The secret is to make a pile of money

Let’s just point out the bad people to start with: the Arizona state legislators. I’m guessing it is mainly Republicans, the people of personal responsibility and low taxes. The state has a health program of sorts for low-income people.

My son-in-law is a teacher and the father of a family of four, so he is low-income (look at stats on AZ re teacher pay – why do you think we had a walk-out last week?). He has two boys who are autistic (diagnosis: autism spectrum disorder – ASD). My daughter has worked her tail off jumping through every hoop the school district and the state put up for her. She got their diagnosis of ASD quite late, so all that early training EVERY expert says is essential went by the boards. Nevertheless, they could get meds and therapy on the state health program.

Tune in to us, my wife and me: due to the low salary, my son-in-law could afford only a very small house. One of the two sine qua nons of ASD is perceptual sensitivity. You don’t know how sensitive until you’ve lived with it. Our house is huge and two-storied. So six months ago after an episode at home, we moved him in with us. Very, very tough on us. What we thought was tough was getting him to the therapists and the doctors and meeting with the therapists, etc. We’re both 76 and on a fixed income and all that driving and meeting with people was made easier only by the fact that we were both counselors and so had a leg up on therapeutic interventions, etc. In fact, we had just started with a new therapist when the old network went under for some reason when………..

At a meeting with two case managers, we were on speaker phone with the new therapist who rang off to check on eligibility for the boys regarding a particular program. He called back a few minutes later to say that all services had been terminated as of the day before yesterday. My daughter broke down, my wife was ready to march on the capital……. but there it was. After some calling around, my daughter found a person who told her, “I wish you had contacted me first. This wasn’t supposed to happen.” Nice.

So we began the process of weaning him off his medications, powerful drugs. My daughter threw in the towel (this had happened to her several times before). She manages the boys extremely well; both are good students (the one with us is in advanced classes and taking college algebra, engineering, and physics) and she had to come over twice to work with us because we had not put him on the rigid schedule he needs to function.

Needless to say, his rigid schedule means our rigid schedule. Plus, as the meds wear off he gets very testy and angry. Did I say we are 76? The expense is not light. We are unraveling. Maybe once the meds get out of his system, he will calm down, the tics will stop, and we can reach an equilibrium. Who knows? Or…..

I came down this morning and my wife was on the phone crying. She had called the senator’s office and been well received. She got some referral numbers and began calling. Perhaps due to her background as a teacher/counselor, a retired person, something, she got all her calls returned. Maybe she is just more forceful than my daughter. Who knows? Anyway, we’ll see what happens. Stay tuned.

Next day: the pediatrician decided to go ahead and write a referral to an ENT specialist. In the last couple of days he has complained of pain in his right ear. This morning I was awakened by him yelling and slamming things. When I came down I found my wife trying to dissuade him from going to school, extremely unusual for her. But he said the physics project had to be done and he had his part to do, otherwise everyone in his group would get a zero (does anyone understand this?). The pediatrician’s office is supposed to contact us re the referral. My suspicion is that he got water in his ear and that is causing the discomfort. My daughter told me something I did not know: when his hearing was checked a while back, the techs were intrigued and so cranked it up and he was hearing sounds humans aren’t supposed to. If his autism didn’t prevent him from understanding teasing, I’d call him dog ears. But he can’t eat in restaurants or go to parties because of the ambient noise.

I’ll keep you posted.

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