You think you come to terms with it...then..

[MedusaIsHavingABadHairDay]

Little things, really really little things, remind you that you never really do..

Today in the car home from school, DS2 was happily (and excitedly) talking about Santa (yes in July I know ) How Santa always waves to the people tracking him at Norad etc etc.

I was vaguely listening and turned to him when the thought entered my head 'must give him a shave tonight'

Then the two things collided in my skull.. he's 14, he still UTTERLY believes in Santa, and he needs me to shave his top lip because he is a young man now.

Then my eyes filled up, because no matter what, no matter how much we accept his LDs and ASD no matter how amazed we are and grateful that he talks and is healthy and happy in his world.... the reality if his disability sucks and after 14 years still hurts...:(.

I think the phrase 'come to terms with never coming to terms with it' is so spot on. On holiday, DS was at the park trying to 'talk' to some Spanish kids, which involved him just babbling at them, and I could see them getting angry with him, as if he was taking the mickey - and he was trying so hard to 'fit in', which he does all the time but it never quite works. Broke my heart.

Still, chin up eh?

On a practical note, we have put arrangements in place for DS if we should pop the clogs and I have to say it was a ridiculously huge load off my mind.

Thanks for that OrdinaryJo. I really need to make arrangements too, we've been saying it since he was born almost 5 years ago!

OdrinaryJo, we are struggling how to go about arrangements for my ds, plse let me know how you went about it.

Hi Night

In a sense we were very lucky in that DS godmother has worked in SEN for years and is exceptionally able. Also has no plans to have her own DCs. (I asked her to be GP when DS was born, so long before we knew DS would have issues). She's also my BFF and a fabby person as is her DH as well!! So, when we sat down and thought about 'who' they were the natural choice. And thankfully, they agreed to do it.

Next step is to go to the lawyer to get this recorded in our wills, and also to appoint trustees. The idea being if we do pop off, everything is sold and put in trust which then will provide monthly income for DGP's and if they need 'extras' - say if in the future they thought private education or paid-for support would help DS - the trustees would then decide on those exceptional requests. Trustees are currently planned to be our niece, my mum and another dear friend.

DS is 5 so we reckon this will cover us for the next 13 years, and then depending on how he 'is' we will review that. What I mean by that is, the DGPs expect this to be a lifetime committment - so if he's 20 and we both die, he may still need support / legal guardianship.

We are so, so lucky to have them in our life and they agreed without hesitation. Let me know if you'd like to know more but I have to say DO IT to you and chucky because it is such a relief. (It was actually that TV programme 'Can't take it with you' that made me go and sort it out but maybe I can do the same for you )

thanks Jo, you are lucky with a supportive set of DGPs, here it seems the family are too wrapped up in themselves to bother and sadly friends all backed off as soon as ds difficulties became more obvious. DS is a teen, but still hard to say what future holds.

You think you've come to terms with it and:

You are at MS trampolining club that DS has been attending since November so nearly 9 months and he is still all over the place and progressing very very very slowly (dyspraxia and suspected ASD).

You hear one set of parents sitting next to you in the gallery ask each other "is that kid disabled?"

Then another two children who started last week got the first 2 badges today. DS has got 2 badges in 9 months :(

(((hugs))) Ben10. These 'invisible' disabilities aren't always as invisible as we'd like them to be, are they?

I was reading a post from a thread in AIBU, and Pingu really hits the nail on the head with her account.

*If you have always dreamed of going to Italy and excitedly board the plane headed for Rome, you can't help but be sad and dissapointed when you find out you caught the wrong plane and you have landed in Holland. Holland has lots of lovely things to see and you enjoy your time there, but you can't help but think about Italy and what it would have been like.

Being a mum of a SEN child is like that. You have your hopes dreams and aspirations for your growing bump. You nurture your baby and dream about their future for them. When you find out they have SEN it is like finding out you caught the wrong plane. You still love them and have lots of joy from them, but you still wonder what life would have been like if they didn't have SEN. You can feel cheated and become angry at times.

For people who have been brought up in high achieving or aspiring families, SEN children are often perceived as "headbangers and thickos." It is very hard to come to terms with the fact that your beloved child may be one of those "headbangers and thickos" that you looked down upon only a few years previously. Families with money, good careers etc, just don't get children with SEN. SEN children are only for poor families or families who are all generally thick and uneducated.

sorry meant to highlight all of it in bold but mucked it up

Thanks Ellen

night sorry to hear that. I know how lucky we are, in fact his other set of GPs have been totally rubbish and still don't accept there's really anything wrong with him. Lucky I packed double.

Hugs to you and everyone else.

Actually, I had another moment yesterday when I found the peads report from 2007 that said 'DS is a normal little lad with a slight speech delay'. I had almost forgotten the mis-diagnosis that led us to go another 2 years without any help. Pants.