In case you don’t know, my son is on the Autism Spectrum. The part of the vast, expansive spectrum that includes significant language delays, executive function challenges that manifest in a lack of impulse control, extreme bouts of anxiety, sensory processing difficulties, and global developmental delays. Please don’t feel sorry for him or for us. He’s amazing! And parenting him is the richest experience of my life, teaching me things about transparency, compassion, patience, acceptance, and LOVE that I would have never experienced had I not been honored with the job of being his Mother. And as true as that is, it is also truth when I tell you that some days are REALLY HARD. Caring for a human being who requires 100% hypervigilant supervision and attention is an all consuming, often times exhausting position to be in. One that you really can’t wrap your head around unless you’ve lived it. We do our very best figuring out, day by day hour by hour what is best for Sam, his older sister and our family… we have custom designed our life so that that kind of creativity and flexibility is possible.
When you are Sam, you are sometimes thrown for a loop by things like getting out of the bath and finding your fingers and toes all pruney. Its upsetting and you might cry and wail and say you’re going to cut off the wrinkly parts of your body. Its pretty hard to feel uncomfortable in your skin and not have a grasp on the concept of time and not trust that your fingers and toes will be back to normal in a short bit. And if you’re lucky you have a Dad who will help talk you through it and eventually make you laugh and know that the world is an alright place to be.