RESPITE, DONE RIGHT!

Respite Care is a difficult concept for some people to understand if they have not dealt with it in their immediate families. As defined by the Agency for Persons with Disabilities in Florida, “Respite Care provides short-term supportive care and supervision to an individual when the primary caregiver is unavailable due to a planned temporary absence or unexpected illness.”

It IS NOT, as I have seen written by those not living our lives every day, parents shirking their duties as a parent, or avoiding caring for their kids. I realized recently that before I had a son diagnosed with severe Autism Spectrum Disorder, I probably thought the same way as most people that I see make comments such as these. I had three daughters that followed the “normal course”, and I thought I was a seasoned veteran in the world of parenting. I thought it was all part of being MOM, “Suck it up, Buttercup! That’s how it is and what you signed up for!”

The “normal course” of parenting, (whatever THAT is), goes something like this:

• We bring home our babies and our duties are very intense because of the needs of our infants, and their total dependence on us. Although it seems like forever at the time, in a few months, sleep actually does become better and a routine is established. We do not, in general, have sleepless nights for years. When they are toddlers, we have to have our eyes on them constantly, ready to intervene and teach them that there are parameters to what is safe and what is not. The Terrible Two’s give way to the Threatening Three’s, and we think it will never be easier. Over time, we can extend the space between us and our kids and do other things at the same time, without fear that they will be hurt or get into trouble. Eventually, they amuse themselves for the most part and we wind up begging them to pay attention to us. (This is based on my experience with five children ranging from 24 down to 11 years of age, and Aunt to more than I can count in one sitting without getting exhausted!)

When Austin (now 14) was diagnosed at 2 ½ with Autism, I learned that there were other parents out there who did NOT have this experience. I was disgusted that I had judged people that I had no right to judge, as they were not blessed with the “normal course” as I had been. As an Oncology Nurse, I was quick to explain to caregivers for my Hospice patients about how much they NEEDED to take a break and recharge for their well-being as much as the well-being of their loved ones. The person being cared for also needed a break from their caregiver. I did not see that others needed it just as much! I understand it much more now.

Respite is an incredibly valuable service for caregivers for people with chronic, acute, and life threatening illnesses. Respite benefits the caregiver and the client, when it is done correctly. 

This post is a celebration of it ‘BEING DONE AMAZINGLY WELL!” This is the story of success all around. Benefits are felt by the family, the respite worker, and most especially…a caring, wonderful, brilliant, inquisitive, 16 year old named Brandon!

Brandon’s mom called Parents in Action, Inc. to provide Respite Services for her son. According to Brandon’s mom, “He will try ANYTHING at least once. He goes and goes and goes all day, getting every bit of input he can all day long. He has been this way since he was born!”

She spoke proudly as we talked and even apologized for requesting the respite hours approved for them, because he is such a great kid, it is just hard to keep up with him. One of the first pieces of advice I give to parents of individuals diagnosed with developmental disabilities is that “this is a marathon and not a sprint”. We have to take care of ourselves in order to care effectively for our children. That includes planning for time away from them to allow us to replenish our energy. It also gives our kids a chance to “hang out” and be themselves. They get to do things that they want to without constantly having mom or dad over their shoulder. Sometimes the BEST thing we can do for our kids is to give them a break from us!

After much discussion, this mom agreed to give it a try, although she remained cautious. We set and appointment after I matched one of our Behavior Assistants to Brandon based on their interests, personalities, etc. This is something that we pride ourselves on. All of our Respite Workers are also Behavior Assistants. This ensures that they understand Autism and Behavior before they ever work on a case.

Day one with Victor ended with a text from Mom saying that she felt bad for poor Victor because Brandon kept him hopping. I convinced her that this is exactly what Victor had trained to do, and that I was sure that he loved it! She agreed to continue the visits. (Victor also texted saying that he fell into an incredibly sound sleep the second he got home! He also told me that Brandon was the coolest kid, and he couldn’t wait to get back to work with him again!)

Victor and Brandon spent the Winter break doing everything from baseball, to going to a hockey game, to baking a cake! They became fast friends. Brandon can’t wait for time for Victor to come over! He is even leaning toward dressing a bit like him. It works out nicely that this 16 year old boy has a wonderful mentor/friend in Victor to go hang out. Victor models appropriate behaviors for Brandon in settings outside of his home as well as inside. Brandon has taught Victor to think “outside of the box” for things to do and explore. To be honest, I’m not sure which one of them is having the most fun!

Let’s face it, which is more preferable and inclusive for ANY 16 year old boy: hanging out with your mom or with a guy who likes what you do and has become a friend?

Mom has caught her breath finally. She enjoys watching Victor and Brandon together, and even shared this picture with me of the guys. How can anyone look at their faces and think that this is anything but beneficial to ALL PARTIES CONCERNED?