A little over a month ago, my daughter started high school. Regardless of all the fears, worries, and desires for time to slow down, it happened. She was ready. But she’s my first, and I wasn’t. As I got into the car after dropping her off at freshman orientation, the Fleetwood Mac song “Landslide” came on the radio.
“I’ve been afraid of changin’ ‘
Cause I built my life around you”
What? It felt like my heart stopped.
“But time makes you bolder
Even children get older
And I’m getting older, too.”
I thought there was a chance I might get a little misty-eyed as she got on the bus the first day, but that song and those lyrics got me first. Cue the tears.
Six words really hit me: “I built my life around you.”
I had never said it before, but it was true. I had built my life around my freshman and her two siblings. More accurately, I had built my life around her.
My daughter has Down syndrome and has battled a slew of health issues over the years -- born a preemie at just 29 weeks, she needed open heart surgery at three months old. She spent the first four-and-a-half months of her life in the hospital, and appointments with medical specialists became part of our routine, even still.
As parents, we can all relate to the idea that having kids changes things. When your child has a disability or ongoing health needs, life changes even more drastically. We make sacrifices; we change plans and routines. As parents of children with disabilities, it’s what we do; we build our life around our children.
Then one day, somehow they’re starting high school, and we’re faced with the reality that the life we need to start helping to build is is more “theirs” than “ours as a family.”
If you’re like me, questions about the future hit in the middle of the night. The five things I think about most:
1) Where will she live?
Will she be safe? Will she be able to take care of herself? Will there be safe and helpful neighbors? Will she feel like she is part of a community? Will she be able to access the things she needs?
We live in an exciting time, with more and more diverse options for our adult children with disabilities. Parents and like-minded individuals are developing communities for adults with disabilities that look different from some of the previous options. Cooperative communities have begun to sprout up throughout the country. Models exist where adults with disabilities live together in an entire apartment complex. Some models include adults with and without disabilities living in a community and interacting in non-traditional arrangements of support. I look forward to seeing what other models come into existence that give young adults of this generation increased lifestyle opportunities.
2) Where will she work?
Will she be able to find a job where she can use her unique skills? Will her boss be supportive and willing to work with and support any challenges she may face in completing her required tasks. Will her co-workers accept her? Will she be safe at work? What mode of transportation will she use to get to and from her place of employment?
3) Will she be able to be as independent as she would like to be?
We all want our children to be as independent as possible and to live up to their full potential. What goes into this illusive “independence?” Being empowered to make decisions regarding their life choices is the main component. Many factors exist that may preclude full independence as an adult, but having a say in available options is empowering. It’s our responsibility to empower our children with disabilities to have a say in the choices that affect their lives. “Person-centered planning” is a concept that is said to have started coming into existence as early as 1979. That means that 40 years ago people were just starting to think that it was a good idea to let adults with disabilities have a say in their lives. We have come so far!
4) What goes in to “quality of life” for my daughter?
A good place to start is asking our children what things they would like to have in place in their lives in order to be “happy.” Let’s also think about what we think about for our own quality of life or that of our other children: fulfillment, friendships and community, a sense of having a “place in this world,” having meaningful work, having access to a variety of leisure activities, as well as being able to access the goods and services she needs.
5) How do I fit in?
It is said that successful parents work themselves out of a job. This will likely look different for us with our adult children with disabilities. Most of us will find ourselves more involved in our children’s lives in ways that are different from that of their typical siblings. This will differ between family situations-- how much is by choice and how much is because of necessity?
I’m thankful that I have a few more years to think about these things. I’m also thankful for all of the parents of adults with disabilities who have gone before us, as well as the community of parents who are also thinking about these hard things. Here’s to these great kids we’ve had the privilege of parenting, and here’s to figuring it out together.
Sara MacGregor is the Program Director for Same As U.