“We are now going to talk about our feellngs Johnny. Remember last week we talked about how our engine can run fast, or slow or be just right?”
Johnny is in his third session of a 8 week block of a combined OT / SLP therapy at the hospital’s child development centre. They are going to be working on increasing his speech production, help him begin to comment more in a descriptive way, and begin to relate how he is feeling so that he can be in control of his self-regulation.
I find it very surreal that here we are sitting in the very same hospital that my Dad spent a week in over a year ago after being diagnosed with terminal lung cancer but in a different wing talking about “feelings.” I am watching Johnny’s face and the minute the OT says the word “feelings” he immediately locks eyes with me and then quickly swipes his hands over his eyes trying to avoid tears. The OT surmises this is a touchy subject so she begins to tread softly and use happy faces and mad faces to talk about identifying feelings.
If it was another day, in a different week I would have quickly tried to explain why Johnny is trying to hide his emotions today but this afternoon I did not dare open my mouth. When Johnny looked at me I knew he was checking my face and especially my eyes to make sure I was okay. I know he has heard me talking about “Grandpa in Heaven” and that he watches me closely to make sure “Mommy is okay.”
Johnny has always been the kind of child that gets his own feelings hurt easily and when he realizes he has hurt someone else in some way he gets very upset. So many times I have read stereotypes that having Autism can lead to not “feeling” things deeply and not having empathy but I find that to not be true at all. For Johnny, where the Autism clouds the issue is when he doesn’t realize that something is wrong and he just keeps doing his own thing and that is because he has mis-read a social cue.
Last year when my Dad passed away so many well meaning friends and loved ones wondered what he truly understood about my Dad dying and how his mother was feeling. There was an assumption that because Johnny was essentially non-verbal that he could not understand what had happened and that the Autism would make it even more challenging.
What a lot of folks didn’t understand was Autism for Johnny is finding a sense of security and stability in routines and repetition. Having his Grandpa suddenly be in the hospital for one week and never ever seeing him not be at home ever was very upsetting to Johnny. Seeing his Grandpa come home and not be the strong resilient safe harbour that we depended on and instead be weak, worried and unsure unraveled his confidence. Not being able to go to Grandpa anymore for assistance anymore and instead be the one assisting Grandpa with little tasks was unsettling for him. Having to see new faces in our house all the time helping his Grandpa and be part of our home routine was challenging for Johnny.
The one thing we trusted in was that having these changes occur a little by little over time would be ultimately easier then suddenly having Grandpa move out and never come back home again with us visiting him somewhere. I saw how hard it was for Johnny to endure a week of watching me go to the hospital to see his Grandpa and it broke my Dad’s heart to see Johnny literally wrap himself around him when he finally came home from the hospital on the 7th night.
I know it gave my Dad comfort to spend his last days in our home but I know it gave Johnny comfort that every single day he got to see his Grandpa when he went upstairs and for little while Grandpa could still cling to Johnny’s routine. The Palliative Care doctor assured me that seeing my Dad slowly diminish in front of his eyes was the better choice but not necessarily the easier choice for us.
Just like any story, the Autism would lead Johnny to require a beginning, a middle, and an end and I think we did our best to give that to him.
“So let’s talk about feelings….”
I asked Johnny if he was okay and he said “yes”. He came over and sat on my lap and grabbed my face gently with his hands and looked deep into my eyes. He kissed my cheeks one by one and then each of my eyes and said “Mommy.”
Then he went and sat back down and looked at the happy and mad faces and proceeded to match up the person in the picture doing an activity with the happy or made faces. The OT and SLP were surprised at how quickly he deduced and matched everything up.
I am not.