Stronger together

First of all, happy Mother's Day to all the mummies reading this. I am having a relaxing day, spending time with Bea and my friends from Slingmeet while James spends the day with his daddy. We seem to spend a lot of the weekend doing this seperate parenting thing - not what I expected when I got my first positive pregnancy test on Mother's Day five years ago, but sometimes things happen that you didn't plan for and didn't expect and certainly never wanted.

I spent yesterday in town at a conference run by the South East Regional branch of the National Autistic Society. I came home exhausted but exhilerated. I have attended a LOT of conferences in my time, and I can honestly say that this is the first time that I have literally hung on every word the speakers said. All the issues raised were so pertinent and it was an opportunity to learn about what is going on out there and also to network and meet other parents. One theme that ran through the conference was that in tackling autism, education, respite, support, research, funding and a myriad of other issues that we face, we are stronger together. The NAS is the voice of families and people with ASDs. If they are to be able to have any political kudos then they have to listen to the members' voices and present our needs to the people who hold the purse strings, the budget planners in the Local Authorities and the policy makers in Westminster.

I learnt a lot about the current campaigns the NAS is championing and urge you to click on the following link and help not only me and my family, but the thousands of other families affected by autism. The "I exist" campaign focusses on the plight of adults with autsitic spectrum disorders. A forgotten and neglected tribe, they have significant care needs which are rarely met. I cried when I first read the statistic that 92% of parents with an autisitc son or daughter worry about the future for their child once they are dead - I often worry about how James will cope without us, and the affect this will have on Bea if she is his only relative and has to care for him. How many other mothers of four year olds can say they have these thoughts on a daily basis?

Another presentation discussed the recently formed Autism Education Trust, which will focus on providing support within education for children with autsim. This will be across all educational settings and will include Early Years provision. This is an issue very close to my heart at the moment as I am struggling to find James an appropriate school placement for September. In all honesty, I need to find him an appropriate placement right now as he is struggling at nursery, mainly due to the environment. I am hitting a brick wall when it comes to moving him as there are no specialist placements available, even though his nursery have admitted that they are unable to meet his needs. This week I will be writing some stern letters to the LEA and my MP to speed up the process - I have been waiting over 3 months for a finalised statement following our review in November. If this conference has shown me one thing, it is that unless I start to make this a political issue rather than a personal one, nobody will listen. I will not take no for an answer and I will get James in a school that is right for him.

Hopefully my quest to educate James won't be as difficult as Anna Kennedy's - she had so much difficulty finding appropriate settings for their two sons that she ended up setting up a school herself. Hillingdon Manor School is actually one of the schools we are considering, and James may end up there if they have any places in the next academic year, so it was inspiring to hear her talk of the effort involved in this endeavour. Her book, Not Stupid is all about her experience and I have added it to my Amazon order.

So this weekend has reminded me of my voice - both as an advocate on an individual level for my son, but also as part of the NAS, a national voice for those of us that live with autistic spectrum disorders. We are always stronger together.