Down syndrome awareness month, let's get this party started!

October is Down syndrome awareness month. I will not be posting every day, but I do have great plans to share some great stories with you from guest bloggers, as well as answering some good questions you sent my way. Of course I will be sharing some extra cute pictures with you of the rascal.

People with Down syndrome are not accomplishing great things. They go to college, hold steady jobs, marry, and live independently. The sky is their limit!

To start things off, I am sharing this great picture of Nichole, because really, the sky is her limit!

Letter to parents: My kid has cerebral palsy

This morning, Andy and I visited the first graders and talked about cerebral palsy. If you have been reading here, you know that I overheard a little girl talking about Nina, "She was born that way." I talked to her teacher and asked if we could come to class and talk to the kids, after all, it is only natural that they begin to notice differences.

Last Friday, I sent a letter to parents introducing my daughter with Down syndrome. I got a great response from that, so we planned on doing a little presentation on cerebral palsy and also sending a letter to parents talking about Nina and her CP.

Before sharing the letter, I want to thank you all for the thoughtful comments you leave here, and for helping me out. I love your ideas. Milena, thank you! Your idea with the apples was perfect!

Hello 1^st grade parents,

Today we had the pleasure to come and spend some time with all the kids in first grade. Two of our daughters are in first grade too. Our daughter Nina has cerebral palsy, and this is the reason that brought us to the class. As Nina’s parents, we are thankful that your children have accepted Nina and embraced her as one of their peers. It is a joy to see children understand that a person is a person, a friend is a friend, and disability is only a small part of who they are. Cerebral palsy is not what defines Nina. Your kids get it, we are so proud of them! 

Nonetheless, first grade kids begin to notice differences and ask questions, it is a natural part of development. Today we spent some time talking about differences, disability, and specifically: cerebral palsy. 

We began our time reading the book, “Rolling Along: The Story of Taylor and His Wheelchair ,” by Jamee Riggio Heelan. Taylor has cerebral palsy too, and he talks about his braces, his walker, his stretches, and the independence he gained when he got his wheelchair. Although Nina only gets to use her wheelchair on long trips, we brought it along for the kids to see and we let a couple of the kids roll it back and forth to demonstrate.

We all practiced making our muscles “jump.” When muscles jump they get really tight, and it is hard to move! Nina had a spinal surgery called a rhizotomy, where the doctor cut half of her nerve roots. Now her muscles don’t jump so much and that is the reason Nina can walk independently! It is amazing what doctors can do to help tight muscles.

To help us understand even better, we spent some time with apples. Yes, with apples! There are red apples, stripped apples, yellow apples, and green apples. They look so different, but they are all…apples! Not only are apples different but you can also make so many different things from apples. You can drink apple juice, or apple soda. You can eat applesauce, apple rings, apple chips, or yummy apple pie! These are all so different too! You cannot drink apple pie, but you can drink apple juice. You cannot eat apple soda, but you can eat applesauce! Apples are amazing, but people are even more amazing!

Having cerebral palsy means that sometimes your muscles jump and get tight. Some things are quite a bit harder, like talking, walking, running, and even standing. But  we are ALL different. We all have different hair color, eye color, skin color, some of us are short, and some of us are tall. And these differences are what make us all special and unique. Like we told the kids, “There is only one you!”

If you have any questions, don’t hesitate to pull us to the side or contact us, ellen@ellenstumbo.com. We love to talk to other parents about special needs. Before we had children with disabilities, we knew little about what it was like to raise a child with special needs, and we wish someone had been available for us to ask questions. We are very open, and love to share about our experience.

About the book I read to the kids:

I just recently purchased Rolling Along: The Story of Taylor and His Wheelchair , and I loved it! It does a great job at explaining to kids what cerebral palsy is and how it affects the body. It also does a great job pointing out that Taylor is more alike his twin brother - who does not have CP - than he is different. And this book does an outstanding job at explaining how wheelchair can be so freeing! For any parent struggling to whether to get a wheelchair or an adaptive stroller, you need to read this book!


(The link for the book is an affiliate link. I am not sharing the book only because of that, this is really the best book on CP I have read and I absolutely LOVE it. Great resource, and I want to share great resources with you too! Still, it felt right to let you know)

From Down Syndrome to Cerebral Palsy - An Adoption Story

I would have never chosen to be the mother of a child with special needs. Nonetheless, our second daughter, Nichole, surprised us with an extra chromosome and a diagnosis of Down syndrome. Dealing with her diagnosis was extremely difficult. All of sudden I had become the mother of a child I was not prepared or ready to parent. 

Yet, something significant took place during those first few months. I began to connect with other moms that had children with Down syndrome. These moms offered me courage, they gave me hope, they allowed me to dream big for my child. Nichole’s diagnosis of Down syndrome became a part of who she was, and not what defined her.

As we navigated the new world of special needs, we learned of the fate of children with disabilities in other countries. It broke our hearts to know these children were not valued in their cultures, and they were sent to orphanages and then mental institutions at the young age of four or five years old. We could not imagine life without our Nichole, and she had already contributed so much to our family. Her life had great value, it had meaning, and it was hers!

When we were ready to add another child to our family, we began to consider adoption. And not just any adoption, but the adoption of a child with Down syndrome from Eastern Europe. As we searched the many faces of beautiful kids with Down syndrome, it was the face a little girl with cerebral palsy that caught our eyes. Her diagnosis, however, scared me. I realized then how comfortable I was with Down syndrome, and how well it “fit” with our family. Cerebral palsy on the other hand, seemed daunting, difficult, maybe too much. 

I am guest blogging today at www.special-and-determined.com, click HERE to continue reading!

Disclaimer: I did not write the snippet about the adoption organization mentioned in the post (although we did use them when we adopted Nina) this was written by the blog owner.

HUGE apology!

Tonight I learned a lesson about embedding youtube videos. And it was not a pleasant lesson! First of all, please know that I would never post a Lady Gaga video. In simple terms, her lifestyle and choices are not compatible with my lifestyle and choices. I apologize if any on you clicked on the video and were offended!

So, this is the lesson I learned today: when you embed a video on youtube (and because youtube is getting so "smart") make sure the video is not part of a "playlist." IF the video is part of a playlist, whatever code you get for the video you are watching is most likely not the the code that correlates to the video, but rather the code for the first video in the playlist. In the case of the video I posted, I suppose this particular video was a part of a "playlist" with several "I was born this way" by Lady Gaga videos. So when I copied the code, I did not realize I was getting the first video in that playlist and not the one I was watching.

In my last post I share some girls at school were talking about Nina, and I heard one say, "she was born that way." Lady Gaga's song kept playing in my mind after that comment BECAUSE I had watched a flash mob dance comprised of children and adults with disabilities singing and dancing to this song. It was sweet! People with Down syndrome, Cerebral Palsy, and other disabilities performing at a mall. THAT was the video I always intended to show!

I fixed the code, so it's all good. Still, if you clicked on it and were shocked (and believe me, I guarantee you I was even more shocked, I was mortified!) I really apologize. A mistake I hope I never make again!

She was born that way

This morning, as Ellie, Nina and I walked to school, I saw a group of second-grade girls gathered around, talking, and looking at Nina. As we approached the group, I overheard one say, "She was born that way."

I was not sure how to respond. I was not offended, it didn't bother me. At that age, kids are learning about their world, and what makes us all different. And yes, Nina was born this way. There is nothing about her Cerebral palsy she can change or make different. Yes, she was born this way.

Last Friday, I sent a letter to all the parents that have kids in Nichole's class talking about her Down syndrome. Last year, I even went to her school on Down syndrome day and gave a school wide presentation about Down syndrome. I also sent a letter home with all the students.

I had already talked to Nina's teacher about coming to her class, and reading a book to her classmates about Cerebral Palsy. This is the time I am planning on sending our "introduction" letter. But the experience form this morning is making me think I need to go to all the classrooms and talk about disability, and Cerebral Palsy. Because yes, Nina, and Nichole, were born this way.

I think you should talk about...

Down syndrome awareness month is just around the corner. October will be here before we know it! As I begin to plan and prepare, I was hoping to get some feedback from you!

Do you have any questions specific to Down syndrome? I would love to hear those?

Any questions about Nichole? Her development? What her days look like? I would love to answer those questions.

Is there something you think I should cover in regards to what it is like for us to have a child with down syndrome?

And lastly, if you do have a child with Down syndrome, I would love to have you guest post!

Thank you! I always appreciate all the input and ideas I get from you.

Letter to parents: My kid has Down syndrome

Last year, Nichole was in a special education classroom. She did okay, but the teachers agreed that was not the best environment for Nichole. This year, Nichole is in a typical preschool classroom. Her class is co-taught by a regular teacher and a special ed teacher. I love both of them, they are fantastic. The special ed teacher goes above and beyond and takes the time to run through Nichole's day with me when I pick her up. We are so lucky to have her. The aides in her classroom are incredible, and the other teacher happens to be a teacher Nina had last year, so we already knew her. They do great with Nichole, there is no doubt about it.

That is the "teacher" side of school. However, there are friends, and there are the friend's parents! Following the example of many in the Down syndrome community, I decided to send a letter "introducing" them to Nichole. I want them to "see" more of her, besides lining up in the hall, or her total disappointment that it is me that picks her up and not her daddy. Yes, she is a daddy's girl through and through. Want to know what she can say with clear speech? "No, no mommy. I want daddy." Great!

Anyway, I thought I would share with you the letter we sent to her friend's families:

Yes, I included this picture, just without the text :)

Dear preschool parents,

I would like to introduce you to my daughter, Nichole. I know…who sends a letter introducing their child, right? Nonetheless, I want to share with you a little bit about her. After two and a half weeks in school,  I am sure you have seen Nichole lining up in the morning with her daddy, or maybe you have noticed her at the end of the day, when she turns her face away from me, hands out, and clearly says, “No, no mommy. I want daddy.” And then the drama queen kicks in full swing!

Nichole has Down syndrome, and while that is a part of who she is, it is not what defines her. Nichole is a little girl first, and Down syndrome is part of her genetic makeup, just like her green eyes and dark hair.

Nichole is almost 5 years old. She loves princesses, Barbies, Curious George, and especially Strawberry Shortcake. She loves to play pretend and dress-up. She is also a little performer, she likes to put on shows for mom and dad, and she likes to make people laugh. Sometimes, when other people are sad, she gives hugs and pats their backs to make them feel better. She adores her two big sisters (they are first grade ). Yet I am sure you know her favorite person in the world is her daddy! Nichole’s favorite snacks are Doritos, goldfish crackers, and M&Ms. She is a rascal, a dancer, a rascal, a trampoline jumper, and a rascal. Sounds like a pretty typical little girl, don’t you think?

 While Nichole has some trouble with her words – and she uses sign language – Nichole is more alike other 4-year-old little girls than she is different. Nichole is also very shy outside her family, so I think it will take her a while to warm up to her teachers and your child. She will eventually open up and try to boss them around. Did I mention she is a rascal?

Although it was hard to deal with Nichole’s diagnosis at the beginning, there is nothing about her that our family would change. She has brought more joy to our lives than we ever imagined. She is absolutely perfect!

If your child asks about what is “different” about Nichole, a simple explanation is that Nichole has Down syndrome, which means that sometimes things take her a little bit longer, like talking, walking, counting. You can also explain to your kids that we are ALL different. We all have different hair color, eye color, skin color, some of us are short, and some of us are tall. And these differences are what make us all special and unique. There is only one you!

If you have any questions, don’t hesitate to pull me to the side or contact me, ellen@ellenstumbo.com. I always love to talk to other parents about Down syndrome and other special needs. Before Nichole was born, I knew little about what it was like to raise a child with special needs, and I wish someone had been available for me to ask questions. I am very open, and love to share about our experience. We are living and loving life with Down syndrome!

In the back of the page, I included some quick facts about Down syndrome.

The letter is going with the kids in their backpacks today! Exciting!
 

My Beautiful, Different Than Expected Life!

Did you ever think that you would be where you are right now? Are your circumstances what you expected them to be? Your marriage? Your children? Your career? Or is your life different than expected?

When I was a Junior in high school, the associate pastor from our church joked with me once and said, “Ellen, maybe someday you will marry a pastor.” To my parent’s great embarrassment I laughed at his comment and assured him, “I will never marry a pastor. I don’t want that kind of life, I want so much more. I want to have a successful job, money to travel the world, live in a nice house, drive new cars, and whatever else I fancy.” The pastor was generous; he smiled right back and assured me, “You never know what the future holds.” I was sure being a pastor’s wife was not in my future.

It was with great shock I called one of my good friends when we were in college and said, “I really like this guy, he is amazing, goodness I like him so much I could marry him, but…he wants to be a pastor!” He stole my heart, what can I say. I married a pastor, and our lives are not what I expected, this life is beautiful. Although it is not easy being the “pastor’s wife” I now look back and laugh at the silly teenager that cared so much about material things. We have traveled the world together on mission trips, and in our journey to adopt our middle child. Money does not measure our success. And I happen to think our little house is pretty cute, comfortable, and most important, it is home.

We were kids!

 I never imagined I would be the mother of a child with Down syndrome, or any special need for that matter. I would have been the first in the line of those that claim, “I could never do it!” And I wrongfully believed the irrational idea that, “God only gives special children to special parents.” I struggled with Nichole’s diagnosis of Down syndrome, but God changed me. No, he transformed me. The beautiful life of our daughter Nichole led us to adopt a little girl with cerebral palsy. Two kids with special needs? This is definitely not what I expected when I thought about being a mom. But I wouldn’t have it any other way. I love the gifts I have in each one of my girls. They are so different, so unique, so precious.

A day that changed me (<---Link!)

Oh how great were the plans I had envisioned for my future. I had the drive to pursue those passions, yet little by little, I changed. From career choices, investing time in projects, and learning about the things that really matter in life, I became a different me.

This life I live is different than I expected. A rich mosaic put together, piece by piece, creating something beyond what I ever envisioned. I am thankful that my plans were not to be. Thankful for this beautiful life God has given me. Oh, there is plenty of brokenness in me – selfishness, lack of discipline, jealousy – but I am learning to find beauty in the broken places of my life, allowing God to transform me and to guide me in this journey of life.

My beautiful, different than expected life!

This is a post for the writing prompt community. Join us and share your stories about something that was different than you expected.

Parents, Keep Your Focus

Once more I am linking up with Gypsy Mama for 5 minute Friday. Where you write for 5 minutes on a topic without editing or rewriting. (So forgive the typos or grammar mishaps).

Theme: Focus

Go!

I get tired and bogged down by the daily chores in my home. The laundry, dishes, groceries, and meals. A constant song of "I want," "I need" "Help me," "Mommy please." In the business of it all, I lose focus of my role as a mom beyond those tasks, and my heart begins to look in other places.

I start to dream about big things outside my home. Maybe writing, maybe a part-time job now that all girls are in school, or maybe a place where I can give myself to and feel useful. In no time, I lose focus, and my enjoyment in life seems to come not from my role as a mom, but by the accomplishments I gain. How many published articles, how many people attend my Zumba class, or how well our ministries at the church are going.

But at the end of my day, when I look at the things that really matter in life, and when I put my priorities into place, nothing is more important than my children. No writing contract, no part-time adventure, and not the success of a children;s ministry. Because at the end of the day, if I have sacrificed my children in order to gain the world, I have lost the most precious treasures entrusted to me.

I would do anything for my children. No sacrifice is too big. Yet I often sacrifice them by giving my time, energy, and affections to my other pursuits. And so today I am reminded of what my husband once said, "You don't want to sacrifice your children on the altar of success."

My girls bring me great joy. I cherish them and delight in them. They give me life, they fill my heart and soul. They are my treasures, and it is my greatest desire to love them well, and be always present and available in their lives.

Parents, let's keep our focus, let's love our children well. Let's not sacrifice them on the altar of success, it isn't worth it.

Stop!

Like this post? Share it with your friends!

An Orphan's Bond of Friendship

Abandoned children fill orphanages around the world. Too many little souls without a mom or a dad, without someone to call them their own. With a lack of stable and on-going relationships, many of these kids develop RAD (reactive attachment disorder) where they struggle to form lasting relationships with their caretakers or adoptive parents. They learn at an early age that there is nobody they can trust. The pathways that the brain creates the first three years of life are hard to break. Kids with RAD will not “grow out of it,” it is a reality for many adoptive parents that creates a challenging relationship. 

When we first adopted Nina, she cried for one of her caretakers, “Nina want Ira!” At the time, I felt anger towards this woman. Now, I am incredibly thankful for her. Nina was able to bond with one of her caretakers, and I do believe that relationship made a huge difference in Nina’s ability to bond with me. Because Nina was loved, she was able to love back.

But there was another strong relationship Nina had in the orphanage. It was not with an adult, but with one of the other children. Nina had a best friend, the closest thing to a sister, to a family. Nina had Oksana. Both girls orphans, both girls with cerebral palsy.

When I visited Nina, Oksana would cry and ask to come with us. Most of the time she was silenced by the caretakers, but for one of the visits they allowed Oksana to play with us. During the first half of the visit, Oksana melted into my arms, resting her face on my chest, soaking in all the attention she could get. Eventually she ventured to play with Nina, and I watched their simple interactions. They talked to each other, Nina asked Oksana to get things for her, since Oksana’s mobility was much better than Nina’s. They played with a puzzle, looked at pictures, and often looked at each other, always with a smile.

After that visit I asked about Oksana, and the translator informed me they would soon be transferring her to a mental institution. I asked if the orphanage would allow me to find her a family, if they could hold her in the orphanage a little bit longer. There were no promises made, but that nightI wrote about Oksana on my blog, hoping that it would reach the right family.

Shortly after arriving home with Nina, I received an email asking about Oksana. Erin and her family committed to her adoption. I kept in contact with Erin through email, and eventually we began talking on the phone. We seemed to get along pretty well, and I wanted to offer as much help and support as I could. After all, Oksana had a special place in my heart. This was Nina’s closest relationship from her past. This was her “sister” finding a family.

Andy and I tried to be as available, open, and supportive as we could during their travel time, and after coming home. In no time, Erin and I became our “go to friend” when it came to our girls. It was only natural that at some point we would travel to finally meet the Loraine’s and reunite Nina and Oksana. That was a trip we will never forget (click on the link and check out Erin's post, there is a video of Nina and Oksana seeing each other for the first time after being adopted, it is awesome!). We finally got to meet some of our dearest friends. Our entire family clicked really well, and it felt as if we had known each other forever. And it was a treat to see Nina and Oksana together. Last Thanksgiving, Loraines came to visit for a few days. Again, we had a great time with friends.

First meeting during July 4th

 Thanksgiving meeting, it was hard to get Oksana to smile for the camera, but she smiles all the time!

Last Monday, I shared with you a video of Nina jumping independently. I also posted it on facebook. When I picked Nina up from school I told her there were many messages for her from people cheering her on. She was happy, but she had only one question for me.

“Did Oksana leave me a message?”

“Not yet sweetie, but her mommy did and I am sure she will show her the video.”

“I hope so, because I know Oksana loves me more than anyone else, and I want her to be proud.”

I often think of Nina being alone at the orphanage, with no one that loved her like you love a family member. But I was wrong. Nina had someone, she had her best friend, Oksana. And I realize more and more how important that bond was for these girls, and how incredible it is that their bond has brought our respective families together. I count Erin as one of the closest friends I have ever had, and I met her thanks to Nina and Oksana.

What a blessing it is that Nina and Oksana will be friends for a lifetime and I realize now that the bond she has with her is also one of the strongest bonds she will ever have. Perhaps even closer than the one she has with her sisters. What a joy to continue to bring them together.

And who knows, maybe someday they will be roommates at Shepherd’s College and their story will be known!