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Confessions of a Grandpa

By Steve Schendel

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.

Brandon (A Grandparent's Perspective)

By John and Judi Garcia

On October 7, 2004 our son came out of the delivery room with the doctor. The first thing he said to us was that Brandon was born with Down syndrome.

We have to be honest. Our first reaction was that it took us back; we were confused, not knowing what that would mean to our son and his family. Then a very short time later, they had to rush Brandon to ICU, with the possibility of congestive heart failure. All of a sudden Down syndrome wasn't a serious problem to face. Our prayers were please do not take our grandson.

Well here we are 3 1/2 yrs later. Brandon is a healthy active toddler and is the joy of our lives. He is never in a bad mood. He loves unconditionally. When he first sees us he always gives us the biggest hugs and kisses. We have enjoyed watching him develop into a special little boy and appreciate all the assistance he has received along the way.

Brandon has taught us how to do sign language. He is starting to say a number of words, but he knows how to communicate and tell us exactly what he wants. We cannot be around him without smiling and laughing. He is such a joy and he has made us better people. We have enjoyed meeting so many families at the Down Syndrome Connection of the Bay Area. They are all so involved in getting to know more about Down syndrome.

We believe that Brandon is truly our gift from God. So many people have said how lucky Brandon is to have been born to our family, but in reality we are the lucky ones. He has shown us that the only handicap a person has is his own prejudice. We have four wonderful grandchildren, Brandon being the third. They are all very special to us, but Brandon, is the one that brings light to everyone's day.

John and Judi Garcia

Amelia's Story

By Jim and Katarzyna Bibles

Katarzyna and I founded the Cajun Fest in October 2006 to support the Down Syndrome Connection of the Bay Area (DSCBA). As expecting parents of a child with Down syndrome the DSCBA was and still is the only organization in the bay area we could go to find detailed information on the challenges we may face as parents of a child with Down syndrome and to talk to other families. The DSCBA gave us hope, as we were able to see the joy and love other families possessed. Once Amelia (our youngest daughter) was born we became active members. Amelia and Katarzyna (and sometimes our other daughter Nadia) would go to mommy and me music classes, we attended parent support groups, and our whole family experienced first hand the love and support of the Down syndrome community. Most importantly, the DSCBA gave us the tools we needed to turn what could have been a very difficult time into one of the most joyful times of our lives.

Shortly before the inaugural event, our daughter Amelia was diagnosed with and hospitalized for Primary Pulmonary Hyper Tension. This is a rare complication that resulted from heart surgery in the previous year to repair an Atrial Septal Defect (a common condition among children with Down's). Unfortunately, while she thrived after her heart surgery, she was not strong enough to withstand the setback, and passed away shortly after the event. That is why the event is now called Cajun Fest - A memoriam for Amelia Bibles.

The support that you give to the Down Syndrome Connection of the Bay Area will ensure that children like Amelia and their parents will continue to have a warm and loving non-profit organization that provides the tools they need to navigate the emotional and physical issues associated with Down syndrome, live happy and fulfilling lives, and be productive members of society.

Thank you for your consideration

Jim and Katarzyna Bibles

They Inspire Me

By Bernadette Fatehi

Raise your hand if you've asked yourself why you were made the parent of a child with Down syndrome (or any child with special needs, for that matter.) I have asked myself that question a few times since Lily was born. There's got to be a reason.

It has occurred to me that up until about a year ago I still felt like I hadn't become what I was supposed to be "when I grew up." I have had many jobs in my life; I've tried lots of different things to feel fulfilled. Still, it is only recently that I feel like I have a real purpose.

Lily is almost four years old now and it's become clear to me that she is destined to be a star. I know, I know. I'm her mom; of course I would say that. I am serious though; she is one of the souls that moves through this world and makes a difference in people's lives every day. I see it all the time. When we go to the grocery store and I am trying to find bananas that are just right for eating tomorrow. Inevitably, someone is quietly watching us while Lily is saying, "Mom, let me do it, let me do it." She wants to choose the ones that will go into the bag. I try to remember that every exercise and experience is an education for her. At the same time, it is an education for those who watch her in the store, at the pool, at the library, at the service station while we get the car's oil changed. Those who know a child with Down syndrome know the delights they behold.

Those who don't, I think, are amazed at the intelligence and charm our children have.

Quite awhile back I found a quote in some article I was reading. The quote is from an unknown source and reads, "Inclusion of children with special needs in all environments in which typical children participate is critical to their development and achievement of their potential." I clipped it out and taped it onto our refrigerator along with all the other magnetic collectibles, artwork, and photos that live there. I wish I knew who wrote it, because I would like to thank that person for giving me such a practical philosophy to live by. How could I make that "inclusion" happen for Lily? She is in a segregated special education class and unfortunately with the way the system currently works, that is where she will remain for the time being. That's when I got the inspiration to start Buddy Play. I felt like someone lit a fire under me, that I had to hurry up and give Lily something more to help her reach higher. People put playgroups together all the time; why not start one myself that would provide more opportunity for role-modeling? After all the time I had spent volunteering in Lily's classes, I realized I had learned a thing or two about incorporating various therapies into fun, kidfriendly activities. Yes, I was definitely inspired.

I think everyone would be lucky to have someone in their lives that inspired them the way Lily inspires me. She is the reason I started Buddy Play, a playgroup for children with special needs and their typically developing peers. Buddy Play offers themed playgroups that provide activities to promote exercise in developmental skills. Since October 2007, I have been coordinating the playgroups and inviting all children with or without special needs to participate. Our first Buddy Play was a play dough party in the park. There was a mix of kids with special needs and typically developing kids that spent the afternoon together playing harmoniously with the colorful dough. That day was the first of many fun and rewarding experiences that have continued whenever our group meets. We have read stories to each other, decorated Christmas cookies, created snowflake art, been tattooed together, crafted old-fashioned Valentines, made pizza, and arranged beautiful Spring flowers, just to mention a few activities.

Along the way, the kids have learned some American Sign Language they may not have used before, sung some songs with a great music therapist, Nicole Patton, and made new friendships to last for years to come. I love to see the kids help and support each other as they interact. Sometimes the typical children, (what I call the TD kids) will ask a question about one of the kids with special needs. It's always a great opportunity to let them know that some of the kids have different abilities and may need some extra help, but are basically there to have fun just like them. Some of the parents have told me that they appreciate having a social group where their kids are safe, accepted, and their wide range of abilities is considered and accommodated.

The kids with special needs have received help and rolemodeling from our TD kids, while our TD kids have learned empathy and how to be a good "buddy" to their peers with special needs. As for the parents, I think they have enjoyed watching all that happens at Buddy Play just as much as I have. I always leave with a very gratified feeling, and a brain churning with new ideas for future groups.

Now, let me say, that as with most movements and ideas, Buddy Play has only grown and been successful with help coming from all directions. Martha Hogan offered the classroom at Down Syndrome Connection for one of our meeting places, Kathryn Valdez from the Hope Center offered another. Several of the mothers who bring their children on a regular basis have been an enormous help. They have taken turns bringing snacks for the kids, vacuumed up after we've made a mess, or helped to do an activity. Many people answered the call when my own mother did some secret fund-raising without my knowledge. Apparently there are a lot of guardian angels who have high hopes for Buddy Play and want to help make it a success! It has taken on a life of its own.

So... now when I ask why I was made the mother of a child with Down syndrome, I have an answer for myself. It's to do what I can for Lily and all the other kids that come to Buddy Play. I love them. I want to be around them. They inspire me more than anything ever has before!

If you would like more information about Buddy Play and a schedule of playgroups, please visit our website at www.buddyplay.org

Ten Ways to Take Charge of Your Child's IEP Meeting or Family Support Plan

By Janet Holmes

1. Be first - make sure you talk first. Don't be afraid to lead the IEP meeting. Bring notes, take notes and make all introductions yourself. It's your school, your teachers, your child. Put your priorities on the table for discussion first.
2. Build a strong base of information. You know your child. Get to know his school behavior, attend his class for a substantial amount of time. Be sure to use the appropriate visiting procedures but don't be afraid to make a surprise visit. During the IEP meeting ask questions if you do not understand. You are the expert for your child, but you are not expected to understand all school terminology.
3. Know your rights. Public Law has given all parents rights and schools legal responsibilities. How can you advocate for important issues if you're not sure you are right? Local family and state organizations hold workshops for parents. Find them!
4. Bring notes-make your own goals for your child. Start with making long-term goals for your child and family. Take your own notes to the meeting and write long- and short-term objectives in your words. It is appropriate to include your suggestions, you should expect nothing less.
5. Know how to say no - be gracefully firm. Take a firm stand on important issues and only important ones. Be willing to compromise and don't expect to get it all. Choose your fight carefully, and then use the phrase "that is unacceptable." Have your argument ready, but always speak carefully. Get areas of disagreement written on the plan or, better yet, go home and write a letter to attach to the IEP. Don't be rushed into accepting anything; IEP's can be continued at a later date. The IEP will go forward without your signature, but you need to document your disagreement in case you wish to take the issue to due process.
6. Make friends - at school. Always support your school and teacher. Be the room mother, volunteer to help whenever you can. If you are respected as a supporter of the school, you are more likely to be respected at the IEP. Let people know you appreciate them, make positive comments. A few kind words can only open doors for you and your child.
7. Keep your cool - angry parents are sometimes written off. Although anger is sometimes needed to get your point across, remember, parents who lose their temper are quickly labeled as uncooperative and unreasonable which can make it easier for personnel to gather others against your ideas and concerns.
8. Keep records - put it on paper. Maintain records for your child. Put all your correspondence in the file. Make every IEP request in writing and ask for a written response. Check every so often to see if your correspondences are included.
9. End your IEP - with a good check up. At the end of the IEP, make sure all of your points have been included. Check up on the promises, goals, and objectives that were agreed upon at the meeting. It is your job to monitor the IEP plan.

Observations on Conversations with Young Adults with DS

The National Organization of Parents & Professionals Volume 25, Number 6
By James D. MacDonald, Ph.D., Columbus, Ohio

MacDonald, a clinician and researcher with people with language disorders, was a professor of Speech-Language-Pathology and director of the parent-child communication clinic at the Nisonger Center at Ohio State University from 1971 to 1995. Since 1995, he has directed the Communicating Partners Center. MacDonald, a frequent speaker at NDSC Conventions, was a presenter at the 2002 NDSC Convention in Denver, including at the Youth and Adult Conference.

While I Denver, I spoke to two groups of people with Down syndrome over 16 years of age; most were in their twenties and thirties.

Actually, what we did was have an audience-type talk show. I talked briefly about some keys to having a conversation, and then I asked them to tell about their best conversational partner. I bet over 70 percent of the hands went up furiously. I tried to have little conversations with many of the folks and in the three hours came back with a few observations.

• Most said that conversations were very important to them.
• Some seemed to think that conversation simply meant talking and saying as much as is on their minds.
• Some knew that conversations mean to take turns and let others talk as well.
• Most of their favorite conversational partners were either friends they made at the convention or their "boyfriend" or "girlfriend."
• Many said they had been hurt in conversations by people who make fun of them.

I have several very tentative conclusions that may help parents think about the future:

• Young adults with DS do want to talk to people.
• They often talk in monologues rather than in back and forth conversations.
• They often ignore what their partner says and have a hard time responding to what others say.
• They often play a very passive role in conversations and need quite a bit of silent waiting to get them started.
• Some are afraid that others will make fun of them.
• They sometimes have difficulty staying on one topic for more than a few exchanges.
• They sometimes need help to find what to say.

They sometimes need to be reminded to respond to what the other person talks about.

I had a wonderful time. And this experience makes me what to encourage all of you parents of young children to remember two absolutely important skills that make a huge difference as children age:

Taking turns-unless a child takes turns, he will be unlikely to build friendships and learn from others. I spoke with many young adults who knew that talking was much more than performing; they said one thing then waited for me to talk and they stayed in conversations on one topic for several turns. Some did not seem to take turns much and they seemed more isolated than the ones that did.

Responding to what the conversation partner says-it made such a difference to me when the person responded to what I said rather than just continue on with what they were saying. It is not enough for someone to learn to talk; they need to learn to talk about what their partners talk about. Otherwise, most people will lose interest and not build a relationship with them.

And, my point is that it is not too soon to teach your child these two critical skills; taking turns and responding to what you do and say. It saddens me to see so many wonderful people who have a great deal of language to seem so quiet and alone when they have not learned to take turns and talk about what others are interested in.

A Safe Place to Go

By Nada Nakahara

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"

By Judie Hockel

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

Nico G. Barillas – The Rainmaker

Marty Barillas

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

Raquel O'Keefe

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

Marco Casadont

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

Amy Parham

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.