So here we are…

17,

the age I was when I had you.

This time last year we signed off by sharing our village, a group of our nearest and dearest sat round a long table eating, drinking and being merry. Little did we know that would be the last time we could do anything of the sort and that I’d be doing it alone for over a year….

So lets talk about how it’s been ‘Being 16’

16 began pretty normally, attending gigs, eating out, travelling around and getting a hair cut. (Wow, its the simple things you miss innit?)
Alastair joined a group called Loud Mouths, a group of young people with disabilities who met up monthly to learn about what affects them and to get their voices heard, despite at first being quite shy Alastair used his AAC to successfully talk amongst the group.

This coincided with Brexit, after discussing this with Alastair we decided he would hand make some badges but this time with the words ‘Ex-EU Citizen’ and a lonely star on them. We popped them up on instagram for £1 and Alastair would make them to order, sign thank you cards and make regular trips to the post office to send them.
Enter stage left, Ollie from Friends On Every Street who designed Alastair a logo that we thought we’d use for a festival style fundraiser to raise money for a new all-terrain wheelchair. It was that spectacular we started making badges with the logo on to.
I’ve just had a look back and it was Cactus Cafe who first asked for the logo to be printed on a tee….and i suppose the rest is history as they say.

Alastair has had his merch in stores across the city, enjoyed a live steamed gig in his honour, had a Nando’s inspired meal made and sold for him and has even had his own donut! Needless to say Alastair is now not only the proud owner of a brand-new wheelchair but also made enough money to buy himself a new trike too!

Lock down was tough for Alastair, he thrives with routine, his routine went from being here, there and everywhere to pretty much doing nothing. Despite my best efforts I just wasn’t enough for him. The trike saved us.
Everyday we would take advantage of our one exercise a day and just trike, trike and trike and trike. By 30th May Alastair had ridden 100miles!!

May also saw our first trip to the coast as restrictions eased up slightly and this is where we spent most of our summer. However it was this point when Alastair developed severe travel anxiety. For an avid explorer this was heartbreaking to watch, his whole body would tense up and shake. While this is still present in Alastair it has started to ease slightly so we’re hoping this lockdown doesn’t reintroduce it.

Being 16 saw Alastair shave and bleach his hair, finish high school and meet his new baby cousin.His kayaking and sea fishing adventures landed him on TV and he even got to ride a stunt horse!
We’ve had a camper van holiday on the jurassic coastline, doorstep dances and helped to rescue toads.

September saw us having to say goodbye to PA superstar Betty but welcome Anna to our team with open arms. Alastair started a brand new college where he knew no-one and basically bossed fuck outta it.

Alastair has ended his year of being 16 by developing a love for skating, wether that be towing Jack or heading down the local skate park on his trike. I have a feeling we might see this skill develop this year.

If you’re reading this then can you please take a moment for Alastair’s friends he has lost this year. Close school friends Ollie & Mia, Angelman bud Brodie and IG chums Torben & Casey. Our hearts this year have been with their families.

Over and out, until next year….

Unless you want a green hoodie?

16 – The one I wasn’t mentally prepared for.

“The Mental Capacity Act (MCA) 2005 applies to everyone involved in the care, treatment and support of people aged 16 and over living in England and Wales who are unable to make all or some decisions for themselves.”

“When a young person over the age of 16 has been assessed as lacking mental capacity, there may be many different people and agencies involved in making decisions on their behalf, depending on the complexity of the situation.”

So yeah, decisions in Alastair’s health and welfare can now legally be made by professionals, in what they deem to be in Alastair’s ‘best interest’, after meeting him for how long?! While we have been reassured that a parents voice can go a long way this is still our reality. And I’m scared.

16 is also the same age that I met Adams Myth, Alastair’s Dad. Which I’m pretty sure was like yesterday? Alastair reminds me a lot of myself at the same age. Totally checked out of school and ready for a new challenge. He’s determined and completes anything he sets his mind to. Music mad and stylistic. It’s a shame the same can’t be said about Adam at 16 but the less said about that the better.

But anyway, as has become tradition, lets look back on this milestone day on what it was like for Alastair BEING 15!

Alastair started the year with 2 weeks without Mum!! The longest he has ever been without me. Was he bothered? NO! He lived life to the fullest with his Dad and two PA’s. I’m still jealous of the Bowie gig and Leeds trip!

Words can not describe how much our lives have changed since Betty and Josh stepped into our home just over a year ago. The support they have given us all has been outstanding. I just love watching Alastair go to the door as soon as he see’s you waiting for his next adventure. Oh and you both make mornings not only bearable, but fun!

We’ve dedicated every Thursday evening to Alastair this year. He gets full control of what we do. We listen to him, observe him, encourage his chosen activities to allow him to thrive as an individual. He ‘tells’ us so much during this focussed time. We’ve been bowling, to the arcade, the cinema and to pretty much every Trinity Live we could make. But despite better parental guidance Alastair has found a love of Nando’s, fucking Nando’s!

Our first city break of the year was to Liverpool where Alastair cemented his love for The Beatles and actually took time to admire art in Tate Liverpool!!

Sadly his epilepsy became uncontrollable over Easter resulting in ambulance attendance and a (thankfully short) hospital admission. Despite missing almost a month of school, Alastair bounced back after a few changes in medication and kept all of his skills which he has often lost in the past.

Our next break was Alastair’s first tip to Amsterdam! We love it here. We walked out to De Pijp where Alastair enjoyed fresh Stroopwafels and Bitter Ballen, oh and far too many milkshakes which made him super super happy, so much so he forgot to look around the Red Light District!
Alastair has also visited Hardraw Force, an OK Diner to relive his American road trip, Manchester to watch me graduate (poshskipMA) and York many times, mainly for Spark!

He’s stood on another picket line, tried his hand at roller skating and was even live on the radio. (although the wrong version of Man Who Sold the World was played and Alastair was mortified!)Oh and he had the entire crowd chanting his name during a Bunkerpop gig at Freedom Festival!

I have enjoyed watching Alastair mature this year. Last year I spoke of Alastair’s crippling anxiety, this has been minimised thanks to the consistent support of his PA’s. This in turn has allowed Alastair to be more present in different situations. This year he has learnt to be more patient, more aware and more empathetic.And the biggest thing?! Alastair has learnt to stand still this year. I don’t think we’ve ever given him the chance to do this before. Run before you can walk springs to mind. I’ll never tire of seeing him stand, on his own.

They say it takes a village to raise a special needs child. Well here’s our village and we love every single one of them!

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.

Last year I remember writing a surmise of Alastair’s first year as a teenager. This reflection massively helped in us moving forward, it facilitated a further drive for inclusion and advocacy.So today, on Alastair’s 15th Birthday I write

BEING 14

Anyone with an SN child will know how important being 14 is. In the eyes of the authorities this is the gateway and start of transitioning to adult services. So what does this mean to Alastair and ourselves? Firstly this means we have had to sit and think long and hard about what Alastair’s future will look like, where he will live and how we see life for him once he leaves the school he has been at for 12years already! Daunting as that is in itself we are also faced with issues in regards to the law when we are no longer Alastair’s legal guardian and how we can continue to look after Alastair’s financial and welfare matters as he lacks mental capacity.

We have been working with CAHMS (The Child and Adolescent Mental Health Services) this year looking at ways to manage Alastair’s anxiety and self harm and working out what are Alastair’s ‘triggers’. Unfortunately this has meant that some days I simply admit defeat and stay within the comfort of our own home, which can be isolating, especially as most of my freelance work is also done from home.

We’ve tried and failed with splints to improve Alastair’s mobility and movement and have recently completed our last course of botox treatment. Both because of and despite of this Alastair’s mobility has actually improved dramatically this year. We are back walking stronger than ever with more confidence!! And although this is incredible, Alastair is physically demanding and strong willed. Allowing him to walk places is becoming increasingly difficult but I manage, just.

This year Adam and I have had only 2 nights away from our caring responsibilities! While I understand many parents face similar struggles with childcare, a break, however tiny is crucial to parents of severely disabled children.

So lets now talk about the ‘next adventure’, a term I coined about raising a teenager.This year Alastair embarked on a massive Californian road trip. He visited San Fransisco where we met the wonderful Instagram friend Tia, Maria & Amanda, Monterey, The 17 Mile Drive, Santa Cruz, The Big Sur, Yosemite National Park, Nevada City, Lake Tahoe, Sebastopol and Sonoma.

We spent another perfect week in our second home, Bridport staying in our much loved camper van and kayaking the Jurassic Coastline.

Alastair had his first ‘cruise’ experience with a Dutch Dash to Rotterdam where we met more Instagram friends Barry, Boy & Bo who were the most perfect hosts. Alastair sampled Pepernoten, Stroopwafels, Kruidnoten and Oliebollen.

Alastair was chief coffee supplier on Mark and Adams 100 mile Cycle for Legs to help his little chum Tallulah (Jessica, Matthew) and cycled 75 miles tandem with Adam and East Coast Bicycles to Cleethorpes and back just for Fish & Chips!

Alastair’s communication is outstanding. I’ve already posted on here about the strides he has made with his AAC (Augmentative and Alternative Communication) and the efforts his school have now been putting in too. He now understands over 30 words and will eagerly explore core language in an effort to find what he wants to say. Alastair has started to guide my hand to his AAC or to help him do things like open doors. And, this may not sound huge but Alastair now understands pointing! Before, if I would point at something he would stare at the end of my finger, he is now able to follow the direction beyond my finger and locate what I was attempting to show him.

This year we have been granted a Personal Budget allowing us to employ 3 awesome PA’s that will be able to assist me within the home, but more importantly assist Alastair in brand new adventures WITHOUT Mum and Dad!!

So yes, being 14 has been pretty damn awesome, challenging but awesome. Here’s to being 15 and another year of raising the most courageous, charismatic and adventurous teenager there is.

….Someone pass me the champagne!

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!