Thursday, 14 June 2012

Sky News bullying feature

It was a few weeks back, but we just wanted to show off the great feature on bullying on Sky News featuring ambassador Deb and her son, Charlie.

It's a fantastic piece, and Deb and Charlie were brilliant, I'm sure you'll agree!

Dads in Scotland raise awareness

With Father Day (17 June) just around the corner, Ambassador dads in Scotland have been raising awareness of autism.   

Glyn Morris from Moray told us his experiences of caring for his 13 year old son Gregor who has autism

“Being a father of a child with autism can be challenging, but also incredibly rewarding. If another dad happens to drop into conversation that his child is on the spectrum, you suddenly feel an overwhelming connection. It’s like finding a long lost brother. Our children see the world very differently and every day we do our very best to support them and see the world through their eyes.

I would like all Moray fathers of children with autism to know that you are not alone. Many dads are experiencing similar challenges every day. Getting the right support at the right time can be a real struggle, but it is out there. 

At first, Gregor seemed to develop as expected. He was hitting all his milestones. He could say ‘Da’ – which is a fantastic moment for any father. Then suddenly, around 3, he started to regress. He lost his ability for speech and hasn’t said ‘Da’ since. 

At one stage he was getting up over 20 times in the night. Many people with autism rely on predictable routines to help make sense of the world, and Gregor would find changes in his routine distressing and disorientating. There would be 'meltdowns' in the car if we continued driving and didn’t turn off into a relation’s home as expected. Gregor also experiences huge sensory challenges and couldn't stand to walk on sand or even grass in bare feet. A simple thing like a visit to the hairdresser’s was torture. Loud noises were unbearably painful and disorientating.

These days, Gregor is a much happier, more laidback teenager. I couldn’t be prouder of the way Gregor works every day to overcome the challenges of his condition.  Some people with autism find socialising very challenging and disorientating, so we are very lucky that Gregor absolutely loves meeting new people and spending time with friends and family. His smiles and laughter are just infectious, and he has such a positive effect on everyone he meets.  He loves swimming, horse riding, car trips and anything with wheels attached. He has an extraordinary photographic memory and a fascination with numbers and jigsaws.

The right support at the right time at school, and calm perseverance at home, has made a huge, positive impact on Gregor’s quality of life.  So much credit has to go to my wife, Jennifer, who is not just a fantastic mum, but also the most patient and thoughtful person I know.

Gregor has very little speech, and mainly communicates by making vowel sounds. He has limited muscle control and movement and still needs constant care, but he has shown amazing progress.  He rarely wakes up in the night these days, and copes very well with changes and unpredictability when they are explained to him in advance.

Being a father of a child with autism does turn your world upside down but, I honestly, hand on my heart; feel incredibly privileged to be Gregor’s dad as he is such an amazing individual.” 

Ambassadors Kevin Foley, James Parker and Norman Gray also told their stories to the local papers.  

Tuesday, 12 June 2012

SEN campaigning progress for Victoria

I'm Victoria and I joined the AAN in November last year.  I live in Hurstpierpoint, with my husband Ged and our 3 children, Joseph, Daisy and Archie.  Joseph is 7 and he has autism.  I've been asked by the AAN to say a bit about what I've been up to since November, it would be great to hear your experiences as well - it's inspiring to think there's a group of us out there working away for autism.

Since becoming an ambassador, I have been campaigning on the Government's proposed reform to the Special Educational Needs and Disability system - change is potentially good, but we need to make sure the Government gets it right for people whose lives are affected by autism.

At the end of last year, I finally got to meet my MP at his surgery.  I had been in contact with his office on the SEND reforms since the summer, but it took until December for us to meet.  My MP is a minister and it was initially hard to get his attention.  Tenacity proved to be the key, as did trying to forge some kind of relationship with his office (they got to know me quite well in the end!), although I admit, it was sometimes hard to balance persistance with politeness...!
Before the meeting I took some advice from the AAN and got myself prepared - I'd never met an MP before and I was nervous and keen to make sure I did a good job.  The best bit of advice I got was to write a short note which, would detail all the issues I wanted to raise and the points I wanted my MP to action after we had met.  I took this note with me and used it to refer back to and keep the meeting on track.  I also emailed a copy to my MP's secretary before the meeting, she printed it out and he was able to read in a little about the issues I wanted to discuss - it also gave him something to keep in hard copy to remember me by!  For moral support but also to add impact, I brought a very good friend of mine to the meeting.  Her family life is very similar to mine and together we were able to emphasise both the significance and prevalence of our common experience.

The meeting went well.  It seems to me that the Green Paper provides a great opportunity to improve the provision of services for local people affected by autism and it turns out that my MP has had lots of other constituents asking for his help and has become very sympathetic.  I told him about my experiences, how complicated life can be for Joseph and how we have struggled for diagnosis and to access services.  I also outlined the main Green Paper proposals and how the reforms could, in my opinion, best serve the interests of those affected by autism.  I was amazed by his interest and knowledge, we had a good chat about the problems we face and he listened well. At the end of our meeting, he agreed to coordinate a round table of parents and families, health care and education professionals, in the first of what we're hoping will be a series of 'autism summits', which will take place at Arundel Town Hall on Friday 29 June. 

The idea of the 'autism summit' is to bring together all kinds of people who have a connection with autism - mental health teams, social workers, teachers, Children's Services, people with autism, parents and charities - for round table discussion and information sharing.  We hope that as a result of these meetings, my MP will be able to feed back some really useful information to Government, as it progresses the Green Paper.  West Sussex is also a Green Paper Pathfinder area, so it's going to be a really useful forum to find out how the Pathfinder Team has got on.  We also hope that these sessions will help improve local services for those affected by autism, by highlighting what is being done and where gaps remain.  It will also be a chance for parents to share experiences.  The 'autism summit' will include 5 speakers - representatives from social services, mental health services, the charity Autism Sussex and members of the West Sussex County Council Pathfinder team.  I'll be there representing the families and the NAS and I think someone from the NAS will try to make it down.  There'll be a Q&A session after the speakers have finished and I'm hoping to see lots of people chipping in from our local NAS branch in Worthing.

After a difficult start, I've become really impressed with the commitment that my MP has shown to the issues I raised and, about a year after I first contacted his office, I feel like something might finally result.  I hope the summit is a success - I've never done anything like this before so if any of you have advice or ideas, they'd be very gratefully recieved!  Fingers crossed for 29 June.  I'll keep you posted."