The Result of Years of Neglect

Like most every family with an autistic child that we know, we've done a lot for Charlie since we knew he was autistic back in 1999, from educational therapies (ABA, speech, OT), to biomedical treatments when he was younger, to more "traditional" medical ones. We've moved several times to find the best educational placement for him; we've given up jobs (a tenured full professorship, in Jim's case), taken whatever jobs came our way, and spent (poured) a significant portion of our finances in to paying for Charlie's needs. Sometimes things haven't always worked out quite the way people told us they would (like a one-time visit to do cranio-sacral therapy on Staten Island, or various medications and supplements). Sometimes we've really had to say to ourselves, what were we thinking?

At which point, Jim and I have reminded each other of what is a sort of promise we've always made to Charlie, that we'd do everything we could to help him, support him, teach him, and that we'll always be with him, every step of the way.

But what if we had not done all this? If we'd just said, we'll just let Charlie be, that's the way things are? If we just......did nothing?

I'm guessing he wouldn't be with us anymore, for one thing. And that he couldn't say even the short phrases he does. He certainly wouldn't be riding bikes from town to town.

Seeing what's happened to my mother-in-law, who's had psychotic depression on and off for the past fifty years, has been making me think a lot about what would Charlie be like without all of our efforts, and his.

My mother-in-law's depression has not been properly treated for all these years. She'd been in and out of psychiatric hospitals while Jim and his sisters were growing up. She's been on various medications for many years (one reason why, though she's about my height---5 feet tall---she weighed at least twice as much as me when I first met her). But more than my mother-in-law's psychotic depression going untreated, what's harmed her immensely has been the denial of her condition: While it's acknowledged that she's had mental health issues, the extent of these has been unacknowledged by everyone except for Jim, who's very close to her---her biggest fan---and credits his interest in history and stories to her. Back in the 1950s, she had a job selling ads for WOR in New York and loved it. She married my father-in-law in 1953 and has never worked since.

I met my in-laws in 1994. They mostly stayed in their house. On a rare visit to see us in St. Louis (where Charlie was born in 1997), my mother-in-law was the first to suggest that something "wasn't right" about Charlie, sitting quietly on the hardwood floor, absorbed in a sunbeam). In 2006, both in-laws had to have knee replacement surgery. My father-in-law returned home in June, just around the time that we moved into their house, so that Charlie could start attending the town's public school autism program. My mother-in-law did not return for months. While in a physical rehabilitation facility with her husband to learn how to walk again, she became more and more depressed. She was in a catatonic state when Jim (no one else thought anything needed to be done) had her placed in a psychiatric facility. She got better there after a lot of therapy and was able to return to the physical rehabilitation facility where she learned to walk again (somewhat---she has a huge fear of falling) and enjoyed trivia nights and the company of her roommate.

Once home, things returned to the way they had been (except, of course, my in-laws' household now included Jim, Charlie, a live-in nurse from Ghana, and me). My mother-in-law once more rarely left the house. While some efforts were made to attend to her mental health---a psychiatrist (who turned out to be a child psychiatrist) was found---not much else was done. Jim spoke up constantly for her needs, both when we lived with my in-laws and after we moved into a condo of our own, but it was not felt that more needed to be done, according to the rest of Jim's family. Jim repeatedly brought up the matter of getting more psychiatric treatment to his father and sisters, but these appeals went nowhere.

My mother-in-law has been in the hospital since two Fridays ago. She was brought by ambulance with inflammation of the pancreas. Jim and I have been to see her a couple of times and it was quickly apparent that she was hallucinating: She thought her younger sister, who died last summer, had visited her. She thought her husband was in the room. She saw the edge of my scarf and asked me if it was soft-serve ice cream. She didn't know what month it is, and thought her husband was shopping in New York (he hasn't done that in I don't know how many years). We went to see her yesterday and she was rigid in the bed and asked us repeatedly for blankets. Jim's been talking to the nurses who told him, this is a hard case.

There's a lot more I could say; there's a lot that could have been done, had the extent of her depression over the years been acknowledged, and real, long-term treatment sought.

We've tried very hard to be honest about Charlie's needs and challenges, and the extent of the severity of these. It's not easy to do this and it's sometimes meant taking measures that I'd rather not have had to do, but that have helped Charlie. And if my mother-in-law could have had her needs fully addressed years and years ago-----I don't think we'd be standing at her bedside now hearing her talk about people who aren't there, scared to ask for another blanket.

Jim got her two more and I asked the nurse for another one, and I'm looking for a fleece blanket---the kind that Charlie asks for and loves and that we have many of, for calm and comfort---to give her, at our next visit.