Does physical disability make a parent less fit?

This just in on the case of the Mississauga parents of a new baby who both have cerebral palsy: Disabled parents allowed to keep newborn son

Says the CBC: "The parents were fighting to keep their child after social workers threatened to take the boy away unless he receives round-the-clock care from an "able-bodied attendant."

We did a story years ago about a single mom with cerebral palsy and limited hand function and her two girls. 'I know that I'm raising really good girls'

I learned a lot interviewing that mom.

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Who should be allowed to be a parent?

The Children's Aid Society of Peel has petitioned to have a baby removed from the home of a couple who have cerebral palsy, unless the couple hires a full-time, and in their words, "able-bodied" attendant.

Metro Morning's Matt Galloway spoke with Ryan Machete, who works with the Coalition for Persons with Disabilities in Unfit parents.

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Learning to fly

Learning to Fly
By Meriah Nichols

Sometimes I wonder if parenting a child with a disability -- as a parent with a disability -- is as much about logistics and tools as anything else. That with the right, bright bits of click, it's no more nor less than anything else anyone else would experience.

Let me explain myself. I am deaf -- little "d" deaf. This means that I can hear but I have what is called 'cookie bite compressed hearing.' My hearing starts at 0 decibels (essentially what a grasshopper is said to hear), goes down to 70 or so decibels (moderate-severe loss), then back to 0. At 80 decibels things become too loud. It's like the giant blue hearing monster took a big bite out of my cookie then squashed it, that's what it is. Leaving me with the oddest hearing ever -- I might not hear you say hello but I can hear someone rustling plastic bags about a mile away.

I also went through the windshield of the car when I was 4, back when seat belts were a delightful accessory and car seats for children were probably an ungerminated idea from someone yet-to-be-born. My head was spectacularly torn open -- my face is criss-crossed with scars -- and shaken up.

Added to this little sundae of disability is my cherry of vision -- I am one notch under legally blind. I wore coke-bottle glasses of the variety that were so heavy that they left permanent grooves in my nose. You name it, I was called it at school. From the more exciting 'frankenstein's wife' to the rather mundane 'scarface' and altogether unoriginal 'four-eyes.' And everything, everything in between.

It took me about 30 years to get over it. To come to a place of not only acceptance of myself, but a place of pride. I am proud of who I am, who I have chosen to become. Of my life, thus far. I am of the opinion that my scars fit my face, or that my face fits them: either way, the point is, they belong together. My hearing (or lack of), is, I feel, a blessing not to be taken lightly in the wailing face of a tongue-wagging, tantrum-throwing howling toddler. How many parents have the option that I have, of turning OFF their child, staying calm and firm with them? Truly. It is a wondrous advantage.

Thirty years. And I was in a good place. Then they told me that my second child, my (unborn) daughter was going to have Down syndrome. That, somehow miraculously resolving the diffuse fetal hydrops that she had (right along with her heart holes), she was going to come with an extra chromosome. We were told she'd be a burden for life, one that we were encouraged to terminate.

In one swoop, rather like the feeling that a bucket of ice had been dumped over my head after I went through the windshield, my 30 years of growing to a good place was gone. Utterly, completely gone. I was back to being the little girl standing there on the playground, sobbing as someone eagerly seized his advantage in mercilessly teasing me. Back to that place of wondering what, as someone had later asked, could possibly be good about me when so much was wrong?

The choice to have the moxie to have Moxie was not lightly made. What cinched it was the sudden realization -- the gut knowledge, belief, whatever it is -- that all of our paths are precisely that. Our own. Mine was mine and is not Moxie's. Her way in life will be as she makes it. The pain and misery and depression and all the rest of it that I experienced is not hers, was never hers and will not be hers.
And so. My Moxie came, complete with her extra bit to love.

The biggest hurdle for me - the one of accepting her precisely as she is -- was jumped. As a parent with disabilities, I was left with, as I have said, the logistics of disability. How to hear her when I can't hear. How to check up on her. How to remember things like all of her appointments. How to stay awake when my narcoleptic bits get triggered because I am stressed out dealing with a stupid bureaucratic system. How to deal with the seemingly endless phone calls I need to make on her behalf...when I am deaf.

Perhaps parenting is a process, much like learning to fly. If you were born with -- or acquired -- a set of wings that fly differently from your flock, well, then you need to learn how to fly with what you have. And then when you look down and see that your little chick has wings that are also different from the flock, different from yours even -- then you need to figure out how best to guide and help your chickadee.

All the way, flying with the wings you have. All the way, loving your little one as best as you can.

After designing, implementing and spending the past 8 years managing an employment program for students with disabilities at UC Berkeley, Meriah Nichols is now a full-time Mom to two: Micah (3) and Moxie (1) in the San Francisco Bay Area. She also works part time in employment coaching, as a guest editor for the Assistive Technology Coalition. She tries to work on her urban homestead every day. She can be found on her blog at doozeedad.

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C'mon Papa

Today we have a book review from Waterloo Vice-Principal Cindy Matthews. Read more about Cindy at the bottom. Thanks! Louise

C’mon Papa: Dispatches from a Dad in the Dark
by Ryan Knighton
Random House of Canada, 2010
Review by Cindy Matthews

Books about moms raising their children are a dime a dozen. There are a limited number of books from the dad’s perspective. C’Mom Papa: Dispatches from a Dad in the Dark is truly unique in the field. It’s written from the perspective of Ryan Knighton, a father who’s blind.

Ryan is the author of an earlier book, Cockeyed, a memoir of ‘going blind, growing up and getting both wrong.’ He teaches at Capilano University, writes for a host of magazines, speaks at universities and corporations, and is working on another book. According his website: ‘there's more bio, but we're too lazy to bother with it. You get the point: he's a blind guy and an over-achiever.’

C’Mom Papa is extremely funny and honest. Ryan does an insightful job of putting us in his shoes so we can navigate his life as a husband and later as a new father. Most of the story takes place in Vancouver, Canada.

Imagine moving to a new house. We’ve all been there, tripping over stuff because the place is unfamiliar and we can’t remember putting the dang things there. Now imagine you’re blind. You don’t only have to learn how to maneuver by high-stepping throughout the house, white cane tapping or groping everything in and around you, but you have to learn to navigate a brand new neighbourhood, too. Stressful? You bet. Talk about a fear-factor moment.

Eventually both Ryan and his wife, Tracy Rawa, decide to get pregnant. Unfortunately the first pregnancy is molar, causing a benign tumour. Tracy has to endure a treatment similar to the regime for ridding the body of cancer. We learn how challenging it is for Ryan to ‘watch’ his wife go through this torture. He feels helpless. He can’t do what a ‘normal’ husband would do, like drive her to appointments. The parenting journey grinds to a halt for a year after treatment to ensure a healthy uterus.

The second pregnancy is not without anxiety. Under the supervision of a midwife who happens to be Ryan’s ex-girlfriend from high school, the soon-to-be parents learn that there’s a small risk of their baby having Down syndrome. They decide to have amniocentesis. As he accompanies Tracy through the hospital corridor, Ryan distracts himself from his fears by wondering about the other people in the corridor. Are they thinking he’s bizarre because he’s wearing a t-shirt with the f-bomb plastered on it? About awaiting the results of the test, Ryan explains: “Sentimentality is not a helpful form of pretend.” After they learn the baby does not have Down syndrome, it occurs to Ryan that he and Tracy never discussed the possibility of the baby being blind. He uses a great analogy to describe waiting for news when you’re blind. He felt like he was joining all the other waiters, time measured by the clicking of knitting needles and the flip-flip-flipping of magazine pages.

The year of waiting for the birth of daughter Tess is at times torturous. “What worried me most…was that I had so little sight left that I could easily say goodbye to it before I got the chance to glimpse the tiniest bit of my son or daughter,” Ryan says. “I wanted to piece together what I could of that face before that opportunity was taken from me for good. A year of waiting could disappear my baby from me before it had even arrived.”

Before the birth, Ryan was asked if he wanted to know the sex of the baby. Knowing might help prepare him for playing with his child. From his memories of being a boy who played, he knew boy play would be rough on a blind guy. He asked his sister how and what girls played. When she was young, she says, she would play a game called ‘coma’ and she also loved collecting cigarette butts.

When the midwife asks Ryan if he wants to catch the birthing baby, he defers the duty to her. He worries that he can’t console Tracy during labour and delivery, which he compares to ‘delivering a planet out of a straw.’ Once Tess arrives in the world, I was struck by some of the practical implications of parenting a child without sight. There’s a sad, underlying revelation that Ryan is ‘more a visitor than a father,’ fearful to pick up Tess, asking his wife for permission. Near the book’s end, Ryan reveals that his job is to learn to ‘read’ his daughter, to discern which sounds she emits contain the really critical information.

Parents of newborns can relate to the changes that force them outside of themselves, giving totally to those little poopy, crying, needy people! Now imagine becoming a parent while wearing a blindfold. Envision never being able to see your child’s face, ever. Or, how do you check to see that you fully and effectively wiped your child’s bottom during a diaper change? Then picture trying to get your child to daycare on a snow-day in a city unprepared for winter’s folly. That’s Ryan’s life.

This is a highly enjoyable, funny, ‘real’ read into Ryan’s journey into the first year of fatherhood. It’s definitely a book for adults, not kids, in that throughout the book the author throws images and language that are colourful to say the least. Don’t let that stop you. Run to get a copy of this well-constructed story, written without pity as the focus. Ryan demonstrates that he can indeed ‘see’ the emerging relationship between father and child.

Cindy is a vice-principal of Section 23 (care, custody, treatment and corrections) programs in Waterloo Region in Ontario as well as an enrichment centre for children in grades 1-8. Her daughter is entering fourth-year university and has attention deficit disorder. Cindy also teaches online special-education courses for Queen’s University in Kingston. Before becoming an administrator, Cindy assisted students with autism spectrum disorder diagnoses to be integrated into classrooms in elementary and secondary schools in Waterloo Region. You can read more of Cindy’s work at www.cindymatthews.ca.

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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.

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