World Autism Awareness Week begins tomorrow Monday 26th March and concludes Monday 2nd April with World Autism Awareness Day. A matter very dear and very close to my heart. For WAAW last year I decided to host a bake sale at my place of work fundraising for The National Autistic Society. This was my first port of call for research during those early days where we were trying so desperately to find the answers to our questions. This year I have decided to support a worthy SEN charity who I deem to be an important pillar in my local community, SPACE.
When one door closes, another opens and it’s often hazy remembering what was once behind that door. Living every day moments is like being in the room, once the door is closed, you have only your memory to serve you. Everything prior to Sonny’s formal diagnosis is a little hazy now, as often stressful periods are when you look back on them. It’s only been three months, but after sitting pretty on a two year waiting list, I was eager to put that whole experience in a little box and tuck it safely away.
From the age of 3, we have fought tirelessly to understand how and why Sonny struggled the way he did. I researched and read whenever I could and although it helped me come to terms with what Autism was and the surrounding facts, it wasn’t the same as speaking to fellow parents who live and breath Autism parenting every single day. Gaining their first hand experiences was what I needed.
I met up a fellow SEN mum one afternoon and we sat down together with a coffee at a soft play centre whilst Zachary, my youngest, ran off steam. I was exhausted both physically and mentally at this point and I needed advice. She briefed me on her experiences with her son and we looked through his EHCP so I could gain a better understanding of what that meant and what it entailed. She pointed me in the direction of organisations who can support us with schooling, parenting and applying for Sonny’s relevant financial entitlements. The most valuable of all of those was her recommendation to join a Facebook Page called SPACE. I am so thankful I did.
Space is a charity supporting and relieving the needs of families and carers of children and young people diagnosed or under assessment for ASD, ADHD and related conditions but not exclusively. (I will post another blog next week detailing more of the wonderful work they do, so stay tuned during WAAW!)
You don’t need a diagnosis to be welcomed with open arms.
In a world where our family struggles to fit into the social norms, none of that matters in the lovely little SPACE family. Many of those early days were filled with hopelessness and uncertainty, SPACE was there to guide me in the right direction. I was pointed to all the right people, given all the best contacts and with the community’s help I knew what to expect every step of diagnosis way.
What I love the most and what has made the biggest difference is being able to post questions whatever time of the day. I love that I can share my thoughts and feelings with such honesty and often vulnerability. I ask questions and discuss the challenges we face in more detail than I would feel comfortably able to here, in this little space of mine. I can browse through my news feed and read other members posts, often on subjects that may not be relevant to me right now, but I know that if the time comes, I’ll be at least one step ahead. They are there in the background whenever I need guidance.
Thank you SPACE for climbing into the hole I was in and providing me with all I needed to dust myself down and get back to the top.
So with that in mind, I’m not just celebrating my very own wonderful, amazing, handsome and autistic Sonny this WAAW, but every other individual with Autism Spectrum Disorder, their amazing families and the incredible support networks we all rely on.