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?

alice

i know the SENCO at DDs school is itching to get the EdPsych involved, but was told to hold back until CAMHS have gathered more information.

IIRC different LAs have slightly different dx process, ours uses 2 'opinions' from 2 different agencies to finalise a dx.

i might be wrong though

I am glad people are finding this useful - i know sometimes the only thing the I feel i can actually do is post on here.

Its very interesting about the transition thing. I really like the idea of giving him a list - both of were we are going and of what we need there - maybe making him mummy's helper (or will that increase anxiety?).

I also think we are going to have to do reward charts for not winging (he does it ALL the time and time out/taking away privileges etc - nothing is working). and When I say ALL the time - I really mean it.

I think that my DH worries that because we think DS might have AS - we will look for patterns to fit it, and make it sound like it to the ped - and I do see where he is coming from but at the same time, we are seeing signs that he might have it - so we can't ignore them.

I still vear between - "its us - we just can't handle him well" and "No - there is definitely something wrong here!" I think thats why I am so keen get a diagnosis - as like the rest of you said - then we KNOW and can work on getting him what he needs for his life.

The ironic thing with DS is that he is very bright and verbal and I think that a lot of people think that he is a dream child - whereas actually I would so much rather have a happy normal child, than a very bright one with issues - It makes me cry actually - I just want him to have friends and a peer group and be happy in himself - and the more issues we see developing, the less likely that seems - and then I get people thinking that its all about how "bright" he is.

Aliceinboots - DS's preschool don't see an issue and told that I just need to "show him who is boss!"

So he behaves perfectly there - and then I get all the anxiety/stress when he comes home!

I think that round here you do need an edphsyc as part of the diagnosis team - but am not sure - we are just at the pediatrician stage.

I get you, Bumptious

When you want a simple thing like getting out of the door less than an hour after you say you're going out.

When a meal is means of stopping you being hungry, not a ritual of humongous proportions.

When you want your DC to go to bed, on time, so you can actually have a cry without having to hide?

{{{hugs}}}

I wonder if my DD has quite severe problems. Although she has no meltdowns, needs no particular routines and is generally very content, she is very hard to engage socially unless it's on her terms. I know she understands everything we say to her does actually have some words, most can not be pronounced properly.
An issue with her hearing has been ruled out so that leaves some kind of social communication disorder doesn't it?

By severe problems I wonder that if she will end up being diagnosed as low functioning ASD because of her severe speech and language delay...
Truth is I really don't know and no one else seems to either..sigh.

aliceinboots we too have had pretty bad SL delay, but DS (3.4) is slowly catching up. They're now saying key issues are his social skills. He only communicates on his terms and has no interest in his peers (but has certain adults he adores). After two paed assessments we've been told 'traits of Autism, but not on the spectrum' and it's a case of watch and wait. It's really confusing. I hate being in limbo. My partner handles it much more calmly, which in itself can be infuriating as I feel I carry most of the stress and am the only one 'doing' anything (endless speech therapy, chasing NHS and private healthcare professionals, worrying, researching etc...). All very tricky.

cjn, your son sounds very similar to DD. The nursery have told me they are much more concerned about lack of social skills and her reluctance to engage with others than her lack of speech.

bump I dont actually think it will increase his anxiety any more than the busy shops do in the first place tbh. The idea behind the list we did for DD was that she had something visual to help her cope, and a beginning, middle and an end IYSWIM lots of children (on the spectrum or not) are visual learners.

aliceinboots The Ed Psych will help nursery to better understand and support your DD. The reports they write will only help with any DX they cannot DX but there is no question an Ed Psych's report will be useful.

Also regarding where about your DD is on the spectrum, imo i dont think she is low functioning, the fact that she understands lots is VERY positive and at this stage is more important than the speech.

GRR have loads more to say, but DD is not settling, ill be back later .

Hi again, I took DS for the requested blood tests today (plasma amino acids, genetic testing), thought it would be a horrible experience but it turned out not bad at all. Even though it was NHS there was no wait and the guy knew what he was doing, got the needle in first time and drew the blood very quickly and efficiently, by the time DS really got into full scream mode it was all over. Now waiting for further appts from development clinic.

We are still awaiting our ados app but I'm stuck between what I want the outcome of it to be. Part of me wants it to all be fine and show no issues whereas on the other hand part of me wants them to see the problems that we have with her at home. I guess time will tell at the app

Hello,
Can I join in? DS1 is 5yo, in MS school, reception year but only doing mornings so far. Has a LSA for the 3 hours he is in school daily. I've had concerns since he was a baby but they'd been brushed off as him being excitable, a boy, etc etc.

He has a diagnosis of Dyspraxia, so had an IEP when he started school but they raised concerns with a few weeks about his obsessions, lack of eye contact and other behyaviours. Had the ed psych and behaviourist involved, as well as O/T and asd outreach team from local special school. Now been referred in about November time to the asd tem at camhs, had a questionnaire and now on waiting list for initial appt to get diagnosis.

I am going into hospital this Friday for Surgery so won't be around for a bit. I just wanted to say good luck to you all with the various appointments and challenges you are facing.

I spoke to a friend who is a teacher who advised that at our next appt - they would ask us to challenge his routines and see how he coped with that - so I think once I am feeling better we will try that - Did any of you get advised to do that?

We had total meltdown a couple of days ago, because I wanted to go upstairs and get dressed (DH was there with him, so its not like I was leaving him on his own) - just don't know what to do for him some times.

Hi, can I join in? Just found the thread and wanted to join in, first time for me on any thread.

"BumptiousandBustlt" Good luck with your op all goes well and is not too serious.

So much of what every one has been saying on this thread has rung so true for me, everyone telling me DS will catch up when he wasn't crawling at 8 months, (only did so day after his 1st birthday). At 2 he wasn't talking so I got HV involved, and it's been a slow process since. DS in almost 4 and still hasn't caught up although has started talking. We haven't gotten very far as diagnoses as no one seems to tell me or know anything about anything. Only one who made observation about possible communication disorder was Community Paediatrician who has since left and 6 months later still waiting for someone to take over my sons case. I just want to get him all the help he needs. He is a happy child, loves being outdoors in the park, but hates shopping. Enjoyed numbers and letters but now has an obsession with dinosaurs. Has sensory issues. Everything is on his terms, does not follow any adult focused tasks unless it's within his interests or on his terms. Has total meltdowns when has to get hair cut or I have to go upstairs and get dressed. DH doesn't think he has a problem and is of no support. I so feel the stress is on my shoulders. DS has had 2 pneumonia's, croup etc. He is a lovely child but hard work.

I just realised I had better stop all the ranting. My question is how does one go about a diagnoses? So far only Comm Paed and SALT have been involved and it's not going anywhere. DS now at mainstream nursery for last 3 months and I am not getting a good feeling about his future at that same school, it's a very good school just something doesn't sit right with me.
Sorry about long message,

Any advise?

Needed to add, DS is walking, jumping etc just can't manage to go anywhere far without a pushchair / or being carried the rest of the way. He is about 18 months behind his peers.

School Admissions deadline is Sunday and am so worried about which school would be better for him. Like I had a choice.

Mumzzy - wow, reading your post sounds just like my son, even down to not managing to walk far so needing a pushchair. My son is obsessed with dinosaurs, meltdowns, hates shopping, it was like you just wrote all about my son. Actually made me a bit tearful.
Is there a SENCO at your childs school, or could you confide in his nursery teacher if you haven't already? Been to see your GP with concerns? If something isn't sitting right about the school, look around at other's in the area. We did this - first school just didn't have a good feeling about it -he was there for pre-school - so looked around and moved him. The new school has been amazing, started the wheels in motion for diagnosis and have done so much with him.

Mummzy - absolutely go with your instincts, you know him better than anyone. If I were you I would phone the new community paed and demand an appointment. If this does not work I would go through your GP. IME if the school isn;t concerned they will take a lot of persuasion to get anything done.

Good luck with the op BandB - hope all goes well

good luck Bumptious

and i agree, go with your instinct Mummsy - you can talk yourself in circles reading up this and that about schools but really when it's our DCs, we knw what's best

Yes, awaiting diagnosis for my five year old (and probably me too, but that's another story!)

DS behaves like a toddler, in many ways, his speech is poor, he is obsessed with super heroes, dislikes loud noises, chews and licks things in class (his sleeve is constantly wet!), doesn't dress himself, ultra fussy with food.

Positives, doing ok at reading (not brilliantly, but he will catch up), good at maths. 100% toilet trained (including at night)

Oh, and he doesn't fall asleep until 10pm every night, forgot that one!

Thanks all, took your advice and am going with my instincts. Has been a busy day but after speaking to 2 mothers from different schools who's DC have SEN (or should have in one case) am now more relaxed with choice.

Gottalovecosta - I can see why you are happier at new school, seems progress has been made in a term. There is a SENCO, I requested meeting the week ds joined school, but didn't feel she was very forthcoming especially at 2nd meeting, once again at my request. So became conscious that something was amiss.

How is everyone doing? I had my surgery and DS behaved perfectly while I was gone I say because it was clearly a reaction to stress - once I had been home for a few days he started playing up again - which at least shows he is feeling secure again.

His pre-school have written a report for the pediatrician saying that everything is fine as far as they are concerned, and I am of course happy that everything is fine at pre-school but it does make me feel really crap for struggling with his behavior at home.

Its getting harder to get him to leave then house - which is not good and I realised that I have started modifying my behavior and plans so that I get more things done while he is at pre-school to avoid the stress of taking him out - whereas before I used to plan to do these things with him, as they got us all out of the house.

Also I have been told no appointment till the end of March now - which is more than 7 months after last appt. I know its par for the course but I really just want some answers. (which I also know I might not get ) but I just want to DO something!