Thursday, July 31, 2014

Bells and ears

Last night, I cried like a baby in front of 40 people at a public pool. The day itself had not been terrible. In fact, some good things happened. But I was tired and someone said something. And it was too much.

Perhaps it was too much because yesterday at 7am Martin had to get his annual blood draw to make sure that his medication is having no adverse effects on his body. I did not attend this blood draw. I just couldn't. My husband and father-in-law did the work. It wasn't pretty. There were full-body holds and lots of screaming and yelling involved. But the techs got the blood. And then the guys went out for breakfast. Martin came home and slept.

Perhaps it was too much because at 10:30 I took Martin for an occupational therapy evaluation and we were able to complete about 25 minutes of what was to be a 90-minute appointment. We were in a new place with new people. These people asked Martin to do things like bounce a ball, jump on a trampoline, and tie his shoes. Even though the appointment didn't go so well, the therapists were able to make an evaluation and we will get started with some appointments next week.

Perhaps it was because we had a two-hour appointment in the afternoon with an ABA therapist. She was AWESOME. When we called her last week and explained our situation, she recognized our struggles and worked around the usual wait-list for services. She will come to our home for appointments. She is drafting a behavior plan to help us overcome and end Martin's worst behaviors: the kicking, screaming, throwing things, hitting, and pinching. But she was clear with us. Things will get worse before they get better. The behavior plan calls for Martin's caregivers to do things that will completely piss him off. She told us to buck up for the next few weeks.

Perhaps that's why - by the time I got to the pool last night - I just needed for my kid to swim happily and freely. I just needed to sit by the poolside quietly and watch him enjoy himself. And so when a parent came to me to tell me about the way Martin had "traumatized" his daughter at the pool several days ago and when that parent kept repeating this information over and over even after I said that I had heard him and would take care of things - well, I just didn't have it in me to keep it together.

While I don't get to read much about medical care outside of autism, I'm really interested in it. I've heard about two studies recently that have made me think a lot about my own situation. In the first, researchers found that parents of children in NICUs experience months of PTSD-like symptoms even if their child survives and eventually flourishes. Just the experience of being in the NICU - with its constant alarms and sense of crisis - leaves parents scarred for months. Living with the possibility of death at any moment makes these parents of newborns more like Iraq veterans than like those of us who have never stepped foot in a NICU.

My friend is the researcher for another study. She studies palliative care techniques and their effects on families. She devised a study - informed by therapeutic responses to veterans with PTSD - in which family members who have made end-of-life care decisions get to tell their stories to an empathetic listener with no connection to the ill person. My friend has found that family members feel better and show fewer symptoms of trauma when someone just listens to them without judgement.

Thinking about these studies helps me understand why I broke down at the pool yesterday. It had not been a terrible day. In fact, I was incredibly grateful to have gotten the ABA therapy process initiated. I went to the pool hoping for a little moment of happiness for both Martin and myself. Instead, I got talked to. The alarm bells went off. It was a crisis when I wasn't expecting one. And when I tried to respond, the parent wouldn't listen. And the parent certainly judged.

The takeaway? Let's not be people who set off alarm bells. And let's be people who listen.

PS - The movie is coming along!


  1. Jen - you are so right about PTSD. Our anxiety as parents is incredibly intense, and you wind up with too many opportunities for others to bring it to the surface. I hope your blog helps you know that others who care deeply for you are just listening.

  2. Oh my dear Jen, I so just want to give you a hug!!!! I also hope I am and will be more compassionate to people in your shoes because of you and Stacy and all your struggles and challenges!!!

  3. Sigh. I'm so glad you've been able to link Martin to OT and home ABA, but I'm so so sorry for the long and painful road that has led up to this. In Wooster, OT services practically plop into the laps of parents with kids who need them. I wish we could clone Miss Sandy and send her to Austin. But in any event, I'm glad things are moving forward for Martin and your family. Whew. You're absolutely right about the trauma of it all and the curative power of listening ears. I hope you can find a group of parents to share with. I wonder if there is a room for parents to hang out while the kids have OT. I made some of my best friends hanging out while Drew did Busy Boy Club. Take care, Jen. I'm cheering you on from afar. Kris