Education referrals put in place- shes only 2!

[piffle]

This is actually going to be a vent I think - sorry...

Well ok she's 3 next month, but the community paed specialist consultant has referred dd to peripatetic teachers for her eyesight, to find out what help she will need in the future, they are hoping to get her statemented now, as apparently (and I know some of you have had diabolical struggles) it is harder the older they get?
This all comes as a whopper of a shock as we thought she was doing really well- mainstream in fact
It was only when filling in the DLA forms (after [pressure from dr's and hvs and portage to do it) that it made me realise the struggles she has and always will have, actually it has made me very very sad
We've been told that we're guaranteed to get DLA (whatever that means) as she has gross motor, fine motor, speech delays and serious visial acuity issues which lead to a GDD I guess.
This is actually a vent I think, why is this system devised to make you feel so shitty about everything when you work so hard to get to a level you're proud of.
And I feel more like dd's therapist than her mummy sometimes and it makes me so sad.
Please tell me it gets better as they get older. I feel like running away with her to somewhere where milestones don't matter.
xx

[piffle]

DD has Noonan Syndrome btw... ooops

[Fio2]

I remember the feeling well just try and remember she is your daughter no matter and what it says about her on a peice of paper doesnt matter, it is just words. She is doing so well, feel proud. try to think of the negatives = more help and input for her, thus making her super brainy

[heartinthecountry]

Hi Piffle - your dd must be virtually the same age as mine (she will be 3 on Oct 5th). I feel like this too sometimes.

I sometimes think that if I could just live in a bubble with dd, our family and our good friends then dd's disability would not matter at all. It is only the expectations of the rest of the world that make things hard. Most of the time I shut that world out but you have to confront it with full force when it comes to DLA, statementing etc. I cried at every single statementing report that came through. Even though they didn't tell me anything I didn't know - seeing the extent of dd's delays in b&w was very hard. Most of the time she is my little girl who is doing really well. But when I see how delayed she still is, I do sometimes question if she is 'doing well' at all.

And yes, I often wish I could just be mummy without always having the pressure of feeling I should be 'doing something productive' with her.

So sorry, not a lot of help. But I do understand.

[butty]

Hi Piffle,
My son who will be 3 on new years day has GDD and also hypotonia. We have been through all the assesments and are still awaiting more tests including MRI and skin biopsy.
He cannot walk with out aid and can only manage 6 steps, he also cannot speak, apart from the word "NO", but he is happy and content, and although he struggles to communicate he underdtands "EVERYTHING".
He received his statement in july and has been attending the local special schools nursery 5 afternoons a week, and all i can say is what an improvement and how much fun for him socialising with others around his age and with similar and worse problems.
It is hard as a mum, i know, i sometimes think what are they saying/doing about my son, but at the end of the day, i see the happy little boy with so much enthusiasm and acheivement that i forget the rest of the shitty things like you say, filling the DLA forms is hard as you realise just how different they are from others of their age, but it gets you extra financial support to benefit you and your family.
I hope that you start to see the brighter side of things and just to let you know that you are not alone, the statements, dla,ca are all there to help both finacially and supportively for your childs needs.
If you ever want to chat, you can cat me.
i know it aint easy but look on the brightside, there are far worse problems that you could have faced, and that to me is the best way to deal with the matter.
It is your child and they will always be special and unique no matter what.!!
Butty.xxx

[Littlefish]

I don't know if this will help, and I am hoping that it comes out the right way in print!

I'm a teacher and I feel desparately sad when I try and fill in any kind of referral form, because everything I write sounds negative. It goes absolutely against everything I believe in at school. I work really hard at school and I know that the parents work even harder at home to help their child achieve what they do. It's a vital part of a child's education to celebrate success but particuarly so when those successes are so hard won. It feels really wrong that we should have to give details all the time of what a child can't do and make the situation seem as bad as possible just to try and get the appropriate support or advice.

I don't think this will make you feel any better, but just wanted you to know that there are others out here, not just parents but teachers too who feel the balance within the system is wrong.

[chatee]

piffle,
i know exactly how you feel-have been there my love BUT and this is a big but if you do not highlight the negativess in a big way then the lea will take this that your dd is not 'enough in need' to meet their criteria for the support you know that she deserves.
it is good news that they are starting the process sooner rather than later as it means it will all be in place for your dd's pre-school year and certainly for her reception year.
nb: do not be fobbed off with the 'we don't statement pre-school children'
ps:last year at my dd's statement review her teacher(newly qualified and first time at any special needs meeting)was very good at promoting my dds positives and really didn't like it when answering negatively about our dd that in the end the OT had to jump in and stress to the lea officer that in her experience children similar to my dd would start to struggle more in comparison to their peers as they got older and therefore her needs would be greater this year more than last
yeah it is really hard to hear and read all the reports but once the statement is in place and the support given your dd will come on in leaps and bounds and you will be so proud that you have fought and got what she is entitled to and again even more proud of your dd(not that you aren't proud atm, iyswim)
any problems or fancy a chat then cat me
lots of love chatee xx
(one very proud mum of dd(and ds)who is 5, has cerebral palsy and just started year 1
pps:sorry it's long x

[SoBlue]

IKWYM The whole process, i think is heartbreaking and degrading just to get your child the help they deserve. I try to think of it as a necessary evil. Its in aid of helping me and my child to have a easier and better life, where we can both enjoy it.

[Cristina7]

Hi Piffle. It took us ages to get round to filling in the DLA forms because it was all so traumatic. Now it's run out and, again, I haven't done it and have postponed it for one whole year. DS is nearly 6 and profoundly deaf. He wears hearing aids and does brilliantly with them. It's the thought of having to highlight the negatives that keeps putting me off. It has got better with time for us. If I'd known 5 years ago just how good things will get I would have spared myself a lot of heartache. But how was I to know or trust that if others were doing fine mine would too? Lots of sympathy, the early years are very hard.

[piffle]

I'd just like to thank you all for your messages, it can be awfully isolating having a child with specific special needs, can't it?
It helps to know that people can share their experience, not that I'd wish it on anyone but it makes you realise that it does get better.
Thanks again.
I'm sort of over it, the paed did say to ignore what she wrote, she had to over emphasise certain aspects to ensure the right things were implemented, she did apologise on behalf of the system too.
DD meanwhile gallops round being her usual delighful self, even if she does cannon of the furniture, shes my perfect girl