The Journey of a Mother Raising a Son with Special Needs
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It wasn’t until the third ultrasound of Roberta’s pregnancy that she and her husband Steve got the news… you’re going to have twins. They were born a week later, six weeks before they were due.
Alone in the hospital after the twins’ arrival and still reeling from the discovery that there were two babies instead of one, Roberta heard a question that would change the course of life for her whole family. A doctor came to the doorway of her room. Without approaching the bed, he asked:
“Do you know what Down syndrome is?”
Roberta’s twin sons received a one-of-a-kind diagnosis: as identical twins, they first developed as one baby—with the 47th chromosome that causes Down syndrome. But when they split, one child, Todd, retained the 47th chromosome while his brother, Jay, did not. No other case like theirs had been seen before.
Roberta and Steve faced an overwhelming new reality. They heard about the challenges Todd’s disability would bring: possible gastro-intestinal and heart issues, intellectual disability, and more. But amid the waterfall of information, unexpected questions flooded Roberta’s mind.
“I asked, ‘Will Todd go to the prom? Will he ever know the intimacy of playing footsie with a spouse in bed?’… I realized there’s something about that intimacy that I really wanted for him… he needs to feel welcome and belong as part of a community,” says Roberta.
A Family with a Mission (and a Mission Statement!)
Uniting as a team and entrusting their children to God, Roberta and her husband brought Todd and Jay home, loved them, and set out to become advocates for their sons. Facing life with disability, Roberta and Steve crafted a mission statement as parents:
“Our mission was to raise our three sons to one day look themselves in the mirror and say, ‘I am beautifully and wonderfully made in the image of my Creator—and I’m exactly who I’m supposed to be.’”
This mission set the foundation for the family’s understanding of Todd’s 47th chromosome, not as an accident or anomaly but as part of God’s master artisanship and creativity. This clarity also set the trajectory for Roberta’s confidence as an advocate.
When the twins reached elementary school, Roberta got advice to “look sharp and always bring baked goods.” So she showed up to Todd’s first IEP meeting wearing a power suit and carrying a tray of brownies. (Todd, now in his thirties, gets a kick out of this story.)
Equipped with a vision for Todd to find inclusion, Roberta convinced administrators to allow him to attend general-education classes at their neighborhood school where his brothers went. This experience set a trajectory for Roberta and Steve’s advocacy, which has evolved over decades to include preparing their children to advocate for themselves.
Raising Self-Advocates
Todd knows his value, embraces new things (even when they make him nervous), and has learned to use his voice effectively, even when clarity of speech can be a struggle. Roberta has encouraged him to create a one-page “strength-based tool,” which summarizes his likes and dislikes, and things that work (and don’t work) for him. For instance:
Todd’s likes:
- Christian music, especially by Jeremy Camp
- Watching YouTube videos
- Serving at the food pantry (as long as he doesn’t have to touch any rotted onions)
- Starbucks strawberry Frappuccinos
…and his dislikes:
- Using the word “favorite”
- Whipped cream (disgusting!)
- Squishy rotted onions, of course!
Ways you can support Todd:
- Clarifying his words if you can’t understand what he’s saying (and feel free to ask for the first letter of the word in case that helps!)
… and ways you can make his life harder:
- Speaking to him like a child or assuming he can’t speak for himself
Presumption of Competence
Roberta shares that “presumption of confidence” has been an effective principle at home and in public, a practice of modeling to Todd and others that she believes he can speak for himself. For instance, in a restaurant Roberta makes the point to wait staff that Todd knows exactly what he wants to order and will articulate it. And when Todd gets nervous before starting a new job, Roberta reassures him that nerves are a sure sign that he’s leaning into growth.
How to Support Families—and How to Receive Support
Roberta encourages church communities to support families in specific ways—and, in turn, for families navigating disability to embrace support!
To church and community members, Roberta says:
“Ask the family, ‘What do you need? Do you need your laundry done? You need a tank of gas? You need a pizza? What do you need? How can we be here and love on you?’ And take every advantage of it.”
And to families coping with a new diagnosis or long-term challenges:
“Open the doors, open your arms. Let people in. Don’t feel like you have to isolate yourself. And if you are feeling embarrassed or awkward in your new real-lived experience, give that to the Lord and, and let people love on you.”
Counting it all Joy
A seasoned advocate and faithful Christ-follower, Roberta has witnessed the power of God at work. Thinking of every special needs parent she has met, head hung, shoulders slumped, lacking a vision for their child… and the difference when they realize their son or daughter is beautifully and wonderfully made by God, Roberta counts all the challenges she and her family have faced “a joy.”
“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”
James 1:2–4
A Final Word
Roberta and Todd share a final word of wisdom today for every person beginning a journey with disability:
“I think one thing I would add to anyone out there just beginning your journey with disability… maybe you’re a mom that’s just gotten a diagnosis… Todd really spoke some wisdom to us when he shared how important it is to trust in God. And so no matter what journey you’re on, on behalf of Todd and I just want to let you know that God’s got you.”
Roberta
“Don’t be scared. Trust God. He’ll go through it with you.”
Todd
Todd’s One Page Profile
If you’d like to create a profile like Todd’s as a tool for yourself or a loved one with a disability, download this example!
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