*This post is a more comprehensive version of the speech I gave at the 2013 AACPDM Family Forum.
Maya was diagnosed with cerebral palsy 5 years ago and since then it has been a challenge to create an effective therapeutic program that is also in balance with the overall needs of our family. The focus of this post is how the diagnosis of cerebral palsy and having an uncertain future for your child can create extraordinary emotional strain and confusion for families in deciding how much therapy, treatment and practice to include in their child’s daily life. I will share how I went from taking regular cross country therapy trips that pushed the physical, emotional, and financial resources of our family, to embracing a healthier pace and way of life for all of us.
With many conditions, a diagnosis offers an outline of what to expect for the future. When the developmental path or outcomes are clear, parents may begin to set down emotional roots to help us accept and cope with our child’s situation. The diagnosis of cerebral palsy, however, is different. Although receiving the diagnosis often allows us to access services, health benefits, and provides us with a name for our child’s symptoms, it doesn’t offer a road map for the immediate or distant future. As humans we often have a fundamental desire for answers. Answers offer a sense of security and control. With cerebral palsy we have to continuously wait and observe our children over time, and for years, to understand more about how their unique development will unfold. And even as the issues associated with each child’s development become clearer, we still don’t know which issues ultimately will be resolved with time and treatment, and which issues will remain.
Despite these unknowns, many doctors still make predictions regarding a child’s future. Although it may seem reassuring to have professional insight to help us emotionally and practically plan for the future, predictions can actually cause more emotional stress because they are often inaccurate. No one knows for sure what individual outcomes may be. I have heard countless stories from parents and adults with CP about how many doctors were wrong about their future. In our case, our first developmental pediatrician was terribly incorrect in her prediction of how cerebral palsy would affect Maya, thinking it would be much less of a problem in her early life than it has been. The disparity between this doctor’s prediction and reality often made me wonder if we did something wrong or if we didn’t do enough. Although I don’t think that now, it has plagued me in the past and was difficult to leave these thoughts behind. Take my advice and avoid predictions and becoming emotionally entangled in them. This requires tremendous discipline, and finding acceptance in not knowing what the future may look like, and how your efforts may or may not affect it.
When Maya was three years old we began seeing Dr. Hoon, a developmental pediatrician at Kennedy Krieger Institute in Baltimore, Maryland. During our initial visit he asked us what kinds of therapy we were doing with Maya. We had been told of the importance of early intervention, and it is certainly one thing all professionals seem to agree upon (despite not knowing how much and what kind of therapy is most effective for CP). I proudly ran off a list of activities and therapies we had packed into our routine. He then showed us a graph demonstrating that researchers do not know how much therapy is beneficial for people with CP, and still question whether there is a point of diminishing returns (where more therapy has no further effect).
We saw this chart every time we visited, and he would smile and gently say, “Have you seen this before?”. Doctor Hoon was trying to convey the message to slow down. He cautioned us about overfilling our daughter’s therapeutic program and pushing ourselves too hard. He said to us, “There is no magic bullet for alleviating the symptoms and challenges associated with cerebral palsy. If there was one we all would be in line for it.” I heard him but I didn’t. Like so many parents before me I thought that maybe there was a little known intervention out there that most people didn’t know about and would be able to help my daughter further. At the very least I had to see what was out in the world for myself.
The lack of certainty about Maya’s future and, not knowing what combination of therapies would be most effective, made room in my mind for possibilities. I thought that I would rather try and have the potential of a better outcome than not try at all and feel guilty later. I wanted to give my daughter a chance at a more comfortable and typical experience of life. I would realize later that this is territory where parents must be careful. It’s easy to become like Smeagol from Lord of the Rings, who obsesses over the potential power of the ring to the point where it took over his life physically, emotionally, and mentally. You don’t want your quest to help your child to consume you and your family’s precious time and energy so that there is no room for anything else, and other areas of your life and your child’s life suffer.
Smeagol transforms into the creature called Gollum in Lord of the Rings
After our first visit with Dr. Hoon we continued our personalized therapy program for Maya, trying a variety of activities based on other parents’ input, news programs and hunches. It was also around the age of 3 that Maya’s developmental picture became clearer. This was helpful because at least we knew more confidently what challenges we had to try and help her deal with and address. But even with this improved clarity, it turns out that there isn’t much available to make a large and measurable difference for our children. We saw this first hand and yet didn’t know there was also research to support it. During a recent talk about stem cells, Dr. Novak from CP Alliance in Australia, mentioned that researchers have found in some studies that current conventional CP therapies offer only a 4-10% average gain for any particular individual. With outcomes like these no wonder parents feel lost and compelled to hunt for something off the map to help their children. Many of us enter into the role of amateur scientist and avid fundraiser, trying out new possibilities in hopes of helping our children make progress. And this cycle happens repeatedly with many families.
By the time Maya was 4 we had been taking 6 trips/year spaced between NYC and northern California for weeks at a time, spending thousands of dollars on an uncovered treatment in addition to our regular schedule of local therapies. Despite the stress of traveling and related expenses, we felt the effort was well worth it. She was making more progress than she was before with conventional therapy, and she mostly enjoyed these sessions. And truthfully part of ME felt relieved because I was channeling my worries into trying to help my daughter.
But ultimately I came to see the value of Dr. Hoon’s words. I became mindful of how much energy and time we were spending on finding the “perfect” developmental program for our child while life was passing us by. How long were we going to follow this intensive program I created for Maya? How much progress was worth these sacrifices and would we have seen some of theses developments over time without this therapy? No one knows the answers to these questions and that is the tough part about trying to make decisions about what to do and how much. We saw some wonderful benefits from this extra therapy but it didn’t come close to resolving all of Maya’s challenges, and pursuing it so aggressively created new problems as well.
Maya started having seizures that were triggered by all the travel, I was away from my husband for long periods of time, and we were always tired. The turning point for me was when, shortly after one of our trips, Maya had a very long seizure. As I sat in the ambulance and prayed for her life, a different vision for relating to her diagnosis and challenges emerged. I became more focused on enjoying my time with Maya and my husband, rather than focusing on trying to fix her cerebral palsy. We had the best intentions and thought that by working aggressively to help her so early on in life, we were helping her to miss less later on in life. Now I am mindful of the present and how making the present less stressful will our help our family in the long run.
For those of you who are feeling out of balance and are focusing the majority of your energy and your family’s energy into trying to help your child with cerebral palsy, I have prepared a list of insights and advice to help you come back into balance. This journey isn’t easy, and it’s different for everyone, however, we all face common fears and perhaps guilt around trying to do whatever we can to help our children. Be easy with yourself, and if you feel you have been pushing too hard, know that it’s ok. As parents we do the best we can with what we know, understand, and realize at any given time.
CPDL’s Guidance for Cultivating a Balanced Therapeutic Program:
1. Assess and pay attention to how much intellectual and personal energy you are giving to trying to find answers for your child. Be sure to carve out times during the day to simply be with your child, other family members, or spouse without thinking about CP, how your child is moving, speaking, walking, etc.
2. Don’t forgo reason and good sense to help your child. If you are trying a new therapy, make a list of what sacrifices you and your family will be making including any emotional, physical, financial, safety, and unknown risks. Remember that unknown risks do not mean there aren’t any. Discuss these issues with people you trust and your child’s medical team. Set time commitment and financial limits and discuss expectations.
3. Your child will have his or her own developmental timeline. When you compare your child to other same aged peers, you may subliminally approach your child with disappointment and s/he may perceive this as something s/he is doing wrong. Focus on the positive points, what is working and the seemingly small, incremental steps that lead to putting larger developmental pieces together.
4. Assess and honor your child’s physical and cognitive energy limits each day. These may change daily. Besides the seizures, the therapy we were traveling for was recommended twice/day for a week. Maya’s body could only handle it once/day at most. You know your child best. Don’t be afraid to speak up if you think what is best for your child is different from what the experts advise.
5. Be honest and aware of what is driving your approach to creating your child’s therapy/developmental support program. Be on the look out for when feelings of guilt, fear, and hopelessness that may be motivating you to push your child and other family members in unhealthy ways. Remember, it’s your child who has to ultimately integrate all of the information and exercises that you plan. I think for many of us these emotional journeys are a necessary stage to go through on our way to acceptance of the CP diagnosis. As one fellow parent said to me, “For me, it (trying to fix my child) was the only way I could feel any ounce of control when the situation felt so completely out of control.” Those words resonated with how I felt at the time. I had to find some way to help my child and do whatever I could to make her path easier. Because accepting the status quo wasn’t equating with the progress I envisioned, I felt that I couldn’t stand idly by, watching and waiting.
6. Creating a balanced schedule gets easier with time as your child’s developmental picture becomes clearer. What I mean is that you will have a better understanding of what challenges you will be dealing with long-term when you and your child’s professional team will have had time to observe her.
7. Focus on what your child does well and what s/he likes. Integrate interests with opportunities for development. Maya loves riding and to her it doesn’t feel like therapy. The riding facility we go to recently referred to therapeutic riding as similar to sneaking broccoli into cookies and I couldn’t agree more!
8. There is no secret cure for CP and when there is a major breakthrough in symptoms or complete alleviation of them, it won’t be a secret. I am not discouraging you from trying to create a program that works for your child, but just be sure to give other aspects of your life and your child’s life attention as well.
I have definitely moved into a place of deeper acceptance of my daughter’s challenges and I now spend much less of my time and energy thinking about how to make her symptoms of CP go away. By focusing on her accomplishments I feel more optimistic and hopeful rather than hurried and guilty because I am not making enough happen for her. I look for smaller developmental changes while still hoping for the larger ones, but perhaps not counting on them. I celebrate her triumphs alongside her. We spend much more time laughing and having fun. It’s taken time and work to reach this point and some days are better than others.
Through CP Daily Living I hear from many families who have experienced similar emotions, confusion, and distress as our own family. There has been a historic lack of information, support, research and hope for our community. We need to bring our challenges and concerns to a larger public conversation rather than recreating the same frustrations privately in our own homes. We can be more effective and efficient searching for answers together, in collaboration with researchers and professionals. Ultimately I believe the most powerful, effective and efficient gains for individuals with CP will emerge through the larger community focusing on common problems together.
You can look for these opportunities for collaboration by following the work of our US and international CP organizations, as well as my own site CP Daily Living. For daily updates and news please follow our Facebook page or Twitter feed.