Firefly
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Posts posted by Firefly
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Firstly I would like to thank both of you for your replies to my post. I've looked at the Yale link you put up Sheila and I've also done a little more research and I'm beginning to see that PDD-NOS could be likely. It's getting to a cruitial stage at school as he really can't sit still to do his work and finds writing very hard. He can read well but his eyes seem to flick over the page too quickly for him to actually progress with reading for any length of time. He says school is boring but I think it's probably because he finds it all too frustrating. He's only just turned 6 and I hate the thought that he's against school already! My husband and I are seriously considering home schooling or at least looking into shared management where his education would be split between home and school. I already believe he has TS as he's had motor and vocal tics since he was at least 2 1/2, he shows signs of ADHD and anxiety so it's a lot for a little person to deal with.
I'm going to do further research into all this and hopefully we can put together a learning plan that will work for him.
Thanks again for your support, I'll let you know how we get on at the paed appointment.
Cheers,
Kathy
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Thanks for everyone's input here. Just a follow up really and possibly a few questions about PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified). Our little boy is doing so much better at school this year, his teacher is wonderful and a stark contrast to last years teacher who wouldn't make any allowances for him at all. She's intuitive, caring and thinks outside of the box. This year he is allowed to tic, talk in a funny voice and also vocalise, although she does try to redirect him when he's a bit too vocal. He is much more relaxed at school so his tics are more evident as he's not trying so hard to mask them. This seems to make home life a little more settled too! However he finds it very difficult in certain situations, usually when he's in a large group. The Behaviour Management Consultant for our region observed him the other day and over a three minute period saw tics, vocalisations and restlessness which gave him no peace at all, it was also distracting to the other children and his teacher. They've now decided to create a special education plan for him which is amazing. He's going to have a special needs teacher twice a week and a senior child come down to take him to the library to look up his 'special interests' at least once a week. Once a fortnight the Behaviour Management Consultant will also come by to check on things.
I can't tell you how relieved I am that something is finally being done and our little boy is now getting the help he needs. The only question I have is really about PDD-NOS. I've tried the Autism/Asperger side of this forum but have had no response. I'd not really looked into this before as I put his behaviour down to TS but now realise that tics don't explain enough about what's going on with him. The Behaviour Management Consultant brought PDD-NOS to my attention and after research it seems quite likely to me that this maybe what we're looking for. Does anyone else have any experience with this? Our little boy communicates well, makes new friends and usually gives good eye contact. On the other hand he is very highly agitated at times, does not react to change at all well, has 'special interests' that will usually calm him down, reacts very quickly to stimuli, highly emotional and incredibly impulsive which can get him into a lot of trouble.
Any feedback on this would be gratefully appreciated as the school want some sort of diagnosis to get funding for him (TS is not recognised as a disability here) and he has his next paed appointment in less than two weeks!
Thanks again,
Kathy
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Hi,
I've been on the TS side of this site and, until recently, thought that the behaviours etc that my 6 year old son displayed were due to tics and nothing more. I've completed numerous forms regarding Aspergers and these have always come back 'highly unlikely' so I dismissed this as an option. Our little boy has had motor and vocal tics since he was 2 1/2 and although he's seen a paediatrician and phychologist, he's yet to be diagnosed with anything.
He's always been the 'difficult' child and his emotions run very high and close to the surface whether it's to laugh, cry or become angry. He's incredibly impulsive and I spoke to his teacher last year (his first year at school) to explain that he had certain qualities that would make it difficult for him in the classroom environment but this was not acted on. Needless to say he had a tough time at school, was constantly in trouble for behaviours that I really didn't think he could control very well but felt powerless to help him as I didn't understand what was going on within him. He communicates well and will give eye contact most of the time and is sociable and seems to make friends. All these factors steered me away from any form of Autism. However, this year at school he has a great teacher, she's incredibly perseptive, understanding, patient and open minded (all the things his last teacher was not). In the first term he had an incident with another pupil and was suspended from school for two days. As parents we understood that he needed to be punished but the suspension seemed a little harsh but that a whole other story! Anyway, before he went back to school he met with a behaviour management teacher who spoke with him briefly and then spoke with my husband and I in depth, she then went into class to observe him. Over a three minute period she noticed that he was unable to hold a stable position, blinking and facial tics, calling out univited comments, using funny voices, slapping knee, bumping into other students, grimmacing, closing eyes, shouting out, saying sorry over and over again then saying 'on the page and 'I'm tired' and repeating the teachers words.
After this episode we're happy to report that something is finally being done to help our little boy reach his true potential in class. He's a bright boy who would otherwise get lost in school if things aren't put into place to help him learn. My question really is about Pervasive Developmental Disorder - Otherwise Not Specified (PDD-NOS). I hadn't heard of it before the behaviour management teacher slipped it into our conversation. Does this seem likely with our son? He does seem to be oversensitive to stimulation and also unaware of the behaviour that he exhibits. He's always worse when there's more people about, such as in the classroom, although at assembly he seems to be able to conform and sit quietly (at least most of the time).
His teacher gets him to use the computer when she instructs the rest of the class as he's quite disruptive at times and will or cannot focus. This usually settles him down and then she can give him the instruction. Once the class is split into groups he usually quietens down and can join in well. His teacher has set his desk slightly away from anyone else as he keeps grabbing at other childrens work and pens. She allows him to take toilet breaks quite regularly when he's struggling and she notes that he's managing this quite well.
I'd love some feedback with this as he has another appointment with the paed in a couple of weeks and the school are wanting a diagnosis (for funding I guess) so any help would be appreciated.
Cheers,
kathy
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Hi Chap, thanks for the welcome. Where are you in Oz? I did look at the TS Association Australia a while ago and they called me back and gave some great advice, in fact it was their advert on TV that prompted me in the first place to look into TS more regarding our little lad. I haven't looked for a while as they didn't have anything new for a long time but will look again now. It's nice to see some fellow countrymen on here and hope to chat with you again soon.
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Thank you so much CSP and Chemar for your replies, it means a great deal to me to know there are people out there willing and able to help a little. I myself don't believe he has aspergers as he's very sociable once he gets over his initial shyness. That being said I don't know enough about it so will take your advice and look through the information on this site. I have completed a few forms to determine if he has Aspergers and they've all come back as 'Highly Unlikely'.
I had a quick Google at the book and movie you mentioned CSP and managed to see Brad Cohen interviewed by Oprah a few years back. It was very moving and I'm hoping to either get the book or see the movie myself. I'm really looking forward to getting some answers here, mostly about behavioural problems at school as the tics don't seem to be causing too many problems for him at this stage. I really want to understand TS and also more about OCD and possibly ADHD as my son's paediatrician thought some of the tics were actually related to ADHD and not TS (he's still not been formally diagnosed). I can't see this is the case but I'm here to learn more. Thanks again for listened and I really look forward to hearing more from you.
Kathy
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Hi everyone, this seems like a very good and active forum so I really hope I can get some answers here. We live in Australia so TS is not actually a recognised disability so unfortunately we can't seem to get any funding for our 5 year old boy at the school he's at. My husband has TS although he's never been diagnosed, it's just my assumption from motor/vocal tics that he displays. Our little boy was 2 1/2 when we first really noticed that he had a tic he'd sort of shrink into me and pull a face and growl at people, then started shoulder shrugging.
My queries are really trying to understand the difference between TS and possible OCD. The principal seems to believe that my son could have Aspergers but I feel that they want to go down this route as they'd get funding for this but wouldn't for TS. He does display behaviours that could be explained by Aspergers but then again he communicates well with others, looks you in the eye when talking and plays well with his peers. Could this still be a mild form of Aspergers? I'm also not too up on OCD but feel this explains him a little better. He suffers from anxiety and recently didn't want to go camping as the last time we went our older son was sick. He now has a phobia of people or himself being sick which has thankfully lessened in recent weeks. He doesn't seem to have rituals but is very emotional and will be the first to laugh, first to cry and first to fly into a rage.
Behaviours he has are talking in a silly voice which he's done this since he could speak, repeats things either what he's said himself or what others say and also practicing things until he gets them just right like whistling and clicking his fingers. All these things got him into trouble last year at school and I really need to understand if they are tics.
I'm finding it hard to get answers as there's a real lack of understanding in this country about TS even with the peodiatrician and doctors who just seem to read what's in the books and don't seem to look beyond. If anyone can shed any light on what could be going on with our son we'd really appreciate it. At the moment his tics are quite noticeable and his vocal tics can sometimes be continuous. He sort of does a squelching noise and was even doing this when he was eating yesterday.
Thank you for any input you have.
Kathy
PDD NOS
in Autism Spectrum Disorders
Posted
It's something I'll certainly look into, although looking back through my husbands family there's definately some history of tics in both him and his mother. I've heard of PANDAS but not PITANDS so I'll look into both and chat to the paed about in when he has his appointment on Monday. Thanks for your input and I'll let you know how we get on.
Cheers,
Kathy