The Tightrope Life of Special Needs: Bethany’s Next Chapter
A Quick Disclaimer: Every child is unique, and that is even more true when raising a child with special needs. As our sweet Bethany prepares to turn 26, I am going to paint with very broad strokes to share the specific season we are walking through with her. Every family's experience and decisions will look entirely different. Yet, if there is one thing we all agree on, it is this: we love our exceptional children with a fierce, unwavering love, and we are determined to wade through the chaff to find the best individual choices for our unique kids.
Shout out to Roman Kraft for giving us the coffee vibe pic for ambiance ❤️
How I wish we could sit down over a cup of coffee to share our dreams, our fears, and our ideas. In fact, one of the greatest blessings in my life is having two wonderful friends whose daughters also have Down syndrome. We meet regularly for coffee, deep laughs, and sometimes misty eyes, encouraging one another as we navigate through this unique adult season.
Find a Friend Who’s Walking a Similar Journey
I have many friends whom I love and who support and adore Bethany to pieces. But few people, can fully fathom the constant tension and balancing act of sojourning in the Adult Land of Special Needs unless they are walking it themselves. Having friends who are in that exact same trenches with you... that is a rare and beautiful lifeline."
Entering into adulthood changes the entire landscape. In many places, official services end when a child turns 21. Suddenly, as the parent, you are left trying to navigate a whole new world: finding a job they will thrive in, helping them manage money and self-care, and providing social opportunities—which become much harder to come by as they get older.
Realizing this gap, three years ago we decided to start a social group that meets two Fridays a month. We organize bowling parties, meetups at the movies, but everyone's absolute favorite is when we gather at our house for food and game night. We started with just seven people, and today we have about thirteen young adults ranging from age 23 to 30! This consistent community has become absolutely invaluable, not just for the young adults, but for the parents who need to know their children are truly belonging.
Dreams, Desires, and Realities
Honestly, I don't know where we would be without the incredible family support we have. Her siblings, her "in-loves," and her nieces and nephews show her such consistent love, respect, and ongoing support. Our entire extended family has surrounded Bethany, giving her a beautiful, lifelong foundation of love and affirmation.
I could write a book about our love for Bethany and the gift she’s given our family- she’s made us stronger— better. Excitement is ramping up in our family as she’s getting ready to represent Kansas this July as Kansas Miss Amazing, Miss Division! We go to Chicago to compete in the Nationals this July. (More details and pics will be coming, you can be sure. 😉)
Parents to Bethany- Representative of Kansas Miss Amazing- Miss Division- 2025-2026
Every parent wants their adult children to flourish. But special needs change everything! For Bethany, the finish line is different.
We want so much more for her than just existing; we want her to achieve her dreams. When she was 19, after two long years of hard work, she passed her driver's test and got her license! It came with a necessary restriction that an adult must always drive with her, but what a success! Yet, on the other hand, she frequently laments that she can’t drive entirely by herself or have her own car. Another deep desire of her heart is that she wants to get married so badly.
All of these dreams are beautiful and good, but the reality is that they often come with unexpected limitations, surprises, and deep disappointments when they don't materialize when or how she thinks they should. Honestly, as a mom, I had no idea how challenging it would be to find a young man who could become a true boyfriend for her. (Seriously-private message me if you know a cute Christian guy in KS! 😉)
Balancing her very real adult desires against her actual safety and the realities of the world is a daily act of grace. It requires us to constantly pivot between giving her wings to fly and keeping her safely anchored.
Because the truth is, you never truly "graduate" from active parenting when their needs remain great throughout their life. Underneath it all is a constant ache as a parent. We want Bethany to know romantic love, to be loved in return, and to experience the things that "typical" people so easily take for granted. My purpose as a mom hasn't faded; it has simply evolved into a lifelong devotion to help her find joy in her journey; a sense of belonging and fulfillment and purposeful connections.
The Autonomy Illusion
We love Bethany’s drive and confidence, but the reality is that she wants total independence without fully understanding her limitations. We face a constant tug-of-war: we want to treat her with the utmost respect as an adult, but we know she requires lifelong, family-centered guardianship.
Unfortunately, institutional systems often push a version of "self-determination" that complicates this. By teaching special needs kids that government-funded group homes are the ultimate goal, it can foster an illusion of total autonomy that ignores reality.While this may work for many, it pushes the family to the sidelines instead of letting the people who love her most design a safe, fulfilling life within our own walls. Balancing her desires against her actual safety is a daily act of grace.
The Wisdom Checklist: Four Practical Takeaways
Credit to Gemini- I couldn’t resist having a pic created of me walking over a canyon 😁
This tightrope walk requires a constant balance of love and wisdom. If you’re navigating these same waters, here are the simple principles Jeff and I practice:
1. Go to the Source First
"If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault..." — James 1:5
Do this first—before you seek out secular opinions or system-driven advice. God chose you to parent your child for a reason, and you know their heart better than any institutional checklist ever could. (It also helps that Bethany loves Jesus and wants to follow His plans for her life.)
Bethany loves reading her Bible, listening to Christian Music, and going to Bible Study.
2. Build a Trusted Circle
"Where there is no guidance, a people falls, but in an abundance of counselors there is safety." — Proverbs 11:14
Seek out wise, trusted counselors who understand your values and your child's unique needs. Surround yourself with people who want to help your family thrive, not just check a box.
3. Create Safe, Compact Spaces for Honest Conversation
Take intentional, short moments to have open communication with your adult child. When we sit down with Bethany, we do our best to simply listen to her heart without reacting. Our goal is to hear the true cry beneath her words. From there, we try to sift through her desires together—helping her move toward the dreams that are possible, while gently explaining when something is unrealistic or unattainable. As a mom, these talks are sometimes completely heartbreaking, but they are absolutely necessary.
4. Circle Back to the Big Picture
We always bring the focus back to God’s timing. We remind Bethany of her life verse: "For I know the plans I have for you..." (Jeremiah 29:11).
We encourage her to practice active patience—telling her, "Your dreams might take some time to unfold, but let's seize today so you don't miss the joy of this exact moment."
We help her look around at her beautiful reality: a family who adores her, great friends, a part-time job, wonderful skills, a church family where she can serve, and her social groups. Then, we always wrap up our time by holding hands and praying together.
A line from a song played at our wedding all those years ago constantly reminds me: “I don’t know what tomorrow holds, but I know Who holds tomorrow.”
As Jeff and I move forward, we have chosen to make future plans for Bethany that are comprehensive but open to changes that would benefit her. Our daily hope is simply to help her increase her living skills and achieve her deepest dreams, carefully balancing her desires against the need to protect her from the very real dangers of a predatory world where her sweet innocence could easily be exploited.
Through it all, we rejoice knowing we are not in this alone. Jesus is the Good Shepherd, and we are the sheep of His pasture. We are simply trying to follow Him day by day, trusting with all our hearts that He will help us see exactly which path is best for our precious Bethany.