Being 13

After I saw a post crop up from a year ago today I started reflecting on how our ‘next adventure’ (a phrase I coined for raising a teenager) is going a year on…
I think like any parent you always imagine your child’s first crawl, first steps, and first word…
Despite being diagnosed with Angelman Syndome at 18 months, Alastair crawled at 4 years old, took his first independent steps at 11 years old and began using an augmentative and alternative communication (AAC) tool aged 12.

Nobody ever imagines that their child would begin to regress.

This year Alastair has developed severe anxiety, this can be triggered from something as simple as not knowing what is happening or a busy social setting. Watching a child self harm and hit themselves in frustration is one of the hardest things I’ve had to go through. And gosh I know it hurts, he will hit, nip or head butt us too.
Alastair’s anxiety led tremor has become as debilitating as his diagnosis itself. It has stopped him ‘walking’ for months at a time, he will often drop when crawling and will simply throw his weight at you while stand transferring so you are left holding a 6stone, 5ft 2”, shaking dead weight.
Although Alastair is doing incredibly well with his AAC he can become incredibly frustrated when his body won’t allow him to press the right button or he is simply too overwhelmed with too much choice or not knowing exactly what each word means.
Despite growing rapidly Alastair hasn’t grown an inch in height, his muscles have gotten that tight he can no longer straighten his body. The botox Alastair has been having for the last 6 years is no longer effective, there appears to be nothing we can do to ease his lower limb spasticity despite nightly gaiter work and stretching. Again, this means Alastair’s mobility will regress. So this year has taught me that nothing is permanent, it has helped me look towards a more realistic future for Alastair as we move closer towards adult services.

All that aside let me tell you how that ‘next adventure’ is going for Alastair…

This year Alastair travelled to Switzerland where he was lucky enough to climb to see Glacier du mont-miné and Glacier de Ferpècle. Also to Arolla to see Mont Collon Aiguille de la Tsa and Pigne d’ ArollaHe rode to Cropton, North Yorkshire and back on a tandem where he spent the night Cyclocamping, clocking up over 70miles in just 2 days.
He FINALLY got to see THE GORILLAZ live at Deamon Dayz, their very own festival down in Margate. He’s also seen the Wild Beasts, Slade and more local artists, musicians and bands than I care to count.Festivals Alastair has been to this year are Viva Skeg Vegas, The Big Gig, Freedom Festival and Humber Street Sesh.He participated in his first bit of improv street theatre. He’s been to the ballet at Hull New Theatre and to listen to a choir at Hull City Hall.Alastair attended a communication conference in Coventry held by ASSERT where not only did we all learn vast amounts about AAC but he also got to spend time with many friends with Angelman Syndrome. Not forgetting an amazing walk at Dovestone Reservoir with special friends Rufus and Rhys.He spent a week living in the camper van in his second home, Bridport, Dorset and a long weekend in Otley exploring the Otley Chevin and Ilkley Moor.

Above all he is still that blonde haired, blue eyed boy who is always* (*sometimes) happy

So yeah! 13 was a pretty good year, the teenage years have started well(ish) and the adventure continues as Alastair turns 14 tomorrow!!….Someone pass me the champagne!