Introductions

Please tell me about yourself and your family, what support you are looking for and what topics you would like to discuss

I'd be willing to discuss my son's growing up with autism and my battles with the LEA if they'd be of help to anyone. However, I would be interested in discussing young adults with autism, as I'd like to know how others like my son have coped with adulthood.

Hi Gwen
I will keep your suggestions in mind when choosing the next subjects I am at present having a battle with the LEA and am having to go to a tribunal because they are refusing to fund my 15 year old autistic son to send him to a special school even though he has a statement for a speciaal school. My eldest son with autism is 17 so is only just starting his adult life but it would be interesting to know how you and your son have coped with the transition as there is not very much support and information out there to help with the transition.
sue

Hi Sue and Gwen

What a great idea!!! I am following you for the OU carers forum. I have two very complex autistic children (my son 'officially' has 15 diagnosed disabilities and my daughter 6!) My son is 10 and my daughter is 11 - they are both high functioning but have masses of probs in masses of areas!! Like Gwen I have been through the hellish LEA system - both kids out of school for approx 3 years and had to fight through three tribunals and enter 9 high court applications until we finally got there for them to attend a specialist school for autistic children My daughter had previously 3 failed mainstream placements and my son a failed SLD placement. Even though it has been over so to speak for a year and a half now it still hurts at times as the whole process cost all of us on many levels - ie contributed to divorce, had to go BRupt due to solicitor costs etc. But I had to do it - as I am all my kiddies have and had to be their voices.

Like yourselves find I am sure, life is unpredictable, demanding and the pressure from so many areas is unrelenting. However - like i have told my kiddiwinkies I wouldn't change a thing about them - to me they are perfect just as they are.

I find myself quite isolated at times. I have no family as it was always fractured anyway but when they found out I had disabled children I was cast out! I am unable to work due to having to be on call all the while for the children - they have hospital appointments etc., and their school holidays are really different to help their hyper activity. Hence why i started an OU course last year - which I have loved. I was wondering if anybody suffers a bit from low self esteem. When it comes to the children I will fight like a lioness for them - I have all the strength to keep going and fight their corner. When it comes to me - if I have to speak for myself I am like a little wall flower in the corner!

Sorry for waffling on - it is great to see this forum up and running and I hope it will be a real success!!!!

Fleur

Hello

First a big THANK YOU for setting up this forum. I have 4 living children 2 grown up and left home and two here. My sons here are 13 and 9. My 13 year old has a multidx aspergers, tics, tourettes,adhd add(yes you can have tics and tourettes and adhd with add)and bipolar. My 9 year old has Cerebal Palsy (very mild) which mainly shows in his severe speech dispraxia..he did not even make baby noises and we had to show him through intense speech therapy. He now has the speaking age of a 3 year old. Both have poor memory recall although my 9 year old has it the worse as he also has lack of memory recall out of context, although over time he does retain that little bit more with the memory work we do. Both children are statemented and I used to home school at one point. Steven started secondary special 2 years ago and its was the best thing ever to happen to him he is of all medication right now and his social skills have improved so much he even went on hols with the school...not bad considering he was kicked out of 4 schools and two nursery's before the age of 6.

Hi Fleur

Thanks for your message and for telling us how you feel I think like a lot of carers we forget about ourselves as we spend such a lot of time thinking about others but it is vital that we do. I did a caring with confidence course which is free to carers if you go on the national extension college's website you can find details on there they send you out a series of workbooks that you can work through at your own pace and there is tutor support. I like you had low self esteem and didn't even think of myself as a carer until doing this course it was a wealth of information and it made me think about taking care of myself and has boosted my confidence. If you want any more information about it let me know. I also found some good audiobooks on itunes by Tony Wrighton "be super confident in 30 minutes" I listen to it when I need a boost of confidence and it works for me.
Anyway keep posting and I will speak to you soon

sue

Hi Linda

Thanks for your message at the moment I am fighting to get my 15 year old into a special school he has a diagnosis of childhood autism and is statemented but because we had to wait two years for a diagnosis which we got sept 09 it has been a battle with education he is only receiving about 8 hours home schooling which he finds extremely difficult as his two teachers have little knowledge of autism and he is not receiving any emotional support. I am being forced to go to tribunal for the third time as the other two we withdrew from because we were promised things by the education and they didn't follow through. Anyway I am glad that your son is thriving at his secondary school it gives me hope for my sons future.
sue

hi im steph and im in worthing on the south coast i am a single mum of three. Two my daughter and son are diagnosed with autism communication disorder, sensory processing, dylexia and add and learning difficulties. my youngest a daughter is almost 13 and my son is 14 i also have a 19 yr old who has definate sensory processing and hypertonia, and i myself have just been diagnosed with dyslexia and aspergers traits. Im not sure whether i could deal with putting myself through the full diagnostic process as its really harsh for adults, ive had an assesment with a educational and a clinical psychologist and need to take this further with a psychiatrist to finalise.The battle with my kids has taken its toll and i have fybromyalgia and severe vitamin d deficency which impacts on my memory and causes pain and fatigue amongst other things.I just wanted to say hello to everyone else on this forum and thanks to sue for setting it up.It will take me a while i think to learn to understand it so please be patient with me. i hope i can offer support along the way x

Hi Steph

Thanks for joining and introducing yourself. Feel free to pop by when you have the time and join in with the discussions.
sue

I have an awesome 4 year old son with autism. his is mild to moderate. he started speaking a little after he turned three, and his talking so much better now. he still has a hard time with it, but it is to the point where you can really understand him, which is so great for me, because I felt awful when I could not understand him. now he has a head banging problem again, and hitting himself again. he had this when he was about 1 and 2, but it went away some, but not entirely, and now it has come back full force. he throws a huge tantrum when time to transition, and I so need help in calming him down. I hate it because he keeps bruising himself. his in home therapist and I have tried to come up with different ideas, but we are lost, and I am so worried for my son. I want him to be happy, and he has problems with his younger brother who is two, who loves to hit, which we are working on! and loves to play with is brother, but my four year old, has a hard time sharing but mostly, he has a bubble he does not want you to pass, and if you get to close to him he gets really mad. can any one give me any ideas, or has any one been through the same type of experience? I am so new to this, and can not find a lot of resources to help. thanks tami faye