It took me a while to decide whether I was going to write this post but I’ll try and summarise our history briefly for you as perhaps it will add context to our current story. NB. It’s a bit boring.
Adam and I (Jenn or Skip, I answer to both) met in 2002 during that long glorious summer* you have after leaving school. We were 16 years old.
*I don’t remember it being at all glorious but it sounded good.
Alastair came along in 2004 when I was just 17 years old and Adam 18. I remember the midwife saying “you have a perfect baby boy right there” I used to think she lied but now I know she was spot on!
What do I remember about those early years? I remember being driven to diminish the stigma that sat alongside teenage pregnancy and parenting. We studied and worked every hour we could in order to keep a roof over our head and every spare pence went on creating memories. (Our first holiday was a £9 Sun holiday to Blackpool that my Nanna saved the coupons for!)
We were both super shy so this is something we have worked on tirelessly. We needed various health professionals to sit up and listen to these two kids sat in front of them demanding the help their son required. Our parenting style has never really changed, we were young and wanted to have fun so just made sure we took Alastair along to everything we did so he got to experience it too, and that has continued throughout the 15 years.
Alastair was diagnosed with Angelman Syndrome (AS) on the off chance at 18months old. The following day we hopped on a plane to Ibiza.
Fast forward a little, Adam now works in IT (infrastructure if anyone even knows what that is, I don’t) and manages a team of 12. He sits on the gender forum and strives for equality in the workplace. Adam rides a fixed gear cycle, has a moustache, drinks a long black coffee from fashionable independent coffee shops and has his own sourdough starter BUT he ‘definitely isn’t a hipster’.
Me, I recently gained an MA in Graphic Design & Art Direction. I spend half my time as a freelance graphic artist specialising in publication design and I am a trustee and newsletter editor for the national charity AngelmanUK. My personal work focuses on equality and inclusion and I bloody love a good zine. I use dance and travel as a way to unwind and drink far too much red wine.
Alastair has just one year left at school! We say he only goes to school for a rest anyway. Alastair took his first steps at age 11 yet only learn’t to stand still at 15. Sounds about right, I don’t think we’ve ever given him the opportunity to. Alastair loves kayaking, swimming, riding his trike but above all live music. He’s a well known face on the Hull gig scene. He’s currently growing out his hair to create move movement when he dances.
I’d be lying if I said our journey was easy. We’ve had to fight a lot of fights, I’ve attended more appointments and filled in more lengthy forms then I care to even admit to myself. Ironically, what I have always struggled with the most is the lack of privacy. We’ve had to explain ourselves over and over and over, everyone writes reports and pretends they know about Alastair after meeting him (or not in some cases) less than half an hour ago.
I’ve watched Alastair battle seizures and I’ve watched him self harm when he can’t communicate what he wants to. I have never heard him say ‘I love you’
We are currently in the transition process between children and adult services. It’s daunting but we are educating ourselves in areas of law, local authority procedures and human rights that I never wanted to learn.
But above all we are happy. We have all grown up together and we will continue to continue to squeeze as much fun out of life that is humanly (and AS) possible.
And I’d rather play here with all the madmen for I’m quite content they’re all as sane as me
David Bowie
I think thats a brief overview, if theres anything you want me to talk about please do leave a comment.
Smiling and Waving 