What’s the nicest thing you can say to an Autism parent? A caregiver?
In a time when I felt like I was wading through a dark cloud, these words brought light.
But I have to take you back a bit first.
There was a time Declan did not like people approaching him. Social interactions were beyond difficult for him. He only allowed a few people in his inner circle. In regards to touch, if someone gently placed their hand on his back, Declan reacted as if he was touched by fire. He would lurch forward and scream, then cry. Add on all the other factors from the environment that were affecting him – sights, sounds, smells – and something like haircuts or dental visits became mountains.
To get up the mountain let’s try to get up portions of it at home, first. Let’s do a social story. Let’s listen to hair clippers. Let’s role play – I am the hairdresser and pretend to cut your hair, then you pretend you are the hairdresser and pretend to cut my hair. My older son, Bobby had a lot of anxieties and fears when it came to getting his hair cut and going to the dentist, and these activities were extremely helpful in allowing him to have successful respective visits. And as much as I tried to use these activities with Declan, they required his attention, his ability to know what “going to get your hair cut” meant – things he just wasn’t able to focus on.
Most haircuts for Declan required my husband and I holding him. I would sing to him and hug him tight. My husband would bring reassuring words. Declan’s siblings would offer their kind words. But the storm in Declan was ever-present. Declan haircuts were dreaded. By the entire family.
So, one day, we had to go for a Declan haircut. I was exceptionally low. I was dreading the haircut, I was dreading the screaming, I was dreading the distress Declan was going to experience, I was dreading the stares. We go inside and thankfully, are called pretty quickly to our haircut chair, and we get in place. Declan and I are cocooned in our haircut cape. The hairdresser soothingly tells Declan what she going to do. The clippers go on. I start to sing, he starts to scream and wrestle, my husband is holding Declan’s head against mine trying to say reassuring words. The room is full, so there are lots of sounds. It felt like I was sitting in the middle of a hurricane, trying to squeeze the sound and chaos out by squeezing my eyes closed. And in the midst of thunder crashing, I hear the hairdresser gently place in my ear,
“You are doing great – in all that you do for him.”
It was the nicest thing I had ever heard since becoming an Autism mother.
I looked at the hairdresser and mentally travelled through a new storm of thoughts. Of different meltdowns, of different crises, of different therapy appointments, of different stares. Different times I tried to explain my son. So many times I didn’t know what was happening. So many times I didn’t feel like I knew what I was doing. So many times I was trying to help my son through a hard time, to help us through a situation. So many times I felt like a complete and utter failure. These words…. I was doing great, in all those hard moments. I inhaled deeply, swallowed my tears and said, “thank you.”
So, when I think about the nicest thing you could say to an Autism parent, caregiver, teacher – to the person living those hard moments, I always come back to this moment with the hairdresser. To those words. To the impact they had on me.
Declan’s hairdresser’s name is Jackie. Jackie has been Declan’s hairdresser for 3 years now. She talks him through each step. He knows what to expect. They move at each other’s pace. He has a routine. He knows he gets a lollipop at the end. And I know Jackie is there for me, too. She saw the caregiver in me and provided me support. And when the situation presents itself I will tell another caregiver:
“You are doing great – in all that you do for him/her.”
The best thing I have ever heard as an Autism mother. As a caregiver.