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.
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 pediatrician’s 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.
Part of this utter fear I think is fuelled by self doubt. Are we good enough to be the parents he needs, are we capable enough? We love him tons is that enough. This is a whole different parenting ball game. 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.
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 and jump the school bus with their pals while Mam and Dad can just crack on and go to work, easy life.
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 very roughly sketch plans for Reilly’s education (little did we know that came with a fight too).
We absolutely love the bones of him. He is funny. He is super bright and he is autistic.
He is Reilly.
Brilliant Christine I sometimes wonder if things were known about this about 30 years ago I might have realised we had a problem with my daughter ( who I don’t see)breaks my heart to think I could have done something instead of being told she was just seeking attention still blame myself she has two children who she does not see or us it is as if she has no feelings you are doing a wonderful job xxx
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great BLOG Christine. what IS TUBOUUE SCLEROSIS ?
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Wow Christine that was powerful piece and took me back to the many times I had visited with various Dr’s and Specialists. Reilly is lucky to have you Shane and his loving family and you are blessed to have him. Your writing is straight from the heart no nonsense with a brilliant sense of humour and stark honesty. You will help so many people through writing this blog and change so many lives for the better. Wish I’d had a Christine going through all the angst worry guilt all the ups and downs and feeling like you’re the only one ………Thanks Christine for writing this blog.
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What a lovely thing to say! Thankyou so much it makes me feel so much better writing everything down. Worst thing is feeling like you are the only one and thinking you are the only one doing everything wrong.
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