Ethan sat in my lap, snuggled against my chest, rambling on in toddler-speak about the stars out his window. The conversation lulled as he took my hand into his. At two years old, his hands were already larger than mine, and much, much stronger.
I was born with a rare congenital birth defect called Arthrogryposis. In the womb, my arms didn't move enough to develop proper muscle tone and the joints from my shoulders to fingertips locked into place.
Growing up, as I learned to eat, write, drive and live using my feet like hands, I didn't often wonder what sort of life I'd have. I felt like a normal girl, so why wouldn't I have a normal life? Only now do I understand how lucky and rare I am. I am a mother with a physical disability.
Ethan intently studied my hand, then his own. He flexed and extended his fingers, then tried to force mine to do the same; they don't. In despair, he sighed and looked up at me with his dark chocolate eyes. "It's not working," he broke the news. "It needs batteries." I couldn't help but laugh at such a precious assessment, but it was the first time he'd really noticed that Mommy is different. I couldn't help but wonder what other questions would come, and whether I'd be able to communicate answers that he could understand. Answers I don't even understand.
A year has passed since that evening; Ethan is now three. More and more, he's asking me to play with him in ways that I just can't. To fly him around like Daddy does. To help him jump high in the air. To drive his play cars fast across the floor. My replies range from, "Mommy's arms aren't strong like Daddy's," to "Mommy can't move the car fast like you. Wow, you're so fast!" to "Hey, look at that interesting (distracting) thing over there!" I'm sure I don't always answer perfectly, and sometimes I don't have the emotional energy to answer at all, but he's beginning to understand that he can't expect me to move like everyone else. He high-fives my foot and places things between my toes when he wants me to hold them. We play Pat-a-Cake with our feet.
I'd be lying if I said I'm not nervous about the future. What if his friends at school pick on him for having such an unusual mom? What if he's put in a position to choose between mocking me and defending me? What will he choose? Will he be bitter over the softball games I can't play with him?
Only time will tell.
I do know that the difficulties we face as a family will make him a more compassionate and stronger person. I know that tolerance won't be much of a struggle for him. I know that it will all work out in the end.
But even now, we struggle to find our place in society. My fears and insecurities have often been enough to hold us both back. For Ethan's first two years, I rarely took him out by myself, even though I was completely capable of doing so. I cringed at the concerned looks we'd get, the kind-hearted strangers stepping in to "help" me, the eyes boring into the back of my head when I fumbled with the baby wipes or crackers. Instead, I'd wait until my husband got home from work and make him go out with us. I'd leave everything to him and risk looking like a detached mom rather than an incompetent one.
Ethan, bless his sweet little heart, thought nothing of the speed with which I did things or the number of times I had to try again. He knew I was capable, I knew I was capable, but in this time when parents with disabilities fight to keep their own kids, I was scared to let people watch me struggle. So I didn't.
Then one day, I let the scandal loose. I uploaded a video to CNN showing how things are for us. I recorded every minute of my struggle with Ethan's snap-up onesie. I showed my twisted little arms and talked about my disability. It was both terrifying and liberating. It was a confession: "Hi, I'm Sarah, and I'm a parent with a disability."
The reaction I received blew me away.
We were headline news on CNN. My inbox flooded with messages from wonderful people like me. Though few had disabilities, we connected. Through pain. Through struggle. Through our need to admit: "I'm not perfect!"
In the time since my headline confession, I've eased my way into society, as a mother. As an imperfect, flawed, struggling mother loving my child more than my pride. After all, isn't that the way he deserves to be loved? Doesn't he deserve to be shown that trying again, ignoring the stares and working through anxiety are important and good and doable? I'm not interested in teaching him how to achieve perfection on the first try.
As a parent with a disability, I have the unique ability to model perseverance, determination and resilience for my children frequently and in tangible ways. I have the ability to show what a person can work around with some effort and creativity. I have the ability to demonstrate what it is to be at peace with my limitations, and find purpose in spite of (or maybe in the midst of) them.
Yes, my disability will create all manner of hurdles for us, but also a world of opportunities that the average family may never be afforded. Even now, as we await the arrival of our second baby in August, I'm nervous about how well I'll adapt to two little ones with my limited physical resources. But if I've learned anything from three years of motherhood, I know that my limitations never turn out to be as big as I anticipate, and children have a way of yanking me out of myself, out of my fear, out of my "I can't" state of mind.
And as my children grow to understand how different Mommy is, may they not only recognize those parts of me that aren't working, but also the beautiful characteristics their trust has pulled out of me.
May they see all the things they've brought to life in me, all the things that work and work well. Because of them. Sarah Kovac is a public speaker, blogger and author who lives near Kansas City with her husband Adam and son Ethan. Her first book In Capable Arms: Living a Life Embraced by Grace can be pre-ordered.
A little over 19 years ago I bought a royal blue, down-filled baby hat with ear flaps that did up with a snap under the chin. It was the equivalent of today's designer baby togs. I used to run my fingers over that hat -- with the plush soft lining and bright azure shell -- and imagine my son's fresh face peeking out of it. It was not a possibility in my mind that he could be anything but perfect, though I don't think I would have used that word. We'd worried when a blood serum test showed I had an increased risk of having a child with Down syndrome. I didn't know anything about disability. I wouldn't agree to an amnio until an obstetrician at the genetics clinic was sent in to berate me. "If you have a Down syndrome baby that'll be a burden you live with for the rest of your life," he barked. Miscarriage would be depressing, he said, but then I'd get pregnant again and have a 'normal' baby. I had an amnio and it came back normal. He would be healthy, like the other babies in the family. He arrived two hours into his exact due date. At one hour old, we were told he had anti-mongoloid eyes and a handful of other unusual facial features. By the next day other anomalies were added, after the pediatrician insisted on examining him alone. I had trotted down the hall with the nurse who took him, clinging to hope. She placed him on the table and the doctor slammed the door. I stood in the hall with a mom who wanted to observe her baby being circumcized. She wasn't allowed in either. When the doctor emerged, I took notes, documenting the seven things wrong with him. Three days later we were trudging through the children's hospital in our winter coats and boots, Ben swinging in his car seat, trying to find the hospital photographer who would take pictures of our son's 'abnormal facies.' That darling little hat the colour of the Mediterranean sea -- too large for him to wear -- sat on a shelf in his room. It seemed to taunt me. I just rifled through our photo albums and I don't have a single picture of him wearing it. When I drove home today I couldn't help noticing the teenagers hanging out on the corners, on their way home from school. As I turned onto our street I saw the preschool twins up the road playing hockey. There are three healthy kids in that family. Just like the family across the road that moved to France: they also had a set of twins and one singleton, all healthy. The long-boarders with loud logos on their shirts were already on our street, careening down the steep hill with the wind in their faces. The girls with long hair stood on the sidewalk, ready to yell "car." I remembered playing for hours on our dead-end street as a kid, returning home with that dirty, salty smell on my skin, spent. An hour later Ben and I walked down our stairs, hand in hand, he wearing his shoe with the big lift, in loose track pants, because he doesn't fit standard sizes. What does he think when he sees these middle-school boys here everyday, I thought, together, roaring down the street? What do they think of Ben? I've never bothered to notice if they look, or how they react. Ben was going to a bar with a couple of his workers and their friends, who wanted to take him out for his 19th birthday. Because he's the size of a six-year-old, I packed his passport for ID. "Do I get to go out for a beer when I turn 19?" asked my 14-year-old son, incredulously. "Uh. Yes. If you want to." "What about Lucy. Renise? Will she go for a beer when she's 19?" "I guess that'll be up to them. But probably." As the older brother, Ben has never been able to trail-blaze with milestones. I've never told him that he'll never drive, and he's never asked, except for the time during his Life Plan event when he said he'd like to learn. And be a zookeeper, or a soldier, have his own house, a girlfriend, and a family. Oh, and travel the world. It was a blue-sky event, so we didn't discuss the likelihood or practicalities. When I was 19 I'd just returned from a year in London working as an au-pair, and began university. Ben isn't able to walk to the store alone. He's never expressed his thoughts in speech. Ridden a two-wheeler. Done hand-stands in the pool. Made a crank phone-call. Kissed a girl. Talked to a friend on the phone. He doesn't have any friends at school. He did in elementary school, but they all grew up and moved on. "I feel sad about Ben," my husband messaged me during the day. I'm sure he was thinking about what he was doing at age 19. After dropping Ben off for his trip to the bar, I lay on a table with my hand and arm (recently freed of a cast) stuck with long pins, listening to classical piano and the persistent tick of a clock, while a figurine of a Chinese girl in a blue cape with a white fan, black hair and blood-red lips gazed down at me from a shelf. I tried to stop the thoughts I was having, the politically incorrect ones, about disability. When Ben was younger, I didn't want to hear about families like ours, families whose children hadn't 'overcome' their disabilities. He's our world. But we can't give him the world we imagined for him, not a fraction of it. Did we not try hard enough? Did he not? Ben went to the bar at 5, and it's now dark, 8:45. I thought we might get a call for a pick up, letting us know that the event was too much for him. "Is Ben coming home late from his first brewsky?" "I don't know. Maybe he's playing a game of pool." "Pool? Ben's playing pool? He's going to have a hard time waking up tomorrow."
What do we mean when we talk about inclusion? For the most part, we've come to take it for granted that inclusion is always a good thing. But what is inclusion anyway? Are we there yet? How will we know when we get there? Are these even the right questions to ask?
In the past a children's rehab goal was 'community integration,' but in the last 30 years there's been a move toward using the term 'inclusion.' Even though inclusion is outlined as a goal in international human rights documents and, more locally, in our national and provincial policies and institutions, it's challenging to define what it means for children in everyday life, or how to achieve it. Most often, notions about inclusion are depicted using a circle to suggest that it's desirable to be inside the circle. It's tempting to think that inclusion means being able to access mainstream public places like schools or libraries. But research has shown that being able to physically get into these places is not enough, and that sometimes, when there are no supports in place to accommodate people with disabilities, their experience in public places can be disabling. As an occupational therapist I often observed young people who were 'included' in a mainstream classroom at their local school, but who sat at the back of the room away from other students and interacted primarily with a teaching assistant. This seating plan often happens for kids who need space for a wheelchair, a bulky speech device and a desktop computer, and who work with an assistant. Most students with this equipment accept it as a given that they can't sit in the midst of students. What I heard from youth was that they wanted more opportunities to hang out with other kids at school. They felt included in one sense, but excluded in other ways that were very important to them. So we need to critically examine what we mean by inclusion. What types of inclusion enhance participation and make students feel like they belong? What types of inclusion make students feel different and left out, even if this isn't the intended effect? Research on inclusion has shown tradeoffs when specialized schools are closed and kids with disabilities are integrated into regular schools. Families want their child to be at their local school, but they mourn the loss of a community where disability is common and positive disability identities are modelled. Very little research has looked at understanding inclusion from the perspective of children growing up with a disability, so I've chosen to make these questions the focus of my doctoral research. I'm just getting underway with my study, which will explore how youth who use augmentative and alternative communication experience being included or left out. What are the factors that lead them to feel they belong and are participating in class? I'll also consider the ways that broader notions about inclusion might impact these young people. I'd like to share some tentative ways of thinking about inclusion that I've developed for my study. These statements were developed, in part, by drawing on research based on input from people with disabilities. I'll test these working statements throughout my research, and modify them as I learn more from study participants. What do you think about these ideas?
Inclusion is more than being located in a particular place or space. Inclusion is created socially through relationships that involve people and places. This means it is fluid and constantly changing or fluctuating.
Inclusion is 'in the eye of the beholder.' This implies that individual children and youth might have very different ideas about what factors enable them to feel like they belong, and what the barriers to being part of an activity or group might be. It also means that it's difficult to objectively identify inclusion because it's primarily a subjective experience.
Inclusion isn't necessarily experienced as all or nothing. We can feel both included and excluded at the same time.
Inclusion isn't about a one-way move to include children with disabilities in mainstream places or activities. This isn't always achievable or desirable.
Many of our ideas about inclusion stem from the assumption that being in the centre of mainstream society is ideal. This tends to obstruct other ways of thinking about inclusion. It's also troubling because it suggests that it's better to be 'normal' or to try to be as normal as possible. It leads to judgments about who's in need of inclusion, and suggests that not being included in mainstream events or places is a failure. Thinking differently about inclusion involves thinking differently about disability. In particular, we need to stop thinking about disability in primarily negative ways.
I don't know if the time has come for a new word to replace inclusion but I do know that we have much to learn about how inclusion is understood, imagined and experienced by children and youth with disabilities. What types of inclusion do they desire? And in what social spaces? Gail Teachman has more than 20 years' experience as an occupational therapist at Holland Bloorview and teaches at the University of Toronto. Her research examines norms and assumptions in children's rehab in relation to youth who use augmentative and alternative communication and their families.
I'm watching snowflakes fall outside my massive window at Holland Bloorview.
One of the unique things about our newish building (2006) is floor-to-ceiling windows that let in natural sunlight—something you don't see in many hospitals.
The glass is so clean and unobstructed that I can see big fat fluffy flakes close up. Further out the churning up of so many tiny dots of snow looks like millions of frenetic stars.
What strikes me as the wind changes is how many flakes float by my window in a relatively straight path, while some rise above and others, farther away, are in a free-fall.
Children are often compared to snowflakes—each one different and unique.
But as I look out it all appears so random—the course of these snowflakes, which are carried up, which are carried along, and which fall (I realize they all eventually fall). And that's how I feel about my son with severe disabilities, when I think of him in relation to his siblings and other children. Most children are gifted at birth with the tools that will allow them to do all the regular things in life, and many come with superstar abilities across the board, allowing them to ascend in the conventional world of success. And then there are children with disabilities that touch everything, who seem to have been destined from birth for a free-fall. I'm not talking about an isolated physical disability or hearing loss, which can be worked around. I'm talking about kids who have physical disability plus hearing loss plus no speech plus fine-motor problems that limit sign plus learning problems plus health problems, plus, plus, plus. There isn't any rhyme or reason as to which child gets what. We don't start out equal and it certainly isn't just. It's World Down Syndrome Day today, but all I can think about is that 26-year-old man man with Down Syndrome, the one who sat back down in a Maryland movie theatre in January when his caregiver went outside to get the car. Robert E. Saylor was his name. When asked to leave, he refused. He was handcuffed and forced to the ground by three deputies working extra hours as mall security workers. During the scuffle he called out for his mother. He suffocated to death.
This morning a friend on Facebook posted a blog by a British mom. Two days ago she learned that her daughter's teacher was being charged with physical and emotional abuse, which included taping her daughter's wrists together, hitting her in the face with a book, and kicking her. The girl is in elementary school and has Down syndrome.
A couple of days ago there was a story about a mother who learned caregivers were beating her adult son with autism after she placed cameras in his home. I didn't want to watch the news clip, but I made myself. I just did a google search for the story and quickly gave up: I couldn't find it because there were too many stories about people with autism being beaten. There isn't really any point to this, other than to say that some kids are born so vulnerable, in so many ways, that it's hard to keep them floating.
Manuel Echevarria (left, front) was taken by child services from his family in August 2012 after a series of events that began when he was taken off Medicaid's disability coverage by a caseworker, in error, and the family lost home nursing care. Manuel, who has cerebral palsy and complex medical needs, including a g-tube and seizures, was returned to his family three months later. His parents were acquitted of neglect, but never received an apology. The family lives in Indianapolis and are pictured on a Disney holiday. I spoke with Manuel's mother Angelic. Manuel's nickname is Bear Bear.
BLOOM: Tell us what happened.
Angelic Echevarria: My husband and I were both working and Bear had 12 hours a day of nursing care. I worked during the day and my husband worked nights. Our caseworker took Manuel off traditional disability Medicaid and put him on Medicaid for a typical child. This meant we lost our nursing care and my husband's pay cheques were abruptly garnished by our hospital. We eventually lost our house and I had to resign from my job because Bear's medical needs were so great.
BLOOM: And shortly after this Manuel was hospitalized?
Angelic Echevarria: Yes, Manuel was hospitalized with a serious stomach virus for one-and-a-half weeks. The whole family was staying across the street at the Ronald McDonald house. We had lost our town house but were to move into special-needs housing in a week. The doctors and social worker had a conference to discuss Manuel's care and other issues.
BLOOM: What did they suggest?
Angelic Echevarria: They felt we needed a break because Bear's Medicaid coverage hadn't been figured out and we had no home nursing. They suggested Manuel go into a respite facility for two weeks.
He went there for the weekend but when we visited we found him by himself in a ball pit. The nurses were talking and eating in a back corner and not interacting with the young people. My son can barely turn over on his own or keep his head up. I was concerned about his safety and asked to take him home. We couldn't get in touch with the hospital social worker because it was the weekend. The respite nurse said we could take him and that they had never seen a little boy so well taken care of.
We took Bear back with us to Ronald McDonald House. We planned to drive to my parents' house in Chicago and stay there until we could get into our new home. Instead of the social worker giving us a chance to explain about the ball pit and Manuel's safety, she called on Monday morning and said child services had been called. I thought they would speak to us and listen to why we took Bear out of the respite place. But never, ever did I think they would take him away.
BLOOM: What happened next?
Angelic Echevarria: They came to Ronald McDonald house with the police and an ambulance and told us to sign a document and we got to kiss him and try to explain why he was being taken away. They took him back to the hospital. They told us it would take time for the court date but we could visit him. We had timed visits with him in a hidden part of the hospital where we were watched through glass. It was heartbreaking to be treated like a criminal. After a couple of days Manuel was taken to a new respite facility two hours away.
BLOOM: Why were you charged with neglect?
Angelic Echevarria: I had failed to listen to the doctors' orders and taken him out of respite early, and we were considered homeless, even though we were able to live with my family until our special-needs housing was ready. I was told I was a selfish mother who used the hospital for her own gain, because I had asked the social worker for parking passes and help with medical supplies. My husband and I were made to look like monsters.
BLOOM: What happened next?
Angelic Echevarria: We were out of our minds with grief. We took our older kids to their grandparents' house to live because we wanted them to be safe and happy. Lawyers told us it was important that my husband keep his job, so he and I lived in our truck so he could continue to work. I prayed very often just to keep my sanity.
BLOOM: How were you able to see Manuel if the respite facility was two hours away?
Angelic Echevarria: The facility was close to a river and they rented out log cabins, or we could pitch our tent and camp. We got there with our other children on Fridays and wouldn't leave until Monday, early morning. The camping helped us to cope because we made campfires with our kids, roasted s'mores or looked at the stars. It helped us so much to bear the pain of Manuel being right down the road and not being able to be with us. Once the staff got to know that we loved Bear they became very nice to us. They even helped to raise money so we could stay an extra night at our cabin and pitched in for toys for Bear's birthday.
BLOOM: How did you get Manuel back?
Angelic Echevarria: To get Bear back was like the fight of our lives. We had to ask for letters from his doctor in Chicago, where we used to live, and former nurses. Bear did have home nursing for a short time in Indianapolis so the supervisor who had come to my home on numerous occasions wrote a letter stating that there was no neglect of Manuel or my four older kids. Most marriages are already fragile with a special-needs child but when you have court every week and people accusing you falsely that's the most horrific thing you could do to a family. BLOOM: What impact did being in respite have on Bear?
Angelic Echevarria: Bear would cry or get very angry. This facility tried their best, there were some great women, but of course it wasn't home and he wasn't with his family so it was very hard on him.
BLOOM: How did this impact your other children?
Angelic Echevarria: My children, Jose, 12, Angelina, 11, Mariah, 9, and Amarie, 7, were very affected. They would cry for hours. We would take them to Easter Seals for SibShops to help them speak about their feelings and we're still looking into more therapy to help them.
BLOOM: How did you cope?
Angelic Echevarria: I coped by praying. Somehow I felt like Job in the Bible. I didn't understand why and how this could be happening because I feel like I'm the best Mommy ever. My husband and I would lean on each other we would cry or scream, whatever we had to do to let it out. Being able to rent a cabin to be closer to Bear on the weekends helped. My sister and best friend and godmother helped with prayers and support.
BLOOM: When Bear was allowed to come back, were you given an apology?
Angelic Echevarria: My husband and I were acquitted of neglect charges, yet we were not given an apology. We had to see the social worker at the hospital who called child services. All she said was 'You all have been through a lot' and that she was changing departments.
BLOOM: Is Manuel now on the correct Medicaid plan?
Angelic Echevarria: Yes. Now his medical bills are paid and he receives nursing services, but just for school. I am fighting to get my job back. We've changed hospitals.
BLOOM: How is Manuel doing now?
Angelic Echevarria: He's doing the best he can, but his seizures have been horrible lately. We take it one moment at a time. My little fella is a happy Bear Bear. He loves his playdough and he loves his teacher and classmates in kindergarten. He loves his sisters and brother so much. They give him tons of kisses and hugs. We learn to love each and every moment we have.
BLOOM: Why are you sharing your story?
Angelic Echevarria: I hope it inspires people and opens up discussion as to why this keeps happening to good parents. Our caseworker told us of three other families whose children were taken unnecessarily by this children's hospital. I believe a lot of good parents whose children have special needs are being targeted for no real reason. Our prosecutor said 'If you're not a certain colour, don't have a professional degree or aren't husband and wife then they don't want you to come to their hospital.' We'd like to find other families this has happened to and unite in a class-action lawsuit.
ReelAbilities is a New York film festival that gives voice to stories about people with disabilities. This Friday Willowbrook (above) is being screened. It's a disturbing account of researchers who injected active hepatitis virus into healthy children with intellectual disabilities when they were admitted to an institution as part of a medical experiment.
"...most ethicists see Willowbrook as an example of medicine run amok, in which overzealous researchers did harm to an exceptionally vulnerable population," says this recent Well blog in The New York Times.
One can only surmise that these doctors felt that children with intellectual disabilities fell outside the protections afforded children with regular IQ.
The other night I found Ben in bed, his face behind a book that was jiggling about because he was laughing so hard.
The book was The Tale of Benjamin Bunny by Beatrix Potter. It's a tiny hardcover book my dad read to me as a child. My dad was a wonderful storyteller and hearing him read was like listening to music. On the floor beside the bed was The Tale of Peter Rabbit. Ben has always loved the antics that Beatrix Potter's animals get up to. He wouldn't let me see what page he was on, but I figured it was something about Benjamin and Peter getting into trouble in Mr. McGregor's vegetable garden.
After he went to sleep I flipped through the book and came to this illustration of old Mr. Bunny (Benjamin's father) lunging at the cat who's been sitting, for five hours, on a basket under which Peter and Benjamin quiver.
Old Mr. Bunny had no opinion whatever of cats. He took a tremendous jump off the top of the wall on to the top of the cat, then cuffed it off the basket, and kicked it into the green-house, scratching off a handful of fur. The cat was too much surprised to scratch back.
That was probably the page I thought.
Ben has always loved the absurd, the over-the-top, the darkly humorous.
When I saw him that night, I couldn't imagine anyone more happy or caught up enjoying a moment.
And who am I to question that his way of life is any less valuable because of his IQ, I thought, because he's not thinking what average 18-year-olds do.
Today is the fifth year of Spread the Word to End the Word, the campaign by Special Olympics to get people to stop using the word "retard" because it's a demeaning slur against people with intellectual disabilities.
I'm tired and not a little disheartened with the arguments put forward, often by the brain elite, that when words like retard, imbecile and moron are used, the speaker doesn't have a person with intellectual disability in mind.
Come on.
Everyone knows that these words have a particular zing because they were once descriptors for people with intellectual disabilities. As the most stigmatized, hated and feared group on earth, calling someone a retard, imbecile or moron is the ultimate put-down.
I remember being asked to fill out a survey at a large children's hospital about prenatal testing. The survey was being conducted by students who were training to be genetics counsellors.
One of the questions asked whether, as a parent, I would terminate a pregnancy because the child had mental retardation and would have no quality of life.
The question was problematic because of its simplistic construction, equating low IQ with a wasteland worse than death.
High IQ is not correlated with a good and satisfying life, and neither can low IQ be assumed to suck the richness out of life.
So next time you're looking for a word to heap ridicule on someone—stop... and think—and leave people like my son alone.
Want to support the Malaika Mums sewing project and Malaika Kids special-needs school in Kenya we wrote about in BLOOM (click on issue top right). Comfort the Children International, based in Austin, Texas is participating in a 24-hour fundraiser called Amplify Austin. Go to Amplify Austin and type CTC International in the search box to support these Kenyan projects for families of children with disabilities. Open till 7 p.m. March 5. Photo by Chelsea Dee.
About a year ago, I contacted Canadian researcher and developmental pediatrician Dr. Peter Rosenbaum. I wanted to ask his advice on the pros and cons of walking in children with cerebral palsy. My son Alfie, 7 (above centre), has significant challenges because of cerebral palsy. He wants to walk, despite using what many call an abnormal pattern of movement. Alfie LOVES walking with our support or a walker. It isn't functional, we’re told, but his slow and excited steps give him a hard-to-beat feeling of independence that he may not experience when he's older. Our government-funded physios say walking is bad for Alfie's hips because his tight muscles pull him into an unusual gait. They say Alfie should spend most of his time in a seating system or wheelchair or use a standing frame (which Alfie hates). On the other hand, private physios say Alfie should have a walker because he can take steps and enjoys it. In trying to decide whether we should encourage Alfie to walk, Peter suggested I read a paper he and a colleague had written called The F-words in childhood disability: I swear this is how we should think! The F-words are function, fun, friends, family, fitness and future. The words are based on the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), which is a way of thinking about health that applies to everyone, not just those with disabilities. The ICF framework is a diagram that shows how body structure and function, activity, participation, environmental factors and personal factors are interrelated and influence a person's health. No one factor is more important than another. Peter and Dr. Jan Willem Gorter took these concepts and translated them into the simpler, family-friendly F-words, which they argue are also connected. These words convey what’s important to children with disabilities and their families in a way that I could relate to. For example, if a family is having emotional or financial problems, this can impact on a child’s ability to function and have fun. If a child isn’t able to get a key piece of technology, it has ripple effects on what a child can do. And sometimes fun is just as important a reason for doing things as function. It was this description in Peter's paper about the word function that gave us confidence to support Alfie’s walking, even if it isn't the most efficient way for him to get around: “We used to believe that from a very young age children's everyday activities… had to be done ‘normally,’” write the authors. “We have likely inhibited children's development by stopping them doing things considered to be outside the normal—literally ‘abnormally.’ One need only think of preventing children with cerebral palsy from pulling to stand and walking in a crouched gait or expecting children to communicate only with spoken language… Performance improves with practice, and hence our primary emphasis in counselling and intervention should be on promoting activity.” And in writing about the importance of fun, the paper says: “…do not worry about expecting children to do things ‘normally.’” It notes that youth with disabilities participate less in sports, hobbies or even hanging out at the mall than their peers. The simple answer is to ask children what they want to do… “It is the doing, rather than the superior level of accomplishment, that is most meaningful to most children,” they write. We had always erred on the side of “if Alfie enjoys it, then why not?” But reading these words in black and white in a research paper made us realize that it might be better for Alfie all round if he does do things—in whatever way he can. I wonder whether professionals consider the effect that function has on having fun and participating and making friends? Or the way having fun can help build abilities? The F-words, and how they’re interconnected, make sense to me, but I haven't seen the ideas applied by professionals with Alfie as much as I would have liked. In thinking about my role negotiating with service providers, I decided to create an “F-words agreement” that we would share with professionals. This laminated print-out would be Alfie's document: he owned it, and he would show it at clinic visits as a starting point for discussion. To me it represents an informal but serious pact between the child and whoever they rely on for support. I see the F-words as a minimum standard, especially when decisions about services and interventions are made. For example, under Function in Alfie's agreement it says: “I want to do stuff. It may not matter if I don't do it like everyone else.” Under Family it says: “They know me best and I trust them to do what’s best for me. Listen to them. Talk to them. Hear them. Respect them.” And under Future: “Tomorrow is what I make of today. I don’t want opportunities to pass me by. Help me achieve what I can today.” We used the agreement for the first time when Alfie needed surgery to reduce his spasticity. During a pre-op physio assessment, we shared why we thought it was important for Alfie to regain his pre-surgery skills. “But Alfie won't be able to keep up with the other children on the playground if he's walking,” one of the therapists said. I said we thought it was also up to other children to adapt their games to include Alfie. We showed them the agreement, but to our surprise, the therapists didn't respond. There was a loud silence. More recently I wrote to Alfie’s multidisciplinary team to ask for their specific feedback on the agreement, but I haven't heard anything. Being cynical, I wonder if there’s a reluctance to implement these ideas because it would commit service providers and funders to doing more? I hope other parents will create an F-words agreement with their child—one that could evolve with a child's development and interests. My initial idea was that you could issue it to your child like a passport in a plastic wallet or holder or on a keychain. The message behind the F-words is that children with disabilities have a right to a future. The future may be tomorrow, but what determines its quality is what our children do today. Now when we're told something Alfie wants to do “isn't functional,” I'm confident in my reasons for saying “Sod functional, it's fun!” And I have the evidence in the ICF to back it up. Diane Kay lives with her husband and two boys in North West England. She’s a volunteer for a charity that provides advice on special education and disability discrimination. Diane co-presented a workshop called “The F-words in childhood disability: Why is it so hard to do in the real world?” in Pisa, Italy. Her son Alfie goes to the same mainstream school as his brother Laurie, 5, with one-to one support. In addition to walking, Alfie loves swimming, music and going up and down in elevators. Watch a video of Peter explaining the F-word concepts.
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