A parent's wildest dream

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Why blame Mom?

Historically it's been mothers who are blamed when children are born with disabilities. In earlier times we were thought to have sinned, while today the belief that women can prevent birth defects, by what we do or don't do during pregnancy, is rampant. And so is its unfortunate corollary: that women who give birth to a child with a disability caused it.

Public health messages that suggest mothers can prevent most defects by taking care of themselves during pregnancy abound.

According to the U.S Department of Health and Human Services website, a healthy baby is the outcome of these five steps:

Five Ways To Have A Healthy Pregnancy and Baby

1. See a doctor or other health-care provider from the start of your pregnancy.

2. Don't drink alcohol, smoke cigarettes or take drugs.

3. Eat healthy foods, including fruits, vegetables, low-fat milk, eggs, cheese and grains.

4. Take good care of your health and exercise sensibly.

5. Have your baby checked by a doctor or health-care provider right after birth and throughout childhood.

More current information (including the importance of folic acid and risks associated with obesity and diabetes) is listed at the Centers for Disease Prevention and Control. 

Yet we know from the March of Dimes that the cause of most birth defects—up to 70 per cent—is unknown. It follows that in most cases a woman can't control whether her baby is born with or without a disability (unless she aborts a child diagnosed prenatally). I bet you most mothers of children with disabilities followed the five tips above to the letter. 

So why are we led to believe our baby's health rests solely in our hands?

Consider this Healthy Babies Are Worth The Wait t-shirt I found as part of the Prematurity Campaign on the March of Dimes website.

What is the meaning of this, I thought? Women don't choose to have premature babies because they're impatient. Most preterm labour, in fact, can't be prevented. "Our analysis shows that the current potential for preterm birth prevention is shockingly small," said Dr. Joy Lawn of Save the Children, who led the first multi-country study looking at the causes of premature births and how to reduce them, published in The Lancet last November. So why suggest that women can control premature births?

Apparently the Healthy Babies Are Worth The Wait initiative targets women who consider scheduling a C-section before 39 weeks. "If possible, it's best to stay pregnant for at least 39 weeks," says the article.

This campaign won't touch the rate of premature births, which declined in only three countries of 65 from 1990 to 2010 according to The Lancet study. That's because asking your obstetrician for an early C-section isn't a major contributing factor.

But how will a mom of a preemie with disabilities feel when she reads that t-shirt message? What if a sibling of the child with disability reads the shirt and asks Mom why she didn't wait?

Yesterday I read about a new March of Dimes book called Healthy Mom, Healthy Baby in this New York Times' article: Too Many Pills in Pregnancy.

According to the Amazon description, Healthy Mom, Healthy Baby empowers "mothers-to-be... with more information and positive steps than have ever been available before to ensure both a healthy pregnancy and a healthy, happy newborn."

What?

If most causes of birth defects are unknown, "positive steps" taken in pregnancy can't guarantee a healthy baby.

The book is mentioned in an article in which the American Food and Drug Association estimates that at least 10 percent of birth defects result from medications taken during pregnancy. According to the article, a recent study shows inaccuracies in online information about which drugs are safe, which means women who choose the Internet over a doctor's consult may receive faulty advice.

That's critical information for women, and I can't imagine anyone arguing that we shouldn't carefully weigh the risks and benefits of medication use with informed doctors.

But don't suggest that healthy moms who do all the right things during pregnancy have healthy babies!

Titles like Healthy Mom, Healthy Baby feed this magical thinking. And they reinforce the popular fallacy that mothers of disabled children did something wrong to cause their child's condition.

In a recent piece called Pregnancy and blame on Conversations, an Australian news site, author Kathryn Knight writes about how simplistic public health messages about birth-defect prevention diffuse into the culture. We all know parents who've been been the recipient—at school or on the playground—of judgemental questions like: What went wrong? Didn't you get the test? Why didn't you terminate?

And that line of questioning isn't limited to an uninformed public.

I have a son with a rare genetic condition. The way a researcher described it, when my chromosome 8—let's call it a green ribbon—exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped red-and-green ribbon, a minute piece was left out. That random error at conception caused his disabilities.

Yet to this day (he's 18) I'm asked by health providers for a detailed pregnancy and delivery history. "But the genetic condition occurred at conception," I will implore, as the 20 questions about my pregnancy are trotted out. "It had ALREADY happened!"

A blog in Three To Be's Parent Advocacy Link yesterday had a similar theme: 

"When Maclain was born, I blamed myself very heavily for a long time," writes Brenda Ferland Agnew. "It was my fault that one of my twins had died. I should have known sooner that something was wrong. I should have gotten to the hospital sooner. If I had done things differently both of my babies would have survived, and Maclain wouldn’t have been born so early. I could have prevented his brain damage if I had done something more. I carried this with me everywhere I went, with every move I made. It ate away at me, and kept me awake at night...

"A year and a half after his birth, we received confirmation that Maclain’s brain damage was caused by a condition known as Kernicterus. He was not treated for jaundice, and this was what caused his cerebral palsy and his hearing loss. We had suspected it for a few months, and after a visit to our neurologist, we got a letter that ruled out his brain damage having been a result of any intrauterine insults, or because of the Twin to Twin Transfusion...

"I was so angry that I had been made to feel by all the medical professionals, that my son had disabilites because of something I had done wrong."

We have less control over a myriad of things that can happen to a fetus than books like Healthy Mom, Healthy Baby—or Five Ways To Have a Healthy Baby tip sheets—would have us believe.

Let's speak the truth about how much we don't know about the causes of childhood disability and, more importantly, how to prevent it. Let's tell the truth about how Healthy Mom can just as easily produce Unhealthy Baby, or Healthy Baby with a Disability (because disability is not necessarily synonymous with poor health!).

Every mom wants what's best for her baby. In most cases when congenital problems are found, it's not because of something we "did."

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Why does The NY Times demean disability?

 

Mr. Philip Corbett
Associate Managing Editor for Standards, The New York Times

Feb. 25, 2013

Dear Phil:

I wanted to bring your attention to this headline yesterday:

Don't Call Him Mom, or an Imbecile

Was the writer intending to refer to someone with an intellectual disability?

Would an equally appropriate headline have been:

Don't Call Him Mom, or a Retard

Why not? Both words have the same origins?

I first wrote you about my concerns with routine use of the word “retarded” in your newspaper to describe people with intellectual disabilities on Oct. 9.

On Oct. 26 you wrote: Our health editor and our mental-health reporter both agree that we should give stronger guidance to the newsroom about the use of “retarded.” I will be working with them to draft a new style note.

What happened?

The words retarded and imbecile are not neutral, nor are they the chosen descriptors of people with intellectual disabilities (and your style guide counsels neutral language and respect for preferred group descriptors).

According to The American Psychiatric Association: “Mental retardation is no longer used internationally [as a medical term] or in U.S. federal legislation.” The APA’s proposed name change for its new diagnostic manual in May is intellectual development disorder.

Would you show the same kind of disrespect for more powerful minority groups?

I will be sharing this on the BLOOM blog with our readers who are parents of children with disabilities in 136 countries.

Please let me know when this will be rectified. Thank you, Louise

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'If it's part of me, I learn to love it'

Here's our full interview with Emily!

Emily Chan, 16 (above), has a rare neuromuscular condition that creates general weakness and serious breathing problems. She uses a ventilator and a power wheelchair. At six months, when she was in an acute-care hospital, her parents were given the option of stopping medical treatment.

“They told me I have a choice,” says Peggy Chan. “That I don’t need to keep her. The doctor said they had families who choose to give up their baby because they won’t have any quality of life. I was very mad and I said: ‘Are you crazy? As a mom, you’re not even giving me a chance to try to raise her?’ If I had given her up I would have regretted that decision for the rest of my life.”

Emily lived for six years at Holland Bloorview before her medical condition improved and she was able to move home with her parents. Emily says she likes “all the typical teenager stuff” and wants to go to university to become a child psychologist.

BLOOM: How do you define quality of life?

Emily Chan: It’s living each day to the fullest, being happy. I think everyone deserves to have that chance. The purpose of life is to be happy, to be happy with yourself and what you’ve done and hopefully make a difference somewhere.

BLOOM: What is your life like now?

Emily Chan: I have a great life. I have everything—family, friends, cute guys to look at. Everything is going great in my life. I have pretty good marks at school—an 82 per cent average. I like Facebook and I’m really into (Korean)-pop. I play the guitar and piano and really love doing that. Whenever there’s stress in my life I pick up my guitar and play my worries away. It’s a great stress reliever. I like talking, hanging around, going shopping, going to see movies—all the typical teenager stuff. I love Harry Potter.

BLOOM: What about reading. Do you like those teen romances?

Emily Chan: No, that’s so cliché. I like the deeper, darker stuff. I’m just finishing The Hunger Games.

BLOOM: What are your dreams for the future?

Emily Chan: I want to become a child psychologist. I also want to have a family and drive a Ferrari—don’t we all? But right now I just want to get to university. Living in a hospital for the first six years of my life has given me a broader perspective of things. I got to interact with adults more than the average kid, which made me mature faster. It’s like my brain is 20 when I’m 16. I’ve known a lot of people who had to go through really difficult situations and I’m less quick to judge. I know that even though a person may appear a certain way it’s because of something that’s happened to them in the past. You have to see the person, not just the person they appear to be or how they act. I understand the feeling of being isolated, which will help me understand someone who feels alone for different reasons.

BLOOM: How do you view disability?

Emily Chan: It’s just a part of you. God made you this way for a reason and you have to learn to love yourself. You have to realize that a disability isn’t going to hold you back. My mom always told me that it doesn’t matter how you do something as long as you get it done. If you have a wheelchair it just becomes another part of you. And sometimes you can use it to your advantage—like running over people you hate!

BLOOM: Some kids resist what makes them different.

Emily Chan: You need to embrace it, because you can’t change it. If you want to live a good life you have to be happy and being happy means loving yourself. You do it for the sake of you and your happiness. Everyone has flaws, no one’s perfect. For me it’s my equipment. But I learn to look past it.

BLOOM: How do you see your equipment?

Emily Chan: It’s a part of me, so I learn to love it. If someone rejects my equipment they’re rejecting me because it’s grown on me. If they ask ‘Why do you use that?’ they’re kind of insulting me. I help my mom when she changes my trache and if I need to suction, I’ll do it myself. It makes me feel like I have more control in my life.

BLOOM: What is it like for you to be in a regular high school?

Emily Chan: I feel I’m really lucky because I go to an arts school and there’s a lot of diversity there. They have so many different kinds of people that the students are more accepting. If I went to any other school I think I would be more outstanding, more prominent. Here I’m just part of the diversity.

BLOOM: Did you ever have trouble with other kids at school?

Emily Chan: When I went to my home school for Grade 2, I was the only one in a wheelchair and it was hard. They were always teasing me. For group projects no one wanted to partner with me. These kids had been together since kindergarten and were close knit.

BLOOM: How do you think they viewed your disability?

Emily Chan: Like it was going to hold me back: ‘She’s not normal, she doesn’t fit in with the rest of us, she’s an outcast, she can’t do anything.’

It doesn’t happen much now, but there was a group of girls taunting me at school. When I went past them one said ‘Oh, you almost ran over my foot’ when I was no where near them. I said ‘No, but would you like me to?’ I like to use humour to turn the joke back on people.

BLOOM: Is there advice you’d give kids who struggle to make friends?

Emily Chan: I tried to approach kids and be friends with them but it didn’t work out that great. I did become close to one girl and she stuck by my side. In Grade 7 and 8, I found myself developing a skill of not letting people take advantage of me. I can stand up to people and fight back, instead of being tread upon. Something that helped was there was a class where students with physical disabilities could go at recess or lunch and I became very close to those people. They were friends I could talk to and fall back on, and I think that kept me going. I learned not to let things get to me. To look past a hurtful word and feel sorry for that person because they have to bully someone just to boost their self-esteem.

BLOOM: What advice would you give parents of children with disabilities?

Emily Chan: Don’t give up on your kid—no matter how grim the situation might seem. Always stay positive. You have to put in the time and the effort. Kids need their parents to give them love and support. Nurses and doctors will have sympathy, but it’s not the same as a mother’s hug that gives you that warm feeling. Every kid needs that. What got me out of Holland Bloorview was the constant pushing and love and support of my parents. They got me the treatment and the help I needed to thrive. My mom had a drive to bring out my potential and I think every parent should have that. In my opinion, many parents don’t have that devotion anymore.

BLOOM: Is the condition you have usually progressive?

Emily Chan: I’ve done some research about it and read stuff online about boys who have the diagnosis. It’s rare for a girl to have it. For the boys it’s a progressive condition and it keeps getting worse and worse. I’m really healthy now and I don’t have issues with pain. I think part of it is living at home and not being in a depressing hospital. I have more room to grow and expand on new things and explore what’s out there.

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How do you fill your cup?

By Louise Kinross

Empty and fragile is how I've felt the past couple of days, like a china cup with no hot tea.

Full and empty, fast and slow. They're descriptors for how we feel, but often they're misleading: we may think fast leads to full, to more, to something substantial, when it doesn't, necessarily, at all. Sometimes we're so busy trying to make our cup full that we don't even notice what we're filling ourselves with.

Until I broke my arm three weeks ago, everything was fast. I was in a flurry of activity, at work and home, trying to squeeze more and more into each day. The day I broke my arm was Saturday. Up early, trip to the club, Kumon with the boys, lunch at Mocha Mocha and then a few hours to myself. I felt stressed but I headed to the Eaton's Centre anyway, racing from one end of the mall to the other, floor by floor. I can't say it was fun, but perhaps I felt productive. I did get a sports bra.

When I got out of the subway on the way home I passed my favourite boutique. Even though I was late I dashed in, leaving with a tunic on sale. It was almost 6 and we had tickets for a show at 7. From above, I must have looked a comical figure, rushing down our dangerously steep street in my treadless 'indoor' boots, connecting with ice and then sailing back, feet upended, till my right hand touched ground.

I wouldn't be needing the sports bra anytime soon.

I think I'd mistaken fast for full, as if by doing things quickly you amass more, are more. But more of what? I never thought about the contents.

At first I thought I'd just compensate, be really 'good' at having a broken arm. I'd follow the doctor's orders, take my pain meds, get by at work by typing with my non-dominant hand.

What I wasn't counting on was a lot of pain after the arm was casted.

"Why does my arm hurt so much?" I'd ask D'Arcy. "I'm taking the meds."

As the days turned to weeks it became: "What is wrong with me? What am I doing wrong?"

I didn't like being reminded of my weak spot, my frailty.

And I didn't like thinking about how it must have felt for my disabled son Ben to be in a full body cast two years ago. Then I'd replay the scene of when he refused to get back on the operating table, two weeks after his first hip surgery. The hardware had pulled out of the bone, so he had to have the same operation a second time. He had to be forced, fighting, onto the table, with me saying the most inane things like: "Don't you want your leg to get better?" During the tussle the anesthetist's cold, heavy stethoscope swung forward from her neck and hit him, hard, in the head.

At work I couldn't continue to produce at my pre-fall rate. I went to visit my occupational health nurse. We talked about how my workload was going to change, how I'd have to slow some things down, put others on hold. She suggested that my expectations might be the biggest barrier, noting that the first thing I told her when we met was that I was a speed typist. "Louise, " she said gently. "One of your hands is immobilized."

I'd been operating in fast mode, but now I was SLOW, SLOW, SLOW.

I decided to take a week off, to rest up and give myself time to heal. I slept a lot and listened to the radio. I couldn't drive but I ventured out once a day, hobbling around with my eyes peeled for ice. I waited for the return of family members and their helping hands.

"What happens if you're hurt and you don't have anyone to look after you?" I asked D'Arcy, imagining how I'd manage (not) on my own. "What if this happened and you're caring for a child that needs to be carried everywhere?"

You adapt, he said.

Yes, I thought. I had learned some one-handed dressing and cellphone tricks and occasionally my teeth came in useful as a second hand. But I still needed an arm up our outside stairs, my seatbelt fastened and someone to open my child-proof medicine bottle (not to mention shopping, cooking and household chores).

We do adapt, I thought, but not alone. What about people who were on their own?

A friend suggested that perhaps there was a lesson to be found in my week off.

I did notice how happy Ben was in the mornings—now that I only had to worry about getting him out the door. Did it have anything to do with my less frenzied state? Or was he always like that and I was too busy to see?

There were tragedies during the week, some far away like the murder charges against Olympian Oscar Pistorius, others closer to home.

Yesterday I read a presentation on black history month from one of my kids' schools. "If you think you can do it, and if you think you can't do it, you're right," was a quote that featured prominently. I found this little homily hard to stomach after the grisly slides of black slaves with monstrous welts on their backs.

It reminded me of the "Nothing is impossible if you try hard enough" mumbo jumbo I was brought up with, those empty platitudes I actually believed in before I had my son with disabilities.

I began to see how what we really need, what we're often running low on, are courage and compassion, for ourselves and others. And how nurturing those things in ourselves has nothing to do with fast or slow.

That ache in our chest that makes us feel we've lost a part of who we are—that leads us to seek out more and more things, faster and faster, to try to make something bigger of ourselves, to try to prove we're valuable—is the very sign that we need to stop and know we're enough. To do that we have to let in the intangibles of gentleness and kindness.

But often we look to others who care about us for this reminder.

"Tell me that I am myself," implores one of the key characters in Ramona Ausubel's novel No One Is Here But All Of Us. "Tell me that I still am."

If I learned anything this last week, it's a reworking of that quote about the power of positive thinking.

"If you think you can do it ALONE, you're WRONG," is my rewrite. "We need each other."

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Time to let the 'special-needs' ball drop

Most families of young children are accomplished jugglers. We juggle work, school, childcare, doctors' appointments, housework, as well as social and family obligations. Most families struggle to get through the day, to fall asleep at night only to wake up and do it all again the next morning.

My family is no exception. Except, we have two children with two different special needs and a slew of specialists that help us out. So we juggle many different appointments in our family as well.

We regularly see a physiotherapist, occupational therapist, speech and language pathologist as well as a couple of pediatricians. We are also regularly referred to different specialists, go for all kinds of testing at different hospitals and have a couple of regular appointments at different medical clinics.

Don’t forget the many appointments for illness and injury! They really do add up. At one point I was in the emergency room with one child or another on a biweekly basis. During one exceptionally busy period we were at three different hospitals in a 24-hour-period. We are busy.

I know there are families who do much more, and there are families who do less. My point is that families of children with special needs are very busy.

A visit at any medical clinic waiting room finds parents on their phones with work, trying to stay connected with the workplace while taking care of their children. It’s a juggling act. And sometimes the balls are dropped.

Appointments are forgotten or missed. The stuff of life – laundry, dishes, meals – pile up waiting to be done. There is only so much any one person can do, and we all know about the straw that broke the camel’s back.

I know my family has reached burn-out on a few occasions. We were trying to do too much in too little time. Burn-out means we are all exhausted and miserable; stressed and anxious, waiting for the next appointment.

I remember one warm spring day when I refused to let my kids play in a park while we ate our lunch because we had to drive to another appointment soon. The kids sat in the minivan with the windows down, eating take-out and strapped in their car seats. I was stressed, worried about making it to the next appointment on time. It was something else to check off on my to-do list. I wasn’t thinking about who the appointment was for or why it was critical.

And now I can’t remember what the appointment was for, or what the result was. But I do remember that day, and how my four-year-old son wanted to go walk on the grass under some trees.

I learned from that day. That appointment was for my son, and what's important is that he experiences the many things in life beyond a clinic’s walls – sunshine, green grass, spring flowers and those tall trees. There is more to life than medical appointments. I need to remember this.

Next time, I'll cancel at the last minute and say we're all sick. Unprofessional, yes, but essential for life.

Angela is a special-education teacher and special-needs parent who blogs at Half past normal.

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Do doctors grieve? This study says yes

Grief is natural, but no one talks about the loss doctors feel when their patients die, according to a qualitative study of 20 Canadian oncologists published in Archives of Internal Medicine.

Because emotion is considered a weakness in medicine, doctors hide their feelings, researchers found. This harms them personally and has negative impacts on patient care.

BLOOM wondered if rehab professionals might have similar emotions when working with families—particularly those whose children acquire disability through trauma. We interviewed study lead Dr. Leeat Granek, a health psychologist who is an assistant professor at Ben Gurion University of the Negev in Israel.

BLOOM: What were the key results of your study?

Leeat Granek: In medical culture, emotion in general is not acceptable. Physicians are supposed to be objective and scientific and to make their decisions based on science. Grief is considered a weakness. There wasn’t much space in oncology for physicians to talk about grief or loss.

In palliative care, nurses and doctors have debriefing and support groups, but there was nothing like that in oncology. Doctors said they would feel uncomfortable talking to another oncologist about their feelings of grief. One of the reasons I wanted to do this study was I thought it was very odd in a specialty so defined by loss that there would be no acknowledgement of it, or grief training, or forums to talk about it.

One thing the doctors did talk about was the focus on cure. Everything they’re trained in, and trying to do, is working towards cure. So when a patient dies, it’s considered a personal and professional failure. It’s the part of the job you don’t want to talk about.

BLOOM: How does the inability to share grief affect doctors?

Leeat Granek: There was a personal spillover. They were more agitated or irritated at home and it affected their quality of life and enjoyment of the job. Impatience, emotional exhaustion and burnout were also talked about.

BLOOM: How does unacknowledged grief affect the way doctors care for patients?

Leeat Granek: One of the things they talked about and felt sadly about was withdrawing from their patients as they got closer to the end of life. A big impact was being reluctant to stay present during the patient’s death, not wanting to walk over to the palliative care unit and see the patient as they got closer to dying. They may have known that patient and family for 20 years. They’re really connected and they know they’re going to feel sad. If you view death as a personal failure and you weren’t able to cure this patient, that’s difficult to deal with.

Withdrawing is a practical and a coping strategy. But one thing physicians really wanted to know was what patients and families wanted from them at end of life, what would be helpful. Institutions and medical schools and hospitals aren’t talking about this. Physicians aren’t talking to other physicians about this. Patients aren’t talking to physicians about this. Everyone is curious about what the other side wants but there’s a lot of silence around the issue. Of course there isn’t one thing that all patients will want, especially in a place like Canada that is culturally diverse.

BLOOM: What kind of supports can bring grief out of the closet for physicians?

Leeat Granek: Acknowledging that this is part of the job, forums in which they can share experiences, having a half day or weekly or biweekly meetings where people get together to talk about patient loss. One thing we found in our study was that oncologists want to meet with other oncologists in the same field rather than meeting with a mixed group of health professionals. They want to talk to others—some more senior and some more junior—and know the other person will understand them.

The other part is vacations, sabbaticals and psychosocial support. These physicians are dealing with chronic patient loss and never get a break from it. They may have as many as four patient losses a week. This is an institutional problem—it’s not the individual physician’s burden to cope with. Hospitals need to set up the structure to support physicians so they don’t get depleted.

I gave four grand rounds at Toronto hospitals and the feedback was that this was the first time anyone had heard anything on the topic. At one of the grand rounds a respected, senior oncologist at the end of the talk jokingly said: ‘Can we make appointments to come and see you?’ Everyone laughed, but that doctor gave
permission for others in the room to start talking and that’s when the discussion opened up.

BLOOM: In children’s rehab we aren’t dealing as often with death, but with congenital disability or disability acquired through trauma or illness. Families go through a grief process. Do you think rehab professionals experience loss they feel the need to push down?  

Leeat Granek: I definitely think grief and loss is a part of any medical professional’s work where you’re experiencing these types of incredible losses. If there’s a loss of functioning of who the child was before and the professional is trying to improve the situation and isn’t able to do that, that might lead to grief.

It’s also difficult for parents because there’s still a stigma about grieving in our culture. We’re not very good at it. People are encouraged to move on quickly from losses. If your child has been in an accident, people are supportive up front, telling you it’s going to be okay, you’re going to get rehab, keep going, but then that tapers off. Within a month or two the support disappears and many people don’t want to hear about it. There isn’t a lot of understanding about how loss will continue along the way as this child grows and they’re not doing developmentally what they would have been doing. And most people don’t understand that it’s not about curing loss or grief—it’s about sitting with it.

To live full lives we have to be able to grieve. It’s so simple, but we have such a hard time with it. I often like to say I’m an activist for grief, which is a funny thing to take on, but I believe what I am is an activist for love. They come together. Our ability to acknowledge grief and loss is our ability to experienc the full spectrum of human emotions and to connect with other people. That comes from our vulnerability, not from our places of strength. When we’re not allowed to grieve, it makes things so much harder for people whose child has gone through a trauma or who have a child with a disability.

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