Yesterday I went to the Autism show in Manchester.
I set off from home at 7.30am and headed to the train station.
Looking forward to rare “me” day I settled into my seat with a coffee and a copy of trail magazine…..bliss.
Having navigated my way across Manchester,feeling a little like Heidi must have felt the first time she left the mountains, I arrived at “Event City” just after 11am.
I had come prepared with a list of the speakers I most wanted to see(never would have dreamed of being so organised pre Evan!)The first not starting for an hour giving me plenty of time to get my bearings and have a good look around.
There were several specific exhibitors I wanted to speak to,seeking information to pass on to friends not able to visit the show.
Spoke to some fantastic people, got some great information..OK OK and got to play with some brilliant sensory toys!!
In the crowded Autism Matters Theatre I first listened to Janis Sharp, Gary Mckinnons mother speak about her son and the 10 year ordeal he and the family have endured..
Then the inspirational story of Anna Kennedy OBE the brains and driving force behind”Autism’s got Talent”
Anna re mortgaged her home to open a school for children with autism when her two boys ,Angelo diagnosed with aspergers aged 4 and Patrick with autism age 3, were both failed by the education system.
Martin Finn opened the show. Martin is a non verbal young man with severe autism who has an amazing ability to sing. I was delighted to meet both Martin and his parents after the show.
I spent 6 hours at the autism show..I am not sure I “learned” anything new but I certainly came away with some more signposts.
I spoke to a solicitor who specialised in Education Law regarding the school experiences Evan has had. The very sad fact is…our experience was not new to her at all!
I left the show and headed back across Manchester to catch my train.
Rather than feel uplifted by my day I felt quite the opposite.
It is normal to be worried about the future of our children..that is part of the right of passage of being a parent..
But having a vulnerable child with an invisible disability is simply terrifying.
On my journey home my head was spinning with thoughts
“I am not doing enough.””I need to be planning for his future.”
I felt trapped and useless.
As a single parent I am caught in a catch 22
I can not work because my child has been failed by the education system and I am now not only his parent and carer 24/7 but I am also his teacher.
The responsibilities are huge and heavy.
Normal daily activities are not possible,everything is magnified.
Running against the clock to teach him life skills that will get him through and help him navigate the minefield of life,a clock that is ticking so loud I often can’t hear myself think.
I have no way that I can see of making his future financially secure.
But I can’t give in to the terror and dread I feel that keeps me awake at night and gnaws away at me during the day.
I would simply drive myself mad.
So after a momentary emotional blip that had me teetering on the edge of a pit of depair….
I got off the train in Penrith and I ran towards my soon to be 10 year old son.
More determined than ever to do whatever I can to make his road through life as easy as possible.