Aspergers/ASD support thread

parapusher

Hello Happy Girl

I don't post very often, but I just wanted to tell you that I would be exactly the same. I'm a 50 yr old Aspie, diagnosed 9 years ago. I find I just have to make myself do things like start a new job. I can't give much advice, as I know I wouldn't be able to think "everything will be ok" or something like that. I would say to myself " If I don't like it, I will stick it for 6 months, then get another job." Actually the job I have now, I'm 'sticking' for at least 3 months as after that my son comes home from Residential college and if nothing else, I can claim carer's allowance again.

AlwaysHappy

Morning all, I have been a long time lurker on this thread so hope you don't mind me joining in and asking a question about schooling. In a nutshell my son has been at a private school since 6 and is now 12. At 7 he was diagnosed with aspergers and dyspraxia and has been working a year behind year group since Y2. 3 years ago we tried for a statement and got declined and I had a bit of a breakdown. Since then I have been diagnosed with ME and this is worsened with stress!!!!! We have tried again for a statement - panel hearing in a couple of days but have already had it suggested that they are looking at a unit attached to main stream school. There are two in our area - one brilliant (and full), and a few miles away, and the other has places - and has a really bad reputation - I have heard of children having bones broken, being knocked out - literally by other children and getting called disgusting names and I could go on. Children have haemorraged out to the better unit or sadly had to move on to referral units as they have been so badly psychologically damaged. They have appointed a new head of special unit and are insisting that I will have to go there. My son is extremely vulnerable and one of the reasons we have continued to pay school fees for him has to been to protect him, but sadly, he could also do with other resources which aren't available to him without a statement. If I name the full unit in section 4, fail (99.99999% sure on this as not only no places but apparently LEA would have to provide transport for him), how could I then go on to argue against the other place - even the good unit says the LEA will say they are both the same which they aren't and I can't argue a case on hearsay. The other thing is the LEA have said they realised there had been problems and have dealt with them BUT from my perspective change takes time to instill, particularly if the other children have been in a poor mind set and allowed to bully these vulnerable children, change like this doesn't happen over night, and the overall head teacher has remained the same - I can't sleep and have no idea what to do. I now don't even know whether to stay where we are as my child is happy. Any advice for a very fraught person?

Savvy_Sue

It may be worth contacting IPSEA, for starters. They may be able to help you construct an argument for the better unit, or against the poorer one.

A less encouraging thought is that if you leave your child where he is, I'm not sure that a statement will be of much use anyway, because AFAIK the help it brings is only available within the state education system. If extra help is needed within the private system, you could be charged extra for it.

But re-reading your thread maybe you're saying that he'll only move if he gets the statement.

However, if your son is happy where he is, AND he is getting an appropriate education with 'enough' help, AND you can afford it, I'd be tempted not to move him.

Happy_Girl_2

Thank you for your replies. This is the first time I've changed jobs since I have been aware of being an Aspie, and I think you are correct that I am maybe magnifying this due to being so comfortable before

Usually when I change jobs, I am very glad to be leaving, and excited about the new role. I think the difference this time is that I hadn't yet reached the point where I felt happy to be leaving my old job and it sort of feels like I have been wrenched away from what I was doing too early? Even though it is of my own doing, inside I feel a bit like I was happily working away, and then I'm told, come with me, you're not going to be working here anymore, and you will be working different days for a different company forever. Does that make sense?

But yes also, with this new awareness, it will be easier for me to tell them what I need to be more productive, like allowing me to finish what I am doing before starting a new task.

Something else that I have realised is different about me and will have to be worked around is that in the old job I worked 5 hours a day, so I could just work until I finished. The new job is all day, but I find lunch breaks really distracting. Is that an Aspie thing too? I would much rather work 7 hours straight and go home earlier, then have this forced break in the middle of the day, which I then need time after to settle back into work again. Other people I've worked with are in and out for fag breaks, making cups of tea, chatting to friends, all day. I feel that if I spend 5 minutes chatting, I have to work on 5 minutes longer! God it's hard work being an Aspie eh lol?! I'm 40 and have been working for 20+ years, so it isn't naivety that I might grow out of with experience either!

One positive thing from the job change though, is that Sundays for me are always tainted by the thought that tomorrow I have to get up for work 5 more days before another lie in. I won't be working Monday's anymore, so I feel I can enjoy yhe benefit of whole weekends now lol

AlwaysHappy

Thanks for your response Savvy Sue, I have spoken with Ipsea in the past, but now that the lea are indicating that his needs are greater ie needs to go to a specialist unit, like you say, I can only access this by leaving the safety of the private system. I am in a total quandry, as I say he is happy where he is - which is a huge thing in itself, BUT without a statement it leaves him a little bit high and dry in later life as well.

Indie_Kid

Why was he refused a statement?

What do his current school think? I mean, do they believe he's coping as well as he can? or do they believe that he would be better elsewhere?

AlwaysHappy

sh1305 wrote: »

Why was he refused a statement?

What do his current school think? I mean, do they believe he's coping as well as he can? or do they believe that he would be better elsewhere?

Three years ago he was refused a statement, he is a really good reader (though can't understand what he has read), we appealed and failed, though the ed psych who has assessed him this time has said that on hindsight they made a mistake - he should have had a statement.
Where he is - we pay for support for 3 hours a day, but he is missing out on the speech and language therapy etc, and whilst I keep getting promised a social skills group for example, this as yet does not appear to have materialised. I am trying to balance his happiness short term (obviously very important, one of the reasons we have paid fees thus far has been to protect him), but not sure if it is the correct view for the long term, I can't imagine him living independently and without lea support now unlikely to access care later.
I can hardly think straight.

starnight_2

So todays the day we go see Child and Family team at the hospital, for some reason I'm getting really nervous. I think it's also bcause I've been feeling really low at the minute. Sometimes he seems to be gong backwards, but considering we haven't had any support for nearly 5 months now I suppose it's not that surprising.

I keep getting myself worked up that am I doing the right thing by DS. Also REALLY in need of a hug form him but know realistically it's not going to happen, just really wish it would.

Will let you all know how it goes today, though not really expecting much, just more questions then fence-sitting.
xx

AlwaysHappy

Hope the meeting with the child and family team went well for you starnight, and that hopefully it can open doors to some more support for you. Its really frustrating isn't it.

starnight_2

Extremely, she basically said she doens't understand why the other doc won't give 100% diagnosis so going to phone and find out. Also going to get in tougch with school to either go out and talk to teach or observe DS. BUT there is only a week of school left so if she can't do it within that time, then it will have to wait til at least October, so againa it's a wait and see. But she seemed more adamant that they should get things moving along for us.

*shrugs*