Communication with My Daughter Who Has Down Syndrome

by Ellen StumboOct 16, 2012Advocacy, Special Needs Parenting11 comments

Communication with children who have special needs requires creativity. Ellen Stumbo shares her dreams of talking with her daughter with 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:
Communication with My Daughter Who Has Down Syndrome

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 impatient 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. 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. 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.

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By Ellen Stumbo

Ellen Stumbo is a writer and speaker and the mother of three girls, two with disabilities. To read more of Ellen’s writing, visit her blog at www.EllenStumbo.com. She can also be found on Twitter and Facebook.

11 Comments

Jolene on January 27, 2014 at 10:20 am

Thank you for sharing your children with us. And thank you for all you do for them. They are blessed to have you as their mom.

Jolene
Brenda on January 24, 2014 at 11:20 am

Hi I am a mother of 3 beautiful Down syndrome children. 2 I adopted and one a foster child I have had since he was 3. He is now 38 the other 2 girls — 28 years old and 32 years old and they are the greatest gift. Never having children of my own I am so thankful to their birth parents for giving me the joy and the abundance of love that these 3 treasures have shared with me.

2 of them talk the boy who is autistic as well as Downs only uses his speech, 2 words only at a time if at all. By the age of 12 he stopped all together for many years and only in the past 6 months has he started again. 1 girl was retested at 6 months because they didn’t think she was Downs because she was saying, “No don’t” and “Get out” at 6 months. They could not believe.

The other girl was the boss of the 3. Had every thing to say but it took us 6 years to work out that Missmuss was breakfast and not Christmas. Yet the kids seemed to know what she was talking about. Then I decided I would teach her words by sight and by using the sign language book we would pick a word and she would search the sign book. Even though she did the signs as she learned the word she became clearer in speech and didn’t carry on the sign. But became a great reader. She loves novels especially the ones related to movies she likes. She is reading Lord of the Rings and The Hobbit at the moment. I would also write the word in red felt tip pen as it is easier to read and place it on the fridge at eye height and would say that word says dog and sign it every time we were around it and some times I would put 2 words up and just ask where is the dog? She was 2 when we started doing that.

But it is never to late to learn anything.Gee I’m 62 and I am still learning. And it is the three special angels that are teaching me. For they have the one thing that we may never achieve and that is pure humility. A Down syndrome child can learn as much as we have the patience to teach them. Only special people are given special children to love them all that much ….For as much as our hearts may ache and what ever trials they seem to have they still love all and there is that smile or grin. The child that is autistic may not show emotion the way that we feel we need. They still know who family is. They are pure love and we have to learn the lesson. We have to learn to love them more and be more loving to others around us. They have the pure innocence of a little child all of their life and they surely have front row seats in heaven as they are here to try us not to be tried themselves. They are here to love and to be loved. And we are the lucky ones because they are ours.
Jolene on December 10, 2012 at 11:25 am

Thanks for the update, Savannah, and congratulations on the successful project. If you run across other good resources, please let DifferentDream.com know, too.
Savannah on December 9, 2012 at 6:28 pm

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.
Jolene on November 19, 2012 at 1:52 pm

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
Savannah on November 18, 2012 at 5:29 pm

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?
Jolene on October 22, 2012 at 7:17 pm

Susan, I totally agree.

Jolene
Susan on October 22, 2012 at 12:50 pm

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.
Jolene on October 16, 2012 at 8:22 pm

I agree with Ellen. What a beautiful poem.

Jolene
Ellen Stumbo on October 16, 2012 at 8:20 pm

Karen, what a beautiful poem, thank you so much for sharing it!
Karen Jackson on October 16, 2012 at 8:02 pm

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

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