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Nico G. Barillas – The Rainmaker
There we were in Central America. We were newlywed in our 1st year of marriage when Nico was born. We were living in Panama City, Panama, on a work assignment and his arrival was a life changing experience, as most births are.
As our first child, not only were we learning the ropes of new born parenting, we were also trying to understand what we needed to do since he was diagnosed with Down syndrome in the 6th month of our pregnancy. Looking back, it is very obvious to us that we were not the first couple in this situation, but hindsight has always been 20/20.
Is he too hot, is he too cold? Did he eat enough, did he eat too much? Is he sleeping too much, why won’t he sleep? How soon is too soon for early intervention therapies? Numerous calls to Grandmas and our Pediatrician were surely part of everyone else’s first few weeks right?. We know these are the basics, but what we didn’t know, is that in a few short years later, he would be caring for us in ways immeasurable.
My wife Veronica has Multiple Sclerosis (MS). She was diagnosed seven years ago. MS is an autoimmune disease that attacks the central nervous system. Her diagnosis is relapsing/remitting. The short version is, it appears with no notice, and wipes out her mobility, vision and speech in various ways depending on the strength of the attack. When this happens, she is in need of immediate treatment via solumedrol infusions for days at a time with many weeks to recover. Unbelievably, we are blessed that with her type of MS, combined with her strength in fighting each attack, she has recovered 100% each time.
We have participated in fundraising for MS with an annual walk in our hometown of Des Moines, IA. The spring event has brought a serious purpose in our fight for a cure. Each year Team V is assembled and friends and family join us in person, as well as, with very generous donations. Since our team was formed, we have consistently been the #1 fundraising team in the North Central Chapter.
This year, Nico partnered with Veronica’s Mom (affectionately referred to as Gaga by her grandchildren) to be co-captains of Team V. With his vast network of contacts and Gaga’s leadership, Nico incredibly not only led Team V to the #1 spot for the 7th year in a row as they raised over $14,250, but he was the #1 individual fundraiser at $7,880.00!!! He was pushed proudly in his stroller by his mother and along with his Gaga, it was three generations of unconditional love regardless of an extra chromosome or the threat of another MS attack. A ‘Rainmaker’ is a term used to describe an executive or lawyer with serious income producing abilities and we found that in Nico and then some.
I couldn’t be prouder. Our home is one filled with love. Veronica is the type that turns words on a paper into a sweet sounding song. She has a heart full of love and a strength that is unmatched. Nico is the type that makes you melt with a smile and has shown us what life truly is about in less than 28 months. With the footprints of their lives in my heart, I fall asleep every night wondering how it is that my son has Down syndrome, my wife has MS and I am happier than most people I know.
The Day My Life Changed Forever
I found out I was pregnant in October 2005. I was going to be a mom for the first time and I couldn't wait!
The pregnancy was relatively uneventful. For the most part I enjoyed every moment, from the tiny kicks and movements to the excuses for eating that extra serving of Rocky Road. A few months into my pregnancy my OBGYN asked me if I wanted to do the AFP test, I declined. I had every intention of loving my baby no matter what, therefore this test, with a very high rate of false positives, was unnecessary. Now, I wonder if somehow deep down inside I knew that Tyler had Down syndrome.
Tyler was breech, so I was scheduled for a csection on June 29, 2006. I remember the evening of June 28, 2006 Shaun and I went out to dinner and a movie for one last date night before we officially became parents. That night I was filled with anxiety, I assume it was the fear of any first time mother. Though, now I wonder if somehow I knew something wasn't right. I really had no idea what was to lie ahead.
I remember lying in the OR that morning of June 29th, Shaun squeezing my hand and hearing the doctors scramble around pulling my baby from my womb. I couldn't hear him cry which terrified me. Then Shaun said “he's fine, he's crying, you just can't hear him.” His cry was so soft and faint. Shaun left my side to meet our son for the first time, and brought him to me. Tears rolled down my face as I was filled with joy. I remember saying “he's cute…he's really cute!” He was perfect, the most precious newborn I had ever seen. I had anticipated him not being very cute as some newborns are not. But not Tyler he was my little angel. I kissed his forehead and couldn't wait to spend the rest of my life getting to know him.
Seventy-two hours passed, no one told me he had Down Syndrome, but in my heart I felt something was wrong. Tyler did not pass his miconium, he was not feeding well and for a split second I thought I saw Down Syndrome in my son's face. I put the thought out of my mind the moment it entered it. I was terrified, as time passed I became more and more uneasy. Finally, the on call pediatrician made a decision to have Tyler transferred to the NICU at UC Davis Children's Hospital. I was devastated. The evening and days ahead were even more excruciating.
Our first morning at UC Davis, Shaun and I were at Tyler's bedside when a team of interns and a resident explained to us that they believed our son had Hirschsrpung's Disease and Down syndrome. In that second my heart was torn from my chest. I felt like I couldn't breathe. All my dreams for my "perfect" son were shattered. This was my worst nightmare unfolding right before me. Little did I know then what I know now: this wasn't the "end" of my world, it was the beginning.
It's been three years since that day. Along the way we have faced a number of challenges. However, attending Baby Steps classes made my terrifying journey a lot easier. I knew I wasn't alone in my walk. As a group we celebrated the milestones and supported one another during the difficult times. Baby Steps helped me come to realize that my son is perfect. He may not be perfect in the sense that I had originally thought, but as I have grown I have come to realize perfection is in the eye of the beholder.
Tyler is the most loving and friendly boy I know. Everyone who meets him falls in love with him instantly. He smiles, waves, and blows kisses to everyone! People I don't even know, know me because of Tyler. I wish I could have his sweet and unfailing heart. I wasn't sure why God chose me to be Tyler's mother, but now I think I may understand a little more clearly. Tyler has taught me so much about myself
He's taught me to be a fighter, to be strong, and to love unconditionally. He's taught me life isn't always “perfect” but to embrace what God's given you and be grateful for what you have, to smile when you feel like crying, and to take life one second at a time. I now thank God for choosing me instead of questioning why he chose me. It's not been an easy journey and I know I have many challenges that lie ahead, but with every new day and every new challenge I become a little bit stronger. That little boy has given me strength and courage that I didn't know I had. He's just absolutely amazing.
My Life with Tatiana
My name is Marco Casadont and I have a sister who was born with Down syndrome named Tatiana. She really likes baseball and likes to go to games almost as much as I do. This picture shows her and I with my friends and dad at the Giant’s stadium.
Sometimes I think life would be lame without Tatiana. Why? because she keeps me energetic and makes me laugh a lot. She surprises me by making my bed and getting it ready for me to sleep (like at a hotel).
I have learned not to stare at people who look or act different and I have a lot of patience. My friends learn just like me when they are with Tatiana. In the car on the way to the Giants game my friends and I watched "Elmo in Grouchland" and listened to "Supercalifragilisticsexpalidocious" very loud and that was okay! And I love her very much.
Ava Can Read
Ava has always had a great fondness for books and reading. Both of my kids have. I sometimes think to myself "How many more books can we squeeze on the shelves?" But there always seems to be room for more.
So it wasn't unusual that on a sunny spring day, after her nap, Ava and I were snuggled up on the sofa together with a book. We were reading a very simple book, one with a word on one page followed by the same word with an uncomplicated illustration. The entire book was in black and white.
We were reading along, enjoying ourselves with laughs, sound effects and sign language. When I turned to the page that read "ball," she signed ball, before I read it.
"Did she just read the word 'ball'?" No-it couldn't be. She's only 3 and has Down syndrome to boot. But then we got to "bird" and she did it again. In about a minute, she had signed the words ball, bird, house and eat--all before I had read the words.
I called my husband at work. "I think Ava just read the words ball, bird, house and eat." His response: "Really?!"
It seemed crazy, but we both started working with her and quickly realized that yes, she was indeed reading those words. All on her own. In all kinds of books and on flash cards. It was an amazing moment for us--and one that we completely didn't expect.
Today, at 4 1/2, Ava has very limited speech skills and also has the diagnosis of Childhood Apraxia of Speech. But she can sign up a storm, and thanks to her showing us, she is now sight reading well over 100 words. Her current IEP includes the goal that she will be sight reading 200+ words come April 2009. I'm thrilled to say that she's closing in on that goal. For over a year now, Ava receives weekly 1:1 tutoring in reading from Natalie Hale, Founder of Special Reads for Special Needs. We are also looking into getting Ava a touch screen computer to help enhance her reading skills.
I'll never forget a conversation I had with a kind nurse-turned-friend in the hospital when Ava was born. Nurse Chris has a son with DS and was a very welcome sounding board in those first few days. I very quickly realized how much Ava was going to teach me after I made an ignorant comment and Nurse Chris said to me, "Never, ever, underestimate your child."
How right she was. And how much I have to celebrate in all of Ava's abilities!
Amy Parham lives in Los Gatos, CA, with her husband Sean, son Reid (6 3/4 as he's sure to tell you), and Ava. She and her husband have a blog at www.parham.org.
She's still new to California and always looking to connect with more families of children with Down syndrome. She can be reached at amy@parham.org.
Special Reads for Special Needs is located in Los Gatos, CA. For more information, visit www.specialreads.com.
Confessions of a Grandpa
I recall the trepidation I felt when I first met my granddaughter Grace at the hospital, and learned she was born with Down syndrome. I was heartbroken, knowing her parents Traci and Mike would forever have to care for a special needs child, and would never have the satisfaction and pride I had enjoyed as I watched Traci grow up, becoming independent, winning accolades and honors in school, setting swim team records, graduating from college with honors and then watching her become a skilled intensive care nurse.
After a short time, I began to realize that the same satisfaction and pride I had enjoyed with Traci is there for all of us, Grandpa included, as we watch Grace learn and develop. She probably won't get straight A's in school, and I doubt she'll set a swim team record (but I do know she'll try!). However she just might win a dance contest. She is learning and dealing with her physical handicaps, beating her goals, and amazing her teachers and therapists at an amazing pace. Best of all, she is doing it with the quirkiest sense of humor I've ever seen, with patience and an insatiable zest for life, and with a smile that fills my heart with joy every time I see her. In short, she is living her life without holding anything back - as I like to say, with amazing grace.
When Grace was about one I remember going to a group meeting at the Down Syndrome Connection, where I listened to a new grandparent express his fears and concerns. He admitted he hadn't yet told his friends his grandchild was born with Down syndrome. I tried to assure him he wouldn't feel that way for long, but I don't think I did a very good job. I hadn't really thought about what allowed my fears and concerns to melt away so quickly and completely. Later I knew what I wanted to tell him. Quite simply, it was love, the complete love and trust that emanates from each and every sweet child.
Grace will be four in June. I'll be at her birthday party, along with her other relatives, her buddies and cousins, maybe a teacher or two. She'll smile at me, and call out "Gampa", and come over and pull on my eyebrows. And at that moment I'll be the happiest and proudest grandpa in the world.
A Safe Place to Go
My husband and I started trying for our first baby a few months after we married. We had a positive pregnancy test in December of 2006 and we were ecstatic for what our future was about to become. March rolled around and we found out we were having a boy and our screen test came back negative for having any chances of common chromosomal anomalies. This was the same day of our big ultrasound. We received a call the next day from the Kaiser Genetics office stating that my results had changed based on the drastic change in my due date. She then said I have a 1 in 13 chance that my son has Down syndrome. I was at work when I received this call so the news did not sink in until she started talking about coming in for counseling or having an amniocentesis performed to confirm it. We decided on the amnio. A week after the amnio was performed, the Geneticist called and I knew that it was not the news I wanted to hear. We went in to speak with the Genetics Counselor. They gave us an NDSS folder, a book about having a baby with Down syndrome, and a pamphlet for the Down Syndrome Connection of the Bay Area. They informed us that the Connection has a parent support group that meets monthly. We put off contacting the Connection for two months as it felt as if going to the meeting would make it a reality since our son was not born yet.
We went to our first meeting that June. Hearing other parents talk about their children at first was hard. A tiny tear would sneak out of my eye every now and then but I held it in really well considering my hormones. There was a baby there who was going to have heart surgery the very next day. Little did we know that we would be in the same boat 4 months after Oliver was born. At the meeting I kept watching this baby and looking at him thinking that he looks just like any other cute baby. There was also a sweet little girl there as well and Martha had me hold her. I was scared at first because I just met the people in the support group. However holding her did bring a sense of calm. Everyone went around the room and introduced themselves. They spoke about their trials and tribulations as well as milestones. After the meeting, Dan and I left smiling and were very glad we went. We are thankful that there is a place to go that is a safe place to talk and engage about our kids and our day to day life.
We went to the next months meeting where we learned more about having a child with Down syndrome. We received great information about the Regional Center and the services provided for our children. We heard great stories and we were glowing as we waited for our son's birthday. He was born later that week. We are happy to say that the Connection has been a great place for us. The monthly support meetings are wonderful. Helping fellow parents cope with the bad, sharing information that helps out everyone, and hearing about great things our little ones do. I've also attended a few Baby Steps classes. I wish I could come more often but my schedule doesn't allow it. Baby Steps is a great place for kids to engage with each other.
Having the Connection there for us has been great. It is a fantastic resource and it has touched our lives to be part of a group like this. I have a personal joy when there is a new couple at a group meeting who have just found out they are having a child with Down syndrome. I am proud to show my boy Oliver to them so they can see what a great little person he is and so they know it's going to be ok. That is exactly what we felt after we first came to the Connection.
"We're More Alike Than Different"
Last year, the American College of Obstetrics and Gynecology issued guidelines to all of its members recommending that every pregnancy be tested for Down syndrome, regardless of the maternal age factor.
With a new, highly accurate, non-invasive blood test right around the corner, it will soon be as simple to confirm an extra 21st chromosome as to confirm the pregnancy itself.
Already, a staggering 90% of babies who are prenatally diagnosed with Down syndrome are aborted.
Alarmed by the prospect of a world where our children are strangers, the National Down Syndrome Congress (ndsccenter.org), strategized on how to effectively help prospective parents recognize the gifts of people who have Down syndrome and meet the challenge of prenatal diagnostics with a positive response.
Thus was born the NDSC's "We're More Alike Than Different" campaign. An anonymous member-family generously issued a matching funds grant, to which people from all over responded with donations small and large, and the challenge was met. Although there is a continuing need for financing to air the television spots, production commenced immediately on the print campaign, and four adults in the United States were selected from audition tapes to participate in the production of several 30-second public service video announcements last January in Minneapolis.
We were thrilled when our daughter, Christi, was selected to participate. I had submitted an audition tape in which she expressed her driving ambition to be a bride, having been a flower girl, bridesmaid, and maid of honor in her older siblings' weddings. Endowed with the self-confidence that must reside on the 21st chromosome, giving our kids an extra dose, she couldn't be more proud of the work she did in that studio, supported by a top-notch professional production team. (And we certainly are "More Alike Than Different," because I always wanted to be in a commercial!)
Christi writes about the experience:
It was a blast being on a room with lots of cameras and lights. Martha did the costume changing and Mary did the make-up. I was one of four stars - they called us "talent." Steve, the director let me play around with the cameras after the shoot. Mark, Chris, Moira [the other "talents"] and I all became friends.
I hope everyone will see the commercials we made. The campaign is "We're More Alike Than Different," because people who have Down syndrome want the same things just like everybody else.
In one of my spots, I share my dream to be a bride. My dreams are coming true! In June, I got engaged when Austin, my fiancè, asked me to marry him and gave me a ring.
And when I see the sparkle on her finger match the sparkle in her eye, I know it's her self-determination that made this wonderful thing happen. I'm not sure how we'll work it all out, or what this modified-and-adapted-marriage will look like, but I am certain it's what she and Austin want, and that they know as well as anyone does what they are getting into! (Proving once again, we are "More Alike Than Different.")
Christi's life has been a tapestry of milestones far beyond the grim picture painted at her birth on Christmas Day, 1978, when we were told we didn't have to take her home from the hospital. Had we rejected her, we would have been turning down the best gift ever.
Just as we approach the point in our societal development where many people with Down syndrome in supportive environments are reading and writing - and texting and emailing, learning foreign languages, earning diplomas, attending college, learning to drive, competing for jobs, giving back through volunteering, establishing their own homes, falling in love and marrying, it is ironic that a pervasive, remnant sense of hopelessness about Down syndrome could condemn them to nearly disappear.
As Jiminy Cricket wisely pointed out, "If your heart is in your dream, no request is too extreme." It is my fervent hope that parents of young children who have Down syndrome continue to reach for the stars, because more than ever before, we must inspire those making life and death choices to recognize that typical children and our kids are More Alike Than Different.
Christi Hockel lives in Walnut Creek where she works for Safeway and volunteers for John Muir Medical Center. She is working on the wedding song list for the DJ.
Judie Hockel is contemplating the realization that this event will usurp any 50th wedding anniversary celebration plans she and her husband, Jack, might have had.
To watch a great video on being "more alike than different" go to this link: www.ndsccenter.org/morealike/flash
