Friday, January 29, 2010

What issues matter to you?


As the parent of a child with a disability or special needs, what type of stories or resources are you most interested in? Are there areas that you feel haven't received adequate attention or dialogue? Is there a taboo topic you'd like discussed?

Please help me ensure that BLOOM is covering issues related to parenting kids with disabilities that matter most to you as parents – and which can assist the professionals working with our kids.
Thanks! Louise

Thursday, January 28, 2010

Protecting your non-verbal child



Parents of children who don’t speak fear their child’s vulnerability. When your child is non-verbal, he can’t tell you if something bad happens at school, in the community or with a worker. Last week I received an e-mail from the mother of a four-year-old boy with autism. She wrote to tell me that while receiving ABA therapy at a private centre, inappropriate photos of her son were taken. She shares her story in the hope that by alerting others parents to the potential for abuse, she can save another family from going through a similar experience.

My son had been going there for a year and every session I would stay and wait for him. I could hear him scream through the walls and they would tell me he needs to ‘pair’ with his therapist and it’s his ‘behaviours.’ In October there were changes and we had a new therapist. Her first day with my son she came running out of the therapy session into the waiting room and asked if I had a camera. I said no and why? She asked the administrator, who said yes, take my iPhone. The therapist said: “Your son is painting, he is covered in blue paint so I want to show you” and ran out of the room. Over the next little while she returned the iPhone to its owner and I asked to see these pictures. I was in shock to see my son standing in his diaper covered in blue paint, crying. There were many pictures taken. But none of him actually painting, just of him crying with blue paint all over him. There were pictures of him being cleaned up and pictures of him naked: three full frontal photos. I felt sick to my stomach.

Does my child not have a right to privacy? When you send your child to school do you expect them to be painting in their underwear or diaper? Why would someone take pictures of a child naked? My son could have been cold for two hours, standing in his diaper. When your child is non-verbal, he can’t tell you what’s happening. The guilt I feel that I trusted this private centre with my child is unexplainable. Our local children’s aid is investigating this case and the police said that while the photos are not pornographic, they are inappropriate. No apology or explanation has been given to us by the director of the centre. I would like to educate as many parents as possible to prevent this kind of horrible occurrence from happening to another child.

Following are precautions I've learned to take in choosing a private therapy centre or daycare:

Call your local children’s aid to ask if any incidents at the facility have been reported, or if the facility has been the focus of an investigation.

Ask to see qualifications of the person working with your child.

Check references yourself. Don’t be afraid to make enquiries with the police regarding records.

Expect timely responses to your concerns and questions.

Before committing yourself to a facility, ask to speak with other parents and view the facility while in operation.

Make an unannounced visit to get a realistic view of how the place runs and the involvement of the senior staff or directors.

Be involved. Don’t take a kind smile as proof that your child is well taken care of.

If you can view your child under someone else’s care, do it.

Look for sudden changes in behaviour in your child. You know your child best.

Read contracts carefully and don’t be afraid to question.

Share information and network with other parents.

Monday, January 25, 2010

'All of life is fragile and uncertain'


I'm delighted to share a guest blog today from Amy Julia Becker, mom to Penny and William, above. Amy Julia is a writer and a student at Princeton Theological Seminary. At Thin Places she blogs about "theology, disability, children and parenting, education, and the intersection of grief and hope." I like the way she makes me think. Thanks Amy Julia! Louise

'All of life is fragile and uncertain'
by Amy Julia Becker

I remember how I felt two hours after my daughter Penny was born, when I first found out she had Down syndrome. I wracked my brain for information about this thing that had just happened to our family. All I could come up with was early death and mental retardation. The doctors didn't help much. In the hospital, we received a list of all the things that might go wrong: heart defects, leukemia, celiac disease, developmental delays.

Two years later, I'm pregnant again. Recently a colleague exclaimed, "I didn't know you were expecting!"

I grinned and patted my round belly: "Hard to miss."

"I assume you've done all the screening on this one to find out, if, you know . . . "

I tried to explain why I wasn't opting for amniocentesis, why I was uncomfortable with the prenatal testing industry in general, and why I wasn't particularly concerned about having another child with Down syndrome. She didn't seem to understand.

Penny is 27 months old. She says "no" with the gusto of any of her peers. She uses spoken and signed words to tell me what she did at school today, and the names of her friends, and what she would like for her afternoon snack. Penny loves music. She's learning her shapes and colours. She gives lots of hugs. She's also very small, and she wasn't able to walk steadily until a few months ago. She is my daughter. She is my daughter with Down syndrome.

Asking whether I am at risk for having another child with Down syndrome (statistically speaking, yes, my "risk" at age 31 being 1 in 100), is akin to asking whether I am at risk for having another child with brown hair, gorgeous green eyes, her father's hand-eye coordination, or her mother's love for books. It implies that Down syndrome is something separate from Penny, something that could be extracted if only we had the proper tools and procedures. But that extra chromosome is intrinsic to Penny's being. To take away Down syndrome is to take away Penny.

Later, I heard a report on NPR about a new ethics recommendation from the American College of Obstetricians and Gynecologists (ACOG), stating that doctors unwilling to provide abortions have an obligation to refer their patients to another physician who will provide them. The spokesperson said: "If a physician has a personal belief that deviates from evidence-based standards of care . . . they have a duty to refer patients in a timely fashion if they do not feel comfortable providing a given service."

Studies show that women who receive a prenatal diagnosis of trisomy 21 (the technical term for Down syndrome) terminate the pregnancy 85 percent of the time. Since new medical guidelines - including "evidence-based standards of care" - suggest that all women, regardless of age, be screened for trisomy 21, it is most likely that the number of prenatal diagnoses, and the number of terminated pregnancies, will increase. Evidence-based standards of care result, more often than not, in the elimination of people like my daughter from our society.

As a result, I am somewhat skeptical about the standard of care offered to these mothers. I'm skeptical, too, when "personal beliefs" are pitted against evidence, implying that a physician unwilling to perform an abortion has defied ("deviated" from) the facts. I understand that many women face unbearably difficult choices about the health of their babies. Some choose to terminate their pregnancies because they have been given information about the near certainty of physical abnormalities and high possibility of early death. Yet many also choose to terminate based on probabilities, fear and misinformation. In the case of Down syndrome, many receive incomplete and outdated data.

The most recent ACOG parent education brochure entitled "Genetic Disorders," published in 2005, defines Down syndrome as "a genetic disorder resulting from an extra copy of the 21st chromosome in which mental retardation, abnormal features of the face, and medical problems such as heart defects occur." The brochure reads the same as the brochure published in 1995; by definition, it is not up-to-date.

One has to hope that in following "evidence-based standards of care," doctors and nurses will do better by their patients than 10-year-old boilerplate. I hope they include the fact that the life expectancy of people with Down syndrome has doubled in the past 25 years, or that the average IQ of a person with Down syndrome has doubled over the course of the 20th century, or that many physical "defects" can be corrected relatively easily because of advances in medical care. (Penny had a hole in her heart, for instance, that may well have killed her a few decades ago. Now, it didn't even warrant an overnight stay in the hospital.)

I will follow my doctor's orders and have a level 2 ultrasound. I will pray that this baby's heart, lungs, brain and limbs look healthy and whole. I will try to remember what I felt when the words Down syndrome first became a part of our reality. I will try to have compassion for every person who has trouble understanding the blessing Penny is to our family.

I will also hope and pray that physicians advising women who are frightened, confused and faced with life-changing decisions will offer those women a true choice, an informed choice, a choice based on the evidence that all of life is fragile and uncertain, with potential for heartbreak, and for great joy.

This article was originally published in the Philadelphia Inquirer on July 13, 2008, with the headline: Down syndrome is a part of who my daughter is.

Born to be different


I participated in a TVO panel discussion about parenting children with special needs that's been uploaded to YouTube. It followed the airing of a British documentary called Born to be Different, which follows six families of children born with a variety of disabilities. I was surprised that my voice sometimes still cracked when I spoke about the birth of my son Ben, above, 15 years ago!

Friday, January 15, 2010

Katie's ballet dream comes true


Like many little girls, five-year-old twins Katie and Emily Suggitt wanted to dance. But until last year, Katie had to watch her sister at the ballet barre because she has cerebral palsy and can’t walk. Determined to see Katie don her own pair of pink slippers and take her place with the other dancers, mom Sarah – working with Emily’s dance school and one of Katie’s therapists – created an accessible class. Ballerina Dreams at Turning Pointe Academy of Dance in Toronto is for girls with physical disabilities. In addition to the traditional tights, leotards and frilly tutus, some dancers wear leg braces, use canes or walkers, and are assisted by high school students rolling around on stools with wheels. In the photo above, Katie waits backstage to perform at a recital with volunteer Julie Gass. I asked Sarah how she got the program up and running.

Me: What motivated you to start a ballet class for children with disabilities?

Sarah Suggitt-Nixon: Emily started ballet when she was three. At Emily’s first recital we were all in the audience, with Katie on my knee. Katie watched the other girls her age up on the stage and kept pointing to herself saying “I want to do it” and at the time I’m in tears thinking, how are we going to make this happen?

Me: How did you create the class?

Sarah Suggitt-Nixon:
Katie was having a therapy session with Barb MacDonald, her occupational therapist, and I asked her “What do you think of this idea of starting a ballet class for kids like Katie?” She said “I think it’s great to find activities that are useful from a therapy perspective, but the kids don’t think it’s therapy.” She offered to volunteer her time. We found a book called Ballerina Dreams about a class in New York for children with cerebral palsy, but in talking to the staff, it sounded like an expensive program to start. It seemed to me that we should try to find a school in Toronto that was already established and would entertain a class for these girls, so I called the director of Emily’s school at Turning Pointe. She said: “Wow, I love that idea. I’d like to figure out how to make it happen.”

Me: How does the class work?

Sarah Suggitt-Nixon: There are about six girls, aged five and six. The ballet teacher took the typical program she does and adapted it a little. Turning Pointe helped us find high-school student volunteers to be one-on-one helpers with each child. The volunteers have stools on wheels and in Katie’s case one holds her waist to help her stand up. They do a lot of coaching to remind her to reach her arms straight up over her head, or not to cross her feet or to lift her foot up. They work at the barre and work with colourful scarves to do the arm movements. Katie doesn’t use her voice device in the class, but Barb printed off some sheets so she could pick colours for different games they do in a circle. They use the same moves and music that they use in the classes for typically-developing children.

Me: How did they know how to adapt the program for each child?

Sarah Suggitt-Nixon: The occupational therapist put together a two-pager for parents to fill out to give a picture of their diagnosis and relevant information on how their little dancer moves and she met them on the first day and worked with the student volunteers. We didn’t do a lot of preparation as far as meeting with the dancers or volunteers up front. We told them “If you want to come and be a dancer, come, and if you want to come and be a volunteer, great,” and then we figured it out from there.

Me: What impact has the class had on Katie?

Sarah Suggitt-Nixon: She loves it. Saturday mornings in our house are ballet. Emily goes at 9:15 and Katie goes at 11:15. For all the girls, the biggest highlight at the beginning was putting on the outfit. Katie gets to be like every other girl. At their first recital, the director did an amazing job of not making the Ballerina Dreams class any different. She didn’t give a preamble to the class. It was just: “next up is Ballerina Dreams” and out they came in their walkers or with their volunteer. There wasn’t a dry eye in the house. After the recital they had a waiting list of high school students wanting to volunteer.

Me: What have you heard from parents of other kids in the class?

Sarah Suggitt-Nixon: “I can’t believe my little girl with special needs is doing a ballet class like her sisters or friends.” One mom told me she had been looking for this kind of program for two years. One of the girls who started in November is now taking steps, where she wasn’t before ballet. They’re ordering her a walker to use in addition to her wheelchair.

Me: How have other parents and dancers responded?

Sarah Suggitt-Nixon: You can peek through the window at the class and a lot of people stop by to watch. I heard one teenager say to her mom: “This is the class I was telling you about that I want to volunteer in. When they get more dancers, I’m next on the list to volunteer.” For many of the student volunteers it’s the first time they’ve been involved with kids with special needs and it normalizes these kids for them. They’re not different or weird. One mother said her daughter who’s going to university is now interested in looking into occupational or physical therapy as a career after working with these kids. There haven’t been any negative reactions.

Me:
What was the greatest challenge in starting the class?

Sarah Suggitt-Nixon: You know what, there wasn’t a big challenge! The studio is accessible and there are no stairs. I let families in the Bloorview School know about it, so we had dancers lined up and ready to go. Turning Pointe needed to schedule the time slot and teacher and get the volunteers. But I was very pleased at how receptive everyone was.

Ballerina Dreams was profiled in this Toronto Star article last weekend. Check out the online video. Photo above by Jamie MacDonald.

Tuesday, January 12, 2010

What makes us human?


I was hoping my agitated reaction to the New York Times' Motherlode column “Should Down syndrome be cured?” would fade, but it won’t.

The post covers research from Stanford University that shows that a drug can temporarily restore some learning and memory skills in mice with Down syndrome.

Jenn Power, a Canadian mom of twin boys with Down syndrome, said she greeted the news with tears. “I find it hard to read this article without hearing a judgment on the value of my children, children who have transformed my life and the lives of many others – for the better…In the debate surrounding disability, there is an assumption that we all agree on a definition of what is good, what is better, what is the ideal. Who decided that smarter is better? Who decided that independence takes precedence over community? Who decided that both the individual and the society are better off without Down syndrome?”

Contrary to the Motherlode headline, lead researcher Dr. Ahmad Salehi in the Contrarian notes that his findings are “far from being a cure,” but could eventually lead to greater independence in people with Down syndrome. “There are many places in the world that may not look at Down syndrome the way that Jenn does,” he writes. “For these children, finding a way to even partially restore cognition or preventing further deterioration in their learning and memory would be extremely important and helpful in their very competitive societies.”

The research (while in its infancy) sounds positive to me.

What bothers me is the way the media have framed it as a full-blown cure – as in eradication of people with Down syndrome – and the slew of reader comments that imply life with intellectual disability is somehow less than human.

“The reason it is called a disability is because it is a lack of something…that makes a complete human being," one reader noted. "That is a tragedy; it is not another equally good form of personhood.” Says another: “You'll never meet a doctor or a lawyer with Down syndrome.”

Is a good life – a happy and meaningful life – tied to brain power? Are doctors and lawyers inherently better “people?” What does it mean to be a good human being? Are we less human when our academic intelligence is limited?

Another Motherlode reader equates learning ability in people with Down syndrome to her suffering with untreated bipolar disorder. But does having a low IQ, in and of itself, cause physical and mental suffering?

I can only look to my son, Ben (in photo above with sister Lucy), who has mild mental retardation, in trying to answer this question.

It seems to me that the bulk of suffering for children and adults with low intelligence comes from being judged and excluded by others.

In Ben's case, I think he experiences anxiety and frustration, and that is a form of suffering. But for the most part I do not see his intellectual disability causing suffering.

Is he suffering when he’s laughing hysterically while playing computer games designed for younger children? Is he suffering when I pull him around on a swim noodle in the heated pool at Bloorview – or when he balances on the swim noodle himself and pretends he’s a cowboy? Is he suffering when he looks down from a height of 20 feet to see a group of children cheering his descent on the zip line at camp?

My son does have physical pain, and that is a terrible form of suffering. But I don’t believe that his intellectual disability causes him to suffer.

Years ago I was asked to fill out a survey by genetics counselling students about aborting fetuses based on disability and quality of life. It bothered me tremendously that there were questions like: “Would you terminate if you learned your child had mental retardation that would affect his quality of life?”

People with mental retardation are marginalized and discriminated against in our culture. That’s a social problem.

Does intellectual disability limit one’s ability to have a rich, joyful life? I don’t believe it does. I do believe it makes life harder – much harder – but I don’t equate a good life with an easy life.

I did like this comment on the Motherlode blog, from the mother of a child with Down syndrome: “It is hard to believe that she won’t be able to solve problems or read literature. And yet it is easy to believe that she will rush to a friend, or even a stranger, in need. Easy to believe she will bring joy and light and life. Can you live a full life without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.”

What bothered me most about the Motherlode comments was the hatred and fear that intellectual disability seems to elicit in so many otherwise educated people.

What did you think?

Friday, January 8, 2010

A blog, a film, and faith


Ellen at To the Max posted an interesting blog yesterday about choosing to have another child after having a child with special needs. Were you scared of going for kid no. 2 after having one with special needs? generated 40 moving responses and is worth a read.

Ontario parents may be interested in Born to be Different (see photo above), a British documentary airing on TVO this Sunday, January 10 at 8 p.m. The film follows the families of six children born with a variety of disabilities over a 10-year span. Sunday’s segment covers the first year and I’m delighted to be sitting on a panel afterwards to discuss it with Dr. Wendy Roberts, a developmental pediatrician at Bloorview, and Barbara Muskat, a social worker at SickKids Hospital here in Toronto.

Readers in the UK can watch the entire series at http://www.channel4.com/programmes/born-to-be-different/episode-guide.

A family minister recently contacted me to ask if I knew of a bible study for a group of parents of children with special needs. Amy Julia Becker, mom to a child with Down syndrome and a theology student who blogs at Thin Places, helped me identify these sources:

The Elizabeth M. Bogg Center on Developmental Disabilities (part of the University of Medicine and Dentistry at New Jersey) has created three faith-based publications related to autism, brain injury and other developmental disabilities.

Also suggested were:

Special Strength for Special Parents: 31 Days of Spiritual Therapy for Parents of Children with Special Needs

His Name is Joel: Searching for God in a Son’s Disability and

Resources listed at the Faith Inclusion Network.

Perhaps readers can make other suggestions.

Have a great weekend!

Tuesday, January 5, 2010

Does physical disability make a parent less fit?


There’s been a lot of discussion in the blog community this past week about the rights of disabled parents to care for their own children.

The Chicago Tribune has been following the story of Kaney O’Neill, a 31-year-old woman with quadriplegia who’s being sued by her ex-boyfriend and the father of their son Aidan, five months, for full custody, charging that her disability “greatly limits her ability to care for the minor.”

O’Neill – who has no use of her legs and limited use of her arms – worked with rehab staff for months before Aidan was born to build her physical strength and put adaptive baby equipment in place. She’s never alone with her son and has the assistance of a full-time attendant, her live-in brother, a mother who helps on weekends, and a trained service dog. A good overview of the case can be found at the New York Times’ Motherlode blog.

Still, headlines asked: Can a quadriplegic woman be a good parent?

It reminded me of a column by a single mom with cerebral palsy we ran in BLOOM eight years ago. Lisa Jones, then a health planner, was raising two daughters aged four and 10 (see photo above). She used a power wheelchair and had minimal use of her hands – perhaps not unlike O'Neill's level of physical function. This made it challenging to lift her daughters when they were babies, to support them as they began to walk, or to push a stroller. 

How did she do it? I wondered.

Lisa addressed the practical challenges of caring for her daughters' physical needs in this piece below, which I think is as relevant today.

‘I know that I’m raising really good girls’

By Lisa Jones

My philosophy is that even if I wasn’t disabled – and maybe because I am – it takes a whole village to raise a child.

My name is Lisa Jones and I’m raising two girls – Laural, 10, and Emily Grace, 4 – on my own. I think my role as a parent is to guide my daughters and help them along, but my family and friends also play a huge part. When parenting with a disability, I think it’s important to embrace the fact that we are all interdependent and we each have different skills to contribute in raising happy, healthy children.

I have cerebral palsy and work as a health planner. I use a power wheelchair and have limited use of my hands.

When I was growing up, I always knew I wanted to have children. I knew I had a lot of stuff to pass on to a child and that I could help a little person become a really good individual. I wasn’t exposed to the common stereotypes that suggest a person with a disability is somehow less of a parent, so it came as quite a shock when some of my relatives expressed these sentiments after I became pregnant with my first child.

In spite of this opposition, I believed in myself, and since my children were born, I’ve rarely dealt with attitudinal barriers. The greatest challenges I’ve faced involved caring for my girls physically during their early years. Because I have poor fine motor skills, I couldn’t easily lift my children when they were babies, support them as they began to toddle about, or push a stroller.

I met each of these challenges through problem-solving, trial and error and the fervent belief that I would be able to work something out. Many of the adaptations I came up with were based on simple ideas. For example, when Laural was born, my father built a crib with a side that slid away so that I could wheel right up to the crib. The crib was at a perfect height so that I could feed and change her there.

In order to lift Laurel, I would roll her up in a receiving blanket, then grasp the sides of the blanket and pull her onto my lap.

I couldn’t push a stroller, so in order for us to go for a walk, I figured out a way to carry Laural – who was then seven months – on my lap while I pushed my wheelchair. I made a padded apron that I would wear, and which Laural could lean against. It included a fabric strap that fit around Laural’s chest. Then I had my wheelchair repair store make an extra long seat belt that fit around Laural and me.

When Laural was first walking, I took her out wearing a harness with a long strap that I held. I would take her to enclosed playgrounds so that she could run freely without any danger of running away.

What I have found, over the years, is that my daughters are incredibly resourceful, adaptable and safety-conscious because they know that I can’t rescue them like other parents can. I’ve noticed that able-bodied parents are very protective of their children. I can’t be, so my children have become very good at self-managing. They understand – at a level far beyond any other child – that if they take a physical risk, they’re on their own. I support them by giving them the confidence that they can figure out situations and by allowing them to participate in decision-making.

For example, I remember when Laural was about 18 months, she climbed up on the back of our couch and began inching along the narrow top. I said “You better be careful, because Mom can’t get you down, and if you fall, you’ll really hurt yourself.” I couldn’t scoop her up like other parents, all I could do was sit beside the couch and talk her through it. I could see her reasoning it out, figuring out whether she could move a little further, then deciding it was a bit too scary. She pulled her legs back over the front and was able to fall safely onto the couch.

What has made the difference in my ability to raise my daughters has been the support of my family and friends. Transportation is a big issue, as I don’t drive. One of the ways my parents help out is to drive my children to school and to other activities. One of my friends picks my kids up after school and that’s her contribution to my “little village.” I do things for my girlfriend’s children in exchange, such as helping with French homework. It’s that interdependence with other people that is so essential in raising children. Everyone has different skills, but we share what we can give.

During Emily Grace’s first year, I received five hours of attendant services each day. Today, I receive two on weekdays and three to four on the weekend. Our attendants primarily meet my personal care, grocery and cooking needs, although they do help the girls with small things like braiding their hair. When the girls were young, the attendants spent more time helping them with bathing and dressing.

When Laural was a baby, it used to bother me that I couldn’t do everything for her. I missed the feeling of being able to lift my baby up easily to my shoulder, or of being able to dress her when she was tiny. What I’ve learned is not to sweat those things. I focus on what I am able to do, and I do it as often and fully as I can. I know my kids won’t grow up with a complex because I didn’t wash their hair when they were three months old, or because someone else tied their shoes. Regardless of who’s braiding their hair, they know that I’m their mother. They come to me when they’re hurt, when they want direction or when they want a hug.

I’ve always been open and honest with my daughters about my disability and talked about why I do things differently. In turn, I’ve also given them the licence to do things in their own way.

I think my disability has given my children the ability to be hugely independent, adaptable and able to reason for themselves. It’s also given them a strong sense of social justice. Laural and Emily Grace don’t see disability or diversity because they just accept that everyone does things differently.

As a parent, I’ve gained a real sense of peace, fulfillment and purpose. I know that I’m raising really good girls – not in terms of them being well-behaved, but in terms of them being good people at their core. I hope that in hearing my story, parents of children with disabilities will see that their child can have a full, rich life – one that might even include children.

Monday, January 4, 2010

The time of your life


We may only go 'round one time
As far as I can tell
It's the time of your life so live it well!

Listening to that song from A Bug’s Life is one of my best memories from Christmas. We gave Ben a CD of Pixar theme songs and he and I sat on the couch and swayed side to side to these somewhat goofy songs with such irrepressible spirit that I couldn’t help smiling.

I think Ben would make the perfect Pixar movie character – an underdog with a heart of gold and an impish, mischievous character. An unlikely hero.

Recently, I met and wrote about some people who inspire me to live my life to the fullest (click on the links to read their stories).

Lauren Daly and Nicole Flynn are elite athletes who train up to 17 hours a week as synchronized swimming duet partners. Lauren has cerebral palsy and Nicole has Down syndrome. These teenagers were a delight to interview because they’re great friends who are passionate about what they do (I even got to see a modified routine on land). They make me want to go out and try something new and not give up no matter what.

Gavin White was an avid hockey player and cyclist when his arms and legs went numb and he began falling over. Six weeks later the 16-year-old was diagnosed with an auto-immune disorder that left him in hospital for four months, paralyzed and on life-support. When he came to Bloorview for seven months of gruelling, painful rehabilitation, he couldn’t move. ‘Grace’ is the word that came to mind when I interviewed Gavin. He recently defied the odds by running with the Olympic torch.

And Louise Kublick has spent her career making swimming accessible to kids with all degrees of disability.

I salute them and wish you a Happy New Year!