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.

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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.

Sun Shine Down — Book Giveaway

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Today is the first of October. The month of colorful fall foliage, apple cider and cinnamon-sugar donuts, pumpkins and cornstalks, and Halloween.

It’s also National Down Syndrome Awareness Month. Since DS became a part of my life two years ago, I’ve read several memoirs. Each book offers a different perspective. This past month I had the privilege of reading a new book by Gillian Marchenko titled Sun Shine Down.

It usually takes me a couple of weeks to finish a book. Once I picked up Sun Shine Down; however, I couldn’t put it down. What set this memoir apart from the others is that Gillian was living in the Ukraine at the time of her daughter’s birth–a country where children with DS are institutionalized at a very young age. Gillian received a birth diagnosis. In addition to the diagnosis, she received little support and comfort from the hospital, and her daughter was in the NICU for six weeks.  Gillian struggled with the diagnosis, even after her return to the states. Her writing is raw and honest. She doesn’t make apologies for how she felt. Yet her writing shows that after the clouds disappear, the sun will shine down again.

Below is an interview with Gillian. Leave a comment at the end of the post for a chance to win a copy of Sun Shine Down. Also, look for a guest post from Gillian next week that tells how she and Polly are doing today.

Q. Why did you decide to write this story?
A. E. M. Forster said, “How can I know what I think till I see what I say?” I am a life-long journal keeper, but after the birth of my third daughter and her diagnosis of Down syndrome, writing became necessity. The first year of her life I wrestled a hallowing grief over the child I expected and the mother I was to become on the page. My journaling delved deeper as my daughter grew. Images, situations, and details bobbed up to the surface of my conscience. A fear of brokenness; broken people, broken things, and ultimately, my own broken heart, had been tucked inside me since childhood. I wrote, and a thought nagged. Perhaps these words were meant to be read by others?

A memoir emerged.

Q. Were you nervous for other moms to read that it took you a while to love Polly?
A. Yes, that still makes me nervous. I know some will read Sun Shine Down and think that I was self-centered, uncaring, and stupid, because I was. But I have to believe that if there are moms angered by my story, there are probably twice as many thankful that someone was honest enough to talk about the hard parts. I have a quote in the book that I whole-heartedly promote: “I know of other mothers who had children with special needs and right away they loved them and decided to fight for them. That’s not my story.”

Q. You are a pastor’s wife. Was it difficult to share the hard parts?
A. While I was writing, and throughout the process, no. But I have to be honest, once the book was published, and my struggles and sins were out there for all to see, yes. In the beginning though, when my husband Sergei and I agreed I would mold my writing into a book, we also agreed I absolutely had to share the hard parts. Without hard parts, the good parts aren’t as good. Without darkness, the light is not as bright. Grace lives in the hard parts.

Q. Do you miss Ukraine? Will you ever go back to live there?
A. Yes, our whole family misses Ukraine. We would love to go back, but when Polly was around three years old she suffered a massive stroke and was diagnosed with a second syndrome called Moyamoya. She endured two brain surgeries and is doing phenomenally well. But chance of stroke is there, and so it is best for us to stay in the States. That said, if we hear from God and he tells us to go, we will listen. We also plan on short-term trips, especially to facilitate seminars and support groups for families who choose to keep and raise their children with special needs in Ukraine.

Q. If you could go back in time and have a conversation with yourself, what would you say now to comfort and encourage the Gillian who had just given birth to a child with a disability in a foreign country?
A. I wrote a little bit about that in my memoir:
“I wished she’d (Polly) been cheered for, smiled at, and loved from the moment of her first breath. I wished for a do-over. I wanted to do her birth again. I would wake up the morning after her birth in Ukraine, thankful for the gift of a child. I would be more present and open-minded. I wouldn’t cringe when I heard about the possibility of Down syndrome. I wouldn’t make snap judgments that imagined a little girl standing off to the side of life staring blankly with her tongue sticking out, as if that defined the quality and pleasure of her life. Instead, I would imagine my daughter: an adorable girl with sassy, hot pink glasses, who loves music and has a keen sense of humor and the desire to be a good friend. If I were allowed a do-over for Polly’s birth, I wouldn’t run to my bed and curl up into a ball upon hearing her diagnosis. Instead, I’d bend down and place my hand on her chest and vow to love and protect her. I would thank God for her. I would assert that even though difficulties would arise, I would be privileged to be Polly’s mother.” Sun Shine Down, page 124

Today, if I could go back in time and have a conversation with myself about having a child with a disability, I’d say this: “Give it time. It is OK to grieve. But love your child. Let the baby change you. And know that God has a plan to use you and your child that is beyond your comprehension or ability.”

Q. What is the main takeaway of this book?
A. Goodness, tough question. What is the main takeaway? I think that depends on the reader. The essence of Sun Shine Down is this: I didn’t want my baby with Down syndrome, and now I can’t imagine life without her. The takeaway could be many things. I’ll let the reader decide their own takeaway.

Gillian Marchenko is an author and national speaker who lives in Chicago with her husband Sergei and four daughters. Her book, Sun Shine Down, a memoir, published with T. S. Poetry Press in the fall of 2013.

She writes and speaks about parenting kids with Down syndrome, faith, depression, imperfection, and adoption. Her work has appeared in numerous publications, including Chicago Parent, Thriving Family, Gifted for Leadership, Literary Mama, Today’s Christian Woman, MomSense Magazine, Charlottesville Family, EFCA Today, and the Tri-City Record. Gillian says the world is full of people who seem to have it all together. She speaks for the rest of us.

Follow Gillian and her family at http://www.gillianmarchenko.com.

The book giveaway has ended. Congratulations to Michele!

Faith, Hope, and Love

Two years ago yesterday Down syndrome became my reality.

Two years ago today I sat in this same hospital where I now sit. Scared.

Two years ago today I watched as doctors performed an echo-cardiogram on my son who was less than 24 hours old.

Two years ago today I ran into a young man with Down syndrome sweeping the floors of the maternity ward. Scared for my son’s future.

Two years ago today my then dreams and hopes turned to fears.

Two years ago today I knew one thing. I loved my son.

Today Down syndrome is just another part of my life.

Today I sit in the same hospital. Happy. Smiling.

Today I’m thankful for my son’s health.

Today I saw several young people with Down syndrome. Working. Enjoying lunch. Enjoying each others company. No longer scared for my son’s future.

Today my fears have turned to hope.

Today I know much more.

Today one thing remains from two years ago today: my love for my son.

“And now these three remain: faith, hope, and love. But the greatest of these is love.” -1 Corinthians 13:13

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!