Personal Stories

Stories of Prenatal Diagnoses

Stories of Postnatal Diagnoses

Stories from Grandparents

Stories of Success and Achievement

Stories of Prenatal Diagnoses

Genevieve

"This I Believe" segment about Genevieve (produced by PSPB in April 2008)

“It is Trisomy-21. It is Down Syndrome.”

Beyond those words I heard nothing, sitting in the obstetrician’s office. The doctor was talking about my unborn daughter, Genevieve, and the results of an amniocentesis test. I know there were words after that statement, but I don’t remember them.

I do remember returning home with my wife and crying on the sofa. I distinctly remember saying “I don’t want this.”

I didn’t want this situation. I didn’t want this responsibility. I didn’t want to become one of those parents—the parents of a child with a disability.

Other people told me “If anyone can handle it, you can.”

“Easy for you to say,” I thought.

“God never gives you more than you can handle,” they reassured me.

“Really? Then why do people have nervous breakdowns?”

“We’ll help however we can,” they said.

“Fine,” I thought. “You have the kid with the developmental delay, and I’ll help you out.”

For months I was terrified. I now refer to the period of time after we received the diagnosis as “The Pit.” I barely spoke to my wife, Lucy, because I didn’t know what to say. I simply suffered through each day, with my wife, but feeling terribly alone.

And then Genevieve was born. And then Genevieve took her first helicopter ride.

She spent her first eight days in the neonatal intensive care unit at Janet Weis Children’s Hospital at Geisinger in Danville because she couldn’t figure out how to breathe. I spent eight straight days making the 150-mile round trip to see her, sometimes twice a day, because she was my daughter. I sat in a surgical gown in the NICU, holding her in a tangle of tubes and wires, amidst the beeping and blinking lights, singing the same songs I had sung to other daughters. On the ninth day, she came home.

We recently celebrated Genevieve’s second birthday. She learned to walk a month or two back and hasn’t stopped since. She climbs on everything. She doesn’t have a ton of spoken words yet, although her first full sentence turned out to be “What’s up with that?” She does have several dozen signs that allow her to ask for strawberries, cheese, or ice cream, or tell us when she wants to sleep, or play on her computer. She sleeps through the night, eats anything put in front of her, smiles all the time, and attracts admiring strangers in a way I’ve never seen before. She knows more people at the supermarket than I do. We call her the Mayor of Wegman’s. I laugh every day because of Genevieve.

I believe Genevieve is here for everyone. I believe Genevieve is taking over the world, one heart at a time. I believe that what was once our perceived damnation has now become our smiling salvation. On my right wrist, I wear a simple silver chain with three little beads on it. I used to say the three beads signified the third chromosome that results in Trisomy 21. Now when I look at those beads, I tend to think I wear it to remind me of something else I have come to believe: I don’t ever know as much as I think I do, and yet I’m always capable of more than I think I am.

Written by Gregg Rogers, father of Genevieve

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Emma

My name is Jaimie. Emma is 8 months old right now, is thriving after her open heart surgery, and is growing and doing magnificently. But I can remember back to a very dark day about a year ago that I would like to share with all of you…

I was about 16 weeks pregnant. This was my fourth child, so I was pretty much used to the way things went during pregnancy, and assumed it would be the same this time around too. When I went in for my check up, I was asked if I wanted the quad screen done. Luke and I already had agreed not to, so I still do not know what moved me to say “yes” to that question. I had the quad screen blood test done and a few days later, I was called with the results. They told me that I had a 1 in 6 chance of delivering a child with down syndrome. Right then, my world stopped. I remember the exact spot I was standing on my deck. The sun was shining that day, but I couldn’t see a thing. I could hardly breathe, and my heart began to pound. Luke was not home and I did not know what to do, so I dropped to the ground and cried and cried for what seemed like an eternity…

I was later instructed to go for a level II ultrasound at the hospital in Danville, PA to look for markers for Down Syndrome. Everything looked good on the ultrasound. She was growing right on target and they did not see a lot of the markers of Downs. Then there was a question with her heart. The doctor viewed it closely and said she was not sure but wanted it to be viewed by a pediatric cardiologist to make sure there was nothing wrong. That was the day we met Dr. Monaco. I laid there on the exam table, for another ultrasound. Dr. Monaco said that without a doubt, our Emma had a complete AV Canal heart defect and would need open heart surgery within the first 3-6 months of life. With this diagnosis, along with the fact that her arms and legs had started to lag behind a little in growth, and in addition to my increase in amniotic fluid, they were just about certain that she had Down syndrome. Some doctor came in to me and told me he would be absolutely shocked if my baby did not have down syndrome. I was frozen- unsure of what to attempt to digest first, when I realized I could not digest any of this. I was paralyzed with fear. I could feel nothing except the tear that ran down my cheek and hit my belly. Luke was out of town for this appointment, but luckily, I had my parents with me. They grabbed ahold of me and told me it would be fine and we would make it work somehow- together. We drove home in silence, and when I got home, I asked my parents to take my kids so I could be alone for awhile. I curled up in my bed and cried and cried and cried, holding my belly tight. I could not make sense of any of this. I had to face so many unknowns right now, yet I had to continue being a mom to my three other kids and continue on with daily life- something I thought was physically impossible. But, somehow, God grabbed ahold of me and dried away my tears. And even though I still felt numb, I knew that I had to pick myself up and try to figure this all out. After all, “Emma” was depending on me…

I am not going to sit here and tell you that I instantly was unafraid and had the strength to be happy and handle everything that was being dealt to me. That would be a lie. It took a long time, and it probably did not end until I finally got to see Emma’s face. You see, not only was I dealing with the extremely high chance of having a baby with down syndrome, but I was going to have to watch her have open heart surgery in the first few months of life. My biggest fear in life was something happening to one of my children, and here I was, being forced to deal with just that. The remaining 20 weeks of my pregnancy were long and hard. I spent most of my free time reading and educating myself about Emma’s heart condition. I went to seek out specialists, and went to Philadelphia for second opinions and consultations so that once Emma was born, everything was completely in order to handle what was to come. That started to make me feel more in control of the situation- to know that I was doing everything I humanly could to make sure Emma would be properly taken care of once she was born.

Then, one morning, I got out of bed and my water broke. It was September 21st. About 6 hours later, Emma was born. Everyone was in place for her birth- the pediatrician, the pediatric cardiologist, nurses, specialists, you name it… Then, the doctor handed Emma to me for a moment, before she was examined. I looked into her face, kissed her forehead, and a tear rolled down my cheek, just so happy that she was here, with no more wondering about the future, that we could finally embrace it and move forward.

Emma ended up having her open heart surgery at only 2 ˝ months old due to going into congestive heart failure and failing to thrive. Her surgery is another story in itself that I will share later, but amidst all of the many, many complications that we endured, she survived, and we survived, and our family is now stronger than it ever was. Yes, it is true that Emma has endured and will continue to endure many difficulties, but there is one thing that cannot be forgotten, which I need to remind myself quite often in the hustle and bustle of therapists and doctors appointments: Emma is happy. She is the most happy baby in the world, and even though she isn’t sitting up by herself yet, and she doesn’t always hold her bottle on her own, and may not walk until she is 2, she does a lot of other really great things. She smiles all of the time. She looks up into my face, and has learned to give me kisses. She sleeps through the night and wakes up with a smile on her face when I get her out of her crib. She is eating well and is growing well, exceeding the doctors’ expectations. And most of all, she is my gift from God that I would not change for anything. I read stories like this when I was pregnant and I didn’t quite get how people could say something like that, because wouldn’t you change down syndrome if you could? My answer to that question is no. Because Emma would not be Emma without that extra copy of chromosome 21. Regardless of all of the hardships and emotionally draining days, Emma has bettered our family, bettered my relationship with Luke, and has bettered me. She has opened my eyes to see so much more of the good in the world. Emma has touched so many souls in her 8 months of life. My eyes have been opened to God’s wonderful creation and the many, many good people that are in it that I never would have known existed if it were not for Emma. Emma has also taught me not to take things for granted. Every little moment in life is special. Emma is my angel, and I will thank God for her every day of my life.

I read over my words about that dark day one year ago, and I still do get a tear in my eye, because I understand the sadness. I understand the confusion. I understand the paralyzing fear. But I am living proof that there is something bigger and better at the end of that journey than you could ever imagine. You just need to believe.

Written by Jaimie, mother of Emma

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Stories of Postnatal Diagnoses

Kara

Kara’s diagnosis was made hours after her birth, and even though I was a bit surprised at the time, after a day or so, I realized that we really did know before she was born that there was a possibility she had Down syndrome. Our Quad Screen had come back positive for heightened levels of alpha-pheta proteins. We had had the sonogram and the technician couldn’t confirm she had Down Syndrome, so we felt that we had encountered a false positive test result from the Quad Screen, which happens quite often. The technician had told us her results weren’t conclusive and that to be certain, we could do an amniocentesis or CVS test. Both Mike and I felt that it didn’t matter either way, so we opted to continue with the pregnancy and just let it go.

When she was diagnosed, our pediatricians thought she might have Mosaic Down Syndrome rather than Trisomy 21 since she didn’t present with all of the typical physical features of people with Down syndrome. Within 18 hours of her birth, she was put through a host of tests to determine if she had Down syndrome and to make sure she was healthy. She had an echocardiogram, a lung X-ray was done and she was hooked up to an EKG machine for about 2 hours. With Kara being 3 ˝ weeks early and already having trouble maintaining her body temperature because she had no fat stores, we felt awful for her because it all just wore her out. The following day I let her sleep it off, only to result in her becoming badly jaundiced since she wasn't fed every 3 hours. In hindsight, I wish her pediatrician had held off on those tests until she was stable in all other areas. I do not think she would have gotten jaundiced or lost more than 10% of her body weight if she hadn’t been taxed so much within her first 24 hours of life.

The positive side of finding out right away, was that Kara was given a clean bill of health- she is extremely healthy and happy and we couldn’t be more grateful for that.

We are also very lucky to have such a wonderful set of friends and family members that have done nothing other than love and adore Kara. No one has treated Kara, Michael, Matthew, or myself any differently because of her disability and I think that that has made all the difference in her development. She has encountered only slight delays intellectually and communicatively and has made leaps and bounds in her physical development over the past year. We couldn’t be happier to have such a beautiful and amazing daughter in our lives.

Written by Kerri Weitzel, mother of Kara

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Kaleb

We welcomed our ball of energy, Kaleb Jonathan, to the world on July 29, 2002. From the get-go he was ready to conquer the world. His umbilical cord was attached to the membranes instead of the placenta, so he wasn’t getting all of his nutrients in the womb and was a tiny 5 lbs. 15 oz., 19 ˝ in. He wouldn’t let that stop him. He was so ready to come out and experience life, and he does that everyday. He is so open to new challenges and seems to be willing to try anything if it looks like fun! Sometimes that’s a little dangerous, but mostly it’s uplifting. We are so amazed by Kaleb's accomplishments and his drive. When he was diagnosed at the age of two weeks with Down Syndrome, we never realized all that he would be doing now, on the verge of turning five.

When I was pregnant with Kaleb, I had a triple screen which was negative. The nurse told me that there would be a one in ten thousand chance my child would have a genetic disorder like Down Syndrome. So you can imagine our surprise when we went for Kaleb’s two week checkup and were told that was exactly what he had. We were told by a certain doctor at his one week checkup that the chromosome testing was just a safety measure: He really didn’t see anything in Kaleb that warranted it, but another doctor was calling for it. The less concerned doctor said that the other doctor did things on the safe side. We thought that the testing was just a precaution. Dr. Vore at CMSA (State College, PA) was the one that eventually told us (not either of the previously mentioned doctors, who are two of eight or nine in that office). He was incredibly supportive and genuinely concerned about us. I was in shock. I remember just looking at my husband like, “How could this possibly be?” I could not imagine that this was happening to us. I was 22 years old: didn’t this only happen to older mothers (Which, by the way, the answer to that is a big NO!)? As I’m sure most parents feel in this situation, we felt like this was something that happened only to other people. We certainly shed some tears and learned that crying is OK. We were terrified of all of the problems the doctor told us often come along with DS- heart problems, leukemia, GI problems... It was so much to hear all at once.

We were immediately sent to Hershey to meet with a genetics doctor and a cardiologist. Luckily, Kaleb’s heart is fine. It had a small hole that closed up within a year, which is very common. The genetics doctor told us that we should start thinking about having another child to help with Kaleb’s development. I thought he was nuts! But he was right about Kaleb needing the social interaction.

We were, or so we thought, totally alone in our situation. Kaleb is the oldest of our almost five and under group, so we didn’t know anyone else to go to or where to look for help. We were referred to an Early Intervention program, Strawberry Fields, that guided us in almost any aspect we needed help with. We also met two other WONDERFUL families, the Lippincotts and the Conklins, and we started our little playgroup that has now turned into this fantastic group of kids and families who all have so much to offer. We are so lucky to have this kind of support.

We also had the incredible support of friends and family. Most of our loved ones were there lending a shoulder to cry on or an ear to listen. Of course, there were some friends that didn’t know how to deal with the situation, and instead of asking questions, they were just silent or didn’t call. That hurt, but everybody deals with things differently. The important thing is to educate your friends, family and community members so they don’t find the diagnosis so scary. Educating yourself is the first step to this! If you have the answers, they can ask the questions! This will also help things to seem a little less nerve wracking for you!

Kaleb is progressing wonderfully. Aside from having his adenoids and tonsils taken out recently, we haven’t had to deal with any surgeries, as some families have. He does have to wear glasses for far sightedness and a slightly crossed eye, but if that’s the least of our worries right now, we’re happy! We may have struggles still to come down the road, but we don’t worry about them constantly like I thought we would. Instead we are content with all of the things that he DOES do now. He walks, talks, runs, jumps, plays, goes to pre-school, fights with his brother, sings, loves, and is an integral part of our family. Our lives would not be so full and satisfying without him. He makes us laugh and cry and sometimes he makes us want to pull our hair out- like any other soon-to-be five year old. But I would not change one second of my life with him. He has taught me patience, understanding, forgiveness, and most importantly, unconditional love. John and I can only hope that other families are lucky enough to experience a wonderful child like Kaleb. We are so willing to answer any questions or tell a million more stories about our little guy if it is helpful to another family.

Written by Sara Brownson, mother of Kaleb

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Lilienna

Before I became pregnant with Lilienna, I worked as a special education teacher in a private school. I felt, working with special needs kids, I had been given a great gift. At the same time, I felt sorry for their families, who seemed to endure so much.

During my pregnancy, I felt that I bonded very strongly with our littl-girl-to-be. All tests came back normal, the baby grew exactly as expected, and when I would lay a hand against one side of my stomach, I could feel her curl against my hand. I could barely wait to see her. I spent my days day-dreaming of what she might look like, what she might want to be when she grew up, how we would play at the park with the kids I would see as I was out walking.

Lilienna was born a week early, after a difficult labor which resulted in a C-section. They held up a beautiful baby with lots of hair, let David hold her for a few moments, and whisked her off to warm her, weigh her, and bathe her. As David and I were in the recovery room, a pediatrician and an intern came in, and after some congratulations and small talk, the doctor suggested that I may have noticed some facial characteristics in the few minutes we had been able to spend with our daughter. My body went cold. I reminded the pediatrician (as if she didn’t already know) that Lilienna had entered the birth canal face first and had some bruising and swelling because of that. When she said “Yes, but…”, I felt like I was falling into a black hole where sound filtered through in some garbled surreal manner. I heard the words “Down Syndrome”, words I had never expected to hear in relation to my child. We cried, and I thought of all the IEP meetings, aides, special equipment. I thought of the families I knew who had struggled with marital and family problems which resulted from the stress of caring for a child with special needs. I was afraid of all the difficulties I had watched so many children with special needs face. I did not want that for my daughter!

I kept asking for my baby, and we were told she was having trouble maintaining her body temperature. A geneticist came in to talk with us and answer our questions. She gave us a few pamphlets. As I read them, all I could think was “How is this little bit of bare-bones information going to help me raise my child?”

When we were finally able to see our baby, hours later, I thought she was so beautiful. I loved her so much and felt so broken-hearted at the same time. I was so afraid for her future. I couldn’t believe that this “broken” baby was the same one who cuddled up against my hand, and calmed when I sang, before she was born.

The hardest part, I think, about not knowing ahead of time that Lilienna had Down Syndrome was that I was trying to deal with all of the emotions and thoughts whirling away in my brain while I was trying to care for our first baby. On the other hand, I am so glad I had Lilienna’s beautiful baby face to relate to, as I struggled with my fears and sorrows. I soon came to agree with my mom that it was the loss of our expectations we were grieving, not the lovely baby girl we had in front of us. She was perfect, she was ours, and we adored her.

I continued to grieve lost expectations, going through periods of denial and times where I feared almost overwhelmingly what the future would bring for her. I still do from time to time. Worries sometimes catch me unawares.

Yet when I look at Lilienna, all I can see is the gift we have been given, the amazing, silly, feisty little girl who is as essential to me as the air I breathe. Sometimes, I am sad when Lilienna misses milestones (she never really misses them, only puts them off a bit). I am sad and feel defensive at some comments people make or looks they give, assumptions they make, etc. But when I look at my daughter, all I find is her extraordinary determination, her very clever sense of humor, her curiosity and incredibly strong will. I watch her sometimes, and I feel so much love, it makes me cry. I realize how wrong I was in feeling sorry for the families of the special needs kids I used to work with. There is nothing to be sorry about- I feel so fortunate!

Lilienna has taught me more than I ever knew I needed to know. She has brought into our lives the most beautiful, wonderful, real people I have ever met and made us a family. I have found friendship and support I never knew was possible in our family of Downs Families. I have found a better world than I ever knew existed in my lovely little girl.

Written by Sara Archibald, mother of Lilienna

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Stories from Grandparents

Witnessing the birth of our First Grandchild

Witnessing the birth of our first grandchild, Kaleb, I was nervous, concerned, and most of all proud! Prior to birth, reports of concern with the baby’s growth, and Sara’s stress tests put up a red flag. The quick delivery, his body tremors, body temperature, and breathing concerns didn’t quite register fully. All I saw was a beautiful baby boy, so tiny and perfect. As the hospital stay lengthened, the look on the faces of the nurses and doctors, and most of all the blood tests signaled to me, as a special education teacher, that something wasn’t quite right. I immediately looked at Kaleb for signs of something. Down Syndrome briefly crossed my mind, but I wouldn’t let myself think about it. I would wait until the test results. In the meantime, our love for Kaleb exploded!

Two weeks later, Kaleb went for his check-up, and test results. I paced the house waiting for their return. The look on Sara and John’s faces confirmed that something was wrong. When they told me that he had Down Syndrome, I said, “That’s OK. We love him!” I meant it with all my heart!! If anything would have happened to him, if he were taken away from us, I knew that it would be unbearable. My mind was racing. I quietly thanked God that he wasn’t dying or didn’t have all the other things wrong with him that I’ve come across in 30 some years of teaching Special Education. However, knowing the long road ahead of him, I began to worry about the physical complications that could accompany Down Syndrome. Doctor appointments, a trip to Hershey, and evaluations followed. By some miracle, Kaleb was spared any physical complications. His breathing did cause concern, especially at night. Sleeping upright in his car seat seemed to help. Frequent nighttime checks to make sure that he was breathing was necessary. A trip to Geisinger relieved some anxiety about his breathing.

To his benefit, Kaleb was treated and raised like a normal developing baby. Eye contact, cooing and going, imitating sounds, words (da-da, ma-ma) looked normal and he developed these skills early. Getting his first tooth, and watching him play with other children of close friends of Sara made things look right. Getting him to roll over, sit up, crawl and walk didn’t seem unusual, until recently watching his baby brother develop these skills so easily and naturally. I now realize how hard Kaleb worked to get through each step, but at the time I only applauded his success and looked forward to the next stage of development. Even though I taught over 25 children with Down Syndrome, plus every other disability possible, I only had experience with students from Kindergarten through sixth grade. Kaleb and his therapists were teaching me the missing pieces. Watching his therapists teach him to eat, use a cup, and silverware, teach him to crawl, sit up, walk, step over objects, run, climb and jump was fascinating.

Skipping over the vision problems, tonsil operation, and constant colds, I see Kaleb having lots of potential. His love of books, his great memory, sense of humor and emerging problem solving skills, good speech and social skills, and his easy going nature are strengths that are going to help him be successful in life. I see his need for friendship to be with both normal developing children and other children with disabilities.

In the future, I see a regular education inclusion classroom with modifications and adaptations to the curriculum and adult assistance. I can see him be successful with Distar Arithmetic, and SRA Direct Instruction Reading Programs. I’d like to see him master the Language for Learning Program before Reading Mastery. A good sight word program like the Edmark Sight Vocabulary Program has been successful with many of my students with disabilities. Handwriting Without Tears has been successful for both printing and cursive with most of my students. I would like him to be a part of supervised independent living, such as the State College Area School District Dream Team, which is affiliated through the ARC of Center County and their Life Link Program. The Penn State Mentor Program allows students with disabilities to attend college classes and build friendships with non-disabled students their own age. I see Kaleb taking part in this program after graduation.

Written by Christine Poorman, Learning Support Teacher
State College Area School District and Grandparent of Kaleb Brownson

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Stories of Success and Achievement

Why Does Pride Make You Cry?

Written by Fara Lippencott and posted on her blog May 12, 2009
http://faldesign.blogspot.com/2009/05/why-does-pride-make-you-cry.html

It’s a simple question. I never gave it much thought. I’m a big crier. I big, sobbing, red eyed, blotchy crier. I cry when I’m sad, I can cry when I’m happy, and I was a little taken aback when we took Jackson to his first organized sporting event and I welled up a bit. Eric had decided it was time to sign him up for something and we settled on baseball to be the best option. Here in town we have a short 6 week challenger baseball league. A wonderful organization for kids 6-18 with disabilities to come together and play just like all kids. we debated about signing up for the standard t-ball league but reflected on the fact that in the long term this is going to be the league he played in so why not start now. I held my breath. He enjoys playing in the backyard and at the park but as for following rules and playing a certain way, I wasn't quite sure how that would go.

He was excited for his first day of baseball. He even dug out his giant red plastic bat to bring along, didn't have the heart to tell him they would probably have bats there for him to use. He acclimated to the field right away! Started warming up playing catch with another boy. He was introduced to his buddy for the game (each week different little league teams pair up with a challenger team to help them along in their game). His buddy's name was Tyler that threw him for a little loop, how could there be TWO tillers!?!? But pretty soon with the help of dad and Tyler he got right in the mix and followed along.

He was the last on his team to go up to bat. He picked up his aluminum bat and went to the plate and looked back to make sure everyone was watching, and that's where it hit me. My eyes watered looking at his beaming smile. There was so much pride in me, overflowing, watching the pride in him as he took his stance and eyed up the pitcher. Swing and a miss, miss again, and then he connected! The slightest forward motion but everyone cheered and Tyler motioned for him to run to first base. On the way to first base he fielded his own ball and got redirected to second base and then around to third and home. He was told to touch first base which he did ever so intently, bent over in half with a single pointer finger! Everyone cheered and he stood up and took a bow! Ever the showman! As a photographer I was sure to bring the camera, but when questioned where the video camera was I hesitated and said "how exciting is this going to be?!?!" boy was I ever wrong! As we wiped our tears of laughter and joy from our eyes we grumbled at the fact that we didn't even get it on tape! How hysterical!

Time to switch it up and take the field. Now this is more of what I was anticipating. A little sitting down, a little playing with Tyler, and little of diving for balls lying in the field. That’s a hard concept to sit and wait for a ball to come your way. But for his first time out there he did great! And how awesome to be surrounded by the families who have gone before you. To see the friendships in the players excited to see each other at yet another game. To stop and think about the future and think about all he'll learn from playing ball and being part of a team. What a wonderful outing I can't wait for the next time. This time I’ll be sure to bring the video camera . . .

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Boy is just one of the band

by Dena Pauling

[This article appeared in the Centre Daily Times on Sunday September 14, 2008]

Before Alek Masters attended his first high school marching band practice, he drilled more than 40 hours on his own during summer vacation.

Not once did he complain.

He marched at Memorial Field. He marched in the parking lot. He marched up and down a ramp in the high school South Building. He marched in his backyard.

His heart was set on one goal — to play cymbals in the nationally recognized State College Area High School marching band.

But Alek, 14, has Down syndrome, a congenital disorder that causes mild to moderate retardation. He doesn’t understand the concepts of left and right. He doesn’t read music. His small hands make it difficult for him to hold the cymbals. His reaction time is slow.

He can’t possibly learn the motions and keep up with the rest of the 200- member band.

Can he?

Not once did anyone raise that question.

When he’s marching with “the big band,” he says it makes him “feel awesome.” And it’s as if his Down syndrome doesn’t exist.

“His dedication was more than I could have ever hoped for,” said Susie Lee, 19, a former member of the marching band who tutored Alek.

“He was so excited, and there was not one moment that he would complain. It was amazing. His disability was never a factor.”

Marching band has taught Alek more than music, and his relentless determination to succeed has been an inspiration to his teachers.

His parents say the band has brought out a side of their son they haven’t seen before. He wants to get out of bed in the morning, his academic skills have improved and he has friends he didn’t have before.

“He is just proud of the whole high school persona,” said his mother, Christine Masters.

“He’ll tell me sometimes when I’m explaining things in greater detail — ‘Mom, I’m in high school now.’ ”

More than music

Alek Masters’ interest in music began at an early age.

He played in the percussion section of his elementary and middle school bands. He watched his older brother, Bart, 20, play drums. His older sister, Stephanie, 18, performed in the marching band when she was in high school. And his twin sister, Sarah, 14, plays cymbals in the marching band as well.

His parents, Christine and Rob Masters, decided to ask their son if he wanted to join. He did, he said, “because I wanted to do it.” He said his favorite song is “Hey Baby.”

“It’s nice being able to have this in common with him,” Sarah Masters, his twin, said.

“We’ve done stuff together before but not something that takes up so much time. It’s nice being with him and seeing how much fun he has and how much fun we have together.”

Teachers said Alek learned to play the cymbals through audiation — his ability to hear the music in his head when it wasn’t physically playing.

Many elementary and middle school musicians don’t understand that concept, said John Kovalchick, a music teacher at Mount Nittany Middle School.

“The fact that he’s picked up these various techniques, even in something that seems as simple as cymbals, means he has made great progress,” he said.

His education special teacher said Alek has improved academically as well.

“Because of marching band, I see a difference in the classroom in reading, in math,” said Jenny Lee, whose daughter, Susie, tutored Alek. “His attention span is longer. He’s able to want it, because he can focus more.”

But he didn’t learn cymbals overnight.

“Practiced a lot, a lot!” Alek said. “Every day.”

After much brainstorming with her mother, Susie Lee tried several teaching methods to help Alek learn to march.

Getting him to start on his left foot was one of the greatest challenges, so Lee tied blue and red yarn around his legs to help his coordination. But that didn’t work so well, she said.

Lee then started chants, saying “This. That. This. That.” instead of “Left. Right. Left. Right.” — concepts he didn’t fully understand.

She made him a CD to practice with. They ran drill after drill until finally things started to click.

“You had to be flexible and creative and come up with things that would work,” she said. “A couple times I would question myself — do you think this is going well? My mom would say, ‘He is responding, just give it more repetition.’ She has that experience, and she can see a lot of the subtle things much more than I can.”

‘They know who I am’

When Alek attends practice, he’s not there long before someone says hello to him.

“We don’t make it three steps with at least two or three people hollering, ‘Hi, Alek. Hi, Alek,’ Sometimes they are right next to him on the sidewalk, sometimes clear across the grass,” Christine Masters said. “There are a lot of kids that just go out of their way to make contact.”

The camaraderie has given Alek Masters the chance to interact with peers outside special education. And before school started on Sept. 2, he already knew dozens of students.

“The other kids are fun,” he said. “We practice together and talk to kids and about ‘Ghost-busters’ at break. Everybody says hi. They know who I am.”

Before Susie Lee left to go back to West Chester University this fall, she said she talked to Alek’s band friends about what worked for her as his tutor. If he ever runs into trouble, they know how to help him.

“He fits right into the cymbal line. Of course he still has some challenges, but who doesn’t?” Lee said. “I was comfortable when I left. I knew it would go well for him and the band.” It has.

And it can for other parents of children with disabilities, Christine and Rob Masters said.

They hope their son’s experience will encourage families with a prenatal Down syndrome diagnosis to question their “ill-informed image,” they said, before choosing to terminate their pregnancies.

“Too often,” she said, “our kids are counted out early, even by those well-meaning individuals who are just trying to protect them and don’t want to see them reach too high and fail, causing them to miss out on great opportunities such as this.”

Ribbons to Rainbows

The sounds of horse whinnies and thumping hooves filled the night air at the Grange Fair this past weekend. Sleep eluded me as I tossed and turned in the camper parked by the horse stalls. My daughter, Brooke, has Down syndrome and she would be competing the next day in two Therapeutic events, The Obstacle Trail, Minimum Assistance, and the Walk Trot Equitation, Minimum Assistance at the District 4-H Horse Show.

Two weeks earlier at RoundUp, Brooke won first place in both events and proudly held up her blue ribbons as she celebrated her victory. Brooke’s achievements were uncontested but not effortless. She competed against the shadow of personal pride. She had done her best and was rewarded for this effort.

As her moment of opportunity to capture a District win came closer, Brooke’s “pit crew” which we now call the “barn crew” anxiously waited behind the fence. Phil McAfee, her instructor, walked her around the obstacle course explaining the pattern to her. Brooke and Phil, and Sammy his pony, have been practicing for this moment all year. But now, Brooke was suddenly faced with a difficult situation. She had to memorize new situations on the obstacle trail and navigate Sammy through the course. According to the rule book, “A lead rope may or may not be attached to the mount”. Phil asked me, “Do you want me to use the lead rope?”

I knew if a lead rope was attached to Sammy, Brooke would charter the course perfectly with Phil’s guidance. If I let her compete alone, I risked her making a mistake and losing a chance for her dream to compete at the State competition. I did not know anything about the other three children but I did know my daughter. So with a knot in my stomach I decided, “No lead rope.” A parent is never certain when it is the right time to let go of their child, but my husband and I both felt Brooke deserved the opportunity to take the reins herself, even if it meant not moving on.

As Phil, Brooke and Sammy started the course, my heart was pounding with pride, my eyes were filling with tears, my hands were shaking with excitement. I could barely focus my camera. Without flaw, mishap or hesitation she finished the course and lifted her hand in victory. It didn’t matter three more competitors needed their turn, she felt like a winner. The barn crew erupted.

Parents of special needs children know we seldom have an opportunity when we forget our child has a special need and we enter into the world of competition. My celebration immediately ceased when I painfully realized that while cheering for Brooke, I had silently begun my own private horse race in my heart with compassion and competition running side by side; only I was riding both horses. I was tortured with the irony of the fairness of competition between special needs children. The very group I passionately support I was now in competition with. Kodak flashes of emotions were ripping me apart and I did not have the answers or the time to categorize them.

I filed my thoughts as all four children finished and the final verdict was in. Brooke placed second in the event and was moving on to the State competition in Harrisburg. The “barn crew” cheered and I watched my daughter sitting tall and proud on Sammy, not really understanding what it all meant. She only knew she was loved and we were proud of her. I envied her world of innocence and freedom. She beamed over at me with her smile and proudly held up her red ribbon. I smiled back with a heart of pride and we were all wiping our eyes.

With the next event seconds away we had no time to celebrate or analyze. Phil asked me a question for the second time that day? Do you want me to use the lead rope? I didn’t realize it at the time but the real question was, who was I putting in the ring, compassion or competition? I began to question the definition of a winner. I told Phil, “No lead rope, let her do it alone.” With the barn crew behind her, Brooke was already a winner.

The riders went forward. She rode beautifully but suddenly the judge gave an instruction and Brooke began to turn Sammy in the wrong direction. She had made a mistake and it would cost her. As it turned out, perhaps her mishap gave another child their chance to go the State Competition. I believe that in allowing her to make her own choice, God took her mistake and turned it into someone else’s blessing. Maybe if we let go of our children and allow them to take the reins of their life, we allow the hand of God to direct them and others will be blessed.

Brooke lifted her red and yellow ribbons and smiled with pride at my husband and me. She asked me, “Mom how did I do?” She doesn’t even notice the numbers 2 and 3. I said “Brooke, your ribbons are beautiful, now you have a blue, red and yellow ribbon. You have a rainbow.” I am so blessed to live beneath this rainbow every day of my life.

My husband and I were not prepared for Brooke’s success. I enrolled her in the Galloping Gold Horse Club for social reasons. But their love for horses is addictive and we caught the fever. She would not be going to the States without the barn crew and their support. In October, she will be traveling to Harrisburg with a borrowed trailer. She will be riding Sammy, a borrowed pony with his own handicap; he is blind in his right eye. She will be smiling as she sits on top of a borrowed saddle that she feels at home in and using a borrowed bridle that will be polished by her little hands. She will be wearing boots that were broken in by someone else so they won’t hurt her feet. Her blanket tucked under her saddle is borrowed from a friend. And Sammy will have the hands of her 4-H friends all over him as they help Brooke groom and prepare him for his big day. Sammy, has added his own 2-H’s, to 4-H, the horse from heaven. It isn’t because I want Brooke to borrow all these things but somehow I feel like a piece of all of us will be in the ring with her. This is what our 4-H club is all about.

Brooke’s story has taught us that we are all judges in life and we all silently appoint ribbons (or opinions) to those around us. I wonder how many people I have unfairly pinned in last place with a simple glance. We all ride horses of compassion and competition but we get so blinded by our need to win, we forget we are holding the reins of choice. Brooke has taught me that the only ribbons that truly count are the ribbons of family and friends that surround us. I wish we could all see our life as Brooke does. Our victories and failures are not separate events but one beautiful continuous rainbow.

In October, when Brooke and another 4-H friend in her club, Abby, are in Harrisburg, Carrie Underwood may sing “Jesus take the wheel,” but our club will be singing “Jesus take the reins.” Brooke turns 16 on October 29 and no matter what the outcome is in Harrisburg, we will celebrate the most important thing, her life, her rainbow. Am I nervous? You bet. I worry I will forget to enjoy my daughter for who she is not what she does. But I have Brooke and a whole barn crew to remind me, that somewhere over the rainbow, skies are blue but somewhere under the rainbow there is Sammy and Brooke and the whole barn crew.

Breastfeeding an Infant with Down Syndrome

As a parent that has successfully been breastfeeding my daughter since she was born, I can attest to the fact that breastfeeding a child with Down Syndrome is an amazing and worthwhile experience. It is not a possibility that should be dismissed once you've discovered your baby has Down Syndrome.

There may be many people that tell you they tried and it didn't work because children with Down Syndrome have a tongue that thrusts itself forward when eating or drinking. This may be a slight obstacle that will need to be addressed, but it will not stop your child from satisfying a need for sustenance. The same action an infant uses to breastfeed is used to drink from a bottle! With the use of nipple shields and aid from local lactation consultants, you, too, can be successful.

I didn't suspect my daughter had Down Syndrome when she was first born, even with her being 3 ½ weeks early, so I treated her like my previous child and set to breastfeed her as soon as I could. Within the first hour of her life, she latched on without any trouble and drank from my breasts. She continued to breastfeed well up through the morning hours when my pediatrician came to me with her concern that Kara had Down Syndrome. Upon this announcement came a request to do a host of tests to make sure Kara didn't have any lung or heart problems. She spent the rest of the day connected to an EKG machine, an X-ray machine and an echo- cardiograph machine. Throughout all of this, she maintained a 3- hour feeding schedule and I didn't have any trouble keeping up with her. It wasn't until the following day, when she slept 6 hours because of being so exhausted from the previous day. She became badly jaundiced and had a hard time staying awake long enough to breastfeed. My breasts became too engorged and made it impossible for her tiny mouth to latch on. Because of all this, my 4.8 oz daughter lost more than 10% of her body weight. This did not deter me, although most of the nurses continued to tell me I should begin bottle- feeding her. I began pumping (for the first time in my life) in order to keep up my milk supply and provide breast milk to syringe feed her with. I tried every feeding to get her to latch on and if she wouldn't, I would syringe feed her while she was sucking on one of my fingers. I kept this up for a day and a half until her jaundice levels dropped. This took 24- hour time spent wrapped in a billy ruben blanket and feeding every 3 hours. At about 4 AM on Saturday morning, Kara woke up in the nursery and cried until a nurse brought her to me and suggested to try feeding her (even though she had eaten less than 3 hours prior). I tried and was in utter tears as she latched on and began feeding from me again. A day later, we left the hospital a happy couple as she was feeding off me again and her jaundice level was slowly decreasing.

With a visit from a wonderful lactation consultant the next day to reduce my worries and encourage me on with a few tips and tricks, I kept going in breastfeeding Kara and will continue hopefully until she is 2 years old.

If you would like more information about the benefits of breastfeeding your infant with Down Syndrome, you can go to the following links:

La Leche League

Australian Breastfeeding Association

Breastfeeding Essentials

Breastfeeding and Down Syndrome Resources

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