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Help!

(11 Posts)
Photomummy16 Fri 10-Mar-17 20:19:28

I've just been told that, having finally been referred to a paediatrician, we now have a 5-6 month wait before we actually get an appointment...

My daughter is 2.5 with no spoken language, although she uses quite a few makaton signs. She has moments of 'absence' from time to time. Socially, she is behind in her development (although maybe that's because of the lack of verbal comms)
I think she might be hypermobile too - her thumb/finger/wrists are very bendy and she has a hard time walking and running. Her ankles and knees mean that she moves like a little puppet. She can't jump - not even one foot after the other, or off a step, iykwim.

I'm getting to the end of my patience with the system. Speech therapy won't see her until she has had the paed appointment. Neither will physio or OT. We've been asking for a paed referral since last May.

The HV told us to also get a referral to an audiologist to rule out a hearing problem (her hearing seems fine though) but today I found out that the GP 'forgot' and accidentally re-referred us to the paediatrician- for whom we're already on the list! So I need to go through the motions again to get to the audiologist.

Everything is going through my head - autistic spectrum? Mild CP? (She was born with polycytheamia, which she had for a week before it was sorted). I'm finding it so frustrating when EARLY intervention would be so helpful, and yet we cannot access anything.

I guess I'm wondering if anyone has seen similar symptoms and can give me some help/advice or if anyone knows a way to speed up the process.

Thanks

Photomummy16 Fri 10-Mar-17 20:25:06

Oh just throwing in a couple of other things- she was very late to wave and point (around 2) and tenses all her muscles when excited. Over the past two weeks she has started hand flapping too. In general she's a delightful, happy, outgoing little person.
It's all quite hard.

zzzzz Fri 10-Mar-17 20:33:40

I would stop hanging so much on the paediatrician and diagnosis because when you finally get that far there isn't a wave of help/support or anything you just do what you are doing now but get the shorthand of saying "my child has XXXX" rather than listing all her deficits.

I found the early Montessori syllabus really helpful. The toys at Absorbent Mind are worth copying.

Do all the tests but start supporting her now.

(Oh and apply for DLA and use it wisely)

Photomummy16 Fri 10-Mar-17 21:09:34

I'm not really worried about diagnosis per se, but do want to start getting some help, so that's a rather depressing thought if true. Bleurgh.

AngelicaM Fri 10-Mar-17 21:16:08

Sorry to sound gloomy but what zzzz is right, there's really very little help out there after diagnosis, if any. I would focus on things you can do, Hanen's 'More than Words' book is a good starting point but expensive. If you have any spare funds then I would hire a private SALT once a week or so, you don't need a diagnosis for this. And chase everything always, things like the audiology, really key as the Paed appointment work be pointless without these things being done and other issues ruled out. I always phone when I get appointments etc to confirm, and often you can get in earlier, pester, pester! Good luck!

zzzzz Fri 10-Mar-17 21:23:48

There really isn't help here (SW) that I have seen. Ds is now 11

PolterGoose Fri 10-Mar-17 21:53:44

Message withdrawn at poster's request.

craftyoldhen Fri 10-Mar-17 22:17:31

Yes the system is frustratingly slow.

I was first concerned about my DS's speech last March, and he only got his first NHS SALT appointment in January this year.

In the end we paid for a private SALT assessment and then fortnightly therapy until his NHS appointment came through.

I don't understand why she can't be referred to SALT without seeing the Paed first, are you sure this is correct?

BackforGood Fri 10-Mar-17 22:42:42

In our area, you can be referred to SaLT without seeing the Paed first, but the waiting list for SaLT is longer than the waiting list for the Paed so not much help.
I have learned that all parts of the country are different in their systems, but ALL of them are underfunded and the waiting lists are far too long.

Quite a few of the Children's Centres have 'bought in' either SaLTs or SaLT asssistants, and some have trained up FSWs to run Sp&L groups, so that might be a place that it is worth going along to, to see what is available in your area.

They also sometimes have groups run by Barnardoes or MENCAP or KIDS or other voluntary / 3rd Sector / Charitable / Grant Funded organisations which can be superb, but they do tend to come and go as they get grants - worth asking though what support they know of.

Photomummy16 Sat 11-Mar-17 06:43:45

Thanks for the advice all, and that Early Years Factfile is particularly useful and interesting! I'll investigate the children's centres and local groups too.

We did an initial block of 4 NHS SALT - I think it's where they triage you? It was playbased and essentially teaching us to play and talk. The therapist said that because we are already doing those things at home, there was 'no point' seeing her again until we had seen the paediatrician.

Photomummy16 Sat 11-Mar-17 06:44:30

I've contacted a private therapist after your advice so hopefully we can get cracking smile

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