“Rhys, all finished?” I ask as he stands up in the bath. I lift him out and wrap him in a grey cocoon, rubbing him up and down to dry him off. He is totally consumed in the towel, with the only visible body part being his big blue eyes poking out from the folds.
“Rhys pyjamas” I say, pointing to the clothes I have laid out on the landing. Each piece in the same sequence I always lay out for his clothes. A known routine he can independently follow. He smiles at me and ditching the towel he streaks across the landing and begins his ‘getting dressed’ sequence. As he finishes dressing himself, I re-adjust his trousers and we continue his bedtime routine.
“Rhys, Monkey Puzzle or Room on a Broom” I ask, holding up each book for choosing. “Room on a broom” chooses Rhys, and I start to read. As I tell the tale of the clumsy ginger haired witch, I pause at set intervals to see if Rhys will fill in any words.
“The witch had a cat and a very tall…” I look towards Rhys and let the silence consume the room. It takes a few seconds, but he responds in the desperation to fill the silence and continue the story by saying, “hat”. I smile and immediately continue with the next sentence.
Everything I have done this evening is a set routine. The words I have used, the sequences I have put in place, the strategies around choices and ending of activities, have all been done through months and years of hard work.
Four years ago, I was thrown into this unknown world. A world I did not understand, sitting alone with no support or direction, I struggled. I cried and fell into a sense of depression because I was lost and sent down a path I did not know how to live.
I talk about how I struggled because my son, Rhys, was happy. Although he didn’t engage, he was happy and content, locked in his world of excitement and fun. It was only when I tried to pull him out of his comfort zone and push and challenge him, that he met me with meltdowns.
But tonight I thought how my life has become normal. It is integrated with new ways of living and working together. Tonight I took a double take and thought about how my son is still not fully verbal and struggles with social norms and engagement. But I only thought about those things when I deviated from the norm. We have put in such hard work over a number of years, changing how we live and forming a new normal.
Don’t get me wrong, we have tough times and hard days, but so does every other family, whether they have autism in their lives or not.
Things take time. Changes take years. But every little change, every baby step towards a massive goal, means achievement and new successful ways of living
Set those goals. Find new ways of doing things. Ask for advice. Be creative. Every big achievement comes from those little wins.
You can do it.
Just take one day at a time. And before you know it, that big scary change in your life will become your new normal!
