Advice on what next ...

(5 Posts)
user1486943713 Mon 13-Feb-17 00:00:23

Hi Everyone

I'm new to the forum although i have read many posts. I'm just looking to see if any one can point me in the right direction on where to go next.

My son is 9 ( 10 in July ) at the minute we have no diagnosis although sits on the fence for a few things
Dyspraxia he scored 16th on the percentile and 15th is the cut off
Learning disability is based on the IQ 0f 70 and under he scored 72
He has Autistic traits but not enough to diagnose
His visual perception is coming out at age 4 years
He is roughly 2 to 3 years behind his peers with learning
He has a weak working memory
His behaviour at home and school can be volatile with no noticeable triggers

The consultant is wanting to discharge us and not diagnose anything even though he struggles badly at home and school.

I am wondering if any of you have been in the same position and finally got answers to help your child ?

OP’s posts: |
tartanterror Mon 13-Feb-17 22:27:00

I assume you are under CAMHS? I'd say Step 1 is to ask for a case review - put down all the things you have listed above and say you think it discharge is inappropriate. A friend of mine has done this recently and CAMHS confessed they had had a staff problem which compromised the process. They offered a full reassessment! Failing that ask to keep the referral open and re-assess in 6 months (or 12?).....

Also in our area they run a post diagnosis course. There was a mum on our course who's DS didn't have a diagnosis but by being on the course she learned a lot about ASD traits and was able to back to their next review with lots of evidence to support a diagnosis. Can you ask to go on a post diagnosis course and do the same as above? Or do a lot of reading? Someone on here advised me (for an EHCP but diagnosis is the same) evidence evidence and evidence. You as a parent are the one who has to provide the evidence for the professionals to make a diagnosis. Keep a diary, keep notes, keep records of discussions with teachers etc. So I'd say that is step 2.

Step 3 - your DS clearly has SEN and if you have reports to back up the list you have written above, you should apply for an EHC Assessment and send in all the reports/list of professionals you have. Whether it is ASD or something else, you should be able to access help in school

Good luck

Step 2 is probably to write a letter to CAMHS and put down what you have listed above.

knomi Thu 16-Feb-17 20:36:43

Apologies for the late reply
Yes we are under Camhs - currently waiting to be re referred back to Cyps

ECHP frighten the life out of me - i have no idea where to start. The school would support and i have dropped it in to conversation with them but nothing has come of it. They have put in urgent behavioral support due to a few incidents a couple of weeks ago. My biggest worry is when he goes to secondary school next year.

tartanterror Thu 16-Feb-17 21:59:51

Next year as in 2017 academic or next year as in 2018 calendar?
Our school have been vague about our whole situation so don't rely on them.... if they haven't acted too well so far they will continue in the same vein! Even though on SEN Support, they were surprised that DS got a diagnosis and then later shocked that the LA agreed to assess when I applied for an EHCP.

I reckon that we got the EHC assessment because we have letters from professionals supporting an EHCP to manage transition to secondary school in a few years time. (It's the elephant in the room isn't it? health professionals talk about transitions between classroom and lunch hall, or between activities........ why not THE single biggest educational transition even for NT kids!!!!????). Get in touch with all the professionals you know and ask if they will write a letter to support an EHCP so you can select a secondary school based on need rather than distance. Then put those letters in with a covering letter.

6 months ago I was also clueless about EHCP but got lots of help from lots of other mums. If you want to PM me I can send you a copy of the letter I used so you have something to cut and paste into smile

knomi Thu 16-Feb-17 22:17:31

It will be Sept 2018 he starts secondary school.
When we went to see the consultant in Dec 16 she suggested we hold my son back a year at school - he is year 5 so i doubt it is possible and it wont do his self esteem any good.

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