Featured Articles
Cooper’s Troopers Help Spread the Word to End the R-Word
On playgrounds, in classrooms, homes and parks all over America, kids and their parents use the words “retarded” and “retard” with no regard or knowledge as to how it affects people with disabilities and those who love them. We in this community have all heard it and then felt our hearts and moods sink. We think, “Do I have the courage to say something?” “What should I say?” “Will I offend them (even though they just offended me)?” I’ve tried several versions of these responses and some direct retorts. For me, it often depends on my relationship with the offending party. I find it easier to tell people that I’m not as close to and easiest to tell children, perhaps because I feel that they’re more educable than adults.
My 11 year-old son, Oliver, has been struggling with this issue at school for several months now. He has come home in tears, hidden at school to cry and confided to me that he is so hurt by the words, but simply can’t get the nerve to respond. It’s hard to find courage when your heart is so deeply pained, and both Oliver and I have a big piece of our hearts devoted to Eli, my 14 year old son with Down syndrome.
Oliver, his teachers, and I came up with a plan – a plan that called on Cooper’s Troopers! Cooper ’s Troopers (self-named) are an amazing bunch of kids that has evolved as a Circle of Friends group since Eli was in 5th grade. He’s now in 8th – still fully included. Currently, the group consists of all boys and for some reason they’re all much taller than I am – admittedly not hard to do. They meet weekly after lunch with Eli and either play a game, watch a movie clip from Eli’s latest movie obsession, talk, or work on a project.
Last year during the month of October, Down syndrome awareness month, the boys created a PowerPoint presentation entitled Understanding Eli Cooper – His Life with Down Syndrome. They presented this to each of Eli’s classes after we invited Eli and some of the Troopers to visit Oliver’s school to deliver their presentation, lead a Q & A session (along with me to help answer some of the questions), and then lead a discussion based on the “Spread the Word to End the Word” campaign.
They presented to a group of more than 60 4–8th grade students, teachers and staff. The Troopers discussed what Down syndrome is, how it happens and explained some of the supports and modifications that allow Eli to be successful at school. Eli joined in, told funny stories and demonstrated his flexibility and powerful wrestling skills by taking one of the Troopers to the mat. I then explained to the kids that when they, or anyone, says the word retard(ed), it pains me and others who love Eli. I told them that now that they know this information, to say it anymore is actually bullying – it’s picking on a group of people who are vulnerable, ,and likely unable to defend themselves.
The Troopers sported their “Spread the Word to End the Word” t-shirts and handed out “Spread the Word” wristbands and pledge cards to all of the students. Every person in attendance that day took the pledge. Already, Oliver’s heart – and mine – are lightened.Lightened by not hearing as much of a word that puts down Eli. Lightened by seeing the true love, support and dedication that those adolescent Troopers have! And lightened by knowing that we helped spread the word to end the word.
Update: There is no doubt we educated the group of kids at Oliver’s school. He reports thathe’s only heard the word once in the almost two weeks since we held the assembly and in that case the kid caught himself and then apologized. Prior to the assembly, it was heard several times a day. For more information on Spread the Word to End the Word go to www.r-word.org.
Dream Team
Transiti on. The Webster defi niti on of transiti on is: a passing from one conditi on, form, stage, acti vity, place, etc. to another. Joaquin's defi niti on wasn't quite so clear and simple. To him, transiti on meant headaches, stomachaches, asthma att acks, trouble sleeping, anxiety, and abandonment.
I received so much informati on about the "transiti on" into elementary school when Joaquin was only a year old. You would have thought I would dive right into all that informati on. I didn't. I knew that school was such a long way away, I would worry about it later. Well…later came and later went. At the ti me Joaquin was supposed to start kindergarten, we were living in Hayward. We went through all the IEP meeti ngs, all the diff erent testi ng and placement exercises which, to say the least, were incredibly diffi cult for Joaquin due to his anxiety with strangers. Joaquin was placed in a severely handicapped special day class.
The day I left my son at elementary school for the fi rst ti me was the day I drove home in tears. My only comfort was trusti ng the staff would care for my child the way he deserved. As it turned out, Joaquin had a horrible experience and was in a full-blown asthma att ack when I arrived at the school. Aft er speaking with the teachers and aides, I immediately removed Joaquin from that school. I was in awe of the lack of care, compassion, and professionalism the staff showed towards my son. Joaquin simply was not "emoti onally" ready for kindergarten is what we were told.
A year passed and we moved to Salida in Stanislaus County. The school year was quickly approaching, as was my fear of placing Joaquin in another school. I had lost all hope that anyone would be able to accommodate Joaquin's needs. I had lost faith in the school systems. I had lost all trust in the teachers and their aides to care for Joaquin. I felt like I had failed him. How could Joaquin ever trust any teachers again aft er being treated so horribly before? How would Joaquin view me as his mom, leaving him in the care of complete strangers…again??
Then came along what I call "The Dream Team." Joaquin was placed at Chrysler Elementary School in Modesto with an incredible teacher, Mr.Nick Puccinelli, and his aides Mr. Alex Serrato, Ms.Diane Nixon, and Ms.Kathy Medsger. These people have proven that Joaquin can and will thrive in a classroom setti ng; that Joaquin can overcome his anxiety and fear with the proper care and structure he needs and deserves. They show not only professionalism but compassion for these wonderful blessings we call our children.
There are 12 students in Joaquin's class, most classifi ed as severely handicapped. Aft er sitti ng in the class a litt le over a week, hours at a ti me, I can see how Mr. Puccinelli and his aides work as a team to make the classroom environment comfortable and safe. With such a wide range of emoti onal and physical disabiliti es among their students, they incorporate each child into whatever acti vity they may be doing; students are treated as individuals with individual needs.
The concept is so simple: respect and nurture these children and they will succeed. It was an absolute pleasure watching each of them work together for these amazing children. They all have restored my hope that Joaquin can enjoy his peers, that he can enjoy learning, and, most importantly, that he can learn to trust again.
My purpose in writi ng this arti cle was to not only give Joaquin's "Dream Team" the recogniti on they deserve, but to tell other parents whose children may be struggling in the school system that nothing is set in stone! We, as their parents, have every right to questi on and observe. If you're not comfortable, follow your insti ncts. We will forever be their biggest advocates. Thank you again "Dream Team." Most importantly, Joaquin thanks you!!!
Cole Kelley – My Everything
My name is Samantha Kelley and I have a younger brother with Down syndrome. Three years ago, when I was a junior in high school, I was asked to come and give a talk to a group of over 200 seventh and eighth grade kids at my church. I was asked to talk about a "desert time," or a hard time in my life. A time when I felt lost and didn't have all the answers. I also had to talk about how I got through it and how it changed me. I didn't realize that when I was asked to do this, it would be me who would learn and be truly rewarded. I had never talked about this experience with anyone and I had never let anyone in on how I felt. Though I was put in a vulnerable position, opening up about this experience to an audience of strangers allowed me to think back and reflect on what I went through and how much this little boy truly changed my life. Below is a written version of the talk I gave.
When I was in eighth grade, I found out my mom was going to have a baby. At first it was a little hard to get used to. It had always been just me and my brother, Shane, who is two years younger than me. I was comfortable with that and I wasn't sure I wanted our situation to change. Soon enough my family and friends found out and since they were excited about it, I began to accept the idea of something new and I became excited.
I really wanted the baby to be a boy. Shane and I both wanted a brother. My parents hadn't planned on finding out what the baby was going to be but when they did, they told us we were going to have a brother. At that moment it was like my wish had come true and I immediately started thinking about who I wanted him to be. Mainly, I wanted him to be an athlete. I pictured him being this all-star player. I wanted to be able to go to football games and basketball games. I had all these thoughts and ideas about the kind of person he was going to be. I wanted him to be this kid that everyone loved and admired.
On April 23, 2005, Cole was born. I had fallen asleep in the waiting room, so when we went in to see him I was a little out of it. I remember standing in a corner of the room when the doctor came in to examine my brother, to make sure everything was ok. He walked over to him and when he was done, he walked over to my parents and started to talk. I wasn't really paying attention but I remember hearing him say "signs of Downs."
My first reaction was "What does that mean? What does he mean by Downs?" Honestly, I knew what he meant but I wanted so badly for it to be wrong. When I realized he was talking about Down syndrome, I lost it. There was a bathroom in the room so I just went for it. I closed the door behind me, locked it, sank to the floor and cried. At that moment, everything I hoped he would do or become was gone. But it wasn't the realization that he may not be the person I imagined him being that upset me. It was the fact that he could have a disability; that he might have something that was going to hold him back from doing what he wanted. I didn't want that for him. I never wanted him to feel different or that he didn't belong. No one wants that for someone they love.
I remember letting my dad in the bathroom and I'll never forget what he said to me. He said, "You may not get what you wanted, an all star athlete, but he's going to be great and you're not going to love him any less." He was right. When we found out the test results showed he had Down syndrome, I reacted better. I think it was because I was more mentally prepared. Knowing the facts, I expected it. In my heart I knew he did.
During the time that we waited for the results to come back, I prayed so hard that he didn't have it. I didn't want that for him. But then I remembered something that I had heard before. "Some of God's greatest gifts are unanswered prayers." And it is so true.
Through Cole, my parents met a lot of amazing people going through the same things they were, I became more educated on Down syndrome, and we became a part of something so much bigger.
I have never been the kind of person who asks for help or who leans on someone else to get me through a time when I don't have all the answers. I have always dealt with it myself. Someone telling me it was going to be ok didn't work for me. I had to experience it. Cole helps me experience it every day. He lets me know it's ok because he shows me every day that he is ok. He is strong and so smart, and funny. He makes me laugh.
He is not a burden to us and his disability is definitely not a burden to him. Do I wish he didn't have Downs? Yea, I guess, but do I love him any less because of it? Not a chance. I t's not possible. I love that little boy more than anything.
Nothing is what it seems at first glance and we tend to judge too quickly. But if you just give life a chance to prove you wrong, it will. We may not understand the things that God does, but he does them with a purpose. We need to trust that. No hard time stays that way forever. You have to look past it and push through, believing that everything happens for a reason. Whatever it is that is causing you doubt, you'll come to find you might need it and can't live without it. It could turn out to be more than you ever expected. It can turn out to be Your Everything.
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.
