Thursday, March 28, 2013

Jesus Cried Out For His Father, Robert Ethan Saylor Cried Out For His Mother -- Please Help!

"My God, my God, why have You forsaken Me?"- Matthew 27:45-46 

Good Friday is the Friday before Easter Sunday when Christians commemorate the crucifixion of Jesus Christ and his death at Calvary. As a Catholic child it was hard to reconcile this violent story of Jesus Christ being betrayed by his followers and ultimately sacrificing his life for the sins of all mankind with a weekend celebration of pastel dresses and chocolate bunnies. 

As a parent, it is now even more difficult to think of your child calling out for you in his final moment of need. 

In the story of the Passion of Christ as told by Matthew 27:45-46, Jesus cried out for his father, "My God, my God, why have You forsaken Me?" and then he hung his head on the cross and died. 

Robert Ethan Saylor Cried Out For His Mother

Robert Ethan Saylor in this undated family photo.

And Now The Down Syndrome Community Cries Out For Justice

First and foremost, our family grieves and offers our most sincere condolences to the family of Robert Ethan Saylor. 

Imagine for a moment you have a child. A child who was born with an extra 21st chromosome. A child who might not always be able to communicate in the most clear and exact manner. Imagine that your child has grown up and is in a stressful situation. A situation that he may not be emotionally equipped to diffuse or manage. Imagine that because your child has Down syndrome, strangers are "afraid to get involved" in this stressful situation. Imagine that you sent your child to a movie with an aid--a helper--and then imagine that your child never comes home. 

Why, you ask? Why doesn't he come home? He had just watched a very intense and emotional movie, Zero Dark Thirty and wanted to watch it again. Have you seen the movie? It's incredibly intense. It took my husband and I at least two hours afterwards to finish talking about it. Imagine your child's aide goes to get the car and in the meantime, not one, not two, but three undercover officers somehow end up restraining your child on the floor on his stomach and handcuffing him.  Imagine that your child goes into respiratory distress while being held down on his stomach by three officers and then dies as a result of asphyxia. Yes-- dies. Read that word again, your child dies. On the floor of a movie theater. Over a $12.00 movie ticket.

Was your child armed? No. Did your child have a gun? No. Did your child have a knife? No. Your child wanted to watch a movie again and for the price of a movie ticket, he dies. At the hands of three officers. Your beautiful 26-year-old son dies. 

Imagine that your child's last words, as heard by witnesses, were calling out for you, "Mommy, help me." 

As one mother in the DS community writes-- your child dies as a result of death by Down syndrome. 

What does that mean, you ask? It means that because your child has Down syndrome he was subjected to an incredible and unbelievable violation of his human rights. 

Where is the outcry, you ask? Where are the riots and the protests? Perhaps if your child was the victim of a religious, racial, sexual or hate crime such an outcry might be heard. Might not be ignored. Might be taken more seriously. Might be considered more worthy of justice and action.

But instead, your child has a developmental disability. Your child has Down syndrome. As Robert Ethan Saylor's death shows us, your child's life is not as valuable or as precious as a "typical" person's life because your child has a genetic variation that he was born with that somehow makes him both scary and child-like all at once. How is that even possible? 

Why was such a non-violent, non-dangerous situation turned into a death sentence? Why didn't cooler heads prevail? Why didn't a single person stand up for Robert? Why didn't one person say, "This was a very intense movie. It was very violent. It was difficult to grasp. Why don't we wait until his mother is here?" Why? Why, God? Why was Robert Ethan Saylor forsaken?

Why did a grand jury rule that there was no crime committed when the Chief Medical Examiner's Office of Baltimore ruled Saylor's death homicide by asphyxia?

Robert Ethan Saylor's death is a case of police brutality. Excessive force and unnecessary cruelty. This is a civil rights matter. 

National Down Syndrome Congress Demands 

Independent Investigation Robert Ethan Saylor's Death

National Down Syndrome Congress

The National Down Syndrome Congress along with the International Down Syndrome Coalition is pushing for answers and for an independent investigation of Robert Ethan Saylor's death. In a statement released on March 27, 2013 the NDSC states:
The National Down Syndrome Congress (NDSC) believes that Robert Ethan Saylor’s civil rights were violated when he died after being restrained by three off-duty Frederick County, MD, Sheriff’s deputies.  Although the coroner ruled Saylor’s death a homicide, a grand jury declined to indict the deputies.
 “We cannot comprehend the series of poor decisions that were made leading to Ethan’s death,” noted David Tolleson, Executive Director of NDSC.  “If you used any other adjective to describe him – such as his race, religion, gender or sexual orientation – the streets would be filled with people seeking justice.  It appears that individuals at the theatre acted as if this was an emergency situation, or that Ethan presented an imminent threat, when in fact more time was both needed and available to assess the situation.”
 Tolleson adds, “By all reports, the officers involved are good men who did not intend for Ethan to die.  However, if an otherwise good person with good intentions were to kill someone with their car – perhaps because of neglected maintenance or driving under the influence – they would still be held accountable.”
 According to NDSC representatives, the Saylor case is filled with poor decisions and missed opportunities. 
  •  The officers should have been trained on how to interact with individuals with Down syndrome and other developmental disabilities.
  •  Recognizing that Ethan had Down syndrome, the officers should have showed more patience.
  •  The officers Tshould have worked with Ethan’s support person on strategies to diffuse the situation, rather than handcuffing him. 
  •  Ethan’s mother was on the way to the theatre, called by his support person.  Officers should have waited for her to arrive to help resolve the situation.
  • Other patrons nearby said they were afraid to get involved.  They shouldn’t have been.
 Tolleson noted that NDSC believes an independent investigation of what happened is necessary.  “Beyond the need for accountability, we need to know exactly what occurred so that we can work with law enforcement to ensure that it never happens again.”  
The NDSC believes that everyone, including people with developmental disabilities, have every right to attend events and activities in their community.  More awareness is needed about Down syndrome to ensure that all people feel welcome, included and safe.  “Ethan’s death is a tragedy and shines a spotlight on the need for awareness about people with Down syndrome in our communities, particularly among first responders.”


Justice for Robert Saylor
Undated photo of Robert Ethan Saylor
Please visit and sign the petition asking for an independent investigation of Robert Ethan Saylor's death. Click here.

For more action ideas, please visit Down Syndrome Uprising.

Please tweet.

Please share on Facebook.

Please help us to make those who killed Robert Ethan Saylor be held responsible and not be given a free pass because Robert has Down syndrome.

Please help us shout loud and clear that just because our children have Down syndrome does NOT make them any less valuable or less human than anyone else.

Please help and sign the petition:

Please do not forsake Robert Ethan Saylor like those who stood by and watched him die. You have the opportunity to make a difference.

Thursday, March 21, 2013

World Down Syndrome Day 2013 - Celebrating Inclusion, Acceptance and Education

Happy 2013 World Down Syndrome Day!!! Today is also the 2nd birthday of Cowgirl Up! My husband reminded me last night that I started this blog two years ago. It is also my goddaughter's birthday and my brother's birthday. March 21 is a big day!

This year I was asked to write a guest post for the Summit DD blog in honor of today. It is my first guest post and it was such an honor to be asked to write about Joey and Down syndrome. I hope you enjoy it and I hope you have a wonderful World Down Syndrome Day!

World Down Syndrome Day 2013 - Celebrating Inclusion, Acceptance and Education

My name is Jennifer Towell and I am an attorney, blogger, writer, advocate and the proud mom of two young boys, Thomas (4 1/2) and Joseph (2 1/2). Our youngest son, Joey, was born with an extra 21st chromosome, which is also called Down syndrome. When we were pregnant with Joey we were told he would never survive because of fetal hydrops, a septated cystic hygroma and a congenital heart defect. To our great joy and surprise, Joey not only survived, but has thrived!

All photos by Nat at Love What I Do Photography.
When he was barely two months old we first met with our Early Intervention team through Help Me Grow. My husband and I were both working and I never thought we would qualify for the services that Joey received through Early Intervention and Help Me Grow. Fortunately, we were wrong. It was not us who qualified for services- it was Joey. For the past 2 1/2 years he has received support and advocacy through his Early Intervention team. It seemed so strange at first to not pay anyone for these services, but as my mom told me, we do pay, through our taxes and through levy support. For that we are very grateful to our community. Through open heart surgery, eye surgeries and other procedures, our EI team has provided us with guidance, encouragement and support.

This past year, we have worked hand in hand with Jennifer at the Community Partnership for Inclusion, which has helped provide Joey with the opportunity to attend the same preschool as his brother Tommy. We never dreamed in a million years that Joey would be able to attend a "typical" preschool at age 2. You see, at this time, Joey does not walk, stand or talk. He communicates with sign language and a few words, but because of CPI he is able attend It's All About Kids Preschool. Joey will stand, he will walk and he will talk someday and getting to attend preschool is what will help him achieve these and many other goals.

Today is one of his school days. He attends on Tuesdays and Thursdays and today he and his school will be celebrating World Down Syndrome Day. Today we celebrate and advocate for the rights, inclusion and well-being of individuals with Down syndrome. The date of 3-21 is significant in that individuals with Down syndrome have 3 copies of the 21st chromosome. In other words, they have an extra chromosome. Most people have 46 chromosomes, but individuals with Down syndrome have 47.  I like to say, "Joey has 47 chromosomes, how many do you have?"

Not everyone understands what Down syndrome is. When our son, Joey was first diagnosed with Down syndrome we were told he has a "genetic abnormality." We prefer to call it a natural genetic variation. Here are just a few facts about Down syndrome:
  • Down syndrome is a genetic variation in which the individual has 47 chromosomes instead of 46.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
  • Individuals with Down syndrome have an extra copy of the 21st chromosome (the smallest chromosome) and thus, 3:21 is the day World Down Syndrome Day is celebrated.
  • Down syndrome occurs in people of all races and economic levels.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, leukemia, and thyroid conditions. Many of these conditions are now more treatable, so most people with Down syndrome lead healthy lives.
  • Some of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades—from 12 in 1912, to 25 in 1983 to 60 today.
  • People with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
  • Most importantly, people with Down syndrome are more like you and I than they are different.
What do I say to someone who is pregnant with a baby who has Down syndrome?
"Congratulations!" is the perfect thing to say to a family who is having a baby with Down syndrome. "Have you got the nursery ready?" is another option. What you should never say is, "I'm sorry." Please don't say that. We aren't sorry, we hope you don't feel sorry for us or for our child.

What do I say to someone who gives birth to a baby who has Down syndrome?
See above. "Congratulations!" is again the perfect response. Anything you would say to any other new parent is perfect. Things like, "What is the baby's name?" or "How much did she weigh?" or "How is he sleeping?" are all wonderful questions. Again, comments like "I'm sorry" or "How severe is the Down syndrome?" should be off-limits. Babies are a reason to celebrate! The last thing a new mom or dad wants to hear about their new bundle of joy is "I'm sorry."

What do I say to the parent on the playground who has a child with Down syndrome?
Please say anything you would say to start a conversation with any other parent. But, please, please don't stare. Please don't look our little one's helmets, glasses, orthotics or other equipment and just stare or break eye contact. Parents of children with Down syndrome are just like anyone else. We have great days. We have tough days. We love our kids. Some days our kids drive us crazy.

What do I say to a child with Down syndrome?
What would you say to any other 1, 2, 3, 4 or 5-year old? Say that. Ask the child his favorite color. Ask her what her favorite book is. Tell a funny story about yourself or your child. Basically-- just treat us and our kids like anyone else. That is all we ask. We ask for an opportunity to be a "typical" part of your church, your synagogue, your school, your neighborhood-- your life. The most important any of us can provide someone with a disability is one word-- opportunity. Opportunity to be a friend, a student, an employee. Opportunity to show you how we can shine and how we can live up to and beyond expectations.

Aren't people with Down syndrome happy all the time?
No! Absolutely not! This is a myth. Individuals with Down syndrome experience all emotions just like you and I do. They feel happy, sad, frustrated and angry like everyone else. Someone once told me that I was so lucky because Joey would never experience loneliness or despair. I told them he absolutely would experience those emotions. I think there is a common misunderstanding that individuals with developmental disabilities aren't intelligent enough or aware enough to feel sad. This is not true at all. Individuals with Down syndrome and other developmental disabilities may take a little longer to respond because of speech difficulties, but they have feelings like all of us and there are times when they experience joy and there are times when they experience sadness.

What do I talk to a teenager or an adult with Down syndrome about?
This is an area that I am not as familiar with, but I strongly believe in the same approach as above. While individuals with Down syndrome may have hearing or speaking difficulties, they DO understand your words and your actions. They may take longer to respond to a question, but they understand the spirit of your approach.
Below is a wonderful video called "Just Like You"  made with the Down Syndrome Guild of Greater Kansas City featuring three teenagers and their friends openly discussing the special needs of peers with Down syndrome.  I sincerely hope you will watch this video as the impact of what these individuals have to say about themselves tells far more than I could ever hope to express because unlike my view from the outside as a mom, these three teens have Down syndrome.

What is it like to have a child with Down syndrome?
Having Joey as a son has provided our family with more love and more joy than we could have ever imagined. He is so much like his older brother that on a daily basis my husband and I say to each other, "Do you remember when Tommy used to do that?" Joey's very existence has made our family more aware of the world around us and much more aware of the differences in every individual. Joey has made us more compassionate, more patient and more accepting. My heart feels like it will burst with pride on a daily basis as Joey makes progress and learns new skills. His life has been the best gift our family has ever received.

Happy World Down Syndrome Day!
As we celebrate this 21st day of the 3rd month, I ask you to consider how you might make a difference in our community for an individual with a developmental disability. Not just Down syndrome, but all disabilities. Do you have a place for a person like Joey in your school? In your classroom? In your workplace? In your church? In your world? In your heart?

We hope so.

Wednesday, March 20, 2013

Just Like You - Getting Ready for World Down Syndrome Day

Tomorrow is World Down Syndrome Day 2013!!!

I have published this video once before, but I want to share it again because it is just so incredible! It was made with the Down Syndrome Guild of Greater Kansas City and features three teens with Down syndrome and their friends openly discussing both facts and myths about Down syndrome.

What I like most about it is hearing the kids with Down syndrome explain in their own words how the r-word affects them, what their friends mean to them and their individual experiences in school.

"Just Like You"

To get ready for the big day we packaged smiley faced cookies, letters about Down syndrome and 21 M&M's in honor of Trisomy 21 to share with all of Joey and Tommy's classmates at school and for our therapists, teachers and friends. We are usually a Scarlett and Grey (Ohio State) or Big Red (University of Nebraska) family, but on World Down Syndrome Day we turn to the official colors of yellow and blue to celebrate Down syndrome awareness.

It's nothing big, but just a little way to help spread awareness and to also thank the people who support Joey all year long. We hope you have a wonderful week as well!!!

Thursday, March 14, 2013

Brown Syndrome - Rhymes With Down Syndrome

Oh, Joey. Why can't I do any of this for you? Why can't I put myself in your shoes and be the one who has to go through all of your appointments and procedures and surgeries? Why? I don't ever feel sorry for myself, but I can't lie, there are many days when I do feel sad and I do feel so very sorry you have to do all of this. 

But you are tough. You are resilient. You keep trying to pull up and stand on your own, but you aren't quite able to do it, yet, but you never stop trying. You keep forging ahead. And so that is what we will do. We will follow your lead. Your example. Your incredible spirit.

This was Tommy's favorite spot and now I'm using it to get you to stand so we can cook together. You seem to like it and you seem to be able to stand for about 20 minutes on your own in here. Great job, Super Joe!
Today we spent about four and a half hours taking you and Tommy up to the Cleveland Clinic, seeing your eye surgeon, scheduling your next surgery and then finally making it home. We were supposed to go down to Akron Children's Hospital to get your blood drawn for your six month check of your thyroid, white blood count and red blood count, but I just couldn't get us down there. Four-thirty pm seemed just too late to make it to a second hospital in one day and we were all so very tired out from the long afternoon. We will try to make it in Monday morning before your physical therapy. You won't cry when they draw your blood. You never do. You amaze me. You are so, so tough and we are so, so proud of you.

Your sweet teacher sent this to me today. You adore her and you love school so, so much!
Here is the good news, Super Joe. No more eye patching. Yes! Apparently it doesn't even work with our newest diagnosis. 

Here is the bad news, Super Joe. Apparently you have "Brown syndrome" and I cannot help but find it a little bit humorous. I mean seriously. Brown syndrome? Rhymes with Down syndrome. Apparently it is also called "Superior Oblique Tendon Sheath syndrome." I guess we will stick with Brown syndrome (named after Dr. Harold W. Brown) for now. What is wild is that we kept thinking that there was something wrong with your left eye, but it seems that perhaps it is your right eye that is causing the problems. 

Here is an example of what it looks like: 

Brown syndrome is "a mechanical problem in which the superior oblique muscle/tendon (on the outside of the eyeball) does not move freely. This makes looking up and in with the affected eye difficult. Often the higher eye is mistakenly presumed to be the abnormal eye but the lower eye is affected. Brown syndrome causes the lower eye to have trouble looking upward in side gaze. Essentially the affected eye is “tethered” or held down by the tight superior oblique tendon." 

In your case, Joey, the doctor is concerned with your binocular vision. Your left eye extremely overcompensates and he believes your right eye is being tethered down as described above. We worry because that beautiful little left eye seems to go flying off into your brain and you seem to have a hard time looking up or to the left. 

Lucky for our family, your vision specialist from the Cleveland Sight Center joined us and not only helped us get through the appointment, but she really made sure we knew what questions we wanted answered and she was this calming fairy Godmother presence throughout the appointment. Thank you, Brenda-- we know how valuable your time is.

The fun part of today was watching you and your brother make the most of our long journey. As usual, you both offered much comic relief. 

Okay, Super Joe. Just a little bit more bad news. Today we scheduled your third eye surgery. It's tentatively scheduled for Friday, May 10 so we can fit in some extra appointments to see the other doctor and to see if there is any improvement at all. Eye surgery isn't anywhere near the ballpark of your open heart surgery, but along with it comes at least four extra appointments including a pre-op, a visit to the pediatrician to clear you, a cardio clearance, the actual surgery and the post-op surgery. Each of these appointments tend to eat up at least half a day at a time. But it's okay. It's more time we get together. Just another part of our adventure!

I'm not afraid of another eye surgery, but I am concerned. Each eye surgery you have had seems to have brought about a new set of problems. Your doctor told us the most surgeries he has ever had to perform on one patient was four. We are hopeful you aren't out to beat his record. 

This August you will be three and by then you will have averaged two surgeries a year for your life. That's a lot of anesthesia for any one little person. One open heart surgery, one ear surgery, one auditory brain stem and 3 eye surgeries. 

Another adorable photo from his teacher at It's All About Kids preschool. 
Super Joe, you are going to take this next step in stride. You will rock the surgery and the recovery and every aspect of it. We are going to get your eyes in a good place because before long you will be running after your brother and we need to make sure you have every advantage possible. 

We love you, Super Joe. In our eyes, we don't even see Down syndrome. We just see an amazing little boy who is full of love. We won't see the Brown syndrome either. We will put it in a bucket we try to manage--but not focus on--that has included the following mysterious sounding diagnoses of nystagmus, ascites, torticollis, plagiocephaly, apraxia, atrial septal defect, mitral valve leak, cystic hygroma, strabismus, optical torticollis and other things we can barely pronounce. Just a bump in the road, my love. A bump in the road.

World Down Syndrome Day: One Week Away!!! March 21, 2013

Only 1 week until March 21, 2013-- World Down Syndrome Day!!! Will you be celebrating? Will you be wearing your Joey's All Stars shirt? Will you consider making a donation to The Up Side of Downs and Stand Up For Downs to help individuals in Northeast Ohio with Down syndrome? 

There is a beautiful blog posting over at the Summit DD site that tells the story of Joey's search for a preschool

Next Thursday I will be doing a guest post on their site and cannot wait! 

Any advice you would like me to share with the world about raising a child who has Down syndrome? Just shoot me an email or leave a comment.

Wednesday, March 6, 2013

Just Because I Have Down Syndrome Doesn't Mean I Can't Hear or Understand You

Today is March 6, 2013 the Spread the Word to End the R-Word day! What is the R-Word, you ask? You've probably heard it before, it is the word "retard" which also takes on other various forms such as "tard" or "retarded". It is often used without thought in everyday lexicon by individuals seeking to seem self-deprecating as in, "Oh, I am so retarded." I am a child of the 80's/90's. I used to use the word without a second thought. It was a slang word. A term I never really thought about. A word I never realized might have consequences.  A word I did not have the good sense to understand might hurt someone else's feelings or make them feel small or even invisible.

Oh. And then I grew up. I had a son with Down syndrome. I learned more about disabilities and fighting to be heard than I had ever imagined. I learned that this one word has an incredible amount of power, connotations, associations and variations (ever heard of a "fucktard"-- one of the most disgusting words I have ever heard) that are all negative. There is no longer a single positive connotation with the word "retard" in our society. We have twisted it, given it a life and released it in all of its hate and ignorance.

What those who want so desperately to hang on to using this word (hello movies like "Killing Them Softly", tv shows like "Veep" and political commentators like Ann Coulter) do not understand is that while it may seem like just a word, it is actually a mind set. It is a culture of intolerance and dismissal that removes value from people's lives. People like Joey.  

Why the R-Word Hurts Super Joe

Joey’s is not considered “verbal” just yet.  He isn’t exactly “non-verbal”, but he is definitely behind “typical” progress when it comes to language and speaking skills. Now this is certainly not to say that because he is non-verbal that he doesn’t communicate.  In fact, unlike many of us, Joey is learning two languages. He is learning and using American Sign Language as well as English. 

What I want people to know on this national day of trying to spread awareness and trying to put an end to that horrible R-word, is that while Joey and others with disabilities might not speak as fast as you or might not speak at all, they hear. And even if they have hearing loss like Joey does or even if they are deaf, they hear. They communicate. They understand. We talk about this often in his speech therapy. Joey may not speak yet, but he does communicate and communication is so much more than just words coming out of our mouths.

We communicate with our eyes. We communicate with our gestures. We communicate with our bodies in the way we might turn away from someone who we view as not as valuable.  Ending the R-word is just one step toward helping individuals with disabilities find a voice and be heard in ways other than just language. It will require a definitive shift-- a shift in our attitudes and how we perceive people. A shift in how we assign value to individuals.

I was at a breakfast today for an incredible organization called Child Guidance and Family Solutions here in Akron.  One of the speakers was a young man in high school who moved to America from Mexico. He does not have Down syndrome or any other developmental disability, but when he moved to Akron he was bullied at school. What he said today spoke so loudly to me for this very cause. He said that while he didn't necessarily understand what the bullies were saying (because they said it in English and at the time he was still learning to speak English), he knew what they meant. He did not know the exact words, but their eyes, their bodies and their attitudes directly expressed what they wanted to get across.

I honestly think people use the R-word for 3 reasons.

1. It is a bad habit.  They have no ill-will, but do not give it a second thought.

2. They don’t think it hurts anyone.

3. They don’t think the people who have been classified as “retarded” due to developmental, physical or mental delays understand what the word means.

For our family, the word hurts for different reasons. The biggest reason it hurts is that I have two sons who I want to protect from the word for different reasons. For Tommy, I don’t want him to feel the pain I do when I hear the word used and I don’t want him to ever think that his brother is “retarded”. For Joey, who has faced enough in his short life for any of us, I don’t ever want him to feel like less of a person or less of a human because of this derogatory word. The fact is that someday very soon Joey will completely understand what the word “retarded” means and he will know when someone is using it that they are slamming individuals with disabilities. 

As a mom I have had many, many situations in which the R-word comes up. Often I try to casually say, “Ohhhh—we don’t like that word very much!”  Some days I don’t have the fortitude or courage or strength to say anything at all. Some days if a friend or an acquaintance says it I just say a little prayer in my heart because my stomach hurts so bad and is stuck somewhere in my throat and I just can’t squeeze the words out because I don’t want them to feel bad or awkward. It’s tough. It’s hard. I’m not going to lie. I’m not going to sugarcoat it. I strive to be an advocate and an educator, but there are times where I simply don’t have the fortitude and I’m embarrassed to say this, but it’s true.

Back two or three Occupational Therapists ago (we seem to go through them like water—it’s like that old U2 song, “But I Still Haven’t Found What I’m Looking For”), we had a situation in which our OT said during a therapy session that her bathtub was just “so retarded”.  I waited until the other therapist left the room (it was a double therapy day) and I said to her, “I just wanted to say something or else I would spend the rest of the day really upset.  A couple of minutes ago you used the word ‘retarded’ and I really don’t like that word and I especially don’t like it used around Joey.” 

Her response was, “No, I didn’t.” That’s when things got really awkward. I said, “Yes, you did. I know you didn’t mean it towards him, but I want therapy to be a safe environment where those kinds of words aren’t used in front of Joey.” Her response was still denial and then it became a little condescending in that she started saying that Joey was a really smart little boy and that he keep getting smarter. I tried to move past the encounter and we had about 2 more incredibly awkward therapy sessions and then we decided to find a new OT. 

We spent about 6 months with another OT and then in January started seeing another OT (our 6th? 7th? I honestly can’t keep track anymore).  The new OT had made some comments, you know, the usual “Downs kids” kind of generalizations that had set off some red flags. I was trying to be open-minded and willing to see past some vernacular differences until our last session. I don’t know if she was tired or having a bad day, but the session went horribly. She was not directing Joey in any manner. She was acting very dismissive and negative. Then she said to me, Joey’s mom, in front of Joey who will be 3 in August, “You know it’s cute when these Downs kids are stubborn when there are 2 or 3 years old, but it’s not so cute when these Downs kids are this stubborn at 8 or 9 years old.”
Um, okay. 

I can’t and don’t expect every person Joey works with or sees in the medical field to use inclusive and person first language every single time we see them.  In a perfect world they would, but I honestly have learned to accept that not everyone will every single time.  However, what I insist on and will continue to demand is that Joey’s service providers, doctors, nurses and therapists (most of which do an AMAZING job!!!) speak in front of him as if he can understand every single word that comes out of their mouths. Because here’s the deal, did Joey understand exactly what his former OT said about him? No. Did he sense her attitude towards him, her body language and her spirit—you bet he did. At this point, as his speech therapist has told us, he understands much more of what we say than we think he can. 

As John Franklin Stephens, a Special Olympics athlete and Global Messenger who has Down syndrome wrote for

People still ask me about what is so wrong with using the R-word. I can only say what it means to people like me when we hear it. It means that the rest of you are excluding us from the group we want to be part of. That’s the hardest thing--the loneliness. We process information slower than you do, so even keeping up in a normal conversation is a constant battle for us. We are aware when you stop and just look at us while we are trying to catch up. We are aware when you just say “uh-huh,” and then move on, talking to each other. You mean no harm, but you have no idea how alone we can feel, even when we are with you.

Our son can’t yet stick up for himself or tell others that he doesn't like being marginalized, but here is one of the best videos I have seen that shares three teenagers with Down syndrome and how the R-word makes them feel.

Do I believe in freedom of speech? Absolutely.  I also believe in human decency and that how we treat others who have disabilities or who are different from us tells far more about us than anything else we do in our lives.

I hope you will consider what your words and actions mean to individuals like Joey.

I hope you will consider not using the R-word and I hope you won’t use it in front of my boys or your children.

Some excellent posts on the power of the R-word:

Monday, March 4, 2013

If You Could Take Down Syndrome Away From Your Child's Life, Would You?

A couple of weeks ago I wrote about watching a couple on The Today Show say, "We're safe, the baby does not have Down syndrome" when they received their prenatal results. This particular segment and blog posting sparked much more conversation than I ever imagined it would. 

One of the topics that arose as a result of that post was the following question, "If you could take Down syndrome away from your child's life, would you?"  Does your child have Down syndrome? A different disability? Would you take it away if you could?

All photos by Nat.

It is a complicated and loaded question that is not easily answered. Mostly because Down syndrome is a different type of diagnosis. It is not a disease. Our children do not suffer from Down syndrome (as is often reported in news articles). Instead it is a condition. A natural, genetic variation that occurs in all races, all socioeconomic categories and in both females and  males. 

If you were to ask if you could take away your child's cancer, I imagine close to 100% of parents would say yes without hesitation. But Down syndrome is not cancer. Leukemia occurs anywhere from 10 to 20 times more often in children with Down syndrome, but Down syndrome, in and of itself, is not cancer. 

I struggle with this question for multiple reasons. As someone who is more pragmatic than philosophical, I have a hard time even going there or even thinking about a world in which I could take Down syndrome away from Joey's life. While I can't imagine this, there are such options in our world. The one option that has been reported to occur to 50-90% of babies who are diagnosed prenatally with Down syndrome is abortion. In more simple terms, a prenatal diagnosis of Down syndrome is a death sentence to at least 50% of those babies who, like Joey, happen to have an extra chromosome.

My response to whether or not I would take Down syndrome away from Joey's life is....never. I would never do it. I couldn't. Down syndrome is part of who Joey is. Having Down syndrome is how God made Joey. Selfishly-- very selfishly-- Joey having Down syndrome has enriched my life in ways I could have not ever imagined. Joey's life- exactly as it is- has given me a purpose in life. His extra chromosome has helped me become a better, more educated, more aware, more compassionate, more understanding person. I am not a perfect person by any means and am constantly struggling to improve and better myself, but Joey's life has made me feel like my life has more meaning and more purpose than it has ever had before.

I would like to take Joey's heart and eye issues away if given the opportunity. But again- if I did that, would he still be the amazing little boy we know and love? Maybe not. I would like for him to struggle less to learn to talk and walk, but again, that might change his incredible little personality, so ultimately, my answer is, "No." I would not take Down syndrome away from Joey's life. 

If I could protect him from heartache, ridicule, pain and struggle I think I would. I think I would do the same for Tommy if given the chance, but then again, those are the very things that make our lives more meaningful and help build our character and our ability to persevere.

I now understand and know that ultimately, I have an incredible fear of playing God. It is the very reason that when we were offered to terminate Joey's life during our pregnancy right up until week 24 (the legal limit for an abortion in Ohio) I just could not do it. I feared my ability to raise a child with unknown challenges, but I personally fear taking or changing a life in a way that I wasn't meant to far more than anything. Both of our children are 100 times more incredible than I could have ever imagined a child being. 

Other parents and grandparents feelings.

I asked other people to write an tell whether they would take away their child's Down syndrome if they could and here is what they said. Thank you to everyone who shared their very personal thoughts about this topic.

B wrote of her son, "I would not. Down syndrome is who he is and it is a part of him as much as it is a part of our family. I wouldn't take away my daughter's beautiful brown eyes, or my other daughter's determination; all things they were born with. I happen to think we won the lottery with him having an extra chromosome. I can tell you that he brightens every room he steps in, every wave he gives a stranger and the hugs he shares with people that need it the most (the same people you or I would just walk right past without a second thought."

T wrote, What would be the point? "It is the way it is. She does have Down syndrome. Always will. Why not just celebrate it and celebrate her."

L  wrote about his son, "I don't know if we'd take away his Down syndrome or not. That's a thought provoking question. On one hand, nobody wants their child to have the (understatement) hard life that the syndrome brings, even in its varying degrees. On the other hand, the people I have met in my life with severely limiting medical conditions are some of the most inspiring people I've ever met, and add something to the world that so-called "able-bodies" people don't (or won't).

M writes of her son that she loves him "exactly the way he is" and that he is "everything I could have wished for." She also writes, "At the same time, I can recognize the feelings of worry that every parent has. These worries are different for kids with special needs. I did not say more, just different."  As with many of the other responses, M says she is torn between her love for her son who is perfect to her exactly as he is and her wish to protect him from a sometimes "un-accepting and cruel world" to make his life a bit easier and less challenging, but without that extra chromosome- her son just wouldn't be the same person he is.

One grandparent wrote that their grandchild with Down syndrome has made their entire family more compassionate and better. For this particular grandparent, they would take away Down syndrome for their grandchild's sake, but not their own. The greater health issues and struggles with learning skills and tasks are some areas they wish their grandchild did not have to struggle with. This grandparent and the family love their grandchild unconditionally, but they do wish that the grandchild did not have so many struggles along the way. 

The grandparent seemed to summarize what many of the parents felt. That they would not want to change their child, but would like to take away the health issues. 

For me, the health issues have been a very real part of Down syndrome since long before Joey was born. With all of his health issues in utero and then his health issues since birth, there have been many a night when I have pleaded with God to let me go through the struggle, surgery or procedure instead of Joey having to do it again. 

Then there are my very real fears of what his life may be like as a teenager and then an adult. I fear isolation and loneliness in Joey's life and I pray that God allows him to have a full and meaningful life in which he achieves his dreams and has meaningful friendships and romantic relationships as well. 

The following excerpt from an editorial in The New York Times yesterday by Lawrence Downes illustrates one of my worries for Joey. In the editorial, Downes quotes John Franklin Stephens, a man from Virginia who has Down syndrome and serves as a global messenger for the Special Olympics:

“The hardest thing about having an intellectual disability is the loneliness,” he once wrote in The Denver Post. “We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, ‘unh huh,’ and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.”
“So, what’s wrong with ‘retard’?,” he asked. “I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the ‘in’ group. We are someone that is not your kind.”

I would not take Down syndrome away from Joey's life. I hope that by writing and advocating I can help educate the world and help make it a world where individuals with Down syndrome and other disabilities are not excluded from the group because they are different. I don't want to change Joey. I want to change the world.

Another topic I am contemplating and worrying over. Anyone have any ideas? Any answers? Any input? 

Do your other children know that your child has Down syndrome? How did you tell them? When did you tell them?

World Down Syndrome Day is 3/21/13!!!