Something to Celebrate
I scrolled through my friends’ spring break vacation pictures on social media. I love seeing their smiling faces and beautiful beach sunsets. I admit, I usually feel a tinge of jealousy that they are able to take their kids on vacations. I long for a fun, relaxing vacation from school and work with my family. We just can’t do it with our son Jack. His anxiety and self injury don’t allow it. It’s too hard on him. It’s too hard on us. But this year was different. I didn’t feel envious. I never even tried to imagine my husband and I relaxing on the beach while our kids played in the waves. We spent spring break 2022 with an incredible medical team who in three short weeks have become family to us. We spent spring break in the short stay surgery unit at the hospital. We spent the week getting electroconvulsive therapy (ECT) for Jack every other day and quite honestly, there is no place on earth I would rather have been.
Spring break wrapped up Jack’s first three weeks of ECT for autism associated catatonia with intractable self injury. I struggle to find words to accurately describe what this experience has been like for us so far. From the moment I read a brave mother’s account of her son’s profound relief from ECT, I knew this is something we had to try. We had tried everything from hyperbaric oxygen to high doses of antipsychotics and everything in between. Nothing worked and my boy was getting sicker. He was not able to comfortably exist in his own skin. I knew that the process of getting ECT for Jack could be the most difficult challenge we had faced in our many years of searching for answers. I also knew that it was our last and most promising hope to give Jack the peace he deserves. Modern day ECT remains controversial for reasons I don’t understand. It is especially controversial for children but when you are dealing with a suffering child who has exhausted other options, it seems more controversial not to try it. There are few places in the US who will treat children with ECT. I knew that in some states you have to go to court for a judge to approve it or that we may have to relocate for a few months to be near a hospital willing to treat Jack. To my complete surprise, things began falling into place and didn’t stop. Before I knew it Jack was scheduled to start ECT at the hospital a few miles from our house. It was actually one of the easiest processes I’ve experienced with Jack’s health. It all felt so right. For the first time I had no doubts that this is where we should be and what we should be doing. The first day was filled with emotions. As we sat in the waiting room with the TV blaring and people staring, I attempted to will Jack with my mind to stay calm. Wishful thinking. A new place, loud noises, people and anxious parents were too much for him. He began to panic and self injure. It escalated until the staff had to whisk him away to the OR and sedate him. While we waited, I sat in a chair in the recovery room and cried and prayed. My prayer was simple. Dear God, Dear universe, Dear the powers that be, this has to work. It just has to. And it did. For the first time in seven heartbreaking years, something finally gave our precious boy some relief. After the first few treatments I began to notice improvements but refused to let myself acknowledge them. I wasn’t sure I could handle getting my hopes up and being let down again. I cautiously whispered my observations to a close friend but my husband and I still didn’t say it out loud to each other. By the 5th treatment, there was no denying it. The constant look of pain and agitation was leaving Jack’s face. His body felt different to the touch. He went 24 hours without self injuring. 24 hours turned to 48 hours with very few episodes. He began eating, sleeping, laughing and hugging. He enjoyed seeing family members who came by to visit. He sat comfortably on our sofa and in the waiting room at the hospital. He played in the bathtub. He was happy. He was not suffering. He was wheeled into the OR for his 7th treatment smiling while the staff stood by watching with joyful tears in their eyes. We are overjoyed to say the least but remain cautiously optimistic. I know things can change. This is only the beginning and Jack faces many challenges but our hearts are lighter. A weight has been lifted from his body that is allowing him and us to move forward and face the future with a new sense of joy and hope. We are allowing ourselves to imagine him being able to return to school and therapy. We are letting ourselves hope that one day he will be able to comfortably go to restaurants and family gatherings again,
Jack will continue to need ECT regularly and we will continue to show up with bells on. We are taking things slow as we all have a lot of healing to do but the peace on our brave boy's face today is something to celebrate!