About My Past, pt 2: Angel's Child (long)

For those who don't remember the previous entry in this series, here's the link. This one is just as long.

I was the oldest in the family with three brothers and two sisters. My brother Joe was born two years and a few months after me. Early pictures of him show beautiful child. Yet, you can see that there was something in his eyes that wasn't right. Those pictures were taken during peaceful moments in an otherwise catastrophic time.

From birth, Joe couldn't feed, couldn't suck a nipple correctly, and couldn't keep anything down when he did. As my parents struggled for a year to keep him nourished, doctors were at a loss for a diagnosis. Then, he began to have seizures.



Over his two years, other symptoms and abnormalities accumulated, baffling doctors. The OB-GYN conjectured his delivery might have caused it. (You'd never hear of that today, and the very fact that a doctor would offer that explanation suggests my parents' degree of suffering.)

The diagnosis wouldn't come for decades, but the prognosis doctors gave in Joe's second year was devastating: profound cognitive disability; microcephaly (small head); curvature of the spine; seizures, chronic trouble chewing, swallowing and digesting; he showed no verbal progress and no hand-eye coordination, indicating no ability to learn language.

My parents suffered further by having this news broken to them by a doctor with pathological bedside rudeness, the decade's equivalent of Dr. House. (Not actually a small detail. This would prove important in family relations later.) When they asked what they could do, the good and surly doctor told them to institutionalize him. He warned that he would drain their time and energy, and his presence in the home would traumatize their other children.

After checking the quality of institutions, they decided to keep him under their direct care. My parents were adamant to prove him wrong. Or evil.

Without a diagnosis, my mother was left to her paranoia to figure out what went wrong. She decided that Joe started out with a bad stomach, and the milk formulas caused the rest of the damage. She would blame doctors and had a John Birch-like “fluoridation” syndrome about milk. Joe's condition would aggravate her mental illness throughout the remainder of her life. She lost most of her trust in medicine and saw herself as protecting her children from doctors as well as watching after their health.

Joe turned out to have Angelman Syndrome. Doctors had no explanation at the time because this disorder wouldn't be discovered and described in medical journals for two more years. Decades passed before genetics could identify the cause, and my mother would have never accepted it: a defect on the 15th maternal chromosome. Even so, usually Angelman is not an inherited disorder but rather caused by a damaged ovum. (It's intriguing that central St. Louis where my parents grew up was a toxic wreck of an environment.)

The syndrome causes the slew of severe birth defects, with an overall theme of a lack of fine motor control. Angelman children can hold a cup, but they can't brush their teeth. An AS child can generally understand speech, but can't form words because he can't control his tongue, larynx or lips well enough. They can't learn to sign because they don't have the hand dexterity. They can shuffle around slowly with a teetering gait, but not walk normally. They can see, but can only fix their eyes approximately. They usually have to be shown around obstacles and warned of things like curbs and steps. Other problems including drooling and trouble chewing. Their arms are usually locked with the elbows completely bent, but physical therapy corrects this. An Angelman child usually never learns more than six slurred words.

There are curious features that aren't listed as symptoms. Joe's palms are silky smooth, his fingers very long. His hands are overly sensitive. Joe hates having his palms touched or his hands washed, and clipping his nails can cause him to wet himself. Angelman children are said to have a fascination with water, though with Joe, it's more of a quirk. If he finds a glass of water, he'll carry it to the sink and pour it out. For drinking, he really hates it. (Though we discovered recently he will drink carbonated water).

One symptom is an unusual EEG. Though Joe can't communicate with language, he can understand much of what you say. It's accepted that Angelman children do comprehend speech, and that they have much more non-verbal intelligence than is apparent.

However, the emotional behavior that identifies Angelman and makes it truly bizarre disorder is happiness. AS sufferers are jolly, friendly people. They laugh uproariously and frequently. They're excitable, jumping and shouting for joy, often with no cause or excuse.

My brother has an inane, non-verbal sense of humor, reminding me of Harpo Marx. In fact, after the diagnosis came in, I've wondered if Harpo modeled his stage persona on an an Angelman child he was acquainted with.

When Joe was two, my mother taught him to “honk noses.” He still uses it as a greeting, and it's still as as funny to him in middle-age as it was for him then. His favorite DVD's are Benny Hill videos. Noises are fun for him. As a child, he used to throw all kinds of things down the steps and scream with delight at the sounds. We had to be careful what he left out on the second floor, because if it wasn't anchored down, he would either toss it down the steps or into the laundry shoot.

He has always loved music. He has to have it playing it at all times, from three different sources at once, including when he sleeps. Frequently, he'll hold an electric toothbrush up to his ear, and sometimes he'll take it to bed with him.Talking toys entertain him.

If you judge success in life by happiness, then Angelman children are born successful. I can't think of how harsh Joe's condition would have been for everyone involved if it weren't accompanied by this ecstatic disposition.

However, it also had its serious drawbacks. Like Harpo, my brother is mute, but unlike him, he's very loud. My parent's house was always noisy, 24/7. Being happy all the time meant Joe got up at 2 a.m., cranked the stereo, the TV, and the furnace all up to full blast (he liked the house really warm). He would do this while shouting at the top of his lungs. His parents' and siblings' nerves were always at different stages of frazzle. If you look at pictures of our family at the time, everybody's hair was mussed. It's hilarious to see a picture of me, my siblings and parents standing next to anyone else.

Since AS children never learn to talk, none of the happy noises they make are articulate. No, instead what you hear is a meaningless, droning bellow that soon works up into howls and screams punctuated by screeches of laughter. It would get so loud that conversation, TV, homework, napping, enjoyment of music, or peace of mind, all became impossible. He'd carry on like this for a quarter or half-hour, or even an hour at a time. By the end of one of these celebrations, my nerves would be shot.

He also loved jarring sounds, like the noise of the needle being zipped across a vinyl record. Yes, he came up with that maneuver before rappers did, minus any semblance of song. He did it while splitting his sides with laughter, and my parents allowed him to ruin every record in the house. He was given full run of the stereo, which he would also ruin. Frequently in the morning, he would crank the music up all the way. You could hear it across and down the street from the schoolyard.

When my brother needed something, he couldn't speak. He'd yelp, bleat, or scream. You might imagine how this din kept people in the house anxious and unnerved.

My parents normalized all of this. For birthdays, the other siblings and I would get a cake. Joe loved to hearing Happy Birthday and blowing out candles, so after the birthday kid got the ceremony and before serving the cake, my parents would light a few candles for Joe and would sing it for him. Very sweet, but remember Joe's control over his mouth was poor, and he'd drool. When it came time to blow out the flames, he would spit on the cake. Then they'd slice it and we'd eat it like there was nothing wrong, even when we had friends or relatives over, my parents would not alter this routine. No, all the guests got served spit cake, too.

Recall my mother was seriously mentally ill and shouldn't have been watching even six healthy children, nor even a single healthy one. My father was too busy doing the Madmen thing and delegated home duties to her. (He would sometimes get people to help, who varied in quality, but that's a different story.)

Having Mom watch Joe meant he would sometimes escape. When he did, he wouldn't go much of anywhere, good thing, but he'd do things like lie on the sidewalk with his pants down, mortifying his siblings.

Because my parents had to take him to the bathroom, they never really fastened his pants completely. Quick access was emphasized over fashion and modesty. This meant Joe would often expose himself to people. He thought this was funny. He did this at least once to my sisters' friends, and at least once in Catholic Mass, during Eucharist, smiling and chuckling all the way. The heathen.

My emphasizing these more difficult or freakish things might lead you to believe he's a lot more irritating and difficult than he is. He's not bad to care for. Give him his music and videos, feed him, help him with his toiletries and that's ninety eight percent of caring for him. He'll get loud a few times a day, but you can get ear plugs. 

Even as a kid, he wasn't bad most the time, and his slapstick sense of humor was contagious. However, my parents made things worse. For instance, they didn't have to have him spit on everybody's cake. They could have accommodated him without that. They never thought of it, which describes their approach to their other children relative to Joe. 

The message to me was to keep myself out of the way and shut up about my needs because my parents were taking care of him. In my teenage years, I had a difficult time rebelling against this cause. I couldn't. My sister had more success.

Between Joe's Angelman and my mother's psychosis, my siblings and I lived in a traumatic, squirrel-cage of an household. All of us were affected into adulthood. Even when she wasn't hassling you, even when she was medicated, my mother could provide no nurturing. She was as likely to be out of touch as she was to be abusive. Therefore, things deteriorated until well after I had grown up and had moved out the first time. (I joined the military, another story.)

The one bewildering thing my father informed me of recently was that Joe had seizures from infancy. I had no memory of those whatsoever. I thought he was atypical for AS because he began to have them in adolescence. If he had them all through my childhood, he must have had seizures in my presence at some time. I must have known he was taking medication for them. You'd think. I don't remember anything. It's the first time I discovered something missing from my childhood memories, possibly from trauma.

After Joe, my siblings and I had to be really sick for my mom to take us into a doctor. (Though we missed school a lot simply because she was often too ill and out of it to get us out in the morning. If you said you were sick, she often wouldn't challenge it.) She would try to diagnose and treat things herself. We all went through childhood with a chronic case of allergies and congestion because she thought it was dangerous for doctors to treat something so minor. Between her and my dad's medical incompetence, it's a surprise all their children lived through childhood.

For example, my mother's treatment for an infection was to put a wet bandage dipped in Epson salts on the wound. She said that this would “localize” the infection. Thankfully, though, she also remembered the time before antibiotics, and if the wet bandage wasn't working, she'd get some of those. Whenever the infection cleared up, it was the wet, salty bandage that got the credit, not the antibiotics. I remember it awed my Dad how uncanny her treatment was. Yeah.

Joe wasn't diagnosed until after Mom died, and this was no coincidence. Her faith was such that God wouldn't do such a thing to her. No, some evil did it (implying, of course, that God allowed it to happen, but didn't commit the act Himself. He would have allowed Satan to do it only because Mom wasn't holy enough.) This conclusion turned into conspiracies, which soon encompassed my father and his relatives.

She didn't lose her distrust for doctors nor her animosity for milk-formula companies even when she was treated and purportedly well. She was also suspicious about state agencies, which meant the state knew nothing about Joe until after her death. It would complicate getting aid for his care.

No, she had already figured it out, and wouldn't hear of getting a real diagnosis. Any discussion related to it could send her off into a tirade. More than that, she wouldn't have accepted the fact that it could have been caused by a flawed ovum from her body. Of course, what's sad about that is it wasn't her fault. There was nothing anybody could have done after Joe's birth to make him normal. Ironically, his condition is what they used to call “an act of God.”

My parents would never take responsibility for their other children's psychological welfare. Part of the reason was “Dr. House's” insensitivity. After keeping Joe, they were determined never to admit Joe's presence was in any way traumatic to the rest of their children. This would have been fine if they had stopped there, but they also completely exonerated their own behavior because they had Joe to care for. In my early 20s, I begged my father to send me to a psychiatrist. My life had collapsed, I told him I needed help. I couldn't get along with anybody, I was depressed, moody, had panic attacks, couldn't understand instructions. I was unemployable. Instead, he got defensive.

Money wasn't a problem either. My father literally made millions in the '80s. Yes, millions of dollars. He could have done it, but that would have been a sign of failure for him, a failure of his parenting. He could never admit that.

I don't fault them for caring for Joe. I think that part was noble. I fault them for neglect of their other children with Joe as an excuse, and I'm not talking about due to accommodation of him.

For myself, I grew up a nervous, moody, sub-zero confident, under-socialized wreck. The results of that are that I never thrived, never had a family, and by 2009, I had my breakdown and lost what little I had. Now I'm on disability.

Meanwhile, my parents have squandered their wealth, including the SSI Joe received for years, which they might have bothered to put aside. With Mom gone and Dad getting feeble, it would be nice for my Dad to know that— after his death— his oldest son could guarantee Joe's care. As it is, that won't happen. If I think about that too much, it depresses me. I love my brother very much. I don't blame him. He's innocent, and always has been. Frequently, he's a source of joy.

UPDATE: 2/8/13 3:06 p.m. I must clarify something: my father was never a millionaire. He made more than three million dollars overall in the late seventies and then through the eighties when his salary was above $300,000. He never had a million dollars at once, however, and never made that much in a year. He's immune to saving. In fact, he and my bipolar mother somehow managed to spend it faster, mostly by taking the family on trips everywhere, and trying to keep residences in both Manhattan and St. Louis.There's a completely different entry about all of that for later.

My parents went from rags to riches back to rags in their lifetimes.