Katie's doctor asked me to write something for him that he can send to other parents of his patients. I'm not sure he's getting what he asked for, but here is what I wrote.
If I had one bit of advice to give to parents of children with spastic hemiplegia, it would be to set high goals for your child, and work toward those goals at every opportunity. Seek out people who embrace your goals, and never affirm those who balk at them. If you think your child could never do something new, but you would like them to, set it as your goal. I have had the experience that other parents of children with hemiplegia stop communicating with me when I tell them that I refuse to be complacent with my daughter’s treatment program.. I understand why that might sound judgmental, or that I might seem like one of those parents who pushes too hard, or refuses to accept the reality that my child has a disability. Some parents and even some professionals have said, “maybe that’s just the way Katie is. We all have our struggles to deal with.” The problem with that status quo outlook is that I have seen “miracles,” if miracles were given a chance.
Clearly not every child is the same, and some have more severe hemiplegia than others. Our goals should be relative to our own child’s current condition, and be frequently revised. As parents we can grow tired of being our child’s therapist, and we blame ourselves if they don’t progress. I forgive myself for my lapses in caring for her, as I forgive her stubbornness and refusal to do self-care. She only wants to work if she’s having fun, or if the reward is high. She’s a kid, after all, and she’s learning to manipulate the system. She creates adaptations that get her by, and that can impede progress toward “normalcy.” But the overarching force that keeps us on track are those high goals we set. And one after another, she accomplishes them.
Inspiration for this philosophy came to me long before Katie was born. My best friend in the second grade had left hemiplegia as a result of the use of forceps at birth. She never saw a physical therapist that I knew of, but she had the advantage of having a nurse for a mother, and every day her mother would work with and massage her muscles. My friend had to wear special shoes so her left toe wouldn’t point inward, and her balance was not very good on a bicycle. But her mother never stopped tapping into her potential. By the time we were in the fourth grade, my friend was playing piano with both hands, and by the fifth or sixth grade, she was playing Beethoven’s Für Elise. I always knew she had trouble with some things, but it never stopped her. She tells me now, at the age of 39 that she rides a bike with no difficulty at all, and her left hand function is completely normal. She was not able to escape having scoliosis, however. I have added “no scoliosis” to my list of goals.
Another inspiration for us has been the excellent physical therapists that we have worked with over the last 10 years. When we were living in Emporia, KS, Jan Cook was at our door as soon as Katie came home from the hospital. She was the one who started setting those high standards for Katie, and showed us that the impossible was possible. As an infant, Katie never used her left hand at all. It was always clamped hard against her chest. Jan set the goal of passing objects from one hand to the next, and I thought, “There’s no way.” But Katie did it. Then the goal became spontaneously reaching for objects with her left hand, and Katie did it. I feel strongly that she would not have progressed to where she is now if she had not been given the chance.
Had it not been for Jan, we never would have considered visiting Dr. Ganesh Gupta. Jan had gone to a conference where Dr. Gupta spoke about botox treatment, which I had heard of before but had dismissed. Injecting toxins into the body, even at very low doses is a scary thing. But traditional physical therapy had hit a wall for us, and she thought it might compliment what we were already doing. Dr. Gupta’s approach to treating the body as a whole unit rather than treating its individual parts appealed to me. Other doctors often dismiss connections between overall body balance and behavior, connections between the arms and the legs, and Dr. Gupta looks for those connections.
When Katie had surpassed all of the goals that were laid out in her IEP with the school system, we started seeing Karen Bachman at Emporia Physical Therapy. My first experience with Karen was when she substituted for another therapist with the school district. The other therapist had been a frustration to me because I knew that we could be doing more, and I knew that she wasn’t seeing everything she needed to detect in order to really help us. For example, when Katie was 2, she was galloping instead of running. The therapist said with a lot of enthusiasm, “That’s great!” I tried to explain that it wasn’t so great, because Katie should be running. Karen came into our home and not only pointed out that Katie should be encouraged to run with a normal gait, but that EVERY time she is at rest, she should bear weight on both sides of her body. She suggested Katie wear an orthotic device, and that she should have had one since she began walking. Also, she told us that she needed to sit crisscross rather than put her left leg out to the side. Not all therapists know what to look for, and they don’t all buy into my philosophy of goal setting.
So many physical therapists, especially in smaller towns, are not trained to work with kids who have hemiplegia, or understand treatments such as botox injections. I have found that therapists whose main focus is sports medicine can sometimes overlook issues, or will treat the body as individual units. Therapy orders for abnormal gait are taken quite literally, and Katie often ended up walking on a treadmill or riding a stationary bike for a good part of the session, with someone standing nearby to remind her to put her heel down. When I suggested that they might look at arm strength, they told me they needed orders from the doctor to do that. To them, gait was a waist-down activity.
In contrast, a therapist who understands hemiplegia and is taking a more holistic approach will spend more time with massage and stretching, whole body balance, upper and lower body strength, and isometric exercises. They will watch her closely to determine what needs to be done at home, and they will pay close attention to the botox injection treatments. And, it is very helpful once you find that good therapist to see him or her consistently. Most of all, it’s important that your therapist agrees to shoot for your goals. If you ever feel the therapy sessions are static or have become stale, it’s time to advocate for better therapy. There is never any reason in my mind that a child with hemiplegia should be treated as a static case. Children’s brains are very elastic, we were told when Katie was born. The muscles are all there, we just need to find the right technique for tapping into their potential, be it piano, swimming, tai quan do, physical therapy, botox injections, massage, orthotic devices, surgery, or any reasonable method that you can afford. Never stop pursuing what others might consider impossible.
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