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Jumping hoops to no avail?

(8 Posts)
MandaHugNKiss Wed 12-Feb-14 18:25:56

Hi,

I'm on the first steps of, from the little bit of reading I've done on this forum, what it seems will be a long, hard fought journey.

DS2 has been 'different' from the word go. I have long had suspicions that he's on the spectrum but I thought I'd wait until nursery to see if they agreed rather than engage the health visitor as my experience with health visitors hasn't been great and from what I can tell unless the child is quite profoundly affected then it's brished off in a wait and see way. And as I had DS2 (third child) 12 years after my second so although I instinctvely knew he was quite different from them I thought maybe I was remembering things wrong or, y'know, he wasn't that different... but DS3 coming along and developing in line with my first two children kinda confirmed my feelings.

Anyway. He started nursery in September and by christmas the nursery had referred him to an educational psychologist who in turn suggested referral to early years communication clinc and OT... (and gave me some resources to try with home that were from a book aimed at parents/carers of ASD children). We saw the therapist (am I right in thinking I refer to them as SALT?) Monday (I feel blessed we're getting such quick appointments, too, after everything I read here!) and she in turn has referred us to audiology 'to rule out hearing problems' (even though I do not think he has a hearing issue (nor does she!)) and she's doing the OT referral and also to a pediatrician. (also offered me a place in a parents group that lasts four weeks to 'give me lots of strategies to help DS2's communication development' (he has a large vocab, but comprehension is patchy at best).

Does this mean anything, or nothing?! At this point, I'd have thought if there was nothing going on, they'd not refer on, would they? Would they just say 'everything seems ok'? Have any of you seen ALL these different people and THEN they say 'Everything seems fine'?

I keep expecting them to say 'everything is fine' as I read so much on here about how things are minimised and... if he's anything, imh(and obviously unqualified)o, it's aspergers/HFA with hints of OCD and ADHD so not, y'know, glaringly obvious to other people looking at him that there's anything going on...

Ack. Am I minimising?! I want him to get the support he needs but if I jump through all these hoops and they say he's fine, then what? (or is that a bridge I shouldn't be thinking of crossing just yet?)

All so bewildering.

Obstacles Wed 12-Feb-14 18:37:01

Hi

My son is older so we've been where you are. In our case we eventually got the asd diagnosis. I think if you can you should go along with the suggestions. It is a long road and it may take a while to get answers but the parent classes will be a chance to get to know other parents and find out more about how things work in your area.

MandaHugNKiss Wed 12-Feb-14 18:45:13

I absolutely have no problem with jumping the hoops grin I think it's funny the way every person (starting with the headteacher at nursery who is also the SENCO, through the Ed Psych, to the SALT on Monday) suggests a referral and then say 'if that's alright with you?' Why wouldn't it be ok?! Are there really parents who say 'there are clearly issues but let's not explore what they might be?'

I think the general jist of what I'm wondering is how often does one referral lead to another, then another, another and then end up being told 'There are no significant issues'. I think I'm worried that that is what's going to happen.

MandaHugNKiss Wed 12-Feb-14 19:26:06

By the way obstacles I've just seen you're on the SWLondon/Surrey border - me too!

StarlightMcKingsThree Wed 12-Feb-14 19:35:12

There are parents that say 'How dare you suggest my child has problems, obviously there is something wrong wit YOU if you think that'.

It isn't their fault. Acceptance and adjustment can take a while.

MandaHugNKiss Wed 12-Feb-14 19:47:11

Of course, starlight <facepalm> - I'm on a huge learning curve here and I think probably far too focused on how I've been feeling for nearly four years now. Jeeze, I must sound completely lacking in empathy (and I wasn't at all portioning blame - just failed to step out of my own 'been worrying there's something wrong for years but doubting myself and PHEW someone else agree with me' shoes!). I suppose there must be plenty of people who are surprised at this juncture (especially if their family and friends insist there's nothing wrong the way mine have - if I didn't have three other children for comparison (I KNOW all children are different from each other, but hopefully you know what I mean) I may well have deferred to their opinion and then been shocked once the nursery (pretty quickly!) raised concerns!

Obstacles Wed 12-Feb-14 19:47:39

Hello neighbour!

I think some parents do end up being told their child doesn't meet the threshold for a diagnosis yet and it gets kicked into the long grass.

I've known two children who seemed very delayed at three catch up dramatically and at 7 be indistinguishable from peers so it does happen sometime.

But with most of the people I met when our kids were three or four the suspicions of asd were correct and the children all are affected in dfifferent ways and to varying degrees

If by chance you are in kingston then you should get on their waiting lists for assessment now. People literally wait years to get an asd assessment - especially if their kids have other learning delays.

You have four kids and probably know loads of children. What does your gut say about your son? Have you looked at the nas website for a list of tell tale signs?

StarlightMcKingsThree Wed 12-Feb-14 19:55:34

TBH, the service you have had so far is comparatively good and rarely given easily, so I would be inclined to believe that there is something going on that truly merits investigation, so I would go along with everything and try to speed up any conclusion because information enables you to research faster, anything you can do to help.

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