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Got the diagnosis

(12 Posts)
NoPinkPlease Wed 27-Mar-13 22:56:06

So, after a longish road, we got an ASD diagnosis today. I have to say I'm still not 100% convinced but I feel weird. I thought it'd help but the support is not great - no parenting coursewink until next April, stretched autism support team for school support and draft statement already in place to be negotiated pre-diagnosis. I suppose nothing's changed - I did get some leaflets about how to get support from other parents with kids with special needs on online forums grin. And I've been giving my ds big big cuddles. Oh well, we carry on...

marchduck Wed 27-Mar-13 23:19:15

NoPink, hope you are ok. It is hard to hear the words I think, I hope you are ok. On the plus side it sounds positive that you have a draft statement - hopefully the dx will help move it forward quickly.
All the best to your DS and you
PS: re. leaflets - I scanned the glossy pack I was given - nothing in it that I hadn't already learned (plus lots) from here!

NoPinkPlease Wed 27-Mar-13 23:40:15

Thanks - it was a shock although expected. I sobbed a bit after they left...

bochead Thu 28-Mar-13 01:23:42

If you can get to Highgate N.London then the courses run by the charity ambitious about autism are fantastic! They are based at Treehouse school.

MyAngelChuckles Thu 28-Mar-13 09:44:52

Hope your ok NoPink, my DS got his diagnosis last week. People keep asking me how I feel about it and I honestly don't know hmm.

They recommended some books, gave me a leaflet for BAT and told me what it meant but your right, nothing I didn't really know already.

Love the sound of those big cuddles, now if I can just work out how to catch my little toerag(he's much faster tha me grin).

Good luck with your statement and all the best for you and your DS

NoPinkPlease Mon 01-Apr-13 20:01:46

Few days in and I'm feeling really pants about it... In what other scenario / condition would you get told your ds has a lifelong condition and then get told NAS are good for any other info we need? Why no referral to someone who understands the myriad of treatments / options who can help us put together a package of support. The other thing that's bothering me - why did they say they would only diagnose if we agreed - that's weird isn't it? Either they know or not - why do parents get a say. AND, finally, why is that my ds' almost constantly undiagnosed and / or as yet unresolved moderate hearing loss not taken more seriously as a factor when there is loads of evidence of confusion of the two (according to Dr Google!)

Ooh, that feels better - maybe I just don't get this condition and system, yet? Arghh.

Flappingandflying Mon 01-Apr-13 20:08:47

So things haven,t changed much since our diagnosis 15 years ago. People thought that getting DS2 s diagnosis of diabetes would be hard and we got sympathy but actually, compared to flyingboys diagnosis, it was a walk in te park.

It does get better, honest. Be prepared for a landscape of mountains, valleys and gently rolling countryside. You will get through it.

DisAstrophe Mon 01-Apr-13 21:40:56

Hi NoPink. We just got a dx too. Ds is 7 and we've known for years but the waiting lists for dx are long round here.

I did the early bird course pre-dx and is was really helpful. Mainly cathartic as I got to sob with other parents but also giggle at how cute their dc's were in the video clips we shared with each other.

It is crap how little support there is for parents. Ds gets good support though his statement at his special needs provision now but that is a very recent thing.

Have you had a referral to ENT and audiology yet? Are they suspecting glue ear?

NoPinkPlease Mon 01-Apr-13 23:19:33

Thanks - it is really nice to know people understand my ramblings...

Ds is finally getting hearing aids this week - of his whole 5.5 yrs, I can only be sure he could hear for around 4 months age 3 when he had functioning grommets. This was the time the SALT and nursery staff thought he was "normal". I think he has significant social and comms difficulties leading from this - imagine not being able to communicate and no one knowing why for most of your life - that's got to impact on how you relate to the world surely as well as your anxiety levels? Oh well, I guess only time will tell... I'm also worried I'm in denial - that's not going to help either is it?

We've got a draft statement to negotiate over in the next month or so - trying to focus on that and the added clout a diagnosis gives this process...

LimboLil Mon 01-Apr-13 23:39:57

Hi we got diagnosis in Feb for my son, also 5. Also waiting for draft statement so in a very similar situation. It's been the strangest time, I had the year from hell really last year. My son's assessment ran alongside watching my dad die from dementia. I've done s lot of bracing myself, first for my dads death, then my son's diagnosis and now for the statement and the inevitable negotiations. I think possibly I am in a state of shock really, been going through the motions for such a long time now. I think everything you're feeling is part of the process really.

DisAstrophe Tue 02-Apr-13 00:00:22

Oh Pink that will definitely not be helping. ds has glue ear and I'm sure the impact of hearing loss in amplified in kids on the spectrum as they are less able and less motivated to try and make sense of what is being said. I'm not sure ds even understands that he does miss bits of what people are saying.

Ds is 7 and finally due to have adenoids and tonsils out and grommets back in - really hoping this will do the trick. Has this route been explored with your ds?

NoPinkPlease Tue 02-Apr-13 13:32:40

He's had two lots of grommets and adenoids out. He seems keen on aids as his little sister has them, so hopefully this will sort him out. It was the bit about knowing if he could hear or not on any particular day that was the tough thing about grommets - are they in or out?? Argh. At least we, he and other people can see hearing aids smile fingers crossed.

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