Friday, February 25, 2011

Respite. Get it. Get it soon!

Recently, someone left a comment on my blog about a foundation that helps provide respite to parents of special needs children. This really resonated with my wife and I because we’ve been dreaming of doing something similar for parents.

We meet parents all of time who are burned out. We know it all too well ourselves. Yet, I’m very surprised there are very little community, state/national legislation or not-for-profits that  focus on family support for the sake of respite only.

Ok, there are a few options but only if your child is ‘disabled’ enough or ‘medically fragile’ enough, according to criteria set by insurance companies or legislators, which usually puts a limit on funding sources.

On one hand, I can understand why there are very little organizations that support  families but on the other, I‘m a bit confused.

For example, the person who runs the not-for-profit mentioned above also said that the toughest part of the job is getting parents to accept a grant from the organization. What? Parents really don’t know how to accept a gift that gives them reprieve?

I could understand this if parents couldn’t determine what they would do with their time, as that would take some adjusting to but to not accept it at all baffles me. We parents, at some point, must learn to let go a bit.

We need to understand that no one will ever provide the level of care that we can and that’s ok - no matter how medically fragile, disabled or emotional our children are. We need stop waiting around for the left foot to fall by living in crisis mode all of the time.

When we do this, we are jeopardizing way more than we realize, ranging from our relationship with our spouse to our own health. At some point, we need a break. Not only do we need a break from our children but also from each other as spouses.

When is the last time you took a break for you and only you? (yes, men, too!). Men and women are often stereotyped to handle crises differently but I don’t think that’s always true.  I think there are many similarities between sexes but we often never get or make the time to explore what they are.

I’m writing to advise you to do some research, to spend some of your savings, to find anyway possible to make respite for yourself, no matter what that may look like - only you know!  Start small by taking an hour here or there, getting your haircut, taking a walk, going to the museum, go bowling, whatever you like to do, perhaps even try something different. There’s simply no reason to try with just a few small steps at a time. 

We parents of special needs children are in this adventure for the long haul (meaning the rest of our adult lives) so get out, get away, get on with focusing on yourself with some respite. Get it.  Get it soon!

This post is dedicated to our youngest, Eliza, who turned one today. Happy birthday, sweet girl.

Tim Gort is a professional writer who writes about his personal challenges and triumphs of being a special needs father at the family’s bog The Gort Family.


  1. You're right, it's hard to accept the gift of time away. It's unfortunate that as parents of special needs children we feel even more guilty than the average parent for getting away even though we might need it more.

  2. Wow. Just as I was reading this, our respite provider walked in. It was the first time she was spending time with our son.

  3. I have experienc with three different respite providers. As part of a waiver for children with autism, through a local organization that provides funds, and through a local organization that provides a free monthly respite night. It's hard work getting the grant money to fund the local programs. Each are devoted solely to providing respite. One gets grant money from the United Way. The other gets support through the county organization for adults with disabilities and through private funders and grants. It's hard work, but well worth doing.