Anyone else interested in a support thread for those of us waiting for a diagnosis?

[BumptiousandBustly]

I have not been on this board long, so I hope I am not stepping on any toes or anything, but there seem to be a few of us out there who suspect that our DC have issues but are enduring long waits for a Diagnosis, so I was wondering if anyone wanted a support thread that we can all vent on?

I will start - DS is 3.10 - and we suspect Aspergers. we saw the pediatrician 3 months ago - for lack of growth and delays in socializing and were told to come back in six months, but we now have a lot more concerns.

On the advice of our health visitor we phoned and asked for an earlier appointment - but were told no - so we have to wait till March to see the pediatrician and hopefully get the process started.

I go between being absolutely convinced he has some kind of ASD and thinking that actually he is fine and I am just thinking that to cover my own bad parenting/lack of control.

Briefly he has issues which include - a bedtime routine that I could tell you word for word (and an identical one with DH even though its never been discussed). He will scream at loud handdryers, he can't cope with anything on TV where anyone is upset/frightened etc. He can't cope unless he has a specific time when TV will start again. He wants a plan for the day - (what will happen and when) from when he wakes up in the morning, he will get very hyper around bed time.

Anyone else want to join me for mutual hand holding, support and sympathy as we wait to hear what the docs think is going on with our DC?

Hi everyone.,
I havnt read all the posts thoroughly, but as far as i can tell, most of your DC's are younger than my DS. he is 8 next week, we have been fighting for a DX for over 2 years now. We suspect ASD not only becuase DH brother has ASD, but for his mannerisms.
He does kind of overlap ADHD and ASD, but ASD seems more likey.

He has eventually been seen by OT - 5th percentile motor co-ordination difficulty, not bad enough to be DX with actual disorder. Hypermobile joints including fingers/thumbs/hands. Associated movements with gives him an "awkward" look. Discharged as theres nothing they can do for him.
SALT - expressive language delay with an age in this area of 5.2 - 5.5 (over 2 years behind) but he passed the abstract language with 79% (pass rate is 80% so they said he might as well have passed) and also the phonological awarness with flying colours...so this unfortunately goes against our fight for ASD.

He already has had 3 sets of grommets for glue ear, that started when he was 2, he will be discharged from ENT this year fingers crossed as his last set are now out, and his hearing is fine.
He also got DX at 15months with a VI - Nystagmus. He doesnt wear glasses, and actually has better than 20/20 vision, but the strain it takes to focus can leave him tired and groggy, and will only become more apparent when he is older and expected to read/work much much more for exams etc.

WE are currently waiting for the latest referal to pan out. DS's case was refered to the BSCIP (bolton social communication and interaction panel) these people get together once a month and discuss cases that have been refered to them, to decide whats best to do.
The discussed his case last month and decided they didnt have enough information so have requested the local outreach team to go into school to see him. I requested this last year, and the stupid SENCO told me they had refused to come becuase "they didnt see a need" WTF!! anyway, hopefully now she cant fob us off anymore!

anyway, this is getting far too ,long, so i will leave it for now, and catch up with you all soon xxxx

Angel

sorry to hear you have had such a long fight for diagnosis - we are just at the starting point - wondering if we are just getting it all wrong for him - but also seeing behaviors that don't seem NT to us - have you heard anything yet? We have been told that we won't get an appointment till the end of march - so just waiting.

Hi would love to join your thread. The waiting game is horrendous! My ds is 4 and we were alerted to probs by preschool. Have only had one appointment with community paed and had to chase that up and still waiting for the dreaded bloods to be done - although did discover that our referral was never made as should have been.

We think from what we have been advised and looked into most likely to be dyspraxia and aspergers. Have since turned into completely obsessed overly pushy mummy! Poor ds is probably exhausted - I know that I am wearing myself out lol. But just want all sorted before school so can get coping mechanisms in place etc.

Have already decided put schools down wrongly on application but luckily phoned admissions and they have said ok to change application still. Despite deadline passed. Thank goodness. Have nagged dh to point of madness over going private - hope he never reads this as would never admit that to him lol Etc etc

However, have just had a good day. Received copy of letter from comm paed to gp re her observations and her next actions. Everyone we phoned last week phoned back today! And appointments made finally for health visitor to come and see him and for someone to observe ds at preschool from educational service for disabilities. Also ds's key worker at preschool advised us today that she is going for specialist training just for ds so can help him more. Yippee!!

Bad part of day - took ds to new music teacher for lesson at her house. Thought may help with dyspraxia - melt down throughout! why did I not think about both a new environment and a new person being overwhelming along with the attention being on him. However teacher lovely and was aware may happen.

Just had strange day. Ds got an appt through for his bloods. Ds also had an assessmentfrom someone from educational service for physical disabilities but must have been having a really good day. He actually managed to catch a ball and to stand on one leg. He even managed to hold a pen and draw a blob with legs. There was no melt down at meeting someone new. Preschool completely shocked as well. Anyway all she could say was that yes he does appear to have problems with his legs and moves strangely but no idea why. Today he seems to have had an exceptionally good day. Which is itself is fab but did it have to happen on assessment day lol!

hi my son who is 2y 10m old sounds so similar to many other children written about on this thread - he has speech delay and appears to lack understanding when spoken to. He has started to make progress ie joining a few words together for example adding the colour to something instead of "car" it is now "red car" and he does understand a few simple commands like sit on your chair. He is in his own little world and his eye contact with prople he doesnt know is non existant he just ignores them like they arent there! He is such a loving merry little boy and has a gsoh. I understand completely people whos husbands are in denial that anything is particularily wrong, it makes me feel terrible to believe in myself that my son has something wrong with him when my partner makes out im being very negative, alright my son is making very good rapid progress for him however he is completely different to other children his age or even younger now and my partner does not see that.
I was wondering if anyone elses child repeats dialogue from TV shows. I have stopped my son watching TV altogether and now he seems to be improving greatly, but what really bothers me is that he can repeat TV shows from 4/6 months ago! Full conversations with different voices and everything like a complete echo of the programme. He will be awake in the night eg this morning i got up at 4am with him as he was just lying in bed staring into space repeating dialogue from a cartoon at the top of his voice! And he carried on when we went downstairs! Hes not sleep talking he is wide awake.
PS Im so glad to find a thread from people in the same situation as us. I love my little boy to pieces but want to know whats wrong asap so I can help him the best I can x

well.....Outreach have been out to see DS yesterday. got NO feedback from school. no-one stopped me to tell me they had been! if i hadnt asked the office lady that morning, i would still be none the wiser! i just happened to call into the office and mention that i know they were due out at some point, and she called back later that morning to tell me they were going in THAT afternoon! what luck that was!

anyway, since i have NO idea how it went, and he was having a good day at school, its now waiting again!! ARGH!!!

Toni27 my dh is in complete denial if I didn't have letter from paed stating he has hypermobility and significant motor delay I think he would convince me that I've made everything up. Sorry can't advise re the tv program thing. Can say though that we do have to banish things for a while as obsessions form and then get no social interaction from ds. Used to laugh and say he's becoming a teenager early. But banishment / limiting things does help in our situation once you get past the tantrums.

Angel, why do the assessments take place on good days. Sounds awful but wish he'd been tired that day but thought would react very badly when meeting new person so slept in his bed the night before so could settle him straight away when had night terrors etc. Pants! Lesson now learnt and will be following normal routine on nights prior to next appointments. It's not good trying to sleep in a toddler bed.

dont know if this is any help, and im sure many of you will have tried or be doing this already, but i have found that adding an adult strength omega 3 capsule to my sons petit filous yogurt every day makes a big big difference to his responsiveness, its like if he has it, his brain is more alive, he is less likely to go into his own little world. Things like being tired etc still affect him of course but i swear he is more vocal and sociable if he has the fish oil. Hope this helps someone x

spiderman, its always good days when they "need" to be bad ones eh hahaha....i would upgrade the bed if i was you hahaha,,
regarding the TV....i think that its good in a kind of way, because my DS has learned some phrases from tv that i dont think he would have picked up from just us. or at least not even had a basic understanding of the connnotation of them.
somehow they "get" what they mean from a cartoon, rather than real people., IYGWIM
although sometimes this backfires i must admit...with some things DS still doesnt get what it means, but uses it in situations which he thinks are the same as what the character would say it....funny and embarrasing sometimes but mostly just makes me chuckle lol

toni...i will look into the omega 3....thanks xx