My name is Rhoni Golden. I decided to write this blog because I suspect that many people are unaware of the use of service dogs for children with autism. I hope that this website can be a beacon of information for others who are in a situation similar to mine and for the people who care about us.
When I started college, I thought I would be working towards medical school. I always loved science and I am best fulfilled when I can be helpful to other people. Medicine seemed like the obvious choice until I found myself enrolled in a neuroscience class my sophomore year. I remember a lecture where I felt particularly struck by the notion that, through therapy, people could create new pathways in their brains. It was a fascinating thought: Even if a brain had been damaged or improperly formed, repeated therapy could actually cause new connections to grow through functional training. I think that class made me realize that I was deeply interested in the workings of the brain and thrilled by the idea that I might be able to help people whose brains were not performing optimally.
As I went through school and considered my career options, I decided that I did not want to be a doctor. I wanted to be a physical therapist who worked with patients who had suffered neurological injuries. Primarily, this was because I envisioned a day when I would be a wife and mother. I wanted a career that would allow me to be flexible with my time and take breaks in my career as needed. I knew that physical therapy would allow me to do what I loved and still have a family life.
After college and graduate school, I moved back home and took a job on the brain injury team in an inpatient rehabilitation hospital. I loved that job more than I believed possible. The patients were fascinating, the doctor was brilliant and compassionate, and the other therapists on the team were very skilled and cared deeply about their specialty. During my time there, I was stunned by the amount of damage that a person’s brain could suffer and still make very real gains. I also learned that some injuries are too serious to ever get back to “normal.” That was always the hardest part for families to understand. It was almost impossible for parents and spouses and siblings to grasp the idea that the life they envisioned was no longer going to happen. I tried my best to physically help my patients while psychologically helping the families. My motto was, “I can’t predict what will happen in the future. We will always hope for the best. But, in the meantime, we must make the best of what we have right now.” I always insisted that families participate in therapy sessions so that they would feel empowered to help their loved ones when no therapists were around.
During my time at the hospital, I also took on the job of running the wheelchair seating clinic. This was a different kind of professional fulfillment. Whereas the therapy for brain injury patients was about ongoing work and healing, the wheelchair clinic provided immediate relief to difficulties that patients were facing. A properly fitted wheelchair could alleviate pain, increase independence and improve a person’s overall function almost instantly. Through the technology of wheelchair seating and assistive technology, I could really help people make the best of what they had now.
After my first daughter was born, I decided to leave the hospital and work for a private wheelchair company to have more flexibility in my hours. This was an eye-opener for me. Away from the shelter of a hospital clinic, I was able to see how patients conducted their lives after returning home. The community piece was a valuable part of my understanding of the whole patient and their daily lives. It was disheartening to me to see how many patients and families devoted their whole existence to “getting better” or “being disabled.” To my mind, there were three kinds of patients:
- The ones who were constantly looking for the cure. These were the people who spent all of their time going to therapy appointments or traveling to foreign countries for experimental treatments. Everything hung on fixing the disability.
- The ones who were defeated by their disability. These were the people who, when asked the question, “How do you spend your days?” would answer, “Watching TV” or just staying at home.
- The ones who decided to make a new life with what they had. These were the people who went back to school, got new job training, found recreational activities that they enjoyed, and were able to laugh in the face of tragedy.
I always admired the third group. I would wonder at where they found the strength to do it, but I admired them for their determination to enjoy life regardless of the obstacles.
When Gray was diagnosed with autism, I think I experienced first-hand what it felt like to be a part of each of those groups. At first, I wanted to fix the problem. I felt certain that, because I recognized the signs and had Gray diagnosed so early, we would have the problem beat. I was wary of the biomedical approaches because I had seen so many of my patients taken advantage of. In my mind, I did not trust any intervention that was not well researched. I do not believe that there is any conspiracy among doctors and pharmaceutical companies to prevent discovery of a cure or prevention of autism. I know doctors. They are driven to help and heal. But, when it came to therapy, we loaded up. My poor little toddler underwent 30-40 hours of therapy per week (according to professional recommendations). I truly believed that this would allow him to mainstream and look perfectly normal by kindergarten.
When I realized how severely affected Gray was, I slipped just a little into the second category. I would try to limit the times that I had Gray in public. A screaming fit in the grocery store or restaurant is mortifying. I would feel ill whenever a well-intentioned stranger would try to engage Gray in a conversation only to be met with a blank stare from my normal-looking child. I understand how uncomfortable it feels to share your disability with the world, but it is not my nature to seclude myself. My nature told me that I had to choose option 3 and make a good life with what I have been given.
Hope is a symbol of my determination for Gray and our family to have as normal and happy a life as possible. We will go to the mall and we will eat at restaurants and we will play at the park and we will watch baseball games. We may look like a crazy group with our unruly children and service dog and iPad for communication, but, by G-d, WE WILL PARTICIPATE!