kirstie

I feel a little bit nervous of the change..........I know it is necessary though!

This makes me feel very uneasy. My son is very aggressive and was classed at nursery as being a danger to himself and others, he has come a long way since and is doing well with behavioural interventions. I was so concerned at one point that i mentioned to some professional with CAHMS that i felt it was my job/duty to keep them imformed about his temper and theirs to try and help him better understand how to control himself because who knows what the future holds, god forbid it should be anything as dreadful as we have heard about in the media of late. They looked at me as though i was totally deranged paranoid and neurotic! It was only really when i had sat down and thought about another well publicised case and i thought to myself, "Where were the parents, where were the professionals who knew of such violent tendancies?" that i thought i should say something, after all as parents a lot of the time we don't automatically know how best to help our kids. We don't always know that to change the way we talk to our kids even can really help with situations. we need help too, and it isn't always forthcoming! Anyway i hope that made a wee bit of sense??! My heart goes out to this family. Take care, Kirstie.

Hi Helen, you are in good hands here, someone will always have an answer for you should you have any questions. Take care, Kirstie.

It's excellent when they try something new. Lewis will eat scrambled egg, chips and sausage and pasta without any sauce and thats about it. anything extra on his plate will put him off too. Recently at school he's started to lick a peice of fruit and although he won't take a bite i think its a massive step forward. I would love to give hima healthier diet. we just give him lots of praise and try not to make it too much of an issue! Kirst.

Yes i think so, although my other two boys are gorgeous too there is something about Lewis's eyes that are striking. He has green eyes with the thickest longest blackest lashes i've ever seen, everyone always comments on them.Mine are blond and invisible without my mascara!!!

Oh Hailey, I'm sooo jealous! Scotland is notorious for having dreadful winters (and summers too come to think of it) and apparently we are in for the worst winter in a decade! brrr! The frost was setting in here a few hours ago and it is bitterly cold, we have already had a huge snowfall a couple of weeks ago. I love this time of year but i really hate the cold, once it sets in i can't seem to get warm. We are flying out to Perth at the end of March next year and then onto Brisbane then Sydney. We hope to get Married while we are there if we can get the relevant paperwork sent in time, do you have any suggestions as to where would be a good venue ? There won't be many there by way of the family of coarse but i'm so excited!! Hailey if you're free and we manage to pull it off you are very welcome to come, that is if your brain doesn't melt and explode all at the same time in that glorious sounding weather. I'm hoping the sun will still be shining for us when we arrive! Take care, Kirstie.

Hi there Janey, Yes i agree with what Simon said about kids with an ASD just don't seem to need as much sleep, quite simply they just can't ! I think my sons mind is racing all of the time so at night he can't switch off. We are now using melatonin too and what a difference it has made to him and us, he drops off around half an hour after he's had it. I never thought there would be a time where he'd go to sleep at a reasonable time and stay asleep! Also, have you tried a visual timetable where he can see it's bathtime, brush teeth, story, bed for example? They can help. I know the vomiting thing, Lewis used to scream so much untill he would either throw up or have a nosebleed!!! Good luck! Take care, Kirstie

Rainbow Queen, I hope you have found some info here that is helpful to you. I know onlt too well what the night terrors are like. My son had them from around 18 months and it was so hard trying to understand what was wrong. He would sit and scream and scream, he wouldn't let me near him or leave him either he would even try and escape out of the house! All i could do was be there in the room with him untill he went quiet and back into a restful sleep, no mean feat when he shared a room with his brother and your hoping the old lady upstairs hasn't got her hearing aid on full blast!! It has got better for my son (he's 6) but he still has bad dreams and will just come into our bed. I used to think that Lewis had such an active mind that was racing constantly that even when he was asleep he couldn't get any peace! Good luck, i know it's hard! Take care, Kirstie.

Thanks guys, I will certainly do my best in speaking out for all of us! I can really relate to being made to feel it was all my fault and the one thing some of these professionals need to stop doing is pointing the finger at us and our parenting skills, personally speaking i plied enough guilt onto myself as it was, questioning everything i did. I remember knocking on doors desperate for help when Lewis was younger they weren't slammed in my face because they were never opened in the first place. I went to one child and family centre where i had been in tears trying to explain how hard it was trying to cope with my son and they said "Come along for a couple of hours" so along i went, but i really couldn't handle sitting there listening to other mums telling each other how little Jimmy was eating all his greens and counting up to 100 all by the time he was 12 months (maybe a slight exagerration, but you know what i mean!!!) i wanted time AWAY from my son. I know that sounds harsh but i wanted time out even if that meant only to try and find the bottom of the ironing pile i was desperate. So i will definatley be telling them how much we need respite and why, and also how hard these supports are to access without a diagnosis. Wish me luck, they'll probably have to drag me off my soapbox once i get started... Take care, Kirstie.

My gut feeling after seeing the effects of diazepam is stay well away from it, as loulou said it is highly addictive. Don't go there. There are plenty of strategies your girlfriend can learn to help her cope, well, it's worth a go as i know they can help. Ie playing with a peice of blue tac sounds rubbish i know but it can have a calming effect. It does make me mad that doctors prescribe these pills so freely, long term they are bad news. Also, the person i know who was taking them had an extremely over active mind racing ten to the dozen and these pills seemed to have the opposite effect on her! Be careful, Kirstie.

Michael Palin??! seriously?

Hello 007, Still not checked out your site, i really don't know where the days go......... I will get there one of these days! Hope you and yours are ok, Take care, Kirstie.

Loraine, sometimes these things are soul destroying and you just want to explode. I'm glad you got it worked out in the end though, well done! <'>

Phew, i thought my computer was on its way out or had a virus!!!

Hello everyone, I hope you're not all to stressed out with Christmas shopping What it is, i've been asked to do a talk by SPECTRUM, our multi disciplinary early intervention team (funded by the LEA) to a meeting with social care workers My role is to tell them how it is for us as parents, coping with diagnosis, dealing with challenging behaviours what sort of experience i've had personally with respite and how parents feel about it. I feel like this is a graet oppertunity to tell it how it is, how bad the situation is for respite and how we can best work together in making the families and professionals communicate effectivley so our children get more out of these services. Does anyone have any input? We are the ones who really know what it is like to cope with every day life and how hard it can get. I think this is like a training day for the social care workers. Thanks folks, any ideas would be greatly appreciated. Take care, Kirstie.

Hi Everyone, I had Lewis's review meeting this week at his language unit. He is doing so well and the change in him is amazing, before at nursery (mainstream) he wouldn't even pick up a pencil and avoided any sort of arts and crafts and couldn't count up to ten, now he's doing paintings with great concentratin and counting up to 100 and doing maths adding subtracting etc by himself, he's very good at it. I am so very very proud. His main difficulties are the social aspect and they are working on this with him via his IEP and social stories. He is also loving his music therapy sessions (Nordoff-Robbins) and joins in with so much enthusiasm its like a release for him, so the recommendation is he stays on for another year which is great, but they are thinking that he may well be able to be integrated in to mainstream full time this time next year. I am so worried about this. I just feel that the reason he is doing so well is because of where he is with only 4 other children in his class it's a huge difference to 30 odd kids! Thet are also telling me if he needed support then additional hours would be awarded to him easily as he is moving from the unit into mainstream, but i know only too well the horrors of fighting that particular battle. It took us from the february last year (when he was awarded the additional hours for support) untill the December for someone to be found to fill the post and give him 1:1 at Nursery. The thought of fighting the system again fills me with dread even though it's a while off. If the Head teacher, Ed psych, speech therapist all decide he should leave the language unit where does that leave me if i don't agree?! does my say count for anything? And then if he isn't coping at Mainstream what sort of battle will i be fighting to get him back in again??? a flipping big one i imagine. Has anyone else had the same experience? Any advice would be really welcome. Thanks, Kirstie.

Take it easy, we are going nowhere. <'> I hope it went well (if you know what i mean) for you, and this is for the Birthday girl I find sometimes things seem so much worse in the dead of night when your head is just spinning. We are here so whnever your ready.... Take care, Kirstie.

Hiyah, I think it's what you call co-morbid. It's where conditions like SID and ASD's etc co-exist together. My son is the same and it seems AS and SID can go hand in hand. Our occupational Therpist drew up a sensory diet chart. Inittally i thought (niaeve i know!) Diet????? he hardly eats anything as ity is doh! but it was strategies for people working with Lewis and things to avoid. We recieved our dx report around 3-4 weeks after the fact. I would imagine you will get one but i'd ring if you haven't had one within a few weeks. Take care, Kirstie.

You shouls see Lewis's bedroom floor (wooden) it has chunks out of it where he has launched the controls of the playstation or even the console itself if he can't complete a level. We have had to put a timer in beside him and give him a certain amount of time on it otherwise he would lose the plot and we'd have to put him in his time out chair untill he calmed down. He isn't too fussed with playing it at the moment thankfully.

Yes a large glass of wine does it for me...... You should see my hand bag, stuffed full of power ranger bits, a gameboy or a comic and little trains or cars. These work well as diversion tactics particularly if we ever had to get ona packed bus in rush hour. That or talk to him about every character that was ever created in either, spiderman, Harry potter, Thomas the Tank........ The boy can talk!!!!! We are quite lucky in that Lewis isn't as rigid as some children and he will go to different places without too much fuss. Sometimes i tend to forget though that at times it can be a problem for him. For example, we have just participated in a research programme about prosody in Aspergers. It was split into 2 weeks and he was fine, but the second session the researcher had moved the chairs to the other side of the table and Lewis just stood there and stared at her refusing to even speak untill she moved the chairs back round!! Be prepared and expect the unexpected is my motto!

oh yes!!1 lewis talks over us too. Never really understood why i kind of thought it was because he didn't really know about the social rules of conversational turn taking. When Lewis does this talking incessantly pretending to be either a superhero or cartoon character i go along with it, just like when he had imaginary friends. We had to put seat belts on them and everything, the funny thing was when i asked him one day if ed was having any tea Lewis replied, " No he's not real you know" Doh, talk about feeling like a plank!! But i found it was in some way his way of 'allowing' us if you like, to interact with him. It can get a bit much but i don't care if people want to stare. It does sometimes get a bit tricky if he tries to interact with his peers, they just looka t hima s though hes some sort of weirdo. which hurts my heart. we are using this in his IEP, how to start a conversation appropriatley. Other than that, anyone who stares gets an icy one right back!!!

I agree, i would let her have the day off. My boy hated sports day and couldn't understand why on earth he had to run around with a potato on a spoon (instead of an egg!) why he wasn't first in the races and hated the three legged one! it would end in a horrible screaming meltdown from hell. Lewis is exaxtly the same regarding his packed lunch, the ham roll the crisps!! He will eat it and thats as good as it gets. He has started to lick an apple or a pear and has even dipped his finger into Richards home made soup (legendary!) for a taste so we are making slow steps forward. We always make a really big deal and fuss around him if he does this and he loves it, but i don't push it either. Tell the teacher to stop with the notes they do sound very condescending. Good luck and let us know what you decide to do, Take care, Kirstie.

This is exactly what we did with our son. We visited all 3 of the Language units within mainstream primary schools and the one special school for children with ASD's. It was emotionally quite draining but my instinct was the unit at the other side of town. It has been the best decision i could've made for him and they have 5 children in the class and they all move along at their own pace but are pushed more academically than they would be if they were in the special school. Lewis loves it and what a massive difference to when he was in the mainstream nursery setting. He is integrated into the mainstram class four days a week (half an hour each time with support) for phonics and 3 times a week for maths. He is like a sponge and really needs to learn! Go with youir gut instinct! Take care, Kirstie.

Reuby hon, you are doing all the right things, honestly. We are all here anytime. Our dx actually helped me to bond with my Son, i was so worn down and i didn't understand him so for us it couldn't have come at a better time. Now i am fiercley protective and so very proud of him. Our dx opened the door for lots of interventions and professionals that we would never have had the access to otherwise. Unfortunatley nothing in our 'world' comes without a fight so be prepared, he who has the biggest gob and all that.... Hope to hear from you soon, take care, Kirstie. <'>

Aw rant on, it will make you feel a bit better being able to vent. We all do it! A huge <'> to you and your boy. It is such an emotional time when you get the dx, i felt the same and i knew it was coming it's such as shock to hear some-one saying it out loud in an official way, if you know what i mean. I felt so down over that first week-end thinking, will he get married? will he leave home? will he manage school? the questions that rattled around in my head were endless. I just felt an overwhelming sense of sadness for him, but looking back it was probably more for me, as selfish as that sounds! He was (still is) blissfully unaware that he is 'different' for want of a better word. These were all my hopes for his future not his. But it's natural and i think most of us here felt pretty much the same way. Anyway there i was feeling quite down in the dumps when i saw one of the Mums at the nursery who i hadn't seen around for a while, we got to chatting and she told me that her daughter had been diagnosed recently with retts syndrome. A totally devastating time for her and her family and as she spoke and told me what will happen to her beautiful girl, how she always looked forward to shopping and going for coffee with her daughter and what will never be for them i had tears in my eyes and i thought, snap out of it, you have nothing to feel sorry about and so much to look forward to. That's just how it happened for me and it was the kick up the bum i needed at that time. I do know how you're feeling, but you will work through it and just know you're not alone. As for the statement, i'm not really familiar with it as we have A record of Needs up here in Scotland but it is most definatley not just a peice of paper it's a legal and binding document stating your childs needs and how they should be met. ie speech therapy, occupational therapy. They do take a long time and they're not always easy to get but unfortunatley it seems to be the way that we hve to ask for these things! If you think it will help your son then push for it, speak to your Educational Psychologist and have him/her put the wheels in motion. Good luck, you'll be just fine - i mean, you have us afterall!!!