Years ago, when I traveled frequently for my job, I carried a portable Garmin device. Prior to using one’s cell phone for mapping a route, this was the best alternative, as many cars did not come with navigation systems. However, sometimes even the best alternative isn’t very good at all. In Colorado Springs, I couldn’t get an adequate signal for the Garmin, so I had to simply guess where the Focus on the Family headquarters might be located. (And I found it!) In Atlanta, while attempting to access an interstate highway, my not-so-trusty Garmin led me to a dead-end road in a run-down neighborhood. When I looked up, there was the interstate. Overhead. Yet I had no idea how to get onto it!
The Paradigm Shift
Parenting adults with intellectual and developmental disabilities (IDD) can be a lot like driving with a “that’s-so-2000’s” Garmin. The best information we have ultimately feels utterly inadequate. When our son Tim graduated from high school, it was a wonderful and memorable occasion! We laughed, we cried, we celebrated! There were so many people to be thankful for, so many accomplishments achieved, so much growth that had been obtained. It truly was a great moment.
Soon thereafter, however, I was struck with this foreboding thought: “Now that school is over, do I have to take a deep breath and do this all over again for the adult phase of life?” I was now 21 years older. I was now 21 years more tired. I was 21 years experienced, but in the education system—not the adult service system.
Life-beyond-high-school, for families with adult children with IDD, can feel a lot like “same old, same old.” There can be a realization that this is not actually a launching into the world, but simply a mega-re-boot of a whole new phase of goals to establish, a new set of resources to learn, a new set of players to acquire and to work with, and that—in most states—it is abysmally disorganized and disconnected.
All of the initiative shifts to the family at this point. All of it. This is a significant paradigm shift for families. The relatively smoothly paved road of the education system (along with all of its guardrails) abruptly ends. And, in its place, there is not even a poorly paved path—but alas, no path at all. The road stops. The crest of a grassy hill rises in front of you. You climb up the hill, hoping the road picks up again on the other side—only to find the piles of boards to construct a wooden-planked pathway, heaped on the side of the road, with countless other families milling around aimlessly. Looking for direction. Looking for purpose. Looking for help.
Guidance in Genesis
With that sober (and somewhat discouraging) assessment in mind, let’s remember that—true to form—God’s Word does give us both the guidance and the framework we need to do “Part 2.” Even better, God himself will give us the “second wind” we need to accomplish the “second half.” When I find myself needing to start over, I often land in Genesis 1. And what I was encouraged to find there was guidance that reminded me of several things.
Every one of us—including our adult children with IDD—are:
Created by God, on purpose. We don’t exist by accident.
Created by God, for a purpose. Contrary to popular thought, not everyone can do anything they set their minds to! We are wired in certain ways and are to strive to be all that we were created to be.
Designed as relational beings. We don’t do well alone.
People who have natural gifts and abilities. Sometimes those gifts are packaged uniquely. This means we can miss them, or worse, dis-miss them.
Deeply fulfilled when we embody godly-character-driven, interdependent living in a flourishing environment.*
Based on these statements above, as a reading of Genesis 1, then we can surmise that God created human beings to live in community with him, with each other, and with the environment in ways that reflect God’s character into the world. So how do we do that in practice?
Focusing on a Framework for Flourishing
To live out the guidance in Genesis 1, we need to formulate a framework for functioning in the world. Again, I see these practical elements in Genesis 1. In order to flourish in the world (in relationship with God, others, and nature) we need to have:
Access to relationships in life. We can’t flourish in relationships we don’t have.
Agency in life. The ability to act in a way that engages the world around us.
Meaningful work. We are designed to use the gifts we have to uniquely engage the world—whoever we are, and wherever we are.
Freedom of movement. In order to do the first three, we also need some access to navigating the world,
For people with IDD, the framework of life does not naturally nor easily fall into these categories. Instead, it can often look like this:
Isolation. Insufficient access to relationships.
Uncertainty and limitations. Not the ability to act, but the inability to act due to lack of information or lack of supports.
Inability to work. This can arise from lack of access to work (the person cannot get an interview or cannot get hired), lack of accommodations for work, or lack of mobility to be transported to work.
Restricted movement. This can arise from inability to drive, living in a rural area with very limited options for public transportation, inability to acquire a caregiver, or inability to acquire an accessible van, etc.
So how do we focus on a framework for flourishing instead?
If possible, I encourage you to recruit a small team of family and friends whom your adult child with IDD participates in choosing. A “Circle of Support” can take the weight of creative brainstorming off of your shoulders, broaden the input of other adult voices into your son/daughter’s life, and spark innovation. On a periodic basis, simply gather around the table together (or over Zoom if that is easier) and begin a conversation.
Start by reviewing your adult child’s strengths. (Remember: Everyone does better in life when their life is built upon their strengths, not their deficits!) My engineering husband could teach me auto mechanics “till the cows come home” but I can pretty much assure you that you will never want me to repair your car engine, no matter how many courses he guides me through. That’s because my strengths do not reside in that arena (or anything close to it)! My kids used to celebrate when I was able to install batteries in a lightsaber.
Next, realize potential for growth by talking through each of the four elements of a framework for flourishing: Access to Relationships, Agency in Life, Meaningful Work, and Freedom of Movement.
Reach for an area of growth in each category. Meet again at a designated time and rejoice in the progress and repeat the process. Recruit. Review. Realize. Reach. Rejoice. Repeat.
Access to Relationships
In realizing potential for growth in access to relationships, consider asking yourselves the following:
“What does (name of person with IDD) need so that they can spend time with:
1) those whose company they enjoy,
2) those they’d like to learn from,
3) those who can help them grow in their faith, and
4) those they would like to help or serve?”
For our son Tim, one way his access to relationships has improved has been by dating a young woman who also has Down syndrome. They delight in each other! They genuinely mutually encourage each other to learn new things, and to grow in their faith, and to help and serve others. It is beautiful to behold.
Agency in Life
In realizing potential for growth in agency in life, consider asking yourselves the following:
“What does (name of person with IDD) need so that they can exercise agency by having plans, goals, and dreams related to things they would like to:
1) enjoy their life,
2) learn new things,
3) grow in their faith,
4) help or serve others
. . . AND the ability to act on those plans, goals, or dreams?”
Otherwise, without the ability to act on plans, goals, or dreams (as I have heard it stated): “Life is always dress rehearsal and never opening night.” Let’s change that!
For our son Tim, he has increased his agency in life by learning photography. Using money he obtained from his meaningful work (see below) he purchased a used SLR camera and is taking stunning photographs. He immensely enjoys being outside taking pictures of nature, he continues to learn how to use lighting and focusing techniques, his love of nature has buoyed his already huge love for God, and he made Christmas gifts out of his photographs last year.
Meaningful Work
In realizing potential for growth in meaningful work, consider asking yourselves the following:
“What does (name of person with IDD) need so that they can:
1) obtain regular work that is meaningful to them,
2) make their own unique contribution to the world consistent with their values, and
3) learn new skills and try new jobs over time?”
Sometimes, we can become so glad that our family member actually has employment that we can forget that they may not like it anymore! Everyone needs the opportunity to learn and to grow and to change. That includes the arena of meaningful work—whether it is volunteer work or paid employment.
For Tim, several months ago his place of employment (after almost 11 years) suddenly burned to the ground. The grocery store caught on fire and was a total loss. This generated a significant time of grieving for Tim, and also a significant inflection point for us as a family. When Tim was ready for the conversation, we asked him (over time): What would you like to do if you could do anything for work? Would you still like to work at a grocery store or not? Why or why not? If you work at a grocery store again, are you interested in the same position or something different? Do you want to work the same type of hours, or would you prefer something different? We’re so thankful that God provided Tim with a wonderful new job, with better pay, no weekends, close to home, and where he is already deeply appreciated by the customers and staff.
Freedom of Movement
Finally, in realizing potential for growth in freedom of movement, consider asking yourselves the following:
“What does (name of person with IDD) need so that they can:
1) enjoy access to good relationships,
2) act on their plans, goals, and dreams, and
3) engage in the work (paid or unpaid) that their values and strengths call forth from them?”
Freedom of movement is so much broader than just “transportation.” Yes, it involves getting to a place. It also involves getting into a space (physical and relational). And it ultimately involves experiencing belonging in that place and space with the other people who are also there.
For our son Tim, he has increased his capacity for freedom of movement by learning to access Uber. This has benefited both Tim and our family as he enjoys the independence of ordering his own ride and we have less driving to do. That said, yes, there have been a few hair-raising mistakes made along the way, but that’s a story for another day. What is important is that Tim continues to learn from those mistakes and has actually exercised some amazing problem-solving skills “on the fly” (or, maybe “on the Uber’). If we don’t allow for any risk taking, we won’t allow for much growth since meaningful risk is generally required to foster meaningful growth.
In Conclusion…
So, yes, parenting adults with IDD can be a lot like driving with a “that’s-so-2000’s” Garmin. The best information we have ultimately feels utterly inadequate. But thanks be to God, that he doesn’t leave us alone without guidance or a framework to follow.
Genesis 1 reminds us that we are all created on purpose, for a purpose, and designed as relational beings with God-given gifts and abilities. When we live our lives reflecting God’s character into the world, (in relationship with God, others and nature), within supportive environments, we truly can flourish.
The framework for that flourishing fosters access to relationships, agency in life, meaningful work, and freedom of movement.
Won’t you consider recruiting a small group of like-minded friends that your adult child participates in choosing so that you can: review his/her strengths, realize potential for growth, reach for an area of growth in each category listed above, and rejoice in the outcome? Then repeat.
Finally, I encourage you to do so with a positive sense of expectancy that God, in his goodness, will provide a way, once again. It is what he does. He is a Way-Maker. He did this centrally for us in the saving work of Christ, and he will continue to do so with the details of the lives of those who seek after him. He is not limited by a “that’s-so-2000’s” Garmin—or anything else, for that matter. His goodness doesn’t require us take a deep breath for “Part 2,” instead, it allows us to exhale a huge sigh of relief. Won’t you join me?
In addition to Parenting & Disabilities, Steph Hubach is the author of Same Lake, Different Boat: Coming Alongside People Touched by Disability—First Edition (2006), Updated and Revised Version (2020). In collaboration with Lancaster Bible College, Steph produced a Christian Education DVD series based on Same Lake, Different Boat, which is available on YouTube. She has served as a contributing author for the Ministry Essentials Bible, The Dignity and Sanctity of Every Human Life, and Amazing Gifts: Stories of Faith Disability and Inclusion. Steph’s writing has appeared in publications such as ByFaith magazine, Focus on the Family magazine, Covenant magazine, Breakpoint online magazine, and the enCourage blog. Steph currently serves as a Research Fellow in Disability Ministries and as a Visiting Instructor in Educational Ministries with Covenant Theological Seminary.
