Hello everyone - sorry this might be a bit of a long introduction! I'm a mum to 2 boys - my eldest is 9 and displaying many symptoms of ASD - and has been since nursery school but i am getting nowhere with getting him assessed! just what do i have to do!?... here is some background...
while i was growing up, my brother (now 22) was diagnosed with Asperger's around age 7 - he was statemented and attended a non-mainstream school after primary school. my mum emigrated to NZ with him when he was about 16 in order to help him achieve a basic level of education as he hadn't got any GCSE's here (the NZ education system was way more focussed on vocational achievements etc which he wanted to persue) -anyway, having grown up with this i don't know whether this has made me more aware of some of the issues with day-to-day life he had and now can see in my son...
so my son...
As a baby he was always very passive, so silent -never babbled, i could literally take him anywhere and do anything with him and he'd be happy enough. He would be happy at nursery -just dropped him off and he'd wave goodbye when prompted etc. at his 'parent's evenings' they would always say that he had problems talking with adults, would avoid eye contact and never do things he was asked to do e.g. threading a bead on a thread etc - and yet they knew he was capable of all of these things if they watched him from afar. We didn't have any of these problems at home so just assumed it was shyness.
Language wise - he had delayed speech -at his 1 year to 15 month check (i forget his age now) he was referred to Speech and Language therapy (SALT) as he was using minimal language but what he did use were quite complex sounds. He refused to call me mummy so instead i was daddy for months (assumed it was a phase). He does talk normally now though, although does still see SALT at school (well, actually just discharged really as they think his current needs are being met by the school and they can't add any more).
Now (age 9) he still has complete meltdowns about haircuts, nail cuts, getting dressed in the wrong clothes, doing something he is not expecting, wrong smells, and major obsessions with certain toys/games (the obessions have changed over the years - we've been through thomas the tank engine, sonic the hedgehog, angry birds, and now minecraft) but we know all there is to know about every aspect of these obsessions, everything we talk about, all of his school work and homework MUST be related to these in order to get his attention and engage him. Clothes must be soft and not 'spiky' -they can't have elasticated ankles, they have to sit on a particular part around his waist, tops must be baggy and not in any way snug to his arms - never ever long sleeves unless it is his coat. We have had the same school shoes every year since he started school -if next discontinue them i will cry! He doesn't feel the cold or the wet - and if he is very anxious about things then he wets himself a lot -day and night. He will happily sit in wet trousers and pants -and then have a meltdown if i say he can't sit on the sofa until he changes. (we have seen a urologist about this, and he does have a bladder problem meaning he retains urine instead of voiding all of it -but we got discharged as i was late for an appointment with him...i'm awaiting re-referral).
there's probably more i could tell you about him but i forget now -until i read others' posts and find myself nodding along!!
so far - he is on the schools SA+ (school action plus or something) and so they do provide him with IEPs and individual support -last year he did quite well and parents evening made me cry with pride -he was almost level with his peers which was definitely progess on the year before... this year, he is hating school again, and i have found letters he has written saying he wants to die and 'please kill me' etc. He has some social communication groups which apparently are good (says the school) -they talk to the group about 'idioms' among other things (he has explained what they are to me - he says 'mummy it's like when people say it is raining cats and dogs, it's not actually raining with cats and dogs' -well apparently that's an idiom?). He has an ed psych who is very concerned about him - he is in the bottom 1% for several aspects of language and social behaviour (i will find the report if anyone is interested -i've forgotten now -it was ages ago).
We also see a commnuity paediatrician every 6 months (well, actually more like 8 months each time the appointment comes around). An occupational therapist has also seen him in school and has rang me to say she has concerns -mainly with sensory issues re noise and touch. [although interestingly he is very very clingy to me -constantly kissing me/asking for kisses even at innappropriate times such as in the middle of cleaning his teeth or eating etc. The other evening he said he counted to 167 times he kissed me]. He also sniffs me and has issues if i smell different (e.g. different hair shampoo/hairdressers etc). he will just stand and flat out refuse to enter someone elses house if he doesn;t like the smell of the place e.g. from cooking etc.
basically every professional he sees says he needs assessment for ASD -he has a community paediatrician, SALT, OT, Ed-Psych, and the SENCO - so where do i go about getting it!??? no one is willing to do anything! we have been seeing a different paediatrician on every appointment for the last 3 years - every time we start back at the beginning (in our 15 minute appointment). a year ago i was offered melatonin for his sleep issues (getting to sleep not staying asleep) - i declined then because i wanted to try a few more behavioural techniques before medicating) but then when i gave in and saw the next paediatrician she refused to give it to him unless i could provide a sleep diary! so we are now a year down the line waiting for another appointment to address this! I was also given a GARS and GADS form to fill out for assessment -no idea what i was supposed to do with it so me and the teacher have just filled it in ourselves without the help of any professional at all. if this is what they are using as the official assessment tool then i am going to be very angry! I have posted it back to the health centre for the attention of the community paediatrician -however it will be another locum as the one we saw last was leaving too.
the nice guidelines talk about having someone as a lead professional - who would that be?
what kinds of questions should i be asking at my next appointment? (january)
i know none of this will change my son -and i don't want it to because i love him for the way he is, but i just want to be able to understand whether it is a condition or if it is just my bad parenting or something (which is how i am made to feel by friends etc when he is stood at ther door crying because he doesn't like the smell of their house!; or when he completely ignores people/family when they speak to him).
really sorry this is long - needed to get it out so sorry!
