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Diagnosis at last - but now I feel miserable.

(12 Posts)
Toffeefudgecake Wed 22-Jun-11 16:37:13

We have been fighting for so long to get answers about DS's issues. Now I have them in black and white and I just want to go away and cry. It's not even as I'm surprised by them. I have long suspected each and every one of them. They are: social anxiety; dyslexia (already diagnosed, so used to that one); OCD; Tourettes Syndrome; and ASD traits (but not diagnosable because his social skills are not poor enough).

It just takes some getting used to, doesn't it?


BagPuss71 Wed 22-Jun-11 17:01:01

My ds has ASD and although I was the one pushing for a dx, when it finally happened I was so upset. Even though I knew it felt such a shock. That was early last year sometimes I still can't quite believe it but its just the way it is and its part of our life now.

Nothing has changed, he is still your DS, just now you can understand it better and help him. Because of my DS dx I understand what he is doing and why he is doing it x

EllenJaneisnotmyname Wed 22-Jun-11 17:07:32

It's hard seeing it in black and white. As BagPuss says, he's still your lovely boy, he hasn't changed. Try to see these DX as keys to opening some doors for support for your DS. And be kind to yourself, it is upsetting, you are right to be grieving, but it does get better in time.

BialystockandBloom Wed 22-Jun-11 17:18:05

It is really hard. Part of you still hopes/dreams of being told it's "just" a delay, or that it's all your imagination, or with a bit of parenting classes everything will be tickety boo.

But as the others have said, he is still your lovely ds - all the dx has done is give an official name for a collection of characteristics and behaviours. It is these that you need to focus on, which of course you know already. And there is loads you can do to help with each of the difficulties.

wine and (hugs)

StarChartEsq Wed 22-Jun-11 17:21:46

Yep. A slap in the face doesn't hurt any less just because you were expecting it.

But, with labels comes problems you can read about, and solutions you can research and you and your ds are much better off with that information.

Be kind to yourself and take some time to get used to it. Sorry.

Toffeefudgecake Wed 22-Jun-11 18:45:04

Thank you all. Bialy - I am on the real wine now! Going out for a walk helped. I know I will get used to these labels. I know he's still my boy. Star - you are so right: a slap in the face doesn't hurt any less just because you were expecting it.

I know we'll all be fine and I know it could all be much worse. I know people on the SN boards cope with much worse and I probably shouldn't complain. But, just for today, I want to! I think, more than anything, I'm just sad that my DS has been coping with so much with so little understanding from the adults around him. I always wanted my children to have happy childhoods and I have provided a happy home - but I never counted on things that I couldn't control, such as special needs, which make my son's daily life into an ordeal. He has been dealt a rough hand of cards.

I have just spent far too much money on files and notebooks to start the statementing process. I will channel all my angst into that.

BialystockandBloom Wed 22-Jun-11 19:17:13

I'm just sad that my DS has been coping with so much with so little understanding from the adults around him.

I still can't bring myself to think too much about this with ds yet either sad

Still, being proactive definitely makes you feel better and more purposeful. And I loved spending money and time on files, dividers, hole punchers, notebooks, plastic folders etc!

<is there a weirdo emoticon? grin>

AJcat Wed 22-Jun-11 19:30:29

The reality does hit home doesn't it? You suspect there is something wrong, you go through the process of getting a dx and then when you get it you go through such a mixture of emotions. DH and I went through the same thing last September but what it will give you is the confidence to continue to ask and or fight for the help that your DS is entitled to! Btw I too was in WHSmiths today buying files, notebooks and plastic wallets and am now so organised,very proud of myself. Apparently it puts the frightners on SENCO's etc when you turn up with it looking very efficient, well that's what I am hoping for when I have my meeting next week with the SENCO. Keep looking on here and posting for advice I have learnt loads and am so grateful for all the advice I have received.

EllenJaneisnotmyname Wed 22-Jun-11 20:04:59

I like to type up a few points that I want to make and copy enough for everyone and distribute at the start of the meeting. I feel it helps to put me on an equal footing in their minds.

OrdinaryJo Wed 22-Jun-11 20:59:16

If it helps, I felt exactly the same way. There's always that flicker of hope until the letter lands on the mat. And it's OK to feel upset. DXs are tough, but they are also the key to unlocking the support DS and family need. Cant find my square brackets on this keypad or I would send you a wine too!

Toffeefudgecake Wed 22-Jun-11 22:12:48

Oh, Ordinary, thanks, but I have had quite enough of the real stuff tonight. I need to stop now and start being sensible. I will try to focus on the fact that DX are the key to unlocking help - once I have grown used to the fact that these labels apply to my son.

I love the sound of all you organised mums! I bet SENCOs dread you! Bialy - buying all the folders and files definitely gave me back a sense of control again. Very strange! I don't think we should think too much about what our DC have been through from adults who don't understand. Probably best to focus on the present, if possible.

AJcat - that is very encouraging. I will do my best to put the frighteners on our SENCO too (it won't be difficult - she is very disorganised herself). Good luck next week.

Ellen - I'm not sure I'd have the nerve to do that, but I'm very impressed! Bet they're all scared of you!

Going to read a bedtime story to my still-perfect boy now. smile

EllenJaneisnotmyname Thu 23-Jun-11 17:53:18

grin TBH, once I start blubbing the impression rather goes to pot!

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