Isn't She Talking Yet? - Times Online - WBLG

If you're in Brighton

or thereabouts, and don't yet know about a fantastic-sounding special needs playgroup called Sweet Peas, then call 01273 236366 or email amandae.kelly@ntlworld.com for info.

I really admire Amanda Kelly, who I know from her previous incarnation on a glossy magazine, for having the oomph to start her own playgroup, along with a friend. It's something I've thought of doing myself, but the logistics and time involved kind of do my head in. One day, maybe...
 

Please sign this...

Thanks to Steve Broach for contacting me. He is from the Every Disabled Child Matters campaign. This was set up by four organisations - Contact A Family, the Council for Disabled Children, Mencap and the Special Education Consortium. From Steve's email: "We have launched the campaign because at the moment there is a unique opportunity to improve the lives of disabled children, as the Treasury are currently leading a review of services which could see more money invested in support for families. At the same time, our campaign is launching next week a private member's bill - the Disabled Children's Short Breaks Bill - that would give families with disabled children a right to vital short breaks from caring.

"Our campaign currently has 6,000 parents, professionals and disabled people, children and adults, signed up to support our work. We want that figure to reach 10,000 by December, to get the weight of numbers that will give us the best chance of convincing the government to act. Anything you can do to support the campaign and spread the word would be hugely appreciated."

Well, what I can do is urge you to go here and add your name to the form you'll find on the Home page. It's a really laudable campaign, and they only need another 4,000 signatures - which they'd get in an instant if everyone reading this signed up. Stop reading! Go over there now! Thank you. 

Help from Mencap

I think my correspondent is right about the name 'Mencap' putting people off slightly. It shoudn't.

The picture is of Damien Hirst's Miss Charity, 2002.

When I read your article about parents feeing so isolated I felt I had to write and say that there is some help out there. I'm a family support worker at a local branch of Mencap. Lots of parents shun our organisation because of the old fashioned name. I'd like to put in a plea to all parents who have a child with special needs NOT to be put off! We can help with claiming benefits (I spend at least 2 days a week completing Disability Living Allowance forms!), finding specialist clothing, holiday destinations, helping parents through the education minefield, or just be a listening ear.

Most people think of Mencap as a large nationwide organisation. This is Royal Mencap - however there are hundreds of local Mencaps all around the country who raise there own funds and spend the money on services for their local families. You don't have to be a member to get help or information from us - we try to help all callers. We don't pretend to be able to solve all difficulties but we like to think that we can take some of the strain from parents by offering practical support and information. We are a lot less scary then Google!

Gill Eldridge
Senior Co-ordinator
Children and Families
Bromley Mencap

I keep seeing newspaper ads...

...by charities such as Operation Smile . This charity carries out cleft lip and palate surgeries. They have a medical team of volunteers - ie kind medics doing this in their spare time - and go on missions thirty times a year in 22 developing countries. Each mission typically changes the lives of 150 children.

The thing about all of this is that one surgery costs about £150. And the reason I've got this charity stuck in my head is that that's pretty much what we spent on cocktails and a celebratory blow-out dinner last Friday night.

We were lucky that Nell didn't have a cleft palate - plenty of children with her condition do. She may very well have a sub-mucal cleft - we should find out in the new year - but that, at least, isn't disfiguring. I keep imagining what would happen if we were poor and lived in India, Colombia or Vietnam, and some kind soul spent the price of dinner paying for an operation that completely changed our child's life... Anyway, you can see where this is going. I'm going to come over all Bob Geldof. A hundred and fifty quid. I've spent that on shoes. If you have too - well, then, we're very fortunate.

You can donate online by clicking on this link. Thanks to Mark for pointing me in the right direction.

Lower limb disorders

of any kind, from hip displasia to missing limbs - basically anything that affects walking - is what Steps charity is about. They offer support and information, put families in touch with one another, and have an active message board.

DiGeorge Syndrome

Max Appeal , the charity which offers support, help and advice to parents of children with 22q11 deletion, aka DiGeorge syndrome, holds its annual conference in Leicester on October 21. Full details on their website, but the running order sounds very interesting - speakers include a cardiologist, a psychiatrist, an immunologist, and many others who have a special interest in the syndrome. (Also, any organisation that kicks off a conference with bacon rolls for everybody gets a major thumbs-up in my book). Children are welcome - there's a crèche - and there will be a party in the evening. I'm trying my hardest to re-jig my diary and get there, not least because I am fascinated by the way DiGeorge children all look different, but weirdly alike when there are more than three in a room.