I am the mother to a teenage boy who has severe autism. What does that mean severe autism? It means that my son is non-verbal, needs support in his daily activities, cannot read or write and depends on those around him to take care of him.
My son who is now 15 years old cannot write his name. But he does recognize it when I call him. He cannot get himself a snack, make his own lunch or cut up his favorite cucumbers. He enjoys sitting in the kitchen while I prepare his food. He cannot wash his hair, brush his teeth or shave himself. I am fortunate when he cooperates for me to do it.
His new obsession is putting things away. In the closest closed door situation. So anything left on the kitchen counter ends up in the cutlery drawer. Think watch found beside butter knives. Think iPAD in washing machine and the door closed because he is getting ready to go into the spa. Think ice-cream container shoved in the Tupperware drawer left to melt.
Severely autistic means he will never be autonomous. He will never drive a car, live alone or marry. Severely autistic means that Keyan is all mine. I will never be jealous because some girl has stolen his heart. He will only have eyes for his mama bear. His eyes that sometimes pierce my soul with either profound love or hate (depending on how he is feeling).
All the natural steps our children are meant to take he won’t. Soon his sister will be off to Cegep/College, getting a job for pocket money and staying out way too late for mama bear’s liking. She will be living life and testing boundaries. On the other hand Keyan will be home bouncing around from room to room executing mischeveous acts that are meant to get on my last nerve. His new thing lately is going into the bedrooms and stripping the beds down to the mattress – guess who never remakes the bed? Yup – that’s right Keyan doesn’t because he doesn’t know how. Last night I had to place my hands over his hands to get him to go through the motions. At least if I can teach him this hand on hand thing really sucks then he might stop striping the beds.
Severely autistic means for parent’s always have another dependant and not simply in a financial sense but that every waking moment is reserved to care for someone else. We who have children with special needs who need to be tended to around the clock will always and forever be caregivers…not simply parents (guiding and raising our children through life) but caregivers (physical, financial and emotional). The act of always doing something else for somebody else is in itself exhausting. There are days when I want to curl up in a ball and cry. I know that there are no benefits to said action so I don’t do it. Instead I find ways to keep sane: run, call a friend, have a glass of wine, take a long bath, sit with my husband… I have to convince myself that every little action I take will give me the required energy to keep it all going.
The job of taking care of Keyan on the daily is a huge responsibility. There are days I wonder if he is happy. When I think for one minute that my sons might not be happy I become extremely sad. I have to chase those thoughts away or I risk falling into an abyss of self pity. I am his mother – I should know, live and strive to make him happy. Although you might be thinking otherwise this is my reality – it is how I live and feel as Keyan’s mother – a boy with severe autism. I know that this entry is not story like – a beginning, middle and end. Instead it is me sharing what I am feeling. My thoughts are hazy and my head is swirling in a vortex of thoughts, emotions, responsibilities, fears, anger and self-doubt.
I am the mother to a boy with severe autism and that fact makes it so that some days are much harder then others. Today is a tough day. So let me sign off in hopes I can go for a run, get myself a coffee or take a long bath to find myself back to strong.