Believing is Seeing, by Maggie Edwards

You know that scene at the end of The Polar Express where the main character rings the bell, and he can finally hear it? Or that scene in The Santa Clause where Tim Allen finally sees the reindeer fly in the snow globe? The purpose of these scenes are to show the magic of Christmas and that seeing isn’t believing but believing is seeing. I was reminded of these moments when I picked my son, Oliver, up from daycare the other day. He was only a few weeks into a new home daycare. We previously had him in a Montessori daycare but with the school being closed for the summer Oliver was placed with his sister in a home daycare for the summer months until he starts Junior Kindergarten in September.

The first few weeks were okay. The daycare provider is a lovely, caring, woman who gave reports daily on how they had good days, but yes Oliver tried to run away today while they were at the park, or he was taking toys away from his sister, maybe he is bullying her a bit. But on this particular day, when I went to pick the kids up, she greeted me at the door with a big smile about what a wonderful day they had. As we were leaving, she bent down to Oliver’s level and gave him a big hug. Her whole demeanor had changed. She could finally see Oliver.

Oliver was diagnosed with Trisomy 21 three days post-natal. We had done all the prenatal testing during my pregnancy and received the results 1 in 547 chance of Down syndrome. Not that it mattered, Jeff and I had the conversation about the possibilities before the prenatal test as my sister had had a false positive result with her son and went on to have an amniocentesis which then showed a typical fetus. We only went ahead with the testing as I wanted the extra ultrasound.  I wanted to peek at the boy, as my mom would say. I remember the doctor commenting that my results were a lower chance of chromosomal abnormalities than the standard for my age. Needless to say, a Down syndrome diagnosis was completely off our radar.

I went into labour, five weeks pre-mature, the day we moved into a new house. I had to be transferred from Milton to Oakville Hospital by ambulance, as Milton Hospital was not yet equipped with a Neonatal Intensive Care Unit (NICU). When Oliver was born he was the most beautiful thing I had ever laid eyes on. So tiny at 5 lbs and so blonde!!! I was in love. It wasn’t until the next day the doctor advised us he wanted to do further testing as he thought “his eyes are a bit far apart….or he could just look like Mommy,” which Jeff and I still joke about…Did he just tell me my eyes are far apart? We didn’t think anything of it. He was so perfect to us!

When we finally got the diagnosis, it didn’t really mean anything. We could already see Oliver…he was Oliver. He was this little boy who somehow brought calm to a room. Having him close put me in a state of calm reserve. Looking back, the diagnosis actually may have saved Oliver’s life as they began checking his heart function at that point and found the atrioventricular septal defect (AVSD) that required surgery five and a half months later. We spent almost eight weeks in the NICU at Oakville Hospital after his birth, and when we were leaving, one of the nurses asked us if she could stop by and visit him sometimes as she lived in the same town. Some may find this inappropriate, but it kind of just rolled off of us….she could see Oliver and the magic within.

When Oliver changed classes at the Montessori school, from the Toddler to Casa room, we had planning meetings with our resource consultant and the Montessori directress who asked a lot of questions. As we left the meeting, I remember mentioning to my husband how nervous the directress seemed to be. She was scared to teach Oliver.
Not long after Oliver moved to the Casa class, I dropped him off one morning and the directress gave him a high five on his way in and then she bent down and he hugged her. There it was again…the sudden shift. She could see him. My sister mentioned it to me the other day as well. She had been kind enough to take our two children so my husband, Jeff, and I could have an evening out for dinner. My sister fed our kids dinner and took them to the park with their cousin. She mentioned to me after, that although Oliver is not yet verbal, she could pick up on his cues and really understood what he wanted….of course she could. She can see him.

I often wonder if there is a way to make it mandatory for doctors who are delivering the prenatal diagnosis to have to spend a certain amount of time with our children. That they have to really be able to see these children before making any recommendations about them. As we make this transition to Kindergarten and the school system, I know it will take some time for Oliver to get into the new routine, and it will take some time for his new supports to get to know Oliver. But I also know it will be ok….once they see him. Because if my Christmas movies are right about anything, it’s that once believing is seeing that’s when the real magic happens!

Maggie Edwards is a Mom to two children, Oliver and Atlee, and a proud member of the Halton Down Syndrome Association. She splits her time between her work in Risk Management and at home with her husband Jeff and the kids.

Inclusion by Kari Burk

(The following is an excerpt from the book Snapshot of a Soul Place in the land of special needs, written and illustrated by Kari Burk, with much gratitude and thanks to the author for permission to share.)

“Are you a monster?”
he asked while climbing around
at the playground.
“No!” she said with
a laugh.

Is that cat green?
Why is it green?
I’m not used to seeing a green cat.
Why does it have two different eyes?
Eeek! I’m afraid of it!
Is it a monster?
Where does it come from?
What happened to it?
I don’t know if I can be friends with it.
Yikes! That cat seems weird to me!

I created this Green Cat painting in response to Mielle being innocently asked by another child,

“Are you a monster?”

The love, care and acceptance shared within families and friendships
sometimes has to carry the weight of its opposite,
which is exclusion.

I remember how painful it was for me when Mielle was younger and some
kindly person would have to tell me that she couldn’t participate
in a class or program because she required one to one attention.
I would climb into the car and weep,
and Mielle, oblivious to the problem, would ask me, ‘Why mom?’

In her teens Mielle started talking about ‘kids’ eyes’ when we were in
a grocery store or park. I realized she was aware of children staring at her
because she is different and on occasion this would bring her to tears.
We’d suggest not letting it bother her,
that kids stare because they’re curious
and maybe she could say hello and make a friend.

But her feelings were getting hurt because she felt unaccepted.
She thrives on social interaction and is highly sensitive to failure.

I first saw a person with Down syndrome at eight years old in the corner store
and I did the exact same thing, I stared for a very long time.
The storekeeper was kind enough to notice my bewilderment and talk to me
about this special person which helped me not be afraid.

Children who are exposed to the world of special needs
are more comfortable with differences. Inclusion in whatever way possible
is extremely valuable for all concerned.

I try to stay positive for myself and Mielle but there have been many times
where I too have cried when a wall suddenly appears.

I have to look to my skills and practices to create a door or window in this wall,
to see it as an opportunity more than a struggle,
to move forward with good choices
and keep rowing the love boat gently down the stream.

Author and illustrator Kari Burk is a multimedia artist and landscape gardener who operates Muddy Tutu, Organized Grime and Garden Art in Castlegar, BC.  A graduate of Emily Carr School of Art and Design.  She’s a painter, poet, performance artist, musician, dancer, cartoonist and curator.  She has self-published fourteen chapbooks of poetry and exhibited and performed throughout BC.  Her art is available for sale and by commission.  Kari lives on a Kootenay mountaintop with one of her greatest works of art,  her daughter Mielle.

The Perfect Match, by Anna Vos

The day that we said “YES” in May 2014 changed our lives forever.

We were in the process of our second adoption from Ethiopia. This included mountains of paperwork, visits with our adoption practitioner, expired home studies and police checks, doctor appointments, and waiting for ministry approval. We were eagerly anticipating “the call” from our agency.

On May 13, 2014 we received “the call”! We immediately fell in love with the precious little boy with beautiful big brown eyes that stared at us from the computer screen. We could barely contain our excitement as we spoke on the phone with the director of our adoption agency. He wanted to know if we would consider this adorable little boy as a possible match for our family. Without hesitation we were ready to say “yes,” but our director calmly said, amid our excitement, “Just wait, Anna. They think that he might have Down syndrome.” Nonchalantly, I replied, “Oh, okay.” He kindly encouraged us to take the weekend to think and pray about our decision. That is exactly what we did.

Our decision did not change, even though this scenario was not in our original plans. We had completed a pre-adoption “checklist”, and it saddens me to say that we did not check off the box for accepting a child with special needs. We were approved for a child with “minor physical correctable needs”. We are so thankful and humbled however, that God had other plans for us!

After waiting for ministry approval (again!), more paperwork, and court dates, we finally brought our son, Seber, home after an agonizing two year wait. Seber adjusted incredibly well to his new family, country, climate, (although he was not a big fan of Canadian winter weather at first!), language, friends, and many other major changes in his life. He has learned so many new things and every day he astounds us with his many abilities! He has learned sign language, how to read (sight words), and how to speak a whole new language! He loves all sports and he loves playing with his four older siblings. Every day he is proving what the world thinks about people with Down syndrome is wrong, and we are so proud of him!

While recognizing the terrible grief, trauma, and loss that goes hand in hand with adoption, we also believe in the sovereignty of God and that He chose Seber to be our son. Seber has taught us so many things. He has taught us about forgiveness, unconditional love, patience, and how to have a more positive outlook on life by enjoying every moment. He shows us an unlimited amount of daily affection (he loves hugs, and kissing my hair!), and he never ceases to make us laugh. We have a strong supportive community within our church, school, and with the Down syndrome community. We have learned unconditional love and the importance of belonging for those with special needs and the important role that individuals with Down syndrome play in society.

We cannot imagine our lives and what our family would be like without our son, Seber. We are so thankful that God brought him into our lives because, for our family, he’s a perfect match!

Anna Vos is blessed with five precious children and a wonderful husband whom she has been married to for twenty-five years. She loves keeping busy with a variety of different things as a stay-at-home mom. Prior to her twenty year maternity leave, she taught grade five at Halton Hills Christian School.

High Five by Debbie Boycott

Presents come in all different wrappings and packages. Of course, we need to open the gift to see the wonders it contains. Not so different, I think, when you are expecting a child.

While I was pregnant with Emily, I had no idea she would be any different than our three other children. She was very active inside me, and I gained a healthy thirty-five pounds. There were no indications that this birth would be any different from my previous ones. Emily weighed 8 pounds 8 oz. at birth, but she was three weeks early. This early arrival didn’t arouse any suspicions in us. Emily was nursing well. When she was born, we were in a room to ourselves for the first few days.

When Emily was two days old, a pediatrician was called in to see her. He was quite blunt and asked if we had a history of mental retardation in our family. At this point, we asked him “why the questions” and he replied the nurses in the nursery had suspected Emily had Down syndrome. He had been called in to observe. He told us that some of Emily’s features, such as her narrow, slanted eyes, small ears, and low muscle tone, indicated she had “Downs”. Emily didn’t have a simian crease in the palm of her hand, which was a common indicator, but this doctor had the crease!

Then the hardest work began, that of telling all of our family and friends. On the one hand, we were sharing sad news and I felt the need to encourage others and make family feel better. But on the other hand, at the same time, we had just given birth to a healthy little girl and we (mostly Dave) were ready to celebrate this.

Almost as soon as Emily was born, I went into “teacher mode” and began implementing programs to help her reach her potential. If the books I read said a baby with Down syndrome would walk between sixteen months and three years, by golly, Em was going to walk by sixteen months. We had an Infant Stimulation worker, Carol, who came to our home biweekly to work with Emily and I. Carol would work on Emily’s language and fine motor development while I took copious notes and made diagrams so I could remember the exercises to work on daily once Carol left. I transferred these exercises to check lists on charts so I could check off ten repetitions of each exercise daily. Carol was an invaluable resource to us, and because she could see we took Em’s development seriously, she invited a physio-therapist from Halton Region to come and do an assessment on Emily and see if she thought Em could benefit from physio input. Up until this date, thirty-six years ago, no child with Down syndrome was on this program in our area.

Mary, the physio-therapist, assessed Emily who scored low on her level of muscle tone, even for a child with Down syndrome. However, Mary could see we were willing to “put in the work” with Em and she became an instrumental part of our program. Mary began visiting other children with Down syndrome as well, and when the numbers became too great, she started group sessions in Milton where mothers would bring their babies with Down syndrome to a central location, and she would work one-on-one with each mom. To alleviate the problem of note taking, Mary conscripted me to be her videographer. I would videotape Mary working with each baby. Mary would transfer this video to a VHS tape which the family could take home and watch to review these important skills. Mary became a great family friend, and she is always inspired to visit with Emily and is so proud of her accomplishments.

I remember thinking that I was fooling everyone when I took Emily out and that no one could even tell she had Down syndrome. One time a lady came up to us in the grocery store and commented on Emily being “mongoloid”. After I recovered from the shock and outdated term for Down syndrome, I couldn’t believe she could tell! Years later, when I looked at pictures of Emily as a baby, I realized I was only fooling myself. I had wanted to “fix” Emily and make her the very best she could be.

I looked into the Philidelphia Institute who had developed a patterning program for children with Down syndrome. I met with a Mom who lived nearby and was on the program with her daughter. After seeing it, we felt strongly the program wasn’t for us. I did read their “Teach Your Baby to Read,” and implemented their flash card approach to building sight vocabulary. When Emily was sitting at various times throughout the day, I would flash the cards in front of her. I made books for her to read from family pictures. By the time Emily reached kindergarten she had quite a large repertoire of sight words, which gave her a bit of a head start.

I did feel Emily was blessed to have siblings to mirror and to love her. She took her place in the family and truly owned her spot as the fourth child, second youngest. She was Mark’s big sister. The children pitched in as much as they could with these daily exercises I put Emily through. When she was learning to crawl, we put a towel under her tummy, which Beckie held up and I would position myself over her and use my knees to prod her legs forward and my hands would move her hands in the proper alternate pattern. I did wear out a pair of jeans in the knees doing this! I remember feeling like Dave got to be the “fun guy” when he got home at night. He would tumble and play with all of the children and wrestle with them on the carpet. He was always wonderful at that, and once he arrived home he was all theirs. The girls took dance lessons, and the boys played rep hockey, and they all participated in Kids Club and Sunday School. Wherever we went, Emily came along and we found all of our friends and family were extremely supportive of Emily and very interested in her development.

When I pictured Emily growing up, I thought her intellectual development was of supreme importance. I guess that is why all of this stimulation was so important to me. In hindsight, if I was making suggestions to new parents, I would stress the importance of social development. As with all children, responding to others in a kind, compassionate way, making eye contact, creating a healthy self-image, are all essential for making friendships, working in a job, taking instruction, enjoying others, and showing compassion and empathy for others.

Emily has always embraced her faith. Faith has never been an issue for Emily. Faith in Jesus just makes sense to her. Her favourite part of the church service is worship. She loves the singing. She does listen to the message and can be very moved emotionally by it. If I am away one Sunday, Emily takes notes for me so I don’t miss out. She copies the sermon points from the overhead. This wasn’t a request from me (I never thought of it), she just picked up the slack. Over the years, Emily has helped in the nursery, and served at seniors’ dinners at our church.

As I mentioned earlier, all of our children participated in competitive sports both in our community and at school. Emily went to watch and cheered for her siblings. When she got a little older, Emily started gymnastics, then ballet, recreational soccer and swimming, all in community programs. When Emily was thirteen, Dave saw an article in the paper about a swim program offered by Special Olympics. He took Emily the following week, and we look back on this as a watershed moment. Emily immediately loved the interaction with new friends, which nicely filled the lagging invitations to birthday parties and outings with school friends. We enjoyed seeing this interaction, and we also valued the fitness component and her ability to shine in her own right while having fun. Two years later, we heard about rhythmic gymnastics being offered through Special Olympics. This became Emily’s sport. She had always loved to dance in her room. Emily is also a natural performer and enjoys the spotlight. As Emily climbed the ranks in this sport, she excelled, and her travels took us to China, Greece, and Los Angeles for Special Olympics World Games, as well as countless competition across Canada, the United States and England.

Emily has had many wonderful opportunities to develop leadership qualities through our local Down syndrome association, HDSA. The Graduate Group plans and organizes social events for their group. As well, these young adults volunteer at HDSA events such as our yearly Gala in March, the Holiday Party, the annual Family Barbeque, and of course, our annual Go 21 walk event. Emily and her good friend, Adelle, go “on tour” in March and speak at many local school assemblies sharing about people who have Down syndrome and highlighting their abilities.
Emily works one shift each week at Boston Pizza in Milton and volunteers at the Darling Home for Kids. She also helps every Tuesday at Foxfield Stable and works with the horses once she has finished her riding lesson.

Dave and I, and Emily’s siblings and extended family, feel that God has generously blessed our family with a wonderful gift, in Emily. She makes us laugh; she challenges us to adhere to the moral standards we uphold. She strengthens our faith, makes us look at the world with awe and wonder, and she shows us what is possible through hard work and perseverance. She is very forgiving and most of all loves a good party.

Emily retired from competing in rhythmic gymnastics two years ago, and is a coach with the Georgetown Butterflies. She is now very involved in competitive swimming with Special Olympics. This past weekend, Emily and I were away at the Defi Sportif in Montreal. Emily was swimming the 100 IM (Individual Medley) and was out touched at the finish line by another athlete. Emily would get the silver medal. As the athletes swam to the outside lanes at the end of the race to clear the pool for the next event, I noticed Emily wasn’t leaving her lane. She waited until the athlete who won the race swam by so she could give her a high five. I had tears in my eyes when I saw what had transpired – an unnoticed event to most. This is our Emily. We are so proud of her.

Debbie Boycott is a retired teacher, mother to five, and grandmother of eight. She and her family were founding members of the Halton Down Syndrome Association, along with three other families. She lives outside of Milton with her husband Dave and daughter Emily.

An Ode to my Son on the Eve of your First Birthday by Kim Reid

Third (and final!) Chapter. A year ago today I was wishing I hadn’t waited so long. I was regretting my foolish pride, and the idea that I knew enough about labour to know when I was in the thick of it. I cried in the driveway, saying goodbye to your brothers, and falling into your Daddy’s arms, worrying that, against my midwives’ requests, that I would be delivering a baby on the side of the highway in the middle of winter. Your Auntie Sam and Nana promised me we would make it, and they were right. We JUST made it.

Minutes after arriving I was in a gown, and they were calling for backup and asking me not to push. But you, my sweet prince, were not going to wait for anyone. You knew where you were headed, and were ready to get there. Mere minutes after arriving on the maternity ward, the midwives placed you in my arms for the first time, and all was right in the world. You were our biggest little bundle, all blotchy and swollen, and I stared at you for hours, soaking in every crease and wrinkle on your sweet face. You have hands like Papa, bear paws, which even as a newborn looked so strong and secure. I was in awe of your strength the first time you reached out and grabbed my finger, strength that I still admire everyday as you continue to move mountains. Our people were there within minutes to shower you with hugs and marvel in your glory. Your brothers kissed your soft cheeks and wanted to be the first to hold you, sing to you, and show you their Spiderman toys. They loved you the minute they saw you, and have promised more times than I could count that they will protect you, support you, and love you forever.

Our first day home, I laid in bed with my four boys and cried. Hormones and fears took over my emotions, and as if he could read my mind, Henry said “he’s just so perfect, Mom, I can’t believe that he’s our baby”. And for a brief, but tremendously powerful moment, I knew that he was right. Those words echoed in my head while I stared at your sweet little face, in awe of your beauty, and filled with wonder about how you looked so different than your brothers in their first days. I spent hours laying in bed, inspecting every inch of you, tiny curved pinkies, adorable gaps between your toes, and long and defined creases across your little palms. And finally I said the words out loud, and then a midwife said them out loud, and then a doctor, and then they became a part of us. A part of us that first brought fear of the unknown, but now brings great pride and joy.

We were passengers on a roller coaster of emotions for the next few weeks, but through it all, we held you tight, watched you grow, and felt our tribe welcome us in with open arms and open hearts. I felt comfort watching your brothers hug and kiss and entertain you; I felt excited listened to Papa telling you about boat rides at the cottage and how you could sit on his knee and take a turn being the captain. I felt at peace when tears slid down my cheeks after coming home from the grocery store and seeing you sleeping peacefully on Nana’s chest while she read, or hearing Daddy singing you James Taylor from across the room. These moments, all of these moments and so many more, reminded me that we were exactly where we were meant to be, and who we were meant to be. Life with three under five can be crazy, and we had good days and tough ones. We got busy; birthday season was upon us, the days felt long, but the weeks short, and then before we knew it, spring had sprung and we were able to get outside and feel the light upon our faces again. It felt warm and familiar, and reminded us how lucky we are to have three beautiful boys to share our life with.

You, my sweet Duncan, were the perfect baby. You slept, you nursed, you smiled your sweet and infectious smile, you babbled, and you made the world, our world, fall in love with you. The past year has been the best of my life because you and your amazing brothers were in it; because now our family is complete, and because I could not have asked for a sweeter, happier, or kinder soul to share our lives with. You are easy to love, and impossible to forget. You touch the lives of those around us with your cheerful smile that shines so bright it lights up a room, and so warm it makes me feel like I could hug you forever and it would never be enough. Thank you for reaching out for me when I enter a room, I’ll never get over how amazing it is to feel your love. Thank you for smiling your biggest smile when Daddy, or your brothers, or Atti, or Izzy do something silly. Thank you for amazing us every day with your strength and determination. Thank you for cuddling into my shoulder and rubbing your cheeks against mine, and thank you for your sweet slobbery kisses. Thank you for loving books the way I do, and for loving music like Daddy does. Thank you for hugging your brothers when they need it, no one brings them comfort and makes them happy the way you do. Thank you for making me feel complete. Thank you for choosing us. Dunc, you are special. You are brave. You are strong. You are wonderful. You make us so proud. And I love you today, tomorrow, and forever with all my heart.

Kim Reid is a mother of boys, lover of learning, happiness enthusiast, and proud member of the Down syndrome community (our sweet baby boy, number 3/3 has T21). Our boys keep our hearts, our schedules and our laundry hampers full, and continuously inspire us to run fast enough to keep up, while living slow enough to appreciate the beauty in the little things.

Expectations by Karen Ellis Kendel

It’s funny how as parents we initially expect that our children will be perfect, despite knowing deep inside that we all have our flaws. I remember being heartbroken when my first “perfect” child was found to be quite farsighted at the age of two, and was prescribed glasses. I worried he would be bullied at school (many years into the future at that point!), that he would have difficulties playing sports, that he would have a hard time managing them at such a young age. In fact, he did fine – has never lost or broken them – is astoundingly athletic, and universally well-liked at school.

I remember being shaken when my second “perfect” child experienced an anaphylactic reaction to tree nuts at eighteen months, and needed to have an epi-pen in close proximity from that point onwards. My new worries involved trusting that anyone I left him with would have an adequate understanding of his life-threatening condition, and the knowledge of how to save his life should he inadvertently ingest a food containing hidden nuts. This took birthday party stress to a whole new level!

However, unexpected differences in my third “perfect” child were discovered before she was even born. When the midwife called two hours after our twenty-week ultrasound, I sensed something was off. This hadn’t happened in either of my previous pregnancies. She explained that they had noticed a couple ‘soft markers’ for Down syndrome, and referred us to a genetic counselor immediately. We decided on the non-invasive prenatal test (NIPT), only recently covered by OHIP, involving just a blood sample. This NIPT came back a week later from lab analysis in California showing a 99% chance our baby had Down syndrome. This news hit us hard. We didn’t have much personal knowledge of the condition, only general stereotypes that we came to discover were outdated. I was a physical therapist by training and had worked with many people with various disabilities, but only one of my clients had Down syndrome, and he had been a wheelchair-bound man in his fifties with severe leg deformities and a very poor quality of life.

The old-school Geneticist we subsequently saw was not very reassuring – presenting a lot of worst-case scenarios; a ‘doom and gloom’ approach. The option of terminating the pregnancy was floated around by various professionals, as if this unborn child did not deserve a chance at life, despite our firm responses that we *wanted* our child. That being said, we certainly grieved the “perfect” child we had been expecting. Then we picked ourselves up and started researching, reading, and reaching out to our local Down syndrome association. The new parent coordinators immediately showed up with their smiles and warm words of congratulations, and helpful, accurate materials. We could already see that a brighter future was possible than the dark picture painted by that first doctor. We took tentative steps towards connecting with this new community and felt supported.

One serendipitous encounter happened while walking home from dropping off our first-born at Junior Kindergarten, where he had started only a few weeks prior. The prenatal diagnosis of Down syndrome was fresh, and I was still coming to terms with it. Another mom was also returning home from JK drop-off, pushing a stroller with a sleeping babe. We started chatting, and this mom – Sarah – shared they had just moved to the neighbourhood, after a prolonged hospital stay with their new son after his birth. I had recently read that newborns with Down syndrome frequently have complications necessitating hospital stays, and so I tried to commiserate, telling her that I was six months pregnant with a baby who would be born with Down syndrome, and so might have a long hospital stay in my future as well.

She stopped in her tracks, looked at me, and told me that her son also had Down syndrome.

I had no idea. I was honestly just “practicing” sharing my news with people, and as a stranger, Sarah somehow seemed easier to tell than a family member! It was such a profound moment; we both felt goosebumps. Needless to say, knowing another mom in my immediate community who was only a few months further down this journey provided immense comfort, both then and now.

Of course, the journey is never smooth. At thirty-three weeks into the pregnancy, the right side of my face slowly became paralyzed over the course of an evening. We rushed to the ER, fearing a stroke, and in time learned it was “only” Bell’s Palsy. Unfortunately it didn’t resolve as quickly as it usually does – my body was more concerned with other pressing matters, like growing/birthing/feeding a baby! And so I experienced what it was like to have a face that looked “different”, to have people stare, wonder, question. To have difficulties talking, eating, tasting, hearing. Part of me wondered if this was somehow preparing me to be able to empathize with my daughter’s future experiences. We are such visual beings who value our appearance more than we might like to admit. Another part of me was secretly scared that my new babe would not learn to smile properly, as she wouldn’t see a “proper” example on her mother’s face… or that my children might somehow be embarrassed by my twisted mouth. The strong steroid and anti-viral drugs the neurologist prescribed, and that I took while pregnant against my better judgement, turned out to be of no use. Various other therapies I tried (acupuncture, osteopathy, essential oils) were no better. My face remained completely flaccid for four months, and recovery came only in tiny increments thereafter. More than four years later I still can’t properly smile, but at least I can blink again;)

Our daughter Kaitlyn arrived at full term, a healthy 7 lb. 13 oz., screaming her way into the world. My midwives were amazing, one even going above and beyond by coming in during her vacation time to be present for the birth. The on-call paediatrician examined her, and couldn’t think of any reason to keep us in hospital, and so said, “I guess you should at least stay for 24 hours”. This was significantly longer than we had stayed for our previous births attended by midwives, but given the circumstances, we were thankful. It allowed time to have an echocardiogram done, which showed only a minor Atrial Septal Defect, which had no clinical symptoms or relevance. We had the healthy baby we had prayed for.

One thing that had been worrying me towards the end of the pregnancy was Kaitlyn’s ability to nurse. Breastfeeding was very important to me, and I had read in several places that newborns with Down syndrome had a more difficult time with this due to generalized low muscle tone, along with altered oral structure (a narrow, high palate, for example) and general drowsiness in the early days. My first two children had been exclusively breastfed, and in fact, my second son had continued to nurse all through Kaitlyn’s pregnancy, despite the usual dip in supply. In hindsight, I believe this was a gift to Kaitlyn as tandem nursing them both during her early life meant he did the work of bringing in the milk, ensuring adequate supply despite her weak latch, and allowing her to grow and thrive during those crucial first days and months. She became a stellar nurser – a beautiful chubby baby. It turned out that I had nothing to worry about at all. This was only my first example of how, with a little support, she could blow preconceived notions out of the water.

In the early days, I remember reading a book about parenting a child with Down syndrome that advised teaching your child to read before entering the school system, so the teachers would be presented with clear evidence that your child could learn, and then would approach them with greater respect. While this all sounded grand, I really doubted that I would be able to do this. After all, I felt like I was barely keeping my head above water while taking care of three young children. My previous two typical kids were reasonably bright and had only learned to read at the relatively early age of four while in Junior Kindergarten, not beforehand. How was I going to find time to be able to teach my preschooler with Down syndrome to read, or even have the knowledge of how to do this? Well, once again, with some unexpected support, my daughter again blew past my expectations. Around the time Kaitlyn turned two, my own mother uncovered a dusty box of flash cards in her basement that she had used with me when I was a toddler. She sent them my way, and I decided to try a modified version of the Glen Doman method that my mom used with me – just a few minutes a day, a few words at a time. It turned out that Kaitlyn loved learning words on flash cards, and after only a few sessions could accurately either sign or say the word I showed her. In a few short months her word count was into the hundreds. I first noticed her spontaneously reading her simple board books out loud when she was only three, and now at four she loves reading more complex stories. We have yet to see how this will translate into more respect in the school system when she starts this coming fall, but I believe that it will open up pathways for her. My hope is that she will continue to inspire all of us to aim higher, and achieve beyond our wildest dreams.

Karen Kendel worked as a physiotherapist before focusing on raising her three children. She currently lives in Milton, Ontario.

Waiting for a Snowflake to land on my Tongue – by Jennifer Crowson

One of the first things I read when learning about having a child with Down syndrome was that he will do everything other children do, it will just take him longer. This was fine, or so I thought… but it was hard to avoid all the expectations of what your baby ‘should’ be doing and when. In our society, we are surrounded by developmental charts, by well-meaning family members, friends and strangers asking about what your child is doing now in comparison to a child they know of a similar age, and by websites reminding us where our children ‘should’ be at developmentally. I have always been the kind of person who likes things to be orderly and happen when they are supposed to, but my son Owen and a bright little girl have taught me the importance of patience.

When my son was four and half months old, I took him to baby massage class. Other mums surrounded me with their little ones aged three to six months. All of these lovely babies were smiling and giggling, some were sitting up and all were holding their heads up. My little Owen was doing none of these things. When we did tummy time to rub their backs, his little face was buried in the blanket and I could sense his frustration that he could not get his head up – and I am sure he could sense mine. I found myself comparing Owen to his peers, knowing this was not fair to Owen or myself. I left the class feeling deflated and did not return.

Then one day, just by chance, a girl of no more than six years old taught a good friend and me an invaluable lesson.

I was feeling a little frustrated and quite honestly sad. I wanted my Owen to smile, to giggle and to hold his head up, like other babies do. In my head, I knew this was the wrong way to think – but it was hard to avoid the way I felt in my heart. I went to pick up my older son from school and was standing in the playground talking to my friend who also has a baby with Down syndrome.

It was one of those beautiful wintery days with large snowflakes falling from the sky. We were talking about how we both needed to patient with our babies and things would happen – the smiles and giggles would come; they would sit, they would walk, they would run… we just needed to wait longer.

A young girl was clearly listening to us, as she calmly looked at us and said, “I know the meaning of patience. You have to wait and wait… and if you do….” With the most wonderful smile she beamed, “That snowflake will fall on your tongue”. She stopped me in my tracks. What a simple yet clever and insightful statement. She was right – we needed to be patient and those wonderful moments would come.

Owen turns one in two weeks. He now has the most beautiful smile, an infectious giggle, holds his head up proudly, he reaches for toys and is almost sitting on his own. With each new achievement, I think of the lesson that clever little girl taught my friend and I in the school playground – be patient and allow yourself to experience each spectacular joy that will come, when ‘a snowflake lands on your tongue!’

Jennifer Crowson is Chair of the Down Syndrome Association of Hamilton. She currently lives in Dundas, Ontario, with her husband and three boys.

Superbaby – by Dan Purdham

Okay, I caved and did it.

Why am I writing an entry for Adelle? Well, first, when we started out on this journey, my sister suggested I make a guest appearance on Adelle’s blog. I initially balked at this idea, but now think it is not such a bad one. Second, I think some others that are out there wonder what it is like for the parent who is not the one who is at increased risk, and because of the physically obvious nature of being pregnant, carrying the burden of telling people why you are off work “already” and how everything is all the time. Lastly, because here in Canada, November 1-7 is National Down Syndrome Awareness Week. While it looks like we may be having our baby in the very near future, Adelle has decided she doesn’t want to put pressure on herself to blog each day, but at least we can get a good start to the week and have a post ready (For those of you on Twitter, @CdnDownSyndrome, #SeeTheAbility).

So what has it been like?

When we first found out that our baby girl was going to be born with Down syndrome, of course I was shocked—that appointment with the genetic counselor/high-risk OB/GYN and eventually the social worker was one of the longest, most exhausting days of my life. I will never forget it, but I can hardly remember any of it. As the tornado of information whipped through my brain I found myself getting way ahead, “school, university, independent living” were all in the forefront of my mind, and I also worried about how this would affect Ariel. Thoughts raced through and were gone in seconds until the social worker slowed us down. She told us to focus on the baby and take it day by day. Wisdom that has served us well ever since.

Forty-seven chromosomes. A superbaby—awesome!

Adopting this attitude was imperative early on; we needed to come together to embrace what all this would mean for us, for our family. I have to say, adopting a positive attitude is a lot easier when you are married to Adelle. She lives her life with intensity, a subject I tease her about regularly, but it’s an intensity you get caught up in and it is wonderful. Did she cry a little? Yes. Did she have doubts? Sure. But I never doubted her for a second; I knew right from that first appointment, that I was married to the most perfect candidate for the job. So my life has been a lot simpler.

So life went on, with our healthy superbaby baking in the oven. Not being pregnant, it was not always top of mind for me as I carried on my daily life. Commuting, working, playing with Ariel, was all the same for me; life went on. I think that actually helped me too. Life did go on. As we started sharing our news with people everything began to feel a lot more real. At first it was a little hard telling people, but it got easier. I think what made it hard was that you don’t know what kind of reaction you expect or want so there is always the possibility of being disappointed. That never happened; everyone was very supportive and caring. And importantly, our healthy baby was going to be born with Down syndrome, but that was okay, she was healthy.

Until she wasn’t. Which was the news we received at our next appointment. The presence of the “double bubble” was something we were aware could happen, but it wasn’t clear what the implications of this were. Amniotic fluid has never been so scary. That appointment was hard. Really hard. It made us very nervous and Adelle decided she was done with work and I agreed, she didn’t need any more to deal with and that was that. Since then, we learned about the surgery our baby would need, met high-risk OBs, and met the neonatologist, more OBs, pediatric surgeons and more OBs. It is not their fault, but it feels like a roller coaster, one appointment things are okay, the next something is not quite right and the monitoring escalates. There is a part of me that can’t wait for this pregnancy to be done, and to meet our little troublemaker, but I know she is better off on the inside, for now.

Down syndrome, but healthy. Needs surgery, but heart looks good. Blood flow restricted, but no signs of stress. Signs of stress, but only some, and some tests look okay. It doesn’t take a high-risk obstetrician to figure out that in the very near future, one of these visits will demand intervention sooner rather than later. Oh, and babies with Down syndrome have a 10 percent stillborn rate. The doctors just throw that out there like it’s some neat fact about a small town USA. Did you know that Battlecreek, Michigan is home to the world’s largest breakfast table? Neat stuff, eh?

Needless to say, our interaction with the staff at McMaster has been wonderful to date and I can’t really complain about much. But that stat was mentioned to us in our first two or three appointments, and was done so casually and never addressed since. And it burns away inside. So yes, I am ready for Adelle to go into labour, even a little early, because I want to meet my superbaby, no matter what.
I am still in the midst of telling many people what our family has been going through the past few months and people often remark that we seem calm and at ease with everything. And we are for the most part. Thanks to Adelle.

So, I am writing this blog for Adelle, who has pushed our family through these tough times. She used her family, friends, and the blogosphere to create a network of support for us and it has been amazing. When we found out our child would be born with Down syndrome and the associated medical problems, many people reached out and told us that we were the perfect parents for the job. I guess they knew her as well as I did, because Adelle is perfect for this; she will educate and inspire all those she comes in contact with and I love her for it.