March 31, 2012

9 myths about raising a baby with Down syndrome

Mary Beth Tyson is a fantastic photographer that I met through my other job; she is funny, down-to-earth and happens to be a momma of a baby with Down Syndrome.  After getting to know her a bit, I was completely inspired by how openly she shares her experience as John David’s mom and about how committed she is to dispelling a lot of the myths that surround Down Syndrome.  Oh, and did I mention that she has two-under-two?  That’s right – she runs a successful photography business, cares for two small boys and she’s made it her personal goal to prove that her son can lead an amazing life.  Can you say “inspiring?”
I asked Mary Beth to share with me John David’s birth story, as well as talk about some common myths about children with Down Syndrome.  My hope is that it will raise awareness, inspire moms to question their own preconceptions about Down Syndrome and help us all to realize that every baby is an amazing gift.  Here is what Mary Beth has to say,

“Ryan and I were married in 2006.  After four years of traveling, staying up late, sleeping in and enjoying life we decided we were ready to have a baby.  We got pregnant as soon as we wanted and right away began planning for the newest addition.  At 18 weeks we found out we were having a boy!  Like most first time parents it’s hard to stop your mind from wondering what your baby will be like.  President of the United States, a doctor who finds the cure to cancer, an entrepreneur.  Your brain does crazy things when you are bringing your first into the world.  
 My contractions started around 6pm and a month too early.  Even though we were early we left our house excited and looking forward to returning in just two short days with our new addition.  I looked at the house as we left and I said to myself, in a few days three people will be living there, not two.  In a few days that room on the corner will be occupied.  Occupied with my perfect little boy with a future as bright as he wants and a world of opportunities.  His room was ready, his clothes were hanging in the closet.  The scene was set, it was just missing one thing:  him.   
After watching my baby’s heart rate they found that he was under distress and also very very small.  I was told that night they would need to do c-section rather than a natural birth and by 8am I was wheeled into surgery.  I was scared and worried that something was seriously wrong.  His size and weight scared me to death and I quickly started to realize my dream of perfection was beginning to fade and I was beginning to face something I hadn’t planned.  
At 8:30am he was born.  Even with all of the stress and worry his cry was the most beautiful thing I had ever heard.  They brought him over for me to see and after only a few moments they took him to the ICU and put me in a separate room where we waited to go see him.  When we were wheeled into the ICU to really see our precious John David for the first time.  As we looked at him we were met by a Doctor who delivered some news I never expected to hear.  He told us that they are very concerned he has Down Syndrome and then the rest of what he said I couldn’t hear.  All I could do is look at my precious little one who I loved more than anything in the world.  I don’t know if I cried or if I just stared.  I also don’t remember being wheeled out of the room.  Everything during that time is completely black.  I do remember being forced to leave and looking back over my shoulder I could see him alone on a table under a light and surrounded by no one as I was wheeled away, intoxicated by my drugs from surgery and told to take care of myself. 
Ryan and I spent the rest of the day and night in the small twin hospital bed crying together.  It’s not what you expect to hear when you have a baby.  I was scared to even go see him in the ICU.  I knew very little about Down Syndrome and what I did know I didn’t want to face and more than anything I didn’t want my baby to have to face it.  I was hit by a million thoughts and emotions all at one time and I was scared to death.
Late that night I was allowed to go see him and hold him.  As I held him in my arms I was still scared and heartbroken but he was so perfect to me.  He was beautiful and he was my baby.  He was the same baby that I loved and grew to love more with each kick from inside.  He was the baby I had dreamed about for 8 months and prepared for.  He was part Ryan and part me.  He was beautiful.  Even though I loved him I fought my thoughts and my fears.
Looking back I realize that one of the biggest problems and the reason for so many of my fears at the time is because I didn’t know anything about down syndrome!  I only knew about it from very limited experiences such as strangers in the grocery store or commercials about the Special Olympics.  My goal today is to educate as many people as possible about the facts of down syndrome to make the world a better place for my son.  Our dreams for John David are just as bright and big as our dreams for our second son, Brennan. (yes, we’re the insane people who got pregnant again right after John David was born – on purpose!)  While we know he will have to work harder to achieve certain things that may come second nature to our second son, we expect great things for him and probably more than what society expects.
I asked Mary Beth to share some common myths or misconceptions about Down Syndrome.  Here is what she shared with me,
1. Children with Down syndrome must be placed in separate special education programs.
2. People with Down Syndrome do not have typical relationships with people without Down Syndrome.
3. People with Down Syndrome don’t know they have Down Syndrome.  
4. People with Down Syndrome do not marry.
5. People with Down Syndrome will live at home forever.
6. People with Down syndrome are always happy and sweet.
7. People with Down syndrome die young.
8. People with Down syndrome are very similar to each other.
9. People with Down Syndrome do not learn beyond a certain level.

In talking about John David’s future, Mary Beth says,
“I can only share the truth about Down Syndrome according to my own experiences.  In the last two years my eyes have been opened to the truth about this wonderful group of people and I’m not only thankful for those who realized there is so much more to our kids but also their parents who said “enough!” and stood up to what we have traditionally believed about the affects of the 21st chromosome.  Before John David was born I didn’t know how to talk to a mom with a child with certain special needs.  In fact, people with special needs made me uncomfortable.  I wanted to treat them like everyone else but didn’t know how.  Moms with kids with special needs aren’t asking you not to see that there is a difference.  We are just asking you to give our kids a chance because we know there is so much more to them beyond what our world has traditionally believed to be true.  We don’t like stereotypes even if the stereotype may seen like a compliment.  We would rather our kids be recognized as an individual than categorized as “sweet” or “loving”. The best gift you can give a kid with special needs is to treat him like an individual with individual goals and dreams.  
 For example, one month I decided to teach John David to read.  Yes, at 21 months and with an extra chromosome, I was hoping he could learn to read.  And he did.  After two weeks he mastered 15 words without much effort.  I don’t think I learned the difference between “boat” and “boot” until the 1st grade.  He points to his body parts when he sees the word and when he sees the word “dog” he says “woof!”.  We are now moving on to the next 15 words. 
 Our goals for John David are great!  We have high expectations for him but we also know that the road he will travel may be harder than the road his brother will travel.  We don’t know what he will achieve in his lifetime but we do know that having him has made us look at life and humanity in such a different way.  We can’t wait to see how he will affect the people he comes in contact with because at 22 months he’s drastically changed us.  The future is bright!”

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