got over having a special needs child but....

[salsmum]

I had a daughter 18 years ago who was born with cerebral palsy. I got over the shock and heartbreak in a couple of days, had a cry and that was it!. Roll your sleeves up get on with life and live....
I spos i'm lucky in the sense that i've always been a 'tough cookie'.
WHAT HAS BROCKEN ME ON AN ALMOST DAILY BASIS IS THE CONSTANT BATTLE US PARENTS/CARERS HAVE TO FACE ON AN ALMOST DAILY BASIS TO ACCESS THE MOST BASIC NEEDS OF OUR KIDS..NEVER ENDING PHONE CALLS WHERE PEEPS NEVER GET BACK, FIGHTING FOR EQUIPMENT, REPAIRS, TRANSPORT, FINANCIAL HELP....THE LIST GOES ON!.
Lets not also forget that most carers are fighting these battles as lone parents also.
Its about time that people realised that accepting your disabled child is just 1 battle won. The 'war' has to be fought on a daily basis by worn out parents who are sick of the
'fights' they have to have with disabled services.
DOES ANYONE AGREE??[Hhmm]

Ithink everybody with an sn would agree......my ds is only 20 months old and Ive so far had to battle for DLA, his seat from OT (which we are still waiting for) appropariare seating for nursery (everyone is passing the buck!)

Ive only just started on this road and I know werve a long long way to go. i worked with children with special needs since I was 16 and watched the parents battle on a daiy basis...I never knew just how they found the strength to do it....not until now that im having to do it for my own son.

Its awful isnt it....i joked the other day about gettnig my son an ASBO in order to secure the funding that he needs...!

Were all there with you

i have 3 kids with autism battles are part of my daily routine, only a few of my daily battles are with the kids, thinking about this the other day and i have done at least 12 DLA forms for my three.

nods head.

nods head.

It's never ending, isn't it? As a rule of thumb, I make three phone calls before I get to the person I need. Then they're out, and they don't call back.

I have a list of calls to make on my fridge door, and it always has at least 8 calls to make. (hope that makes sense).

And I'm sick of it all, tired of the constant battles, and it's getting worse because lately no-one seems to want to know. When your child is very young it seems there is lots of help, but now he's 8yo, everyone passes the buck. Everyone seems to have given up.

Tired, tired, tired.

Sorry, that sounded really grumbly. I know everyone is in the same boat, not just me. Sorry.

THANX FOR YOUR REPLIES
SORRY FORGOT TO MENTION THE O.T. HAS LEFT, CARERS LEFT AND THE DRIVE [WHEN IT GETS WIDENED] IS GOING TO BE DONE THE SAME TIME AS THE BATHROOM ADAPTIONS! I DOUBT ANYONE WILL SEE US FOR ALL THE DUST! TOLD O.T. DAUGHTER HAS HAD ASTHMA AND THEN SHE SAID "DON'T WORRY THEY WILL HAVE A DUST SHEET"?? OH SORRY HOW DAFT OF ME! I FORGOT THAT THE 100% COTTON OVERGROWN TEATOWEL WILL PROTECT US ALL [WHEN STRETCHED OVER DOOR FRAME WITH NUMEROUS HOLES N TEARS]SO WHEN WE FLEE THE HOUSE FROM BATHROOM DUST WE'LL AV TO 'HOP' OVER BACK FENCE TO AVOID THE 'DUST MONSTERS'ON THE DRIVE!.
BE NICE WHEN IT'S DONE THOUGH! LOL

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oh bolleaux so that didn't continue. is the panel due thurs?

I know what you mean about the battles....we waited 9 months to get a potty chair for my son and in the end we bought it ourselves direct from the supplier (cost £80) and sent the NHS the bill !!!

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close! any response to your letter?

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