kirstie

Thanks Lindy and BD, I will check that link out in a moment, thanks for that. I don't know whether i'm coming or going at the moment- i'm sure i'll meet myself in the middle somewhere soon..... I am back to the same feeling i had when Lewis was diagnosed of who do i blame, why has this happened? It's quite heart-wrenching, but as he is only mild i suppose he has every chance of progressing well witha little help. That word MILD, if i hear that again i think i'll scream. Thanks again guys.

Hello everyone, I know this isn't ASD thread but i know that some of you here have children with cerebral palsy and i wondered at what point did you know something was different? And after your initial visit with a neurologist how long did diagnosis take and what tests were done to get to dx? I'm sorry i don't mean to be intrusive but i have concerns my 2 yo, no i'm actually pretty sure he has mild spastic hemiplegic cerebral palsy and i am in much need of advice.

Hi, just wondered why i have to sign in every time when i've asked the forum to remember me every time?? i didn't have to before but for some reason i do now, any ideas?? Thanks

Hi guys not been around for a while, new baby and toddler with the terrible twos has kept me very busy, Lewis however has never been better! Anyway i have news of creches and suchlike that will take children on the Spectrum the downside is that it's in Edinburgh so i'm sorry to everyone who this doesn't appeal to, First of all theres a large shopping centre who have a Creche and to be honest has been a godsend to me over the years with Lewis hating shops, crowds etc, i knew they took kids with additional support needs but i discovered the other day that they do one to one with kids who need it <'> FAB! There is also two summer playschemes that take kids with ASD one specifically for our kids and another for everyone The ages ranges vary so pm me if you want information it really is worth it -as i said the shopping thing i think we can all relate to even if it means an hour or two to browse or pick up something from Marksies for tea (i wish!!) or a cup of coffee, i am counting down the days till my toddler can go...... Hope this helps!

<'> Thank you all so much for the lovely replies! Eilidh is gaining weight well and is such a little gem it's wonderful to say that i have a daughter...

Shaz, <'> Hey hun, how are you? We are going through exactly the same right now with our 19 month old. We had him at the Orthopedic clinic the other day to be fobbed off with "lets see how things are in 3 months" but he isn't walking yet although he is trying to but just can't. He has a definate lean and can't put his weight down on his left foot. I have a feeling it's the lower limbs (left one to be precise!) so he is on his tiptoe, and will then have to compensate with his right foot. i KNOW fine well something isn't quite right (he's a whippet on his knees) and they didn't even do x-rays, i was livid. The GP checked his hips and they seem fine but without an x-ray how can they say he seems fine maybe a bit of a late developer, i really wouldn't be going through this if i didn't think there was a need and i know there is, his gait is just not right, anyway i thought i'd share with you and let you know i know exactly what you are going through, hope you are ok, Take care, Kirstie.

GIRL!!!!!!! We are so delighted with our little bundle of joy who arrived 5 weeks early (pre-eclampsia) and is teensy weensy (4 lb 1 oz) but after a wee stay in the neonatal unit she is finally home and we are so in love with our little angel, after 3 boys it is strange having a girl, but wonderful strange. We have named her Eilidh (pronounced Ay-lay, it's gaelic!!) so that is why i have not been around for a while, she is definatley our last (feel a little sad to say that although she really is!) and i intend to enjoy her as well as the others of coarse, but thought i'd let you all in on the great news, hope everyone is well and coping with the Easter hols....

Lewis finds sarcasm and some jokes quite amusing, i think it's the actual word sarcasm, and the sound of it he likes if that makes any sense. When you say something sarcastic to him you can see his mind working for a moment before he smiles so he does have to think about it first but he's getting there. We are of coarse getting the endless "knock knock" rubbish jokes that he finds hilarious particularly if he's made them up himself. Lews being taught the meaning of sayings in school from his SALt like what it means when someone says "get your skates on" and "flying off the handle" he understands the meanings now but still finds the sayings themselves funny.

Thanks for your replies! I like reading all of the different stories, maybe i am worrying over nothing, but you know when THAT feeling is there and it's niggleing away at the back of my mind. Aiden didn't sit up untill his first birthday and didn't crawl properly untill he was about 14 months maybe later, he preferred the sniper approach and thinking about it would drag the left leg. It's a strange one as he will walk on his knees no problem! anyway i shall let you know how we go at the clinic next week. Thanks again!

Hi all, just wondering if any of you have had an apparently NT child who was very slow to walk or talk? i mean 18 months or older. I know all babies and kids develop differently but my son has gone 18 months and isn't walking. He is to attend the development clinic next week but i am quite worried. He will walk holding onto the settee or table but theres something odd about the way he does it. He will only put one foot flat to the floor and its almost as if he doesn't want to put his weight on the left one. Anyway thought i'd ask, any replies would be appreciated!

My boy's room is disgusting! Its got toys stacked up everywhere and just piles of mess it drives me mad. My eldest at 14 will make his bed but he isn't that much better. I end up going in armed with black bags and ruthlessly chucking things out. What gets me though is how my son can sleep with the piles of toys on and in his bed, it was like whebn he was little he just HAD to pick up stones from the same place every day plonk them in his buggy sit on them and never look at them again, he's doing the same with his toys on the bed! I will be going into their room in the very near future, if i'm not back online soon send in the search p arties!!!!!

It is interesting particularly as i'm about to undertake my biggest fight to date, My son is in a language unit and doing fantastic, academically that is, and now Ed Psyche etc are trying to force him out the door and into his catchment mainstream school. My gut instinct isn't telling me no its SCREAMING at me NO NO NO!!! He is still socially very isolated and very inept when it comes to initiating conversations, we all know of coarse that AS is a social and communication disorder (for want of a better word,!) but they are very convieniently ignoring that saying what a success story he is, yes, he's a different boy to when he first started but that to me says it all he is quite obviously in the right environment for him having tried a nightmare 3 years in mainstream nursery. one size doesn't fit all and they would do well to remember that.

Hi Joeboe, It could've been me writing your post!! My son is also 7 and is also isolated in the playground. He is in a language unit but integrates into the mainstream part of the school daily, the boys tolerate him within the classroom but not outwith. I also asked him who he played with at lunch and he said no-one as the boys tell him to go away, it hurts me more than it hurts him but it broke my heart when he said "They're cool and i'm not" I did mention it to his teacher but they are brushing it under the carpet mainly becuse they want to kick him out of the unit and into our catchment mainstream, i'm so not convinced. Someone suggested to me that he could probably benefit from a play programme, she didn't say what it involves but he needs something. So, if you come up with anything let me know

<'> Aw Caroline, you are most certainley not being selfish! It really is ok to feel this way, we all have at some time or other. Part of me felt so upset when my son was diagnosed with AS a few years ago and the other part felt relief. I was relieved that i could finally bond and understand my Son and his behaviours- that day wasa very important one for us all. I hurt too when he tells me that the boys in school won't play with him because "They're cool and he's not" (his own words) and i think someone else said it for the most part it's the rest of the bloomin world that has the problem!! Our kids are the most wonderful kids and we all know how lucky we are to have them. Someone said to me one day not long after the diagnosis when i was feeling quite low, "You know God only gives special children to special people." I'm not a religeous person (see, i can't even spell it!!) but that made me feel so much better. Just a kind word, a little gesture can make all the difference and you will get that in abundance here whenever you need a shoulder there are so many wise souls here who are very willing to listen and understand. It will get easier to deal with in time, but in the meantime we are all here........ <'> Take care, Kirstie.

Hi all, Just a general enquiry about Council Tax. I wondered if anyone gets any sort of rebate when they recieve carers allowance bearing in mind i'm in Scotland and things may vary from England/wales etc. Thanks. Kirstie.

I think you did the right thing for your Son. As you can see most of us have been there too and sometimes there's nothing else for it, they need to be kept safe when they're in meltdown mode. I remember being at Nursery with my boy and he kicked off inside and it spilled out into the playground with the staff safely inside watching froma distance, they really had no idea what to do. I in the end had to do exactly what krystaltyps said and get my arms round him from behind and wrapping my legs round him and getting him into the sitting position and just hanging onto him for dear life untill he calmed down, took a while and when he did eventually calm down he was frightened by the intensity of it all, i felt shaken and very close to tears myself but it had to be done as he was heading for the gate and a nearby road. It is an awful feeling but needs must sometimes so don't beat yourself up, we are afterall only human and our first reaction is to keep our kids safe and if that's how it has to be done so be it. Up here in Scotland the teachers (in special schools) are taught to use CALMS to restrain (can't remember what the CALMS stands for) but one of them is quite subtle where the teacher will see the pupil becoming uptight or whatever and stand at the side of them with one arm around them holding their arm (not too tightly) and the other hand on theirs it's meant to be comforting and almost feels like the teacher is putting an reassuring arm around them to calm them and deflate a possibly volatile situation, it is meant to be very effective though (My Auntie works ina special high school with kids on the spectrum, and she told me this) Anyway, just wanted to let you know you're not alone!

Glad it's working for you both!! My son Lewis has had it for a while now and i started him on 3mg but he's up to 6 now in a little bit of milk around 8pm by 8.30 he's zonked. What a difference it has made to us all. I don't give it to him at the weekend or during the school holidays (unless it's a must for all of our sanity) but his behaviours are great and he can concentrate in school so much better because of the extra sleep. Without it however he can't sleep much before 1am and he knows he needs it to help him get to sleep. He does still get up during the night but will go to the loo and back to bed unless he has a bad dream...... The bobbly ones didn't work for us either but i'm told it takes a while to build up in the system for it to be really effective. Glad you're getting some rest (and your little fella) i too felt like it was Christmas when we first got it although i felt very guilty for a while like i was doing something really underhand by giving hima little added extra in his bedtime drink....that feeling didn't last long What i was wondering is can the Melatonin be used into adulthood or won't it work? I know my son is only 7 but i do worry about these things and how he will deal with the inability to sleep when he's older the alternatives are extremely worrying, by which i mean alcohol, sleeping tablets etc i'm sure you catch my drift. I know it's a long way off but you know how it is when you're a Mum.....

Hi all, we have ourselves Ian Jordan as a member here and he deals with all of the above and is an expert in his field so pm him and i'm sure he'll help you with any questions or point you in the right direction he's very helpful.

<'> Fantastic news lou-lou, It must be a real relief to you knowing he's settled in so well. Looks like you made a great decision and he is making progress. My Boys go away with their dad during the school holidays and the house seems so empty and way too tidy SShhh don't tell anyone i said that as i'm usually complaining about the mess!! I totally ignore their room and change the beds etc the day before they come home. I hope things continue to go from strength to strength, they just seem to surprise us when we least expect it. Well done Kai, what a star!

I second that

Nells, I'm really really sad, i know that life is hectic for everyone and sometimes we need to move on....but i'm gonna miss you

<'> Peppa, I really feel for you, i understand where you're coming from. My son is 7 now but his behaviours peaked at 3.5- 4 years old and it was hellish. I must say it does get easier with time and the right support so hang in there. I remember Lewis would have an absoloute rageing meltdown if i didn't put his cup of juice in a particular place for him so he could take a moment to look at it and then take it himself, also if i didn't give him one shoe to hold while i put on the other which was a nightmare when trying to get us all out the door to take my eldest son to school. But i was told to use a timeout chair and put him on it when his behaviour was inappropriate and completely ignore him if he screamed and just to calmly put him back in it if he got off it, making no conversation or eye contact with him. Also i was told ignore the cheek and nasty comments and praise the good behaviour, or at least try and take the negatives out of anything i said to him, no mean feat but it was definatley worth it! Also Lewis seemed to like his visual timetables and pictures for a while but there came a time at Nursery that he refused to look at them never mind add/take pictures away and it would result in major upset so it had to be abandoned. I think the strategies were implemented too late in the day at Nursery for them to be fully effective for him but once he started at the Language unit it was clear from the very start what was expected of him and there was no getting out of it for him, he has thrived on that and has very few behavioural issues if any now. I'm sure you will understand the triggers in time, they are not always very obvious to us but you'll get there, Take care, Kirstie.

Hi JJ's Mum, my son too vomits with food. He has always been a fussy eater and would gag as a baby when i was weaning him, but his problem at the moment is his sandwhiches at school. I always use the same bread and ham and cut them the way he likes them so i know he'll eat them, but one day i must've used a different bread or ham- not sure which and he has practically become phobic about it. After the offending packed lunch he would become upset about lunchtime before he even left for school it got to the point i was having to pick him up because the anxiety was becoming so bad he would have a sore tummy, he'd go white sometimes throw up and then fall asleep wherever he was, this i think is stomach migraines brought on by stress. Even just the smell is enough to make him sick,he'll say they were 'off' Last week he actually threw up in the bin in the playground at lunchtime and was completely fine afterwards. It does become very entrenched and the anxiety is very real. I have just persisted with the sandwhiches and made sure i use exactly what he likes and he is less stressed about it but will try his best not to eat them, and now and then he will throw up. And by the way my son hates doughnuts too, don't know if it's the smell so the gooey jam that puts him off, again another sensory thing i would say It is a worry and i wish my boy would eat more things but gradually he has tried different things and hopefully he'll eat some decent food one of these days!

Summertime i'm with you on that one, I was called into school twice in one week to pick my son up and when we got home he was fine. I later came to realise he was so anxious about his sandwiches in his packed lunch (got to be a bread, ham and cut to his liking) that he was literally sick with worry. The smell of different bread or ham can be enough to make him throw up. It was sucha shame because he would start getting uptight before he even left the house in the morning and he was getting phobic about his lunch, i have never strayed from the usual brands of bread and ham again and he still trys his best not to eat them if he can get away with it but he's better at coping with it now.

Kathryn, Great point about the costs and one i shall use, thanks!! because it does seem to be allabout freeing up places and cutting costs. The woman at ISEA was fab and i'm glad i'll have some backup for the next round in March!