From Reflections: Parenting, Life, and Random Ramblings, Written by Possibly the World's Oldest 30-Something...
I didn't sleep last night. Still reflecting on Andrew's doctor's appointment and the visit to his school, the sleepless night brought a realization. No one can get what it is like to have a child with autism unless they themselves have been touched by autism, or a similar disability. No, it's not the worst thing in the world, nor is it something which is terminal. I totally get that many families have more challenges to live with than autism. It's not like Andrew will die, yet in some ways it seems like a constant mourning process in concert with loving and celebrating him as I do my other kids. His autism is never going to go away.
Who knows the "whys"? I don't. Was it the 5 day long hellish Pitocin induction? Or perhaps the fact I chose one type of therapy over another when he was in Early Intervention, or allowed him to be "screened out" of EI at 16 months? Or the abysmal special education services he received from perhaps well-intentioned people who simply didn't get him from 2nd-4th grade? It does not matter.
The critical comments and judgement from some people is part of the life of parenting a child with ASD. (It's amusing that a common trait of these folks is they don't live with autism or similar challenges.) People tell me, sometimes bluntly yet often not directly, how annoying, crazy, and awful Andrew is. He absolutely is picky, but he is also a very good judge of people. I only want to be around people who don't judge and who love him how he is- autism and all.
It's not like it's complaining. This is life. The ups-and-downs of autism dictate what our family is able to do. Long ago, I accepted this. My heart breaks for a young man who deserves so much more and who is trapped in a body which has this disorder in every cell.
I've faced my share of challenges. I've given birth to a preemie, been through an awful divorce preceded by domestic violence of the worst kind, and faced my own own health issues. There is not a choice but to support my son and to live with the autism. I try the best I can. I don't expect much from others anymore as my experience is I usually ending up disappointed. Too many people have let me down, and more importantly let Andrew down. I pray that God gives me the strength to love and care for my child in the best ways possible for him.