by
Rozann Grunig
I wonder what my life would be like if I had conceived a month earlier or a month later. A different
egg and a different sperm. A different child and a different life for all of us. What kind of mother am
I to even think such a thing? I am a mother who loves her son, but wishes his life was easier. I am also
a woman who needs to move on to another phase of her life, but is unable to while my son is
unwilling to care for himself.
Eric is my adult son. He carries a dual diagnosis of Asperger’s syndrome, which is a social affective
disorder, and bi-polar disorder. He’s a very intelligent young man. He is fluent in French and taught
himself Russian. He is smart enough to know what he is missing in his life. Sometimes his frustration
shows itself in unacceptable ways. He is angry. He is resistant. He refuses to take his medications.
He wants to be independent, but refuses to take any responsibility for taking care of himself.
I have more questions than answers. Over the years, I’ve forced these questions into the darkest
corner of my mind. Recently however, they’ve been pushing their way to the forefront. I seek
answers by finally being able to ask them aloud.
Where does my responsibility as a mother end to an adult child that refuses to help himself? Has
everything I’ve done that I thought was right been exactly the opposite of what would have helped
him?
When do I get to live my life, and not be a subtext to his? When does the guilt end for asking these
questions?
As a parent of a disabled child, the one question I’ve asked from the moment he was diagnosed was,
“What did I do that caused this”? This is not part of the baggage that parents of “normal” children
carry around. My baggage has a hole in the bottom. No matter how many questions I put in, it is
never full. When I look inside, I see unspoken accusations, the eyes of other women who are grateful
that he is not their child; and I see my confidence sliding out.
I have been forced to scrutinize everything I did during my pregnancy. Every doctor and therapist I
saw for my son asked, “Did you drink alcohol, smoke cigarettes, take drugs? What was your labor
like?” So many questions seeking to find fault, to pass judgment. The questions other people ask are
layered inside my suitcase.
At the time we learned Eric had Asperger’s, the diagnosis had been added to the psychiatric manual a
year earlier. It was not widely understood. There was no long-term prognosis, no standard treatment
modalities, and no insurance coverage. My husband and I were largely on our own. We read
whatever we could find, and bought extra copies to give to his teachers. While some of his classmates
demanded extra attention, Eric quietly stayed in the background. He never caused problems; his
teachers loved him. Why didn’t they notice his depression? Why didn’t I ask more questions? How
did we all miss what was happening to him?
I tried to boost his self esteem. I told him he learned differently than other kids, that he saw the world
in his own way, but it wasn’t wrong. He was special. I didn’t know he would incorporate being
“special” into an excuse. Because he was special, he didn’t have to live like everyone else. He could
be tactless and rude. He would say whatever came to mind, lacking the empathy to see the effect of
his words. He was intellectually superior. His French is fluent, but if I tried to speak it, he ridiculed
my accent. People didn’t understand him and it was their fault, not his. What should I have told him
to keep him whole and still keep him grounded in reality? Is there room in my baggage for this
question?
When Eric was 23, he was diagnosed with bi-polar disorder. He had always been depressed, but now
he began having psychotic breaks. He was hospitalized several times. His therapists asked if he was
suicidal. He told them what he thought they wanted to hear. They gave him the wrong drugs. He
was almost catatonic; he slept all day. His intellect was dulled. He refused to leave the house for
almost a year. Why didn’t they take the time to treat him correctly? There is room in the side pocket
of my baggage for all of the questions his therapists did not ask.
Trying to understand what Eric is capable of versus how much to do for him has been a constant
struggle. Finding resources on techniques that work on Asperger’s kids was difficult when he was
younger. Most mothers rely on their friends and family for advice. I’ve learned to be careful who I
talk to and what I say. I’ve been told it could be worse; there are others so much worse off than my
son. Once when I turned to a rabbi for advice, he asked me, “What are you complaining about? At
least your son can walk.” How do I respond to that? How does another person's suffering make Eric’s
life any easier? More questions to add to my baggage.
I’ve worked since I was 15-years old. I put myself through college. My husband and I live
comfortably but not extravagantly. We are solid middle-class, working towards retirement and a
time when we can enjoy some leisure time. My plans did not include an adult child living with us; a
roommate that has to be monitored for medication compliance; a call in the middle of the night telling
us he is in the county psych unit, again. Is it selfish to want the life I’ve worked so hard for? Do my
hopes and dreams for the future just wither away if I don’t use them?
If Eric was trying, my questions would certainly be different. But he isn’t. He currently lives in a
residential treatment center for adults with psychiatric problems. They tell us he functions at a very
high level in all situations, except around us. When he is around his father and me, he is too “sick” to
work, go to school or interact with other people. His physical demeanor actually changes; he stoops
his shoulders and his eyelids droop, creating the appearance of frailty. Why doesn’t he believe we will
still love him if he is healthy and independent?
I’ve reduced the amount of time I spend with Eric. I want him to find the determination within
himself to make the hard choices it takes to live in this world. Does “tough love” work with a disabled
person? How much of his behavior can he control versus how much of his behavior does he use to
control me?
There are too many questions for the amount of baggage I can carry. I want to put my bags down
and walk away. But I don’t. For many years, I believed he would learn to live in this world. When I
realized that was not likely to happen, it was almost more than I could take. To cope, I had to change
my expectations. Instead of trying to manage his illness, I came to understand I can only control how
I respond to him. I am cautiously optimistic for his future, but hope is another matter.
There may come a day when Eric will become independent, either through a new medication,
successful therapy or some inner resource he will find. When that day arrives, I will open my suitcase
and throw all of its contents into the wind.
QME is her first published work. Ms. Grunig shares her life with her husband, two sons, a border collie, a cattle dog
and an eccentric cat. She finds writing and working in her half-acre garden very therapeutic.
