Our Boy – Rhys!

He came into our lives with jet black hair receiving the name of Jacob Miles … but that only lasted for about five minutes because the second I looked from Rhys to my husband, without a word we knew that was not who he was.

The name however did not go to waste, as we christened a second arrival to our home with that name a month later, and he is quite happy about it. Well at least I think so, he continues to show his gratitude by leaving presents on our front door mat – they are normally decapitated! 🐾

Rhys was a chilled baby. He would sleep soundly and when hungry would feed within five minutes, giving a good four hours to myself before the cycle started again.

He took his time to walk, and it was only at nineteen months that his wobbly legs allowed him the freedom to run around the playground. He never engaged with any other children but would spin continuously while others his age fought over toys or coloured and painted. I put his differences down to a delay in his developmental milestones. The fact that he was not speaking, was pushed to the side, because I saw his strengths in physical development and assured myself that he would catch up.

Rhys

But at twenty months, I started to question his engagement and lack of talking. I started to notice things, like how he wouldn’t answer to his name or respond to any request or call to action. While other children were engaging with their parents for requests for food, drink and the latest toy, Rhys sat looking at the little illuminated numbers on an alarm system or digital clock, everything else around him was non existent.

I would look in the rear view mirror as I drove him home from nursery. He would face directly forward looking at the seat in front of him in a haze. The amazing trees and cars that fascinated other two year olds would flash past with no acknowledgment from the passenger.

I put it down to glue ear and we went through ENT specialists, with hearing tests and wax extraction. But there was no progress. I wanted a solution, a quick fix, but none of the professionals had the answer. It was only after multiple assessments and paediatrician appointments we received a diagnosis of autism. Rhys was three and a half.

That diagnosis broke me. It cemented the fact that life was going to be different. It confirmed that there were challenges, and this was not a developmental delay where he was going to catch-up.

I went through a stage of denial. “Once he starts talking, it will all be fine” I would say to myself. I continued to “treat” him like my eldest son, expecting him to follow instructions and do activities expected of a child his age. However my actions were met with meltdowns, tantrums, confusion and frustration.

I became a prisoner my own home. I didn’t know how to communicate with my own son. Leaving the house meant confusion and sensory overload and Rhys could not cope with the anxiety, uncertainty, strange smells and sounds. His body and mind would shutdown, the only solution it had to coping with a world so scary and strange.

It broke me. It tore me up inside to a point where I wanted to punch a wall with my fist just to feel something, because inside I was empty, drained and without an ounce of energy to continue. It was the lowest point I have ever been in my life. It was not a situation where I just needed to go for a walk to clear my head, it was a time where I couldn’t cope. After hiding behind a fake smile and put-together persona, I did the hardest thing I have ever done. I asked for help. With help I became a different person. A person who learnt to adapt and help my son through his challenges and this scary world he lives in.

I accepted Rhys’ autism and together me and my husband worked with professionals to learn strategies, techniques and what autism meant for Rhys and our family.

Rhys said his first word at four. The word was “Apple” his favourite food. Shortly afterwards he said ten other words. They were “one, two, three, four, five, six, seven, eight, nine, ten”. Numbers are Rhys’ world, and we used this to engage and develop him. Everything we saw and pointed to got linked to a number and counting. “Look Rhys. Three ducks. One duck, two ducks ,three ducks”.

That was only two years ago!

Rhys can now talk and follow basic instruction. He can request different foods, a tv programme or toy with his learnt phases of “I want please Mummy”. He says “Thank you” when I fulfil his request and he takes himself to the toilet when he needs to go. Rhys is not able to hold a conversation with me about his day or ask me about mine. Everything is functional and is there to meet his daily needs. But Rhys is only five, we have a lifetime ahead of us. Knowing where we have all come from, the places we can go are now limitless.

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