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!!

Nappyaddict im still about 10 steps behind you guys, i hadnt heard about most of that until now!

I would totally agree i have learnt more and received more support and advice from MN than i have from all the 'experts' rolled into one over the last 3 and half years.

yanbu. the ed psych didn't even know about the existence of the local ASD parent support group

Starlight Where is the key worker from? Is it the same thing as a family link worker?

With the council tax thing you have to prove that you could live somewhere smaller if your DS didn't have a disability. For example if they are in a wheelchair it's easy to prove cos extra space means more room to manoevere. Does DS have his own room? If so you could say it's cos DS needs to have his own room. We have a playroom which we put loads of sensory stuff in so that's how we got it.

Our Keyworker is from Inclusion support, and she is very good, but her knowledge of things is a bit vague - she mentioned abut the family fund and warm front when our boiler broke, but she didnt really know alot about them.

I agree it is extremely hard to find out about services and entitlements - never mind get them! I think it might be because there is no dedicated service to bring things together. Everyone in hospitals are so specialised and there is a bit of a culture of not 'overstepping' ones place. Our paed mentioned DLA when ds was nearly 9 ( yes I had heard about it on mn by then) but I feel terrible guilt for all the things we did not do - out of ignorance or lack of money.

True Starlight! I certainly have anger! (I can console myself that I did lots of things right by sheer chance and trying to do my best- we saw an ABA trained sn SALT privately who taught me loads before I knew ds has autism or had even heard of ABA! Twice a term was all I could afford so she taught me how to play and motivate my child!)

Thought I would share with you all this quote from a newspaper article I read some time back:

"We should not be mourning for an imperfect child, but for an imperfect world. They are a gift. So we just need to find the skills to get them through this imperfect world"

Whenever I am feeling particularly frustrated with the whole thing I read that quote and it makes me feel better.

BTW Starlight (and if anyone else has a child with ASD) have you heard about The Transporters? It works on the same reasons why a lot of ASD kids are obsessed with Thomas the Tank Engine and encourages ASD kids to look at human faces via a fascination with vehicles.

I don't think Transporters is that great - Chuggington is much better if you want a change from the eternal Thomas (blessed be his name)

And I bet a professional would not tell you that !

Ooooh thanks will give Chuggington a go.

Chuggington is Fantastic - we love Wilson in this house and I am hoping they release the toys be DS's birthday. Its on quite alot on CBeebies - 8.10, 12.10 and 5.25

We have just found out that some Odeon cinemas do an Austistic Screening once a month so am just emailing our local one to see if they do it or not. It says "The films are aimed at the family audience, certificate (U) or (PG). The films are shown without adverts and trailers to shorten the amount of time spent waiting for the film to start. If the film is loud, a reduction in the volume can be made and it can be played with the lights up.

The screenings take place on the first Sunday of each month, starting at 10.30am (doors open at 10.00am). Children: £3.50, Adults: £4.50. Tickets are available six days before each screening. The Odeon actively promotes the use of Cinema Exhibitors Card, which entitles a parent or carer to free admission at any cinema in the UK."

Well the Maclaren Major came without any accessories. The man who dropped it off said you have to contact this company and buy them all. Raincover and sunshade is £55 and shopping basket is £20 which is a lot cheaper than all the other websites I've looked at online. The lady on the phone said they didn't supply the chest pad, seat cover or lateral supports but I could get them free from wheelchair services if we had a clinical need for them (why couldn't wheelchair services have told me this in the first place?) So anyway I rang wheelchair services and I said I need the seat cover because DS often wets through and it takes days to wash the buggy and dry it, the lateral supports cos he needs support when sitting and he keeps getting his arms stuck in the hole between the main seat and the buggy frame and the chest pad because the harness digs in and he keeps trying to take it off. All ordered without any problem after spending 2 hours on the phone phoning round various numbers they kept passing me on to.

Have seen raincovers and baskets surface periodiocally on ebay for mcclaren major nappyaddict

Me too but the last raincover, sunshade and basket went for £63 and it only costs £75 new.

Grrrr after ranting to a friend about the lack of speech therapy available in our area she told me about Cerebra. I wish someone had told me about them before!!

I have rung them and they can help me fill in DLA forms, possibly get me a grant for a bouncy castle and car seat, give me a voucher for £500 worth of SALT, give me a voucher towards paying a solicitor to set up a will, give me use of a postal lending library and help me apply to use their holiday home in Wales for 2011 (they are fully booked until then)

BTW for anyone who has an ASD child and is struggling to get a blue badge ring NAS and they send you a template letter to send off to your council. We have now got one with no bother.

Yay got 2 trips booked this summer with Cerebra. Can't wait!

Biggest thing I learnt I'd statements and how to tell that. Lea are pulling wool over my eyes,that would be every tim ethey say write anything then

Brilliant about the holidays Nappyaddict. Might try the blue badge help (ds has ASD and LD but only LRmobility - really could have done with a blue badge up until now - ds is just beginning to learn some road awareness!!