As we enter the season of reflection and giving thanks, I have never felt such overwhelming gratitude as I do today. As the parent of a child with special needs, my list of things I am thankful for has never been typical. My unusual list has changed me over the years, giving me a deep appreciation for the things I took for granted before our Jack entered the world.
This year, at the very top of my thankful list is the miracle that electroconvulsive therapy (ECT) is for my son and the most compassionate, knowledgeable medical team imaginable who make it happen.
As I share pieces of our ECT story, I think it is important to stress that ECT is not a treatment or cure for Jack’s autism. Jack still has autism, cerebral palsy and intellectual disability. For Jack, ECT was a last resort to calm the storm in his brain that was causing him to be in severe discomfort 24/7 leading him to dangerously injure himself for many years. It was a last resort to give him peace and quality of life.
Today marked Jack’s 66th electroconvulsive therapy treatment. Over the past eight months he has gone under anesthesia two or three times a week for treatments and he will continue maintenance treatments indefinitely. Luckily, Jack loves going to the hospital. The ECT team have become some of his favorite people and have become family to us. They have been with us since we walked in the door broken and haggard on day one. They have cried, laughed and celebrated with us every step of the way while spoiling and doting on Jack the whole time. The relief ECT has given Jack from his constant suffering has been nothing short of miraculous. My thankful list this year paints a picture of how ECT saved Jack and those of us who love him.
I am thankful that Jack can now sit comfortably on the sofa with us. It’s the little things that the rest of us don’t even think about. Before ECT Jack could not comfortably exist in his skin. He could not relax his body enough to simply sit still. Now he sits comfortably with us in our den and the joy we feel is indescribable.
I am thankful that Jack is developing his own relationships. One of the hardest parts of the past 7 years was that Jack was in too much pain to be his lovable, sweet, funny self around other people. We would see it on occasion at home but the outside world never saw. What others saw was usually scary and sad. Thanks to ECT we got his sweet smile and contagious laugh back. He is finally able to be around our friends and family for the first time in years. He is showing affection towards people outside of our family. He is developing relationships with people who love him for the precious person that he is and not just because they love us. Nothing warms my heart more than watching his face light up when his favorite nurses and doctor give him high fives and love on him or his therapist gives him a big hug. Today he held his sweet doctor’s hand as they wheeled him back to the OR for treatment.
I am thankful that Jack can go to a restaurant with us. Never in my wildest dreams did I think there would come a day when we could take Jack to a restaurant and eat a meal in public without his discomfort causing him to violently hit and bite himself. We would have to rush him out while people stared in disbelief. We finally gave up and quit taking him. Many years later, thanks to ECT, we ate at a restaurant as a family of four. We sat outside just in case but we did it. Jack sat in his chair, smiled and devoured his pizza.
I am thankful that Jack can go inside a store. The lights, sounds and crowds in a store used to aggravate his already uncomfortable body. The self injury would start the second we walked in the door. After many traumatic episodes we stopped taking him. Now he asks to “go shopping”. We wheel him around Target with such pride as if he just won first place in a sporting event. It’s the best!
I am thankful that Jack is well enough to receive behavior therapy. I am also incredibly thankful for his team of therapists who have gone the extra mile to get to know him, teach him and love him. Before ECT we could not get him calm enough for the car ride to therapy much less entering the building. He was in such discomfort that any attempt at therapy resulted in more harm than good. He is now able to see his amazing ABA therapists four days a week. They are teaching him to trust, communicate without self injury and be around people again.
I am thankful that we can take a family picture now. This is another thing we gave up on years ago because it hurt too bad. For some reason it was the struggle that always broke me. His body could not even relax enough to have his picture taken with us. It brought me to tears every time so eventually we stopped trying. Six weeks after starting ECT we went to my mother in-law’s house for Easter (another thing to add to the thankful list) and we took a family picture. All four of us are in the picture without Jack being held down or me on the verge of tears. I could sit and stare at it for the rest of my life.
I am thankful that Jack went trick or treating. Halloween has always been heartbreaking. Watching Jack miss out on one of childhood’s greatest joys year after year because his mind and body wouldn’t allow him to enjoy it, was unbelievably sad. It took 15 years, but this year, with the help of ECT and ABA therapy, he did it! He went with our whole family to a crowded, loud Halloween festival and trick or treated at every table. He smiled when he got a giant candy bar and said thank you to every person when prompted. At one point during the Halloween festival I was so overwhelmed with happiness that I had to stop and catch my breath. I looked at my husband and said “I love ECT”. His response was (excuse the language) “It’s the sh*t”. For Jack, it really is!
I am thankful Jack can now enjoy a vacation. Even in our darkest days, we never stopped going on our annual beach trip but it was exhausting, stressful and forced. Jack was never able to settle down and have fun. We would take turns going to the beach or pool with our daughter while the other sat in the dark bedroom trying to keep Jack as calm and comfortable as possible. Thanks to ECT we ALL had fun together at the beach this year. We even relaxed a little! Jack spent hours laughing and swimming, relaxing in the sun, and sitting with us on the beach. Even though his physical limitations make things hard, it was the best vacation we’ve ever had with him. He truly enjoyed himself!
I am thankful that Jack can go places with us now. Our family used to do everything separately. We had to leave Jack at home with my mother or we would take turns taking our daughter places while the other stayed home with Jack. We were never together for birthday parties, weddings, family gatherings, shopping trips or going to the park. We couldn’t take Jack because he was so miserable and would most likely hurt himself. It was sad on so many levels. ECT has given us our family back. Things are not always easy but just being able to ride in the car together or run in a store with both of my kids and my husband is a dream come true. We no longer have to miss each other all the time.
This list could go on and on but to sum it up, I am thankful that Jack is no longer in constant pain. I am thankful the 7 year search to find him relief is over. The bruises and scars are fading. His body is no longer stiff and rigid. He feels soft and relaxed to the touch. He has grown several inches and gained ten pounds after years of not growing. He can balance his body enough to sit comfortably in his wheelchair. He asks for hugs. He smiles. He laughs. He dances. There are still hard times and his life will always be difficult but he is finally experiencing happiness, comfort and the world outside of our home. As we know too well, things can change in an instant but for now we are healing, grieving the time lost, looking forward to brighter days ahead and soaking it all in. Jack is learning to live again and we are incredibly thankful the happy, peaceful days now far outnumber the bad ones.