Even though I knew Reilly was autistic I always held onto a tiny thread of hope that he wasn’t I didn’t want my boy to struggle you see, I wanted him to be accepted; I wanted his biggest worry to be what was in his packed lunch box.
The day of his diagnosis came in March 2015. Myself, Shane and Reilly had to attend a meeting with our speech & language therapist and a pediatrician who had never met Reilly before. This made me a bit nervous how could she diagnose my child in a 2 hour meeting?.
The drive to the centre was awkward. Reilly kicking off because we were driving down a road that he hadn’t been down before and Shane & I mostly in silence, broken every now and again with a heavy tension filled sigh.
We arrived to cheery faces and a room full of toys, so far so good. The first part was mostly play based, they played and interacted with Reilly best they could. We were then questioned about Reilly’s behaviour. Every answer we gave terrified we’d given the wrong one. Had we downplayed some of it? probably. It’s really easy to talk in detail about how great your children are at different tasks. It is not so easy to talk about things they struggle with and that’s what we had to do. I felt disloyal to Reilly, I felt like I had failed him.
Next we were taken to a small room where Reilly was stripped down to his nappy and a UV light was used to scan him for marks on his skin, they were looking for Tuberous Sclerosis, 50% of children with Tuberous Sclerosis go on to develop ASD. I had no idea it even existed. It sounded terrifying, life threatening and all I needed to know was that he didn’t have any marks. He didn’t.
Off we went to wait for them to deliberate and deliver their verdict. 20 minutes felt like 3 hours with constant anxiety and on the edge of a full-blown panic attack.
As we took our seats back in the pediatricians office where there was no beating around the bush, she was direct and she was honest. Reilly was autistic. No more might be, maybe, could be – he was. Even though I was expecting this it felt like someone was standing on my heart. I could barely breathe and I wanted to run. I wanted out of the office and back home to this morning with the maybe’s and could be’s.
We talked for a bit about how we felt but to be honest I cannot remember what was said. We left with a pile of literature on help groups and activity sessions. Buckled Reilly into his car seat as we always did and sat in silence for a bit. I wanted to throw up, I had the shakes and I know Shane felt exactly the same. The fear was real, I cannot stress that enough because it is genuine fear of the unknown. NOBODY wants their child to struggle, they want the norm because its easier; they go to the local school around the corner for nursery and leave to go to high school at the end of year 6, they make lifelong friends; the same.
We came home and told his brothers of his diagnosis. It made no difference to them whatsoever. They already knew. Everybody knew.
I should mention prior to this meeting reports were submitted to help with his diagnosis by his nursery, health visitor, speech & language, education psychologists, health visitors and portage. All unanimous in their verdict. It took approximately 2 years to get it and the equivalent of the encyclopedia britannica in paperwork. We are lucky, some families are fighting to get a diagnosis years down the line, it can feel like looking for the holy grail at times. It is hard and in most cases you must fight for help every step of the way, be vocal and keep at them. If you don’t shout you won’t be heard.
So that’s it. That was diagnosis day. It threw a major curve ball but it has opened a few doors for us and enabled us to sketch plans for Reilly’s education.
The best piece of advice we had was from my sister in law Kelly who I quote “Is he going to die from it? No crack on then there are others in worse positions” and she was right. He’s incredible.
He is funny. He is super bright and he is autistic. He is Reilly and we love him.