Stephanie

Thanks for your replies!! And no one said "Stephanie, you are such an idiot" - that has to be a good start. You said some great things, negative and positive that I will use going forward. I think part of it is my "coming to terms" with the whole thing a bit better, I feel great at the moment, and feel that I am accepting it all a whole lot better. We still haven't told the family yet because we don't see the need. When he was diagnosed last year, it was like my whole world had come crashing down and I saw the bleakest of pictures for his future. I never dreamed that he would progress so much as he has done in the last year. Don't get me wrong, he still has a long way to go in terms of communication and social understanding but he shows very little in the way of traits (no tantrums, readily accepts change, wanting to and trying to make friends, no flapping, uses imagination, talks a lot better, initiates conversations, has learned to pedal a bike, can read beyond year 2 level). Whilst he is in a small infant school I really don't have many concerns although when he changes school at 7 - that may be a turning point, and I have to make sure he goes into the right environment for him. And yes, I have noticed he is worse when he's tired. I will take your advice and make the most of all this whilst I can. Thanks - mwah! Stephanie

Yes, maybe I am just in denial and I know for a fact that ASD is lifelong and just doesn't go away .. but in the last year my son seems to have grown out of most of his "traits" and I feel that if he was assessed now, the results of the assessment might differ from when he was officially assessed a year ago. The improvement he has made in a year has been quite remarkable. He is very high functioning anyway and not "text book" but then who is?? He is now 4 coming up to 5 years old. Maybe I am clutching at straws and being an idiot but has anyone else been through similar??? He is in mainstream school, doing really well - a few problems on the social side, but nothing major. I don't want him re-assessed or anything as he is doing so well on all the help he is currently getting. Feel free to tell me I am being an idiot - I probably need to be told!

Hi, my son is HF A so whether this relates to your situation I don't know ... My son took 2 years of on and off training, I was at my wits end with it all, I made the mistake of using pull ups too, I think the kids see them as just another nappy. I did the usual "big boy pants" thing, bought all the POTTY TIME video's, tried various different types of potty, toilet seat inserts, bought every book on the subject etc. I felt really under pressure as he was coming up to four and everyone kept asking me about why he was in nappies (not dx at time). I felt like it was me that had failed and that I wasn't doing it right. All the other kids at Playschool were in pants, he was in nappies, he is tall for his age and looked about 6 so there were many questions being asked. He just did not get it!!! In the end, I just decided to have 2 weeks dedicated to it. Not going out anywhere etc. Sitting him on the loo, singing to him (made up songs that worked a treat!), giving him a drink on there, talking about it in a calm manner, offering rewards etc. The big boy pants went on (they had to be new and of his choice) nappies were banned apart from at bedtime. I ran him to the loo anytime he started to do anything. I was a nervous wreck as we had just had a new carpet and was watching him like a hawk! After one or two times of getting there in time, it just clicked and he always got there himself when he needed to go, even if he does always leave it to the last minute. Obviously you panic everytime you go out and take a spare set of clothes with you for a while. He's fine now, got it all sorted, still refuses to stand up and pee but I'm ok with that (keeps the floor cleaner anyway). I often wonder whether he got the hang of it because he had matured enough to do so or whether it was my no nonsense "I'm at my wits end lets get this issue sorted out right now" frame of mind. Sometimes we are so afraid of failure we don't even try or try half heartedly, then give up - very guilty of that one myself. I know the most infuriating thing people say is "give it time, he'll soon get the hang of it" - to a certain degree this is true, it is just having the patience to wait which is difficult. On the spectrum or not, all kids are different, different things work for different people - I hope some of this may be of use (if you need books or videos etc - I have them all so contact me!) Good luck! Stephanie.

My friend had her son's 2nd diagnosis at ******* and said it was good - his initial one was at **********, where my son was also diagnosed. I note that you have been given the full list but I thought you might like a recommendation too. (Edited by Moderator Bid Sorry guys, no names...PM for details!! )

Ha ha good, it's not just me then! I'm ok til I get to the second verse of talk "are you lost or incomplete/ do you feel like a puzzle you can't find your missing piece/ tell me how you feel/ well I feel like they're talking in a language I don't speak/ and they're talking it to me". Nightmare! If I can't get to the radio before that verse comes on, I've had it - time to re-apply the mascara! What are we like?

A friend and I both have 4 year old ASD sons and are thinking of taking them for cranial oesteopathy. I have used it before for my other son when he was a baby and it had astounding results. Has anyone tried it with their ASD child - I would be interested to know what changes I may see in my son if it works. Be interested to hear any comments. Cheers lovelies! Stephanie x

I am looking for some WHY/BECAUSE cards (not too basic) - any ideas where I can get some? Incidentally I have a few more Todd Parr books (excellent) should anyone be interested. Stephanie.

I don't know if it is just me but everytime that Coldplay song "Talk" comes on I end up in a flood of tears because the words so relate to my son/autism - and it is so catchy you end up singing it for the rest of the day and end up totally miserable! I must get to the on/off button quicker!

Oh wow so it is related in some way then, thanks for all your replies! I couldn't put my Asa on the Gluten/Casein free diet, he eats a very limited diet and just will not try anything new. He only likes sweet things and not savoury and eats a lot of bread - he will only eat toast - with jam, sweet sandwiches, crackers and dairylea, some cereal, some fruit (thank goodness) and has lots of sweet snacks. Apart from the crackers, an occasional McDonalds happy meal (nuggets of course) and those reformed Jetters or Dinosaur shapes, everything he eats is sweet. He seems to have an irrational fear of potatoes yet will eat the Alphabite letters (frozen potato things) because they are letters and letters are his thing! Count the gluten and casein in all that .. am I the worst mother ever? We had some help from a Food Psycologist but his sheer reluctance to try anything new means we struggle - in fact we have given up trying now. I will take on board your comments though - will look out for stress/reaction to orange juice etc. Thanks peeps! Stephanie Mother who shovels her kid full of s**t!

Oh wow, I didn't know the hatred of queues was an ASD thing, just thought it was my little boy!!! We have to say "it's not a queue, it's a line" otherwise he kicks off and it's usually whilst he's with his Dad (I don't do rides!) who gets really stressed with it. We love Florida but the queue thing was a major concern - now thanks to your advice I will be discussing this as an option for holiday 2006! I will also make enquiries whether Legoland do a similar scheme as we go regularly. Do you have to have proof that your child is ASD, mine is not registered disabled or anything. Great advice though, cheers! Stephanie

Might seem like a weird one, but I was watching that programme on the Jackson's the other night and they were talking about her ADHD sons food allergies and she mentioned that his ears were red. I have noticed my 4 year old HF ASD son sometimes gets bright red ears, usually in the evening and I put it down to heat (even when it wasn't particularly hot) but now I am thinking ... hmm, I wonder if it is food related. Does anyone else know anything about this or what could cause it. Thanks, Stephanie

Hello I don't know if this is the right place to post this! I have recently started to attend meetings for parents of ASD children in the Staines area and have found talking on a one to one basis so helpful that I wanted to let people know that this meeting exists. They are bi-monthly, very informal. I would be happy to give anyone interested some further information, so please contact me (I am not the group leader, just an attendee who has a 4 year old HF ASD son). Thanks, Stephanie

My little 4 year old HF ASD son, keeps wetting his fingers in his mouth then pulling his fingers down his face either side of his nose. He does it more so when he is anxious but also he does it for no reason and finds it difficult to stop. I think it is called strimming or skimming or something. Before this he used to twiddle with his boy bits (but what male doesn't - ha ha!) It is annoying the hell out of us and is the only thing that makes him look visibly different so we would like him to stop. We got him to stop flapping and jumping and he can control that, but how do you stop him from doing the face rubbing? If I tell him not to do it, he either does it anyway without realising or starts doing something else like touching the back of his head quickly. He is very HF and can be reasoned with and has a clear understanding .. any advice? Stephanie

The sooner the powers that be cut all this education red tape bullshit and start actually helping our kids, the better. It's not only the poor communication between all the relevant parties that totally vexes me, it's the time these people take to put everything into action! Seems like I have to chase everything up at least once before anything is ever done. Also, in terms of all the various reports, it is very difficult to contradict them and even if I do, what I say never seems to be put in writing (yeah, like these ejots know more about my son than me). On a lighter note, something that made me laugh - totally irrelevant for this thread but my four and a half year old, came home from school singing today ... "the farmer's in his wife, the farmer's in his wife, eee-iii-addy-o, the farmer's in his wife!" Ha! Stephanie x

I just got my son some books by an American Author called Todd Parr, There are six, "Things That Make You Feel Good, Things That Make You Feel Bad", "The Okay Book", "Underwear Do's and Don'ts" "Do's and Don'ts", "This Is My Hair" and another one which has slipped my mind ... Fantastic, they are simple books aimed at under 7's with messages like "Bullies are Bad, Trying new things is good" my four year old ASD son loves them. The Author e mailed me and said he'd had a great response from the parents of autistic children. Stephanie

The things that worked for my son (and I never thought he'd get it) was a silly song we devised that we sang when he went to the toilet ... I won't embarrass myself with the lyrics - oh and reward stickers! The potty never worked, he was too big for that and it stressed him out, the loo seat worked but he liked the comfort of being able to sit with his feet on something so he had to have that too. Pull Ups were convenient to use but they didn't help train him as he just saw it as a nappy. You have to try them in "big boy pants" and make a decision that there will be no more nappies unless at bed time .. and face the consequences that you might have to do a bit of washing. You have to watch them all the time whilst training so you can scoop them up and run them to the loo as soon as they start weeing/straining. My son was 3 years 8 months when he finally got it ... I had been trying to train him since he was exactly 2 (didn't know he was ASD then). Once he got it though, that was it - wees and poos, he's never wet the bed yet. We are currently trying to teach him to wee standing up ... yes, more washing .. of his clothes and the floor!!! All kids are different, I can only speak from my experience but try a silly song .. worked for me! Stephanie.

My four year old lil matey boy starts school in September, he's going into a small mainstream junior school (only 16 kids in the morning and 9 in the afternoon - ideal). The statement process is currently underway ... they declined him the first time so I had my say .. and hey presto they overturned their decision (girl power ). His little uniform is all ready and waiting .. just the name tags to sew in (groan). He has attended a speech and language cluster for the past 5 months which has given him a great foundation for "big school" and he's really looking forward to it .. although everyone saying to him "oh are you looking forward to going to school" is making him think "hmm, what are they not telling me?" People make too bigger a deal of it (says me ... the mum who will be standing in a pool of tears at school gate on his first day). I fear for him being at school (and will so even more when he changes school at 7), but I know it's another step to us being a bit more independant of each other. Because he's HF, he can read at the level of an 8 year old ... I hope the school take that into consideration or he will get held back. Gosh, where did all the time go, they grow up so quickly - bless them! Stephanie x

What is eye q? I actually saw it on the counter at Boots today but didn't give it a second look ... what am I missing? Stephanie

Makes you realise how different they all are ... my 4 year old son hates sausages/meat/potatoes/pasta etc. He would only eat the same three meals a day (cereal, toast, Jetters and Alphabet potato letters - oh and yoghurts) for 2 years, then I got advice from our HV. He tried a few new things, cheese (grated and on its own), sandwiches - always sweet fillings (needed him to eat those as he starts school in Sept), egg .. everything else he eats is junk - crisps, sweets, cakes etc much to my annoyance. He wouldn't touch a chicken nugget at home but get him to a MacDonalds and it's a different story!!! One thing he has got a liking for this year - ice cream and lollies ... and I'm so happy about it as I always felt he was missing out. If there is anything else I should try him with, let me know! Stephanie.

My son is just coming out of his "issues" with clothes. He always liked to be covered .. long sleeves and trousers, no shorts or T shirts and he always has to have socks on. I got sick of him wearing trousers all the time, and decided to try to get him in shorts ... oh my god!!! But I kept on being persistent ... I tried it again week after week, I found some shorts he liked and then made him wear them for 5 minutes, told him the score "you wear them for 5 minutes, then you can wear trousers, then you will get a good boy sticker", once he had them on, I used diversion tactics, getting him to play etc, counting down the minutes (but making 5 minutes actually 20 minutes) and I always made a fuss "wow, tell Daddy when he gets in what a clever boy you are etc" ... it worked, he'll now wear shorts and T shirts without question (and I never thought he would). I think I was scared of his reaction because I knew he hated them so much, and if it wasn't for my perserverance we wouldn't have come this far. I think sometimes we are so much in fear of upsetting them that we avoid it too much. Still can't get him out of socks though! Stephanie.

The frontal lobe thing interested me. When I was 36 months preggo with Asa, we had a scan and they told me that he had too much fluid in the ventrical horns in his brain ... we returned after 2 weeks of hell for a follow up scan to which some Doctor said "oh it's more than average, he's not got hydrocephalus and we think he'll be ok blah blah, the baby will be fine.... And he was (until I realised he was a bit different at 2 years of age). I wonder now if there was a link. But then I'm always wondering about the cause. Thanks for the info though.

I tried 2 sessions of CO with my baby when he was 8 weeks old as he was fractious and colicky ... the first time I went I thought it was a load of old cr*p .. she hardly touched him and I felt like I'd been ripped off �35 for half an hour of nothing, then I went again (my HV insisted)... and I can honestly say, it worked wonders, he was cured instantly. I would happily give my 4 year old ASD son a try with it (I didn't know older kids could have it!) .. I'll try anything for him .. I'll be phoning her tomorrow to make an appointment. If anyone in Surrey (Egham) wants her number, let me know. Stephanie x

Hi, I've already introduced myself on another topic .. and then I found this one and thought maybe I should say hello on here ... I'm Stephanie, 34 year old married mother of two boys from Staines, Middlesex ... my 4 1/2 year old son Asa, has just be diagnosed with HF ASD, they initially thought it might be a communication disorder and he has spent the last 5 months at a Speech and Language Cluster (OMG! Marvellous!) ... I went to the review meeting only to have him diagnosed there and then with ASD, it was a bit of a shock (although really I always knew and have just been in denial - still am "I'm sure he'll just run it off!" lol). I have another son, Griffin who is 7 months who I am fearful may also turn out ASD and it is slightly affecting my relationship with him. As Asa is my first born, I just assumed he was the same as any other child as I didn't have anyone to compare him to .. I just adapted myself to him. Like any mother of a newly diagnosed child, you worry about the future, about raising a 'nerd' who nobody likes (sorry but YKWIM), about him being bullied, being different, not having the life you planned out for him in your head - in some ways I am in mourning for the life I expected him to have. Just taking it one day at a time at the minute, good days and bad days ... it will take a long time to sink in, and it will be a while before I tell my family/friends etc. He starts mainstream school in September (bless him in his little uniform!!!) All I know at this point is that I am willing to fight for the best for him .. whatever it takes, he is so clever, so handsome, so loved and worth every effort.

Hi I'm in Staines, Middlesex ... would be happy to hear from anyone local! Cheers, Stephanie x

Hello fabby folks! Just a quick question ... my son was diagnosed with ASD a couple of months ago at 4 years old. He is high functioning (not sure what that exactly means) ... he is "ASD" which I've taken as "Austistic" and that's all they have said. Will his diagnosis become less vague as he gets older ... will they tell me where exactly on the spectrum he is? And how will I know if he has Aspergers? ASD just seems like a big umbrella to be under and I wonder if it will get broken down so we can know exactly what is wrong with him. As he is highly intelligent and has a few 'specialties' I wondered if it was AS, but then his communication is lacking and they have said that isn't the case with AS kids. Too many Doctors with long job titles, too much input from too many people and too much political red tape have confused me. Can anyone clarify from their own personal experience. Would appreciate it, thanks Stephanie.