General Chat

Thank you Juliette! I agree entirely. We are the ones who know our children best. I would advise anyone to stick to their guns - no-one else is going to do it for you. I am certainly much more assertive on behalf of my son than I ever was for myself! It gets results believe me - the more of a nuisance you make of yourself, the better! Maz. XX ps congratulations to your hardworking son and good luck to him in his exams - you must be very proud

Hope you don’t mind me butting in lol but I was wondering if any one could help My 7 year old son has a few problems he is epileptic has moderate learning diff and is dysphasic. I have a meeting tomorrow with a man from the Autistic board to begin a assessment for Aspersers we have waited 5 years for this assessment (his developmental doctor has been telling us for 5 years she thinks he has Aspersers) now his epilepsy is better controlled and he is settled on his meds his neurologist has said he has a language and communication disorder and he is the one who has pushed for this assessment now. His school has him on a IEP action plus and don’t think he needs a statement of educational needs ( I disagree) and totally dismiss that the is the possibility of Aspersers. from what I read here it seams that a lot of children with aspersers seam to be gifted in certain things I have not noticed this with my son all he seams to do is get wrapped up in a certain topic ( at the moment it is the grate fire of London) and is so pre occupied with this nothing else matters. What I was wondering will the assessment team stop the assessment if the school disagree and what happens at these assessments. Sorry it is so long winded! Julia

Hi Meercat (nice name!!), I would say that panic attacks and agoraphobia are very likely in a child with asperger's. Lots of them cannot cope with things like crowds, loud noises, excessive visual stimulation etc. I would recommend that your nephew's parents talk to the Senco (special needs co-ordinator at the school) about getting him seen by the Educational Psychologist. Talk to GP/Health visitor too. Especially if he is not yet diagnosed. Maybe others may have some experience of this too. Hi Julia, As far as I know, once the assessment process has been started it will be carried through. I would think that it could only be 'cancelled' by the person who made the referral in the first place. Maybe talk to the Neurologist about your worries? It is not up to the school to diagnose, it is up to your LEA to hear all the evidence and then decide if a SEN is appropriate. We were turned down 3 or 4 times by the LEA and had to go to a tribunal in the end. Just be firm and be informed. Contact the Department for Education and Skills and get a copy of the Special Educational Needs Code of Practice - this tells schools what they are supposed to do, your rights in other words. It is quite a thick booklet, but written in plain english. Also talk to your local Parent Partnership, who should also be able to tell you about the procedures involved. Hope some of this helps! Maz. XX

Can I please ask if anyone has any experience/advice specifically for asperger's and family break-up?? Thanks. Maz. XX

Maz there is a web site I was told about called RAVIV you might have a look on it. I had a look and it is for kids with special needs like Dyspraxia/ADHD and other problems it is about a new way of helping the kids and they tell you if there is anyone in your area that deals with our kids conditions

Hi everyone, Just been reading all the messages. I have a daughter, 7 years old who has Downs syndrome. she is in mainstream scvhool in year 2, and although she is behind in her learning is still doing very well with her reading and writing. She does however have her moments with behaviour. Funnily enough she has got on really well with all her teachers since starting school, however her teacher has just gone on maternity leave and the school SENCO has taken over the class. Amazingly all i keep getting is the SENCO calling me in after school saying Emily's done this, Emily's done that. Surely if anyone should be showing her a little understanding you'd think it would be the SENCO. Anyway, sorry to rant on a bit. Has anyone used OMEGA 3 for a Down's child? I have started to use it for Emily about 2 weeks ago (i know it wouldn't start working yet) but wondered if anyone else had tried. Thanks, Sandra

Thanks Marly, had forgotten about that!

Julia, Just keep pushing for results, or you might not get the help you need. As I said, my son has Asperger's Syndrome, but if they are only looking for that and decide he hasn't got it, they might miss something else. They did that with my youngest daughter, as she is so much like her brother, and has even contemplated suicide and she is only 13. Through my work as A Special needs Assistant, I now know that she has Dyspraxia, which is something that makes the sufferer seem very clumsy & disorganised. She does also have a lot of traits that my son has, but didn't start showing signs of problems until she was 9. Each case and each child is different. That is why many children are diagnosed with Autistic Spectrum Disorder ( ASD), but many other disorders are associated and inter-linked with it.The main disorders which are more noticeable seem to affect more boys than girls. Push for a Special Needs Statement- even if your child only gets one hour a day on a one- to- one basis, it really will help. Believe me, I know. These include: Dyspraxia ADHD Asperger's Syndrome Dyslexia ODD

Just had a meeting with someone from the Autistic spectrum board and he has but my son forward for a full assessment as he thinks the is a strong need for an assessment to be carried out. Next available appointment is Nov so things are finally moving! Julia

Hang in there Julia! November is not that bad - only 6 months!!! Jamie was referred in September last year and is being seen in June - 9 months. It will come round sooner than you think! Maz. XX

Don't miss this on Channel 4, Thursday at 9pm 'Only Human' Make Me Normal A new series of thought-provoking documentaries meets four students at Spa School, one of Britain's largest state schools for autistic children. Filmed over several months, the teenagers reveal what it is like to grow up with a condition affecting more than 500,000 people in the UK.

nudge

Thankyou Maz and folks, I will have a look at that programme, it sounds very interesting :)

Hi everyone, noticed that this thread was 'live' again and I shall be watching programme tonite. I have mentioned this before(ad nauseum probably) but I belong to an online group adders.org which is for children, adults and partners of anyone with any of these autistic spectrum conditions. Please look in. There is lots of helpful info and a resident specialist to answer questions and lots and lots of support from the other mums and partners on there and a good larf sometimes. So please log in - adders.org

Jamie has the first of 3 appointments tomorrow (monday) for his assessment for Asperger's so please think of us - will keep you posted on how we get on. Maz. XX

Tomorrow morning we get Jamie's diagnosis - will let you know when I get back. Maz. XX

I am glad maz that you will find out keep me posted please

H O O R A Y !!!!!! Jamie has a mild Autistic Spectrum Disorder - the nearest match is Asperger's, although he isn't an EXACT fit, but then who IS really! So pleased that now he will not lose his statement and will continue to get the help he needs throughout his school life. Thanks for your support folks! Maz. XX

Hi everyone! Just a reminder for those of you tearing your hair out at the thought of 6 weeks with our little angels - I know I am lol - that there is always someone on GR who will listen, empathise and maybe advise. Don't forget to come on this thread and let off steam, and remember to check on here for those who need a bit of support. Happy Holidays everyone!! Maz. XX

Thank you Maz for bringing the thread up and I am glad you what is wrong with your son it is a relief when you know and yes holidays are here again and the day they broke I had John at the out of hours doctor his temp was 102 but he is back to normal runing rings round us and the hospital has stated by time Damien is a teenager he will need a laptop