Being 14

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!