When Casey was diagnosed with Down syndrome, the doctor's tone was cautious—like Casey's future was something to fear. But I've learned that a Down syndrome diagnosis isn't something to be afraid of—it's something to celebrate. It's the start of a journey that's filled with love, growth, and possibility. Casey is an active part of our community and a cherished member of our family. If I could go back knowing what I know now, this is what I would tell myself:
1. Your child will bring joy and purpose
Your child is more like other children than different. While the diagnosis may feel overwhelming at first, your child is bound to bring immense love, joy, and meaning to your life in ways you never expected. You’ll find times when your heart might burst with pride and in hindsight realize that these might have been something most people would normally take for granted. First words, first steps, a hit in t-ball, letting go of his hand on the first day of school—these milestones all take on a special meaning.
2. All children are different
They will grow, learn, laugh and love differently. And that’s normal. Let them define their own success and develop at their own pace. Avoid comparing them to others and celebrate their unique milestones—big or small.
Casey has many friends with Down syndrome, and each one of them is unique. One is an amazing photographer, another is a huge Elvis Presley fan, another can tell you the nickname of every college in the U.S., and Casey knows more about music than most people I know.
3. The right support system is everything
Connecting with other parents, advocacy groups, and professionals will help you navigate challenges and celebrate victories. You’re not alone in this journey. Having a support system will be invaluable to your mental health.
If you don't have one or don't know where to start, you can book a call with me on Fello. I'd love to share what I've learned and help support you and your family.
Talk to someone who's been there.
Book a session with Brianna to chat about being diagnosed with ADHD
4. Don’t lower your expectations of them
Don’t make excuses for them or allow them to make excuses. Expect them to do the things their siblings and peers do. They may achieve milestones at a different pace, but don’t assume your child can’t work, do chores, play sports, date, attend college and more.
Casey graduated college, has had a job for the last ten years (that he walks to independently), is the point guard on his Special Olympics basketball team, works out with a personal trainer, and does all his chores around the house without complaint!
5. Early intervention is powerful
Speech, occupational, and physical therapies can make a huge difference in development. The sooner you start, the better the long-term outcomes.
6. Routine care goes along way
While children with Down syndrome may have certain medical concerns (e.g., heart defects, low muscle tone, thyroid issues), regular checkups and a proactive approach to healthcare make these manageable.
7. Save and cherish the amazing moments
There are so many times I wish I had written down special memories, things that my son said or did. When all three of our boys were younger, we used to say a dinner prayer and Casey would add his own prayer after. I often think I could’ve written a book of those prayers—his thoughts were always so surprising, in the best way—insightful, inspiring, and moving. He always seems to know the right thing to say.
I've learned so much from being Casey's dad. I would love to share more of these learned lessons with other parents. Whether it's navigating early intervention, deciding on schooling, or supporting your child in adulthood, I've been there and am here to support you on Fello.
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