Thursday, 5 April 2012

Just an update

Well after our paediatric appointment last week, I slept on it, & woke feeling much more positive. 

The way we started to look at it was that if River had seen the doc that we were down to see (who
 isn't an autism specialist but can still diagnose autism), he may well have sent us away for 3 or 6 months, yet kept us under his care- however, because we only saw a registrar, we are now being referred to the top dog, the main specialist who we probably wouldn't have ever met otherwise. Which is good!
I didn't want to get to the autism specialist's appointment in 3 or 4 months & risk her still not having the Ed Psych's report, so I discovered  her email address, scanned our copy of the report, & emailed her a copy. I also included a copy of River's autistic traits (I'd given a copy to the registrar last week but just in case it gets mislaid I thought it best to provide an electronic copy.) I thought at the very least, she will have all the necessary documents about River for our appointment & at the very best, she may read them, be very interested in seeing River as he's so young & try to fit us in sooner if she had any cancellations.

However, today I received an appointment letter: an appointment for yet another registrar (not even the autism specialists registrar.) For September. So instead of seeing the top dog in 3-4months like we were told, we are seeing another registrar who won't have any ability to diagnose, in 5.5months. Who will of course need to refer us to a doc who can actually diagnose, which will again probably take another few months.

It is just sooo bloody frustrating! 

We think River is on the spectrum, so does the Ed Psych, so why can't we get seen by a Paed that can actually do something?? So I called our Ed Psych (have I mentioned yet that she's lovely?) who said they are probably very nervous about putting a lifelong diagnosis on a child at such a young age, but said my best bet was to speak to my GP to try for a direct referral to the top dog.Which is a pain in itself, as our surgery have just assigned us to a new GP that's just joined so I have a telephone appointment with her next week & will have to tell her all about River from scratch so that hopefully she'll refer us. 

Nothing is ever simple!

We've also got an appointment through for River's hearing test in May, & a letter accepting him for Occupational Therapy so we'll hopefully get an appointment for that soon.

Whilst chatting to the Ed Psych I asked her about nursery- children with special needs can get free nursery hours from the age of 2 instead of 3 which means River could start at pre-school in September. So really, I need to decide- do I keep him at home until he's 3 as originally planned, OR do I send him when he's 2, so that it can be a very gradual process- maybe an hour a week at first, then 1 morning a week, gradually building up. River isn't good with change & adapting, so it will be a slower transition for him. But he's still so little- I know lots of kids are in a nursery from a very young age but I've always spent all day every day with River! Then we need to decide- do we try to get him into a special needs nursery with nursery workers who are experienced with his needs, OR do we send him to our village nursery who openly admitted they have zero experience of ASD? Thankfully the Ed Psych was thinking exactly the same as us-earlier nursery would be best as we can gradually get him used to it. Also, we're steering towards the village pre-school as he will be surrounded by 'mainstream' kids who will stimulate him more & encourage him to learn to turn-take, mix with kids, share etc, also it's a familiar setting as the nursery playground is open to the public so we use it lots, and the fact they don't have any experience is almost a bonus as they'll have no pre-conceived ideas about River, autism etc & will be open to getting training, plus we'll get funding for River to have one-to-one support.

We also had the health visitor repeat her assessment this week, last done at 18 months. River has made improves in two areas: Visual was 3 months, it's now 6 months. Speech & Language was 3 months, it's now 10 months. It's still way off 21 months but it's an improvement which is great :)

Yesterday, we started the Brainwave programme which is exciting. However, we've recently been told that the Ed Psych/Portage are starting a new home-based programme for young children with ASD/ social & communication difficulties. They would like to start this with River in June, but wouldn't want River to do that & Brainwave. So we'd need to choose. I feel soooo lucky that we have these things to choose from but it's a tough decision. So we're going to do the Brainwave programme for 6 weeks, and see how River reacts to it, then decide.

Also, called DLA about our application, they received the GP report on 29th & can take up to 12 weeks to make a decision. Great.

So that's what's happened this week. 

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