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Original poster

when did you first realise/come to terms with

18 replies

countydurhamlass · 08/06/2010 20:53

your dc needing extra help than others of their age?

my ds has sn and up until now i have never really thought of my ds (nearly sevn) being any "different" to any other child. its only now when i have to fill in his dla renewal form and the school have suggesed applying for a Statement that i have sat and thought about what i actually do for him because to me its part of normal life, eg i have to help him cut his food up, hold his hand when out in the street, calm him down when there is a sudden loud noise,help him dress. this may sound strange because we visit the hospitals in our area about once every month but i suppose its not something you think about much.

OP posts:
lou031205 · 08/06/2010 21:15

I suppose quite early for me. Preschool told us that DD1 was 'a little behind' at 2.9 and asked for permission to contact the area Inco for advice. I just said 'where do I sign?' I knew she walked late, and knnew she was 'hard work', but had no idea as to the extent of her issues.

But things progressed quickly & by 2.10 she was falling over & epilepsy dx by 3.1 & full dx of brain malformation by 3.5.

dounutbrain · 08/06/2010 21:17

I think it was when i filled in dla when she was 3 you suddenly realise that theres so much they cannot do compared to others same age. Its really depressing filling in forms and now dd is 4 we are now starting her statement for reception and again it makes you fed up with all the things that they need a 1-1 for. On a positive note if I look back a year theres a few more things she can do now hurray

IndigoBell · 08/06/2010 21:18

I still haven't come to terms with it. Or at least I can't really understand why school are applying for a statement for my perfect DS1 (age 9).

Like you said, calming them down, sticking to a routine, shaping your life around them, staying home, becomes normal. And I don't know what a NT 9 year old is like so how can I appreciate his differences?

But also.... he is perfect. I just wish he wasn't always so stressed and anxious....

Only regularly occassionally do I get overcome by it all.

Al1son · 08/06/2010 21:28

In Sept 2009 I thought I had two girls (6 and 12) who worried about school a bit more than usual and didn't make friends easily.

I now have one with a Dx of Asperger's syndrome and severe anxiety and one who is being assessed.

I filled in a DLA form for DD1 ten days ago and it really brought it all home to me. It is amazing how much you can think is perfectly normal family life before you sit down and really think about it. Filling in that form was about the most depressing thing I have ever had to do. There is no head in the sand now I've pulled her to pieces in this way.

It does blow me away every other day or so. I nearly broke down in her pych appt today but had to keep it to myself. I hope it gets better with time (for all of us).

dounutbrain · 08/06/2010 21:33

Oh im not the only one then I did start crying at educational scicologist appointment today only a little but i felt so embarrassed. Just couldnt hold it in.

roundthebend4 · 08/06/2010 21:36

For me it was very early on but only took the proffedions couple yearsto catch on . This was despite him bring very late with milestones non verbal and mean no baby babbel animal sounds

Some days yes I forget to a point then I see dc of his age doing things he can not or never will do

5inthebed · 08/06/2010 21:50

I have days/weeks/months where I feel fine with it all and then something happens to bring me back down to earth again.

This week it is DS2's Annual statement review. I'm petrified that everything we fought for last year is going to be taken away and we are back to square one.

asdx2 · 08/06/2010 21:58

Early on it felt and looked pretty obvious that ds had extra needs. His behaviour was appalling and way beyond the realms of very naughty and of course he didn't speak properly until he was seven.
But you alter your life you adapt and it becomes normal.
Ds learnt to speak we managed his behaviour and quite probably stuck our head in the sand thinking the worst was over.
Have to say that we got a rude awakening once he got to secondary school age and you suddenly realise that needing help to wash and dress at 11 isn't normal, realising he can't cross a road or be left alone isn't normal and so now he is fifteen and I know our life isn't and probably won't ever be normal again.

Macforme · 08/06/2010 22:00

We knew my son had special needs by the time he was 6 weeks old...

But he's 13 today and it still aches. Birthdays especially, as the reminders of the things his siblings could do by then, hurt a little. Also the scary knowledge that adulthood is fast approaching and he'll never be fully independent.

But other days I realise that to a large extent now I don't think about it..he is who, and how , he is and we just get on with daily life.

ouryve · 08/06/2010 22:02

It was quite early on for both my boys. For DS1, it was when DS2 was a baby and DS1 reacted very negatively towards him and I found it incredibly difficult to keep up with him, couldn't manage him at baby clinic, etc.

DS2 was much younger and not meeting milestones. Now he's about to start reception, it's really hitting home.

anonandlikeit · 08/06/2010 22:39

we get used to our dc being who they are, its only when forced to draw a direct comparison that it smacks you in the face.

I've known form birth that it was likely that ds2 would have some form of disability (prem) but the nature & extent of his disability evolved over time, although there were very obvious differences from ds1 from a very early age

Original poster
countydurhamlass · 09/06/2010 07:57

thank you all for your responses,

OP posts:
sarah293 · 09/06/2010 08:51

This reply has been deleted

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imahappycamper · 09/06/2010 11:52

I have never applied for DLA and reading this it struck me that the reason is that I haven't really come to tems with DS' difficulties at all and that applying for DLA would be a kind of admission that he isn't going to just "get better". Stupid because I know intellectually that he will change and develop, but not become "normal".

Original poster
countydurhamlass · 09/06/2010 18:10

imahappycamper, i would apply for dla if i was you, i did it not because of the extra money i would have (i put most if it into my ds's account for when he is older) but if i get it for him for as longas i can he will have some money when he is older in case i struggle to financially support him or he needs money for example for taxis rather than buses, for someone to help him if i can't. it will just make him a little more financialy stabl when he's not a child anymore.

OP posts:
imahappycamper · 10/06/2010 12:34

He is 15. Probably left it too late now.

ouryve · 10/06/2010 12:53

It's not too late. You can apply for him until he's 16, then there are forms for over 16.

imahappycamper · 12/06/2010 19:11

Have sent for DLA form and found someone who is going to help me fill it in. Thank you countydurhamlass/ouryve.

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