#ThisIsMyChild MumsNet Special Needs campaign

Tania writes…

MumsNet have today launched a new “myth-busting and awareness-raising” campaign called #ThisIsMyChild.

thisismychild-250It’s been launched in response to requests from MumsNetters and supported by input from some of the leading charities in the field.

Its aim is to support parents of children with additional needs, inform everyone else, and open up a conversation about how we can all act to make life easier for everyone caring for children with additional needs.

I am delighted and very excited to have been asked to support the campaign and will be picking my favourite posts from a Linky being launched on Tuesday – so standby for that.

Debs and I will  also mention some of the posts here on SNJ as the campaign progresses.

For this campaign to be a success MumsNet need it to reach far and wide, so please share as widely as possible – via Twitter (@MumsnetTowers), on Facebook , Google+ and anywhere else. You can use the HashTag #ThisIsMyChild on Twitter, Facebook & G+ too.

Already up is a Gallery, Mythbuster, Strategies and Facts and Figures.

The Mythbusters have been collated with help from campaign partners, Every Disabled Child MattersContact A Family and Mencap, and with help from the National Autistic Society.

The strategies is worth reading: I recall once, after the committal of my mother’s ashes, far from home, we went for a pub lunch and ASD Son2 was upset, refusing to eat or drink and had his head down. A woman across from us stared and tutted disapprovingly the entire time until I had finally had enough, got up and challenged her. She replied that she was actually staring at me (which she wasn’t)! Rude and a liar! She soon left. It still makes me cross to think about it, six years later.

Anyway, the campaign is definitely worth joining in with, adding your special needs blog posts to the link when it’s launched,

In case you didn’t know, MumsNet has a whole section on Special Needs with lots of information.

Of course, bloggers who write about their children with disabilities are every week trying to raise awareness, so it’s great that MumsNet is giving all those blogs a boost and helping the cause in such a high-profile way.

If you haven’t been to the MumsNet site in a while, you should pop over as it’s not just for mums of babies, but has an enormous amount of information on parenting, skills & careers (MumsNet Academy) too.

blogfest_headerWhile we’re on the subject, I’m thrilled to say I will be on one of the panels at MumsNet BlogFest joining lots of high profile speakers at the event such as Prof. Tanya Byron, one of my favourite writers, Lionel Shriver, and Louise Mensch. (I’m sitting here going ‘Lots of high profile speakers….and me.)

It takes place on Saturday November 9th. I’ll be easy to spot, probably in the wheelchair with long-suffering Debs pushing. Please say hello if you’re going – I’ll be more scared than you!

Inspired: Son2 meets Dr Temple Grandin.

Last night we had the privilege of going to see Dr Temple Grandin, the autistic woman famous for inventing humane animal handling systems. Dr Grandin is also a renowned expert on autism and Son2 was very keen to hear her speak.

So off we went to Reading, but by the time we had arrived and found the Town Hall, Son2 had become overloaded, fallen into intractable silence and could not be persuaded to eat or drink anything. This was not looking good and I wondered if we should just go home. But I had only booked because he had wanted to go and I knew hearing Dr Grandin would be important for him.

Dr Temple Grandin & Son2

Dr Temple Grandin & Son2

There was a while to wait before the show started and I offered Son2 some cash to see if he wanted to get anything in the cafe. Off he set, with me trailing behing him. His eyes alighted outside the auditorium on Dr Grandin signing books. He said nothing and we went down to the cafe where he could find nothing to his liking. Back we came and he slowed down at the book buying table. I asked him if he would like a book and to get it signed. He would.

The queue had diminished and we got the last book. Son2 met Dr Grandin for a brief moment as she signed his name and hers and he went back to his seat clutching his signed copy. He managed a small drink and a bite of his sandwich. I knew that as soon as she started talking he would be transfixed and so he was, for a full hour.

Dr Grandin spoke about how important it was to engage young people with autism, for them to participate through common, shared interests and how to teach them bottom up, not top down. By this she meant using specific examples to teach concepts, to teach the child according to the way he learns. She said it was also particularly important to discover the root cause of a child’s problems, whether it was biological, sensory, fear/anxiety or a hidden medical problem. It was important to give an instruction for the type of behaviour you want, rather than a negative instruction.

Dr Grandin said that much more research needed to be done into sensory issues, which Son2, in particular, is very sensitive to. She also pointed to how so many young people with autism were without basic skills and how fifties-style parenting, emphasising behavioural expectations by way of routine, benefitted young people with an ASD.

Her advice to teenagers with ASDs was that if you find it difficult to interact with people socially, then impress them with what you can do – build up a portfolio of the things you are good at and play to your strengths because talent gets respect. In this way, you can find a place for yourself in society.

Dr Grandin has a new book out, the same one that Son2 has today taken to school. It’s called Different… Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger’s, and ADHD.

We didn’t stay for the Question and Answer session after the break – Son2’s attention was exhausted and so was he. But he took a lot from it, I could tell. Dr Grandin is very similar in her thought processes to him and I believe he was inspired and comforted to realise that so many people had come to listen to someone just like him.

Before we left, I asked him if he’d like his picture taken with Dr Grandin – because I knew he would. I explained to Dr Grandin that Son2 now needed to go home but he would really love his picture with her. “We’d better do it right now, then!” she said and Son2 quickly went to stand at her side. It’s not a great quality image, but I know it’s one Son2 will treasure.

On the way home, he was ready to eat his sandwich and have a proper drink. It hadn’t been an easy trip, but I know that he was satisfied and that’s enough for me.

New Autism Act Passes Final Hurdle

The National Autistic Society is today celebrating the passing into law of the Autism Act. The following is from their website:

The Autism Bill has made it through its final parliamentary stage and will now become the Autism Act. The Act is the first ever disability-specific law in England.

The Autism Act started out as a Private Members Bill, drafted by The National Autistic Society (NAS) and taken forward by Conservative MP Cheryl Gillan. The Bill was backed by a coalition of 16 autism organisations and had overwhelming parliamentary support, being backed by all the main political parties.

The adult autism strategy

The Autism Act will guarantee the introduction of the first-ever adult autism strategy, which will set out how local services should be improved to meet the needs of adults with autism.

The strategy will cover a range of issues including health, social care, employment and training and, crucially, will be accompanied by guidance which places a legal obligation on local authorities and NHS bodies to meet certain requirements.

The strategy will be published by April 2010 and the accompanying legal guidance no later than December 2010.

You can read more here

Congratulations to the NAS and Cheryl Gillan MP.