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A bit lost in the process

(7 Posts)
Emmab515 Mon 28-Sep-15 14:33:07

Sorry it's a long one!!

Any advice welcome, I feel a bit clueless and not sure what I should be doing!

Our son is just coming up to 2 years and 9 months, following our concerns re speech regression and behaviour we had our 2 year check up at the start of the year and they agreed he had "red flags" for development so referred us to SALT. As his parents we think he is on the autism spectrum. We had a SALT assessment a month of so after and was offered 3 therapy sessions. We only had 2 as the lady was sick and then had to wait for a review as this was cancelled a few times due to then lady being sick again (bad luck I guess!)

In this time I applied for DLA, which was given and also applied for the FEET Funding again which was given so our son started nursery twice a week in September. I also contacted portage which have started this month and comes each week for an hour (same sort of sessions as SALT) these work on attention and listening and speech. These are offered by our local council and can come until the term after he has turned 3 next year.

I also take him to a toddler group, music session and play gym session run for children with additional needs. I thought these would help with social aspects and also for me to talk to others in the same situation.

Anyway he had his SALT review today at nursery and called me after to say they will refer him to MAP for a diagnosis as she sees some improvements but again not where he should and sees issues with speech and social aspects. She was very honest and said with the waiting list it's likely to be April time!

In the meantime she has offered 3 sessions of speech therapy at nursery and 2 at home but this is the most they can offer. She advised the nursery to reapply for 1:2:1 funding based on her report as he currently gets 1 hour as he really needs adult interaction whilst there.

It seems quite a long time to wait until April.. Is there any thing I can do in the mean time? Obviously we will keep working on the goals they have set but I just feel a bit in limbo. I'm not really sure what even happens when he has a diagnosis, is it just more speech and language sessions? He won't be starting school until September 2017 and I guess we can defer this too as he wont be 5 until January 2018 should we do anything now about school? Is going private worth it to get a quicker diagnosis? We couldn't afford it but my husbands family have said they would pay.

I think the assessment today has just made me feel a bit deflated and a bit lost. He is a loving little boy, we do have massive meltdowns, not a great sleeper but his smile is to die for. He loves dancing and singing and could watch toy story over and over again if we let him. He eats well but a nightmare to sit at the table. Will run off and has no sense of danger! Hates waiting but what 2 year old does! But we wouldn't change him for the world.

Just any advise would be lovely. It seems a long road ahead.

Thank you xx

Emmab515 Mon 28-Sep-15 14:33:58

Sorry that is a long post smile

2boysnamedR Mon 28-Sep-15 14:50:56

Hi, sorry don't know what MAP is but your story sounds similar to mine. But we started off at developmental paediatrics at 17 months as there is a family history of sen.

Don't go private, getting any diagnosis will not open doors to any more therapy ( sorry hate to say but it's true). What it does open doors to is extra help in education and the right school place.

I did get additional private slt which IMO was money better spent as it's everything portage and nhs salt do but it's just better as no pressure to say "oh he's fine, money's run out off I go"

With portage, feet, slt and waiting for assessment your actually in a good place right now.

If you want to do more then the standard nhs and education thinking is joint attention. That's something that will really help

Emmab515 Mon 28-Sep-15 16:18:31

Thank you so much for your reply. I think the MAP was just the different agency together assessing to get a diagnosis so ot, salt and doctor together making a decision... Lots to think about.
Thanks again x

2boysnamedR Mon 28-Sep-15 16:28:41

A six months wait is quite short ( I'm still waiting after 5.5 years!) so I did go private in the end. But it's best to have your diagnosis via the nhs. Private is expensive, and the nhs might not sign off a private diagnosis anyway hence possible waste of funds.

Ask if your area does early bird ( here you need a diagnosis before you can this course) I have found it very good.

PolterGoose Mon 28-Sep-15 17:24:24

I agree with 2boys, a 6m wait isn't unbearable and you'd be amazed how much you can do yourself.

The early years one of these Fact Files might be helpful as a starting point. I've seen many parents recommend the Hanen books which would be worth exploring.

My ds didn't get diagnosed until he was 6, and he hadn't had any significant language delays, but what really helped him in the earlier years was using his special interests as a medium through which to teach other skills.

Emmab515 Mon 28-Sep-15 19:27:32

Many thanks for everyone's help. I will have a look at the fact files and see about the early bird course. Thanks smile

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