AIBU to wonder why the professionals don't tell you anything??

[nappyaddict]

Without Mumsnet I would be totally clueless. It's no wonder people don't get the help they should. It really annoys me. They must know there are things in place to help parents of disabled children so why do they choose to keep such things a secret? Surely it wouldn't be too much trouble to point people in the right direction? There are so many things I have found out about through friends and mumsnet and not one of them was mentioned by any professional we deal with apart from getting help from the Early Years team.

When DS first came out of hospital I went round begging friends and family to borrow their baby stuff because DS couldn't even sit up anymore and the hospital nor HV seemed to know who could help me get equipment for him. Then someone on here told me about the Disability Living Foundation.

No one told me I could apply for a statement for DS myself, I thought I had to wait til he was in nursery, which now means we won't get it in time to apply for a school place which means he won't get priority when he should.

No one told me I could have been getting DLA even though he's under 5 because for some conditions they pay mobility for 3 and 4 year olds and encephalitis is one of them.

I have discovered through mumsnet some water and energy suppliers offer lower tariffs, you can get a reduction on your council tax and can get cold weather payments and the warmfront grant if someone in the household gets DLA. I have also found out that you can get a free bus pass and a rail discount pass and that if you get the mobility component you can sometimes get free road tax.

Through volunteering with homestart I have found out about The William Cadbury Trust, The Esmée Fairbairn Foundation and The Frank Buttle Trust who donate money to families (not just ones with SN kids) if they think they need it.

No one told me about the family fund, portage, the help! and early bird courses you can go on, about the SN mobile toy library or that I was entitled to a major buggy from wheelchair services. I could go on and on but I think that's enough ranting for now!!

I totally agree nappyaddict. I wish I had known about MN a few years ago when I had so much trouble with school - DS now needs counselling for the trauma he suffered there. We trusted the school to do the right thing but if I had explained some of the problems on MN at that time I expect a lot of bother could have been avoided as I would have known what school should have been doing! Thankfully now I am always reading the SN threads here and have learnt so much I feel in a much stronger position to take on the powers that be. Senco has raised eyebrows several times now when I have mentioned things I have learned from MN and think she knows I'm not going to be a pushover now

Hi, in my area we were so fed up about poor communication from professionals we were inspired to start a parent-run forum and website to share our hard-won knowledge with other famiies. If you live in the UK you might have something in your area, check outwww.cafamily.org.uk/families/meetotherparents/localsupportgroups.html

Hello

We're just starting out here - and so far the only decent information I've found is through this site! Something is seriously wrong somewhere - why is it so hard, when things are already so hard?

take care mx

Isn't it sad? This should be somebody's job, really it should. It's not just about the money/benefits etc. it's also about knowing there is help, there is support, there are people who understand condition XYZ - you are not alone.

I've learned far more on here than RL .

Some more helpful things I have recently found out about are

CAF who told me where my nearest support groups were,

disabled go,

National Association of Toy Libraries, who I contacted and they told me of all the local SN toy libraries,

The Kensington Foundation who do respite breaks and crisis grants. They also have a toy library if you live local to them (Blackpool)

The Daisy Chain Project They do holiday activities and they have a farm, sensory garden, wetland and vegetable garden. There is no email address on the website at the moment, but once there is I will be contacting them to see if it is open during term time as well to the public or if you can book to go. If you live local (Stockton on Tees) then they have a sibling group, parent and toddler group, counselling and weekly talks with creche.

pure sport who do sports sessions for kids with SN and also I contacted my local rugby club who said they could take children with SN so might be worth a shot.

Oh and as for the Maclaren Major, I went to Argos and they do a framed raincover that isn't marketed as one that fits the Maclaren Major, but when you open it up and read the instructions it mentions the Maclaren Major as one of the buggys it fits. It was 12.99 or 14.99 and folds on the buggy too. Up yours Maclaren

Have also found out once a week our local Children's centre has someone there for 2 hours in the afternoon from the CAB who can advise you about all sorts of things. It's worth finding out if your children's centre has something similar in place.

Hiya. Can you ask mumsnet to include your OP in the special needs help section? I'd love to hang onto it for reference but think I'll lose it amongst other threads.

Rather than just saving the OP, you can "watch this thread" then if I update things on it you will see those too?

Just found out about Dogs for the Disabled and Support Dogs

I agree with you so much-I think everything I have found out about has been through other parents (and there are things on your list which I still don't know and will be investigating) The thing I was told about when my ds was very young was about DLA and carer's allowance-this was from a consultant who also told me the majority of couples with a SN child end up divorced-thanks for that....