In addition to traveling one week out of each month for therapy, managing contractors, reviewing proposals, college students, home school students, music lessons, and real life in there... one more reason I haven't been posting here is that I have recently been asked to write and speak in several different venues about Addison's journey and some of the specialized therapies we have used to help him recover from his seizure disorder and overcome dysphagia. That hasn't left any "free" time for blogging. A few weeks ago I was asked to speak to the Impact Club on behalf of Addison and the therapeutic riding program. I have been wanting to post about this amazing type of therapy for some time and simply had no time to write so I am sharing my talk here today.
In 2013 when Addison was born we learned he had down syndrome. He was three weeks old when we met his physical therapist for the first time. We asked what things we should be thinking about long term to help Addison with his hypotonia. She recommended we put him on the waiting list for the riding program. I asked Trudy what we could gain from riding that Addison couldn't get from his regular physical therapy. I was surprised when she answered, "I don't know." She went on to tell us she didn't understand it but she has kids who can't make any progress with physical therapy but when they get on the horses it is like magic.
Riding was all but forgotten during the next three years as we searched high and low to help Addison overcome severe dysphagia which made it impossible for him to eat. When he was fifteen months old our family switched to survival mode when he developed an extremely rare and catastrophic seizure disorder. His neurology team shared that the Infantile spasms were killing off parts of his brain and the only way to attempt to stop them was to use massive doses of steroids to shut down his brain. Once the seizures stopped they would wean him off and allow his brain to reboot like a hard drive. They told us this was far from a guarantee and even if it did work he would most likely develop a secondary, but less severe seizure disorder. The first round of treatment was not fully effective so Addison required an almost unheard of second regiment at even higher doses. Doctors warned us they had no idea how it would come out or on what level Addison would be able to function in the future. By the time he had been weaned three months later our 18 month old son had the body and mind of a newborn baby. He could no longer sit up or even smile.
Over the next year and a half we found ourselves in the aftermath of not only his seizures but the profound side effects of medication. We sought help through every resource we could put our hands on including children's hospital, Yale university and John Hopkins. We dealt with experts in the fields of neurology, genetics, physical, speech and occupational therapy. While we made some tiny gains, Addison never really went very far. As he approached his third birthday he still could not crawl and was not even able to swallow. Through all of this his physical therapist, Trudy, had been his greatest cheerleader. She had never left Addison's side, even traveling out of state with us to meet specialists who were not even in her field. I will never forget the defeat in eyes or the discouragement I felt when she said, "I don't know what to do for Addison anymore."
When Addison's name came up for the riding program in Spring of 2016 I figured he would enjoy riding, however, we had been down so many disappointing roads I didn't think it would actually help him. At the time he was in daily intensive therapy and so very fragile we weren't even sure how he would be able to manage the changes in his schedule or the additional activity. Taking him to church on Sunday exhausted him so much he could not even eat and he napped all day Monday. We decided to give it a try and see how it went. And so one week before his third birthday Addison became the youngest rider to enter the program.
Addison loves animals so I thought he would love the horses. The instructor had mentioned kids are often frightened by the riding helmet so we practiced wearing a helmet for a week before so we wouldn't have a melt down when we got to the farm. What I didn't think of was that when we presented him with a 700 pound horse he might be a little intimidated.
His first class went like this. My husband took Addison into the ring and when they tried to put him on his horse Addison freaked out. He has always been skeptical of new things but as soon as he is engaged he is usually a very easy going fellow. As I watched Allen and the physical therapist trying to coax the kicking and screaming kid onto the horse I stood on the sidelines shouting to put him on and start walking. Which they did. I think everyone at the farm was thinking why on earth did they invite these nuts to join the program?
On the first lap Addison screamed. At the top of his lungs. All the way around.
On the second lap he stopped and started waving and smiling at everyone in sight. We were all sitting on the bleachers watching and we started clapping and cheering so loud the instructor came over and told us to pipe down because we were frightening the horses.
On the third lap he laid his head on Jitterbug's mane and fell asleep. Which is how he spent the next 45 minutes. Snoring. On a horse. At one point his lead, Josh, said, "You know I think he is putting the horse to sleep."
My favorite picture of Addison sleeping on Jitterbug during his first riding lesson
After that Addison spent each Saturday morning loving up on his horse and having a great time. We started seeing so many changes in him. A child who could barely move himself to a sitting position was sitting up taller and straighter and began not just crawling but climbing on everything in sight. He would daily fall asleep during his feedings and had to nap after each meal. But when we got to riding he would gain energy and strength we hadn't seen in him before. We were sold on the impact riding has in a physical therapy program.
Too much fun to fall asleep
But here's one more thing. Even if I had expected the physical improvement, I didn't expect to see a speech therapist in his class one Saturday. But there she was and in one session she took an almost non verbal child and had him giving commands like, "Woah" and "Walk On." "Trot" became Addison's favorite word and he quickly learned to amuse his older siblings by climbing on their backs and using the commands for horse back rides down our hall.
In September Addison was 3 and a half when he started his second semester in the program. Typically, the class starts with horses and riders entering the ring where they mount. However, because Addison could not walk or stand up he had always been carried into the ring while someone else would lead the horse. Then his father would help him mount. In October I was sitting on the observation benches looking around for Addison and wondering where he could be. I had helped him get his helmet on and left him in his usual spot with his Pa. When I finally found him it was with tears in my eyes I watched him hold his horses reigns and walk into the ring with the rest of his class.
Walking into the ring with his class for the first time
It was that moment I understood the magic Trudy had talked about. I don't know exactly why it works but as Addison's Mama I have seen it's impact.
Addison riding in his first show