Anneuk

Hi all, as some of you knwo I have a 12 yr old dx Aspergers and have been observing my 9 yr old as she has had some different problems. I now suspect from doing lots of reading that my 9yr old may have dyspraxia and or dyslexia. Her paed said she does have some neuro defficiencies and she has lots of mobility problems as she is very tight from the hips down which has totally thrown her posture. She has to attend physio for regular plasters on her legs to stretch the tendons etc. She has now been discharged from the paed. Her attention span is very short about 5 minutes at a push and she is very clumsy and forgetful. her teacher said well she does have some concerns but to be honest, their are a few children in the class worse than her so she doesn't seem so bad (what???) Anyway, the reason I am droning on and on here, is that I fought for so long to get my daughter diagnosed with Aspergers and am still fighting the education system, and I just feel so daunted by taking on another fight. I am wondering if any of you have children here with dyspraxia or dyslexia and if so who helped with diagnosis. Also does anyone knoe of a Private Psychologist in the South East Wales area who is expert at these conditions. I also have a chronic health problem and know that if I am going to get the help she requires, i am going to have to jump in where I am likely to get help and not run about the houses too much like I did with my other daughter. I am hoping that someone can help me, Please?? Anne

To all those who offer support here, and those who have been banging their heads on a brick wall trying to get DLA, keep at it. I kept putting it off as the forms were just too daunting, However 4 months ago after a puch from the paed I took the plunge and filled out the forms online, I did it in conjunction with the advice from the autistic society. My daughter age 12 has been awarded higher rate care and lower rate mobility for two years, it is much better than we hoped for, and makes a huge difference to our income and has allowed us to pay the payments on a new second hand car. The back payments (three months worth came in very handy for christmas too) For anyone not going for it and if you are on other benefits, it does impact these too, and you get extra payments if you are on income support and child tax credit. One thing that is sad though is the people who helped me fill out the form told me you really have to not lie but treat the worse day as if it is every day to get a sucessful claim, I felt very very disloyal doing this, as Mydaughter tries so hard. Keep on going Anne

Hi all, I have been speaking to someone from IPSEA for a good few months now, and it turns out that my daughter (12 diagnosed with AS in 04) has had very few of the assessments she should have done at the time of diagnosis and has had no follow up since, as such I am struggling to get her help in school, this is doubly difficulty as she is very bright and her problems are stress related in school and not learning related. I have been told I can get the appropriate assessments carried out under the legal aid scheme and as such am seeing a specialist solicitor tomorrow. I have my daughters school record, diagnosis and the few assessments she has had, but can anyone advise me as to what I should be asking for, what sort of testing etc, I am told she should have had some testing for her supposed, pragmatic language disorder (?not sure if I have this right) All help before tomorrow would be very gratefully appreciated. Anne

I feel like I am getting a bit further along the road now after speaking yesterday to a chap from IPSEE. He has explained to us that we can go down the legal route to get out 12 yr old AS daughter and 8 yr old undiagnosed duaghter fully assessed by all members of the appropriate teams. And apparently if we go down this route we will be able to choose who they see. <because we are in such dire finacncial straits the costs would be covered> This can be done so we know exactly where they are with cognitive ability etc, and to find out just how big the holes are in what they should be getting at school by right and what they are actually getting. This is such a relief to be able to talk to people who really do care about our kids and have no agenda other than fighting for those rights with us and on behalf of us..... DD Aspie had first day back at secondary school today and was so very scared but I am proud of her as she managed to get in the taxi on her own and get off to school, even though she was physically shaking. I haven't had any phone calls so things are looking good!!! Anne

Thanks all for your help, Sometimes it helps just to share the feelings especially when they are so painful. Anne

Thanks Bullet, Yes I will do this.. it's just so scary.... when I was trying to get help for my 12 yr old AS It took about 8 yrs to be taken seriously..... I just am not sure I feel strong enough to do battle again. Summertime, I have tried this, My mum, her granma who she loves very much sat her down and had a long chat but it has made no difference..... It's almsot like she lives in abubble and although she does get upset, this is almost fake too as she cries in an OTT hysteria before carrying on as she was before, like turning off a tap! Anne

I have lived in three different areas, Romford essex, Tameside gtr manchester and here in south waes and non have been of help to me... I am constantly battling with the LEA and am appalled my most areas of care or lack thereof. It seems to me that their are too many people at the top doing management positions that they have no idea of how to do, then their are others at the bootom <in my area> who are nothing more than telephonists as they can do nothing without checking first or asking a superior. I am totally fed up and have considered home tuition on more than one occasion, I believe though that the government should give home tutors the same amount of funding that schools get per child. I don't see why it should be classed as private education when they can't supply what we need in the first place. Anne

Can anyone offer any help? My daughter soon to be 9yrs is giving me problems. I did wonder if she has ASD, she walked on tip toes, she lacks spacial awareness but most of all she just doesn't seem to care! The lack of caring is especially regarding personal hygiene. She is a constant bed wetter once a twice a night, and admitted to me today that she often does it on purpose as she can't be bothered to use the loo ( her words) She constantly smells as she often wets herself in the day too, she doesn't clean her teeth unless I stand over her, and won't wash unless I make her. I think she shows signs of being very disturbed and i am so ashamed of myself because I am at the point where a lot of times I don't actually like her. As far as her walking on tip toes, she has been under the physios whosay she has very tight tendons in the ankles and also some tightness in her pelvis causing her to tip forward so she is in and out of plaster at present to help with stretching. The paed says she has some neurological 'briskness' in her lower reflexes but said that alone he didn't really know what this would be. She is now awaiting a brain scan to see if their is a problem their. I was just wondering if any of these problems seem familiar to anyone.... I have quite a few probs at home just now and don't think I can cope much longer...... My AS daughter is doing OK at the moment but I know that once she is back in school, all hell will break loose again..... Thanks again for all the support you guys give us. Anne

ooo this is a tough one. I had several probs in pregancy with high BP, and I had a precipitate labour <well no labour at really as she just popped out > her head was quite mis shapen as it had had no time to mould and we thought this was why she cried a lot... but she didn't stop for about 5 yrs! So who knows? my youngest DD (9yrs) (NT) had a billirubin off the scale and had to have an exchange blood transfusion and up to recently I had wondered if she was on the spectrum, I have recently been told that she has mild Cerebral Palsy, so again who knows this dd also had a horrific reaction to her pre school immunisations which caused a psorriasis which even today flares up and covers her whole body over the winter months, this reaction started exactly at the point she was injected, I do intend to have her assessed for AS as soon as I have the money as NHS testing around here takes years!! Anne

One of our SENCO assisistants told me should could pick these kids out at a glance too!! My dd by the way is Blonde hair. blue eyed and very peaches and cream complexion , not pale at all in fact for a blondie she tans beautifully!! Another AS kid in her school has brown hair, brown eyes and looks very different Like others have said, I have picked other kids out who are on the spectrum, usually though because of a mannerism, action or after having a chat with them and seeing similarities with others on the spectrum... I think some professionals just like to believe they really do have 'a gift' and this one has what a comedienne!! She certainly gave most of us a giggle on here! Anne

Awww thats a squidgy heart moment... isn't it a shame they stop saying these things when they get older? My 4 yr old NT son said yesterday, "Mummy you just look so lovely", I wouldn't mind but we had driven 17 miles in boiling heat for a clinic apt, as I had to be nil by mouth by lips were all dry and cracked, hair was frizzy with the humidity, sweat dripping off my nose (I know lovely pic) But he could see the lovely me!!! rofl Anne

My dd (11yr AS) has good long term memory but short term memory loss too. Each night I have to ask her to give me her mobile so I charge it or otherwise she forgets, I also leave things out for her ON TOP of her school bag so she remembers she has to hand a note in etc, she then keeps it in her hand as if it goes in the bag it never comes out again If her routine is upset in the morning, for instance if one of her sisters beat her to the bathroom, she would then forget everything and still be trying to remember to brush her teeth on the way out the door. Anne

We were told that without a diagnosis we would get as much help as with a diagnosis and we faced a 2yr wait after the SALT had assessed our dd for a full diagnosis. In the end we paid ?175 for a private assessment with a very good doc, and the assessment was shecduled within two weeks.... A lot of money if you don't have it but worth it if you have.... Unfortuantely it hasn't made any difference really to our dd's care, we still get no help and I have to fight tooth and nail for anyone to even give her the basic things she needs.... Good luck with everything!! Anne

I agree with the total respect thing in deisney, apart from one woman in Magic Kingdom who was not helpful at all, we spent the rest of the time being treated really well. One day my daughter wouldn't cooperate with the turn styles and the queue was massive behind us, security said, yo have to do it their is a queue, I whispered she had AS and she changed totally went the other side of the turnstyles and ina very matter of fact but not patronizing way she showed her how to do it, and mtioned the guard to take some of the ques to the gate next door. Anne

Although my dd only got her diagnosis age 10, she new she was always different and asked questions from a young age 4-5 about things, We have always just told her that everyone is different, and that she sees things in a special way... Ovr the years she has read more and more and is more confident in her difference, although as puberty approaches we are now having a few set backs as the gaps widen again.... As others have said, when children hear things all the time they just accept things and extras can be added as they develop and ask more questions. Anne

Am getting paraniod now... I seem to have a down on anything and everything.... In April we went to Orlando with VA, we spoke several times to the special assistance and were promised fast track check in, fast track through clearance etc etc <I know that quite a few of you on here have had good experiences with Virgin as I did a search and found your comments.... However when we went, we did twilight checkin and they new nothing about dd had no record of my conversations with special assistance <several calls> We ended up not getting any of what we were promised.. fast check in, fast track through security, our seats were even changed so we ended up right next to the galley and all its assocaited bangs and crashes both on the way their and back.... When we checked in at downtown disney, I explained what had happened on the outward flight and was told that all people with real diassabilities got put on the plane first, when I asked what he meant by that he didn't really have an answer..... Our kids didn't even get the back packs because they ran out!!!! It seems they don't know how many kids are going to board... anyway I wrote a letter of compalint in April and finally got a reply today! It basically said their dissability policy was outstanding , although I can only find referances on the website to physical dissabilites such as blindness and wheel chair users, no mention of other dissabilities.... Half my queries weren't even answered and they gave me ?150 in vouchers to use against my next 'full price' holiday! I promptly sent the vouchers back as I don't see why I should spend another ?4k to get the ?150 off just so they can win back my confidence <their words> So again I ask, is it only me that has had bad experience with VA? Anne

OMG what a nightmare for you all!!! Hope that you get back safely, and can begin to put the whole thing behind you.... Anne

Lauren Hugs... I really feel for you when you get worried about what actually goes on when you aren't their.. With three school aged children I have seen a lot of different teachers, I have seen how my kids get the wrong end of the stick, and imagine a punishment to have been much worse than it was BUT I have also seen on many many occasions my children especially my dd Aspie that they exagerate, that they are silly, that they lie!! I ahve also had restraint injuries.... I have also been ignored as recently as today! I often feel that especially with young teachers, they have no experience of any kids never mind kids with talents like ours and they are in way over their heads some of them.... Personally I would like to see a parents evening where we could give our feelings on the teachers and score them according to their people skills, listening skills and general teaching skills.. I also think that good teachers should stand up and point the finger at cr*p teachers instead of defending them... I know why they do it.... But how damaging...... Sorry If I sound angry and anti school at the moment but I have had my fill of it!! Anne

When my 11yr old dd came home from school today she was once again very upset.... Her best friend as yet again been 'having a go'..... This time though my dd told me that they were all laughing at her because she didn't understand certain words...... I couldn't even get all the words out of her but these were some of them..... you will have to fill in the blanks as I'm sure children might be reading this forum and I don't want to embarass anyone.. Bl** J** ( One of the boys asked her why she didn't know about this) Who*e Her best friend asked her this Retard!!!! Well I am amazed these so called christian kids would call anyone this!! (They didn't call my dd this bought laughed that she didn't know what it was) Po*n Again her best friend laughed because she didn't know what this is. A Ho I don't even know if I have spelt this right!!! Their were other words she wouldn't even consider letting me guess at as she felt they were so bad! She was so so upset, kept saying to me that she felt the words were dirty, but if the words were dirty then how come her friends all knew the definitions and not her. These kids are all 11 and 12 for goodness sake! I feel so sad.... My daughter has forbidden me from approaching the school even though I feel like telling the head what a lovely bunch of kids he has < am I over reacting?> She did say however that she no longer has respect for this 'best friend' and wants to avoid her from now on... I hope she finds the strength at school to carve a little niche elsewhere with a new group of friends.... It is so painful.......... Maybe this is how evryone with any child feels when they are exposed to the 'lovely' world we live in, but even though I am very liberally minded as an adult I am sick that these kids talk about sex all the time.... Sorry to rant again..... just need a hug I suppose Anne

When my dd was tested by ed psych she came out at lower average, whereas in reality she is in the top of the upper range in most subjects. My dd wouldn't cooperate as she couldn't really understand the process and as she has massive self expectations, unless she knows exactly what she is doing, she won't do it as then she can't fail. Personally our ed psych is a waste of time and has no experience with AS children, it's very frustrating when their opinions can carry so much weight. Anne

I think transport is a nightmare for many of us. I have recently had my case passed onto IPSEA who are going to proceed with a case against our LEA because, the way they provide transport means that my dd is being discriminated against (in her case because she is not allowed to attend after schools classes) Maybe you could have a word with the Autistic society, they are the ones who advised me in the first instance and got me in touch with people who really could help. That amount of travelling time is horrendous even for an adult never mind a child who has difficulties. Hope you get the help you need. Anne

Just another point about Melatonin, Apparently it works best if you still go through the calming rituals before bed time, as it's not a sedative it promotes natural sleep, so if a child is climbing the walls when they get it, it might not work. dd takes hers when she is in bed after she has been reading for sometime and when she is ready for sleep, she takes hers the cuddles down and is usually asleep within 30mins. She is nearly 12 though and understands her need for sleep it can be hard with the younger ones that still don't 'want' to sleep. Anne

my dd now aged 11 had years and years of sleep problems before anyone offered us help. We constantly had the advice, warm milk, calm time, bath time. SHe finally got Melatonin 1 yr ago and the difference was immediately noticeable, she copes a little better and she actually now enjoys going to her bed. our HA has now stopped prescribing it for 'new' children though they are honouring existing prescriptions, I think it depends where you live as to how easy it is to get! Anne

Thanks Eve, the home bit they are referring to is that she melts down most days after school due to the build of pressure at school each day. Anne