Thursday, March 8, 2012

Respite and the Desperate Life

Recently, the woman who has been Joshua's respite provider for the past 6 years moved on to a different job. In the context of the disability community, respite is care provided by a trained person in order to give the primary caregivers a break. Josh receives 24 hours per month of respite service from our local regional center, the organization that dispenses services from the state and federal government for developmentally disabled individuals.

Although I totally understood her decision, we were very, very sad to lose her. She was a part of our family (as was her daughter, who also served as a respite provider for a brief time). A few weeks after her last day, together with another family who were also her clients, we threw her a goodbye party. I made a lot of food and a huge chocolate cake for the occasion. Then, in front of her family, we attempted to share in words, the appreciation that we couldn't possible capture or express.

In the past six years, this woman has cooked for Josh, taken him on many outings, she's bathed him and has been a critical part of his toilet training. She has gone way beyond the call of duty in constantly being on the watch for products that might help him with his many challenges. She has cleaned up many potty accidents and has calmly weathered tantrums, including ones where he's bitten her. Joshua loves her and sometimes even asks for her by name when he is upset. She has truly been an angel sent from heaven to us. She has helped my life, managing three small kids, to work. She has helped me to survive. My life feels a little bit less desperate when I have respite help.

The transition to trying to find a new respite provider has been rocky and aggravating. At one point, it was looking like I had worked out a path for a person who I trusted to be able be trained and activated to be an official respite provider. However, after a long afternoon of trying to work the complicated logistics out, I eventually found out that, due to budget cuts, she would probably end up being paid less than $5 an hour, which made it untenable for her.

It can be unbelievably frustrating to try to attain and manage services for the developmentally disabled. They are out there but you often have to jump through time-consuming hoops in order to even be able to check them out to see if they are even appropriate for your child. It feels to me like the system is set up to work only for parents who have limitless desk time, patience, and savvy. I could spend so much energy finding, requesting, and managing help that I would have no energy left to actually spend quality time with my child.

Honestly, I have been driven to the brink many times and I consider myself to be a person with a LOT of support in my life. My husband is an amazing partner. My school district, my church, my friendship network, these are all high quality and full of compassion, care and resources. So I often wonder, "What about people who are less supported and resourced than I am?"

According to our local paper, two days ago, a mother in a nearby town shot and killed her 22 year old autistic son and then killed herself. He had recently aged out of school district services and she was overwhelmed by having to care for him all day long by herself. I've been reflecting on this story all day. I've been thinking about how, although I can't imagine taking these actions, I can understand why she did it.

There is a profound sense of desperation and despair that can descend when you can't find the help that is necessary to care for a person who has tremendous needs, even if that person is your child. I wish our society better understood the cost of not making respite more accessible to parents of individuals with developmental disabilities.

If you know anyone who is a caregiver to a child with special needs and you are struck by how much they manage don't say to them, "I don't know how you do it" or "You are so amazing and so strong." Think of one way that you can lighten their load and offer to be of help to them. We need it, even if we are not saying anything to you.


  1. Thanks Susan for this most recent posting. I'm blessed and challenged by your insight and humility (and great writing skills!).

  2. You are so right on, Susan, about all of this. Especially in your last paragraph... we need our load lightened. The compliments are nice but it's harder to roll up your sleeves and get a little into my world. But please do! I would lose my mind without good and abundant help/respite. Hope you have found a good respite person for Josh.