New here - any advice or can anyone relate?

(4 Posts)
MrsJ0612 Wed 13-Apr-16 19:00:45

Hi all,

My dd is 4yrs 3 months. She started part time nursery last September and from the first day I noticed how the other children were more "advanced" than her. She was referred to speech and language therapy who did an initial assessment in October 2015. It was decided she would be referred for a hearing test which happened in January. The test showed she had hearing loss due to glue ear. So we were then referred to ENT (Seen in March) who said she could have a hearing test trial. Last week we were seen by audiology who wanted to retest her before fitting the hearing aids. The test showed her right ear had normal hearing and her left ear was better than previous with slight hearing loss. It was decided she was "probably" congested at the time of the previous tests and audiology would see her again in 3 months but other than that there was no more they could do for her.

So I called speech and language therapy who told me she was on a long waiting list and it could be months before she is seen again. DH and I decided to try and find a private therapist as dd is due to go to full time school in September and it's already been going on for months we are really worried she will struggle or not be ready for September.

Today we had an assessment with a private therapist. She spent 2 hours with her and was really thorough and lovely. She is writing a report for us but gave us a short summary at the end. She says dd is 2 years delayed with her speech and understanding - I knew it was bad but this really upset me. She also has some ASD traits - she likes everything in order, she showed extreme randomness and she is constantly repetitive. The speech therapist said it was far too soon to say it is definitely ASD and she will need to spend more time with her assessing everything. She will now have a weekly session with the therapist until she feels we can move to fortnightly sessions. I am glad we are finally on the right track it's been a long slog to get to where we are now.

In terms of the ASD - I am oblivious to it really. Asides from the above traits the therapist witnessed she also has an "obsession" with twirling her hair around her finger, if we go outdoors she needs a hat or her hood up (or if there's no hat or hood she will hold her head) I'm not sure if this is general 4 year old behaviours (my DS certainly never had tendencies like this) and my DH's brothers were both diagnosed with aspergers when they were children. I filled in the CCC-2 questionnaire today from the therapist and my DD scored 49. She is really bright in nursery - especially with numbers/shapes/colours - it's been put in her most recent report that maths is her strength.

I would really appreciate any feedback, any experiences or information. I'm feeling a bit in limbo!

OP’s posts: |
Marshmallow09er Thu 14-Apr-16 09:00:04

Hi MrsJ

Didn't want to leave you unanswered!
Welcome to the SN boards.

It sounds like you are doing all the right things and the S&L therapy will helpfully help both your DD and you.
It's a tricky time when you feel in limbo.

There's a Virtual Preschool thread in Special Needs - Chat that has others with DC around the same age as you which might be useful for you to read / join in with.

Getting the right support at school will be a priority (and this shouldn't be 'diagnosis' dependent, but needs-based).

It's often said here we mums know when something isn't quite right, so go with your gut. Read up on speech and language delays; but also read up on autism. It can present very differently in girls than boys. And even if your DD isn't on the spectrum some of the strategies for managing behaviour could still be very useful for you.
Your DD sounds delightful and you are clearly doing all the right things to support her.

MrsJ0612 Thu 14-Apr-16 10:19:35

Thank you for the reply! I will have a search for the preschool thread. The waiting game continues....!

OP’s posts: |
coffeemachine Thu 14-Apr-16 11:20:36

go to GP and get her referred to a developmental paediatrician. they can assess further and dx/rule out ASD. A Salt alone won't be able to make an autism dx. And even if it is not ASD but e.g. a speech and language disorder, with a 2 year delay your DD will need lots of help at school and it is important to get 'into the system'. hence referral to paed is so important.

As school start is approaching soon, I would also apply for an EHCP as a matter of urgency. don't wait for nursery to do it. The EHCP process takes about 6 month if everything goes smoothly but often it takes a lot longer.

I would also apply for DLA (you don't need a dx, it is based on need). they extra money will be useful for funding private therapy.

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