As every parent knows, any event might trigger memories.
A few weeks ago I lay immobilized in the Emergency Room with the catheter limiting any range of motion. My son, who is 29 and has Down syndrome, decided that my infirm and incapacitated status would keep me occupied so I couldn’t say “no” to any of his plans to explore the hospital.
Two hours later, just as I was getting really worried, he arrived with a big smile. He had gone to the cafeteria for a three-course dinner, including at least two slices of blueberry pie. Then over to the lab, where he introduced himself and hoped to see a friend who worked there. Finally, he went up to the seventh floor to explore the neurosurgical unit. (“Dad, I wanted to see where they worked on brains.”)
So much for Homeland Security.
Memories of twenty years ago, when he was the patient, all came back. We were in the emergency room of a tertiary care hospital, and my son was delirious with a fever of 105 degrees. The doctors tried to held him down to insert a needle in his wrist. “Bad touch! Help! Bad touch! Abuse! Abuse!”
As some guards came running in, at least it was good to know he could remember one of those fourth-grade lessons on bad touches.
Having had some experience in chaotic medical situations, I asked four of the doctors to help, with each of them gently but firmly holding down a limb. I cupped my sons’s head into my hands and whispered, “We have to find out what kind of germ is making you sick. The doctors have to put a needle in your wrist. It will hurt worse than anything you’ve ever had. But if we don’t do it, the doctor’s won’t know what kind of medicine to give you to make you better.”
There were some loud screams, and a few loud and incoherent groans, but then it was over, and the guards didn’t come running.
Two weeks later (everything now A-okay), a psychologist friend sat down and suggested to me I had caused post-traumatic stress disorder in my son by holding him down; further, it would be good for me to join a support group to do a better job of being a father of a special needs child. Uh-oh.
So I asked my son, “Was there anything Dad did in the hospital that made you upset?”
“Yes,” he said.
“What did Dad do?”
“You made me share the videos in the room with the other kids when I was getting better. I wanted them to myself.”
“Did it bother you that Dad helped the doctors hold you down?”
“No, Dad, you had to find out about the bad germs. But next time don’t let the other kids take the videos.”
One thought leads to another, and I recalled his birth at 3 a.m. on a Halloween morning. I was holding him in my arms and said, “Gosh, baby has Down syndrome.” Now this was not a complaint, but an immediate acceptance. I was quickly reprimanded by everyone in the birthing room, because fathers don’t have expertise in these matters, do they?
My son is attentive in church. A few years ago, the priest gave a wonderful sermon on the Fourth Commandment, with lots of good things for the children at the Mass to remember. Afterwards my son complained to the priest, “Father, why didn’t you mention the Eleventh Commandment?” The priest smiled, and asked about that “11th commandment,” expecting a sweet response from this Down syndrome young man.
“It’s called ‘Honor Thy Children.’”
I hope this did not in any way imply that this particular son was not being honored at home. Nevertheless, I received more than one….er…..judgmental glance.
I always thought socialization and impulse control were two of the most important things to focus on in school with my son. His grades were always praised, even if they could have been higher. One week I got called into school.
“Your son’s grades have suddenly gone way up. It’s like he just went up a grade in everything. What is going on.”
I could only say, “Geesh, I have no idea.”
So I asked about this at home. “Dad,” he said, “you grounded my brother last week for his grades. I don’t want to get grounded like him.”
(If you have a special needs child, make sure you have the right level of expectations so they don’t coast or slack-off too much. Some of them may do this.)
It is hard for me when my son is at activities with his peers and their parents. Some of the other young people are much more impaired than my son. Many have a hard time saying even the simplest words; others have fine and gross motor problems that require a wheelchair or a one-to-one aide. So I try to ask questions about the good things the others are doing, rather than talk about my son’s accomplishments.
I don’t react very patiently when others (especially someone I have just met,) asks “What kind of planning have you done for the future? Is he going to go in a group home?” I don’t know why, but many ask this. I usually mutter and fume inwardly. I’m at the point where I’m going to say to the next person who asks this, “What kind of planning are you doing for your husband/wife when they get old? Have you found a nice nursing home?” I haven’t said this yet, as it would be rude, and maybe even a matter for the confessional.
Group homes and other programs are necessary and vital. My son has his own opinion on this. After I took him to see “Annie” in New York City, he said, “Dad, I think group homes are orphanages for retarded people.”
Last week my son came to each of my college classes and met with them for a (short–30 minute) chat. When I suggested that time was up and it was time for him to go, he turned calmly to the class and said, “I don’t always listen to that pompous old windbag over there.”
Everyone was shocked, and even a few jaws dropped, but I’m used to this as I’ve heard it more than a few times before.
“He’s really a big doofus,” my son said, “But I love him.”
William Van Ornum is professor of psychology at Marist College and director of research and development/grants at American Mental Health Foundation in New York City. He studied theology and scripture at DePaul University.
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