Unified

My youngest child has Down syndrome and plays on his middle school Special Olympics Unified basketball team. The games are guaranteed to bring a smile to your face by watching the enjoyment of the team–from the players and peer support to the coaches and refs.

Recently, one of the basketball games served as an assembly for the entire middle school. When my son’s team arrived in the gym, there were signs supporting them as well as the home team. The student body didn’t just cheer on the home team; they held signs and cheered on our team as well. The gym emanated joy, support, and unity beyond the bounds of competition. I wondered if all those students realized that in that hour, they were also fostering a sense of belonging and acceptance for everyone. It’s moments like these that remind us of the power of kindness and the beauty of coming together as a community to celebrate each other’s differences and achievements.

Not Another Blog Post on Being a Parent to a Child with Special Needs…

Being the parent of a child with special needs, I read a lot of blog posts on what it is like. Everyone has their own opinion, their own feelings, and their own unique situations. I can’t speak for anyone else. But I see lots of comments on how people need to stop being so sensitive, or they are tired of hearing how they should parent. (I do find it ironic when people complain about someone being too sensitive when clearly they are sensitive in being told how to act. But that’s beside the point.) And yet others are wanting to learn more.

So here it goes, another post on what it’s like to be the parent of a child with special needs. And this is just one perspective. My child doesn’t have health issues, or major mobility issues. Mainly, he’s cognitively impaired and has some gross motor and fine motor delays. I’m not going to tell you how to parent. I’m going to provide you answers to potential questions you may have. Also, please feel free to ask me about my life. A favorite quote of mine is “Questions don’t hurt; ignorance does.” (Yes, it is from the Facts of Life.)

Guess what? I don’t think of myself as much different than my friends with children who don’t have special needs. I really don’t. Yes, I have a few more activities in my schedule that make it hectic. But I know other people who have their neurotypical child enrolled in a host of activities and they run around like chickens with their heads cut off. Until my son was in preschool, I was taking him to physical therapy and Early Intervention twice a week. I didn’t complain. I did it. Sure there were crazy days. Days when it seems like it would’ve been better to stay in bed. Everybody has those. Every parent has those.

Am I offended when you ask me questions like, “did you know your child had Down syndrome before he was born?” or “how high functioning is he?” The answer: Of course not. You’re showing interest in our life, our situation. You’re wanting to learn more. It’s an opportunity for me to advocate and educate, not get offended. So don’t worry whether you’ve phrased the question correctly or used the right words. I’m thankful you’re wanting to learn more. I’m grateful for your open mind.

Do I dislike the use of the word retard when used as slander? Yes. It’s saying that those with a cognitive impairment are less human than those without. I also dislike the word gay being used in that manner. And I don’t like the words nigger, Wop, Spick, towel head, camel jockey, kike, etc. I don’t let my kids call people names. And if you use them around me, I’ll politely correct you.

Do I think you should praise your kid for playing with a child with a disability? I don’t care. You’re teaching your child tolerance and to not discriminate. You’re doing a good job. Keep it up. If you told your child to walk away and ignore the child based on cognitive level or physical disability, well, that’s your prerogative too. Not one I would agree with, and quite frankly, you’re teaching intolerance and you might want to reflect on that. But I can’t make you do it. I can simply ask you to put yourself in that person’s shoes.

Is it OK to ask me how he’s doing and what his teacher says about his development? Yes. Please do. Again, it shows you care. It’s an opportunity for me to share what I’ve learned.

Is it OK for you to tell me the accomplishments of your child, even if our children are the same age and yours is doing much more? Yes! I’m happy for you. I’m not comparing my child to yours. Yes, I may wish my child could do those things, but I have to stop and reflect on what all my child has done and is doing, and I get my perspective back. If we are friends, please share your highs and lows with me. Just like you would any parent. My feelings are exactly that. Mine. I decide how to feel. And I want to share in your happiness.

In other words, I’m a parent. Like you. We all have different challenges. Some challenges are bigger than others. I can’t speak for other people. Just me. But if you know me and have wondered these questions, please know that I’m happy you are on this journey with me. It’s not a journey I expected to take. But I can honestly say I feel blessed to be on it.

Let me share my blessing with you.

Angels Among Us

I was at the hospital today where both my children were born. The hospital has a wonderful cafeteria with an array of fresh cuisine. People actually go there just to dine. That can’t be said about a lot of hospitals.

Anyway, as I waited in line to pay for my pindi chana I thought I would see if I could leave some money to buy a young man lunch. Three years ago this young man, Tyler,  came by at just the right time after my youngest child was born. My youngest child has Down syndrome, as does Tyler. The day after I had given birth as I walked my baby around the maternity ward I ran into Tyler sweeping the floor. He stopped me and said, “Congratulations! He’s beautiful. Like me.” Tyler gave me so much perspective that day. Perspective that would take me a few months to realize.

So three years later, I decided to buy him lunch as a thank you for being kind. I asked the cashier if she knew the young man I was speaking of and she did. She told me that the hospital gives him a certain amount of money for his food and that he usually brings his own and just buys a cookie and milk. So there went that idea. But she asked if I wanted to wait around and thank him myself as he would be in the cafeteria soon.

So I waited. I looked around the hospital and recalled the sadness that overwhelmed three years ago. I saw the nurse who pushed my wheelchair to the door, gave me a hug, and told me everything would be OK and that she would keep us in her prayers. As I reminisced I realized how those tears weren’t really necessary. But that’s what worry and fear do–steal one’s happiness. I’m so grateful for her prayers, and everyone’s, as I had much to be thankful for: a healthy baby boy.

Then I pulled out my phone and looked at the video my husband had sent me the previous night while I was roller skating with our oldest. Our youngest was taking a tubby and saying, “Hi Momma.” He flashed his infectious smile and giggle. I smiled from the depths of my heart.

Tyler came over to meet me. I thanked him for his kind words three years ago, and how I never forgot them. I told him how I will always remember how he said my son was beautiful, just like him. I showed him a picture of my son. He then told me I was beautiful, just like my son. He asked his age and what he was wearing on his head. A hat with a fox face on it. It’s unbelievably adorable!

I thanked him again and told him to have a good day. We gave each other a hug and said farewell. Then Tyler turned around and said, “take good care of that little boy.”

I will, Tyler.

I promise.

Opening My Eyes

March 6 is Spread the Word to End the Word Day (www.r-word.org).

A little over a year ago I didn’t know about the significance of March 6. I made poor word choices without thinking about why I chose a certain word or how my words affected others. I would say, way more often than I would like to admit, “That’s so retarded.”  I even used the short bus line a few times.

I never meant any harm. It was just a word or phrase that many people used. After all, in high school I befriended a boy with Down syndrome, Mark, who rode the bus with the rest of us who had to take a bus to school. I was very shy in high school, but to this day I recall the time Shawn (a bully) started to mock Mark. He was making fun of Mark’s math class. I was sitting next to Mark and tried to ignore Shawn. But I couldn’t take it. I asked Shawn what math class he was in (knowing he was in a math class several levels below his current grade level). (OK, so I didn’t take the high road with that one.) I remember telling Shawn he would never be a quarter of the person Mark is. I continued to sit with Mark on the bus for the remainder of the year, truly enjoying his company. (And Shawn stopped picking on Mark.)

Yet, all those times I said “That’s so retarded” I never put the connection together that what I was saying would’ve hurt Mark had he ever heard me. I never would’ve wanted to hurt him. I never thought about how it would’ve hurt Mark’s parents to hear me make a short bus remark, especially since they must have been so proud that he was riding the bus with his “typically developing” peers. I never realized I was perpetuating a negative stereotype that people with intellectual disabilities are less than those without a disability.

I never thought.

But all that changed August 28, 2011. That’s when I was given a deeper gift of compassion and grace wrapped in 19 inches, 6 pounds 4.9 ounces. And my compassion and need to advocate grows with each amazing smile he gives.

I’m sorry it took me so long to have my eyes opened, but I’m glad almond-shaped blue eyes opened them for me.

Christmas List

Recently I watched a video on YouTube by two boys, ages 6 and 7, who wanted to make a video to speak up for their sisters. You see, the family’s house was spray painted with hateful and ignorant comments because two of their young children have Down syndrome.  (You can watch the video here.)

Being the mother of a child with Down syndrome, I felt a huge range of emotions watching this.

First, I was angry. If I ever caught some jerk doing this, all 5’3” of me would come down on that person like a mother grizzly defending her cubs. I seriously had the urge to kick someone’s ass. (And I promise to start throwing punches should I ever see someone being this malicious!)

Second, I felt hurt. Hurt because nobody deserves to be the victim of a hate crime. Hurt because I can’t bear the thought of someone mocking my child. My sweet one-year old has the best smile. He lights up a room by just being his sweet self. It’s a hurt I can barely describe. It feels as though someone has grabbed your heart and stomach and started twisting them and won’t let go.

Third, I felt hope. After I had a moment to calm down, I realized that I had watched two young boys show more compassion than some adults. Their video has gone viral and it’s being shared all over social media.

I watched this video by the glow of the Christmas tree. And I knew what to put on my Christmas list. My wish is that every person who reads this blog post will share my list with at least one person.

My Christmas Wish List:
•    I wish that people would stop using the word “retard” as in insult. Don’t call someone “retarded” because they are slow to catch on to a joke. My son isn’t the butt of your joke. He has feelings.
•    Please don’t use the phrase “short bus” “window licker,” or the one I really can’t stand, “F$#%tard.” I’m sure my son will ride the short bus to school, but he’s no less of a person than your child who rides the full-length bus.
•    Please don’t be afraid of someone with a disability. Don’t back away from them and act like they have some contagious disease. People with disabilities are people.
•    Show compassion to others, and teach it to your children.

My hope is always that as my son grows older, acceptance will become the norm.

Happy First Birthday

One year ago my planned course in life took a detour.  I wasn’t expecting this change in course, but life has a way of reminding us that we don’t know what the future holds.

Today is my youngest child’s first birthday. He was a little peanut when he was born—6 lbs, 4 oz. Now he’s a whopping 21 lbs. And he’s been pretty healthy, other than a bout of RSV and pneumonia. Neither illness lasted long or resulted in hospitalization.

He wakes up in the morning by cooing and chatting in his crib, brining an instant smile to my face. When he sees me, his brother, or his dad he gives us his ear-to-ear smile. It’s a smile that radiates happiness to everyone around him.

He loves to look into my eyes and study my face. Sometimes it seems like he is looking into my soul.

He loves to chew on Sophie the Giraffe. (An excellent toy, even if it is over-priced and ridiculously trendy.) And he loves to play with his elephant busy ball popper and superstar sing-along stage.

He loves to eat spinach-mango-pear puree and yogurt. Like his brother, he seems to enjoy Sunday morning pancakes.

He loves to swing and go for bouncy rides.

He’s learning and absorbing so much his first year of life. But I’ve learned more.

I’ve learned that the timing of developmental milestones matters more to me than to him. He isn’t crawling yet. His hypotonia makes it more difficult. He works hard on building his core strength and gives it his all in physical therapy. He keeps trying. He doesn’t give up. I don’t think he looks around and thinks “I can’t crawl yet, but that other one-year old can walk.” I do, however. But if he’s happy and doing his best, then why should it matter to me. I know he will do those things too. In his time.  So I’ve learned to enjoy each moment. I don’t spend time so much time concentrating on the big picture that I lose sight of the little details that make it complete.

I’ve learned Down syndrome isn’t something to be scared of. The past twenty years have been full of research in ways to help children with DS. Early Intervention starts in infancy. Sure, there are lots of appointments for physical therapy, speech therapy, and occupational therapy, but it advances a child’s development. Every day I read about people with DS who do more than thought possible: owning a restaurant, acting, writing, and drawing.

Unfortunately, I’ve learned that words can hurt more than I thought. Using the word “retard” as a punch line demeans my son, and thousands of others with disabilities. Making fun of people’s appearance, particularly those with Down syndrome is like a punch to my stomach. It hurts. That being said, I have learned I’m also much tougher than I thought. Words can hurt, but nothing will stop me from protecting my son and advocating for him and others.

I’ve learned that I have wonderful friends and family. (OK, so I knew my family was pretty cool and my friends too, but I didn’t know how great.) The first few weeks were tough for me. I didn’t know what having Down syndrome meant for my child, or for me. I just needed someone to listen to me. I just needed people to congratulate me on the birth of my child and not treat us any differently. And every one of my friends and family did just that. Thank you.

But most important, I’ve learned that my education has just begun. I look forward to what he will teach me and what we will learn together.

I’ve learned to look forward to our future.

Happy First Birthday To My Little Buddy!

Let Eric Play!

Eric Dompierre, a 19 year old junior with Down syndrome, will be ineligible to compete in football and basketball at Ishpeming High School his senior year because of age restrictions set in place by the Michigan High School Athletic Association (MHSAA). The current regulations require that a student can’t play in high school athletics if he/she turns 19 before September  1. Twenty-three other states allow waivers for students with disabilities.

Michigan isn’t one of them.

After first reading about this situation in March, I decided to search around the Michigan High School Athletic Association Web site to see if I could learn a little more about the regulation and why MHSAA is against the waiver.

In my search, I discovered a blog by Jack Roberts, Executive Director of MSHAA. On January 17, 2012, Jack wrote a blog post about dreams in which he stated how we all work toward making our dreams a reality. He went on to quote Jesse Owens saying: “We all have dreams. But in order to make dreams come into reality, it takes an awful lot of determination, dedication, self-discipline and effort.”

Eric has a dream—the dream to continue to compete in football and basketball his senior year.

I wonder if Jack has any idea how much harder people with Down syndrome work to get to this level? It starts with physical therapy before age one. I watch my son with Down syndrome work at least twice as hard as other babies to reach his milestones. He gives it his all, and I couldn’t be more proud. It takes determination, dedication, self-discipline, and effort—all of which he agrees it takes to make one’s dreams come true.

If Jack meant anything he said in his blog post, he might consider using his position to encourage principals and superintendents to allow the waiver on the age limit for individuals with intellectual and physical disabilities. (MHSAA’s bylaws state rules can only be changed by a two-thirds vote from superintendent and principals of MHSAA member schools.)

On May 2, Eric took his case to Michigan state lawmakers in Lansing, which is quite a distance from Ishpeming.

Determination. Check.

Dedication. Check.

Self-discipline. Check

Effort. Check.

Let Eric play!

Below are two articles regarding this situation and a petition to MHSAA:
http://www.nytimes.com/2012/04/11/sports/for-high-school-athlete-with-down-syndrome-age-is-an-issue.html

http://www.washingtonpost.com/sports/mich-student-with-down-syndrome-urges-lawmakers-to-reconsider-age-limit-for-school-sports/2012/05/02/gIQAz56LxT_story.html

http://www.change.org/petitions/mhsaa-allow-my-son-and-some-disabled-students-to-play-for-1-year-past-the-current-age-limit

My unexpected trip to Holland

They say your wedding day and the birth of your children are some of the best days of your life. I have found that to be true. My wedding day, the birth of my first son, and the first half hour after my second was born were the happiest moments of my life.

Then the moment pauses. The pediatrician examining my son said she had a few concerns: the extra folds around his almond-shaped eyes, the straight-lined crease on his hands, the hypotonia. Immediately after she mentioned the shape of his eyes I knew what she meant.

My baby boy has Down syndrome.

Blood is drawn. An echocardiogram performed. A social worker visits and hands me a packet of information. Another pediatrician confirms the preliminary diagnosis. I want everyone to leave and let me sleep so I can wake up from this dream.

As I held him he looked straight into my eyes. It may seem absurd, but it was as if he was trying to communicate to me that even though he wasn’t the little boy I expected he still hoped that I would love him. And I did. From that first moment I held him I was completely and utterly in love. I knew I would do everything in my power to be a strong advocate for him. To give him every advantage I could.

Less than two days after his arrival we were discharged. (My son was only a week early, and other than being a bit jaundiced, he had no health concerns. I was, and still am, very grateful.) I decided to take him for a walk around the Labor and Delivery Ward to show him off. As I walked along I passed a young man sweeping the floor. He stopped to tell me Congratulations.

He had Down syndrome.

As I turned the corner I broke into tears. It’s terrible to say, but it’s true. You see, my boys were going to be all-American, well-rounded quarterbacks—look out Peyton and Eli! I had laid out their future before one was born and before the other was two. But none of my visions had one pushing a broom around a hospital. I was mourning the loss of the child I had expected. And that was OK.

Once I collected myself, I continued on my walk. I ran into the young man for a second time. I was mad at God; how much more “in-my-face about the future” did he have to be? The young man asked about my baby: his name, weight, number of siblings. Then he congratulated me again, looked at my baby, and said, “He’s beautiful…he looks like me.” I swallowed back the tears and thanked him for his kind words.

Beautiful. Like Me.

He seemed to be referring to not only my son’s sweet face, but also his own inner beauty. He didn’t see the bleakness I saw. He saw a newborn not Down syndrome. Perhaps it’s a gift far greater than tossing a football in the NFL to look at oneself and see the beauty and not get hung up on what society deems beautiful and “normal”. A gift I don’t know how to pass on to my children no matter how hard I try, but perhaps, my son can instill in me.

My mother’s intuition tells me that my son will teach more than I will have ever expected. There will be struggles. There will be tough times. This world can be a cruel place. But something tells me the joys are going to be beyond my comprehension.

He is my pride and joy.
He is my beautiful boy.

(The poem “Trip to Holland” explains the title. http://www.our-kids.org/Archives/Holland.html)