Aspergers Syndrome

[vickey]

I am new at this first time, please bear with me. I have two boys one (7) diagnosed with asd and the other (9) in the process of seeing a psychologist who is not very willing to give diagnosis. I am looking for help as signs of asd in eldest is now extreme, violence, ocd and panic attacks.

Anyone have any similar problems or any advice would be gratly appreciated.

[Jimjams]

SOunds like you need a diagnosis. Is there anyway you could afford to go private? There are several options if you can. I would recommend BIBIC as a possibility. They provide bursaries if you can't afford the assessment in return for fundraising. They don't diagnose as such but their reports have helped many high functioning children go on to get a diagnosis. They would also provide practical help with the difficult behaviours.

website: www.bibic.org.uk/

[Davros]

Don't want to teach my dgm to suck eggs, but have you looked at the NAS website? here There is a section describing ASD and AS. It might be a good start. Although the NAS is unpopular in some quarters of the ASD community, it has vastly improved over the last few years. It was someone at the NAS who gave us our first piece of very good advice so its always worth a shot. If there's a local branch to you they are generally very good, run by parents and full of support and information.

[Jimjams]

dgm good one! Very tactful description of the NAS Davros

[vickey]

Thanks for all your replies, my ds is seeing a doc and we are being seen on a regular basis as he is on anti depressants. I just find it sad that my 9 yr is on anti d's. I have thought about going to my local support group but don't know whether i have avoided them as i dont want to admit i cant cope. i have been on the nas website when my youngest was diagnosed, and i went on yesterday. I have the tony attwood books on aspergers syndrome. I am glad that school is back tomorrow maybe i will be able to concentrate a bit better. Just had an incident at home eldest son has thrown the remote control at the little one because he was in front of tv. Communication is just not happening in my house.

[mrsforgetful]

MARYZ- you are SOOOOO right about the diagnosis 'proving' that it is a condition not a 'parental/discipline' issue!
And VICKEY...I'm going through the reverse (my eldest is 9 and has ASPERGERS and i believe my middle one (7yrs) has it too.) I feel frustrated and angry that no-ones is listening to me. I am lucky that i have a mental health social worker who is helping me with this problem, as I suffer from depression myself and am on antidepressants (for life if it means i treat my boys better than my mum did -she never admited her mantal illness-so treated me terrible) so i understaand your concerns for medicating your son- however our oldest is prescribed CONCERTA (long acting ritalin type drug) as he also has ADHD and we meet a lot of critism about it- the worst bit is that as a parent you have to make the choice - whereas as an adult you make your mind up- a child of 9 doesn't have the luxury- however in the case of my son- he has been known to ask for his medicine if we forget as he can tell how different he feels without it- and the beauty of his drug is that he can skip doses and gets an 'immediate' result when he takes it - whereas you can't do that with antidepressants as if i don't take mine properly it can affect me badly for days and then if i start taking them well again it takes a week or so for the effect to kick in.
Depression also features in my eldests AS and is fairly mild-we call it his 'flat' days as this is when his voice is more 'monotone' than usual.he will walk around with his right hand above his brow whenever he has to talk- and if 'pushed' will cry- he has hardly ever cried since he learnt to crawl- so this really shows us when he is depressed.
Depression is a tough one as an adult but to be the parent of a child with it i'm sure is tougher as when i feel down i wear 'blinkers' so to speak but for you ....when he's depressed you just see his pain
hope this all makes sense!

[Jimjams]

vickey- it's worth going to the support group because you'll find everyone is struggling to cope! People there will understand how tough it is.

[viv2003]

Vickey , never worry about feeling that you cant cope we wouldnt be human if we didnt all feel that way at times. When my son was first diagnosed i was adamant i couldnt cope or handle it and the thought of school tomorrow for him makes me think so again as he hates it and thats where all his worst traits come out. I am already dreading the school runs,the performance of getting him in the classroom at all and getting home and dreading the phone ringing in case its the Head about him again. BUT on a more positive side weve had a really good summer and there have been improvements. Weve followed advice from a private prof. and ive got ideas from books, some of which worked(and some havent!)but i have to remind myself that however little he has improved its better than none.The worse thing i find is the looks from other parents especially outside the school, i know they think hes just naughty or im a useless parent and its hard but i try to rise above it and i wont give them a long explanation of his problems because it annoys me that they take this view without knowing him.Anyway i`ve harped on enough but just to say that everyone thinks they cant cope but we do because our kids are so important to us and if we feel like this we can only imagine how they must feel in a very confusing world.Go to the support group if its not for you,you dont have to go again. Good luck.

[viv2003]

Vickey , never worry about feeling that you cant cope we wouldnt be human if we didnt all feel that way at times. When my son was first diagnosed i was adamant i couldnt cope or handle it and the thought of school tomorrow for him makes me think so again as he hates it and thats where all his worst traits come out. I am already dreading the school runs,the performance of getting him in the classroom at all and getting home and dreading the phone ringing in case its the Head about him again. BUT on a more positive side weve had a really good summer and there have been improvements. Weve followed advice from a private prof. and ive got ideas from books, some of which worked(and some havent!)but i have to remind myself that however little he has improved its better than none.The worse thing i find is the looks from other parents especially outside the school, i know they think hes just naughty or im a useless parent and its hard but i try to rise above it and i wont give them a long explanation of his problems because it annoys me that they take this view without knowing him.Anyway i`ve harped on enough but just to say that everyone thinks they cant cope but we do because our kids are so important to us and if we feel like this we can only imagine how they must feel in a very confusing world.Go to the support group if its not for you,you dont have to go again. Good luck.

[Jimjams]

viv- don't know if its a possibility in your circumstances but have you ever considered home education? There's a very good book available- "Home educating our autistic spectrum children- paths are made for walking" ed Terri Dowty and kitt cowlishaw.

[Davros]

viv - things sound tough for your son at school. Does he get any extra support? It sounds like you could all really do with more support, or better support if he already has it. Hope the new term turns out to be better than you're expecting, let us know how it goes.

[Jimjams]

or take davros' advice- less extreme

Does your son have a statement?

[Davros]

maryz, I don't think your dh's reason for not home edding make sense as it could be the very thing that prepares your son for the world later on. However, I'm not saying at all that I think you should do it, that its easy or that it is necessarily right for your child, I just think that reason doesn't make sense to me. Has anyone looked at the Education Otherwise website? That is the charity that supports home edders, it might be worth a look. We basically home edded my son but only from the ages of 2.5-6 and with LEA funding and lots of support of a whole community doing the same. The program was run by a professional with proper structure, training etc so it was not my job to make up as I went along. I must say there were times when I really hated it and it was very stressful. There's no way I could have worked and made a good job of it either. I do think it was the BEST thing we could have done for our son though as he got intensive 1:1 teaching with people he loved. I've also made some wonderful friends and had a lot of fun out of the whole thing. I don't know if its easier or more difficult when a child is older, maybe others can tell us?

[Jimjams]

I think it depends on the child. If my son was AS I think I would home ed him. If not straight away defintely form seconday age. Like you Davros I feel the only way I could home ed him at the moment would be to do a home program and I can't face the battle with the LEA (I really don't think they would fund it) and can't afford it any other way. Gradually we are introducing more people (such as the SALT) though so I may well try and flexi school- and run something like growing minds on the side iyswim.

This site www.he-special.org.uk/ has a lot of info, and the email list is very friendly, supportive and full of parents of AS and autistic children.

I personally think that home ed can provide a much better preperation for life for AS and autistic kids. Like Davros doesn't mean I think everyone should home-ed just that I don't believe that argument to be valid.

[Davros]

I afree that secondary level is going to be tough and resources, energy for home edding could best be saved for then. Flexi schooling should be much more available IMHO. I think it would be the answer for a lot of people, even if it just offers a more gradual transition with some back up if things go wrong. I also believe that a lot of our kids are better off in a class a year or possibly two younger than them. Suggest this and the education people go blue in the face!

[Jimjams]

maryz- did you know that according to government guidelines an "ASD friendly LEA" should be willing to help in the running and implementation of a home programme. Not many ASD friendly LEA's out there!

Your school sounds pretty good anyway. I think flexibility is the key really.

[Bugs]

Vickey - Am new to site but have austic cousin and my mother teaches a wide range of austic kids. Have you tried diet control? try to get referal thru g.p to dietican (excuse spelling it's late)will speak to my mum as she's very hot on subject and has seen it work - may be able to recc' some sites/books

[Davros]

You'd be surprised how many LEAs are funding home progs, they just don't like to admit it and prefer to keep it very quiet. There's a list available somewhere, I'll see if I can find it. Home progs are one of the reasons that more LEAs are setting up their own provision, my own LEA had nothing when we started and so little option but to fund. I suppose its a good side effect of home progs that these new schools/units are being set up but there still aren't enough places.....

[Jimjams]

Depends on how good the units are though davros. We have an autism unit (KS1 only) attached to a mainstream primary but its crap. Non-verbal kids are given salt with AS kids. Group teaching to non verbal kids and tantrums result in a video and lots of toy playing to calm the children down (tantrums are confused with meltdowns iyswim).

Trouble is if we tried to argue there was suitable provision- they would say there was- this unit.

Bet my LEA isn't on the list (actually I know it isn't as I spoke to an ABA tutor a while ago and she said there aren't any families doing ABA programmes down here). I do know someone form the next LEA doing growing minds but she's self funded (sold their house- and went to Australia for a year).

Until LEA's work out the non-verbal children in particular and a lot of autistic children in general need one to one provision will remain crap. Can't be done on the cheap.

Whoops on my soapbox again.

[viv2003]

Hi everyone, well the first day back wasnt too bad....hopefully some of the work ive been doing with him is starting to pay off.Apparently yesterday one of the kids told him he was dumb and angry, normally ds would have lashed out but instead he replied " youre the dumb one as you dont even know what Asperger Syndrome is" and calmly walked away!Ds does have a Special Needs statement but before summer hols was told they couldnt afford any one to one help with him.Unfortunately his teacher for literacy and numeracy doesnt like him i always remember her saying that "Jack says what he thinks and that doesnt endear him to us".So i told her what i think as well!On the whole the teachers are handling it better since diagnosis but i`ve decided to give it until half term and then review it.I did home ed for a year and half until ds was 6 then he asked to go to school.I would do it again but dh thinks it wouldnt help him socially etc etc.Will most definetly give it serious thought at secondary sch age if i dont do it before. Its so tough knowing what to do for the best isnt it? Changing the subject a little does anyone know anything about entitlement to disability allowance?Would we be entitled to it?Not that i really want to have to claim it but the thought arose after we just bought ds a laptop to help him. Also going back to home ed i have a younger daughter at school - and even though she loves school not sure how she would react,does anyone have kids at school and home?

[Jimjams]

do the school know anything at all about AS??? Fancy saying "jack says what he thinks" errrr yes- he has Aspergers!

Does his statement say anything about one-to-one? If it does the school have to provide it- they don't have any choice. If it doesn't it would be worth getting one-to-one specified at the annual review- or you can request a review at any time.

Apply for DLA. I get higher rate for my ASD son. For AS I think middle or lower is usual, but I do know plenty of people who get it.

I do know lots of people who home ed one with the other child at school- so it can work.

[mrsforgetful]

VIV- my son has aspergers and adhd. he is recieving DLA ammounting to £53 also our child tax credit has increased by £150 due to having a child with a disability-Great website which helped-and i'm sure helped me get the maximum we were entitled to-was www.bhas.org.uk- anyone in the uk can use it.Also if you are awarded the 'middle rate ' care commponent and you earn less than £70 a week AND you care (watch out for)for the child at least 35 hours a week (which is easy if they live with you...even if they are at school fulltime...)then you are ENTITLED to claim an additional £43 CARE ALLOWANCE.
tip to you is to telephone to order the forms- don't do it online-this way they will backdate it to the date you requested the forms....ammounts to about 8 weeks of allowance by the time they finalise and pay the first payment.
also when you get the forms they are in 2 parts- complete part 1 and send it straight back- this makes sure you get that backdated money- then you have 6 weeks to complete part 2- sounds along time but it is complex
Also final tip (as loads have said on this site IMAGINE YOUR WORST DAY.... IMAGINE EVERY POSSIBILE DIFFICULTY THAT YOUR CHILD HAS HAPPENING ALL AT ONCE ALL ON THE SAME DAY!
Don't worry about presentation (i added odd notes here and there all over the place and added 'Day in the life of thomas' which was a typical 'minute by minute' acct of what help he needs- and NEVER feel something is TOO trivial...keep focussed on the idea of whether it t is a behaviour that another child of that age would do and then look at the time it takes you to clear up messes/intervene/assist/explain/calm down etc ....and you soon stop seeing anything as trivial!!!!I have found increased confidence in my abilities since filling in the form as it made me realise just how much care even my verbal/sociable/independant child needs and made me appreciate how lucky i am in relation to the scale of dissabilities as opposed to feeling 'less than' the parents of a 'normal' children...i know now i have had to develop skills that they don't have!!!
GOOD LUCK!