mum23

Hi Hedders, Did you know that you can write to your LEA and ask them to reconcider their desision, much like you can for DLA. It is best to get a copy of all the info sent in by the other parties, just give the assesment team a ring and get that sent to you swiftly. Once you have this you can write a letter (sort of counter claim) for example where the LEA IEP (Indipendent Education Pannel) say things like from the evidence we have from ....... we see that A.. could cope at school Action or school Action + etc. Explain to the IEP that the school do not even have an IEP (wow too many IEP's are n't there!) therefore how can they(LEA) judge if she can function to the best of her ability without support. Explain how if she has a bad day at school it is at home were you get the problems, again like the DLA it is NOT the condition a child has it is the difficulties your child has accessing the school curriculum on the same level as their peers that is important. It can be a good thing not to give the diagnosise if you do not have a clear positive diagnosis, just make a statment of how your child acts in various situations, school, home and out in unfailiar places, Ideally you need to give examples of things that happen in these settigs that would not happen with an other child of the same age etc. I am not saying this will lead to a positive outcome but you will never know if you do not try, this is my moto! My theory is that these people at the LEA deal with loads of cases every day, and we really need them to realise our kids are real life people not just an other case, if we can make them see how our kids feel, laugh, cry ect maybe they will be able to understand our kids and support them when and ware nessesary. Hope you get my drift Anna

Hi, I wander if it is something to do with the payment the school would have to make if they callled in the SEN ICT team! I know in our area the schools have to pay for some one to come out and do the assesment. Can you ask the LEA about this maybe they would like to know about this little money maker. Or maybe contact the SEN ICT team yourself. This does make me cross though, cos my kids school is a specialist ICT school but they have always told me I had to supply my kids laptops, yes kids all 3 have physical difficulties and proccessing problems, and it was recommended by both paed. and physio. that they need to use a laptop or have use of a scribe, but I ended up paying out for 3 note pad type laptops, cos school had NO funding for them! Ha HA now one of my kids has a Statment that says he must have access to IT equipment or a scribe at all times. Anna

Yes another one here, J. used to sleep walk lots from around 6 until he was about 10 now he seems to only have the night mares now. Oddly enough I used to sleep walk too mostly when away from home! Anna

Hi guys, I just want to tell you what my son's urolagist said to me, ' Bladder dysfunction is very common, it can ruin a childs self estem, and play havoc with the childs life, but it can be treated and should be.' I would recomend you push GP for a referal to a urolagist, don't let them (GP) tell you it's just one of those things, cos there is lots of help out there for kids with bladder problems. Anna

Hi Guys, Thanks for your input, I think I will have to have a think on this one. Hi Bid, I will not jump on you! I agree with what you say and believe it is important that teaching staff should inform the powers that be if they feel something is going on. Though in this case the HT's actions were, I feel, in retaliation for me suggesting I could pay to bring someone into the school to give the staff a quick insight into ASD, the HT was very cross with my suggestion and went on about how they know all about ASD's they have had other ASD children at the school and so on. ( I might add here, that the 3 other ASD kids that went to this school were all removed from the school by their parents!) Anyway HT was not a happy bunny with my idea, then it transpiers that she wrote to the Paed. the very next day! This letter issue was back in 2003 when son was given a tentative diagnosis of probable AS, my son was officialy diagnosed with AS in 2006 along with other medical conditions, but had been known to paed. since 2000 due to ongoing medical problems, I have only just got a copy of this letter from my sons school file, I was adviced to get a copy of his file as he is in the statmenting proccess. After reading my son's school file I am sure the difficulties my son is having at secondery school are due to a very negative input about myself from old school to new one. The sort of things that stick out as odd to me are the fact that when on his induction evenig we find the tutor had absolutly NO idea son has AS and mobility probs, even after myself and paed. had written to S. school to explain situation, when I hand a note of issues to SENCO at a latter date she exclaims "oh not another letter ha ha"! Latter my kids physiotherepist wrote to school to advice them that she thought is would be wise to supply my kids with laptop or scribe as their hand wrist shoulder and necks were becoming very unstable and to privent further detiration she felt it wise to implament some form of help. To this SENCO replies, "school has NO funds for this type of support sorry." Ok may be they do not have funds, but this is one of the biggest secondery schools in UK, so I wander. Then I and sons CAMHS OT ask for my son to be withdrawn from RE due to the anxiety it was causing him, son has morbid thoughts around death and mortality issues, school say this would be NOT be possible as they do not have staff to look after him when he is not in RE. The list goes on and on, any way back to my concerns here, what will it take for this school to take on board that I am not a bad, mad mum? Do I bring up this whole letter issue with someone in authority or should I just get on with it?! Thanks for listning. Anna

Ok big question it might take a while to explain problem. I have 3 children a 16 year old daughter with probable mild AS, twin 13 year old boys 1 with AS, the other with some ASD traits, all 3 of my kids also have other genetic conditions that affect their joints and internal stuff, and a their autonomic nervouse system. Due to these conditions it has meant that my kids have had quite a lot of time off school over the years due to on going medical problems. It took a long time to get my AS son diagnosed with AS, about six years all in all, I now beleive this has much to do with a letter from the head of my son's old school (primary) written to my son's paed. Head writes, " is it that mrs..... a very anxious and over protective mother or is it that she receives a great deal attention when the boys are ill?" Anyway she goes on to write some very daming stuff, that is quite horrid, well this was sent to the paed. whom wrote back to the school to say," I think it is very importent for all of the agencies working with...... to keep a meticulous record of any concerns, so if needs be a full chronology can be established." and thus is on son's medical records and it was in his school file (which I have just got a copy of as he is in proccess of having an SA). I believe due to this headteachers stuborness my son well son's have been victomised(sp) as AS son had no transition support to secondary school no support at all at school, even after paed. had written to head explaining my sons complex needs, infact primary school told secondary school my son had a completly diffirent condition!! Still to this day the secondery school treat me as if I am nuts! and i am sure it is to do with this letter and probably a lot more like that one. Now in year 8 the medical team that work with my son have got very cross with the school and are helping me push for a statment. My problem is I am very cross with this head of old school and beleive she needs to be given a sturn talking to by a higher being, but is it wise for me to take this further? I would be gratefull of your views. Anna

Hi there, This might be worth a try! If you go into a good habadashary(sp?) shop you should be able to find reels of curtain weights they used to be lead not sure if they are any more! they come on long cord like cotton, you can get diffrent weights but the more weight you require the larger the cord becomes. Anyway maybe you could thread this in the channel at the bottom of a long sleeved t-shirts, light weight trousers any thing really. Anna

Hi bid, Please try looking up 'Transition Protocol' on your LA web site, this is a government lead protocol, which is suposed to be in place to help you move from childrens services to adult serveces. Now not all counties are up to speed with this but they should all have some sort of pathway in place to help you find the adult services you need. From what I am begining to notice, it seems far more difficult to access this if your young adult does not have a profund learning difficulty, but this will only change if enougth folks make a big noise. You obviously have a number of medical issues going on with your son so, he might be able to access some sort of multi agency support! I know how madning this whole stuff can be all we seem to do is get passed on from one person to another, all of whom are being paid a good wage to give us the run around, I just wish some one would free up some of that money to help our kids. Good luck with GP. Anna

I found a good web page that gives an insight into OCD it is found at: emedicine.com/med/topic1654.htm Hope this might help explain some things. Anna

Hi guys, have any of you looked into OCDs my brother has OCDs along with his Aspergers, as does my son. Both have some horrid thoughts and both have exactly the same issues around wepons. I am not saying this is the problem your kids have but you might want to look into OCDs it is not just about repetative behavier their is a lot more to it, hearing voices is also a symptom of this condition and it can really control your life. Hope you find some answers soon. Anna

I would not bother to give the SENCO a copy of your letter, but I would write them a letter to inform them you have made a parental request for a SA and end it with something like 'I would like to thank you in advance for your time in filling in the LEA school infomation gathering forms'. I have found this way, you have it on file that you informed them and that you are respectful, should you ever need to take it to disability tribunual or a like it is good to be able to prove you have followed protacal and are the nice guy. Anna

Oh, well would the fact that my son had very little speech until four mean that he leans to HFA instead of AS, one of his diagnostic features for his paediatrician was his complet lack of prosody. Anna

Hello Tux, Firstly I would look at the ROMPA web site helmets cost around �60 but would be worth it I think. Ask the OT about one it is the sort of thing they can help you with. About the EEG you can walk around for the long test infact they want you to move about to help trigger an episode, that is what they want to catch on the EEG. Hope you get the padding sorted out soon. Anna

Hi, Now my first child was born with her cord around her neck and in fetal distress, journdiced and she had many gut problems and faler to thrive. She is NT with some mild AS trates. My twin boys were born a little early, 36/7 weeks both very good waits 8lbs ers, twin 1 had to be delivered by forcepts, twin 2 was a footling breach, but both boys had mighty lungs on them, no problems with oxygen deprivation at birth, but twin 2 has clear clinical AS notable to us from babyhood, twin 1 is NT with some minor AS trats like his sister, but had repeted bouts of pnuemona and had to have his T&A out due to obstructive sleep apnea when he was 3. With this in mind I think maybe ASD's are more genetic but have triggers that effect the way in which the ASD might present its self. For example a virus might trigger one gene mutation and oxygen deprivation might trigger another gene mutation, hence the diffrance in presantation within one familiy. Anna