I saw Eric’s parents again today…
Some of you may recall when, last winter, I posted about meeting Eric at a local flea market, how I met him in one of those ever so frequent coincidences that happen just often enough to lead some to believe in pre-ordained fate, but just so infrequently that the rest of us won’t buy in. 10 months have gone by since I met he and they, time that has flown by for some, but seems more like an eternity to others.
They did not have Eric with them today; today instead they had some respite. They had their other child, a beautiful little tow-headed cherub just old enough to be more boyish that baby. He seems to be free from the demon that haunts his older brother. He fiddled with a few of the cars on my table while his parents and I chatted a bit.
Life has been difficult for them. They have maintained their sanity for the most part, and they are still married (raising special needs children with severe behavioral issues is often more than a marriage can withstand). As always, I of course asked about Eric.
He isn’t doing so very well…
They have tried so very many things, and nothing seems to be helping. At all. Eric’s father asked if I had heard about the new thing that had come out (L-carosine, an amino acid which a dr. in Chicago announced just this week seems to help many autistic kids with cognition and behavior). I mentioned that yes, I had. I asked if they were going to try it and he said yes. (We are too, for my boy, but that is another story for another time).
I asked them to remind me what else they had tried. Mom had walked on and Dad said that I would need to talk to her, because she kept better track than he. When she came back, Dad took his leave and I asked her about Eric.
She mentioned that his behaviors were getting worse. The staff at the elementary school he attends were in over their heads with him. Last spring, early, because of Eric’s escalating behaviors the county had an outside consultant come in and do an in-service to give them some training in positive behavioral supports. I know two of the people who attended (this one was mandatory) and it did not go over well. Several of the staff thought they should not have to do anything of the sort, that Eric should just conform to there current methods and philosophy. Much of the session was wasted in arguing, and the consultant wrote a very negative report about the staff, which of course my district promptly buried.
I asked if they had considered trying Risperdal (ordinarily I would never push medication like this, too many unknowns). Several small controlled trials have suggested that Risperdal in low dosages can help autistic kids control their obsessive tendencies, can reduce their anxieties, and smoothes out their behaviors. She laughed and said he had been taking it for almost a year. I asked how much and she said “2” She did not know the exact dosages, just that the dr. kept pushing her to up it to “5” (despite the fact that all indication to date says lower dosages is more effective for auties than the higher dosages associated with adult usage for mental disorders.
I asked her how it was going, and she said they used it to knock him out to sleep. They can’t give it to him during the day or he has extreme outbursts. The schools insisted that they use it during the day, despite her informing them what would happen, so finally she said “ok, here you go”. This experiment lasted all of one week. The second day Eric hit a woman hard enough that she had to leave school, the last couple days of the week the school personnel couldn’t even get it down him. They realized that what they were asking was a mistake, and they have not pushed her again for medicating him.
Previously, they had had him on Luvox, but it made him extremely hyper, and made his compulsive tendencies increase dramatically, to the point where he would obsess endlessly about all the details of things around him. Luvox also made him stay awake for 3 days at a time, and with both parents working fulltime, that was no god.
They had also had him on Ritalin previously (despite the fact that Ritalin almost never helps autistic kids the way it seems to help some kids with ADHD, for many drs. it is of course the first line of medication). Ritalin also made Eric more active, acting more like a stimulant, and less like an attention enhancer for him.
I asked if they had considered more conventional tranqs, even though I really do not like the idea of it at all. They said that was going to be their next discussion with the dr.
I asked if they had seen any of the beginnings of tardive dyskinesia, a neurological damage tied to neuroleptics (including Risperdal) and she shook her head in a puzzled fashion. I explained it was a motion problem, similar to tics, which would start in the mouth (usually) and then progress into the limbs. I showed her what it would look like, based upon how I have heard it described by others who have seen it firsthand, and Dad said, “yes, he has been doing that for a while now.”
I wanted to cry then, because medical science with all it’s body of knowledge was completely failing this family. First Eric descends into autism shortly after receiving his MMR (I don’t give a damn what the FDA says, a large subgroup of autistic children were triggered by an adverse reaction to the combination live-virus jab.) Then they fail to treat his elevated lead levels (like they would have with my own boy, had I not been as perseverant in my insistence that he be chelated), and now all the standard medications which are used to control behavior like Eric’s fail to work, or even worse, aggravate the very behaviors they are supposed to address AND leave him with the beginnings of permanent neurological damage that will in all likelihood be with him for life.
I then asked a question that I will always struggle with, both for it’s inherent ugliness as well as the desperate inevitability that it presents… I asked her if they had yet considered residential placement. (I was thinking of them, Eric’s parents and his baby brother. I firmly believe that what is best for Eric is to remain with his parents, with people who will love him regardless of his problems. But often raising a very difficult child becomes so damn overwhelming that none are truly served by refusing to consider other living arrangements.)
I think that you could have heard my chin hit the floor from across the flea market when she replied “we tried that last spring.”
They sent Eric on a trial basis to what is reported to be a very good home across state. By all recommendations, it is one of the best in-state facilities for residential care of autistic children in the region. Eric lasted one month and thirty days before they had to go fetch him. The staff had no clue what to do. He was not worked with using appropriate therapies, he was basically just confined. Eric drove several workers out the door (when you are making little more than minimum wage, you often do not attract people who would be considered dedicated to the difficult work of caring for a profoundly autistic boy). He bit one woman hard enough to draw blood and she was insistent that he be tested for AIDS. Eric’s mother laughed a little at this, commenting that he did not have HIV, and agreed to have him tested. I wondered at THAT ordeal; drawing blood from an autistic child can be a tremendous ordeal in itself.
When they went to retrieve their son, they had their younger boy with them. They walked into the house that served as the home, and when they saw holes in the wall, their younger son pointed and said “Eric did that”. He was correct, Eric made 8 holes in the walls in the place, using his forehead as the blunt object to break the plaster (not gypsum board, but steel mesh reinforced plaster, 8 holes, not cracks, twice he bled severely enough to warrant a trip to the E-room.)
What is left to try when you have exhausted your available options?
So now they are going to try L-carosine, on the basis of one report lacking not only peer review, but even basic blinded controlled study. What choice do they have? Is it any wonder that the con artists find the parents of profoundly disabled children such easy marks for their snake oil? (I will say I am not calling L-carosine snake oil; at this point that remains to be seen). What choice do they have? The Diet failed Eric, secretin failed Eric, Ritalin, Luvox and now Risperdal failed Eric, the schools failed Eric, social services failed Eric, residential placement in a specialized home failed Eric…
I think about inevitabilities, how time is running out for them to get a handle on him and begin the process of recovery. Eric will soon be coming of age, his blood stream getting flooded with that most dangerous substance, testosterone. There are few things on Earth as dangerous as a teen-aged male. That is why we make them Marines, that is why bin Laden makes them suicide bombers. Testosterone increases aggression and shortens the fuse. How must it impact the behavior of an autistic boy for whom drugs which are used to sedate instead stimulate?
I think about a mother and son in England, and a father and daughter in Canada, and of a mother and son in Northern California, and I find myself wanting to pray “not Eric, not his parents, please, not them…” What else can you do when all of medical science has failed, but pray?