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A Dog Called Major

Editor's Note: Kathy Nessner-Filion works for Statistics Canada and lives in Aylmer, Quebec.

I have been totally blind since I was three years old, and this article is about a very special companion I had throughout my childhood.

When I was five years old, our family was given a German Shepherd/collie cross puppy whom we named Major. Maybe because I was five and six years younger than my older sister and brother, he became my playmate, and I guess you could say we grew up together.

Major accompanied me and my friends everywhere: to the park during the summer months, and to the outdoor skating rink and toboggan hills during the winter.

Sometimes, while we skated, Major would find a discarded hockey stick lying on the snowbank surrounding the rink and would carry it, crosswise in his mouth, out to us. He was a big and powerful dog, so the stick was at about waist-level for all of us. It seemed natural for us to take hold of each end of the hockey stick. With as many as three kids on either side of him, he would prance around the rink, pushing us along with him until he had tired of the game.

To finish, he would simply dump us into a snowbank, drop the stick and rest in the snow, until he felt like playing the game again.

When we went tobogganing, he would tirelessly accompany us up and down the hill. During one outing, the toboggan slipped and I accidentally went down the hill alone. To stop myself, I put my feet out and bent one of my legs backwards to the point where it really hurt. At least it helped to get me off the toboggan, but I lay on my back in the snow for a few minutes crying from fear and pain. My friend and Major came running down the hill to see if I was all right and while I was still lying there, I felt what I thought was my friend's hand laid gently on my chest to comfort me. When I raised my own hand to touch hers, I found it was Major's paw! Even as a child, I remember recognizing how incredibly moving that gesture was!

Somewhere around the summer I was eight years old I think, I began holding Major's collar and he would guide me around the neighbourhood. Although he had received no training, he certainly kept me on the sidewalks. One of our neighbours even told my mother that once, when there was a child's tricycle in our way, she saw him lean into me to push me to one side so that he could guide me around it. I also used to burn off my excess energy by running with him. The feelings of freedom and exhilaration I experienced when we were able to do this together were wonderful, and something I will never forget!

As the years went by, Major would accompany me during my summer holidays on my grandparents' farm, where, holding his collar, we walked (and ran) the country roads together and went on picnics with the friends I had made there.

He also knew the meaning of "home" and anywhere we were staying became "home" to him. While at my grandparents' farm, for example, or staying at various cottages in the summertime, I only needed to hold his collar and ask him to "take me Home", and he always did. One winter weekend, a girlfriend and I decided we would meet each other halfway between our houses, which were several streets apart. This was during a really bad snowstorm, but I thought I would be okay. By the time I was a number of streets and turns away from home, the snow got so deep I couldn't feel the sidewalk anymore under my feet, and all I could hear was the wind blowing the snow all around me. Suddenly, I felt completely lost. Major was with me of course and, when I began to panic and started to cry, I asked him to take me home. He spun around immediately and took me back to our front door.

Major was also there to help me through those awkward years of the early teens when it wasn't hip to hang onto your girlfriend's arm anymore. I could walk independently with him among a group of other kids and could choose to go home from where ever we were whenever I wanted.

When I left the School for the Blind at the age of sixteen to attend the high school near our home, I used to have Major guide me down the street and around the corner to my girlfriend's house, where he would "drop me off" to continue on my way to school with her. On my way home again in the afternoons, he would come running down the street as soon as he saw me, and my friend and I would go our separate ways, with Major guiding me the rest of the way home.

Although it was because of Major that my desire to have a trained guide dog was born, I am sure I allowed my relationship with him to have a negative impact on a number of my guide dog relationships when I was old enough to be trained with them. For years, unfortunately, I wanted to work only with a German shepherd, and that has not always been possible.

Major never received any formal training, but somehow, he seemed to know I needed him. Not only was he a wonderful companion, he also helped me gain some freedom and independence that, as a totally blind child, I would perhaps not have experienced.

I will always remember and miss him.

Meeting The Needs of Siblings of Kids With Disabilities

Editor's Note: This article is reprinted from Abilities Magazine, Winter 2005: www.abilities.ca

Like most parents, Lisa Bernstein of Thornhill, Ontario, juggles many demands. The difference is that much of her family's routine revolves around one member: three-year-old Tamara, who has Down syndrome. "Between speech therapy, occupational therapy, early intervention and doctors' appointments, there is not really much 'down' time," says Bernstein, "and because I spend so much time with Tamara, I have to work doubly hard to make sure that Rayna, my six-year-old, gets the same support and attention."

Bernstein is not alone. Parents of kids with disabilities devote immeasurable resources--energy, time and often money--attending to their children's needs. Their children are labelled "special," and with that in mind, parents struggle to level the playing field and access the services and supports that are required to ensure a good quality of life. In doing so, they may inadvertently sideline the needs of their other kids. In many cases, these needs are related to children's impressions of their sibling, and the way that the sibling and all the effort exerted on his or her behalf shapes the family dynamic.

Research into the impact of having a sibling with a disability is ongoing. Common issues include feelings of loss and isolation when a parent's time and attention is devoted to a sibling's disability or illness. Kids may feel confused when parents and service providers, in an effort to shield them from possible stress, do not share information about their brother or sister's challenges. They may feel further shut out if they don't have the chance to talk with peers in a similar situation.

Siblings may also over-identify with the challenge at hand, fearing that they will "catch" a disability or illness. Or, they may feel pressured to achieve in academics or sports to "make up" for their sibling's limitations. Sometimes, kids may feel guilty because they think they caused the disability or, conversely, because they were spared the challenge. These concerns can often persist into the teen years and adulthood.

Children who are asked to help care for a sibling with a disability or take on more household responsibilities than their peers may feel overwhelmed or compelled to grow up too fast. This is particularly true of older sisters, according to the Arch National Resource Center of the U.S. Department of Health and Human Services, which reports that while both brothers and sisters help to care for children with developmental disabilities, studies have shown that older sisters, especially, have increased care-giving responsibilities. They tend to participate less in their own activities outside the home and have more conflict with the child who has the disability.

How can parents ensure that all of their children feel special when some of them have been labelled special? The answer often relates to how the child with a disability is regarded and treated within the family. If the disability is characterized negatively, or treated with kid gloves, the other children in the household are likely to react with a sense of hostility, fear and even disdain. According to Debby Shimmerman of Toronto, Ontario, teacher and founder of Educare, a program for children with learning challenges, all children have strengths and struggles. "It is important for parents to normalize their child's challenges by presenting them in this context." For instance, a child with a disability may struggle with fine motor skills, but may have a wonderful sense of humour. And while a typically developing child may not have any obvious challenges, things like shyness, impatience, and even something as mundane as struggling to tie one's shoes can help to characterize all challenges, frustrations and delays as normal and acceptable. If every child in the family has an opportunity to address their challenges with support and attention from their parents, there will likely be less antipathy toward their sibling with a disability.

Similarly, it is important for parents to create a forum for all of their kids' strengths and talents to be highlighted in the family. Bernstein says, "Sometimes, without noticing, Tamara's accomplishments attract more attention and accolades because she has worked so hard to reach each milestone. However, with our other daughter, we take for granted that she's going to read, write, run, jump and progress at school. Sometimes, she doesn't receive the same positive reinforcement." Feedback helps to build a sense of pride and confidence. Although it may seem that typically developing kids learn skills and master tasks easily, they actually exert a great deal of energy to do so.

Sometimes, kids measure their own uniqueness against their sibling's, and often, these observations are derived from their parents' comments and judgments. "It was not until my second child was born and started cruising through the developmental milestones that I really understood the impact of my firstborn's delays," says Pearl Braddock of Toronto, Ontario, a mom of three. Her son has cerebral palsy. Often, parents of children with disabilities refer to their normally developing children as a barometer for progress. This can generate feelings of ambivalence in siblings of kids with disabilities. "I was delighted that my daughter was learning with such ease, but in some ways, her evolution highlighted her brother's limitations," explains Braddock. This tendency to compare leaves children with the impression that their growth and development is connected to that of their sibling with a disability, and it can arouse feelings of guilt. "Parents should guard against comparisons," advises Shimmerman. "It is essential that each child's development be treated as precious and unique and normal, even if, by comparison, it is not."

Especially because children with a disability can require more time and attention, parents should set aside time each week for each child. "Even five minutes each day of 'alone time' will help a typically developing child feel as though their interests and needs are just as important as their brother or sister's," says Shimmerman. Take the time to ask what they are learning in school, what they did at recess, or what they like about their favourite cartoon.

Finally, it is important to acknowledge and embrace the gifts and opportunities that children with a disability can bring to their siblings' lives. According to the Arch National Resource Center, these include a heightened awareness and insight about the human condition; a sense of maturity and responsibility from successfully coping with a sibling's needs; pride in their sibling's learning and achievement; loyalty toward siblings and families; and appreciation for their own good health and welfare. These positive lessons can go a long way in helping a child to embrace all their sibling has to offer, rather than seeing only challenges.

"My brother taught me the meaning of unconditional love," says Naomi Ben-Aroya, MSW, who now, as an adult, can reflect on her relationship with her brother David, who had developmental delays. "So much of who I am today can be attributed to my relationship with him." She credits their parents for normalizing David's involvement in their lives. "My parents made my siblings and I all feel 'special' and they did not focus on the fact that my brother was different. We were all treated as individuals with our own specific needs." Ben-Aroya feels that having David in her life influenced her professional choice to help others, and also that of her older sister, who became a doctor.

Every child wants to feel valued. A formal diagnosis in one child need not diminish the exceptionality of another. With this insight, parents can ensure that all of their kids gain a sense of confidence and pride in their achievements. "I've realized that my younger daughter's very typical, two-year-old delight at her messy finger painting is no less remarkable or worthy of praise than when her older brother masters a skill with which he has been struggling for months," says Braddock. "I've learned to truly appreciate my daughter's milestones even though I can essentially take for granted that she will reach them."

Tips for Parents

  • Expose your children to differences so that they realize they are more common than rare. Socialize with families who have children with disabilities; find relevant play groups, get-togethers and programs (for example, if your child has autism, contact autism groups in your city).

  • Help siblings understand your child's disability within the context of difference in general. For instance, if your daughter asks, "Why can't Andrew talk even though he is five?", compare Andrew's speech delay to something your daughter struggles with. You might say, "Well, you know how it's hard for you to do math? Everyone struggles with something, and Andy struggles with speaking." You might use yourself as an example by offering, "I can't follow a map well. That's why I'm always getting lost; that's my struggle."

  • Create opportunities for your child with special needs to support siblings in their interests and activities. Ask your child with a disability to make a banner to cheer on her brother at a soccer game, or help her bake a cake for her sister's birthday.

  • Find activities that all of your children can enjoy, such as hikes, picnics, board games or crafts.

  • Make sure that your entire family is supportive. Relatives should embrace each child's gifts, talents and qualities.

  • Read books with your kids that highlight characters with a disability, such as We'll Paint the Octopus Red by Stephanie Stuve-Bodeen and Pam DeVito (Monarch Books); Are You Alone on Purpose? by Nancy Werlin (Thomas Allen); Our Brother Has Down's Syndrome by Shelley Cairo, et al (Annick Press) and Special Brothers and Sisters, edited by Annette Hames and Monica McCaffrey (Jessica Kingsley).

Ruth Zive is a writer and non-profit consultant who lives in Toronto, Ontario, with her husband and five children. Her eight-year-old daughter, Julia, has

Down syndrome. Zive has written for Flare, EPregnancy and Dance Teacher. She also operates an online speechwriting business, SpeechWhiz (www.speechwhiz.com (opens in a new window)).

Early Childcare Techniques of One Blind Mother

Editor's Note: Kathy Nessner-Filion works for Statistics Canada and lives in Aylmer, Quebec.

If there are any books written for blind parents, by blind parents, I am not aware of them. The purpose of this article, therefore, is to share some of my experiences of how I, as one of many blind parents across this country, figured out some practical techniques for raising young children.

Our first child, Philip, was born in 1984 and our second, Alena, in 1987. Since my husband and I had very little experience in caring for babies, we made as many preparations as we could during my first pregnancy. Together, we attended Pre-Natal classes and read as much material as we could. We bought a couple of sleepers and a package of disposable diapers for newborns and, using an old doll of mine as a model, we practiced putting the diaper on the doll and dressing it in one of the sleepers. This proved to be a really useful exercise for me.

Not all the practice or reading in the world, however, could prepare me for the overwhelming joy, wonder and love I felt when I held my children for the first time. Probably like all new mothers, I examined their little faces, their fragile little arms and legs, and their tiny fingers and toes. The only difference between myself and most new mothers, I suppose, was that I did this all by touch. Furthermore, once I brought my babies home, I had to figure out some alternative techniques for caring for them.

Both of our children shared our room until they were a little over a year old, as I felt more secure knowing my babies were as close to me as possible while we all slept. When they were a year or so, the crib and change table were moved into another bedroom because of my problem getting a decent night's sleep. I soon learned that, if I could maintain a state of semi-consciousness while I changed and nursed them during the night, sleep often returned quite easily. During more serious bouts of insomnia, I find that my orientation and mobility, as well as my ability to concentrate, are severely impaired, which is serious enough for myself as a totally blind person, but more worrisome when there are tiny babies under one's care.

As with all tasks, preparing a work area and having the necessary tools immediately on hand are very important--and probably more so when one is a blind parent with a very young baby. Changing a baby's diaper, for example, is often a rather messy business for anyone. As a blind mom, some extra precautions were quite helpful to me. On the two shelves below the change table, for instance, I made sure I had a bowl that I could fill with water if needed, change pads, a bar of baby soap, baby facecloths and towels, diapers ready for use, Baby Wipes, a box of Kleenex, a tin of Penitin cream and extra clothing, if there was enough room. A covered diaper pail was also placed beside the change table, where I could easily reach it.

Through trial and error, I learned to change a diaper with a minimal amount of mess, and was usually able to keep diaper rash at bay. Another important thing I learned was to make sure the dirty diapers were placed in the closed diaper pail as soon as possible. As gross as this may sound, some guide dogs find dirty diapers very interesting. Thinking that you might be able to put the diaper into the pail after you answer the door or the phone, for example, is not a good idea. It is best to clean baby and the entire change table area first before doing anything else.

When bathing my children during the first few months, I found it much easier to use the regular bathtub than the baby bath that came with the change table. I would place a facecloth or hand towel on the bottom of the tub so that the baby wouldn't slip, fill the tub with lukewarm water, just enough to cover their bodies, and holding their head and neck just above the water with my left hand, I would wash them with my right. Once they were able to sit up more independently, I learned quickly that I could not turn away from the tub for even a few seconds. I did this once, and Alena fell face-first into the water. I never made this mistake again!

When my children were able to eat solid food, spoon-feeding them was, for me, another challenge as a blind mother. I made sure they wore their larger bibs and, in at least two of our homes where there was wall-to-wall carpeting, I put a square plastic sheet under the highchair to protect the carpet. The plastic extended out maybe two to three feet on each side. Now that little hands could reach and grab things (and swipe them right off the highchair tray!), I also had the food jar or bowl out of reach on the kitchen table. The trick was to get some food on the spoon, bring it towards the baby without spilling its contents, and introduce it to the mouth. Since I have never been very good at holding things straight so stuff will not spill, the plastic sheeting on the floor was there to protect the carpet from me as much as from Philip and Alena!

Holding the spoon in one hand, I used my free hand to find the baby's cheek and turn his or her head towards the front of the highchair, and also towards the oncoming spoon. I would not chase them around the highchair; they had to come to the spoon, which I held over their tray. If they wanted the food, they very soon learned to turn towards me and let me slip the food into their mouths. In a short time, both babies actually guided my hand, and soon I was able to place the dish of food on their tray for them to eat independently.

I also learned some general but very useful tips. Babies quite regularly spit up, and they also slobber a good deal as their teeth are coming in. I had a good supply of bibs that I kept on Philip and Alena all day. When one was dirtied, I removed it and replaced it with another. In most cases, this prevented me from needing to change their clothing so often. To protect my own clothing, I always laid a receiving blanket or a small towel over my shoulder when I was carrying them in my arms.

Receiving blankets were also one of the important items to be kept in their diaper bag when we were shopping, travelling or visiting friends. When they became hungry, I was able to lay the blanket over my shoulder and nurse them under it. People knew what I was doing, of course, but all they could really see were the baby's feet. I realize there are many opinions on nursing babies in public, but this method is the one that made me feel most comfortable, and Philip and Alena do not seem to have suffered for it.

When my children were young, I was not aware of any accessible thermometers, so I learned to find out if they had a fever by putting my lips on the top of their heads when they were babies, and when they had more hair, by touching my lips to their foreheads. I also found ways of having medicine applicators notched so that I could tell if I had the correct amount when drawing the liquid from the bottle.

Scraped knees and elbows and a few deeper cuts were as common an occurrence in our home, I imagine, as they are in families with two sighted parents. The best way I found to manage these situations was to get the child into the bathroom as quickly as possible and to calm him or her down enough so that they could take my hand and show me where the injury was. In this way, by touching it as gently as I could, I was able to figure out just how serious it was and usually how large a bandage I would need. Even while crying and screaming, they were always able to tell me how much it was bleeding and to help me trace the size of the wound with my fingers. Then it was a reasonably simple matter of cleaning the area and putting antibiotic ointment onto the pad of the bandage. I then asked them to guide my hands to the injury so that together we could cover it properly with the bandage. I believe this helped them to concentrate on other things instead of the pain.

For reading stories to my children, I was able to purchase and borrow a number of print/braille books and, in fact, I have kept a few of them for sentimental reasons--and for reading to my grandchildren, if I should have any!

If I needed to leave the house and my husband was unavailable to help, I would carry the kids in a snugly on my front when they were tiny, and in a carrier on my back when they were older. By the time Alena was able to sit in the back carrier, Philip was four years old and able to hold my right hand when we went out to do errands, while I held my guide dog's harness with my left.

My marriage to my children's father ended when Philip was eight years old and Alena was five. He is a sighted man. Driving the kids to Beavers, Cubs and dance classes, and helping me to get the weekly groceries were all ways in which his help made my life easier. When I became a single parent, it was important to organize my life in a different way. Although each of us had both children on numerous occasions, Philip lived mainly with his father and Alena lived primarily with me. Apart from those times when I could arrange rides for her, Alena became accustomed to travelling to and from appointments, ballet and art classes, and to Brownies with me on foot or on public transit.

Shopping trips had to be well organized and well timed, as, like most single parents, I no longer had another parent to fall back on for childcare when I left the house. I had an arrangement with a couple of grocery stores where I made a list of the items I needed, faxed it to the store, and then went with my guide dog and bundle buggy to pick up the order later the same day. This was a method that generally worked very well for me with large orders, and one I preferred.

When Alena began school, I established the best working relationship I could with the principal and her teachers. A good deal of print information came home in her backpack that she could not read to me, and I often had to take it back to the school to be read or have it explained over the phone. Volunteer readers who helped me with my mail were able to assist me to a certain degree with school-related correspondence but since it became clear to me that Alena needed some extra help with reading and math, very soon I needed the school's assistance to find a tutor. When this was arranged, her schoolwork improved.

The school years presented me with challenges quite different from those I experienced at home when my children were very young, but these are best explained another time.

Alena is now 19 years old and is attending her second year at the University of Ottawa's School of Management. She lives with me and my second husband. Philip is 22 and lives in Edmonton, Alberta, where his father also resides. He is the Assistant Manager of a store in West Edmonton Mall, does some contract work for Travel Alberta, and also some modeling for the fashion section of an Edmonton newspaper.

Nana Cannot See Very Well

Editor's Note: Beryl Williams is the NFB:AE\'s former 1st Vice President. She lives in Saskatoon, Saskatchewan.

Becoming grandparents is something all parents contemplate periodically, and then it becomes reality!

The long awaited arrival brings a variety of emotions including relief, pride, joy and wonder; for me, there was also apprehension. I wanted to have an active role despite the limitations that blindness might present, but how would I gain the necessary self-trust and confidence to have meaningful and fulfilling involvement with my granddaughter, along with any other little ones to come in the future?

After the initial stages of adjustment by all, especially the new parents, I was entrusted with short periods of babysitting, which presented no immediate problems or anxieties. The time between feedings was usually taken up with the baby sleeping, interrupted only by occasional fussing and diaper changing. As baby Alice developed, however, her natural curiosity soon began to expand the boundaries of her environment, and my role became more challenging.

As anyone with personal experience caring for infants knows only too well, it is necessary to be constantly alert and aware of their every movement. This presents a definite challenge to someone unable to keep a sharp eye on their charge. Monitoring requires 100% awareness, and lack of sight demands being at hand's reach at all times.

Children's instinctive curiosity motivates mobility sooner than is good for their safety, and it is imperative to create a hazard-free environment. While it is virtually impossible to avoid all the potential disasters quietly lurking around every corner or behind every door, using common sense, child-proof safety techniques can guard against obvious dangers, making child care a more relaxed occupation for all concerned. This is true for anyone but particularly so if one is not able to keep a visual check.

I have not taken on the responsibility of outdoor activities beyond our fenced garden or neighbourhood sidewalk yet; I am more at ease in a familiar setting, where the comfort level is almost up to par with that of sighted family members. There will be lots of opportunity for venturing further afield once a strong mutual understanding and respect of limitations and boundaries has developed. I am proving to myself and family members that, despite my limited visual acuity, I am more than capable and responsible to be in sole charge of my grandchildren.

I do miss participating in visual activities like drawing, painting, crafts, looking at and reading picture books; nevertheless, there are many ways I can compensate. Traditional and improvisational storytelling, nursery rhymes and games, along with a wealth of songs, all provide wonderful quality time together and opportunities for sharing.

Baking and cooking are other popular activities although things can get a little hectic now that there are two little assistants dragging over stools as soon as they notice I am about to start something. The children are also learning that certain things are out of bounds, particularly around the stovetop burners.

I believe my greatest contribution is the quality time we share talking and listening together, which certainly can never be diminished or compromised by my lack of sight. I trust there are some very positive images and attitudes being absorbed by these children, which will remain with them forever. Their understanding is already beyond their years. They see nothing unusual about Nana seeing and doing things in a different way. As Alice often remarks, "That is because you cannot see very well, isn't it Nana?"

Naturally, there are times when I wish I could see. Sight would allow me greater freedom to do many more activities, but there is far too much joy and happiness at hand to cherish and little gained by dwelling on the negative. I am reassured by the confidence and trust that are enabling me to be the Nana I always hoped I'd be.

I now have four grandchildren, on whom I can lavish all my affections and indulgences while developing and building a strong and lifelong relationship with the next generation. I believe I can enrich the lives of all my grandchildren. As time passes, all too quickly, their memories of times spent together with Nana will be happy ones.

Blind Couple Living in a Sighted World

Editor's Note: Wasif Bhatti and Sue Neveu-Bhatti live in Windsor, Ontario.

We are a couple with low vision, who have two daughters--Mikayla who is nine and Jessica who is 13 months old--both of whom have sight. Sometimes the family life can be a challenge.

Wasif works as a lunchtime supervisor for grades six to eight at a local school, where the monitors work in pairs so if one misses something, then the other might see what the youth are doing. He has also been volunteering as a Cub leader with Scouts Canada for six years.

Sue is an office volunteer for the Canadian National Institute for the Blind, but right now she coordinates the other volunteers from home while she is on extended leave with Jessica. Sue had a guide dog for seven years until Mikayla was born and she found it difficult to push a stroller and work the dog at the same time. Now, she uses a cane when going out.

Sue does a large part of taking care of Jessica, as Wasif sometimes has difficulty. She feeds, bathes, dresses and changes her, while Wasif feeds the baby, gives her bottles, and plays with her. Mikayla is also a big help with her sister, sometimes helping Wasif to change Jessica.

Mikayla is in grade four. When she gets homework, we help her as most parents help their children. Sue has a closed circuit television (CCTV), which she uses to read Mikayla\'s homework.

But she also uses it for other things like reading books to the girls, reading mail, medicine bottles and recipes. When using the stove, we have raised dots on the control panel at certain temperatures so we know where to put the dial. We also have raised dots on certain buttons for the microwave and the washer and dryer.

We usually shop for our own groceries, with Wasif picking up the odd item during the week on his way home from work. Sometimes Sue\'s mom will help.

We do miss some things when cleaning. Recently, we bought a vacuum that works both on the floor and carpet, and we use it to sweep the floor and also to clean up when Jessica throws her food.

As vision-impaired parents, some of our fears are the kids choking, falling on the stairs, and getting away from us in stores.

When our first child was little and at walking age, Sue got a waist harness and used it in stores, out on the street, and in large open areas where traffic was a constant worry. She got some major reactions from the sighted world, saying that she was cruel to her child to keep her on a leash like a dog.

But the harness was for Mikayla\'s own safety.

We keep a close eye on Jess now that she is walking. She has learned that her world is getting bigger, and she wants to explore it. She is getting into everything, and we are always picking up after her.

But that is what parents do for their kids at this age.

We have not heard many bad remarks from the public, but some other vision-impaired people we know who are likewise raising children have also had sighted people make negative comments.

They say that blind couples should not be raising any children. Our question to these sighted people is: "If a blind person said the same thing to you, how would you react?"

We are the same as any married couple. We just do some things a little differently.

Mom Was My Special Friend

Editor's Note: Penny Leclair was elected 1st Vice President of the NFB:AE at our 2004 annual general meeting in Saskatoon. She is married and lives in Ottawa, Ontario.

Mom gave birth to twins three months premature. I was not expected to live, as my brother weighed more than I did. After two days, however, Kenny died.

Mom had been urged to name her twins soon, as they predicted that both children would die. She named me Penny, and the boy was named after my father, Ken. Mom wanted the names to rhyme--Kenny and Penny. Mary was my second name, after a nun. Since I wasn't expected to live, it seemed like the right thing to do.

Mom's little daughter lived. I was two pounds, twelve ounces at birth. In 1951, this was considered a very small baby.

At six months I was diagnosed as being blind--almost totally blind. It was a difficult time for mom--she didn't have a support group, she knew nothing of blindness.

I beat the odds--that counted for a lot! My nature was to be included in all that my sister did, and later with the addition of two brothers, I continued to insist on doing what they did. I depended on mom more than the other family members, but I also had a streak of stubbornness to not be different from all other neighbourhood children.

Mom was protective of me, yet I would not be held back from doing what others did. Over the years I grew to be an outgoing lady. Mom was always there to provide me with feedback, all the visual things others received by looking in a mirror. She was my mirror, telling me what looked good, when clothing was stained and what the styles were. She was my contact for knowing if I fit into the seasons, that I looked my best--something all women want to know.

After I got married and had a baby, mom was a big part of my life. She started giving me feedback about my son too--when his pants were too short, when his clothing was stained. She continued to be that mirror.

We had a close relationship. I had independence, yet felt supported by her closeness in my life.

Mom had a hearing disability. She started to have difficulty understanding speech, even with hearing aids. She couldn't use the phone, and began to withdraw from the community. I tried to encourage mom to learn sign language, but she was of a generation where sign language was not understood, and people who are deaf often were considered dumb as well, dumb in that they couldn't speak. For those who heard that word dumb, it was more of a mental disability. So mom was not willing to learn sign language.

I became her interpreter. Although I had no sight, I helped her with important tasks. Going to doctors. The hairdresser. Everything. I tried to lesson the isolation her disability was causing.

We had a mutually supportive relationship then because we both were dependent on one another. I enjoyed being with mom. It wasn't the usual mother-daughter relationship. It was more of a friendship. I never felt that I was doing a duty. I was helping in a way that I knew was important, and I enjoyed her help too--that reliable mirror of mine.

As the years passed, she became sick and depended on me more and more. My friend was slipping away into the fall of her life.

I inherited her hearing disability. She saw I was struggling to hear others, and I often misunderstood people. It was mom who helped me through the denial stage, and it was mom who demanded to know why I didn't use a hearing aid.

How could I continue in denial when mom was giving me feedback? From the love of this friend, I learned to cope with the disability of deafness.

I don't think anyone had understood my initial inability to accept deafness as being my reality, but mom knew the extent to which my hearing assisted me. Without sight I depended on hearing for so many things. She understood my denial, and she wasn't angry. She presented my reality to me with all the respect of a true friend.

I lost parts of our friendship as mom declined. We couldn't go out together, stopped shopping for clothing, and there were no more visits to my home to help spray stains. When I came dressed in something she had helped me buy, we talked of that particular outing. This always sparked memories. Our visits had a quality to them because we shared more than most mothers and daughters share.

Then mom declined more, and she no longer recognize me. I felt lost. She had become very thin, and even hugging her seemed different. When mom died, the loss wasn't as great because I lost my friend gradually.

My mother remained someone I knew as a special friend. Our disabilities brought a special need to our relationship. I knew mom's abilities, and she knew mine. What we could do for one another was more important than our disabilities. We put our trust and love into this special bond.

Mentor, Mentee and Mom Makes Three

Editor's Note: Here is an example of how the NFB:AE's Mentorship Program can provide an excellent experience for all involved, including the mentee parent. Joyce and Sarah Mainland and Denise Sanders all live in Kelowna, British Columbia, where they are active in the NFB:AE's Central Okanagan Chapter. *Image: From left to right: Denise Sanders (mentor) with her dog, Trixie, Joyce Mainland (mom) and Sarah Mainland (mentee) swimming in Okanagan Lake.

Sarah:

I first met my mentor, Denise, at one of the chapter meetings of the NFB:AE. That was seven years ago when I was in grade eight.

She invited me to her house for a sleepover, where we talked, listened to music and ate junk food. The next day Denise and I took the bus to meet my mother. Denise is an excellent traveller, and all the bus drivers seem to know her.

Although I had to move away for four years, we always kept in contact with each other. Now that I am back living in the same city, we are spending more time with each other again. We meet for coffee, and I go to her place to stay overnight once in a while. At her house we sometimes cook dinner or bake cakes.

Denise is great at explaining things and encouraging me to do stuff on my own. I know that if I needed someone to talk to or someone I can depend on, I can call on Denise. I like being with Denise. She is lots of fun and full of positive energy and laughs a lot.

I am so lucky to have Denise as my mentor.

Joyce:

I remember when Denise first approached me to ask if it would be all right to have Sarah over to her house for a visit. I didn?t know Denise too well then, but it was the first time anyone actually volunteered to take my daughter to do anything. I had a good feeling about Denise right from the start, and I am so glad it has turned out so well.

I have always said, lovingly, that Sarah is somewhat of a puzzle coming together and sometimes the pieces just don?t seem to fit. When these times arise, Denise is always willing to listen to my concerns and offer her insight and hindsight. I get a real kick out of watching Denise attempt to figure out the puzzle! What patience!

Denise comes up with some really great strategies and backs me up when I need it. It is true what they say about the willingness of kids to jump through hoops for someone other than their parents--this is so true of Sarah.

Now that Sarah is an adult, her relationship with Denise is as a trusted and respected friend. Denise is an excellent role model and mentor for Sarah, but she has been an excellent resource for me as a parent, not to mention a valued friend.

Denise:

During the past seven years, Sarah and I have developedwhat I would call a mentor/mentee friendship. We have experienced many things together such as cleaning house, folding clothes, working on the abacus and just sitting around having chit-chats. I try to balance our visits by spending some time working on a skillas well as being a friend with whom to have fun.

As a mentor, I find it very interesting trying to discover how I can teach Sarah. I have discovered that we all learn in different ways, and I enjoy the challenge of exploring how to explain tasks to Sarah in a way that is the easiest for her to grasp.

Joyce is a very supportive mom, and she is always available to brainstorm new ideas of how I can be of assistance to her daughter.

This mentoring friendship has been a wonderful experience for me, and I look forward to exploring new areas with Sarah.

Some Thoughts on Being Married to a Sighted Partner

Editor's Note: Editor's Note: Rajesh Malik lives in Montreal, Quebec.

Being blind and functioning in a world dominated by visual cues, I always thought life would be easier with a sighted partner than with a mate who was blind.

I am quite used to dealing with day-to-day challenges that blindness brings, and so I thought that perhaps being married to someone with full vision would render those challenges somewhat easier to tackle, and would make child rearing easier as well. After almost five years of co-habitation with a sighted person, I am still of this opinion, but it is no exaggeration that having to live with someone with sight does require constant work.

About six years ago, I met and married my wife, Kamal, in India. We have two children together; one is a toddler son and the other an infant daughter of about seven months. Since the beginning of our married life, my blindness has not played a major role in our relationship, though both of us have had to adapt to each other, Kamal to my lack of vision and I to living full-time with a sighted person. Whenever an issue arises relating to my blindness, we are usually able to work out satisfactory solutions. At the same time, however, ongoing negotiations take place, and we require continuous work in a few areas.

When we first began our life together, Kamal was quite nervous about letting me handle such tasks as crossing busy streets by myself. She also wanted to read all of my documents to me, including the mail, work-related papers, etc. I gently explained to her that I had spent many years living alone and was quite capable of performing these tasks. In addition, I mentioned that I wanted to retain my independent living skills, and did not feel comfortable if someone was watching over me constantly. Thankfully, Kamal proved quite responsive to my explanations, and we did not have to revisit these problems again.

Some other issues have not proven to be so easy to resolve, however.

Having lived as a bachelor for well over a decade, I had established my habits and had set up an apartment the way I liked it. For example, my living room was arranged so that all the sofas and chairs were placed against the walls, and there was nothing in the centre of the room. The walls in the apartment were completely bare, as I had no interest in pictures, paintings, or any other items of decoration. When I got married, I knew many things would change and that I would have to make several concessions in the way my living quarters were setup. To start, I thought I would leave it up to Kamal to look after how she chose to decorate the house. If she liked what she did with it, I would have no problems as long as I could get around in the house without bumping into things.

When it came to arranging the furniture in the living room, this is where we had some disagreements. She wanted to have a table in the middle of the living room because, she argued, it looked nice. I pointed out that I would probably receive many bangs on the knees from the table in the centre of the room.

But her belief was that, if I could avoid collisions while travelling outside and in the other parts of the house, I should be able to do the same in the living room. I repeated my objections to her plans, emphasizing that I wanted to feel relaxed in my own house and did not always want to worry about going around the furniture. Eventually, she gave in, but I am not sure whether it was because she simply wanted the argument to end or whether she truly appreciated my position!

Actually, I constantly have to be cautious about big and small objects strewn in many areas of our home, not because of my wife but because of my 33-month-old son, who still does not know that his father is blind.

Our refrigerator is another source of mild consternation for me. I find items of interest in the fridge on a trial and error basis. When I lived alone,

I knew where everything was kept, and all I had to do was reach into the fridge. Now the story is entirely different. Smelling food items, feeling their textures, and shaking containers are some of my secret strategies for locating what I want. To tell you the truth, I have never asked Kamal to keep any kind of order in the fridge; rather, I have simply learned to live with chaos!

In other areas of our life together where blindness could matter, it does not. Kamal is very adaptable. She is an excellent sighted guide, does not mind reading for me, provided our children allow us the time. While looking for a home, we visited numerous houses, and I relied on Kamal to point out those details of which I could not gain direct access. We have travelled together by bus, plane and train to various parts of North America, and blindness has not been an issue, for the most part. Things might change, however, when she begins to drive a car, and I become her driving companion and offer her directions!

She has just obtained her drivers license, and we will probably buy a car in the near future.

From my standpoint, being married to a sighted mate is preferable, despite the challenges that the relationship requires one to meet. This is not to suggest that a meaningful and satisfactory relationship is not possible with a partner who is blind. Sharing one's life with a partner is a complicated issue, one requiring much thought and deliberation, as well as the right chemistry, regardless of one's level of vision. I have only tried to present a picture of what it has been like for me to live with a sighted partner.

Finally, you must be saying, But what about your wife? What is her experience of living with a blind person?Undoubtedly, this is an excellent question, but for that story, you will have to wait for a future edition of the Canadian Blind Monitor!

Out of Sight

Editor's Note: Editor's Note: Lisa McGauley lives in White Rock, British Columbia, and is a clinical social worker in psychiatry.

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success Achieved.

--Helen Adams Keller

Don't let your kids out of your sight.Is this not the decree of most parenting magazines? But what happens when the parent is out of sight, blind or vision-impaired?

Snugglies keep newborns close. Playpens keep your child in one location. Highchairs provide constant confinement. Backpacks work to keep growing infants near. Harnesses and wrist attachments work to keep toddlers close. But what happens when the terrible two's hit? The first independent game of chase outside the familiarity of home? The first time the shoes with the carefully laced bells are kicked off? When a child chooses not to answer? What is a blind parent to do? Panic!

But after that, some clear decisions about what places are secure must be made. This can be done through trial and error. Sighted friends and family can help scope out the neighbourhood before you venture out. With my son, he was so active and busy that I arranged to meet parents with similar aged kids in the park after trying to gut it out myself. Trailing around brightly coloured gym equipment, across suspension bridges and under climbing apparatus only to find he had gone elsewhere.Over here mommy.The hours were exhausting. He was constantly out of sight. I felt more like a nap after a short outing to the park than he did. Sighted parents know what this feels like momentarily. Blind parents know what this feels like every time we let go of our Child's hand. My daughter stayed closer. I also knew the places to take her. But I was a rookie parent with my son. A rookie blind parent.

As our children grow and explore their world, the challenge increases. Is parenting different as a blind person? The logistics are, but the lessons and love are the same.

My children are now 9 and 14. Their friends know to describe their new haircuts or take my hand and say, Check out my new hair.My children and their friends are comfortable with me walking into the room and asking, Is anyone in here?I can't see well enough to distinguish children apart. I can tell if one is very tall or very small, but no details of eyes, facial expressions or dress. So when I lose track, I have to say, Sweetheart, remind me of who you are.Leaving the house, furthermore, can be a challenge to make sure I kiss the right children good-bye. They laugh and I end up joking with them, but I do find out the lay of the land.

The caller ID talks, as do the clocks, watches and thermometers. The movie videos are described, the washer and dryer are braille labelled, taped books are a common sight as am I, hunkered over my talking computer. We have print/braille cards and Scrabble board.

I ask the kids to check my make-up before I leave for work. NO matter how careful I am, too often mascara smudges or I have got the wrong colour lipstick.

My kids read labels in the grocery store, on cans in the pantry, on medicine bottles and on the mail. They read the recipes, and I do the cooking. I make the lunches and sign the field trip permission slips. The kids read the notices, and I write the checks. It is a balance. They are used to me feeling around for things and tripping over my guide dog, and I am used to them leaving landmines of shoes and back packs to trip over.

They pick out the socks, clothes and ski gloves etc., but I have the final word and, of course, the parental responsibility of paying for them.

I do the laundry, but they spot their own clothes. I iron and put clothes away. I make beds and pick up the floor. Not vision-related, but mom-related.

I enjoy spoiling them. My nine-year-old asks for a snack from the couch in the family room. I go into the kitchen and return to the couch only to realize

I am in full conversation with black leather. She giggles from across the room,Mommy,over here.

I cheer wildly at sports events much to the kid's dismay. I love to be in the middle of the excitement. I do rely on other parent's descriptions but never miss an excited of my own child's voice.

We ski as a family, and both my husband and my son can voice guide me. What a gift to be active with my kids! We sea kayak together, hit the gym, run and hang out on long summer days at the beach. I like to listen to them play beach volleyball as the sun heats my body. Their laughter fills the air, and I can see them as clearly in my mind as a set of sighted eyes can see them on the sandy court.

My six foot one son still holds my hand as we walk up the street. My 9-year-old still falls asleep in my arms each night. They draw images on my hand of what they see. I tell them what I smell, hear and feel. The images are rich.

The logistics of parenting as a blind person are significant. They can be daunting. Being organized is a key. Being well rested is essential. Being calm and centered in myself is a prerequisite to a successful outing. Both my kids are great walkers. We are used to taking the Handy Dart or cabs to appointments when their dad is not in town with the car.

I know their smell and taste the salt in their tears. I feel them tremble when they are afraid, and hear the pride in their voice with confidence. I know their muscles and feel the pain as the tension melts beneath my hands. I rub in liniment cream, braid waist-length golden hair and never take for granted the privilege of parenting.

We share a vision, a closeness I would have a hard time trading--even for sight.

Adventures of a Blind Single Parent

Editor's Note: Editor's Note: Joyce Main is a person who believes strongly in participating in her community. She currently lives in Toronto. Here's her story:

I faced many challenges as a blind single parent in the 1970's and 1980's.

I tried to create a comfortable home environment and build supports that would endure throughout our lives. The family budget included things we were mutually interested in such as sports, music, puzzles and mystery movies. Our lifestyle focused on an organized daily routine with opportunities to teach cooking and other domestic skills.

Cecillie and Mike got used to the way I did things without sight and didn't think I was much different from other moms. When I did ask for assistance, both of them helped me, always respecting my independence.

Facing the Challenges

I abandoned my plans to get a Masters in Teaching because boards were not hiring or accommodating blind teachers. I also held a certificate in Business Administration and Accounting and had worked for Revenue Canada and Communication Canada. My best chance in obtaining a lucrative career again was to major in Political Science, Law and Public Administration. Ontario Vocational Rehabilitation Services enrolled me in a Bachelor of Social Work HONOURS program.I obtained two Degrees using Scholarships, Forgivable Student Loans and money from my grandmother. I also completed a placement with the Sudbury Labour Council in fourth year Community Development.

As a member of the President's Advisory Council, I helped acquire a Kurtzweil and Visutech for the university. I retrained in orientation and mobility, worked with a guide dog and studied braille.

Reading services offered by the University Women's Association were declined when the president told me that talented disabled persons like you should have a segregated university.This attitude was also reflected in the psychologists who administered testing each year when I was being assessed by the government for further funding. A third year Social Psychology professor and Dean of the School of Social Work (former West Point Officer) tried to discourage me from taking the course. I told him he couldnt stop me because I was an honours student and the fee was paid. His method was to profile each student and try to find a breaking point. There were 40 students at the beginning of the semester. He told other faculty that since I was a short older single parent with a severe disability, I would be the first to drop the course. Twelve of us completed that elective.

Class notes were on a tape recorder, and faculty allowed oral exams for all third and fourth year courses. Many of my textbooks were on reel-to-reel tapes from

Recording for the Blind in New York. I found policy documents at the audio library, Trent University, in Ontario. A friend read Canadian Anthology, and another Chemistry Major read political science for me. Both Mike and Cecillie developed better language skills by reading for me and in later years, they even critiqued my assignments and practicum's.

Our Memories

I was Family Activities Director in the local chapter of Parents without Partners. The focus was that members have the opportunity to do things with children in their custody, as well as children who could visit them. Elsa, Cecillie and Mike camped at Provincial Parks, went on sleigh rides, explored historical sites and museums, visited the Toronto Zoo and Safari and saw Niagara Falls. Our Chapter hosted a corn roast and hayride for 200 members at a local farm during the haying season. The children went on hayrides and then camped out over night.

Mike drove the tractor when he was 8 and drove a car on country roads when he was 12. He went on field trips with geologists and learned computer skills in state-of-the-art computer labs at Laurentian University. He played football, basketball and hockey with out-of-province and international students.

Cecillie and I sang harmony at her High School Band rehearsals held at our house.

I competed in the Regional, Provincial and National Games for the Physically Disabled from 1978-1986. Cecillie and Mike sometimes trained with me and cheered me on in every event. I am sure their support gave me incentive to win medals and qualify for the Olympics in Holland.

I still recall the pride I felt when I saw Mike in Air Cadet dress uniform on parade.

He also did stand-up comedy in the school talent show and won first prize. We worked together on a campaign to elect his mentor/my Law professor as Federal

Member of Parliament.

One afternoon we listened to a friend play classical guitar while we were doing laundry--his name--Bryan Adams, at that time a Graduate Teaching Assistant in the Psychology Department at Laurentian University.

Cecillie finished college and obtained a good job. Mike lived with me until he went to Europe to complete his education. Both learned positive responses to stereotype attitudes and how to work for community change. Together we found ways to get the job done, each contributing aptitudes and skills that we continue to use today.

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