After 32 years as a teacher-librarian, Shelley Neal’s life has come first circle.
“When I was a little girl in public school I remember being in Mrs. Harper’s library and reaching for a book on the shelf called Mine for Keeps,” Shelley says. “It’s about a beautiful young girl with cerebral palsy and it made me dream of being a special-education teacher.”
After seven years teaching at the Bloorview School authority, Shelley returned last year to teach in her childhood school library—the same one where she first read about a child with a disability.
This year she received the 2015 Prime Minister’s Award for Teaching Excellence for her work with students here from junior kindergarten to Grade 12, both in the class and the library. Shelley is married to Dr. Peter Rumney, physician director of Holland Bloorview’s Rehabilitation and Complex Continuing Care.
BLOOM: Why did you decide to work as a teacher-librarian with children with disabilities?
Shelley Neal: Because I love children and I love books. I want them to embrace each other and, in so doing, create a knowledge base that gives students more options in life. My love is for children and how I can engage and bring them into knowledge through books and text and literature, and, in that knowledge, create for them a freedom to think.
It’s almost a selfish thing to be in a relationship with children with different disabilities, because it’s so rich. As you bring out their giftedness, they’re bringing out your giftedness. It’s a real cycle, and out of that comes an incredible journey of relationship that empowers both people.
BLOOM: How did you work with the students in our school?
Shelley Neal: It was the greatest gig ever. First of all you have books, and books are a portal into different worlds and different thoughts, and then you have children—not children with disabilities, I just saw them as my kids. My question was ‘how do I connect these two worlds—the world of literature and books and thoughts—with children who are questioning and wondering? For the younger ones that was easy: by reading and singing and poetry and then saying: ‘I wonder, what do you wonder?’
For the older students I used text to connect them to the world and see their role and passion in the world. It doesn’t matter about disability because they are a whole person right the way they are. They still had that wonderment and we’d use the library, virtual or real, to engage them in discovering.
The middle school fiction is incredibly rich with universal themes of connection and hardship. I had children who were really hurting, coming through surgery and dealing with pain and conflict and all of that regular kid stuff like relationships. I needed to use text to create a genre to have a dialogue about that.
And then I had to figure out what to do with the reluctant guys who don’t want to read. I would use graphic novels to entice them into the text in a way that was fun and that they could glean information that was useful to their life.
One of the ways our kids learn is visually, so I also used TED Talks. One of the best was about a woman from New Orleans who painted one side of an abandoned house with chalkboard paint and wrote ‘Before I die, I want to…’ Then she left chalk there for people to share their hopes. I watched this talk with our high school children and they decided to create their own little chalk boards that they kept in the school, and that anyone could write on. I explained that they had to be sensitive because we have children who are dying with cancer, so, is there another saying we could use? They came up with ‘In my life I wish…’ I was able to get the raw materials for them and poor Peter helped them build this. Most people see him as a doctor, but I see him as a carpenter.
BLOOM: What kind of things did people write on the boards?
Shelley Neal: To sing opera on a stage, to learn to walk again, to go back to school to be with my friends. You saw some of the hurt and coming to new terms with what their body can do. But you also saw things like ‘to study about whales.’
BLOOM: What kind of changes did you see in the students you worked with?
Shelley Neal: It’s growth—growth in their understanding that they have abilities, and they have a brain to think, and learning how to connect them to deepen their understanding and knowledge. For beginning ones it’s literacy. In grades 1 to 6 they learn how to create a good question in their wonderment and to develop research skills. The older ones take those reading skills to a deeper level to empower them to read more complex text that brings up ideas. BLOOM: What was the greatest challenge?
Shelley Neal: It was looking at each child’s ability and how to make access to information for them. So if I had a child with cerebral palsy who couldn’t hold a book, how do I allow them to access text? An incredible volunteer scanned all of our pattern books into this software called Clicker, so kids could access it through switch technology—with a click or the hummer switch or a head switch or eye gaze.
The other barrier was kids who hadn’t been successful in school. They hated reading and hated the library. I had to engage and empower them to develop a love of learning and show them reading is a skill that would help them. I used graphic novels and good Ted Talks as ways of making information accessible. Then we got into WordQ and SpeakQ, which allow a student to hear and read along with text that is too hard for them to read, but the thoughts are important because they can think really well.
BLOOM: Did you ever get frustrated because you weren’t able to find a way for some students to communicate?
Shelley Neal: The staff came together to learn what the child’s language is and how they communicate—whether a smile, an eye gaze, a motion of a hand or finger. The biggest thing for me was learning how to make my questions simple, so through a ‘yes’ or ‘no’ response, I could start to see what was going on in the child’s world.
When I was frustrated I went back to the other disciplines and said ‘here.’ That’s the richness of Holland Bloorview. A whole team is there to enable this child. So the occupational and physical therapists would problem solve on how to position a child correctly or how to make a switch that works best and which part of the body has most consistency for hitting it. This award is a representation of a team, not just me. BLOOM: What was most rewarding? Shelley Neal: The greatest joy of a teacher-librarian, no matter what ability the child has, is to have them sit on your lap and engage in a story with you. That is the magic of library. When technology is too cumbersome or slow, let’s share a text together and read and question and think. BLOOM: Have your thoughts about disability changed over the years?
Shelley Neal: Yes. I went from being a ‘goody two shoes’ who wanted to learn how to help people—where it’s all about you—to a deeper understanding of the power and resilience in the children. They are whole and capable, and my job is not to make it better. My job is to come alongside and learn with them and be honoured with the journey. I learned that these are incredibly powerful, amazingly resilient people—whether they were in junior kindergarten or Grade 12—and they have a lot to teach me about life. I need to stop and listen.
BLOOM: What advice would you give parents?
Shelley Neal: To surround yourself with an incredible team, and that’s not just the professionals, but other parents of children with disabilities. Love yourself, care for yourself, and be the strongest advocate ever. This is a tiring, long journey and you need to make sure to feed yourself.
With Debbie Sutherland, one of my Bloorview school colleagues, we birthed a respite program as a way of honouring and valuing the parents. They think it’s for the kids, but it’s for the parents to reconnect for four hours, to build themselves up. And now they’re connecting with other parents of kids with disabilities to create a valuable team. BLOOM: What is next for you?
Shelley Neal: Last year at my new school we brought in whacks of technology and this year I want to build capacity with other staff members so it becomes second nature to them. The reason for my secondment to the Bloorview school was to build a skill set that I could take back to the board. In addition to technology, I bring back a deeper understanding of inclusion.
I’ll continue on with our respite program and then I’m getting set to retire. My next job is to use my harp, my music, to bring an environment of rest and healing to the sick and the dying.
When my son was born with "unusual features"and a suspected genetic condition, Robert Munsch's Love You Forever popped into my mind.
Singing the lines in the hopes my baby would "feel it"was a way to defy and deflect the doctor who treated him like a piece of broken machinery and trotted out a litany of things that were "wrong"with him at an hour old.
I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.
In Munsch's book, a mother creeps into her son's room after he's asleep and picks him up and sings this song as she rocks him.
She sings it during the "terrible twos," when he flushes her watch down the toilet; she sings it when he's nine and tracks muddied shoes and bad words through the kitchen; she sings it when his loud teen music makes her feel like she lives in a zoo.
Her grown son moves away from home, and even then, she drives to his house at night, a ladder strapped to the top of her car, so she can climb in the window and sing to, and rock, him again.
Eventually, the mother gets old and calls the son to come see her. When he comes over she begins to sing the song, but she can't finish it. She's too sick. So he picks her up and rocks her in the rocking chair while he sings it.
The book captures the beauty and fragility of life and the undying bond between child and parent.
Many years ago Robert Munsch came to Holland Bloorview to interview a client of ours who was the inspiration for his book Zoom, about a girl and her power wheelchair. I got to meet him.
What I didn't know then was that Mr. Munsch had himself experienced loss as a father.
Today I read an article that linked to this description of the book written by Mr. Munsch on his website:
"Love You Forever started as a song.
I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.
I made that up after my wife and I had two babies born dead. The song was my song to my dead babies. For a long time I had it in my head and I couldn’t even sing it because every time I tried to sing it I cried. It was very strange having a song in my head that I couldn’t sing.
For a long time it was just a song but one day, while telling stories at a big theatre at the University of Guelph, it occurred to me that I might be able to make a story around the song.
Out popped Love You Forever, pretty much the way it is in the book."
I was always drawn to Munsch's book, but assumed that the author knew only the typical parenting experience, the normal life cycle in the book where the child grows up healthy and happy through all of the regular stages and ages.
Reading that the narrative in fact emerged from Munsch's love and loss of two children, who were born "still" in 1979 and 1980, is haunting. It was a love letter to the children he never knew.
Munsch sings his version of the song on his website (quite different from the one I sang to my children), and encourages readers to send in the melodies they created.
"Everybody makes up their own song for this book... If you send me your version, either as a tape or an audio file or a MR3 file, I will try to put it up in the LOVE YOU page. If lots of people send me their versions, I will not be able to put them all up, but I would like to hear them even if I can’t put them on the site.
The way I sing it in the story is just MY version. You are supposed to make up your own."
Canadian psychologist Alicia Hendley writes candidly about her son Max’s diagnosis of autism and how it caused “the ground [to shift] under me. Suddenly unable to juggle the roles of therapist, wife and mother of four with anything resembling grace, I stumbled head-first into a major depressive episode, which was quickly followed by a diagnosis of bipolar disorder.”
BLOOM interviewed Alicia to find out how being a psychologist influenced her response to her son's diagnosis. This is the perfect interview for any parent who assumes that every other parent of a kid with a disability has it "all together." BLOOM: The title of your book includes 'from denial to acceptance.' How did you respond when you learned Max had autism?
Alicia Hendley: My initial response was complete denial. The daycare filled out questionnaires on development at 16 and 24 months and both were very clear that Max was behind in every area. As a psychologist I told my husband that the surveys weren’t valid because they were supposed to be parent-completed questionnaires and not based on teacher feedback. ‘They don’t know what they’re talking about,’ I said. ‘He’s just this interesting kid and he’s very sensitive.’
I did one of those questionnaires over in red pen and changed all the answers. It wasn’t until my youngest son started catching up with Max that it became more clear, around Max’s third birthday.
What jumpstarted the need for an evaluation was his absolute need for routine and ritual. We had to do the same route home from daycare and if I changed the route or if I said ‘that’s the fire house’ instead of ‘that’s the fire station’ he’d have a meltdown and take off his shoes and throw them at my head.
When I heard the word ‘autism’ from a child psychologist it was absolutely devastating. It was like I’d known but I didn’t know. And my view of that word is different now, but at the time it was devastating.
BLOOM: In a short span of time Max receives a diagnosis of autism and you receive a diagnosis of severe clinical depression.
Alicia Hendley: During that period I was working full time and I also had two older children and a baby. I counselled students at the University of Waterloo, so I was dealing with people who had their own distress and needed my help and that took a lot of emotional energy.
Max wasn’t in the child services system yet and there were wait lists. Nothing was happening and I didn’t know who to call. I’d leave each morning and he’d be screaming and refusing to put any clothes on and hitting himself. I’d cry driving all the way from Guelph to Waterloo. So my mood was steadily going down.
At first I tried to ignore that I was getting depressed. I wasn’t sleeping and I was losing weight. At lunch time I’d be crying in my office. But it wasn’t until one day when I opened a professional e-mail and realized I couldn’t read it—it was like a different language—that I called the doctor. I couldn’t even speak. They had me come in that day and placed me on leave. The book is about my journey trying to get help for Max at the same time I was trying to get help for myself and trying to be a mom and a wife. Writing was an outlet for me and I initially began journaling.
BLOOM: What was it about Max's autism that contributed to your depression?
Alicia Hendley: I was in denial about Max but I never felt shame about him. I got depressed because I had no idea what to do or how to help him. I don’t worry about whether he’ll go to university or fall in love or not. I worry about any type of future where people could potentially hurt him and that family and close friends wouldn’t be there to buffer that. Will there be people in his life when he’s older that accept him for the person that he becomes? That keeps me up at night thinking about when I’m gone or my husband is gone.
BLOOM: How did being a psychologist influence your response to Max’s diagnosis?
Alicia Hendley: While I didn’t feel ashamed about Max or his autism, I did feel ashamed about my depression. I was a psychologist: ‘I know what to do. How come I can’t fix myself?’ I hid my psychological problems from anyone outside my immediate family. My expectations for myself were so high that they slowed my path to recovery. Even though I would never feel that a client of mine was weak in any way, I thought I was weak. I was taking medication and it was hard and I was doing therapy and it was hard. There was shame about me being depressed and ‘why can’t I hold it together?’
BLOOM: How did you cope with your own issues and Max’s?
Alicia Hendley: Once we were hooked into the system there was a lot to be offered. We went to KidsAbility and they had a lot of services before school started. Emotional regulation is Max’s biggest difficulty. When Max was in a meltdown it felt like a storm. And when he was littler if he would hit himself that was something I could hardly bear to see.
The occupational therapist had me stay in the room so she could teach me ways of helping calm him down. I learned a deep pressure hold I could do and that was huge. It didn't help my mood—once I got in that depression I was in it—but I did start to feel more hopeful that there were ways to help him. We did a number of rounds of ABA, but here that just means a couple of hours a week. We never got into morning-to-night services. He still got to be a kid.
BLOOM: Did anything help your mood?
Alicia Hendley: We did a program called Stay and Play where children with disabilities were paired with typical kids of the same age to play, while their moms received education in another room. Every week they had a topic for parents, but it quickly became clear that the mothers were most interested in talking with each other.
We were all isolated and we wanted to connect. We would complain about things. We would commiserate. We would laugh and talk about our lives in general. We all ‘got it’ when a mom said that if she hadn’t packed her child’s orange spoon there would be hell to pay. We got that this wasn’t a bratty kid, but a kid for whom the world seems very unpredictable and having an orange spoon makes it less scary. I felt a huge sense of relief in that group and that maybe I could be the mom I wanted to be.
BLOOM: What advice would you give a parent who’s struggling with their child’s diagnosis?
Alicia Hendley: I needed to have a professional outside the family to talk with, a good solid therapist who was familiar with working with families with kids with disabilities. The sooner parents do that, the better. My husband and doctor pushed me to see a social worker and I thought 'What's she going to do that I don't know?' But she was so beneficial and helped me so much.
The first thing I would tell new parents is 'let yourself feel whatever you feel and it's okay to grieve. It doesn't mean you love your child any less or are a bad mother.' I don't believe there are any bad feelings. If you instantly try to be happy or accepting it may be artificial. I needed medication. Not everyone needs medication.
One of the best things is physical activity. It's been shown that walking every day is as good as certain types of medication for mild depression. You need support from family and friends. Maybe they don't understand about your child's special needs, but perhaps they can support you to have some time to yourself.
Journaling helped me. I work really hard on taking care of myself now. Once my little boys are in bed, I collapse for a few hours. I read, spend time with my husband or watch mindless TV to recharge. I used to try to fill all of those hours with things that needed to be done. Self-care is important: taking that bath, having that scented lotion or special snack or listening to beautiful music.
BLOOM: Was there any kind of therapy that your social worker did that was helpful?
Alicia Hendley: She'd let me vent and then she would frame things in a slightly different way and it was really about self-acceptance. She was accepting of me and none of my feelings were 'bad' and I wasn't a ‘bad’ mother or person. She helped me see things in a less extreme way and to catastrophize less. She talked a lot about caring for yourself and being gentle with yourself. She asked 'What are the moments that you love with Max?' I'd be wanting to talk about a horrible meltdown, and we would talk about it. But then she'd say 'What about the next morning?' and I'd remember that Max and I woke up at the same time and snuggled on the couch.
BLOOM: What helped you accept autism?
Alicia Hendley: Reading more of what autistic adults have to say about their experience. Initially I read up on Autism Speaks but it didn't help me in terms of acceptance. The message was 'Oh no, this is a tragedy.' I see my son, and when he's not struggling with a meltdown, he's not a tragedy. I acknowledge that yes, he needs supports in different areas. I don’t pretend he doesn’t.
I started getting asked a question that many parents get asked: 'If there was a magic pill that would take away the autism, would you give it to Max?' I really thought about that question. I read these heated debates on Twitter about a child hidden beneath the autism, but my experience is no, Max wouldn't be Max if he wasn't autistic. There's an autistic boy in front of me and it's part of the wiring of his brain and it's who he was, I believe, inside of me. If I took away the autism I wouldn't have this child and that would be a tragedy.
As I began to read more from adults writing about autism it helped me toward acceptance that this is a difference. There are challenges because whenever you're a minority, in terms of being different, there are challenges. If stimulation can be that overwhelming it can be a disability and you need to learn ways to cope.
BLOOM: Did you ever consider not sharing your journey with depression in your writing?
Alicia Hendley: I remember the first time on my blog when I wrote that I had a mood disorder and pressed 'send' I felt like I wanted to take it back. I felt horrible that people would know that I wasn't just this great mom trying to help her son, but that I have struggles too.
The initial draft of the book was all about Max, but it felt like so much was missing. Not including any of that felt false and it also felt too much like 'Look at me, I'm this great mom.' But I definitely didn't have it all together. And many parents don't. They grieve, they second guess themselves, they make mistakes.
BLOOM: Why did you decide to write the book?
Alicia Hendley: I was working as a psychologist when Max was diagnosed, and had years of training, and yet I felt completely lost and didn't know what to do. That made me wonder about other parents and how isolated they must feel. On my blog, parents wrote about feeling like they’d stepped off the world: people didn’t understand, family didn’t understand. I hoped the book could be helpful to other parents, especially the not-so-positive parts in the beginning where I was clueless and helpless.
BLOOM: Did you return to your job?
Alicia Hendley: No. I know that I invest too emotionally in my clients and that would put me at risk for getting depressed again. It’s still a bit hard for me when people ask ‘Oh, how come you’re not back at being a psychologist?’ It’s taken a long time and I don’t think I’m completely over the shame. But I’m getting there. I’m still working on self-acceptance.
There’s been so much research recently about how chronic stress puts parents of kids with disabilities at greater risk of physical and mental health problems, including the suggestion that it can cause us to age faster.
That’s always made me feel pessimistic and kind of doomed.
I figured it was some kind of fluffy book, but when I later pulled it up on Kobo, I realized it was written by Stanford University psychologist Kelly McGonigaland has a lot of research behind it.
Her premise is that most people view stress as toxic and harmful to our health and that this belief creates physiological responses that lead to a self-fulfilling prophecy.
On the other hand, there are people who view stress as enhancing: they see it as improving work performance, improving their health and vitality, and something that can be harnessed to promote growth.
I haven’t gotten far into the book, but McGonigal summons research that suggests that how you expect stress to impact you—either positive or negative—plays a role in how your body responds to it.
She references research that shows “that people who believe stress is enhancing are less depressed and more satisfied with their lives than those who believe stress is harmful. They have more energy and fewer health problems. They’re happier and more productive at work. They also have a different relationship to the stress in their lives: They are more likely to view stressful situations as a challenge, not an overwhelming problem. They have greater confidence in their ability to cope with those challenges, and they are better able to find meaning in difficult circumstances.”
And she says she’s not talking about trivial, garden-variety stress like getting stuck in traffic. People who have used her techniques have found them most helpful when dealing with major life losses.
So I’m just throwing this out there, thinking that you too may want to learn more about this research and how it can apply to parents of children with disabilities.
In the meantime, I'm going to take a brisk walk around Spiral Garden.
I just read a fascinating review of the new book Do No Harm, a memoir by one of Britain's top neurosurgeons Dr. Henry Marsh.
New York Times reviewer Michiko Kakutani describes it as "an extraordinarily intimate, compassionate and sometimes frightening understanding of his vocation."
This quote from the book stands out: "It's one of the painful truths about neurosurgery that you only get good at doing the really difficult cases if you get lots of practice, but that means making lots of mistakes at first and leaving a trail of injured patients behind you."
This reminded me of a National Post story last month in which a Toronto surgeon advocates for ongoing coaching of surgeons using video replays of operations.
"We graduate, and then we start practising," said Dr. Teodor Grantcharov of St. Michael's Hospital. "And nobody watches anymore. Nobody sees what you do and how well you do it. We're waiting on adverse outcomes."
The Post story references a study by Grantcharov in the journal Annals of Surgery that compares coaching residents using video to conventional training in the class and in the operating room with senior surgeons.
According to the study, general surgical residents at the University of Toronto who met with an experienced coach who used a video of a trainee performing an operation to identify errors, then showed an expert clip and gave advice, performed at a higher skill level and made barely half as many technical mistakes as those taught conventionally.
It works for training athletes and pilots. Doesn't it seem like a no-brainer that it would work for surgeons, including neurosurgeons?
Here's author Julie Keon reading from her new book What I Would Tell You: One Mother's Adventure with Medical Fragility about raising her daughter Meredith, who was born with severe brain injury. The book, targeted to parents and professionals, can be purchased on Julie's website.
I was delighted and honoured to interview Julie Keon, author of What I Would Tell You, on Saturday at Holland Bloorview.
Julie’s book is about raising her daughter Meredith, now 11, who was born with severe brain damage. What’s unique about this memoir is that it’s structured around deep practical truths Julie has learned that will improve understanding between parents of kids with disabilities and the health professionals who work with them. A must-read chapter in the book is directed to clinicians—doctors, and also therapists, nurses, social workers and teachers. It includes 10 suggestions. I am including the first four below (the following belongs to Julie Keon and is copyright 2015). Please read these and share with the clinicians you work with.
1. I do not think you are God. There is far too much pressure placed on doctors. They cannot, and should not, have all the answers. Nor can they prevent catastrophic outcomes. As much as you deserve tremendous respect (as all of us do), you might be relieved to know that I do not hold you up on a pedestal or expect you to perform miracles. You are human, and I do not expect you to predict the future or a life expectancy. Nor do I expect you to know exactly what is going on with my complex child. I appreciate it when, with all of your years of experience and knowledge, you can look at me and tell me that you do not know the answer. I do not need either shaky hope or dark predictions. What I do need is the truth as you know it, regardless of whether or not you believe I am able to handle it.
2. Be aware of how long I have been on this path. If we are meeting for the first time because my baby was born just days or weeks earlier, please keep in mind that I am exceptionally fragile right now. I am not only learning that my child will have lifelong issues, but I am also in the middle of the postpartum period. Please be mindful of my tender emotional and physical state. If we are meeting years into this journey, do not assume that I have become accustomed to the fact that there is a DNR (do not resuscitate) form in the desk drawer in our living room, in the glove compartment of our van and in our daughter’s lengthy hospital chart. Please know that updating this form never gets easier. Speaking nonchalantly about our child’s life expectancy is insensitive, whether you intend it to be or not. It will always be a delicate topic for us. Knowing that we will likely outlive our daughter will never, ever be acceptable to us.
3. Meet me where I am. Please do not expect me to be where you are mentally or emotionally, for I am not there yet. I have not lived the sorrows and losses you have witnessed. I have not experienced even a fragment of what you anticipate for our future. I have only lived this life for a decade, and anything beyond this moment has yet to be lived. Use caution when sharing with us the medical outcomes of other families “like ours.”
4. Unless absolutely necessary, please refrain from asking me about my pregnancy and birth. Especially in the early days, months and years, having to explain how and where our daughter was born each time we enter an emergency room, hospital or medical clinic becomes redundant and is unnecessary, especially when our visit is to rule out an ear infection. It is emotionally invasive to make us relieve this intimate and personal experience with virtual strangers, simply in order to fulfill clinical checklists. Interestingly, by the time we have integrated this experience into that part of our brains that deals with difficult experiences, you will no longer have a need to ask.
Do these suggestions resonate with you as parents? Please add your own in the comments. Julie's book is available to be borrowed through Holland Bloorview's library.
I am delighted to be interviewing Julie Keon (right) about her book What I Would Tell You this Saturday May 9 at Holland Bloorview. You can still RSVP to the event here.
Julie’s book is about raising her daughter Meredith (above with dad Tim), who was born with severe brain damage. I’ve read many memoirs about parenting a child with disabilities, but this is the first one that’s packed with deep, practical truths. When you read What I Would Tell You, get ready to feel like Julie can see into your heart and understands when your courage for what some people call “extreme parenting” has run dry. As I flipped through the book, so many chapter titles resonated with me. Then I hit “Befriending Grief.” What? I’ve always resisted grief, pushed it down. The thought of making it a friend that I welcome in for a cup of tea, as Julie suggests, was hard to imagine. Then I read the chapter and when I next felt grief I did what Julie said. And I realized that it did, indeed, change the dynamic, turning it into an act of great self-compassion. This is an excerpt from that chapter. Read the words carefully, and then when you feel the pain of grief, stay with it, as a friend would, follow these steps, and tell us what happens!
“Grief can be our silent companion, something to be tended and nurtured. Think of grief as a person knocking on your door who really wants to see you. They knock incessantly...When the knocking starts, instead of hiding, you can take a deep breath and welcome this person into your home. You set a few reasonable boundaries as to how much time you have to give and then you put the kettle on. You settle in for some hot tea and conversation. As the visit progresses, you notice that it isn’t as bad as you thought it would be. You are discovering that this person you had always hidden from is wise and has much to offer.”
And later:
“Trust that the deeper you allow yourself to know your grief, the deeper the joy you will feel when grief's visits get further and further apart. There is no barricade large enough to keep grief out. Welcome it with open arms, serve it warm tea and sit with it without judgment, knowing that grief will come and then it will go, as long as you give it the attention it needs.”
In 2012, 25 scientists from six countries came to the University of Toronto to talk about new ways of looking at rehabilitation for children and adults. The result is Rethinking Rehabilitation: Theory and Practice, a book co-edited by Holland Bloorview scientist Barbara Gibson.
BLOOM: Why is there a need for this book?
Barbara Gibson: Much of what we do in rehab is about helping people to thrive in their lives—sometimes as they are. But because what we do comes from a medical tradition, there’s an assumption that disability is a 'problem' that needs to be solved. Much of what we're doing in research is still trying to 'fix' impairments. This assumption structures what we do and how it’s funded. Even though we talk about how we’re interested in quality of life, participation and inclusion, rehab is mostly thought of as a branch of medicine and funded largely by government ministries of health. The message we unintentionally send in rehab is that the child or adult needs to change, and maybe that’s not always the right message. We'd like to help people to thrive or flourish or live well—something that’s central to the goals of rehab programs—by expanding our thinking beyond the underpinning of medicalization.
BLOOM: What would be a medical assumption underlying rehab?
Barbara Gibson: In one of the chapters, the author, who has spina bifida, talks about needing a hip replacement for hip pain. Over and over again, she had to fill out questionnaires that asked how difficult it was for her to carry groceries or to climb the stairs without a railing. These are standardized assessments we use all the time in rehab that assess physical function. She used a wheelchair and she said 'None of these questions apply to my life, why am I filling these out?' And the assumption is that your quality of life is lower if you have trouble walking up stairs, or if you use a cane. We're not trying to get rid of the medical, but to be reflective about how we use it.
BLOOM: It must be demoralizing to be constantly compared against a norm that doesn't make any sense for you.
Barbara Gibson: 'Normal development' is an underlying principle that's ingrained in children's rehab. The way we provide therapy is to help children approximate the normal developmental trajectory as much as possible. Having said that, we know most of the kids we work with won't be able to do that. We know from the beginning that they won’t achieve ‘normal’ functioning and yet we test them against these parameters all the time and send them to therapy and say your goal is to do 'X.' In the end the child and parents know that they didn’t reach these goals, that they ‘failed’ according to the tests. By comparing children to those normal milestones we set up children to not be successful and to internalize those ideas. And parents, too. What parent doesn't look to see if their child is following the milestones and not feel disappointed if they're not?
BLOOM: What would be a different way of looking at rehab?
Barbara Gibson: The last chapter is about how we teach people with new spinal cord injuries to use wheelchairs. It explains that this is more than learning a skill—it’s adopting a new way of understanding their body, and by extension, themselves. The authors ask you to imagine if you were in an accident and you emerged as a different gender, or a different race. What kind of therapy would you need to learn to become a new kind of person, while still having elements of the old person?
BLOOM: I read that chapter and it was interesting because they likened learning how to use a wheelchair to making it a part of your body. So the wheelchair is more than something mechanical?
Barbara Gibson: Wheelchair users tell us ‘it’s just part of me. I can’t imagine myself without it.’ And often they don’t like it when someone touches their chair because it feels like they’re touching their body. It's a different way of doing things and ‘being.’ It's about how you incorporate the wheelchair into how you feel about yourself. Someone with a congenital impairment has the same process. They grow up figuring out who they are, how they think about themselves, and the rehab intervention they get shapes that. We need to do a better job of helping people have a positive sense of who they are in the world.
BLOOM: I think our overfocus on independence often works against that.
Barbara Gibson: A new way of looking at things is the notion of assemblages, which I write about elsewhere. Instead of talking about independence we talk about 'what are the dependencies that can help people live well?’ We talk about a conglomeration of elements—the person, the wheelchair, their speech generating device, their mom, a house that's designed for them. So we look at whether this assemblage of elements enables practices or disables them. We don't analyze whether the person is independent, but whether their dependencies are enabling. The idea is basically that it's completely okay to use whatever you need to use.
BLOOM: How is the book structured?
Barbara Gibson: There are three sections. The first sets the stage with where we are right now in rehab and where we came from. One of the chapters is about the history of rehab, starting at World War II. The second part is about how we apply these ideas in relation to particular populations or topics, like identity. For example, one of the chapters is about whether the setting you're in makes a difference to recovery.
BLOOM: What kind of things would be different in settings?
Barbara Gibson: We talk about therapeutic landscapes and the messaging in the environment. For example, is it a place for 'sick people' or does it enable you to think about what's new in your life and to think about your identity in new and different ways? Does it repress emotion? Sometimes patients are made to feel that they can only express positive emotions with professionals. You know, 'we're all cheerleaders here.'
BLOOM: There is sometimes that pressure to remain positive no matter how you're really feeling and that's exhausting.
Barbara Gibson: Setting is not just about the physical, but also how the environment is structured and how scheduling works. The last section of the book is about if we take this seriously, what would we do? If we rethink rehab, what might it look like?
Rethinking Rehabilitation can be borrowed from the Holland Bloorview library. It’s targeted to researchers, clinicians and students, but will also be of interest to families. The Canadian Institutes of Health Research and the Health Research Council of New Zealand funded the event at the University of Toronto that brought the 25 researchers together.
Canadian parenting expert Ann Douglas spoke with BLOOM about her new book Parenting Through the Storm—a collection of strategies for raising children with mental health, behaviour or learning challenges, and maintaining your own health and happiness in the process. It’s Ann's most personal book to date (see above with her husband and four children). Each of Ann’s children has struggled with something, including bipolar disorder, depression, anorexia, Asperger syndrome and ADHD.
BLOOM: What made you want to write this book, particularly at this point in your career?
Ann Douglas: I remember thinking at the time, when my kids were going through such a difficult time, how it seemed like a lot of mainstream parenting books just didn’t really speak to me. I used to get infuriated by magazine articles that would say something like: ‘Better behaviour from your child in 30 days.’ That kind of article would make me crazy because it felt, to me, like the ‘Thinner in 30 days thing;’ it was unrealistic and didn’t apply to everyone. It reminded me of the kind of advice that sometimes you'd get from a well-meaning friend or relative who’d say ‘Well, tell them how to behave.’ It's like ‘Well, honestly, you think we haven't tried that? They're having a really hard time. I think you're not understanding the extent [to which] we're struggling, and the fact that we've tried everything we can think of.’
I wanted to write a book that would help parents to feel a little less alone and a lot less judged. So that was sort of my goal. In terms of why I decided to write it now: back when we were struggling, I was going through such a hard time I could hardly write a grocery list. I was not in a position to be able to look at things analytically and to be able to go into the problem-solving mode, because I was feeling stressed and overwhelmed by the situation. I think I needed to have a bit of time so that I could see that my kids could come through the other side, they could make it through the storm, and that we could thrive as a family. Only then did I feel like I could sort of start to think through what was effective, what worked for us, and then do the research to find out what worked for other families, and what strategies research was identifying as helpful.
BLOOM: One of the key themes is that in order to support your child who is struggling, parents need to take care of themselves. Is this a new idea?
Ann Douglas: No, I don't think it is. But I think that it’s a message that parents can’t hear often enough. Because you’ll say, ‘yeah, yeah, yeah, I know I really should be getting sleep or exercising or whatever, and I will once my child is doing this better, or my child gets past this milestone.’ Then you keep postponing that time of self-care and you can't do that indefinitely or you become totally depleted and burned out. I say this from personal experience. One of the reasons I'm so passionate about this stuff now is because I really did sort of hit the wall: I wasn't sleeping well. I wasn't eating well. I gained about 100 pounds and I had to really work hard to lose that weight.
BLOOM: For parents who feel overwhelmed with the demands of their child, how can they start to care for their own mental and physical health?
Ann Douglas: Sometimes it’s just little wee tiny things, like if somebody offers to help in some way letting that person help as opposed to going ‘no, no, no, we're okay. Don't worry about it.’ People want to help, so accept those offers because they can only help to make your life easier. As long as it’s not a high-maintenance person that's going to come in and start making your life miserable. We’re talking about lovely friends and family who do everything from fold laundry, run errands for you, or stay at your house with your child while you go for a walk around the block if that's all you feel you can manage at first. Because it really is very, very stressful and, I think, it's the emotional toll: the fact that your brain is still working away at solving the problems and worrying about your child 24/7. [For example], if you wake up in the middle of the night it can be hard to get back to sleep because you're feeling so worried and overwhelmed.
Looking for little ways to inject some self-nurturing or some fun into your day [is also important]. Even if it's just, when you get a momentary lull, to flip through the pages of your favourite magazine, or having a cup of your favourite tea, and connecting with people who support you. Whether it’s firing off a quick text message to your best friend saying this wonderful thing happened today, or this incredibly frustrating thing happened today. Just having an outside connection that can say, ‘you know what, you're doing a great job and you just keep doing that.’
BLOOM: Why is it so hard for parents to take care of themselves?
Ann Douglas: I think a large piece of it is that you know your child so well, and you’re into such a groove or routine with your child, that you worry: if I have a child who has autism, for example, [who] doesn't respond well to changes in routines, if I go down the street to have coffee or lunch with my friend and somebody else is here they're going to do things a different way and my child is going to find that challenging. And yes, this is true, but if you look at the cost-benefit analysis, maybe having a parent who feels refreshed and can take on the day is worth a little bit of upset. Plus you want to encourage your child, over time, to work on flexibility, so that can be one way to do it.
I think to realize that it is hard; it’s not as easy as just walking out the door. There’s so much more planning and worrying and thinking involved. But I know [that] so many parents, once they take that step, they say, ‘Why didn't I do this years ago?’ Because they really feel that it has made that much of a difference in their ability to cope and not to feel flattened and depleted all the time.
BLOOM: What do you think happens if parents don't make themselves or self-care a priority?
Ann Douglas: They get really burnt out and really depleted and their physical health can suffer. Their mental health can suffer. They can't be the kind of strong advocate for their child that they want to be. They could be really grumpy and unable to focus on big-picture parenting goals, but get caught up in the emotion of the moment because they [don’t] have any self-control resources left.
BLOOM: In the writing of this book you interviewed other parents and experts at length. How did you decide what to include?
Ann Douglas: Well first of all, whenever I write a book I tend to get a lot of input from parents. So I put out a call through all my usual channels asking if people would be willing to be interviewed over a period of months about their family's experiences. I had about 50 families step forward. I interviewed them via a series of eight questionnaires that were sent out over about two to three months. It was probably about eight hours’ worth of work per family answering my questionnaires. I'm hugely grateful for the time and effort they put into that because what I walked them through [was] all the different stages: What was it like for you when you didn't know what your child was dealing with? What was it like going through diagnosis and treatment? What are your hopes and dreams for your child? What is your child's life like now? So that I could write a book that would cover those different chapters in the family's journey.
In terms of the researchers and the experts, I did a huge amount of research. I read about a thousand different journal articles, about 40 books, and an awful lot of online research to find top Canadian researchers who would have something helpful to say to families. Luckily, almost everyone I asked for an interview managed to fit it in, including very, very busy people who were flying across the country to speak at conferences. I'd get them booked eight weeks in advance for 15 minutes on a Friday morning. But I managed to get a lot of really good information and to get them to sort of boil down in practical ways what this could mean to make life better for parents who have a child who’s struggling.
BLOOM: Were you surprised about how many families were willing to share their stories?
Ann Douglas: I was surprised at the depth and how much they trusted me. They told me very intimate and personal and painful times in their lives and they trusted me to portray their stories in a way that honoured themselves and their children and their struggles as opposed to judged. They made themselves vulnerable and that takes a lot of courage.
BLOOM: What do you hope parents take away from the book?
Ann Douglas: I hope that parents emerge with the feeling that they’re not alone and that they're doing the best they can in a really difficult situation. I think it's so important to remind parents to treat themselves with the same kindness they would extend to a friend who’s struggling. So in other words, we're talking about self-compassion. Because self-compassion is life changing and if I can just spark that idea in people's minds, of being a little kinder to themselves, they'll find it so much easier to deal with the day-to-day challenges of what they're facing in their families.
BLOOM: And professionals, what do you hope that they take away?
Ann Douglas: I hope professionals who read the book get a sense of how hard it is for parents and the fact that parents really are doing the best that they can. That way, professionals may be less inclined to judge or assume they know better and recognize that the parent is the true expert when it comes to their child and their family situation. If parents and professionals can work collaboratively, sharing the same goal of helping the child, amazing change can happen.
BLOOM: There are many families mentioned in the book, including your own, who have several children with mental health, behavioural and neurodevelopmental challenges. Is this common?
Ann Douglas: It is. Often a lot of things have some kind of genetic basis and we know that there’s usually a mix between genetics and the environment. So it’s not exclusively genetic, but you know there’s going to be a whole bunch of genes popping up in different family members, so it’s not unusual at all for there to be people that share the same diagnosis or have related diagnoses. Maybe one person has problems with anxiety, and somebody else with depression, and somebody else with ADHD, and so on.
BLOOM: Which can make it even more challenging?
Ann Douglas: It can, especially if the parents also share the diagnosis. Maybe [you] have ADHD and are trying to parent kids with ADHD and at first it can feel like ‘oh wow, this isn't going to work very well’ but then realize that you've gained a lot of wisdom and insight living your life and figuring out how to manage your particular challenge so you can share some of those insights with your child. You can also be more understanding because you know that these challenges are for real, they're not something made up and it’s not just a child trying to be difficult or act up for the sake of acting up. There’s a reason for the behaviour.
BLOOM: Was there anything that you learned while working on the book that was particularly new, interesting or surprising given your experience?
Ann Douglas: The information about self-regulation was something I hadn't done a lot of reading about until I started doing the research for the book. The idea that we can both boost our positive emotion and reduce our negative emotion just by making choices in our daily life; that was mind blowing for me. Just learning how taking a couple of walks a day can help me to manage my anxiety. Also, the piece about self-compassion: that it’s so important to change from the self-critical channel in your head where you hear mean things being said to yourself about yourself, to a much more self-compassionate kind of stance where you remind yourself that you're doing the best you can in a difficult situation. Then trying to think what you can do to make life better.
BLOOM: How did you decide what language to use to describe conditions?
Ann Douglas: I want to be as inclusive as possible so that everybody can sort of see himself or herself in the book. I also believe when we say someone has a mental health disorder it sounds, to me, so negative and so judgmental. I picked up on the language about calling things ‘a challenge’ from attending a mental health conference last year that was hosted by the Institute of Families for Child and Youth Mental Health. They asked the young people themselves ‘What language do you prefer when people are talking about your mental health problems/difficulties/challenge?’ And they said they would very much prefer the idea of using the word ‘challenge’ because that left the door open to possibility and hope, because if it's a challenge you can just keep working at it. Whereas if it’s a disorder, it sounds a lot more definitive and that there's not quite as much room to grow.
BLOOM: You repeat full names and diagnosis quite often. Is the book meant to be read from start to finish? Or can you kind of skip around?
Ann Douglas: You can dive in to whatever you need most today. If your child is having a hard time at school you might dive into the advocacy section and if you’re preparing for that first meeting to get a diagnosis, you might start there in the book. If you just want to know what it’s like for other families, you might read the stuff on how it is for other people and their families. That’s why it has a really good table of contents and comprehensive index—so that whatever your issue is today when you kind of feel like you're hitting the wall, then flip open the book and look for the appropriate section. You might be inspired to read other sections around it, but at least if you have a burning question or issue today, then you know where to go.
BLOOM: What kind of feedback have you had? What are you hearing from parents and professional groups?
Ann Douglas: They’re really grateful that there is a book like this now so that they don't feel quite so alone. They are just in awe of the braveness of the families who decided to share their stories in an effort to try and help other parents. I share that feeling of appreciation because if other families hadn’t been willing to share their stories there wouldn’t have been a book.
BLOOM: Was it challenging to write candidly about your own experiences?
Ann Douglas: I had to think hard about what I was prepared to share and what I wasn’t prepared to share, and I also needed to check things out with the kids because it’s not just my life, it’s their life too. So I made a lot of really conscious and deliberate choices about what I was going to write about. A couple of years ago, I sent out a tweet on Bell Let's Talk day saying that I lived with bipolar disorder and I thought it’s really important for people to know people out there who are dealing with a particular challenge or disability or whatever. Because if we don't have some sort of role models out there then nobody will ever understand that it’s possible to have a diagnosis and an amazing life. I think that I feel a real responsibility as somebody who, yes has bipolar disorder, but also, yes, has a pretty great life; that I should say I’m not going to be afraid to tell people I live with this.
BLOOM: Was it difficult to choose what you were going to include?
Ann Douglas: I think I just wanted to be as honest as I could and talk about different experiences that my kids had had and that we’d had because, again, not wanting other parents to feel like they were doing it wrong if their child was having a hard time at school or if they were having a hard time navigating the children’s services or mental health care systems. The systems are complicated and schools don’t always have the resources they need to be able to respond to the needs of children. I think that if we all talk about these challenges then that’s the first step to getting these various systems funded enough that every child gets their needs met sooner rather than later.
A new study shows that parenting kids with disabilities over a long period of time jeopardizes cognitive function—especially memory—in mothers, but not in fathers, due to chronic stress.
The study—published in the Journals of Gerontology: Series B last month—used a large U.S. survey of parents from 2004 to 2006 to compare 128 parents raising disabled kids with 512 parents whose children did not have disabilities. The children with disabilities had autism, cerebral palsy, Down syndrome, attention deficit or intellectual disability.
Parents were tested on verbal memory and fluency, mental processing speed, reasoning, working memory and ability to switch their attention. Researchers also assessed parents’ physical and mental health, physical activity, social support and “negative parenting experience.” To determine the latter, participants were asked to rate how true six statements were for them. For example, “I feel good about the opportunities I have been able to provide for my children” and “problems with my children have caused me shame and embarrassment at times” and “it seems to me that family life with my children has been more negative than most people’s.”
Interestingly, at a younger age, mothering a child with a disability was associated with better performance on memory tasks, but by age 60 the pattern had reversed itself. Mothers who had higher levels of “negative parenting experience” were more forgetful, leading researchers to conclude that chronic exposure to parenting stress predicted cognitive decline for mothers of children with disabilities. Seventy-six per cent of mothers of kids with disabilities reported significantly higher levels of negative parenting experience compared with 46 per cent of the comparison group mothers.
The study found that mothers of children with disabilities tended to be much more depressed, less physically healthy and to feel less in control than mothers without disabled kids. They also had more problems handling their kids and less support from friends than women whose children do not have disabilities (yup, we’ve seen parent isolation in other studies about raising kids with disabilities).
Mothers with a strong support system, a sense of control and a history of regular exercise had better memories than those without.
This point is critical. “Keeping quality friendships, sense of control for life and [a] physically active lifestyle would help to protect these parents from accelerated cognitive aging,” said Jieun Song, a researcher at the Waisman Centre at the University of Wisconsin-Madison, who led the study.
I classify all of these things under the header “self-compassion.” In her new book Parenting Through The Storm, Ann Douglas says being kind to yourself in the way you would treat a friend is one of the best things you can do to support a child who is struggling (see this recent blog post). I know, it's counter-intuitive, isn't it?
But still, if you’re a mom of a child with disability, you’re probably thinking: “Oh great. Now, to add to my never-ending “to-do” list, which includes taking my kid to therapy and multiple specialist appointments, doing therapy exercises at home, advocating at school and in the community, making my home the ‘funnest’ place for playdates on the block, and doing my child's bathing and physical care, I need to step it up by going to the club regularly and being a social butterfly. To be honest, I’m not sure how you go about increasing number 3 in the study—the sense of control you have over your life! Isn’t that an illusion? Ha ha! But I digress.
So, how do you find the time and energy to get fit and healthy and socially connected when you’re already running flat-out 24-7 with your kid with special needs?
Gretchen spoke about her new book on habits—how we can develop good ones and break bad ones. I think we moms of kids with disabilities can benefit from some of her research and tips.
Good habits are “freeing,” Gretchen said, “because they eliminate decision-making and self-control” (in the case of the latter, if you’re like me you’ll find yourself lacking). Gretchen noted that if you’re in the habit of going to the exercise club at 6 a.m. every morning you don’t think about it, and you don’t fret about it, you just go.
So why is it so hard to drop bad habits or develop ones that we know would make us happier—or, in the context of the study on cognitive aging in moms of kids with disabilities, protect our brain power?
Because we don’t all have the same aptitude for forming habits or the same attitude towards them, Gretchen said. There isn’t one solution that works for everyone. “It’s important to figure out what kind of person you are” because that will determine which of 21 strategies, or a combination thereof, may work for you, she said.
One approach I think we mothers can try to help us work into our schedule habits that keep us physically and mentally healthy is called the “strategy of four tendencies.”
This is about how we deal with expectation—both outer expectations, like a work deadline, and inner expectations—and varies from person to person. Gretchen said we tend to have four responses to expectations. “Upholders” readily respond to outer and inner expectations and see them as equally important. “Questioners” will meet expectations if they agree they make sense. They hate arbitrary demands and need to turn an external request into an internal expectation to make it work. “Obligers”—the most common style, and certainly mine!—meet outer expectations well, but struggle to meet inner ones. Finally, “rebels” resist all expectations.
In talking about “obligers,” Gretchen noted that we’re often dissatisfied and frustrated because we’re so good at meeting other people’s demands but so bad at taking care of ourselves. To reverse this, we need to create “external accountability” for being kind to ourselves. That could mean paying for a class or coach, creating an accountability group with friends or similarly-minded people online, or coming up with funny ways that force you into good habits.
For example, friends who want to help each other work out regularly switch shoes at the end of their workout so they “have” to return for their next scheduled workout (otherwise the other person can’t exercise). One woman who wanted to get up at 6 a.m. every morning programmed Hootsuite to post an embarrassing message about her on Faceboook at 6:15 unless she got up and disabled it. Someone who wants to read should join a book club.
I think we moms of kids with disabilities should band together to create habit groups (except with a much cooler title)—perhaps online—where we encourage each other to do healthy things a certain number of times a week. What do you think?
Gretchen also shared other habit strategies.
For example, if you’re an “abstainer,” it means you do well when you give up a bad habit “all together.” This means not purchasing Haagen Dazs at the grocery store or keeping Hershey’s kisses in your office desk and deleting Candy Crush from your iPad.
Another tactic involves giving yourself “healthy treats. When we give ourselves healthy treats we energize ourselves and feel comforted,” Gretchen said. Stay away from food, drink and shopping in this category, and instead, be imaginative: listen to a favourite podcast or buy yourself some music.
When developing good habits, it's useful to consider goals as “milestones” rather than a “finishing line.” For example, many people commit to training for a marathon, then stop running. “That’s because the idea of the ‘finish line’ disrupts the habit,” Gretchen said. “You have to start over, and that’s hard.” So instead of telling yourself you have to lose 20 pounds, tell yourself you need to eat healthy forever.
Gretchen says “outer order contributes to inner calm” so use her one-minute rule to reduce clutter. If you can do it in less than a minute—hang up a coat or put some papers in the recycling, for example—do it. Instead of feeling you have to overhaul your entire house, “do it one minute at a time.”
Finally, “the strategy of convenience” involves making healthy things convenient, and unhealthy things inconvenient. For example, disable one-click shopping and put your cell phone in a closet instead of in your back pocket. “To change a complex habit you may need to use three to five strategies,” Gretchen said.
If you want to get a copy of a starter kit to help you begin a habits group with others, where you encourage each other, e-mail Gretchen at grubin at gretchenrubin dot com.
Judith Scott was an acclaimed sculptor whose abstract pieces—combining fibre and found objects like an umbrella or bicycle wheel—show in galleries and museums around the world.
Yet for more than 40 years, her talent lay dormant.
Judith, who died 10 years ago, had Down syndrome, was deaf and lived most of her life in an institution. Ironically she was deemed too “retarded” to draw with crayons while there. Judith’s life changed at age 42 when her twin sister Joyce brought her to San Francisco and became her guardian.
Joyce enrolled Judith in Creative Growth, a community arts centre for people with disabilities where Judith found her passion.
Joyce’s upcoming book EnTWINed: Secrets From The Silent World of Judith Scott will be published in 2016 by Beacon Press. For seven years the girls lived together in a rural setting on the outskirts of Cincinnati where they were inseparable. At age seven, Judith was sent to an institution three hours away.
BLOOM: What was your early childhood with Judith like?
Joyce Scott: It was idyllic in many ways. We had three older brothers who had their own lives and because we were twins, our parents made this giant sandbox for us where we’d be safe. We played together in this enclosure and had a lot of experiences with nature and the physical world. Behind us were sheep pastures. It was a beautiful place to be children. We slept together and as we got a little older we went around the neighbourhood and played with other children.
BLOOM: What kind of personality did Judith have?
Joyce Scott: She was very loving and outgoing and interested in everything. We didn’t know she was deaf, and what came to be seen as behaviour problems—not coming when someone called her or not being responsive—was related to her deafness. She was very involved in the physical world and now, knowing that she was deaf, I realize the world of tactile sensation and of our touch was a lot more important to her.
BLOOM: How did you communicate?
Joyce Scott: Through signals and touch and she had a few sounds. She understood signals that we developed naturally.
BLOOM: How was her disability explained to you?
Joyce Scott: I don’t remember it being explained. Our parents didn’t even know what Down syndrome was, or have a name for it. I don’t remember realizing she was different for quite a long time, until she started being excluded. I just thought she was Judy.
BLOOM: Why was Judith sent to an institution?
Joyce Scott: She was seen as being more difficult. She’d figured out how to go to the back door where the screen door was locked and get on a chair and climb up and unlock it. She’d wander away and we’d call her and she wouldn’t respond. We had a bad experience when Judy was maybe six where we were next door with a lot of children on the porch and a little one…fell off and her mother had this idea that Judy had pushed her, which was untrue. She said Judy couldn’t come over after that. Our mom carried Judy a lot and she developed back problems. Our parents met with a pastor and a doctor and were told ‘you need to put her in an institution.’ They were told it was bad for the other children for her to live at home.
BLOOM: What was it like when she left?
Joyce Scott: It was absolutely horrendous for her and for me. I woke up and we slept in the same bed and she wasn’t there. I went looking for her and my mother said she was going to a special school where she would learn to talk. At first I thought she was coming back and I thought maybe I could do something to help to bring her back.
BLOOM: Did you visit?
Joyce Scott: It was this horrendous state institution that was something out of Charles Dickens. Terrible. We went regularly for a while, and she came home the first summer, but then our father had a serious heart attack and he died a few years later and that sort of changed everything. Initially she was three hours away but when we were 10 she moved to another place that was four-and-a-half hours away. We would go, but not as frequently. Our mother had a nervous breakdown and was hospitalized. It was very hard on her. She had a lot of guilt and shame about sending her away.
BLOOM: How did Judith influence you?
Joyce Scott: I’ve worked almost my whole career with children with disabilities and families. I was a pediatric nurse and a parent/infant specialist and I did home visiting with parents of babies up to age three who had a disability or were at risk for having a disability. It was an incredibly satisfying and meaningful career for me. So much of what my life has been has been deeply influenced by Judy. When I first finished school at Ohio State I got a job teaching at the state institution where my sister had been sent.
BLOOM: How did you decide to bring Judith to live with you?
Joyce Scott: I moved to California when I was 25 and I would go back to Ohio once a year to see Judy. Later on I was working as a critical care nurse to a family of a baby with medical problems. I became close with the family and went to meditation retreats with the mother. One was a six-day silent retreat. I’ve always been very busy and it was the first time ever that I was quiet. Every day I went deeper inside. Around the fifth day I felt like I came to my heart, my centre. I had this feeling that I was there with Judy and that our core was a central core that we shared. It was like someone turning on the light in a dark room. It became clear to me: ‘What on earth is she doing in an institution 2,000 miles away when she could be with us?’
BLOOM: How did she adapt? Joyce Scott: It was completely unbelievable. She walked in the door like she’d come home and she went into the kitchen. There were dirty dishes and she looked at me and laughed and washed up the dishes and then she took her wet hands and wiped them down my body and laughed. She was always doing little tricks. She had a bedroom and she came in and took things out of her suitcase and rolled them up and put them in her dresser and put her shoes under the chair. She was completely at home—like she’d been waiting for me to realize she was supposed to be there. I had two daughters at the time and the 10 year old became best friends with Judy. She lived with us for a while and then I found her a ‘board and care’ home nearby and she stayed there. We saw her every day and she’d come spend the weekend with us at our house in the country.
BLOOM: How did you find Creative Growth? Joyce Scott: I was looking at different programs and really not liking them. Some had cubicles and people would sit in them separating nuts and bolts. They were doing stupid, meaningless activities and it was isolating. I have a good friend who’s a psychologist and she told me about Creative Growth so I called and went to visit and fell in love with the place.
BLOOM: Was this a public or private program?
Joyce Scott: It was provided through the Regional Center in California, an umbrella organization for people with disabilities, so it was paid for. It was a program from nine to three.
BLOOM: When did Judith first start to show potential?
Joyce Scott: For about two years they were introducing her to different materials. She didn’t like drawing, painting or ceramics. She would draw, but not even look at what she was drawing. Eventually they began to think ‘Maybe this isn’t the right place for her.’ One day Judy was sitting at a table where a visiting artist was working with textiles. Judy took some threads and yarns and found some sticks on her own and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded. After that they gave her free rein to go to a materials room and pick out what she wanted. Once she started fibre sculpture, you could not get her to stop. Sometimes her fingers would bleed because she worked so many hours and so hard on it.
BLOOM: What did her art mean to her?
Joyce Scott: Without language, she couldn’t communicate her thoughts. Tom, the director of Creative Growth, felt she was finding her own language and finding a way to give voice to her feelings and her deep self. The sculptures are her way of telling her stories and speaking her truth. When people are in the presence of them they often say they get this feeling of such intensity and spirit inside them. They feel they’re pulsing with this life force. The idea that her sculptures were her voice—and her language, her paragraphs and sentences—makes sense to me.
BLOOM: How did she feel about the recognition she got?
Joyce Scott: She was becoming well known in ‘outsider art’ and museum circles and people would come to see her. She would usually be quite gracious and shake their hand and then go back to work. It didn’t mean much to her. When she finished a piece she would rub her hands back and forth, as if to say ‘That’s it, it’s done, good job’ and then she would point to the staff person next to her and point upstairs to indicate that the person could take the piece away. Within five minutes she’d start on something else.
BLOOM: You mentioned she had a first show at Creative Growth?
Joyce Scott: Yes. With that first show they brought her into the room where her pieces were on exhibit. These were pieces she hadn’t seen for months or years. The staff was hiding in the alcove, waiting to see how she would respond. She went to each sculpture and either patted it or blew it a kiss or waved to it. There wasn’t a dry eye. It was like she was greeting her long-lost children.
BLOOM: Her talent could have easily remained hidden. Joyce Scott: I feel so strongly that people who may look different or appear to be somehow ‘less than’ or who are labelled ‘less than,’ can and often do have great giftedness and great potential. I see Judy as a kind of a model for that. Who would have thought that someone labelled as profoundly retarded and deaf and institutionalized for most of her life had this amazing greatness within her as an artist? What she needed was an opportunity, a place, and respect.
BLOOM: What advice would you give parents on how to best support siblings of kids with disabilities?
Joyce Scott: Often the focus is on the child with disability and the sibling assumes a caretaking role that is more dominant than is healthy for their own self-development. I think it’s important to encourage brothers and sisters (and mothers!) to stay in touch with their own wishes and dreams. I think it’s important for parents to have special time to really honour the other child.
BLOOM: How did Judith die?
Joyce Scott: She was just about to turn 62. We had gone out to dinner and she seemed to have a stomach ache. She hated hospitals and would become hysterical if I took her to one, so I called my ex-husband, who’s a doctor, to ask what he thought. He felt certain it was just a stomach ache. So we went home and I was lying in bed with her and talking to her and she suddenly stopped breathing. In some ways it was such a gift that she died in my arms. But there’s another part of me that thinks maybe if I’d taken her to the hospital, things would have been different. However, when she was born she was given a life expectancy of 13 years and she’d lived a half century beyond that. So I need to focus on being grateful that she was with us as long as she was.
Learn more about the twins at Joyce Scott's website. The photo immediately below is of Judith's exhibit at the Brooklyn Museum earlier this year. Photo by Ruth Fremson, The New York Times/Redux.
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