how do i help my ds?

[emd4]

hi havent posted on here before, so please be gentle.

my ds has always had difficult and sometimes odd behaviour since he was little. i wasnt able to take him to baby groups because he was aggressive towards other children and destructive etc... anyway, gp kept saying theres nothing wrong so i thought i was being sensitive.

when he started preschool they called in early years. after assesments his report came back as saying delayed on average around 18 months- which was a major shock. they started helping with behaviour therapist (we had two meetings) and some helpful tips-visual timetable etc. the main problems being social problems, aggressive behaviour, tantrums, obsessions, major lack of sleep, and not quite being where he should be developmentally although still a bright boy.
In May we had the first appointment with the child development paediatrician. the appointment was horrendus, i left in tears, she basically said that although there are issues theres nothing she can do and he'll probably grow out of it. i was not listened to and she spoke to my mum for the entire time even though i was the one asking/ answering the questions (HE IS MY SON!) one question was 'can he write his name?' 'ummm no he can barely reconise his name' 'oh im sure he could if he tried!' she said there would be a multi team meet with me senco early years etc - never happened (i rang again and again).
anyway so where we are now is that early years (the only people who have been helpful) are no longer involved as ds is in reception now, so no more support from them, the paed has left me with no support in place for me or school, we have a meeting in november with her at which point im pretty sure she'll want to discharge him!
he absolutely hates school, hes biting and having tantrums, being sent to the head teacher, wondering off during playtimes, refusing to eat at school etc.
the behaviour is getting worse rather than better, melt downs are happening much more at home too.
im meeting the school this week, they wanted to set up IEP but cant without report from paediatricain with guidelines which she hasnt given.
i dont want him to hate school, and i really dont want him to end up getting suspended because theres not support in place to deal with the porblems that are (i dont think) his fault.
i have an appointment with the gp this week- hoping to get a referal to a new paed, but not sure how to go about it, dont think i can face getting sent away as if its my fault again.

anyway just wondered if anyone else has gone through anything like this?, any tips?, advice?
what should i be saying at appointments to get some suppport for him?
what sort of help referals should i ask for?
any help wotsoever appreciated really.

thanks

I think theres probably loads of people on here with similar stories to this. You are not alone, you have come to the right place for support and lots of shoulders to cry on if you need to. In my experience the only way to get heard is to shout louder. You are your sons advocate and his voice you will have to keep on at school and at the paeds. Sorry you might not want to hear that but it is the only way, You know your son and you want the best for him.
Keep a diary of his behaviour and do some reading to back up your observations. If you don't get any joy go back to your gp. Has he had a speech and language assessment, if he hasn't ask for one to check on his understanding etc.
Someone else will be along with more advice I am sure. .

I'm sorry that the paediatrician has been so unhelpful. Unfortunately your experience is far from unique.

Has your DS ever been assessed by an Educational Psychologist? I would ask the school to refer him asap as tbh paediatrician reports can be helpful but they do mostly focus on the medical/dx side rather than detailing what support is needed in terms of specific strategies.

I would also contact your Speech and Language Therapy dept, and refer/re-refer your DS. Stress his difficulties to them wrt socialising/understanding instruction/language delay etc.

I think you have the right to a 2nd opinion, but if you are sensing the GP isn't going to be agreeable can you ask the school to write you a letter. Sometimes having a piece of paper to wave that isn't just your opinion as a parent goes a long way (it shouldn't but that is the reality). The school nurse may also be able to refer on if you meet a brick wall there.

If you can stomach it, write a letter of complaint to the original paediatrician summarising what was agreed (e.g. meeting) when you tried to contact them and lack of response. Also the current situation with your DS at school.

www.ipsea.org.uk and sossen.org.uk are both charities that can give you free advice. they can be hard to get through to but do persist (I have found SOS!SEN the easiest to get through to).

Hi emd, and welcome!
I think you have come to the right place; there's lots of people who have been through similar and plenty of experience and good advice and support.

There's a very current thread from someone in a similar situation with a DS of similar age, and trying to get a statement, which is what you need for him to get help at school. have a look here

To be told by a pead that your DS is 18mos delayed and they can't do anything to help is total bullshit. don't leave the GP's office until you get the referral to another paed. tears if you have to, but don't leave the office until you get that referral.

:) < big friendly smile and a cuppa>

first time we started the dx process we were td ds would mature and he was just sensative!

Sencond time we got a dx :) ( there was no question about it.. Dx process took a bit longer though because there were other crossover issues as well as the asd)

keep a diary.. See if school will back you up with regard to the problems they are seeing.
Get video of any unusual behaviours or meltdowns if you get the time to.

thankyou so much everyone, its just nice hearing theres people who understand :)

i will try and be strong with the gp and make sure we get a referal to a new paed.

i didnt know the schoolmcould refer to a psychologist. i'll mention it to them at the meeting. problem is i think theyre relying on the paed sorting out referals etc and well thats not guna happen!

i'll start keeping a diary of his behaviour.

its been upseting watching my daughter, 16 months younger, gradually overtaking him in development and feeling like i'll have to wait until he's sooo far behind that he cant catch up before he gets help.

weve had no referals from paed, early years said psychologist, ot, speech and language, might be useful but everythings just been left.

im just hoping that i can do something at school before hes got it set that he hates it for the rest of the years in school.

ive not asked for a diagnosis once in any of the meetings- only support/ how to deal with problems, but it seems like they dont do anything until a diagnosis is given (seems crazy!) problem being from everything ive read/ heard he doesnt fit 100% into any particular diagnosis, just lots of little bits from different things that add up to a bigger probelm! and a stressed mum!

thanks again x x x

Ed Psych's work for the LA so the school should have access to one. The school may be waiting on reports from the paediatrician to strengthen a request for a Stat. Assessment for a statement of educational needs (that IPSEA website gives lots of info on what that is and involves).

chase everything up in writing. It is a pain but you really need a paper trail if anything is to get done. Most services are under-funded and under-staffed, so unless you fight your corner it is all too easy for referrals to be lost/dropped off waiting lists etc.

I really relate to what you've said, the first paeditrician I saw was so patronising I ended up in tears (I also had a newborn so was a bit weepy anyway). She told me my son was definitely not autistic as he waved to her(!) and then rang my HV and said I was depressed and causing all DS1's difficulties. Fortunately my HV was supportive and when we got to see a different paediatrician we were referred to the dx team and DS1 was then dx with ASD.