Mom to Nicole – By Michelle Bowen

Receiving the news…
The moment Nicole was placed on my stomach after her birth, I knew. I was fortunate enough to have known a few children with Down syndrome, and I just saw it on her face. When I look back and think about it, I wasn’t surprised or sad. My husband took a lot longer to come around. I think Nicole was three before he could talk about it. They confirmed the diagnosis three days later. Our doctors were so nice, and I was so lucky not to have a bad experience.

Why I Spread Down Syndrome Awareness…
I feel it is important to spread awareness because there are so many people that have never met someone with Down syndrome. They only know what they have heard and have not experienced it. I am a hairstylist, and I educate people on a daily basis. I love it. I could talk about Nicole all day long. I always say the only stupid question is the one you don’t ask while continuing to believe the wrong information.  Every day I hear people respond, “I didn’t know that” when it comes to Down syndrome.

About My Nicole…
My favorite part of Nicole is her laugh and her smile. She makes me smile and laugh every day. She can be so silly but also so loving. I love hearing “I love you, Mom” all day long. She is so stubborn and hard headed, and I know that is going to help her achieve whatever she puts her mind to.

Nicole is also an awesome dancer. She has been taking dance for eight years, and she loves it. At her recital a few years ago, I watched from the audience and beamed with pride. When she was on stage performing no one could tell she was different, because she was just as skilled as her friends.  I loved that, and it was a very proud moment.

If I Had One Thing to Share…
Some thing I want parents just finding out about their sweet baby to know is even though things seem like they will never be “normal”  and Down syndrome will always be a factor…that is not true.  They are just your daughter/son, and their Down syndrome doesn’t matter.  I cried once thinking of all the things that Nicole would not be able to do, but she has proved me wrong and does so much more.  Today, she is a typical hormonal teenager who has crushes on boys, loves to get dressed up, loves to shop and loves to dance and sing! She loves the things she CAN do, and so do I.

Brother – By Janet Warakomski

My little brother David.  Born the week before my first birthday.  Born with Down syndrome.  We grew up together, he and I.  Sharing our birthdays each year; our birthday cake with candles at both ends; taking turns opening our gifts.  Playing together in our little pool; running and giggling in the sun; hitting a whiffle ball; sitting and drinking sodas; in our tiny backyard.  Watching TV together in the evening; singing the theme songs of our favorite shows.  David taught me the important things.  To touch the water faucet to check the water temperature, instead of burning my fingers in too hot water.  That fishing is good, and it is fun to catch a fish, but it’s also just as much fun to sit eat a sandwich from home.  To go to bed and rest when you are sick, so you will get well sooner.  To sing joyfully and with all of your heart.  To pray when you are worried, and that everything would be all right.

Our Mom died on a nearly-spring day in March, and David plunged into a grief so heavy that there was no help for him.  He was in the hospital on his 49th birthday.  In May of that year, near Mother’s Day, David’s kidneys began to fail.  Dad and I rushed to his side, and stayed with him.  There was my sweet little brother, so ill.  But he was glad we were there, saying “My sister” and “My Pop” and smiling.  Then came a stream of people to say goodbye.  My sister who hurried back home from a trip, 3 precious aunts, a beloved cousin who had rushed from work, all of the morning nurses as they finished their shift, all of the evening nurses as they came on duty, even the cook from his group home.

His funeral service was beautiful.  The little church was filled with loved ones; all of his family, old and new friends, long-time neighbors, his childhood friend and roommate, his girlfriend from the Workshop.  So many people.  We sang his favorite songs, “Jesus Loves Me” and “Bringing in the Sheaves”.  A much-needed tree was planted in his honor at his Workshop, to shade the people working outside.  A gazebo was erected in his name at his Group Home, and was specially designed as a quiet place for the residents to relax.

The doctors and specialists had advised my parents to “put him away” (as it was called in the 50s).  They told my parents that would be a burden to them, to me and to any future children they may have.  How wrong they were.  David touched so many hearts, changed so many lives in many ways.  No.  He was not a burden.  He was a treasure.

Patti Saylor to Testify Before Senate Subcommittee

**A message from the NDSC.

Law Enforcement Responses to Disabled Americans:  Promising Approaches for Protecting Public Safety

Hearing Before the Senate Judiciary Subcommittee on the Constitution, Civil Rights, and Human Rights

NDSC and NDSS are honored to announce that Patti Saylor, mother of Ethan Saylor, has been invited to testify and share her story at a hearing before the Senate Judiciary Subcommittee on The Constitution, Civil Rights and Human Rights, chaired by Senator Dick Durbin (D-IL), entitled “Law Enforcement Responses to Disabled Americans:  Promising Approaches for Protecting Public Safety” on Tuesday, April 29th at 10:00 AM.

Because of inadequate social and mental health services, law enforcement officers have increasingly become the first responders for individuals with mental illness or developmental disabilities who are in crisis. Recent high-profile tragedies, such as the senseless death of Patti Saylor’s son, Ethan, on January 12, 2013 during an incident with three off-duty sheriff’s deputies at his local movie theater in Frederick, Maryland, have demonstrated the need for law enforcement officers to receive additional training to safely address these situations. State and local law enforcement agencies have taken the lead in developing innovative solutions, such as Crisis Intervention Teams. Localities that use these approaches have seen fewer injuries and deaths among officers and people with mental illness or developmental disabilities, increased jail diversion rates, fewer lawsuits following crisis incidents, and stronger ties with the mental health and disability communities. This hearing will explore how Congress and the Executive Branch can support and strengthen these efforts.

Chairman Durbin invites advocates and stakeholders to offer their perspectives and experiences on these issues by submitting written testimony to be included in the hearing record. We encourage advocates who are unable to attend to submit a statement. These statements help educate Committee members about this issue and are important to demonstrating community interest.  Statements must be submitted as a PDF or Word Document of 10 pages or less, and should be emailed to Durbin_Testimony@Judiciary-dem.Senate.gov as early as possible, but no later than Monday, April 28, 2014 at 5:00 p.m. Please note that the Subcommittee cannot accept previously published information, such as newspaper articles or reports, as a statement for the record.

Susan Goodman                                            Sara Weir
National Down Syndrome Congress             National Down Syndrome Society
susan@ndsccenter.org
                                  sweir@ndss.org

Pierce, the Miracle Man – by Jenny Canfield

Receiving the news…
We did not find out that Pierce had Down syndrome until he was born.  I had a relatively easy pregnancy, besides the 17 weeks of getting sick at the beginning. We have two daughters and honestly thought we were about to have our third daughter. At 20 weeks, we found out we were having a boy.  We were excited and shocked. The rest of the pregnancy went by smoothly.  When he was born,  the umbilical cord was wrapped around his neck.  He was having trouble keeping his oxygen levels up, so I didn’t get to hold him right away.

When he was placed in my arms, I looked at him and made the comment that he looked just like our second daughter, Jovi.  I looked up and I really thought they were going to tell me he wasn’t going to make it, because my doctor and nurses were standing around my bed with terribly sad faces.  I didn’t understand because he was in my arms and breathing fine, with the help of the little oxygen mask laying in front of his face.  The NICU nurse looked at me and said that they think he has Down syndrome.

A million things flew through my mind as they continued to talk, like “I don’t see it at all. I wish I would have gotten the genetic testing done and found out earlier.”  Also, things as crazy as, “I wish I could put him back in my tummy” and ”What will my family pictures look like?”  All unimportant, but my brain was just overwhelmed.  My heart felt like it had stopped.

We found out for certain that Pierce had Down syndrome four days later, on our oldest daughter’s birthday.  I was devastated, and I cried.  Even with all the tears, I always loved Pierce.  I just wanted to get him home and start living a life as a family of five.

On our last day in the hospital with him, I sat there staring at this little miracle man who was just perfect.  I wrote this long story about my husband and me from our beginning to that moment on Facebook.  I didn’t want people “wondering” about Pierce.  It was therapeutic for me to get it out there and express my feelings to everyone we know.  Pierce did have Down syndrome, but he was already beating the odds.

I was ecstatic to take him home.  My daughters could not wait to have him home either and the love they had for him was overwhelming.

Today…
Pierce still amazes us. His sisters can’t get enough of him, and they love him unconditionally.

He sleeps 10 hours a night and takes two great naps every day.  He nurses like a champ and loves his rice cereal!  He is working hard on his head control and has already mastered trunk control.

Going back to when I initially thought I wished I had known before he was born, I am so glad I didn’t.  I would have spent half of my pregnancy worrying, being sad, and possibly detaching.  Having him in my arms when I found out, was the best thing for me.  It was difficult at first, but then I realized this is our path.  I am so excited to see how amazing all of our lives will be because of Pierce.  He reminds me daily that you cannot have preconceived ideas of who your children are going to be.  They will decide that, and they will surprise you every moment.

Why I Celebrate Down Syndrome…
For me it is important to spread Down syndrome awareness so when parents receive this news, it is not devastating, but brings a joyful, peaceful feeling to them.  I wish everyone could get a glimpse of what life is like with a child who has Down syndrome.  They would see the laughter, happiness, and understand that it is not a bad thing…just different then they originally thought.

I love seeing families with a child or children with Down syndrome and imagining what my Pierce will be like at that stage.  At the same time, I am enjoying his baby stage as much as I can, as I am aware of how fast it goes by.  I like to help the world understand something like 80% of children born with Down syndrome, mothers are ages 18-34.  I was unaware of that fact, and I couldn’t believe at 32,  I had a child with Down syndrome.  It is not just something that happens when you get “old.”

All around awareness needs to be had by all.  I think anyone who has known someone with Down syndrome will tell you what a joy they were to have in their life.  We are just at the beginning of our journey, but Pierce has already brought us so much joy and touched so many lives.

How I Make a Difference…
I have had to look to others who have children or a child with Down syndrome for support for my family and Pierce.  I am looking forward to my family becoming more involved with the DSAGSL.  We are participating in the Step Up For Down Syndrome Walk in June, and we attended the New Family Brunch at the end of March.

I think the best help we can give to people with Down syndrome is support and faith in them.  They need to have high expectations for themselves, just as any person does.  I have the same dreams and hopes for Pierce as I do with my other children…for them to grow up and be happy!

I will expect him to follow the same rules and expectations we hold in our home…be kind and loving to each other!  I will not let him give up, and already I know I have pushed him harder than I did with my girls at this age.

About my Pierce…
Pierce is a very happy baby!  He is only four months old, but loves to smile!  His smile brightens my days!  One of my favorite things he does is his “dance.”  He wiggles his bottom while he is laying on his back and his legs go back and forth.  It is adorable.

If I Had One Thing to Share…
People with Down syndrome are more alike than different from people without Down syndrome.  I think it can be scary because many people do not know enough about Down Syndrome.  The people and families I have met in the past four months who have a loved one with Down syndrome, say that their lives are better because of them.  It is a very small world, and people will come out of the wood work to tell you their stories and connections to Down syndrome.  I still have moments where I worry, but I immediately try not to spend time on what is to come.  Nothing can tell you the future.  You have to live each day in the moment (easier said than done) and that goes for all people in your life.

Pierce has reminded me that I don’t know what is to come with any of my children.  I have to enjoy the moment we are in and live for it.  I cannot worry about what my children will do or be later in life.  I love my little man and am glad that God chose me to be his mother!

Caring for Carter – by Krystal R.B. Lester

Diagnosed by Mom…
Carter was born ten days after my 42nd birthday and two weeks before his due date.  I had a feeling he was going to come that weekend because I had been telling the baby, as we did not know the sex of our child, that we didn’t have any plans that weekend.  So, if he or she wanted to come out the first weekend of June that would be just fine.  The baby having a mind of its own and already listening to mommy, did just that.

My husband went to work on Friday morning, June 1, 2012 after I had been having contractions every hour throughout the night.  I seriously thought it was no big deal since it was two weeks early and my first two boys had to be induced. My husband works out of town driving a semi truck to other parts of the state.  About two hours after I sent him on his way, I called him back.  I couldn’t drive myself in to town by that point; the contractions were too intense.  Carter Thomas Lester was born (with no name because we had not settled on a boy’s name) about 20 minutes after we arrived at the hospital.

My doctor does not believe in putting the baby on your belly after birth (which broke my heart), so they rushed the boy over to the little nursery area in my room and started working on him.  I asked them three times what was wrong with him, and the only answer they would give me is that he was not “pinking” up like they would like to see.  I could barely see him, but I could tell he was a little grey in color.  It was driving me nuts. I couldn’t move, my husband was glued to my side, and I had not seen my baby’s face yet.  They made the decision to take him from the room to put oxygen on him in the nursery.  This of course didn’t make me happy, because I wanted the bonding to start. I wanted to nurse and hold my baby.  The nurse brought him over to me and said, “Give him a kiss mom, and we will have him back soon.”  I turned to look into his sweet face and kiss him….I was in LOVE.  Right after I kissed him, I turned to my husband and said, “He has Down syndrome.”  My husband was on the phone with his mom and got off immediately saying to me, “How do you know?  Did they tell you?  What do you mean?”  He was very confused as was I, because no one would say anything to us.

I could feel the vibe in the room begin to change.  My OBGYN kept saying, “Oh, lots of babies are born funny looking, he doesn’t have Down syndrome.”  This made me angry, because why would anyone avoid the subject?  The nurses knew they had to say something to me before the pediatrician got there.  They all seemed uneducated about Down syndrome, and the room turned to gloom for a little bit as the nurse tried to explain what our next steps were going to be, like it was a sad thing.  I had a hard time understanding that.  There was nothing wrong with him.  He had a few heart issues in the beginning and some ear trouble that tubes corrected.

I could have cared less that he was born with Down syndrome, I was elated to see my baby, and he was perfect.  Was there a part of me that was sad at the loss of a “typical” child? Yes, of course.  I wouldn’t be human if I wasn’t.  I have a tendency to get sad when he is not making developmental progress like his peers, such as talking and walking.  Then I remind myself how lucky I am that he is so healthy, growing, and developing normally.  He just does it at a slower pace than his peers, which just means that I get to keep my baby longer than everyone else.

We had chosen not to do any genetic testing while pregnant because it would not have mattered.  I have worked with two kids with Down syndrome since 2006.  So, I think when I saw Carter I could tell by his facial features immediately.  And that’s how Carter was diagnosed by his mom.  Not a single test was run on his genetics before or after birth.

Why We CELEBRATE Down syndrome…
Even though I have worked with kids with Down syndrome for several years, it isn’t the same as having your own child with the genetic disorder.  No matter how much compassion you have, there is no comparison.  We just learned of World Down Syndrome Day last year on Facebook.  I ,of course, was on board right away and put up flyers all over the school where I work.  We didn’t get a lot of response because it was kind of short notice.  This year, the flyers went up early at our school and I am hoping for some crazy sock action!  To me and my family, every day is a day to celebrate Carter and all other individuals born with trisomy 21.  It makes them different yet the same as all of us.

How I Make a Difference…
I think the only thing I do that may be making a difference is by trying to bring awareness to people who don’t understand Down syndrome.  No one ever asks me if Carter has Down syndrome or even talks about it for that matter.  It seems taboo.  I want people to know that I will talk about it all day long.  I feel so blessed to have such an amazing individual to raise.

My Carter…
There are so many things about Carter I love and there really isn’t anything I don’t like.  He has figured out how to make us laugh, and he loves to laugh himself.  His giggle is so contagious there is no way you can stop yourself from laughing when he giggles or laughs.  He has just recently learned how to say, “I love you” and he tells us often without prompting.  He may not know what it means yet, but it melts my heart every time.  I think he knows that.  Everywhere we go, he gets tons of attention and he hams it up!  He is very rarely upset.  If he does get upset, it is usually because he is tired.  He is so incredibly sweet.

What I Want to Share…
We were confused, scared, and sad just like any other parents would be at first. My husband was probably a little more upset than me when we noticed the Down syndrome, because he had never been around anyone with Down syndrome.  I had.

Carter has two older brothers by my previous marriage.  Tanner is 17, and Jakob is 15.  They are the most incredible brothers anyone could ever have, and Carter is so lucky to have them.  He is so in love with them.  They literally fight over him; who is going to hold him, who will get him up from his nap, and who will get to him first when they come home from their Dad’s house.  They have such an unconditional, unselfconscious love for him.  I have never seen such love.  I often think to myself what great Daddies’ they will be!

In the 21 months Carter has been with us we have been very educated, and we are enjoying every step of our journey.  We have learned so much about ourselves, Carter, and people with and without Down syndrome.

Lily Jackson’s Message

Lily Jackson, a 7th grader in the Fort Zumwalt School District wrote and shared a speech with her entire school in celebration of World Down Syndrome Day! Way to go, Lily!

I want to write this story about me having Down syndrome so my friends will understand and treat me the same.  When my friends don’t treat me the same I feel different.  I want my friends to be nice and help me when I don’t understand things.  I would like my friends to listen to my feelings without having a fit and judging me.  Most people think that having Down syndrome means that you have an extra chromosome, but I think of it as having a little extra sugar.  I’m proud of myself.  I am a good friend, nice typical kid, beautiful and independent.

Even though I have a disability, I still do things like the other persons can do.  I am a cheerleader.  I am in a swim program.  I am on a tumbling team.  I like to watch movies, put on makeup, listen to music and play on my iPad.

Most of my classes are with kids with learning disabilities and a few classes are with kids that don’t have learning disabilities.  I have two paras that help me with the stuff that I don’t understand so I can get it done.  When I’m in a class without either of my two paras, there are teachers and other paras that can help me.  I want to get all my work done and have good grades at WMS before I go to WHS.

After high school I want to go to cosmetology school to become a makeup artist.  To prepare myself I watch YouTube makeup videos.  I also practice putting makeup on my dummy head, my mom, myself, Hannah and even my grandpa.  I like to read and look at pictures in the Bobby Brown makeup book for tweens/teens.  I may not learn things the same as other people, but I’m easy going to try my best even if its hard and I know I can do just about anything.  Sometimes I feel like people only see the outside of me and not the inside of me like my opinions, feelings and how I think.

I don’t mind having Down syndrome because my friends help me.  I’d like people that don’t know me to get to know me for who I am, treat me nice – the same not different.  Most of all, I want everyone to be my awesome friend.