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Alex is my first child so to me he was always just ‘Alex’. A bit eccentric, pretty rigid in his thinking and yes, different to most other kids his age, but just my Alex. I remember a woman coming up to me at a playground and smiling and saying ‘oh your son has Aspergers too’ and being really shocked but also curious. I went away and read up on it and decided he definitely didn’t have it…….
Of course as time progressed it became clear Alex did have Aspergers and a diagnosis followed together with the tumult of emotions (everything from profound sorrow to absolute relief) that most parents go through when their parenting journey veers of its imagined course.
At this point someone suggested joining ESCAPE and I remember thinking I couldn’t possibly do that. It was a charity – it was for disabled children. I didn’t feel like I needed charity and in my head I had this fixed image of disabled children being in wheelchairs or with life limiting conditions. It was great it was there but it was very much for ‘other people’.
I think in hindsight this was all part of my mixed emotions around diagnosis and a kind of protective shock. Of course ESCAPE is for those children, very much so, but it is also for the children and their families with all sorts of other conditions – some of which are ‘invisible’ to the average bystander.
My first trip with ESCAPE proved to me just how much I needed them. I remember it so clearly. It was a simple coach trip up the M5 to see the Panto. Nothing major. I was still feeling this weird guilt that I didn’t ‘need’ this when I got on the coach and Alex was absolutely adamant he had to sit in the front seat at the top. This was his plan all along and it HAD to happen. I was swamped with anxiety but before I could blink somebody had given me a knowing smile and moved letting him sit there. And that’s when I felt it – this overwhelming feeling that I was amongst friends. That these people ‘got it’. Nobody would bat an eyelid if my children did anything a bit unusual or Alex decided he could only cope with the Panto from under his seat.
Sitting on that bus I started to cry. Just little tears sneaking out but they were tears of relief. I realised just how much strain and tension I’d been carrying around with me on every outing, every trip. But here, with ESCAPE, I could let it go. We could just ‘be’. We were the majority for once. We had strength in numbers and the rest of the world with its sometimes judgmental, impatient ways could frankly go to hell.
Since then I’ve been on lots of ESCAPE trips. There have been triumphs (Blackpool – some of my favourite memories ever including the group taking over the Sandcastle swimming centre and seeing the amazing staff helping every single child to enjoy themselves and be included), there have been disasters (err Weymouth Sealife Centre on my birthday where Alex decided he hated all Sealife and wanted to leave NOW for the entire day driving me to ask the cafe if they sold wine. They did not….) and moments so funny I can never forget them (being pulled to the bottom of a muddy rafting lake fully clothed somewhere near Swindon, also on my birthday, by an overly excited boy with Downs Syndrome. I was laughing so hard I honestly thought I would drown).
None of this could have happened without the amazing people that make up ESCAPE – it is not ‘just’ charity. Its a feeling, a movement, a very special place that moves wherever its people move.
Thank you to all the people, businesses and organisations that can and do give time and/or money. I can’t tell you how much of a difference you have made to my life and my children’s childhoods.
And if you’re reading this wondering if it’s for you – give it a go. You have so much to gain.
The ESCAPE Staff and Committee would like to wish you all a very Happy Christmas. We hope you enjoy everything that the festive season brings. With best wishes from us all.
Its all well and good having this flash new website, but we still have to maintain it. Here we are spending the day with the Noisy Monkey Team receiving training and learning (or not!!!) all sorts of strange language.
My first blog, lets hope I get better at this.