smartloobylou

i feel like i could have written that myself! I have 5 boys - my son was diagnosed with dyslexia jan 2010 when he was 8 and ASD in november 2010 when he was 9. It was only last year (4/5) that everything just seemed to start detiorating. School say they see none of the behaviours and my son admits he hides most of it at school as he doesnt want his friend to think he is 'mad.' He does do his physical repetitive tics at school, but not his verbal ones. When he's at home its like an explosion, there are tears, tantrums, stacks of OCD behaviour, tics, outbursts etc. I am exhausted after having him here solidly for the half term week. But he loves the structure of school, the routine, etc. He goes to an independant school who are hopeless with SEN but hes coping (just) due to the small class sizes. I just wanted to say you are not alone. Ive been refused DLA (asking for reconsideration but they want to contact the school who dont see the problem) so will probably have to appeal, and i have a meeting on weds after requesting a SEN from the LA. Ive been given 2 days notice of this meeting and i will be given 5 minutes to summarise why my son needs a SEN. arrggghhhh! x Louise

hi, my son had severe reflux as a baby and bad stomach cramps/diarreaoh, vomiting (sometimes bleeding) when he is highly anxious. He is dyslexic and just diagnosed at 9 with HFA. I know several kids who are dyslexic who had bad reflux as babies - is it just a coincidence?

Im afraid im not in your area, but i do know of local friends whose SEN child is funded by the LEA who could not move to the nearby town they wanted to as it would be under a different authority and they didnt want to risk losing the established funding they have. It does seem to vary widely. Good luck x

Hi dont know if you saw my post from yesterday? http://www.asd-forum.org.uk/forum/Index.php?/topic/26193-interesting-article-on-obtaining-lea-support-in-independant-schools/page__p__303299__fromsearch__1#entry303299 My son is in an independant school and im now starting out down the stauatory assessment route as i feel he would get more support in a state school - but the right state school! However im new to all this and i wonder if it will end up needing to be an independant school due to the smaller class sizes and individual attention. However after reading this, i would not hesitate to either go for funding or to request a state-funded learning support assistance. My son also has dyslexia and is very bright. A really tricky combination to accomodate. HTH, Louise x

Hi to all My 9 year olds sons ocd/rituals/repetitive sequences are getting longer and more frequent. As it seems to be a type of OCD behaviour, could it be treated with therapy and/or medication such as anti-depressants or similar? I know that you can take anti-ds for OCD as an adult and i wonder if it would have any effect? He is exhausted by all the rituals and is completely taking over daily life. Anyone child having any therapy/treatment?? x Louise

Hi i found this and wanted to share it with anyone else who currently has a child in an independant school and is being told they cannot get assistance for their child with Special Educational Needs: http://blog.isc.co.uk/2008/04/11/sen-pupil-gets-support-needed-with-help-from-the-isc/ I thought it was really interesting.

Hi, I posted last week about my sons refusal for DLA. They called me back the same day but i missed the call so phoned the number given the next day. The lady i needed to speak to was not in till tuesday but the guy who answered the phone seemed very nice, said he'd see if he could find my sons file. So i started going over the reasons given for refusal were not right as my son met both the care and mobility criteria. He seemed very sympathetic and we discussed particular details. Then he asked what school my son went to. When i told him it was an independant school his attitude completely changed. He started challenging everything i said about my son's needs and asking if he did things such as dressing etc at school then he obviously didnt have a need for assistance. I felt like sayinig come and live in my ###### house then!!! He was completely unsympathetic. He obviously didnt think my son should have the allowance no matter what as he is independantly educated (at the moment) so i just concluded the conversation with "well according to the information i have, my son is eligible for DLA and i want the lady who dealt with my case to call me back next tuesday for a reconsideration." I felt really upset after the call like he was calling me a liar and my son didnt have ASD and additional needs from a child of a similar age. Any suggestions for how to deal with the call on Tuesday. Should i complain about this persons change of attitude when i mentioned his school or am i going to come up against prejudice with everyone for a benefit that is NOT means tested. :-(

im sorry you are experiencing this, we've just had DS diagnosed at 9 years old, his behaviour rapidly deteriorated last year and when he said his head was telling him to 'do things' we were straight down the GPs. We got an immediate referral to Child Adolescent Mental Health Team, who, over 3 appts with psychologist and/or psychiatrist, immediatley diagnosed ASD (he had delayed speech so they did not classify Aspergers.) But then they discharged us from CAMHT and i've been left on my own to figure out what the hell to do. Anyway, i would consider this firstly as a health issue (mental health) and ask your GP for an immediate referral. Forget the school for the mo, they LEA will be next on your list for a SEN once you get the appropriate diagnosis. Good luck and keep us updated

i have just read thru my application - he definitely meets the mobility criteria (lower) as he must be supervised outside, could not safetly cross the road, does not understand stop/look/listen, cannot understand directions, gets upset and agitated in busy environments, chases his younger siblings into the road. There is no way i could let him go anywhere on his own, even where we have lived for 5 years. I would expect a 9 year old (and know many) who do this fine. In terms of personal care, i have calculated from my answers that he needs 171 minutes daily excluding toilet visits (i have to go each and every time with him he would not go alone he would soil himself.) but there is nowhere on the form that asks how much time you need to spend assisting with toilet visits. Last night i was up with him for 2 hours - he had a blocked nose and was extremely agitated and distressed. Because of this he had verbal and physical tics (repetition of words and movements) and it took me 2 hours to get him calmed down and back to sleep. I had to sleep with him. Isnt this more than a regular child would need at his age?? Im going to phone and ask for reconsideration. thanks and i'll let you know how it pans out.

Hi to all My 9 year old son was formally diagnosed with ASD in November 2010, and i just got around to filling out his DLA application the first week of feb. It took me 4 1/2 hours and was incredibly detailed with all his needs. They acknowledged receipt on Friday (letter arrived Sat) and today (tuesday) i got a refusal. Im gobsmacked. I thought he would definitely get lower levels of both parts, but maybe even middle level of the care part. Ive got a copy (thank God) of my application - did i do it wrong? should i appeal? does anyone know if its quite standard for them to refuse for ASD initially, what are the chances we could get it on appeal? I feel like i've failed him :-(

ive just called the local council SEN number and they said they could assess him if myself of the school requested it. They said they would look at the request at panel and then make a decision within 4 weeks if he needed to be assessed for a Statement and if they decided he did, it would then be 6 months for him to be seen. This seems a bit crappy to me. Should i have an independent report done first and then send that in with my request for assessment?? any suggestions ? thanks

wow thanks for those very specific recommendations, i will get onto them first thing tomorrow - your right i think he could be gifted with Maths but his range of needs are so diverse i dont know where to start. thanks again, Louise

Hi to all My 9 year old son was diagnosed last Friday with ASD (probably not Aspergers as his speech was delayed?) He was also diagnosed with dyslexia back in January and his school work is deteriorating. He currently attends an independant school that finishes at 13. He is getting a bit of support in English with his dyslexia but to be honest most parents with dyslexic kids end up leaving the school as it doesnt seem very clued up on helping with it. I have been told that the ASD team will not be able to help him as he is in a private school, however he would recieve their support in a state school. Is this true? The team who diagnosed him have recommended i apply for a SEN and have told me i will have to pay a private educational psychologist to start this process. Is that true? To make matters even more complicated ,my son is very bright, always scores 90+% in maths etc and i dont know how to go about addressing his needs when they are so diverse - he needs help, but in certain areas he excells. How can i help him achieve his potential which im told could be huge if nurtured correctly? He has 3 younger brothers (and 1 older) and our house is busy and chaotic - his ASD shows itself at home with emotional outbursts, obsessive/irrational behaviour, and bullying of his siblings. The school cannot believe this takes place as he's a model pupil at school - he thrives in the strutured regimented environment at school, and loves boarding (he stays one night a week) as once again things are orderly, structured etc. The pyschologist said he would probably benefit from a boarding environment in his senior school. He also suggested we move him into senior school at 11 rather than 13 which is when pupils at his current school transfer. I do not know where to start. Will a SEN help him get a place at a school that suits his needs? Will they pay for an independant boarding school if they have experience of both ASD and dyslexia? Or would i be better off persuing a state school placement as he would recieve more support? if so, how do i go about finding a state boarding school which gets the best out of bright pupils but can also deal with the dyslexia and ASD? Aaaarrrrrgggghhhhhh - head spinning, im really hoping that i'll be able to get some constructive advice and answers here. Thanks so much for your patience if you've reached the bottom of this x

Hi, Im new too! My 9 year old son was diagnosed last friday as having ASD (probably not Aspergers) by the Psychologist and Psychiatrist at the CAMHT unit. I was told there would be 5-6 assessments with different professionals but in actual fact, it took 90 mins with these 2, then they left the room to have a chat and came back saying they were both in agreement that he did have ASD. So i'm waiting for the written diagnosis. My brain is spinning hence the fact im posting at almost midnight - havent slept much since friday. Hope to get to know you