It’s been a very intense few days. I’m trying to work out the best way to give you a window into my experience, to explain why we have done what we did and what motivated us. And I think the only way to do that is to write a narrative and tell you the story. So here it is.
The story of Great Ormond Street. Part one.
After making the decision as a family that we could no longer fight the endless infuriating web of paperwork and unanswered calls and that is the NHS, we decided to pursue a different road. A road we are very privileged to walk down. A private road where it would seem that money buys you answers. Now I could spend the next hour explaining why this set up is so morally wrong and how money should not make you more socially exquisite. But that’s a rant for another time. For now, we will just have to accept that this is life. A bitterly unfair life. Anyway… With the generous help of our family we were given the chance to walk (well, run) down this unknown trail. And this week we took our first steps. It was our first appointment at Great Ormond Street.
In the car on the way there I stared out of the window. Nerves were swelling in the pit of my stomach. I was rehearsing questions and practicing comebacks for when the Professor didn’t agree with my descriptions of everyday life. For of course he would challenge me right? Almost every other professional has seen fit to invade my thoughts, feelings and parenting practices. I didn’t see why this should be any different. I often think that heading to a significant assessment or consultation appointment is like heading to a job interview. You’ve got the skills, examples and experience, but unless you get that across verbally in the one hour slot you are given you’ve blown it. You are swiped from the pile.
I felt tears start to climb towards my eyes. So much was resting on this appointment, in fact, everything was resting on this appointment. It was our last chance to find help, to learn about our boy, to understand what he needed from us. So, no pressure.
As we pulled up I gave myself a proper pep talk. It was time for my game face. So I sucked what emotion was swirling through my veins away and locked them right in my imaginary vault in my brain. There would be time for them later.
Walking through the corridors I could see kiddo becoming agitated. There was no fooling him. He knew where he was. The crying began. Upon arrival kiddo went to the playroom with his grandparents while I dutifully filled out paperwork. I asked the receptionist if I had come to the right place. He didn’t answer. He didn’t need to. He looked me in the eye with the smallest yet most knowing smile I had ever seen, and he nodded. I was quietly taken aback with his confidence. As I finished signing off various papers a small and gentle figure approached me. I knew who it was. Who am I kidding, of course you knew I had googled and watched various videos of the Professor on YouTube before we came. No surprises for me today thank you. He came over and softly introduced himself with an air of confidence that swallowed me whole within seconds. I was completely in awe and completely calm all at once. He seemed surprised that we had brought three adults with us. “We need them” I explained, thinking here we go, let the judging commence. But no. Just a simple nod of the head and he asked me to follow him into his office for a chat without the child in tow.
Of course no sooner had we closed the office door than the screaming commenced outside. It went right through me like a lightening bolt. Yep, it was kiddo. The Professor asked if I would like to bring him in. “Not just yet” I replied. Another nod of the head.
By this point I was at a bit of a loss. All these responses to the questions I was used to being fired at me. They weren’t needed. No justification was needed. And then I realised. I was being trusted as a parent. Trusted to know my child better than anyone. For the first time ever on the medical side of our autism journey I felt a brand new sparkly feeling. Empowerment.
We continued to talk but it soon became apparent that the Professor needed to see kiddo in action. So we brought him into the office.
The next half an hour is a blur to me. My ears were filled with screaming, my arms bruised emotionally from the restraint needed during examinations. My heart heavy with the injustice that my child should need to experience this level of distress. Following the examinations the Professor took me to one side and calmly talked through the referrals he was going to make. It was a surreal moment. All I could see was the Professor sat talking to me, the rest of the room was on fast forward. Figures moving at speed as the kiddo tried to escape, a blurred chaotic noise trying to break my concentration. It failed. I was engrossed. He had observed and he had heard. Not only had the Professor believed me, he had confirmed that all my suspicions were true.
All of a sudden that vault in my brain where my emotions were temporarily stored burst open. Tears began to swell. The surge of relief running through my veins was like nothing I had ever felt before. My shoulders rose as the weight was lifted.
As we made our way out the Professor popped a gentle hand on my shoulder. “It’ll be ok” he said.
Those words are still bouncing around my body. I left a truly horrendous experience with kiddos violent behaviour, feeling completely uplifted and calm. But overall I felt relief. There was (and still is) a little anger in there too. For the times I wasn’t believed. For the times I wasn’t listened too. But for now, I hold a new flame in my sights. One of hope. One of explanation. I daren’t let it burn too bright, we have been burnt before. But until part two of this tail raises its head, I’m keeping that flame firmly in my sights.
Thanks for reading,