bluefish

I have as yet not been awarded mobility dla but phoned s.s for an application form for blue badge as this really would help us. Form arrived today and has little to no space to explain anything so I started to write a letter to go with form... How much info should I put?Should I ask them to contact paeditrician rather then GP as he has never seen us regarding asd? I printed off guidlines from nas for asd and blue badge, should I just attatch this or re type in my own words?any advice very welcome! Thanks

Hi, Not personally been to appeal but a friend of mine was turned down first time(not asd but a medical problem)She got an appeal form and within weeks was awarded high rate care! I am at a loss as to how dla work out who gets what. I get middle care but no mobility and phoned the dla this week to ask for a change in circumstanse form to apply and was told not to bother as they will review him in September anyway!??? emmm nine months time! Anyway good luck. If you go to job centre they can give you the name and number of someone to help with dla forms. Lin

Hi just had a letter to say e been refered to OT and Pysio this is probably a really silly question but what is OT for? and is physio for his motor skils?

Thinking of you both

Thankyou for this post it was really helpfull! I had a meeting with nursery staff today and was very honest and told them I was nervous about the meeting they were great (as always ) and said they felt it was very positive. I have written my letter to request a statment and showed it to them and together were changed a few bits(I was a little too positive )so we will all be saying the same things.. Although I know e will 100% need help I found it hard to say why and what for. due to your advice I have contacted parent partnership and am waiting for them to return my call. As I only have my mum here and she will look after e It will be great to have someone to come with me. I have done all meetings and assessments alone and often have fogotten half of what has been said by the time I get home! hv has been a wonderful support and is very involved with e. Is it normal to be a bit freaked by so many people being involved? sometimes I wish they would leave us alone! Also I still often think it's all a big mistake even though I know it's true!??? Once we get a statment is that it as far as meetings are concerned? I am ready to just get on with things..

<'> <'> <'> <'> Glad all ok

Hi, E has always gone to bed very well(as long as routine the same and same things are said in the same order) but recently he is refusing to go to bed. about a month ago he was poorly and I tucked him up in my bed with a dvd as it was only 6pm and it was cold and he had asked to go up.. BIG mistake ! now he wants to go to my bed EVERY night and watch dvd then sleep in there. I admit I have been lazy and not wanted the tantrums so have let him! I do not sleep well with him in with me and want to get him back in routine. Last night I insisted he sleep in his bed but I ended up in with him too! A tight squeeze! But he slept till.......7am!!!! I wondered if as we were so squashed maybe he felt safe? I thought today what if I swaddle him at bedtime maybe he would sleep better???? just wondered? He likes to be squeezed tight when cuddled and hates light touch. what do you think

Thank you for advice! I was getting stressed! HV has asked for a multi agency meeting at nursery so we can all discuss e and who is doing what. I am really nervous! what can I expect from this meeting? It all feels very intrusive, although of course if it helps then thats good. Paediatrician is also going to write to education to recomend he has 1to1 help. this is all just so confussing to me I just thought these things were automatic

Hi anita81 and everyone I have just sobbed and laughed through your post, All of you understand and that feels so good I cant tell you! Christmas was fine,I didn't wrap anything for e and just bought Thomas stuff for his ever growing track he enjoyed his day as did I as I did not expect anything and that made it easy for us both. We went for a walk before lunch and went through the town all the shops were closed and E went into a blind panic it was awful! at that point I thought I guess some people will never understand that my son could become so frightened by something so trivial to most! Happy New Year x

Hi, nursery are going to apply for a statement for e so he will hopefully have some help in place by September when he starts Reception. I have been advised to also write to request an assesment for statement as this will back up school request, Not sure what to put in the letter. Could anyone advise? Thanks

hi your post made me smile my little man has an obbsession with hose pipes.( he has over a thousand conecters) we do not even have a garden! winter has been tough as he can not get it that its far too cold to get hose pipe out of window to wash car etc. we have coped by going to the jet wash as a treat! feel for you and really understand x sorrry no words of wisdom

thinking of you and your family. So so sorry x

I have been in denial for so so long and had even convinced myself that the pead etc were going to tell me I had wasted their time by having e at the centre and going on the Early bird course ,I even woke one night and had drempt I had to pay money for being on the course! when I was not entitled!! Its stange when the fight for the dx is over and that was all I thought about for months, then you get it and its not what you wanted??!!!!! I dont know why I am so suprised that people just dont get it as before it affected me I am ashamed to say I knew nothing about autism and had never heard of hfa or aspergers. I just wish when you tell people they could grasp it....

Thanks Karen! feel a bit daft for feeling so low. I sobbed to a friend for the first time ever and really unloaded, it did me the world of good. I guess sometimes the pot needs to be emptied in order to cope! Lyn

e is really good on his two wheel scooter, he loves it. He still cant peddle a trike or bike. so fingers crossed

E loves ballons too, I think it is going to peoples houses that he is scared of or perhaps the children the excitment and noise? hopefully as he gets a bit older he will be able to tell me what he doesnt like. Thanks for the advice and support.I feel so much better today for having had a good cry a good moan and a good nights sleep! Lyn

Thanks so much. I have had a horrible day cant stop crying, I guess it has all caught up with me. I have been Sooo upbeat about this to everyone and have had so much going on ie Earlybird course and appointments for e that it has only just sunk in. last week e had an invite to go to a birthday party and became hysterical when I read him the invite. I took a present in to nursery for the little girl and told her mum that e was not good with parties, she said "he will be fine when he gets there" etc S many people tell me there is nothing wrong with e. I know they are trying to be kind. there seems to be such a stigma still atatched to being in any way different and I am quite sad that my dad just cant except it. Also (quick moan coming) Its Christmas and e is not interested at all! It doesnt matter as he is the most amazing little boy but today it matters to me!I thought this would be the year I heard him shout "hes been hes been!" Does that sound silly

I am so frustrated with people simply not understanding the problems e encounters on a daily basis and the way they seem to take no notice of what I say. ie e does not like parties, they respond with dont be daft all kids like parties! When I tried to explain to my father about hfa he said " I wouldnt take it too seriously you will be laughing about this in a year" I have had it with explaining! If he looked different they wouldnt question it.

can anyone tell me the difference.

Hi karen. No not really just was cross it stated all my concerns.When that is not what was said. I have calmed down today! just wish it was all more straight forward. I am worried he will not get the help at school unless we have it in black and white asap.

Really fed up and angry! e was dx in may as aspergers. We saw clinical psych last friday who said" thankfully e is at the milder end of aspergers"today I recieved a copy of clinical psych report( I was cc along with seven others I of course only gave birth to my son so why would i get a letter addressed to me!) The report was totally inacurate. It stated that I had concerns about e's social interaction bla bla. I had no concerns it was pointed out to me by Nursery and the health visiter that e was different. I have done all that they asked , e has attended assesment centre we have been to see everyone sugested. Why is it now that it looks like they want to retract dx feel sad and p****d off

How exciting that he is showing interest this year! hope you have a great day

Hi Last year e walked past his pile of presents and just turned on tv! I did not know then he was AS. I woke him up on Christmas morning and had to show him his stocking as he had no interest at all! He liked the gifts but had no clue about it being "the day" This year he still has no idea what its all about but will look at argos book (thomas page!) and say "into my christmas can I have..." My friends son NT is just three and already driving them mad about what santa will bring.

hi zapper,It was the nursery staff that noticed e was different within weeks of him starting. They contacted the health visitor who made the referal. e then attended child development centre. I think speak to health visitor or GP. Good luck. I hope you get the help and advice you need

Had a real day of it with E today, Anyway on way home from a (not so) fun day out stopped at his request at a shopping centre where he loves the fountain. Disaster! as the fountain has been covered up in order for a 12 foot Christmas tree to be housed! He could not get his head around it at all and went into a total frenzy( possibly his worst yet!) I had some bags of shopping, It was busy and he was running around screaming and flapping with me in hot pursuet! This continued for about 20mins untill we reached a stale mate on the floor. He was fighting so hard I could not pick him up so he was having this terrible terrible tantrum and was so out of control.. By this point a small crowd had started to gather obbviosly convinced I was trying to abduct this poor clearly distressed child!!!! At this point a woman strode towards us. I thought just let her say somthing..... She did. She said "those bags look heavy I will give you a hand to your car."( I had been repeating over and over to E in reduced language CAR NOW ,THEN HOME.) She took the shopping ,I managed to pick up the fighting E who was starting to calm but still kicking like a wild boar! Then I heard this noise? like a bear that had just been harpooned!it only took a second to realise it was ME! I was not just crying I was howling from the bottom of by stomach. I then started to sob "poeple staring blah blah he cant help it blah blah" Can you imagine! how embarresing! BUT it gets better I then started to laugh not a normal laugh oh no but hysterical laughter. We got to car and she practically ran off! She reallly helped us but the poor woman! now I am home its kind of funny. I have never behaved like this before and I hope I dont again but thought I would share it.