Written by: Phillip C. Clark, Founder and President, ENABLE Special Needs Planning
We had the best intentions…
Our family had the best intentions. We strived to create a great future for my younger sister, Sarah, who has Down syndrome, no matter what future events would transpire. For weeks, we endured many hours of emotional conversations. We thoroughly hashed out all of the precise details of our plan. We thought through every pitfall, evaluated every potential problem, and developed strategies to overcome such obstacles so that Sarah could live a purposeful, impactful life.
But we forgot one essential part of the planning process…
We didn’t include Sarah, the person we were preparing for, in any of our planning conversations!
This mistake wasn’t immediately apparent to us. In fact, it wasn’t until few years after we finalized all of our planning decisions, that we realized our mistake.
“When mom and dad die, what’s going to happen to me?”
One Sunday afternoon after church, my family got together for a casual lunch at my parents’ house. Per usual, our conversations were scattered all over the place. Sports, vacation plans, work schedules, events in the news…
While my wife, sisters, and mom stood around the kitchen island chatted about something, Dad and I sat at the kitchen table and began talking about the state of the American economy and how it was affecting his retirement accounts, that I managed.
Out of nowhere, my sister Sarah brought both conversations to an abrupt pause, as she quietly interjected: “I have a question…”
And then without waiting for a response from us, continued: “When mom and dad die, what’s going to happen to me?”
Wow. That certainly wasn’t the question any of us would’ve expected to pop out of her mouth that sunny, Sunday afternoon.
After a brief moment of paralyzing surprise, my mom rushed over to Sarah, wrapped her arms around her, and said: “Sweetie, if something were to happen to us, you would have many options. If you wanted to live with Phillip and Chelsea, you could do that. If you wanted to live with Grace, that would be fine, too. But just know that, no matter what happens, you will be loved and cared for. We have a plan to make sure you are ok.”
Sarah took a moment to process that information. And then, with a sense of relief, but also with tears welling up in her eyes, she said, “Good… because it’s been heavy on my heart for a long time.”
We thought we had planned for everything…
We thought we had planned for everything. But we didn’t let the person at the center of our planning process know that she was well-planned for. We forgot to provide Sarah with a sense of security, knowing that no matter might happen in the future, she would be loved and cared for.
As the only “kid” still living at home with mom and dad, how many nights had she lay awake in bed wondering what would happen to her, if something happened to them?
One of the most important parts of the special needs planning process is to create peace of mind from knowing that the future is well planned for. We failed to provide my sister with that sense of security.
Learn from our mistakes!
Have you talked with your loved one about the future? Do they have peace of mind knowing that their life is well planned for? Do they have any questions or worries about their future? If you haven’t yet explicitly discussed your planning decisions with them, my guess is that they do. All it takes is a conversation to ease their heart and allow their mind to rest.
Plan now!
If your family hasn’t begun to plan for the future and you’re unsure what would happen to your son or daughter if something happened to you, we’d love to help you with your special needs planning journey! Our team will meet you where you are and help you get to a place where you feel confident and secure, knowing that your loved one with special needs is well planned for and prepared to live an abundant, impactful life – the GREAT life you’ve always imagined for him or her.
If you have questions:
Schedule a call with me: https://calendly.com/enablesnp/30-minute-call OR email our team at: info@ENABLEsnp.com.
We’d love to learn about your family and determine how ENABLE may be able to serve you!
Thanks for sharing your story. I wonder though if Sarah would like to have been included in the planning conversations not only to be reassured of her future, but that she also might have her own ideas about her future. Maybe she would rather not live with one of her siblings.