When someone we love receives a chronic diagnosis, it follows that we are flooded with so much information that we cannot possibly stop everything we must do during the day and night to learn it all. How do we forgive ourselves for not having given them everything they could possibly have needed to get through their lives in the best way possible?
It becomes worse when we find that one expert’s information contradicts another expert’s, who also knows everything.
In 2005, when I knew I was not well, my doctor insisted that nothing was wrong. I became depressed and finally fired her. But before that, I was sent to a psychiatrist, who misdiagnosed me with an eating disorder, based upon her own issues. When I went to a different primary care physician, he sent me to specialists, one of whom diagnosed me with a permanently disabling illness, the illness that was causing me so much pain and was why it was so difficult for me to eat. My illness became much worse as I continued to eat foods which caused further damage. I was taken off of a medication that was preventing frequent migraines. I had to write a letter begging to have it re-prescribed and they see now that it causes no side-effects. All because of a psychiatrist and her personal issues!
In the case of our autistic son, Tim and I learned from some experts what he needed, yet other “expert” decision-makers from the school district did not listen. When Joey was in second grade, I witnessed him running around the classroom when it was not his turn to receive an independent lesson, picking up a heavy glass object, ready to throw it until someone who was teaching another child took the object away, interrupting that child’s learning time. Yet, the school district would never fund someone to re-direct our son because they said he would become dependent upon that person. We could not afford an attorney.
My son knew his alphabet, in both upper and lower case, before kindergarten. The teachers gave him little reinforcement, only tests, and he regressed. They said that he really did not know these things in the first place because he couldn’t generalize his knowledge in the classroom. The truth was, he was “sandbagging” them. He generalized with us and others all the time. He was allowed to misbehave so often in the classroom that he showed no discipline when with them at any time, unless he was strapped to a chair during music. Had we had the money, we would have paid the same company that the State provided us with to help Joey at home after school with both discipline and learning, to provide Joey with a shadow at school, re-directing him to proper behavior when he became unruly.
Joey is more than ready for residential care. But again, this involves financial help from the school district and they do not provide it.
We know that whatever happens, it could always have been better. And, it could have been much worse if those in our care didn’t have the love and care that we give them.