Loving and Living with Down Syndrome

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Publisher’s Note: The following is an up close look at life with Down Syndrome. This story was originally printed in the Trbune five years ago. It runs here again today to recognize 3-21, World Down Syndrome Day. It is uncut and unedited and comes from the mother of a child living with Down Syndrome. Kate is now five years older, and doing great. She is featured on the front page of this week's print edition. She is the daughter of Jim and Meredith Brooks, big sister to Noble and the little sister of Halle Brooks. Our readers may also know her as the granddaughter of Robby and Betty Bates, and the niece of Robb and Amanda Bates. Know her, or not, she is a beautiful child, and this story is important, not just today, but every day.

 

By Meredith Bates Brooks

When Kate was born Aug. 3, 2011, everything seemed wonderful and normal. However we did not know until three days later that she had Down Syndrome. With some babies it is very obvious when they are born that they have Down Syndrome, but with Kate it was not as obvious. The night after she was born she was admitted to the NICU for poor coloration and difficulty breathing. We later discovered that she had four holes in her heart and later told that the doctors wanted to test her for Trisomy 21, also known as Down Syndrome. Kate had a single palmer crease along  her hand which is one of the many traits individuals with Down Syndrome may have. While we were worried, we really didn’t think it was possible because she looked so much like her sister. The next day the test results came back and confirmed that she did have Trisomy 21. Sadly the doctor who broke the news to us was not the best informed on Down Syndrome. The first thing he told us was that she wouldn’t live very long and wouldn’t be able to do what other children are capable of doing. He couldn’t have been more wrong! After he left the room, my husband and I talked about how God knew we would take care of any child He put into our arms and knew that He put Kate in a family that would love her no matter what and would do anything for her.  We were determined that she would have the same opportunities and chances in life that our oldest daughter would have and that we would do everything possible to help her reach her dreams and desires. We knew from that day forward that God had special plans for Kate just like He does for any child! 

What does it mean to you personally to raise a child with Down Syndrome?

Raising a child with Down Syndrome means that we take one breath at a time and cherish it. We do that with our oldest daughter, but we didn’t realize until Kate was sent to us to really appreciate the small things...things that all parents often take for granted such as the way children play with basic toys, they way they eat food, sit up, crawl, walk, talk etc. We have had to work at most simple skills and tasks through therapy and lots and lots of practice at home. Many skills do not come as naturally to children with Down Syndrome as they do with the typical child.
Having a child with Down Syndrome means we will never stop working or fighting for Kate to have the same opportunities and be given the same chances as others. We want her to have friends and to be understood by others, instead of being excluded or being teased  because of her disability. She can learn most things that other children learn, it may just take a little longer to get there. We are her voice, as are any parents who represent a child with a disability. In the 1950’s and 1960’s children with Down Syndrome were often institutionalized, usually not treated with dignity and worth, and  many never knew their families. Until 1983, most children with Down Syndrome did not attend public schools or receive formal education other than what they learned at home. In the 1980’s efforts were made to  include individuals with Down Syndrome in more areas of society as people were discovering that these individuals can learn and can make a positive contribution to society. Many strides have been made through these inclusions, but sadly, there are still people that look upon Down Syndrome individuals as they did long ago, not realizing that they are capable of learning and doing things just like everyone else. We feel that raising a daughter with Down Syndrome gives us the opportunity to make the public aware of what individuals with Down Syndrome are capable of doing. Kate can laugh, play, walk, talk, and is just as cognitively developed as other children her age. She will play sports, read, write, play with friends, ride a bike, swim, and play music just like other children. As Kate’s parents we want to be an advocate for the world to know what she and other individuals with Down Syndrome deserve the same opportunities and the same treatment and respect as others. 

What has been Kate’s progress over the last year?

Kate has made great progress over the past year! This past week Kate took her first steps! She is also climbing stairs, the sofa, chairs, and anything else that gets in her way. She knows a little over 15 signs (sign language) and can say around 13 words when she chooses too. She loves music and can do all the signs and hand movements for “The Itsy Bitsy Spider” “Twinkle Twinkle Little Star” and “5 Little Monkeys.” Kate is a huge fan of Sesame Street and loves Elmo. She can also point out her body parts, play peek a boo, play with her older sister, enjoys books, and playing with baby dolls. She does many of the typical things other two year old little girls enjoy doing. 
Children with Down Syndrome are born with low muscle tone, also called hypotonia. This means that the muscles are very relaxed and feel “floppy.” Even though Kate was born with better muscle development than most Down Syndrome children, her movement, strength and development are still affected. She sees a speech therapist, occupational therapist, and a physical therapist three times a week to help her with her development. Hypotonia also affects her speech and makes it more difficult for her to  talk. That is why we are currently teaching her sign language to help her communicate until she is able to  do so more verbally. Many individuals do not realize how hard children with special needs work in order to do many of the basic things in life. Every little thing Kate learns to do is a “big deal” and we always celebrate her accomplishments. 
We recently moved back to Texas from Colorado at the end of July. She loves being closer to her family, especially her grandparents. Since the move she has really blossomed socially and  is not shy at all!  Yes, she is a happy baby but I would like to clarify that she is a typical two year old with a full range of emotions. One of the biggest misconceptions about individuals with Down Syndrome is that they are always happy. That is completely false. They have the same range of emotions as everyone else.  Some are just happier than others. Kate is one of those. 

What are your future plans, goals, wishes?

Our goal for Kate is for her to be able to go, do, and achieve her goals and dreams. We want her to have the same opportunities as others.   Down Syndrome should not define her. We plan for her to graduate from high school and possibly go to college and later have a career if she chooses.  Individuals with Down Syndrome may experience some developmental delays, but they also have many talents and gifts and should be given the same opportunity and encouragement to do them. Most children with Down Syndrome attend neighborhood schools, some are in regular classes and others are in special education classes. It is not unusual for some individuals with Down Syndrome to get their driver’s license, graduate from high school, or go to college. Many adults with Down Syndrome live independently and work successfully with varying degrees of support such as retail, administration, child care, and hospitality to name a few.  Jim and I have met many families that have children with Down Syndrome who are now young adults that have achieved and excelled in many different areas of life, personally and professionally. Our wish for Kate is that the world will give her these opportunities without holding her back, treating her differently, or seeing her as an outsider. We want her to be treated just as any other child would be treated.

5. What or who inspires you to face the challenges?

Kate inspires us! She has this amazing little personality and a beautiful big smile. It is wonderful to see her face and how thrilled she is when she finally does a task or new skill. She is always so proud of herself.  We encourage, love and cherish her. Just like most parents, we want the best for our children. No matter how hard the road may be we want to give her the best that we can so that she may accomplish her goals and dreams. 
We could not face the challenges in raising a child with special needs with out our faith in God. Jim and I have always tried to put God at the center of our lives. Since Kate was born we have had more opportunities to witness and share our faith in God through her. People have asked us, “How can you not be mad at God for causing her to have Down Syndrome?” As I mentioned earlier, we knew that God knew that we would love and cherish any child He blessed us with. We always go to Psalm 139:14 , “I praise you for I am fearfully and wonderfully made! Wonderful are your works!” God does not make any accidents or mistakes. God made Kate perfect in His eyes ...and she is. He has a plan for her just as He does for everyone and we know that some day she will move mountains. Our song for Kate is “I Am A Promise,” from Bill Gaither. It states “I am a promise. I am a possibility, I am a promise. With a capital P, I can be anything, anything God wants me to be.” It isn’t what we want her to be or what society wants her to be. It is all about what God wants her to be and His plans for her.

If you could say anything to a world audience, what would it be?

We want the world to know that Kate is just like any other child! She just happens to have an extra 21st chromosome. Down Syndrome is not caused by something parents did or did not do. It occurs during fertilization at conception when cells do not divide correctly. Down Syndrome is something that just happens and can not be treated or prevented. 1 out of 788 children are diagnosed with Down Syndrome. Around 6,000 Down Syndrome babies are born in the United States a year. Kate was a big surprise to us because we did not know she had Down Syndrome until after her birth. In over 80% of Down Syndrome births, the parents do not know that their child has Down Syndrome until their baby is born. Doctor’s usually just talk about how the risks of having a Down Syndrome baby increase after the mother turns 35. Actually, 80% of Down Syndrome babies are born to women under the age of 35. Some women do decide to have prenatal testing, but the results are not always accurate. The sad thing is that 90% of babies with a prenatal diagnosis of Down Syndrome are aborted. Many doctors are support and to try to convince the parents to abort stating that their child would be a burden to society and that they would not have much of a life to live. This is heartbreaking, because we can’t imagine a world with out Kate and the joy she brings to us.Kate has a wonderful life. Our family has a wonderful life.

Many babies and individuals with Down Syndrome do have more health issues which can include heart defects, gastrointestinal issues, vision problems, and hearing problems to name a few. Kate was born with four holes in her heart and had to have oxygen the first four months of her life. We almost lost her when she was two weeks old.  Three of the holes healed within her first year and we are still monitoring the last as it is slowly shrinking. Kate has some feeding issues, but she should outgrow these soon.  Yes, she is a special needs child. However, she will be able to do what other children can do, it just may take her a little longer to get there.  That does not mean she is mentally incapable,  it just means that it may take her a little longer to learn new things. She has reached some of her milestones ahead of her older sister. People with Down Syndrome do experience some developmental delays, but they also have many talents and gifts and should be given the opportunity and encouragement to develop them. In 1960 the life expectancy of a child with Down Syndrome was 10 years of age. Today they live well beyond their 60’s and have rewarding lives. People with Down Syndrome have characteristics and traits which resemble more of their own family rather than other individuals with Down Syndrome. 

We will tell you, it IS a wonderful life! We wouldn’t trade Kate for anything. When she was born there were many things some doctors told us she would not be able to do, but there are so many things that she can do.  Down Syndrome is not what or who Kate is. It does not and will never define her. It is just a part of her, like her blue eyes. We want you to know Kate as Kate and not just as a child with Down Syndrome.  Kate is a daughter, a sister, a granddaughter, niece, cousin, and a great friend to many! She is just like you, only it takes her a little longer to get there. Those who are different change the world: those who are ordinary simply keep it the way it has been.

 

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