Rabbit

Aplogies for not posting more since the summer of last year. Ive had loads of time out and decided that I was spending far too much time concentrating on ASD....its was all I was eating, sleeping and breathing and TBH it was doing my home life no good at all. Things have been going really well for us since we got J his specail school placement. His self esteem is soaring and he has now learnt to spell out his name :) Ive got a HUGE problem though and need some advice. Way back I had a massive arguement with the school doctor. She had prescribed J the wrong dosage of medication and when I pointed out her mistake she apologised and re wrote the script....only she then wrote the script for completely the wrong drug!!! OK so people can make mistakes but twice on the same day??? I wasnt rude to her but did point out that maybe she should not write prescriptions for controlled drugs unles she had the patients notes infront of her....to which she flipped and we had a really big bust up. DH has had words with her before and I know she doesnt agree with the private DX of Autism that we have. I received a letter last night from school telling me that J is to be seen by the school doctor next Friday for a regular health check.....only its the same school doctor that we have had the bust ups with!!!!! There is no way we want her to see him....the last time she saw him she totally freaked him out by telling him "mummy and daddy think you have problems and that you naughty sometimes because they think you are Autistic....do you know what Autistic means???" ...." I think there is nothing wrong with your son apart from the fact he has you wrapped around his little finger and you pamper to his little whims....he cant possibly be Autistic because all Autistic children walk around licking the surfaces around them" WTF???????? Hence DH having big shouts with her. So legally can I refuse to let her see him??? J is seen by our own GP who fully supports the private DX we have and the SID/diet programme we are following. Any advice would be greatfully received. Thanks. Rabbit

J starts back to school in September after having a year off and being home educated. We received confirmation of his school transport this morning. He is being collected at 8.20am from home in a taxi which he will share with a friends daughter who also attends the special school. He will arrive back home at 4pm. Our eldest is starting at the secondary school in Sept and he too will be using transport arranged by the LEA. No more school runs for me anymore.....what am I going to do with myself all day....Im feeling very redundant

Phernergan sends J crazy.....its like having a mini Taz running from room to room. Our nutritionalist told us that the high sugar content was to blame for the hyper behaviour! However it sends our oldest into a deep restful sleep that lasts for hours and hours....just goes to show no two kids are ever the same.

Does your daughter see a SALT? I would have thought with such difficulties with talking whilst at school that the teacher would have requested that your daughter be seen asap by a SALT. You can self refer yourself to see a Speech and Language Therapist. Ask the school for the name of your school nurse, contact her and tell her you wish for your daughter to be referred to a SALT due to her significant speech and language difficulties. I know how worrying it can be. my son was non verbal from the age of 2yrs and 7 months until he reached 7. He is nearly 10 now and we still have non verbal days....Im pretty good at Charades, as miming is his only way of communicating with us when he chooses to stop talking. What other signs does your daughter show for you to suspect ASD?

carerquie....yep we have met before in the good old days! I still pop in to have a peep at everyones news....miss some of the old guys lots but am in contact with quite a few via email, msn etc. Mossgrove....we get higher rate for personal care due to J's nightime antics.....I would rather have sleep instead of a few extra pennies!

Mossgrove....the clocks sadly were correct....full moon on friday and my little man isnt sleeping well I finally settled him at 4.39am and crawled into my bed, only to be woken at 6.30am by the little tike who was full of energy and raring to go!!!!

I've been home educating my son who is 9 and has ASD for the past year. I didnt want to do it but was forced into being a home educator by my LEA. I refused to remove my sons name from the school register because I knew that once I did that, then his educational needs would become my responsibility and as far as I was concerned my son was entitled to be educated within a suitable educational setting and it was the LEA's duty to provide such a setting.....they couldnt do that....so I pulled him from school.....got the GP to sign him off from school on medical grounds and then managed to secure a Link Education teacher paid for by the LEA to come to our home three mornings a week to teach him. Finally after many long and heated battles (and I dread to think how much money we lined our solicitors pocket with) the LEA awarded J a placement at the local Special School.....so no more home educating for me from Sept I loved every minute I spent watching J's self esteem improve whilst he was being home educated....BUT it was blooming hard work. I never had a minute to myself during the day and the days just seemed to be so long!!! I would suggest that you look at this site to help you with your decission to home educate http://www.education-otherwise.org/ and I wish you all the luck in the world if you decide to go ahead.....it really was most satisfying and so very rewarding. HTH Rabbit

Well Guys....first my apologies for being away so long You know how things go.....J's Dx really did knock us back and we took some time out as a family to come to terms with it. We have spent the last few months having a fantastic home teacher coming out to the house three mornings a week to teach J in our home. She became a good friend to us all eventually.....J took some persuading and after a few battles to retrive him from under the bed, he finally settled down to actually doing some school work. It was a sad day in this house when we said our goodbyes to the teacher, but we have seen her since as "friends"...which is so much nicer. J starts school in September....we won our battles and got him his placement at the Special School....we both had our doubts that it wasnt the right place but after some integration afternoons he soon settled and the teachers all reassured us that J needed to be in the special school and that his needs would be best met there. We've had a few ups and downs along the way but on the whole things have been generally OK....well as OK as they can be when your living your life controlled by a nine year old with ASD!!!!! Still having the big problems with my "Ray of Sunshine" not sleeping....sleep whats that????? Melatonin sends him hyper....have tried every herbal potion going....thinking we may have to resort to my hubbys ideas....either move house and not tell J or I sleep in the caravan at the bottom of the garden at the weekends so hubby can do the night patrol. So thats it basically.....Thanks to those who have mailed me direct and passed on your good wishes.....I hope to be around more than I have been. Look forward to catching up with you all. Rabbit

Thanks everyone. Just wish it didnt hurt so ###### much and the thousand "what if's" that are flying around my head would disappear!!!!!! The dx of Autism has really hit my hubby hard. Silly old me suspected that J would not get a dx of HFA or Aspergers because he has such a low IQ and language delay......how I wished I had sat and talked about my thoughts with my dear old man before the CP came......then I could have prepared him for the dx a little better. There is just one sentence that the CP said that is really getting to my hubby....." Prepare yourselves for the fact that it is highly unlikely that J will go on to live an independent adult life.....he is unlikely to even want to drive a car....so driving will not be a big issue for him." Poor old J....cars are his obsession....hubby has recently bought an old car and he and J are going to rev it up together. The garage is becoming a workshop and the men in my life are slowly pulling the car to pieces....J has pictures of how he wants it to look....neon lights are a must!!!! All J talks about is when Dad and he have finished the car he will be able to drive it....because he will be bigger then. In my dreams my wee man will get married....he will have a lovely family....he will be happy.....why does it hurt so much?....I wish we hadnt had the dx now.

CP came, spent the day with us.....J had major meltdowns.....and to cut a very long and emotional day into a few words.....J has been dx with Autism. A bit shocked because until recently we had always thought it to be Aspergers.....but J has a SALT delay and a very low IQ....so the dx couldnt even be HFA.....CP was excellent and picked up on things hubby and I hadnt....he certainly knew his stuff, but he is reported to be highly regarded and one professional I spoke to said she thought he was quite possibly the best out there. Very emotional and if you look at the time of posting this you can see I cant sleep....head is buzzing with a thousand and one questions.....but will I ever find the answers????? I doubt it!!!!! So what next.....sort out J's schooling for once and all. CP is going to make some very strong recommendations in his report.....so will bombard the LEA with those as and when the report arrives. Funnily enough this morning we received a letter from the horrible NHS Paed.....he wants to see me on tuesday of next week.....MP has written to him....so I expect he will be seeing me out of duty.....just to tell me that J cant possibly have any form of ASD because he doesnt lick the windows!!!!ARGHHHHHHHHH the bloke is a jerk.....I'll sit and listen to his ignorrance....once the report from CP is written up then I will gain the greatest satisfaction in shoving it up his ar5e!!!!!!!!!!

Hi Sue B....just wondering if your MY Sue B?????????? If you are fancy seeing you here Rabbit

Things really have moved on in leaps and bounds for us over the past few days, I can hardly keep up with it myself!!! A few weeks ago I went to see our MP.....I had been told he was pretty useless so didnt really hold out much hope that he would do anything for us. WRONG!!!!!! I received a letter from the Director of Education.....all 7 pages long!!!!! Basically it goes on about how alarmed the director was to hear of the experiences J had encountered within his old mainstream school. The Head from Hell has been "missing" from school for the past few weeks....it now appears he will not be returning!!!!! The LEA have failed miserably to deal with J's home tuition, placement at special school and statementing procedure. They hold their hands up to not being reponsible in providing their duty of care....... And from after the Easter break J can go to the special school as and when he feels comfortable. I am to attend a meeting with the school head to devise a programme of dates to integrate J back in to school on a full time basis. The Director apologise for all the distress this has caused us as a family and has asked if I would be prepared to meet with him to discuss the areas where the sytem is failing children with ASD asap. Our solicitor is in a flap because the letter is going to provide us with excellent evidence against the LEA when we take them to the cleaners for disability discrimination!!!!!!! They have admitted in their own words that they have failed to provide an education for our son....how very foolish of Mr Director.....

We are in EXACTLY the same position. I am so worried that the school appears to be fine to us but how will J settle there? Have you asked if your son can go for a few sessions to see how he gets on? We are currently home educating J because he could not cope in mainstream even with support. J goes to his special school on Friday afternoons for 2 hours....its social time so the kids are free to move around the classroom and generally mix with one another. J really enjoys his sessions....maybe you could try a few before the end of school year so at least your son has a chance to meet up with some of his class mates. I worry because J is higher functioning than the rest of the children in the class....even though he has learning difficulties and is currently working 4 years behind his chronological age. His understanding is OKish....he cant read or write YET and has no concept of time, math etc. Im sure he will be fine but I still have an uneasy feeling that it is the right place for him. The school is perfect in everyway....the teacher fantastic....I fought the LEA to get a placement at the school for J....and now Im unsure!!!!!! Why? I dont know!!!!!!!!

I had a meeting yesterday with the LEA officer, EWO and a ASD Advisory Teacher. They all came to the house. 15 mins before their arrival J went into meltdown because he couldnt find a vask????? I spent 20 mins trying to calm nim down and then worked out a vask is a flask!!!!!He wanted to make a cup of drinking chocolate and put it in a flask?????Why I dont know but thats what we did.... J disappeared upstairs, refusing to acknowledge the visitors. 15 mins into the talk, J came back down into the living room....shouted at the ladies to take off their shoes....the proceeded to vacumm the longe carpet to get rid of their germs!!!!! I just sat and let him carry on!!!! Each and everytime we have seen any professional it has been on their ground....and each time J has been withdrawn and quiet as a mouse....I let them see J how he really is. Best comment of the day....."has anyone ever suggested Aspergers to you!!!!!!" Ive only been trying to get him dx for the past 4 years!!!!!! Any way the meeting went well.....home tuition starts after Easter....they expected me to pop J into a taxi and send him off to the town centre unaccompanied to attend day school 3 times a week.....I think not!!!! He is 9 and no way would I let him go unaccompanied with a taxi driver I dont know......there is no way J would go without me anyway. The building they use for day school is right in the centre of our town. You can not drive up to the building and the nearest car park is a 5 minute walk.....J is a runner....so I expressed my concern that what would happen should he run off....far to dangerous for him to be foot loose in the town centre. The building itself is not secure so finally it was agreed taht J would be receive link ed at home. Then we moved on to his placement at special school......still a tad hazy about whta is happening.....they agree J is to HF for special school but that he can not cope in mainstream, even with full time support. They are suggesting a 50/50 mix....but we will cross that bridge in a couple of months time. EWO is however goping to ask the special school if they will have J for two morning sessions a week....so he will be geting educational input everyday. So finally after 6 months of battling to get J his link ed at home....we have it.....so much for the DofES stating that link should be provided after 15 consecutive days away from school....ha ha ha...that laughter is sarcasm if you didnt realise!!!!! Onwards and upwards....September is not so far away now....I think I will just give up my battle to get J into the special school before the end of the school year....he is sooooo happy at the moment and the summer is coming.....long lazy days at the beach will be fun.....in an educational way of course!!!!!

Believe me I know!!!!!! When he is fast asleep I sneak in and take a peep at him. He is so restful and looks so calm and content snuggled up in his tent!!! Yes I said tent....thats where he sleeps....better than the cardboard box he slept in for a while!!!! While I stand and look at him.....I feel so much sadness for him....sadness that he isnt being given all the oppurtunities he is entitled to.....that is what fires my determination even more.....I want him to be happy and content when he is awake. The whole system sucks and I honestly can not see it getting any better.....