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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

we have our asd diagnosis

28 replies

used2bthin · 21/01/2013 19:23

today. after five years of worry over dd s severe language disorder. which obviously is still there but this makes sense of it all and the obsessions and behaviour.

waiting for report still but felt like telling someone as I.'ve had so much help here.

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Handywoman · 21/01/2013 20:12

Congratulations, you were thinking it would not happen but it has, this is the vindication you've been waiting for. Well done, really pleased for you.

Original poster

used2bthin · 21/01/2013 20:36

thank you and thanks for your help. I smiled when she said it then wondered how many do that from sheer relief like me, to have answers at last even if they are not straight forward. I am hoping I have done all the upset bit but know from the diagnosis of the genetic condition that it comes and goes.

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blackeyedsusan · 21/01/2013 20:38

well done for getting this far. ds was diagnosed 2 weeks ago! they have to send the report out in 5 days, so maybe saturday or monday?

it is a relief to know and be confirmed that you were not deluded! good luck fo the next steps.

lougle · 21/01/2013 20:41

Well done, Used2bthin - you were right all along x

Original poster

used2bthin · 21/01/2013 20:58

thanks blackeyed and lougle. still lots of questions like where does the chromosome deletion fit with this and have to wait for the results of the cognitive tests but I think things are finally becoming clearer.

I didn't know that about the report. she said next week but could be delayed if the snow continues. I was impressed tbh as have months for paed reports.

black eyed what happens next for you with support? I think we are not looking at much difference initially as dd already is moving to special school but it is definitely good to have . it there.

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mariammama · 21/01/2013 21:02

Congratulations and and have a . Might hit you tomorrow.

mariammama · 21/01/2013 21:02

but I remember the relief well

Original poster

used2bthin · 21/01/2013 21:28

thanks yes it's a strange thing. almost exactly five years since I took her to the doctor having lost words. and actually what did it was asking the question does she have autism. it still feels like she didn't used to because I was so sure she didn't ,it's got so much more obvious recently. wish I had known as there are things I would do so differently.

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blackeyedsusan · 21/01/2013 22:28

we get an appointment with a nursery nurse who may goive us al the information we need fo the next 14 years or so..

a referal to the support services, whose support has been cut so don't hold out much hope.

and ot referal as he does not write.

WadingThroughTreacle · 21/01/2013 22:28

Hi how old is your daughter? My son is five and we are getting outcomes from multi disciplinary in a few weeks. I feel like I am going mad waiting. My son is being assessed for statutory assessment too. Gad you got the outcome you wanted. I am not exactly looking forward to getting a diagnosis but the thought of not getting one is driving me equally crazy!

StarlightMcKenzie · 21/01/2013 22:35

Oh Thank God!

I know it isn't the best thing but it definately is the better thing, given the options.

Still feels like a slap in the face though. Be kind to yourself and give yourself some time off. It's important to get on with the next steps but you also need to give yourself a little holiday at important milestones in order to regroup. Have some breathing space.

zumbaleena · 21/01/2013 23:37

I dunno how to respond. Here I am, trying to get an asd diagnosis both from NHs and a private doc and am not getting it as dd keeps clearing the test. She still has huge challenges but she won.t get the support until she has a diagnosis and my statementing is already under way. I feel like such a fool.

WadingThroughTreacle · 22/01/2013 00:03

Hi zunbaleena. I was told statement is based on need, not diagnosis. Which begs the question, why did no one tell me to go for one earlier. I was a bit in denial and didn't push early for diagnosis, but once I did school said oh need is more important. To be fair,school did suggest SA and they have done the application so i am prob lucky but I think maybe as far back as nursery they could have been nudging me.

Original poster

used2bthin · 22/01/2013 07:21

thanks all I am always happier in the morning. it is upsetting but it's the start of moving on I think. Zum we have had a statement since she started reception. her speech and Lang disorder and medical needs are quite severe so that may be why but it seems to differ so much are to area, it is unfair. also my dd recently has been hurting the other children which has meant she got more support as it became so awful, she is moving to special school in Sept. good luck, I was getting so worried about more waiting it's like being stuck.

wading yes it is tough either way. I had been reading on it and just knew it was the case so knew any more delay would be no use as we would end up with the diagnosis in the end . she is six and a half.

blackeyed Susan we have OT already but I think we now get similar with the other stuff but I think for other family members it will help them understand and . it's an . explanation.

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Original poster

used2bthin · 22/01/2013 07:28

posted before . it timed out. star thanks yes it's been a stressful wait so glad it's over and a short . break is a good plan. I say short because dd has been refused funding for treatment of a medical issue which is a result of her genetic condition. the pct say if I want to appeal I need to . provide more evidence . of why she should . have . it. Never ends. But this diagnosis bit is done which is a huge relief and we are also having behavioural support from the psychologist which helps a lot.

Today is definitely a rest day. (especially as naughty seven month . old still sleeps no better than when . she was born!)

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StarlightMcKenzie · 22/01/2013 07:56

Oh my naughty 7 month old does the same!!!!!!

EllenJaneisstillnotmyname · 22/01/2013 08:31

Well done, used2b. and cake needed this morning. I wouldn't start worrying about what might have been if she'd been DXed earlier. If the profs didn't realise it, and wouldn't have DXed her without your pushing, what more could you have done? We all have regrets. I'm sure any work done with your DD up until now will have benefitted her, whatever her underlying DX s. ((((hugs))))

sweetteamum · 22/01/2013 10:08

Well Done usedtobethin you can now carry on with the next chapter with more of an idea what the future holds

Original poster

used2bthin · 22/01/2013 12:59

Thanks Ellen and sweettea . I know,pointless speculating and at least now I can focus on getting things right now. Haven't yet told many people but those I have have said they are happy and sad for me which sums it up.

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silverfrog · 22/01/2013 13:20

well done, used2b

what a journey, but glad it came right (that sounds so wrong!) in the end, especially as you were worried you were going to be fobbed off.

I remember the huge surge of relief as I was finally told 'meets the criteria for ASD dx' - at last! someone who wasn't going to say 'wait and see - come back in 6 months...'. I walked out of the hospital, and cried with sheer relief that we finally had an answer, and a bit of paper, and all that went with it.

hope your dd2 gives you a bit of a break today - my 6 month old still only goes for 2 or 3 hours before needing another feed, and last night let me have all of 3.5 hours sleep

chocjunkie · 22/01/2013 13:49

oh, usedto - just spotted this.

well done; you must be incredibly relieved.

will probably take some time to sink in so be kind to your self ( and chocolate?)

Original poster

used2bthin · 22/01/2013 15:09

Exhausting isn't it. My friend had a baby just before me and hers sleeps 7 to 7! Dd1 slept quite well too although had to be woken for medicines so I didn't appreciate it.

And thank you yes it's so much better than wait and see which was doing none of us any good. I can tell people she has asd which helps a lot too as people have generally heard of it.

Cake, wine and choc it is!

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Ineedmorepatience · 22/01/2013 16:02

Hi used I am glad you got there but obviously be kind to yourself because it could hit you in a day or so.

It took 3.5 years to get a dx for Dd3 and I nearly jumped for joy when the psychiatrist said that she does have ASD.

I did feel a bit wierd after a day or so though, I hadnt realised how much time I was spending thinking about assessments and appointments.

Good luck

auntevil · 22/01/2013 17:24

Congratulations and does sum it up.
Last week when the family got a genetic dx, I could feel myself grinning.
As you say, it's a feeling of relief that you are not deluded, all the appointment organising, form filling and research was for a perfectly legitimate reason.
Shame it takes so bleeding long and knocks stuffing out of you on the way.
Put some stuffing back by reminding yourself what a good job you're doing as a parent - getting a dx, working to get suitable support and a bit of

Original poster

used2bthin · 22/01/2013 19:31

Thanks yes I think it will get to me, I am definitely more sensitive today as dds teacher was saying about the social worker ringing and asking did she think dd has autism and she'd said sometimes. I am guessing this was before I said she has a diagnosis now but it's still wound me up a bit, just the idea of people speculating but i know that's not what they were doing and I gave permission for her to call and discuss dd!

Yes I know what you mean, I have thought so much about what it would be like to have a cause for dd's difficulties and I know I don't have a cause for the autism but this is so much further ahead than ever before, I have sat up going over condition after condition trying to work it out!

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