My daughter has been attending school since the age of three and full day school since the age of four – she started ABA preschool on her third birthday. Actually, technically, Mia has been attending “classes” since the age of sixteen months when she started a whole series of different therapies; sometimes working up to five hours a day. She also hasn’t had more than three weeks off at a time since the day these therapies commenced – she attends supplemental schooling in the summer, four hours a day, five days a week.
The constant work she did for long hours before the age of three was intense. And it was hard. It was started at such a young age and that is something that has always pained me. Even today, thinking back on those days, I get a strange feeling of emptiness in the pit of my stomach. I know she had to have these therapies. I know they were (and still are) imperative but it does nothing to lessen the pain I feel when I think of her sitting locked-in for hours during chair therapy crying because she just wanted to get out. She just wanted to play. She just wanted to act like every other two year old. It still makes me feel bad that when other children are playing Mia is being forced to work – either at school or at the kitchen table. I sometimes try to tell myself that because she has never lived a life without hard work she doesn’t know anything different, and therefore she could not possibly miss it; but it doesn’t work, I still feel dreadful. Nothing can ease the pain. I know, only too well, what the life of a “typical” child is like and I can see how shockingly contrasted that is to Mia’s.
Knowing that, I’ve always tried my best to draw a line in the sand when it becomes too much and allow time for a break. And although I’ve continuously tried my hardest to enable Mia some sort of normalcy outside of her concentrated therapy sessions – in the past and present – I am just finally achieving a sort of balance between the two that any Buddhist would be proud of. I’ve realized over the years that she needs a break. Sometimes she deserves a day off for no other reason than the fact that she rarely ever has one. Sometimes she just needs a bit of time to decompress. Sometimes she just needs to be a kid. And, sometimes I let her. I have even cancelled therapy sessions before to allow her to have a moment’s reprieve from the vigor of her schedule, a break from the intensity of her life.
Because of this, I know some parents of children on the spectrum will think me reckless. They will think I have gambled away Mia’s time, gambled away her one chance at learning something valuable. They are afraid they only have a few years to “make a difference” with early intervention therapies. They are afraid if they stop for one day their child will lose something fundamental they have learned. They are in a race against time, a race against an imaginary clock, a race they will inevitably lose because time always, always wins. So afraid are they of missing out on that window of opportunity, so afraid are they of autism, that they are willing to sacrifice something so important, something that I as an adult hold so dear, a childhood.
Although I understand their desperation and although I understand their fears I just can’t live my life that way. Or, rather, allow Mia to live her life that way. She is, first and foremost, a child. She deserves a childhood. She deserves a fulfilling childhood. She deserves happiness, something so central to her all over well-being. She deserves more than that. And, so, I give it to her.