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Autism Awareness Week – an article by Michelle Cox

Bobby was born on 26th January 2017. An IVF baby, his arrival was much anticipated by our whole family. I was so excited to meet this little boy who I had dreamed about for so long. I had imagined his childhood and was so excited to see who he would become. Maybe he’d like football and sports like his Dad, or maybe he’d be more creative like me.

I first raised my concerns over Bobby’s development when he was 18 months old. Physically he was meeting his milestones, even excelling, walking at 10 months old and so confident in climbing and balancing. He had no fear at all. But he wouldn’t respond to his name and at first I contributed this to a hearing problem as he suffered from regular ear infections. I also noticed he stopped clapping and didn’t point or wave like other children his age.

The first time the words “Bobby” and “Autism” were used in the same sentence by a teacher at his pre-school, I dismissed it immediately. It wasn’t denial, I knew there was something that was delaying his development, but Autism? No. Autism was lining up toys by size and colour.

It was no eye contact and lack of interaction with others. It was playing alone and not wanting hugs. It was a maths genius, or someone who could count 246 toothpicks on the floor in just a few seconds. And that was so far away from the little boy I saw in front of me. No, it definitely wasn’t Autism.

At 2 years, 9 months old, Bobby finally had an appointment with a paediatrician. After an hour consultation where Bobby was utterly charming, beautifully affectionate and wonderfully playful, the doctor asked if we wanted the diagnosis now or would rather wait for the letter to be sent (silly question). “Your son is Autistic” she said. And with those four words, my whole world was turned upside down. I felt my breathing shallow as I tried to push down the lump in my throat.

Despite my best efforts, tears started to fill my eyes. The doctor reached out, put her hand over mine and said “I’m so, so sorry”. Then I was sobbing, completely unable to compose myself. I was 6 months pregnant at the time and my emotions were all over the place. Then I just ran, leaving my poor husband with Bobby in the doctors office. I just had to get out of there. I found a toilet, locked myself in, sat down and just cried.

Back in the car, my husband and I sat in silence, both trying to digest what we’d been told. After about 10 minutes, I looked back at Bobby in his car seat. He stopped flicking his toy, looked directly at me and gave me the biggest smile ever. It was a lightbulb moment. Nothing had changed. Bobby was still Bobby, my wonderful, cheeky, gorgeous boy. I’m not going to say that was beginning and end of my own emotional journey in acceptance of his diagnosis, but I just knew that it was going to be ok. I knew that we’d do everything possible to get him the best help out there and give him the best life we possibly could.

That was 18 months ago and I’m still amazed at how little I understood back then about Autism. What seemed like a tragedy at the time, has actually changed me, our lives and my connection with Bobby for the better. Now I understand his challenges and needs better, I am blown away daily at his strength, determination and bravery. I am in awe of his tenacity and every single milestone, however small is celebrated. There are thousands of photos and videos, and regular FaceTime calls to Nanny to show her how he can now drink from a cup or how he has learnt to offer kisses.

Bobby is 4 now and we are waiting for him to start a specialist school in September. He is pre-verbal, but he’s becoming increasingly skilled at communicating his wants and needs to us in his own “Bobby-esque” way,  or maybe it’s us who are just better at hearing him. He now has a little brother who he adores and the bond between them is beautiful to watch.

It’s not always easy. There are difficult days when Bobby is struggles with his communication or sensory processing. But these days just drive me on. I want everything for my son, but most of all I want him to be happy. I want him to live in a world that not only accepts neuro-diversity, but celebrates it in all its glory. That is why Autism Awareness Week is so important, because our children have so much to offer the world if only the world could open their hearts and minds and look beyond the label.

I wish I could go back to that paediatrician appointment knowing what I know now. I’d ask her why she was “sorry”. My boy is amazing, every single part of him. There’s absolutely nothing to be sorry about.

The Willow Tree Club
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NewsAutism Awareness Week – an article by Michelle Cox