A dad asks: 'Did I do anything wrong?'

By Louise Kinross

Samuel Cheng (above left) is a decision support analyst at Holland Bloorview. He spoke at a Schwartz Rounds recently about what it’s like to have his professional and personal life intersect, as his son Timothy (right) has disabilities. I wasn’t able to attend the event, but many colleagues told me they were profoundly moved by Samuel’s story, so I interviewed him.

BLOOM: Tell us a bit about Timothy.

Samuel Cheng: He’s 14 and he has a genetic disorder and requires 24-7 care. He can’t walk, but he moves, he can stand. He can crawl and he needs to be watched to be safe, which is demanding. He has his favourite games and favourite videos. He doesn’t speak, but he points and gestures and people close to him know what he wants.

He was diagnosed with autism and he has seizures and a heart problem. His health is fragile. He loves music. Whenever he hears music he will be jumping around and smiling a lot and laughing. He likes to press sound-and-effect toys. He’s come to Holland Bloorview on Sundays for respite and he likes to go on the elevator and press the up and down buttons. He goes to a special class in an integrated school.

BLOOM: Does he like school?

Samuel Cheng: I think he likes it, but we don’t really know because we can’t go inside his world to understand what he’s thinking. I know in the morning we see him excited and happy to go to school and when he comes home we see he’s even more excited!

BLOOM: Does he have a close relationship with anyone?

Samuel Cheng: Only his mother. There is something special there. After his shower everyday when he sees his mother he has endless things to talk to her about. He speaks with her, face to face and with facial expression, making sounds. It’s like he’s trying to tell her whatever story he has. He’s never talked to me like that. I feel bad sometimes because I look at him and this is my son, but I feel remote with him. I’m only someone to be in charge. It seems to me that to him I am only someone, ‘anyone.’ This is a really bad feeling.

BLOOM: Do you think it’s possible that he knows that you are someone important to him, even if he can’t tell you that?

Samuel Cheng: Maybe, but I don’t know. There are lots of unanswered questions.

BLOOM: You mentioned you have another son.

Samuel Cheng: Yes, Aidan is nine years old.

BLOOM: What kind of relationship do Aidan and Timothy have?

Samuel Cheng: Aidan knows he has a brother with special needs but they’re so distinct in what they enjoy doing and they don’t communicate a lot. I know that Aidan loves Timothy so much. Sometimes if there’s a dangerous situation, Aidan will yell and run to us to let us know Timothy needs help. Whenever we ask Aidan to help with Timothy’s care, he loves to help.

BLOOM: When is Timothy most happy?

Samuel Cheng: He enjoys being outside in this weather, but lots of times we feel discouraged because it’s not easy to bring a wheelchair to push him in and people in the community look at you differently. So he enjoys being out, but sometimes we are discouraged. I feel like we live in a subculture or a subgroup that is outside the ‘normal.’

BLOOM: I understand that feeling. Have you connected with any families who have children with disabilities?

Samuel Cheng: No, we don’t have friends within the disability community. I always feel that I’m different. I have no social life and for many years I just go home and come here to work.

BLOOM: What is the greatest challenge of raising Timothy?

Samuel Cheng: Everyday facing uncertainty in terms of his health. This morning he had quite a severe seizure that lasted a few minutes. I don’t feel there’s anything I can do about it. The first time he had a seizure 13 years ago, I rushed to him and was so worried. It seems that I’ve lost that emotion over the years. Because the situation keeps recurring, I become less emotional. I feel guilty, and I’m not happy that I don’t feel more emotion. Inside I feel I owe it to him. He’s my child and he’s fragile.

BLOOM: It sounds like you're very hard on yourself. I think parents of children with disabilities often feel inadequate because they can’t change the situation in the way they would hope. So we always feel we are coming up short.

Samuel Cheng: Yes, I feel that I’m not doing enough. Sometimes I come here for appointments and the therapists say ‘you need to do this and you need to do that’ and I’ll say ‘yea, yea, yea,’ but actually, I don’t fully follow the instructions they’re giving me. Because it’s become a routine, and I don’t believe it’s something that will help anyways.

BLOOM: I can imagine that when your child has so many needs, you could be working with him 24 hours a day and you still couldn't fit everything in.

Samuel Cheng: Timothy has such a long list of problems. He has everything! If he only had one of these problems, it would be big. For example, if he only had seizures. Or if he only couldn’t talk. Or if he only couldn’t walk. Or if he only had a heart problem.

Sometimes I think about what I would say if a wizard told me he could take away one of his diagnoses. But the list is so long I don’t know which one to pick. Can I take five? Can I take 10?

I’m not talking about small things you can do something about. I’m talking about life and death situations. There’s a huge uncertainty that drags all the energy out of you. All of the uncertainty and the emotion, everything is linked together like a web. You pull on one thread and the whole thing collapses. It’s too much.

Now, if we are given one more diagnosis for Timothy, I’ll say ‘just add it to the list.’ I don’t know where to go. Every day I tell myself and I tell my family, my wife: ‘I’m here. I’ll try my best to carry through one day.’

BLOOM: Did you have experience with disability before Timothy was born?

Samuel Cheng: No, I had no experience. That’s why it was really a shock. Through this whole journey, every step you see something you’ve never seen before, but it’s not good. And then sometimes you ask yourself: ‘Did I do anything wrong?’

BLOOM: You ask yourself why this happened to your child?

Samuel Cheng: I’m not complaining. I just feel guilty that maybe I did something. I feel that I was so self-centred. From the beginning I wanted to go to university, I wanted to get good marks. I wanted to graduate and find a job and a lady and have a family. Everything is a want: 'I want, I want.' And then I come up with this situation. I feel that I did something that is impacting everybody.

BLOOM: I think it's natural for parents to agonize over a reason why this has happened, particularly when their child has many struggles. But I don’t think it's true that you caused Timothy's disabilities, and I don’t think people around you feel that way.

Before my son was born, I believed there was some kind of justice in the world. I thought if you were a good person, mostly good things would happen to you. I couldn't understand how my son was born with a genetic deletion that was a random change at conception.

Since then I’ve come to believe that there’s a lot that's random in the world, and outside my control, and that helps me not feel so guilty about it. Sometimes things just happen, and there is no 'reason.' It can be hard to accept. We want to attach a story to what's happened as a way of feeling like we have control, that there's some kind of order in life.

Samuel Cheng: The bad feeling is not because of how I feel about all of the hard work. It’s because of the people around us who are impacted. I worry about the people around me, that it’s not fair to them.

I feel sorry for Timothy, for my wife, and my family. For example, my mother is 80 and without her we can’t live everyday because she helps to take care of Timothy. And on Saturday and Sunday, when you see people out and so happy because it’s the weekend, somebody has to be home taking care of Timothy. So they can’t be out.

BLOOM: Maybe your mother feels that her contribution to Timothy’s care is very important.

Samuel Cheng: Yes, she loves Timothy very much.

BLOOM: Do you ever have workers come to your house so you can get out for a little while and have a bit of a break?

Samuel Cheng: No, we don’t. And we don’t use the overnight respite at Holland Bloorview. I don’t go on vacation often, but when I do, I will always bring Timothy.

BLOOM: I think it’s very hard if you don’t get breaks from caring for your child when they need you around the clock. I think you need even very short breaks, to help you re-energize.

Samuel Cheng: Yes, it’s like a battery, getting lower and lower.

BLOOM: What do you like about your job here?

Samuel Cheng: I’m a part of this whole business—disability, healthcare issues. Before I came to work here I’d come for appointments and knew the place, so when I heard they were looking for an analyst, it was the perfect match.

I know what we’re doing here. As a parent I always feel I’m a second set of eyes to look at things. I can look at the system and identify something we can do a little better, and tell my manager or tell the system. Instead of just sitting here, I can do something to make it a little better.

BLOOM: Do you ever talk to other staff who have children with disabilities?

Samuel Cheng: Not really. We are so isolated. We’ve built a wall around us—well, around me. I’m facing it, so I’m here, but with the wall around me.

BLOOM: What was it like to listen to the other staff, who are also parents of children with disabilities, at the Schwartz Rounds?

Samuel Cheng: I feel I related to them. And I feel so sorry for them. I know that people here care, because when they hear my story, they send me notes of encouragement. They may not be able to do much to help, but at least they care.

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The blame game

By Louise Kinross

This morning I woke up with a sense of dread. My chest felt like an aching black bruise.

I'd read this piece in The New York Times Magazine about pregnant women and anti-depressants last night. 

Somewhere between my reading and the hours I'd spent asleep a thought had taken root in my mind: Maybe I caused my son's genetic condition. And now I was gripped with terror.

I had to get up and reread this piece I wrote a few years ago, about how parents tend to fall down a rabbit hole of "why" when their child is born with a disability. And how we're determined to find a storyline, or cause and effect, that starts with something we as parents did wrong, even if it doesn't make sense.

I had to remind myself that my son's genetic condition happened at conception, not because I was on a low dose of Prozac while pregnant (to keep severe, recurrent depression at bay).

Thankfully, over the years I'd had contact with Dan Wells, a University of Houston scientist who'd isolated one of the genes affected in Ben's syndrome, and he'd explained how the random deletion occurred. 

The most likely reason was something called "unequal crossing over." When my husband's chromosome eight exchanged parts with my chromosome eight, to ensure more genetic diversity, a tiny piece was left out. He likened it to a green ribbon and a yellow ribbon binding together to become a 150-inch green and yellow ribbon. But two inches were cut out in the middle and the ends reattached. Chromosome eight has about 150 million genetic letters and my son's is missing about two million. "There are some places in the genome where you could cut out two million letters and it would have an almost unnoticeable effect," he told me.

The cause of my son's genetic condition, Dan said, was random and couldn't be linked to an identifiable cause. And then I read a study showing that the error was more likely to occur in the sperm than the egg, anyway.

"There's nothing you could do to reduce unequal crossing over," Dan said. 

So how is it that 21 years later I could be hit with such a massive sense of guilt? 

We know from the March of Dimes that the cause of up to 70 per cent of birth defects is unknown. It follows that in most cases a woman can't control whether her baby is born with a disability. But this isn't a storyline we're comfortable with as a culture.

This paragraph from Andrew Solomon's New York Time piece resonated: "We have defined pregnancy as a universal Lent in which a thousand talismanic things must be forsaken for the health of the developing child. The conventional wisdom in the United States is that women should not sip half a glass of wine during pregnancy, or do the wrong exercise or take prescription medication of any kind. Some women find these relinquishments reassuring; they support an illusion that the mother's behaviour can guarantee a healthy baby."

And the corollary is that if your child is born with a disability, you did something wrong. 

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Grief: an unlikely friend

This post is dedicated to Erika at The Flight of our Hummingbird.

When my son with disabilities was younger, I often felt a failure because I still grieved for him. Why did I feel sad, mad, guilty and anxious – when I adored my son and he brought me such delight?

Here are some of the reasons.

I couldn’t give him a clean slate in life. When I shared the joyous news of his arrival, I had to mention his suspected genetic condition, and worry about how people would react. I felt guilty that I had done something to cause his condition. I couldn’t fathom why this had happened to my son, to me, to my husband. I was terrorized when Ben choked on solids – leading to frantic 911 calls and ambulances – yet was told (incorrectly) they were isolated incidents. From age one to four he had severe, recurrent ear infections that couldn’t be treated with eight sets of tubes or antibiotics, and caused excruciating pain. He lost words, never to speak them again. The list of diagnoses he collected over the years felt like cruel blows: failure to thrive, uncoordinated swallow, dwarfism, submucous cleft palate, inability to speak, hearing loss that wasn’t properly diagnosed till age five – despite repeated hearing tests! – fine-motor problems that meant he would never write, early-onset arthritis and pain, bony growths that would have to be removed surgically and mental retardation. Whenever we were adjusting to one diagnosis, another was walloped on.

Physical and speech therapy were gruelling and didn’t result in the gains we had hoped. Ben was not the poster child for early intervention. If success was measured by his ability to reach rehab goals, I had never been so unsuccessful in my life.

Surgeries that were explained as simple, routine, didn’t go as planned (an epidural that didn’t ‘work,’ a testicle lost to infection, plastic surgery to reconstruct his ears that so failed that the resident who saw us post-surgery asked: ‘So you’re here about having his ears fixed?’).

Heartless professionals, like the surgeon who walked into a room full of residents being charmed by a babbling Ben and demanded angrily: “What is WRONG with his head?” Or the perky pediatric dentist who asked me in a pitiful voice, as I held my precious 18-month old son, in whom I was so proud: “Will he E-V-E-R walk?” “Is he short for his age?” “Is he mentally retarded? Oh, I guess you wouldn’t know that yet anyway!”

By the time Ben was a preschooler I felt I should be “over” my painful feelings and was petrified that I might never come to a place of acceptance. I sensed friends who hadn’t experienced disability in their children were tired of hearing me express my angst. Physicians said things like: “You need to face reality” – as if I could choose acceptance the way one chooses a shirt to wear that day.

I recently read an article by psychologist Ken Moses that helped me understand that the painful feelings I experienced served a purpose, and I now see them as a natural and healthy part of parenting a child with disabilities.

Dr. Moses explains how different aspects of grief – denial, anxiety, fear, guilt, depression and anger – allow us to cope in the early days, mobilize resources and support, and over the long-term to self-reflect, grapple with and redefine our values, priorities and beliefs, and change and grow as people.

I wanted to interview Dr. Moses, but couldn't locate him. In addition to being a psychologist, when his article was published in 1987 he had a child with disabilities and worked with groups of mothers of children with special needs.

Here are some relevant points I pulled.

In working with mothers he notes: “It became evident that these people were manifesting a grieving process…The impairment, not the child, irreversibly spoils a parents’ fundamental, heartfelt yearning. Disability shatters the dreams, fantasies, illusions and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Recovering from such a loss depends on one’s ability to separate from the lost dream, and to generate new, more attainable dreams…Each feeling state, no matter how negative, serves a specific and helpful function.”

Dr. Moses says grief emotions provide the context for self-examination that can lead to positive change. There’s no recipe for the order in which we experience them, he says, and no “right” way to grieve.

He argues that “the concept of acceptance” as an end-product for parents “is totally unfounded. In almost 20 years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it.”

Here are some of the positive uses Dr. Moses sites for the different emotional states of grieving:

Denial: “Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.”

Anxiety: “To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values and beliefs, as well as altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to make these changes...Anxiety is the inner source of the need to act.

Fear: Fear is a warning that alarms the person to the seriousness of the internal changes that are demanded…The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult. Significant losses produce a profound sense of abandonment and vulnerability…Fear is the medium that encourages the struggle to reattach, to love again in the face of loss.”

Guilt: “Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child’s handicap. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child’s impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child’s impairment is punishment for a past inappropriate thought, feeling or action. Lastly, guilt can be expressed through the parent’s belief that good things happen to good people…Because parents have an impaired child, they must be bad people...How can such painful explanations of tragedy be useful?...Simply by being explanations. Guilt “explains” the unexplainable. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.”

Depression: “Depression is part of normal, necessary and growth-ful grieving. As we mature, we develop and modify our definitions of the following words: competence, capability, value and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are okay or not. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can’t use the measures of her peers, like having a daughter graduate from college…What is the worth of a father who cannot 'fix' what is broken in his impaired son? A parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopeless) and unable to believe that their lives are touched by good luck (hapless). Depression is the medium that helps parents come to new definitions of what it takes to be competent, capable, valuable and strong people, even though their child has impairments they cannot cure.”

Anger: “Parents feel anger at the harm done to their child and the shattering of their dreams…One’s internal sense of justice is severely challenged. As events occur that violate one’s sense of justice, the outrage must be expressed. Those expressions help to redefine one’s concepts of fairness and justice…and develop new beliefs...that make the world a tolerable place to live, even though terrible losses can occur.”

Dr. Moses says that expressing grief emotions deeply and fully with other parents and professionals enables parents to develop new values, priorities and beliefs that promote growth and resilience.

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