kirstie

As with Caroline my son with AS has plagiocephaly. I read also, after i heard the Consultant and her Registrar mention they had noticed the size of my younger sons head (recently dx ASD) and measured it. Apparently it can be an indicator for children with siblings on the spectrum (if they are also suspected as having ASD). And he does have a big head, and flattish at the back. Hadn't heard of that before.

<'> Elun, I understand the way you are feeling! I have 2 boys on the Spectrum (2.5 year old dx 8 weeks ago) and now my little 12 month old daughter is showing the signs too. I have voiced my concerns and flit from being desperate to know- as i was with the boys, to being really frightened of hearing those words, that confirmation again! But she has been referred to the Proffessor who dx my boys and that in itself is making me feel very panicky. It's kind of strange. I was so determined to get the boys diagnosed because i HAD to know, it was the not knowing that was driving me mad, but this time i feel i want to run! I am so scared she will be on the Spectrum too that its almost like if i dont take her then i can't hear the words. But deep down in my heart i know she is. But i can only appease myself witht he thought that if she is dx with ASD then we can use a very early diagnosis to her advantage! My boys are doing great, really great and i think it's because i've actioned so many supports for them and kept at it to make sure their needs are met properly- and i will do the same for her if its needed. I know this is hard for you, and ultimatley you will know what is best for your wee one. I wish you luck in whatever you decide to do. <'> <'>

How are things today Shona? Hope you're ok? <'>

Thanks so much ladies Having a girl is a whole new minefield in itself but the possibility of having a little girl with ASD, i have no idea about!! The good news is that she has been accepted, alongside her brother to attend a respite group run for early years children with additional and complex support needs. Its for 2 hours a week and she'll get 1:1 and play in the little group. These are trained development workers and are amazing. My son has a brilliant time there and has come on no end. They also have hydro pool, sensory groups, group play sessions, outreach. Today was her first session and she enjoyed it, as far as i can tell. When i walked in to collect her she didn't barely look my way, the only way i know she recognised me was because she started kicking her legs- but her little face was as indifferent as always. (she also ignores me when i call her name, it takes a lot to get her attention. Hearing is ok though at newborn screening test) Anyway, she's on the Paeds radar and time will tell i guess!

My son is 2.5 and can say two word sentances and lots of echolalia but he can sing a song. I find it fascinating that he can do this but not talk the same way. He still calls me Daddy so his language isn't always appropriate either, but that song twinkle twinkle little star makes me fill up every time! he can also add up to ten and is obsessed with shapes so can name them all pretty much.

Yes, they do this in Edinburgh in the Filmhouse. it's great because my son always finds the sound way too high and the gets scared going in when it can be really dark- makes him unsure of his footing!

Oh yes, we have this problem here!! My sons room is horrendous. All of the silly toys from McD's and the wrappers, crisp packets, bits of broken toys the lot! You should see his bed!!! I have no idea how he gets to sleep at night- all of his toys and bits are on there. For L it started when we used to go to Nursery. He HAD to pick up stones from the same place every day, put them in his buggy and sit on them he wouldn't so much as give them a second look once he's collected them but hell mend me if i took them out and tried to throw them away with him watching!! I am in the middle of a huge clear out of the bedroom and believe me its a mammoth task, but he goes to his Dad during the school holidays so i can do it without toys and rubbish being pulled back out of bags and being obsessed about all over again! I never saw it as an ocd type thing though, just an untidy boy who has trouble throwing things away and letting go. Hmm might try the recycle thing with him too!

I hope it goes well for you today. <'> Is there any way your daughters paed or consultant could help you out with this? Could SS contact them for any information relating to AS even? Sorry, not much advice here just wanted to send you some of these <'> <'> <'>

Thanks for the reply jo4themo, Aiden has just got his piedros (they're very smart!) and it is helping untill we take them off that is and he's right back up on his tip-toes. I think it's going to take a while for his muscles to stretch. His ankles also roll inwards (opposite to your daughter i think) so here's hoping they will help! I hadn't heard of any other children having piedro boots for the tip toe walking before!

Thanks for your replies. It's my daughter who is 12 months old. Her slow development is the same as my 2.5 year olds was. (hes been dx with ASD) (have an 8 y.o with AS) she was born 5 weeks early but HV has said she would expect her to be sitting up by now. She is sniper crawling so is getting herself about. Its not so much that it's her face, she's so deadpan and SOOOOO quiet.The laughing withour smiling is just another thing that has worried me. She doesn't put her arms out to be picked up, she doesn' hold her own cup by the handles i seriously think she is following broters and i am gutted. I was desperate for a little girl having 3 boys already- and i just feel if this is the case, it will be the straw that broke the camels back. Not that i love my boys any less, of coarse i don't. It just seems the worrying and wondering is endless.......... She has been referred to the Dr who dx both my Sons but i'm aware it's a bit early to tell if she is following their lead. How much is one person meant to take??

Hi David, Perhaps the child in him surfaces when he feels a little anxious? It could be a safety blanket to him? I know when my son with AS was anxious he would start to babble. I had no idea what he was saying but it was a retreat for him that was a comfort, so i let it be! I really admire you for trying to do the best by him, not many would and i think it gives great hope for those of us who will be facing their Son/daughter going into a workplace (iv got a while yet!). Just remember he is who he is and there is nothing wrong with being a bit different. Good on you though- your company could learn a thing or two from you about people skills!

Very well said!

Nope i wouldn't volenteer either!! We have a photo on the back of ours too, which isn't great i suppose for the likes of fraudulent use. As with Kathryn we got it really for the physical side rather than ASD behaviours. I am hoping his walking and tightness in his legs will get better with the boots and physio.

Hi Karen, I see what you mean! I hadn't thought of people breaking into cars for a badge, i must remember to bring ours indoors! We don't use it unless our Son is in the car, i wouldn't dream of using it unless he was, i haven't got the brass neck!

Hi Bads, I don't understand how people can fraudulantly (urgh sp) get a blue badge?? Maybe it's different in areas/cities?? We had to apply to the concessions people at the council and then we were given an appointment to see a Doctor who then assesses suitability from meeting your child (in our case) and hearing the history etc. We never applied for one with Lewis, as his walking was OK even if his behaviours weren't, and he had and still does have the tendancy to run for it and has no sense of danger on roads etc. But with Aiden- as well as his behaviours he has the problems with walking, i have to say it has been a godsend to us when we have used it! I have no idea how people could have the audacity to apply for a badge if they don't really need one. I wish we didn't have the need for one, i wish things were different. But that's not to say i'd change my boys for anything....but, well you know what i mean!!

Baddad, I get what you're saying, and as a rule if we're out we, wherever possible use the parent and child parking because of it's relativley close proximity to the shop/centre. But this day it was heaving and we did use a disabled bay with badge on full display. It was the ignorance of her remarks that riled me- she had no right. Also, my son is 2.5 and cannot walk very well so he does mostly go into his buggy,( but he likes to walk- even if he can't very well or very far ) where he does look very ' normal' . His older brother who has AS is now 8 and yes, i expect the behaviours to be far better as i just won't tolerate the screaming headbutting hairpulling biting meltdowns of years ago. (From him anyway) However, Aiden's understanding and language are far more delayed that Lewis's ever were so i do ahve the major meltdowns from the wee one- and having many bruises from a kicking screaming boy with hefty piedro boots on then i think parking as near as possible to the shops is a must for me. There is most definatley a need- probably why we were given the blue badge in the first place. Aiden has a dx of ASD. (you might remember we thought he had CP?? turns out his tight calf muscles and achilles are from tip toe walking so high up!!)

Hi Bagpuss, I was so upset my stomach was going like a washing machine! It took me back to the days of being chucked off the bus when my boy would scream. I haven't had to put up with that level of ignorance over the years since. Untill the other day that is. Yes his ASD is invisable but his walking isn't. He has piedro boots for his tight achilles and walking is a bit of a mission for him, as is his balance. I was hoping i'd bump into her in the shopping centre so i could have a quiet word but i doubt it would've made any difference anyway. And your right, the tuts and stares i've always had have been from the same generation. I too have been brought up to respect my elders and give them a seat, offer assistace if needed but honestly some of them can be so cantancerous (sp) and EXPECT you to move to make way for them or won't move to let you pass....i just don't understand that mentality or thoughtlessness!

I'm just writing this to let off steam really! The other day we were at a shopping centre car park, parked up in the disabled section (we have a blue badge) and this old (ish) lady was driving around looking for a disabled parking space and she was glaring at me and my husband. We just carried on getting the buggy out of the car and put the baby in the back and the woman came around again ranting and we asked her what was her problem and she said something about why were we parking there and we said we have a disabled child, and without getting the rest out (he was still in the car) she said, "Sitting in a buggy? it looks ok to me!!" and drove off (fast!!) not before i had told her to pee off (sorry, couldn't help it!) How ignorant can you get though?? My Son doesn't look any less 'normal' (hate that word) than my daughter, but once again we have the issue of the hidden disability and morons like that who pass ridiculous ignorant comments. There was nothing wrong with her gob that's for sure!! When we came out we saw she had parked up a few spaces down from us- i hope she had a good look at our blue badge the trout! I was fuming. I'd have happily shown her our badge if she'd have asked!! Some people!!

Just a query. Does anyone elses child wear piedros from tip-toe walking? My son walks as high up on his tip toes as he can that there is now restriction in his calfs and achilles. The physio says he walks on his metatarsal heads and dorsiflexion is 90 + 10 in one foot and 90 degrees in the left. I also have to do stretching excersises with him twice a day. The piedro boots are doing a great job of keeping his heels down though! His balance is slightly better too! I hadn't heard of this before with ASD and wondered if anyone is/has had similar experiences? Thanks. Kirstie.

I know, it sounds a little bit strange but it's just a thought i'm having at the moment. Does anyone's child do this? giggles or laughs without actually physically smiling?? (if you tickle them or they find something funny?!) I would be very interested to hear about it. Thanks, Kirstie.

Please can you pm me so i can avoid this 'person'. Thanks.

I too am shocked that the School has taken this approach with your Son. It seems totally wrong to me. I know very little about Lovaas but still, i think it is a very harsh and probably unrealistic approach to try to discourage Autistic behaviours. Afterall his Autism makes him who he is- it's part of him. It sounds rather victorian IMO. My Son also spins around now and then, and flaps his fingers (i noticed this was when he was feeling particularly nervous, a person he had never met before was talking to him ) and the light switches, oh my word he does this over and over along with the TV button and plug socket switching them off and on constantly. I had thought this was more like one of his 'fixations' as he seems perfect;ly happy before and when he's doing it i hadn't realised this was a stim!

Ok Ok, yes i know....but there wasn't much else on. I am totally disgusted at the lack of compassion and uglyiness (sp) in the 'women' in this programme. Theres a girl on there with AS and ADHD and good on her for doing ths horrible nasty superficial programme. But the others are being so bitchy and she can hear some of the things they say. Not one of them have really tried to understand her, or befriend her either. I could not be that person who could stand by and watch a person sidelined that way. She might not want people around her too much but the fact she cried to her Mum on the phone said it all. Rotten bunch of b**!@*s. I am not watching this again. What is wrong with people anyway?? Whatever happened to tolerance....ooops big word doubt many of them could spell it anyway!

Amanda, thanks for letting us know how you are. Everyone is here for you anytime. <'>

It really is something else! i hope Aiden will wear his glasses!!