Communication with My Daughter Who Has Down Syndrome
Communication with children who have special needs often requires creativity and flexibility. Today, guest blogger Ellen Stumbo describes the struggles and hopes she has with her daughter Nichole who lives with Down syndrome.
Just for a Day
by Ellen Stumbo
Just for a day, I wish my daughter with Down syndrome did not struggle with her speech. I know she gets frustrated when we don’t understand her, she tries as hard as she can to enunciate her words right, but sometimes, we still don’t understand what she is saying. She gets irritated, swings her little arms in desperation and yells at us. I don’t blame her, I would feel angry too.
Just for a day, I wish I could have a conversation with Nichole like I do with my other two daughters. I want to hear about her day at school, about what she likes and doesn’t like. I would ask her all about her favorite things and I would spend the day talking, chatting, singing with her.
Just for a day, I wish Nichole’s speech was clear so that people would actually take the time to notice her, to enjoy her, and to listen to what she has to say.
Just for a day, I wish Nichole could speak her mind, all of it, good and bad. Non-stop chatter coming from her lips and straight into my ears.
Just for a day, I wish it was easy to communicate with my daughter.
She Has a Lot to Say
Nevertheless, Nichole does talk. Sure, her words and phrases might be hard to understand, but she has stories to tell us and things to say. The older she gets, the better her speech becomes, and I am confident that we will get there, that someday she will be talking so much we might even ask her to stop.
Things take Nichole a little bit longer, and it is easy to become inpatient and take what we have now for granted. I love the fact that Nichole grabs my hand and shows me what she wants or needs. I love the fact that she is willing to repeat words after me and her sweet voice is one of the loveliest sounds I have ever heard. I love her “daddy” call, and her laughter that comes from such an overflow of joy. I love how she surprises and amazes me with new words or new statements. And I know we will get there.
How Nicole Communicates
I love the way she signs, or the way she makes up signs. I smile thinking about the way she grabs my face to get my undivided attention, and to make sure I am listening to what she has to say.
I love the way she embraces people without caring what they look like or smell like. I have seen a grown man with tears in his eyes, as he expressed, “She makes me feel loved.” And I realized that without words my daughter was able to communicate a love to this man he had never received. And suddenly I wish I could speak her language of unconditional love.
And her speech will not always be an issue, I will have conversations with my daughter, and not just for a day.
Your Communication Struggles and Hopes
Thank you, Ellen, for transparently sharing your dreams for Nicole. She shares more of them at her blog, These Broken Vases. You can also share dreams you have about communicating with your child in the comment box. Ellen and I would love to hear from you.
I like the way tht “Just for a Day” captures the frustration and challenges that face people with Down Syndrome and their families and I appreciated the hopeful tone and recognition of Nicole’s special gifts. As the parent of a child who has autism and has almost no verbal ability, I would like my daughter to be able to communicate anything to me, “just for a day” but I now that, at 15, it is unlikely that she will ever have a conversation with me, “this side of heaven”, as author and advocate Joni Erickson Tada likes to say. My faith and belief give me hope that one day we will be with our Lord and be free of the constraints that autism puts on our ability to communicate with one another.
Several years ago I wrote a poem about this entitled, My Daughter of Mystery. Thank you for sharing your story and for giving me the opportunity to share some of ours.
My daughter is a mystery,
She seeks me out with a gesture,
She loves me with a short gaze,
She looks like a beautiful angel,
But the angels hover over to protect her.
My daughter is a mystery,
She is a constant motion,
She swings and swims with ease, seeking relief
She loves to laugh
But I do not understand what amuses her.
My daughter is a mystery,
She seeks out her animal friends,
She delights in the feel of their fur,
She gazes steadily into their eyes, sharing a secret with them,
But she can not share it with me.
My daughter is a mystery,
She is the Light of Christ in my life,
She reminds me that I am called to serve, to care for the imprisoned of the mind, the people with no voice,
She forces me to be humbled and to rely on the Lord, only
She is indeed the mystery of my life.
When one day we are together with the Lord, she will reveal her mystery,
She will speak freely, sharing our love for the Lord and our love for each other.
For now, she is my daughter,
A mystery
And a blessing.
By Karen Jackson
Mom to Samantha, 10 yrs. old, with autism
Nov. 2007
Copyright 2008
Karen, what a beautiful poem, thank you so much for sharing it!
I agree with Ellen. What a beautiful poem.
Jolene
The poem and the blog certainly shows people the struggle families go through to share the joys of life. What wonderful parents you are, how fortunate your children are. Communication of any kind is a wonderful way to share with each other.
Susan, I totally agree.
Jolene
Hello, I am a high school student doing a research paper trying to answer the question, “What is the best way for parents/siblings/teachers to improve a down syndrome child’s communication skills?” I’ve so far read from other websites that encouragement is key. Reading this blog really helped me realize the amount of improvement a child goes through each day. Could anyone help me to find other blogs just as helpful as this one?
Dear Savannah,
I’m glad this post was helpful to you. You might want to check out Ellen Stumbo’s blog about Down syndrome at http://elliestumbo.blogspot.com/. Shes the author of the post you found helpful, and you might find more at her blog. Also, check out Gillian Marchenko’s blog at http://www.gillianmarchenko.com/blog/. She also writes about parenting children with Down syndrome. Leave a comment at their websites about your project, and they might respond with more ideas.
Best wishes!
Jolene
Thanks so much for the other sources! I’ve learned so much. With your help, my project was a success! If you have anymore blogs or articles you didn’t mention before, feel free to let me know.
Thanks for the update, Savannah, and congratulations on the successful project. If you run across other good resources, please let DifferentDream.com know, too.