The New School Year Can Be Terrifying by Ellen Stumbo

It’s that time of the year when kids go back to school. A new year. A new teacher. Perhaps even a new backpack or wardrobe. But it also means new classmates. New friends.

As a special-needs mom, the new school year can be terrifying. I am not sure what your experience was, but when I was in school, the children with disabilities were not in class with me. They either had their own class or their own school.

Back then, I was afraid of disability. I was told to look away, to ignore, to not ask questions, to not be rude. So I thought disability was bad. Really bad. Then I became a special-needs mom and let me tell you, this is how you take a crash course on disability.

But I remember being on the “other” side, the side where you are not so sure how to respond to people with disabilities, how to act around them, perhaps even how to treat them or talk to them. And you know, your child might be going to school with a peer with who has a disability. Thankfully, we now practice something beautiful called inclusion, where kids of all abilities learn together, and learn from each other.

And this is why a new year is terrifying. Will my daughter with Down syndrome have friends? Will there be a kid in their class that will be able to look past the poor speech and see the wonderful, beautiful, funny person that she is? Will my daughter with cerebral palsy have friends that play with her during recess? Will they still include her even if she cannot run and keep up with them?

I want my children to have friends.

So dear mom with typical kids, it’s okay if you have not taken the crash course on disability (or any course at all). The only thing that matters is that you encourage your kids to get to know my kids. That you teach them that although they might be different, we are all uniquely gifted. That you stress out that disability is just a part of life, and not what defines a person.

And you know what, as your kids get to know mine, maybe we can get to know each other too. I might also need a friend.

Ellen Stumbo Head ShotEllen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor. Visit her at ellenstumbo.com.

Small Progress by Ellen Stumbo

mat man

“Mom. Mat Man?”

Lately, before we begin our bedtime routine, Nichole holds a box of wooden pieces and foam shapes. She is ready for quality time with mom. She is ready for Mat Man.

We sit on the living room floor and I start singing the song. I am a terrible singer. She doesn’t care.

Mat man has one head, one head, one head. Mat man has one heaaaaaaad! So that he can think!

I hold two of the big curves by my head, making a circle. Nichole laughs at me, “You funny!” She reaches out and imitates me. Then she carefully, oh so carefully places them on the carpet.

We make Mat Man.

“Again?” she asks.

Then she asks to make letters. Finally, with the wooden pieces we spell, “Nichole.” She points at each letter and says its name. She knows every letter of the alphabet, but her favorite letters are the ones in her name. N. I. C. H. O. L. E.

My daughter is five years old, and she has Down syndrome. She struggles with her speech, and we are not sure where she is at yet in her intellectual abilities since she has a hard time with her words. This is a learning time, but there is also a heart connection taking place as I find myself overwhelmed with love for this little girl and so incredibly proud of her progress.

And then I think about myself, the many disabilities I have: selfishness, self-reliance, greed, jealousy, lack of self-control, etc. Yet sometimes I begin to get it, a little at a time. As if I was sitting on the living room floor with God, practicing my trust in Him in little things. And I know He smiles at me overwhelmed with love too, so proud of me for those small accomplishments and the ways in which I make progress in the deep places of my heart.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

A Gift of Joy by Ellen Stumbo

060910_Barbies_572_pbc
source: Tulane Publications

She claps her hands, smiles, and her eyes sparkle with excitement.

“Mom! Daddy!” she says, inviting us to clap along with her.

It doesn’t matter what we are doing, every time, every single time we find her joy irresistible. So we clap with her. In her excitement, she takes a bow and laughs. So we cheer for her and clap some more.

When her movies finish, as the credits roll and the fun music plays, we go through this routine. Sometimes I wonder if she thinks, “That was a great show, it was fun, I really enjoyed it. I feel so happy I cannot contain myself, I need to clap, cheer, and invite others to join me in this moment of joy.”

My daughter might face extra challenges because she has Down syndrome, but her ability to enjoy life and celebrate every day moments surpasses the ability I have to do the same. So she stands before me clapping, smiling, with joy radiating from her little body and I can feel that joy and excitement.

She gifts her enthusiasm about life, and it is contagious.

I sometimes hear people question if people with Down syndrome or other disabilities are contributing members to society. Maybe once I wondered the same thing. But I know better now. While their contributions might not include being doctors, scientist, or teachers, their contributions pierce through the very essence of what makes us human: love, joy, kindness, compassion, understanding, and complete acceptance. Contributions that have already touched my heart and changed my life.

So I clap and celebrate when the Barbie show is over. I delight in the little girl that takes a bow, and sometimes I bow with her too, a sign of thankfulness for the joy she brings into my life. The gratitude I have that God chose me to be her mother.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

I See You by Ellen Stumbo

Angel with dirty face
source: Calhoun Abbott

Dealing with my daughter’s diagnosis of Down syndrome was difficult. There were many tears, and a broken mom shaking her fist at God pleading, “Why me?”

Yet the power of love is strong. Soon the sadness became wonder for my little girl, whom although different in some ways is perfect in the areas where I lack. There are areas in my heart where I have disabilities, yet she is so whole. Love, joy, acceptance, empathy, faith … they come to her so naturally, so effortlessly, and I am the recipient of such gifts when I need it most.

Nichole is five years old, her speech is limited, yet I often wonder if her words are messages from God, reminding me that He is here, that He sees me, and that He cares. She has a keen ability to know when I need to be encouraged.

“Mom,” Nichole grabs my face between her chubby short hands, making sure we make eye contact. Her face breaks into a smile, a smile so full of love she melts my heart and I am overtaken by emotion.

“Mom,” she says again, “You Ah Pee-Tee.”

Her words surprise me. Her message, so clear. My daughter thinks I am pretty. But it is more than that, because I have been struggling with ministry. Sometimes being a pastor’s wife is hard, ministry is difficult, and I wonder if God sees me, struggling, trying to stay afloat, and being faithful to His call.

I see you, I feel Him say, I see you.

Nichole does not let go, she keeps looking at me, smiling. It is not the first time I see His love through her eyes, or His care through her smile. And even His encouragement, through that broken speech that communicates so much to my heart.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

Special Needs and Resolutions by Ellen Stumbo

Happy New Year!
source: erjkprunczyk

With the New Year here, it is time for me to think about resolutions. The thing is, having children with special needs has changed the way I look at these hopeful declarations of a better me. So I turn to my daughters and see in them examples of who I want to be.

1. I want to love people despite of their appearance.

I tend to judge and keep my distance from people based on their exterior. My daughter with Down syndrome has the ability to look past appearances and accept people fully.

2. I want to give it all.

Sometimes, I don’t try very hard; I just do enough “to get by.” My daughter with cerebral palsy gives it her all, she is fully in, trying hard, never giving up. Everything she does, she does it to the best of her ability.

3. I want to experience joy in the little things.

My daughter with Down syndrome seems to find joy easy. She is not just happy; she is filled with joy (when she is not filled with crabbiness). The way her face lights up with a smile, and the deep laugh that comes from her soul when she is surprised with a bowl of ice cream reminds me I need more joy in my life.

4. I want to celebrate with others.

In our home, we celebrate every little accomplishment our girls achieve. Celebration is a normal part of our life; we clap, jump, and cheer often. I want to take that beyond my home, I want to encourage others and celebrate with them. We all need more celebration in our life.

5. I want to make a difference.

The world might see my children as less than perfect, but I know that God has a plan and a purpose for their lives. My children have inspired not only me, but many others around them. Hopefully some day, I will be able to do for others what they have done for me.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

Witnessing Miracles by Ellen Stumbo

talkative little girl closeup
source: zen

I watch as my daughter struggles to walk. Slowly, she takes one-step and catches her balance, then the other foot comes forward, dragging a little behind her. When she finally reaches the couch in the living room, she throws herself on the soft seat. She looks up at me, beaming, “I did it mom! I did it! I walked all by myself!”

So I laugh and cry, clap and jump, and say between the sobs and the laughter, “You did it! You walked!” And she stares at me confused because it is possible her mother lost her mind.

“Mom, are you happy, or are you sad?” she asks tentatively.

“I am so happy that I am crying. I have tears of joy Nina!”

My daughter’s body is tight from cerebral palsy. Simple things, like walking, are not simple for her. I know that sometimes she wants to give up. Her mind fights her body and her body fights her mind. So we cheer her on, we tell her she can do it, and we believe in her full potential. And she tries once more. Then, after years of trying, she finally takes those precious first steps that bring out the tears and the laughter, all mixed together in one ball of emotion. I feel so proud!

Yes, sometimes having a child with special needs can be difficult. Having a 6-year-old child who needs a wheelchair to go for a “walk” can be challenging. But then there are those magical moments. The milestones that are no longer typical, or expected, because they become like miracles. Those are the moments that make all the hard work pay off. In this journey of special needs, we celebrate fully, with abandonment, and with great joy.

Like Erma Bombeck said, having a child with special needs means you witness miracles … and you know it.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

God Came Through by Ellen Stumbo

“God doesn’t call us to be comfortable. He calls us to trust Him so completely that we are unafraid to put ourselves in situations where we will be in trouble if He doesn’t come through.”
Francis Chan

 

When Andy and I saw the picture of a little Ukrainian girl with cerebral palsy, we felt as if we had been looking at our daughter. A sweet smile and a short paragraph was all we had, but our hearts began to beat for adoption. Yet, while the excitement grew, so did our apprehensions.

“Can we really do this financially?”
“Will Nina fit in with her sisters?”
“Will Ellie feel resentful having two sisters with special needs?”
“Could Nina’s needs be more than we could handle?”
“Are we alone in this?”

Four weeks before our travel date, we found ourselves $10,000 short. Finances had been the greatest hurdle before committing to adopt, and we were in the place we feared. We were discouraged. It was then I came across the quote from Francis Chan.

Okay, Lord, we are over our heads here. If this is what You have for us, You will come through and blow us away.

He did. In the short weeks that followed the debt was covered. Our mailbox was full of letters and checks with generous donations. God’s reassurance: Yes, My child, this is My will.

We did not know what the future would look like with an adopted child. However, we trusted God so completely that we put ourselves in a situation where we needed Him to come through; not only during the adoption process but also in the years to follow. Although there have been trying times in the last two years, all those first questions seem insignificant in light of the love we now have for our daughter.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor. You can read more about her adoption journey in the November issue of ParentLife in her article “Orphan No More.”

Not Easy but Good by Ellen Stumbo

My daughter has Down syndrome, and dealing with her diagnosis was difficult. I pictured a life defined by limitations, rather than possibilities. After a while, I began to see the blessing that I had in my daughter, and I came to realize she was the baby I always wanted, I just never knew it before.

If I could go back in time, this is what I would tell myself:

 

  • Dealing with her diagnosis will be one of the hardest parts of the journey. The rest is simply everyday life.
  • Grieving comes in waves. New stages might require for you to grieve all over again. It’s okay. It does not mean you don’t love your child or that you have not accepted her diagnosis. It is normal to feel this way.
  • Reaching milestones will be an accomplishment of extravagant joy and celebration.
  • She will be a child first. Her disability will only be a part of who she is, not what defines her.
  • You will love her with a fierceness that will surprise you and fuel you every day.
  • Your heart will expand a 1000 times over.
  • She will bring you incomparable JOY.
  • You will come to realize how much you needed her.
  • Thanks to her, your priorities will change as you understand what really matters in life.
  • It will not always be easy, but it will be good!
  • You can do it, and you will be better than okay.

My daughter has collaborated with God to work in my selfish heart. A heart that many times is so lost in this world that it forgets that the standards I live for are not the ones set by people, but those set by God. It has turned out Down syndrome was not a limitation, but a gift that has expanded my heart.

October is Down syndrome awareness month. As I look at my daughter, I recognize I have much to celebrate and be thankful for.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

My Juggling Act by Ellen Stumbo

Juggler

“Mommy! I wish I had no sisters because I never get to be alone with you!”

Ellie, my oldest, stood with a frown on her face and hands on her hips. I had just walked in the house, coat and shoes still on, with Nina, my second child, on my hip. We were returning from a doctor’s appointment that had taken all morning. I was exhausted, and Ellie’s words threatened to buckle my knees.

It was true. I could not remember the last time I had spent one-on-one time with any of my girls if it did not involve a doctor’s appointment or a therapy session. Common in our family as two of my girls have special needs.

I was trying — trying really hard — to make a full schedule work with my 2-, 3-, and 4-year-old girls. While I was being efficient, the relationships were dragging behind.

It was time for a change. My girls needed me.

Ellie and I began to do things together. Things as simple as going to the grocery store, just the two of us. When the little sisters take naps, we actually play together, and I am reminded how much fun Barbies can be.

When I take Nina to a doctor’s appointment, I take a little longer. We go to a store or restaurant and we spend some time together, just us. Sometimes, when I have quick errands to run that will not require me to get out of the car, I bring her along and we talk. (Nina has Cerebral palsy; her mobility is limited.)

Nichole and I take full advantage of her sisters going to preschool three times a week. We have wonderful mornings of library time, cuddle time, and learning time.

Having three little girls means that I am a busy mommy. But it also means that they need time with just their mommy (and daddy) to feel valued and important. In my juggling act as a mom, I chose to make this a priority, because it really matters.

Ellen Stumbo is a wife, mom, freelance writer, and blogger.

Photo used with permission of Flickr Creative Commons.

If you have more than one child, how do you find time to spend one-on-one time with each child? Share your ideas with other readers by leaving a comment!