Diagnosis day

Even though I knew Reilly had autism I always held onto a tiny thread of hope that he didn’t.   I didn’t want my boy to struggle, 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 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 were in shock.  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, nobody wants their child to struggle, you want them to go to the local school, to make friends; to just be the same.   Why us? why Reilly?  Have we not had a tough enough ride in life so far?

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.  We are lucky, some families are fighting to get a diagnosis years down the line.   It is hard and in most cases you must fight for help every step of the way, be vocal and keep at them.

So that’s it. That was diagnosis day.  It was heartbreaking but it has opened new doors for us and enabled us to plan for Reilly’s education and future.

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 other in worse positions” and she was right.

Special Needs and Legal Entitlement Book also enabled us to become more educated on what should be available to us in the special needs minefield.

A year on from diagnosis and it doesn’t bother us one bit that Reilly has an autism diagnosis.  He is our boy, yes he is challenging sometimes but he is loving (with us anyway). He is funny. He is super bright and he is autistic.  He is Reilly and we love him.IMG_6335

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Christine Stephenson

Really busy mam who runs her own charity, has 3 sons and learning about autism every day. Contact me at alphaautistic@gmail.com

4 thoughts on “Diagnosis day

  1. 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

    Liked by 1 person

  2. 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.

    Liked by 1 person

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