Aspergers/ASD support thread

NoahsPennilessMummy

BM, my son sometimes pretends to be a cat called "smudge"......someone in my ex dh family has a cat called that......he will meow and crawl about and tries to put his food on the floor on his plate in the corner of the kitchen and be on his hands and knees eating it.....i put a stop to that tho as i felt it was going a bit far but he still pretends to be a cat......recently we were on a bus and he decided to do it and crawled around under peoples seats etc and the driver chucked us off the bus! not one of my better moments:o

shazrobo

big hugs blue monkey, sounds like your having a tough time at the mo.
has ryan got a statement yet? as noah's mum has already said, its easier to get support in school with one.
my twin boys have severe ADHD, and even tho they were 4 weeks premature, at a week old they could turn over, my hv commented babies cant do that at such a young age, but she finally believed me when she witnessed them for herself. they both pilled them selves up from a very early age, and as we had their cots side by side they climbed over, so they were in a proper bed by 12 months. they also walked early too, but as they are my only children i had no others to compare them against at the time and thought they were normal lol.
at age two when i moved to the house i'm in now, the boys barricaded themselves in their bedroom by moving both single beds behind the door, no idea where these children find the strength, comes in handy now they are twelve tho, they can help lift the shopping from the car.
to be honest their strength also scares me, as when they have violent temper tantrums, they can seriously hurt, daniel pushed a teacher so hard, she fell backwards, banging her head on a desk and ended up unconscious.
he's not an evil lad, another boy had being bullying him, and he was going outside to calm down, unfortunatly in his haste, being so angry he pushed the teacher who was in his way

quietheart

Hey BlueMonkey sounds like you're really going through it... Why does it all have to come at once. I also wanted to ask if you are in the process of having Ryan statemented. It sounds like you could do with something concrete in place for him. I know i've mentioned them before but Parent Partnership could really help you, you've got so much to worry about you could really do with someone in the know taking over the bit about Ryan's support at school. Every LEA has a parent partnership, I'd also recommend requesting a free copy of the Special Educational Needs Code of Practice. Do hope you are ok.

blue_monkey_2

:hello: Hi NPM,

I read all of your threads, great to hear from another mum and it is nice to be able to share stories. Ryan will lick people too telling them that 'rats lick'. Nice. i did kaugh about the cat story but in a way of thinking 'it was so nice to hear that other children do this too'. I can;t beleive you would get thrown off the bus for it. I sometimes wonder if I should get a t-shirt masde up for when I am out and about.

Ryan has not had dx yet, we are waiitng to see the paediatrician. Tbh I should have asked for help sooner but I just assumed it was my fault for not learning how to control him properly. I've tried everything but just assumed he was one of these kids who you could not control so have just 'dealt with it' but the older they get the harder they kick, hit and bite and the school are the ones who flagged up the problem, put him on an IEP until march (this is the date on the reveiw and it states he will get 1:1 in this time) gave him a classroom assistant, after watching him throw a massive paddy over putting his name on a piece of paper (I was outside the window) I decided it was time to get some help. 5 minutes in the doctors room and he said he was referring him. CAMHS bounced us back saying he was under 4 and could not see him (he will be 4 in middle of Fed!) so doc straightaway referred us to the paediatrician but it means it is extra time waiting (6 weeks before they bounced us!). So, nothing yet but I want to get on top of it before he starts attacking the other kids again. The school seems to be happy if he is OK and if he is having a bad time just get angry and cross with him. I agree that teachers should be taught how to deal with children that have behaviour and learning difficulties. I worry that he is going to get thrown out of school or something.

I think the problem is that is easier to turn a blind eye than to deal with the fight everything becomes. At the end of the day the whole family suffers, not just Ryan. We don't have anyone to help out, it is just us and my husband got a Wii for Xmas and thankfully it means the kids will go upstairs for half an hour each evening an play it and it gets them out of the way while I do dinner otherwise he is hanging off my legs, headbutting me and the like.

The eviction thing: My mum is my landlady, we 'look after and maintain' the house for her, it was supposed to be that when she retired she has a nest egg, this would have meant my kids would have left school and I would be able to work and then we would be able to afford somewhere. As of the moment we cannot afford to buy, I worry about renting as Ryan is so destructive, even now we are istting in a house with paper ripped off walls, holes knocked in plaster - because we was naever going to have to leave (or so we thought) it is not a problem and when he started school FT then it was my project. 6 weeks before Xmas mum came to me and said she wanted us out as she was selling, went to the council, after all we had only been on the list for 8 years, and they told us that to even be considered for housing she would have to evict us, through the courts. They want us to rent private but there has been nothing suitable and near to the school (not sure if this even matters right now, how disruptive would it be for them to change schools all the time if we kept on moving?) the only other places are £1200 a month which are big houses that we won;t get HB for. So, on 2nd Feb we have to leave, if we do not then mum can apply to the court to get us out, this means by around the end of Feb we will have nowhere, the council said they would consider us for a hostel. I am not sure what else to do. I have accepted it, my business has to close as I cannot run it from either a hostel or private rented place. Life has changed and turned upside down for us, but as people keep on reminding me, getting through this is another hurdle that we WILL cross and we will come out the other side of.

It sounds a complete cop out but I am not able to go round the estate agents and pay for credit checks we are not going to pass let alone go and see which one each has because I cannot get into town with ryan as he is. but who beleives you if you tell them? Who is going to tell the council that we are not lying about these things to get a place? if I don;t tell them they are not going to know, if I do tell them then are they going to believe me without having seen the paediatrician? I don;t know sometimes whether I am coming or going, but having just put this down on paper I think I need to tell the council why he has been referred and what daily life is like. Does anyone know whether they need to know this, what they will do, do they even give a stuff? Only Friday they told me to do something that would have resulted in me being CHUCKED OFF the housing list and meant I would have made myself and my family homeless intentionally so they would have not had to rehouse us. It just makes me so cross.

This is why I sometimes wonder if there is anything wrong with Ryan or whether I am imagining it, maybe there are so many things going on in my head it is hard to make sense of what I am doing or where I am going.

So that is it really, if you want to ask questions then please do save you reading back.

Oh yes, I forgot to add that we can't pass the Eastate and Letting Agents credit checks as hubby lost his job due to getting Industrial Asthma, he had to pake a job £14k pa less than before with more hours if he wants to make more money (overtime) as he can't get into his old field of working again (he has 'conveniently' - I call it - become allergic to household cleaners as well..... Hmmmmmm). We are waiting to see if he gets compensation for the asthma and lack of wages (he was not skilled for anything else as he had worked in Chemicals most of his working life, so he has to work unskilled but doing a skilled job through experience - it mean less ages though IYKWIM) but this will mean the compensation money would settle the debts that we was unable to pay when he lost his job but at the same time it means we don't pass the credit checks while they are not paid. The Estate and Letting Agents are happy to take the money for credit checks (£150-£200 EACH Agent and we have around 30 in this area, where do you draw the line in looking) but they have told me that the landlord does not get insurance for a tenant unless you have an A Credit Rating, which we won't have. I have told the council this until they are blue in the face but they are not listening/caring it seems. All they go on about is renting private, and also, how do you do that if your child is destroying the house around them, a house we will end up losing money over? Sometimes it just seems like everything is against you if you are honest and hardworking. I know several (shall we say scroungers) that just sit at home all day milking off the benefits Agency because work 'would not pay them enough money to make it worth their while' or because 'it is what they are owed for having worked 20 years' and won;t get a job while we try and do all we can to get through. The thing is, the people above, the drug takers, people who have just been released from prison, are the ones who take priority over the people like us, normal tax paying families. If they went in tomorrow they would be next in the queue while we are forced to wait and worry about where we will be be when the bailiffs turn up to evict us (as they will). So that is how it is. Sorry for that. Rant over I promise.

blue_monkey_2

Hi Guys,

Thank you for your lovely messages, they have helped lift my spirits. I hate burdening people with my stuff, sometimes it seems like they glaze over when i start talking so I just leave it but I hate to bottle things up else I feel things get out of control then, it is nice to have an outlet.

No, I've not had him statemented, I have read people having this done, would this not be when he goes to see the paediatrcian? this is why i had mentioned that we had not been yet and thought it would all come together then. Ah, see, tht is somethin new. I will have a read up on that, thank you.

At the moment the new intake is due on Monday so there is just 6 kids in the nursery at the moment. Even the teacher has said he has a routine after registration he has to get the train set out. Do you think he is too young for a statement, I would hate to bother them if he did not bneed it, also the teacher changes in March so maybe I should wait and speak to her to see how she will be dealing with him too. What are your thoughts. Thanks for all the hugs and support, it sounds weird but something it just takes a little hand to help you off the floor. I've gone all tearful now, I don't do tearful for anyone so you have a lot to answer for!!!!!! (Thank you) I guess it shows I should not bottle things up so much! I will have a read though though, thank you, I thought the paediatrician was what the statement was for.

Zara33

blue monkey gawd STOP!!! and i mean that in a nice way.

breathe and relax you will make yourself ill, just take things day by day.

purplewombat

Hi bm sorry to hear you're having a bad time at the moment. It sounds really unfair that he isn't getting one to one help anymore, they should have at least told you about it. Like others have said once you get the statement it should be easier to get the support.

Rovers what do the parent partnership do?

Had to laugh at the paper ripped off the walls - I know its not funny really - but it reminded me of my house. The wallpaper on the landing and all down the stairs is ripped and scribbled over and there are little handprints in paint all up the walls from when S covered himself in paint in an attempt to be Spiderman. He definately has good and bad days, lately it seems more bad than good. Yesterday was a bad day, he refused to speak to me and then sneaked lots of chocolate out of the kitchen while I was in the bath. Too much sugar makes him quite hyper and really grumpy and aggressive and he ended up kicking and nipping me and screaming at me to get out of his room when I was trying to get him to go to bed. He shut himself in with a chair behind the door and eventually fell asleep. Thankfully he's in a better mood today!

On a more positive note I called the school today and spoke with the headteacher. She's called the education guy and is going to see about a statement. We're going to have a meeting with this guy and the schools psychologist sometimes soon. Once they have the statement he should get his own TA which Im really pleased about. :T

duchy

A statement has nothing (technically) to do with a disagnosis. You can have one without the other (either way). There just needs to be a need that affects a child accessing education for a statement or action plan. Be aware not all LEAs will issue statements for all disabilities. For example my son has a statememnt from Croydon LEA and it went with him when we moved into Medway LEA but Medway don't routinely issue statements for Aspergers preferring to use Action Plus. Josh was not the only child at his school to have Aspergers-or the most seriously affected by it-but he was the only one statemented because of Medway's policy.Those other children still got support-although it appeared a statement helped get and keep the hours (from my viewpoint both as a parent and as an LSA supporting some of the other children).

Snaggles

Hi BM, I just wanted to send you a massive (((hug))), what a rough time you are having. I think you must be a pretty amazing Mum keeping your head (and your sense of humour) in the midst of all that, and one day you will look back with such pride at how you got yourself and your son through this.

Your Ryan sounds very much like my Ryan, and yes, he was always very forward in his development too, sitting, walking, talking early etc.....mind you, I am sitting here watching my 7 month old daughter 'cruising' round the furniture, so maybe some babies just develop a bit quicker than others, but they all tend to catch up in the end.

Do pester the Paediatrician for an appointment - we had an appointment, then they cancelled it and made another one for the following month, then they cancelled THAT one and tried to give us one for 3 months later. I rang up in floods of tears, and the receptionist went to have a word with them.....and we were seen that week.

blue_monkey_2

Hi Zara,

I know I should, it is hard to though, everyone just expects me to get through it all smiling when actually, I just want to get away from everything. Why does peopl ask if you are alright and then if you say 'no, not really', not give a toss when you explain?? Hmmmmm.

I sell online as well and I have got so many emails here from people moaning about this that and the other, suppliers not answering emails or sending stock, I just feel like locking myself in a room and most of me is pleased to be taking a break from the business side if I am honest, I've a lot to do to get it into storange but I am looking forward to a short break, just not looking forward to not working for the long term. OH does not really get involved with it all so everything is left onto my shoulders to deal with, kids and housing, all he does is go out to work and moan about everything I have not done to get the situation right. I did however tell my hubby that if and when he gets any of this money I am booking a holiday as of the first thing I do to get away from everything. it's probably going to be next year but some woman sprained her wrist opening a tap (LOL, yes, let's sue for anything) and got 2k. That'll do for a holiday, ha ha!! Keep Smiling