Battles won! - Post yours here!

[AngryWasp]

I like the anetdotal experience threads. I think this one is important because we all invest so much into our 'battles', - win them and it only gets us an inch closer to what our children need.

There are very few people who we can celebrate with or who will understand how hard it was to get that 1 hour extra funding, and why it is such an acheivement, - so please, - I'd love to hear your success stories. I'm in the fortunate position of having 2 today!

Also, I think it is really important to remind people that just making a little fuss can sometimes give great outcomes.

[AngryWasp]

Headteacher told me there was only 2 hours funding available for ds at preschool and there was nothing she could do because of the way it worked.

Told her I was very disappointed with that, phoned the Advisory Nursery Nurse, and phoned the Team Manager of the Ed Psychs and all of a sudden

• ta da - 5 hours.

Battling with GP AND Paed to refer us to OT. Keep phoning OT to tell them that we could not get a referral so what next because he needs to be seen. She sends leaflets. Phone to say leaflets innapropriate and

• ta da - home visit from OT next week!

Please let me hear yours just to show me, and anyone who might be looking how important it is to be a royal pita!

[buy1get1free]

It's human nature to want the 'pests' to go away. If you do it subtly enough, it can work wonders.

I strongly believe it what goes around comes around. We had an SEN assistant say some truly awful things about my ds2 - really really WRONG. So, after a strongly worded letter to all and sundry (including Ed Balls, who was the Children's thingy at that time) and hey presto she was gone in a puff of smoke TA DA !!

[HelensMelons]

DLA tribunal a few years ago - won that - very nerve wracking.

About to commence battle with transport due to ds2 (asd/adhd) now being picked up and collected on main road in bus - nightmare. Normally he gets collected/drop off from house. Main road is extremely busy and have 2 other dc's to manage as well.

and yes, a touch of the poor me's as well!!

[AngryWasp]

Ah HM The poor me's set the scene!

I LOVE hearing these. It makes me feel both that I am not alone, but also that I'm not the only person asking for x, y, z and that what I'm asking for isn't unreasonable.

[2shoes]

after a bit of a whinge and a lot of moaning, I got a substantial increase in our respite.

[HelensMelons]

That's true, I don't feel that what I am asking for around ds's transport is unreasonable. I just want him to be safe.

Arggggghhhh!

[flyingmum]

I got the LEA to agree to a special secondary school for son 1. They captitulated two weeks before the tribunal but didn't realise that I wasn't going to give up until I had worded the statement myself. I did. They gave in 24 hours before the tribunal.

Really worried I'm going to have to go through it all again for post 16 provision.

OH AND I got the LEA to fund 20 hours support for a kid I teach by writing the biggest fattest annual review report on the planet.

[AngryWasp]

2shoes Repite is on a backburner coz I just haven't got time to fight for it. We get zilch.

Poor me!

flyingmum Cool about the fat report. I'm planning for my parent advice for statement to take longer than a month for people to read.

I love to hear the nerves of steel stories like yours too. If you have a 'reputation', perhaps you'll get what you need at post 16?

I phoned the Ed Psych today and was told she doesn't work on Thursdays so got to speak to the Team Manager, and I could tell from her voice that she was very excited to speak to me. I think my name is on their wall with darts in! - At least I hope it is!

[daisy5678]

1. Got a Statement, despite being turned down initially twice.

1. Got the Statement to be made full time, despite being told that nobody could ever have that here.

1. Got full DLA, via 18 month row with DWP and 1.5 Tribunals (one adjourned)

1. Got compensation and apology from DWP for breaking the law .

1. Got Social Services assessment and support, despite being fobbed off initially.

1. Got SALT and OT support, despite school claiming nobody ever got any.

But it has all worn me down and nearly killed me!

The most horrible battle of all is only half won:

1. Kept J in mainstream despite HT wanting rid of him

Cos I don't think (if he comes back - he's been off since January) he'll give up till he gets his way .

Battles are important to win but, IME, you really do have to pick the ones that are most important or it is easy to be consumed by an obsession with getting one over on 'the authorities'.

[AngryWasp]

Good reminder giveme

btw, how in the world do you get support from social services? I've had an initial assessment, changed social worker because her assessment was rubbish, had another assessment, - still no help, but patronising insults about taking parental responsibility etc. and an offer of them to chair a meeting between me and my dh to help us put into place an action plan of how he can help me more because we don't need respite, we need organising. again.

How?

[daisy5678]

Ummm...hate to say it, but I think me being single helped (and I have heard it is harder for couples to get help) and the fact that he is so well-known for the behavioural stuff and has the highest Statement funding of any mainstream school child has made him well-known in the Disability Team.

The initial assessment was the battle; the respite followed on.

As your ds is so young, not sure what respite they would offer - J's takes the form of going out and doing stuff with a worker - overnight was offered but I turned it down.

What are you looking for in terms of support?

[AngryWasp]

Looking for an evening a week to either talk to my husband before he forgets what I look like, or get on with the reading necessary to fight my ds' case, oh and perhaps look at our finances, or browse the yellow pages to find someone to fix our central heating, or someone to fix our collapsed drains under our extension, or get some transport for us to get to the support group they keep dangling under our noses but we can't get to because we don't have our own transport and the county buses only take folded prams, which is okay but I have an autistic 3yr old bolter and a heavy 11month old, or someone to give us the time to research and buy a stairgate for the top of the stairs, or the time to research getting someone in to fix the shower/bath as we haven't had one for 8 months etc etc etc.

[AngryWasp]

I just want someone to give me some time really!

[AngryWasp]

Oh year, and for someone to look after the kids so I can learn to drive so I can access support groups, get to ds' appointments etc, or for someone to look after dd so she isn't being a pain during ds' appointments.

[5inthebed]

I got the SENCO to accept DS2 into nursery attached to DS1's MS school. Only after I threatened to take her to board of directors for our regions SENCO's. Not only did he get an unfunded 1:1 for his whole time at nursery, but he also has a full time funded 1:1 for reception! Go me!

AW, have you applied to the Family Fund for driving lessons? I got driving lessons awarded from them in April/May this year, and will be sitting my test soon (gulp)

[daisy5678]

Angrywasp did you have a carer's assessment?

[AngryWasp]

Yes, - they came back and did it seperately, but used the same eligability criteria, - but we're not eligable, - although they won't tell me why. Just say if we are still not happy then they will do another visit with DH there to tell him he's not supporting me enough and help us put into place an action plan to address these things without their support.

5 One of our biggest problems is that we can't claim anything because we just have no idea of our financial situation. We are probably entitled to loads but unless someone gives us some time to find and go through our paperwork and bills we just can't fill in their forms (oh and we need time to fill in the forms too of course).

[daisy5678]

They have to show you the criteria. They tried that one on me and then admitted that they had to and, erm, well, sorry for, erm, not doing it.

[AngryWasp]

Poor me

Anyway, - back to the battles:

The Paed told me that she was no longer going to do the diagnostic assessment because we had a private diagnosis, but I wrote her a long email explaining why we still wanted it to go ahead and she agreed to do it after all yay

[AngryWasp]

They said the criteria was exactly the same as for the initial assessment, and we weren't eligable, - even though I look at it and can plainly see we fit it .

Don't worry, - I have got a list of malpractice all stored up about the way they have conducted themselves, and as soon as they give us an hour of respite I'll strangle them with it! (Actually, I've got to concentrate on the parent advice for the statement for the moment, - then I'll be on to them)

[daisy5678]

Pipinjo hope it goes well!

[MumOfThreeMonkeys]

1. got support from social services (6 hrs per week dd is taken out by a family support worker) and was put on a waiting list for respite. i was initally told that i couldn get reffered to ss because no dx yet.

1. got statment (only last week) dd is starting p1 next week in the special school i wanted her to go to.

1. got full DLA

1. got melatonin + weighted blanket = SLEEP!

1. got genietic tests ( which results are due this morning)

1. got asd assesment which is next week ( my quest for a dx will be won!)

i got all this done since january
just afraid of what im gonna do when all the battles are won( or will there always be a battle with a sn child?)

[vjg13]

1. Had my daughter's SALT increased from once a term to twice a week (a one to one session and a group both with a SALT).

1. Got a place at a non-maintained special school outside the LEA.

1. Kept the same transport and escort for the last 3 years and will fingers crossed for the next 3.

Numbers 1 and 2 took about 2 years and has exhausted us both. Number 3 took about 6 phone calls and a letter to head of service.

Good luck everyone!

[mysonben]

DS had his first lot of salt sessions in august 2008 (he was 2.9), we were told next lot of sessions sometimes before Xmas.
January came ...nothing!
Phoned them up, they said "sessions by april"
April came...nothing!
In May DH got p* off waiting , he started ringing them up twice a week, making himself known to all.
Hey, presto in June we got a letter confirming a place for DS for the next lot of salt at the end of june.
Also they 've put him forward for a place in a language group 2 mornings a week.
Should know if he gets a place there soon.
Fingers crossed!