This blog is titled “Team Kendall” in honor of all of those who have volunteered to be a member of our team. We use this term often to recognize people who have shown love and acceptance to our family–relatives, friends, caregivers, and educators. The reality is, though, that we honor the members of this team because the sign-up sheet is mostly empty. It’s not easy. I can wax poetic about all of the reasons that it is rewarding, but at the end of it all, those who engage know what they are getting themselves into and make a conscious decision to come on board.
It’s amazing to love and be loved by our girl. She is all in, physically and emotionally. She is notorious for her hugs, wrapping her entire being around the recipient. And if you are part of her community, she will talk and ask about you on an endless loop.
Here’s the thing. While there are so many who claim membership on this team, Tom and I are the only members required on the field. So often we hear the question, “How do you do it?” The very honest answer is “Because we have to.” And this is proven true by the evidence that so many are able to opt out.
We are continuously grateful for all those who show up. You appear at our door, you text, you call, you ask how we’re doing. All of these efforts are equally important, and we legitimately don’t have expectations for most people to come to our home and apply disability behavior management techniques.
But…
We have been finding ourselves more and more lonely in the day-to-day care responsibilities. We really can’t pay anyone enough to do this well. We cannot find an agency willing to be accountable. We are continually left to scramble and realign our careers and relationship in order to meet her care needs. The vast majority of special needs families live on one income, and we are being forced to recognize why.
Why?
No one else has to. Everyone else is able to opt in or out. I can’t imagine the freedom to be able to decide “I need to rest more, attend to other things, breathe.” The only time Tom and I have any choice is the rare occasion when someone else is taking responsibility for Kendall’s care, and like I said…no one else has to.
Most parents are able to rely on institutions to care for their children: child care centers, public institutions, after school programs, and summer camps. The service is provided at a cost to the parents and is reliable to the extent that you are not dependent on an individual’s empirical commitment to your child and family. But what if your child’s needs are abnormal? Difficult? Just plain messy? Well, screw you.
We’ve been very lucky to have caregivers who have loved and cared for Kendall and our family, but that is never going to be a guarantee. Any caregiver we enlist is at liberty to decide that they no longer wish to engage. The difference is…we have to, and because of this obligation, we are constantly surprised by those who are opting out. And the number of those who are willing to commit…well, we’re currently in the negative.
“I’m busy.”
“It’s too hard.”
“I can’t cope with this anymore.”
Imagine hearing those statements regarding the care of your child, about the time spent to rejuvenate yourself for a couple of hours, about the care that you provide to your child every day.
We have to. So we do. Because she deserves it. And others would be blessed to participate, but so few are willing to see the proof in that promise.
Team Kendall 