaps his arms and claps he loves buses (well their wheels really) and anything that spins around, hel'll turn over his cars and brick truck just to play with the wheels. He's limited in his ability with fine motor skills, and although walks well, he has no sense of danger and as he also won't hold hands he has to be on reigns when we're out and about for safety, has difficulty with imaginative play (SALT scored him about 12 months with symbolic play) can't stack bricks etc. All that said he is a gorgeous bundle of fun who has a real giggle and he does have quite good eye contact and will be rather affectionate when he wants (though when he has hurt himself he's not too keen on being hugged)

I've had SALT and have to go back to them in Feb, been to dietician as he can't feed himself yet and I still have to cut things up quite small for him, althouh he will eat just about anything. I've got paed in January (I thought it would be about March! but they called on Friday with a date of 7th January) for an assesment including an autism check. Not really sure what they do so any advice would be of help.

I'm not worried about potty training etc yet and take that as it comes, I'm planning to home ed so not too worried on that score, just wish my little man could say something to me! and that's I think the thing that worries me most and so I'm looking into PECS and makaton to help

big hugs :grouphug: to everyone It's so important to have these threads, I've no family to speak of (apart from my wonderful & devoted husband) so these threads are vital for me to speak to others

Carrera74

I saw the title of the thread and thought I would post too.

I have a 10 year old darling son who appears to be on the autistic spectrum. I've known forever that's he a little bit different but always put his social and emotional problems down to what he saw and heard during the not so nice relationship I had with his Dad. I'd had problems at home with his behaviour and went on the Webster Stratton course (FANTASTIC and should be mandatory for all parents!!). The course helped us at home but then at the beginning of year 5 it was more noticeable that he was struggling at school. He was very anxious and was struggling to stay in school without being excluded due to anger and lashing out. In January this year he had another exclusion of 16 days and he was referred to a short stay school. I was mortified as I didn't want my young man to go to a 'special school' (that soon changed). That school has done loads of my DS. They are fantastic and I couldn't praise their work enough. They have helped to increase his self esteem and also taught him strategies to deal with his feelings. He really struggles to differentiate between anger, sadness etc. It all feels the same to him. He was integrated back to mainstream 6 weeks ago and he's doing okay. His new teacher is great and he has got a proposed statement based on his behavioural, social and emotional special needs. As part of the statement process we saw the Community Paedatrian who diagnosed Aspergers Syndrome although on the report she only listed his signs of this and didn't actually use the label.

Last week I went for his results of his Occupational Therapy sessions and the OT said that she would be surprised come early next year when he finally has his autism screening if he doesn't come back on the spectrum. It was a relief but also awful hearing her describe by son to a tee and she rhymed a whole lot of things off what we could do to help him at school. It was upsetting to hear her describe him as a child with medical problems. Although for him to be labelled would help him and us. I cryed all night. Not sure if it was through relief or just sadness that this is something I can't fix for my munchkin. I can't believe how much has happened this past year. So many emotions for all of us.

PS. Great thread. It helps to have somewhere to let off steam. Hugs to you all x

samf1971

I understand what you mean about emotions. I've not had a diagnosis yet and don't really need one to know that my boy is different, but need it for all the extra help but this weekend I've been all over the place, been uncontrollably sobbing about it but when it all comes down to it he's my boy and he always will be.

duchy

I was saying in a PM the other day that I get a lot of PMs because of my sig and we need a dedicated ASD support thread and was going to think up a chatty catchy name and start one. Looks like you beat me to it Snags As this started as been about Ryan -do you want a new thread anyway or shall we just all hang out here ? I'll bring coffee and chocolate cake to either
I can so relate to that mixed feeling when you get a diagnosis-a mix of sadness that it isn't something with an instant fix and relief that it actually has a name and you're not alone !

Carrera74

Coffee AND cake? I'm in

Snaggles

Blue Monkey - I know exactly what you mean about school plays. The last one I went to, I spent the whole time crying (luckily I had a cold anyway so I hid it behind tissues ), because Ryan wasn't allowed to join in anything - he just had to sit silently on the floor next to the teacher. When I asked about it later, he hadn't even done anything wrong - they had just assumed he would do! :mad:

I completely agree that you can start to get information on dealing with the behavioural issues before you get a diagnosis. I also found it was helpful to start noting down any behaviour you think is out of the ordinary, even if it doesn't seem connected, because any evidence you can collect will help them with the diagnosis. For example, Ryan is 7 and is still not dry at night. I had no idea this was linked to ASD, so I didn't mention it until recently, but now I know that many children with ASDs have this issue.

Hope the party goes okay and isn't too stressful for you.

Sam - your little boy sounds lovely, it must be hard for you if he doesn't speak, but if he is anything like Ryan, his giggle will be completely magical and infectious! We didn't find potty training a problem really, he was dry through the day quite early, it's just the night time that is a problem. He gets very little warning that he needs to go (as soon as he realises he needs a wee, he is 'desperate'...lol), but as long as we always check where the nearest loos are, we do okay! (and him being a boy makes going to the loo in unusual places a much more flexible affair )

Carrera - it sounds as though you are making some real progress with your son, that's fantastic. I know I have shared your worries about Ryan be sent to 'special schools' or being excluded, because you feel as though there is such a stigma attatched, and people will judge you, but I've got to the point now where I don't really care if people do judge me, as long as I can help my little boy.

I think the tears are perfectly natural, and I'm pretty sure I will cry no matter what they tell me about Ryan's diagnosis.

Have any of you read the email 'Holland' that is about special needs children? I will copy and paste it on here if I can find it, as it helps put things in perspective a bit.

Snaggles

Hi Duchy, sorry, didn't mean to jump the gun - I don't mind what we do about the thread really - this one has quite a lot of info on it already and people may have subscribed, so it might be worth hanging on to it for a bit longer and then start another when it gets too long? What do people think?

*eyes up Duchy's chocolate cake*

penguin83

Morning everyone - thank you to everyone for your words of support - I am very new to this!

One thing I was wondering was about his behaviour. He is not naughty or hyperactive - quite the opposite. He is a very quiet little boy. He hides away in social situations either under tables or in other rooms depending where we are. His tantrums are silent. No screaming or shouting just lots of throwing. Is this 'normal' for ASD. We have been attempting potty training and it hasnt been too bad, but he refuses to wear underpants. He either has to be naked or wear pullups - anyone have any tips on getting him to wear underpants. I dont think he understands enough yet for sticker charts etc.

Thanks again to everyone. x x

duchy

< Puts out the chocolate cakes> No worries either way Snaggles. It's nice and comfy here Milk and sugar ?>
Penguin-have you tried underpants with current obsession (Dr Who, Thomas, Dinosours -whatever) on them ? Must admit Josh wasn't properly trained until 4-so either AS kids are slow to train or I'm useless at toilet training.