I was going to post about several topics this week.
- The nature of Indie Craft and art induced flashbacks to the years 1968 - 1973.
- The many bags I am about to place in my Etsy shop.
- The Irish history of the Gorman,Hartman, Herancourt, Nelson, and Jones families.
- My new favorite books
- Favorite blogs
Instead, I was hit by the A-bomb.
As in Alex.
I know, he looks like he wouldn't hurt a fly in this picture with his caregiver.
Don't let appearances deceive you, he can erupt with very little warning.
And most days I can feel guilty with very little warning.
99.9% of the time, his care-giving staff are excellent. When he was very sick a few weeks ago, they provided round the clock care, cleaned up various bodily fluids emanating from various bodily orifices, and took him to the doctor and the hospital. They oversaw blood and other tests. They did not complain (to me). They were there 24 hours a day. They deserved a humanitarian award.
Wednesday, something went wrong. It would not have been a big deal for most twenty year-olds, but it was major for this one. This time it involved two police cars. We usually only have one.
Statistics vary for the incidence of childhood autism spectrum disorders. The numbers don't matter because in this case, misery does not improve with company. Many families spend years beating themselves up trying to figure out how this happened to their child, and their family even though it doesn't help. Families of children with significant disabilities have incredibly high divorce rates. Autism does not impact just the lives of those who have that diagnosis, it impacts whole families.
This week's episode of Parenthood just scratched the surface of how siblings are affected. Max's behavior would be a picnic for my kids. We would happily trade the bites, screams, and isolation they endured for a pirate costume.
In Alex's case, we don't have to look for answers. He was born too early. He was a surviving twin. He had major surgery and lost part of his bowel before he was four days old. He was born with bilateral microphthalmia; his eyes did not develop. He is blind. He has seizures. He has OCD. He has Cerebral Palsy. His back is twisted. His brain cannot process information properly. Alex was not expected to survive.
And when things go wrong, I blame myself.
Don't get me wrong. I know that it was Alex and not me taking swings at the football coach. Years of therapy have helped me put things in perspective, but when these things happen, I still feel the shame I felt at his birth when I could not keep both babies alive and well. The shame of not being more aggressive with my doctors when I knew something was wrong. The shame of not giving Alex a better shot at a normal, happy life. It takes a few days to exorcise those emotional responses. Even when I know...
There was a meeting at the school yesterday that was scheduled before any of this hulabaloo started. We were trying to figure out what Alex would be doing next year. This big team of educators, caregivers, and therapists took an hour out their day, after school hours, to make plans for my child.
How do you thank people for this sort of kindness?
At the end, several folks on the team listed all the progress that Alex has made this year. They wanted me to know that it was not all police cars and aggression. They wanted me to know that he can get a drink at the fountain without pounding the students ahead of him with his cane. He has actually entered a shopping mall without screaming. He has attended several classes in the regular special ed classroom.
These things may not seem important to the rest of the world, but for us they are miracles. It was easier to put away my nonproductive negative emotions after hearing their words.
I ask again, how do you thank people for this sort of kindness?
We thank you, caregivers.
We thank you, educators!
We thank you, therapists!
Thanks for making Alex's life more interesting, productive and happier!
I thank you every one!