kirstie

....and i'm not so sure it's the right time yet! I know Lew has come on leaps and bounds since he started and that academically he is keeping up with the mainstream class (integrates there most days for certain lessons) and doing well, but socially he's still very isolated. The mainstream boys won't let him play with them at lunchtimes/breaks etc and in his wise and insightful 7 year old veiw he said, "They're cool, and i'm not i play like i'm in a playstation and that's silly!" I don't mean the bit about them being cool and he's not is insightful or wise but he is now realiseing he's different (i wondered when it would come!) and it was heartbreaking to hear. He plays alone or with another girl he adores from his language class. The Ed Physche (phoned me today) his teacher and SALT are all recommending he starts mainstream next summer. My gut is telling me NO NOT YET!!! I'm so worried about it i have been in tears and puking for most of the day. The thing i worry about is moving him to our catchment school (too many reasons why i wouldn't send him there) or any other is that he would be i n a whole new environment where the kids or the teachers won't know him and might not understand his needs, if i kept him at the mainstream school where is now (language unit attached) he would lose the transport, snd i know he can't handle rush hour on buses to the other side of the city (been there it's awful for him) I was so hoping i wouldn't be fighting again quite so soon! Should i stick to my guns and insist he stays put for another year???? Bearing in mind this Ed Phsych hasn't spend much time with my son 1:1 or otherwise, or observing him in the playground etc so i am inclinded to dismiss her "recommendations" out of hand. I am in sucha turmoil, i don't want to hold him back nor do i want to set him back.........wot to do???? Any advice would be a great help i just don't know where i stand going up against all of them. Thanks!

Hear hear!! I've had the tutting old trouts on the bus too! I think most of us have had to deal with this sort of person. gets right up your nose doesn't it!!

Oh yes i remember pacers alright!! i was eating one on the way home from school camp and it pulled my train track style brace right off my teeth!! I also remember rola balls, that is a blast from the past! Does anyone know if you can get northumberland fudge anywhere or refreshers sweets, believe it or not they helped when i was having my son and i had dreadful heartburn! Cola cubes and pear drops did shred your mouth to bits. I remember it used to be 20p for a quarter of sweets and every friday our class would go to the sweet shop near the school and buy a quarter of whatever. Aww memories!!! Does anyone remember the black and white chocolate sweets, they were like minstrels? And what happened to the banjo??

Ophelia, Lovely name by the way, my son is in a language unit attached to a primary school. I'm so delighted i sent him there as it has done him the world of good. He is far happier more confident and the change in him is amazing. He is also accessing the carriculum and doing verty well. He joins the mainstream primary 2 class every day for maths and reading/phonics and sometimes for lunch and breaktime and maybe the odd other class ie- P.E. bit by bit he is being integrated and it is suiting him very well, however his review is next week and i think they might want to kick him out and into mainstream full time, not if i can help it they won't, anyway thats another story just wanted to share my experience with you. Good luck and let us know how you get on!

Yes, lewis has flat feet too, they are also very wide too. He doesn't get any pleasure in walking either and complains of sore knees particularly if walking over uneven surfaces. I haven't been to see about it but i think i will!

Great news!! Those forms, and then waiting for the decision to drop ontp your doormat is a mission! I was quite lucky and was awarded it from when Lewis was 5 untill he's 12, so no more nasty forms for a few years, phew!! Has anyone here had it for life?

<'> Hi, how're you feeling? I was sorry to read you've been through the mill lately and i really hope you are back on you're feet. We are here to help should you need a shoulder. Now....... what is this dilemma?!

My son had a major obsession with Thomas too. He would line up all of his trains and boy you had to look out if you accidentally nudged one out of place!!! He hasn't been into it for a while now but my sister-in-law was over the other day with her 2 year old and Lewis put on a Thomas dvd for him, funnily enough Lewis was sat there glued to the screen while his cousin was off elsewhere. Then yesterday when he came hiome from school i had to smile when i heard the familiar tune.....it brought back so many memories, i'm wondering if this is going to be his 'thing' again, we shall see!

Haven't been around for a while and i wanted to say that's fantastic news!! I'm so pleased for you both.

<'> Hailey, I wish you every happiness and hope you are moving on to wonderful things! I do hope you'll manage to pop in and i will miss you're kind and caring and informative posts.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

HOWEVER........ I feel you were right to feel miffed, i would've been. so many of us know how difficult it is to get food into iur kids and i have no idea how Lewis does it. It is only now he will eat some toast for breakfast but he never had anything before. His packed lunch contains ham sandwiches on white bread crusts off cut into triangular quarters, animal shapes, fromage frais, crisps (shoot me now!!) and a carton of juice. He has always had the same lunch and at least i know he will eat it, brown or wholegrain bread is out because it has 'bits' fruit is out because he hates the feel and taste. I had to be very careful because he was verging on phobic about his lunch and that is not something i want him to be afraid of, eating his food so if i can get him to eat this crappy food then fine i'll do it and sod anyone who has anything to say about it. They want to try cooking for a child with ASD, they'll soon realise it's not laziness on our parts or bad habits on the childs. I know every one of us would rather serve our kids up plenty fruit and veg but the reality is something different entirely. I don't think the teacher hada right to critisize so i would be writing her a little note back.........

Hi Paula, How are you holding up today hon? Where and who was this consultant in Scotland (pm me or you'll get into trouble!! ) I'm so sorry you are going through this and i think the way that so called Dr spoke to your son about his weight was appalling. You need media intervention and soon! Public outrage is what you need to make these people sit back and take notice that what they are doing is outrageous. We are all here and rooting for you, you know where i am if you need a chat! <'> <'>

great news Caroline, it's just a shame you have to go through this before something happens, fingers crossed you'll get an appointment soon!

I have PCOS. I was diagnosed after trying for a baby for well over a year. I had pains and always flooding periods although very regular. I was however extremely underweight at 7.5 stone. I am quite a hairy person though. I was going to be prescribed clomid after a scan showed i had pcos but we bought a puppy and the maternal instincts mustv done something because the next think i knew i was pregnant with Lewis! I haven't had any trouble concieving since so i'm not sure if my troubles are behind me with the pcos. I just wanted to say the whole process is very worrying and stressful so you aren't alone! <'>

Yes, we've had meltdowns where we've got out of the car and Lewis has tripped or dropped something and completely lost the plot. We've carried on going into the house and he is kicking off big time and wants all of the lights switched off again and everyone going back out to the car getting in and starting again! I think thats more of him wanting to rewind and start again without any 'mistakes' but yes it's been hard when he wants all of the lights switched back off and goes berserk if anyone touches that light switch!

Caroline, you need to get onto CAHMS again. I quite like the just going and refusing to move untill you're seen idea.6 months??? NOT good enough. We did a lot of knocking on doors pre-dx and were given the run around but just keep on knocking and they will have to listen to you. As for ritalin, when Lewis was at that age i was desperate to get some sort of help, medication being one of them. I couldn't wait for the day he was dx so we could try some meds. I don;t think ritalin is given untill they're 6 or 7 and that is with a dx of Adhd ( as far as i'm aware) I know there are other meds that can be given, but don't hold your breathe. They don't like to give them out unless absoloutly neccessary. Again, you have a fight on your hands.Whats new with our kids? It should never be this hard. If someone doesn't act on behalf of your son and soon, then they are failing him. It's unfortunate to say the least but in my experience our kids would be allowed to slip through the net if it wasn't for us parents being on the case. I'm afraid a few more headaches may be coming your way but i found having a big gob really helps, i know that sounds terrible but true! Take care, Kirstie.

What a rotten stinking bully. How dare he! Anytime you want me to come to the school with you i'm free. You know what people like that get right up my nose. Parents talking amongst themselves making their minds up......I've been there and you know what i walked with my head down amongst the biggest load of snobs you'll ever meet and after a while i thought ###### you lot, and i spoke out LOUDLY and funnily enough they didn't know where to look anymore. And i didn't stop talking loudly when any of them where in earshot, about Lews diagnosis, his behaviours, the people involved with him and dared any one of them to say anything. Funnily enough they must have felt thoroughly ashamed (hmm maybe not!!) of themselves because the complaints about him stopped! You are his voice Caroline, make it heard time and time again. Don't stop, because these ignorant gits need it drumming in! Kirstie.

Sounds to me like she wouldn't care if she did tell you these things! I'm sorry you are in this predicament but quite honestly your son ( or you) do not need this negativity. No wonder the little guys self esteem is being effected. trust me iknow what that does to them as they go through school. my eldest has very low self esteem when it comes to his school work (i don't know why, but he has dyscalculia) and he has struggled with it, so much so the ed phsyche ( eventually) is going to give him relaxation sessions. (he's 14 so it's been a long time in coming). You're Son is NOT thick and nor should she ever speak to him like that. How dare she. I don't think she has the tolerance, and therefor i wouldn't in a million years send my son to sucha damaging environment. I know you need the time out we all do but it's just not worth it. He deserves better than to be abused like that.Poor wee soul. <'>

<'> Paula, I am thinking of you hon, i don't know what has happened but we are all here for you if you need us.

This is something i feel very strongly about. Having had stillbirth at 37 weeks just over 10 years ago (from cmv- which by the way i've since heard can be linked to autism.I asked lew's Paed as it was something i was concerned about if the cmv was still in my system could it have caused his AS but she said no, as he is high functioning) Anyway, i think as group B strep can be so dangerous to the newborn it is something that should be done routinely i can't really understand why it wouldn't be. I asked the same about the Cmv infection but was told it is very rare to have a stillbirth due to that and there was no vaccination and really it was more about scaremongering, people would be frantic when it's something that can't be prevented. It just makes me worry there is so much we don't know about in pregnancy that can have such devastating effect. As you can imagine being pregnant again it's such a frightening time and i do tend to worry the whole time............

Hi Caroline, I agree with oracle.You do have to take this seriously. Lewis was very much the way you describe Robert to be. Even down to the knives! We have them hidden away in another cupboard as he was taking them out of the drawer and had even marked himself. I was petrified as to why he was doing it. that particular phase didn't last thankfully. I went to CAHMS and told them i was worried about Conduct disorder and oppositional defiance disorder, but you know them like i do and was looked at as though i was loopy. They won't give another dx ontop of AS (unless very very neccessary, as they don't think it's helpful!!) in my opinion CAHMS weren't helpful atall. I did learn though that Lewis's behaviour was far from acceptable and couldn't just blame it on the fact he has AS. He will grow into a teenager who will more than likely be bigger than me and what then?? Let him carry on being aggressive, wait till he thumps me when he gets to 13,14,15? Not atall. I had to regain control of the situation and by god it was hard. But he knows who is boss now, and life is so much happier for everyone. Robert may well have something co-existing with his AS it's not uncommon but his consultant is the best place to start. It's really not funny when they're in your face baring their teeth saying awful things, don't get me wrong Lewis still has his moments but i am bigger and louder so he just doesn't get away with it, he has to know i will not tolerate such behaviour and language. I'm not saying for one minuet i bully him into submission but he has to know i will not put up with it, whether that means going onto the timeout chair, no playstation and NEVER moving the goalposts. If i say no i mean no and i have the final word. Are spectrum having any input with Robert? I'd be interested to know what thay would suggest. I hope someone can help you with this i know it's not fun and the sooner there is some help available to you the better. Let me know how you get on, Kirstie. <'>

I don't understand how the DLA is worked out anyway. Some people have to reaply every 3 years or so, some people get lower or middle rate and some get higher, and some get high rate for mobility. we were awarded it when Lew was pre-dx at the age of 4 and don't have to reaply untill he's 12 (thankfully) I just think it's very unfair how it's worked out. We get high rate care, and low for mobility, so why do some get middle rate for care??? it's stupid.

Hi Caroline, Yes expect very little and you won't be disappointed!! Sorry but it's true. We have been to CAHMS and they say very little, play their cards close to their chests and really made me feel a lot of the time i was a neurotic idiot. It depends what you're seeing them for. If it'd behaviours theres really very little. They might ask you "Do you play with your child?" and all that cr*p . There are programmes but i suspect they will say Robert is too young and won't benefit from them, as they did to me. I'm not sure why we get referred to them as there doesn't seem much for them to provide interms of support and strategies. Again i found Spectrum to be the ones who gave me the behavioural therapies, play therapy sessions etc. Good luck, and keep onto them!

So Am i Ona bad day: rottweiler tired lazy on a good day: witty intelligent happy.

<'> Och, i hope you are feeling better and taking it easy at the moment with the running! I must admit i do love reading your posts. They do make me laugh (not at your injury of coarse ) I have just joined a Gym today! It was a super duper special offer of 2.99 a week it's not a trndy posers paradise but friendly relaxed place where i'm sure i'll get rid of some of my unneccesartry padding! (pregnant or not, i need the excercise!) Make sure you ease back into it gently!