I don’t think there is a worse feeling than helplessness. Franklin has started year 1 and that initial settling-in struggle is a constant worry. Him rocking on the floor was the last thing I saw at drop off in the morning. The tears in his eyes are the first thing I see when I collect him each afternoon.
The worry races through my mind constantly, during the day and the night. Especially the night when I lie awake with only my thoughts and my fears I can’t hide from any more. I don’t tap into my feelings as much during the day, when I’m on the go, trying to get on with life, but in the middle of the night with no distractions and nowhere to hide, everything is exposed.
Should I have started him back doing less hours? Is he going to settle? Is he going to cope? Will he progress? Will he integrate? Will he eventually speak? (please god). The truth is I don’t know the answer to any of these questions, I’m helpless. Will, in time, he need to get off the mainstream path and follow a new path? In a school where they’d teach him the most basic life skills, like going into a shop to buy a loaf of bread. The simplest of tasks to most people.
It’s in those darker moments when I wish I could take it away. Maybe that’s me being selfish, wanting to make life easier for myself and my family. It’s admitting that autism is a burden and that’s something I never do because I feel guilty saying it, even thinking it. As though by saying it I’m somehow saying Franklin is a burden, which he categorically is not and he never will be, end of story…. but sometimes yes, I admit it, I wish I could take autism away from him. I will always want to protect my children and take any difficulties away from them. I have to witness, helplessly, how challenging situations can be for him, how much of a struggle he has every day… and it hurts like hell. When I held my beautiful baby boy in my arms, I never thought in a million years that he might one day need to be taught how to buy a loaf of bread.
I’m scared. I don’t want to be but I don’t know how not to be. He is absolutely incredible and he amazes me every single day but I’m still scared of what the future will look like for him. How could I not be?