“His Life Is Definitely Not a Struggle.” A Mother of a Child with Down Syndrome Shares Her Story

The following is an interview I had with Valle Dwight. Valle was a reader who sent me a private message correcting my terminology in a previous blog about mental retardation. I agreed with her concerns and removed my blog. Valle was so insightful and positive that I wanted to give her the opportunity to share her story. I continue to be impressed by her and am sure you will enjoy reading this interview.

1. Tell us a little about your family.

“My husband and I have been married for 16 years. We have two boys, 13 and 10. Our youngest son has Down syndrome.”

2. When did you first learn that your son had Down syndrome? What were your emotions like at that time? What were your fears?

“When Aidan was born I was immediately struck by his eyes. They just looked a little different to me. But he was big and healthy and screaming his head off, just like our older son had when he was born, so I dismissed my concerns. An hour or so later our midwife came in and told us that the nurse suspected that he might have “a chromosomal disorder.” I had no idea what she meant; my brain froze, but a chill went through me. “Down syndrome,” she clarified. I was scared, crushed, lost. I felt I’d been robbed. My fears were stupid — I wondered if he’d get a job. The baby was two hours old and I was worrying about his future employment!

I think we worried about a lot of things, but when you dig down, I think my biggest fear was that I wouldn’t be able to love him. And that’s a hard thing to admit.”

3. What kind of support did you receive from family and friends?

“Our families were great. They stood by us and they took that baby right in. No questions asked. They didn’t really know much about Down syndrome, either, so we were all just finding our way. I think our family and friends looked to us to lead the way on this.”

4. What were the most difficult challenges you faced during your son’s infancy and early childhood?

“I don’t think of his babyhood as being a challenge for us — I look at it as being this amazing period of growth. We learned about who we were as people; we learned to look beyond a diagnosis to really see the person there. We learned that we used to be quick to judge, and that the things we judged people on were really on-the-surface and stupid.”

5. What are your son’s greatest struggles today?

“I don’t think of Aidan in terms of struggles. Clearly some things are more difficult for him (reading, especially), but his life is definitely not a struggle. He greets each day with laughter; he doesn’t walk into a room — he makes an entrance; he notices everything, and is quick with a compliment; he cares deeply about his friends and family; he laughs loudly, loves to tell jokes, and never says harmful words to others.”

6. What education program is your son enrolled in? Are you happy with it?

“Aidan is in fourth grade at our neighborhood elementary school. He is mostly included with his class, but gets pulled out for reading help and speech therapy (his articulation is not the best).

This year we are very happy with his school. His teacher, aide, special ed teacher and others on the team are committed to him and his education and his inclusion. He is enjoying school and being a learner. It hasn’t always been this wonderful, so we are treasuring this year.

Being in school has not been easy for Aidan. Things move so quickly and everything they ask of him is sort of difficult. As a result, his behavior wasn’t always the best. He was the master of the sit-down strike. And when he decided to flop somewhere, there was no moving him. But this past year we’ve seen incredible growth and maturity and we’re so relieved. He’s loving school and he’s learning better ways to deal with things when he gets overwhelmed.”

7. What is the best thing about having a special needs child?

“I think having a child with a disability has changed my life, and all in good ways, so I feel very lucky. As I’ve mentioned before, the experience has added a texture to my life, has given it depth that I didn’t have (even though I thought I did).

It’s definitely made me more compassionate, tolerant, and accepting of other people. I value differences, and truly understand the benefits of having a society that is filled with different people living together respectfully.”

8. What message would you like to convey to society about people with Down syndrome?

“I would want people to look past the stereotypes and really, really see the people behind the diagnosis. These kids aren’t angels, they aren’t always lovable, they aren’t put here on earth to serve a higher purpose – they are just people, with all the feelings, sorrow, happiness, love, aspirations of other people.”

9. If you met a young mother of a newborn with Down syndrome, what advice or encouragement could you offer?

“First, I’d congratulate her on the birth of her beautiful baby. Too many people (well-meaning people) said, “I’m sorry” when they heard about my son. It’s pretty horrible to hear people say “I’m sorry” about the birth of your child.

Then I’d advise her to just love and treasure her baby, to forget those stereotypes and to get to know her baby. Try to think, “What would I do if this baby didn’t have Down syndrome?” and then do that with this baby.”

10. How is your son doing? What hopes do you have for his future?

“Aidan is doing great. He’s strong and tall and healthy. He has good friends and an absolute lust for life. He loves music and dancing. He is a complete ham – he was a hit at last year’s school talent show where he and a friend performed Soul Man, fedora and all.

He loves sports, basketball and soccer in particular. He’s pretty good at both. He loves to swim and his absolute favorite thing to do in the world is stay in hotels! We’ve been known to drive three miles away and spend the night in a hotel, just for the fun of it.”

Valle Dwight

Kristyn Crow is the author of this blog. Visit her website by clicking here. Some links on this blog may have been generated by outside sources are not necessarily endorsed by Kristyn Crow.

Related Articles:

What Causes Down Syndrome?

“Will You Marry Me?” A Special Kind of Love

“Why I Homeschool My Son With Asperger’s Syndrome.” One Mother’s Story

“I Knew Something Wasn’t Right.” A Mother Learns Her Daughter Has Familial Spastic Paraparesis