Strategies for creating balance when your child has CP–It’s tough!

Creating balance in your life when you have a child with cerebral palsy or any other chronic health condition can be difficult. Ever since my daughter’s diagnosis of CP eight years ago, I have struggled with the ongoing tension between wanting to seize opportunities to encourage her greatest improvement and not making our life all about therapy and treatment. For many years when she was very young, there was great uncertainty about her developmental path, and during this time it was difficult for me to find much balance in daily life. As her primary caregiver I kept seeing all of the activities and peer interactions she was missing out on and I felt I needed to fight harder and “shout louder” against her CP and the confusing tide of signals her brain was sending her muscles.  I figured it was better to sacrifice parts of my daughter’s childhood and a few years of mine and my husband’s life, than to miss what I understood were “critical opportunities” to help her have the best possible future.

The difficulty in creating a balanced lifestyle when a child has had a brain injury or disturbance in brain development often relates to the confusion of dealing with an unknown future. This is because no one can tell you with certainty how much potential for change your child has. For my daughter’s toddler years I felt like I was in a race without a finish line, wondering how many areas of development I could support to keep her development as close to her same-aged peers as possible. As she got older, however, I slowly let go of this thinking as I saw that my daughter continued to get further behind even as I pushed the daily limits of her energy and the energy of our family. You may be in a similar position. You may often feel like there are not enough hours in the day to meet your needs and your child and family’s basic needs. You may also have people tell you that “you must take care of yourself” which sounds like a nice idea that you will get to some day in the far off distance. There are however a few tips and tricks that may shift your approach to caring for your child and free up some of your emotional and mental energy and maybe even some of your time.


Responding to a CP Diagnosis

In order to fully implement some of these simple strategies, it is helpful to understand why CP is so difficult to manage and to evaluate the ways you are coping with your child’s CP diagnosis. With many health conditions a diagnosis offers guidance to parents about what they can expect as their child grows. This information allows parents to begin to set down emotional roots, start to cope with their child’s present symptoms and prepare for known future conditions. A diagnosis like cerebral palsy (CP) is different because the developmental path is often unclear and will vary from one individual to another. The diagnosis of CP allows families to access services, health benefits, and provides them with a name for their child’s symptoms, but it does not offer parents the deeply desired road map they are often searching for. This uncertainty can create extraordinary emotional strain as well as anxiety and confusion because parents are unsure of what changes they can help foster in their child and what circumstances they will ultimately need to accept.

Here are some examples of how parents may respond to a CP diagnosis in both action and emotion:

  1. Blame themselves
  2. Deny that their child is having difficulty
  3. Aggressively fight the diagnosis and symptoms through constant and intensive therapy planning—this is not always a bad thing but balance is
  4. Constantly search the internet for new and experimental treatments
  5. Repeatedly ask others–doctors, therapists and other parents–to make predictions about their child

These are understandable feelings and normal ways of coping with the diagnosis, but each of them has pitfalls that are important to be aware of. As an example you may be spending so much time searching for answers on the internet that your relationship with your spouse begins to suffer, or you find unreliable hope in a remedy found online that will cost your family lots of money and disappointment.

This journey isn’t easy, and it’s different for everyone, however, we all face fears and even guilt that lead us to try 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. For those of you who are feeling out of balance you may find the following list of insights and tips helpful in thinking about how to approach caring for your child:

  1. Pay attention to how much intellectual and personal energy you are giving towards finding 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 or without focusing on how your child is moving, speaking, walking, etc.
  1. Don’t sacrifice reason and good sense to help your child. Before trying a new therapy, make a list of the sacrifices the treatment will require you and your family to make. Weigh the emotional and financial costs and the physical, safety, and unknown risks the treatment will present against the possible benefits for your child. Remember that a treatment without any known risks does not mean it is risk free. Discuss these issues with people you trust and your child’s medical team. Set time commitment and financial limits and discuss expectations.
  1. 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, the things that are working and the small, incremental steps that lead to putting larger developmental pieces together.
  1. Assess and honor your child’s physical and cognitive energy limits each day.These may change daily. 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.
  1. Be aware of what is driving your approach to your child’s therapy/developmental support program. Be honest with yourself and look out for guilt, fear, and hopelessness that are motivating you to push your child and other family members in unhealthy ways. For many parents the realization that your motivations may not align with what is best for your child is part of the emotional journey that is a necessary step on our the way to accepting the CP diagnosis. Remember, it’s your child who has to ultimately participate in the therapy and integrate all of the information that comes from your therapy planning. Looking back I understand that I was driven to find better ways of helping my child 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. I had to do whatever I could to potentially make her path easier.
  1. Creating a balanced schedule becomes easier as your child’s developmental picture becomes clearer. Over time, as you and your professional team have had a chance to observe your child, you will have a better understanding of how to focus your time and which therapies and treatments work best for your child.
  1. Focus on what your child does well and what they like. Integrate interests with opportunities for development. Maya loves horseback riding and because it doesn’t feel like therapy to her, it provides both enjoyment and therapeutic benefit. The riding facility we go to compares therapeutic horseback riding to sneaking broccoli into cookies and I couldn’t agree more!
  1. There is no secret cure for CP and when there is a major treatment breakthrough 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.

Over the last eight years it has become much easier to accept that my daughter has a disability. I now spend much less of my time and energy thinking about how to make her symptoms of CP go away and focus more helping her plan and achieve her individual goals in a timeline that is best for her. I feel optimistic and hopeful rather than hurried and guilty. I look for smaller developmental changes, 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. Looking back I cannot say that I would have approached her diagnoses differently, but I wish I had chosen an easier route. In order for me to arrive at the place of acceptance I am now, I believe I had to experience and accept the limits of my power. By doing so I learned to accept what I reasonably could not change, yet still remain open to and hopeful for new possibilities and technology that may increase my daughter’s participation in life. To my surprise I also learned that many times my daughter will spontaneously put together new skills during prolonged breaks from therapy, at times when we are focused on enjoying life instead of obsessively tuning into things like how she is using her hands or holding her head.

Coming to terms with a diagnosis like CP is not always about grief. Sometimes it’s about celebrating our children’s victories and talents, and ensuring that they have the support they need at home and in society, to ensure that those strengths can come forward and can be shared with the world.

2012-11-24 Isle of Palms 142 (1)





Insomnia affects the entire family

Maya has always had insomnia and for a diversity of reasons. When she was an infant my husband and I took turns sleeping with her in a recliner at night for six months because she was so uncomfortable laying down in her crib. Now at the age of nine (almost) her sleep patterns have improved greatly from waking multiple times a night for a couple of hours, to mostly sleeping until morning. The difficulty for us now is that she still wakes us a few times a night to help turn her, take her to the bathroom, help her blow her nose etc.. In these cases she often goes back to sleep but we don’t. It’s a routine of sorts that although we are accustomed to, it wears on us as a family more than I realized at times–with me snapping at Maya, my husband and others. Finally this year and after many years of interrupted sleep, Maya’s dad and I agreed to forego some of our privacy and get extra help in the evening (respite care). No, it doesn’t replace sleep but it helps us to have an extra set of hands when our energy is waning at the end of the day. 

Insomnia and CP are not uncommon (it’s also not uncommon in the general population) but there can be different reasons associated with waking that are important to pinpoint and potentially address to minimize sleep disturbances. These may include pain, digestion issues, problems related to nighttime routines, epilepsy, lack of exercise, hormonal causes and more. In Maya’s case she has a variety of issues going on and not all of them relate to CP. What’s tough is that these issues tend to rotate which means that it’s rare for her to sleep through the night uninterrupted.

I bring this up because when Maya was an infant I felt very discouraged, almost desperate for sleep and none of the new mothers I spoke to could relate to the intensity and duration of these nighttime problems. She was deemed a colicky baby with no good solutions except time. It wasn’t just about nighttime waking, but that she wasn’t a napper either.IMG_0455_2 As Maya got older I saw on some of the CP social media boards that other parents were regularly posting about having sleep issues with their children and a long list of responses with “have you tried…i.e–light music, essential oils, eliminating sweets, melatonin, sticking to the same nighttime routine, a warm bath, soft music, and on and on”? without success. It was clear that insomnia was a problem many families had faced and some were continuing to face and often without great solutions.

If you are in this boat, it may help you to know that you aren’t alone. I know, it’s not nearly as helpful as a good night’s sleep. If you have been to a sleep specialist/s and have tried this, that, and the other, you may wish to consider respite care sooner than we did. And although overnight care didn’t work for Maya (she was always excited to see the nighttime helpers) it may be a good solution for you. It’s amazing how much more energy that little bit of support can give you and the entire family. We need to keep up our energy for ourselves and our kiddos. If you can’t get a handle on the sleepless nights, don’t be shy about reaching out for support.

Dr. Jacob Kean Joins CPRN Leadership Team

Jacob Kean Ph.D.

Jacob Kean Ph.D.

The Cerebral Palsy Research Network welcomes Jacob Kean, Ph.D., to the CPRN leadership team and Executive Committee, as the Data Coordinating Center Principal Investigator. Dr. Kean replaces Dr. Susan Horn in this day to day role. Dr. Horn continues to be integrally involved in CPRN as a member of the leadership team and executive committee. Dr. Kean has taken over responsibilities for coordinating the data center effort to finalize the CPRN Registry Common Data Model, implement forms in REDCap, interface with the team at Nationwide Children’s Hospital implementing the Epic based forms, database implementation and function as the principal investigator representing the CPRN DCC in research projects.

Dr. Kean comes to the University of Utah with a deep background in the development and refinement of clinical outcomes measures and the implementation of evidence-based practices. He expertise is a welcome addition to the CPRN team and has been working with the leadership team since he joined the University of Utah in the Summer of 2015. You can read more about Dr. Kean’s background on our CPRN leadership page.

Cerebral Palsy Registry Milestone

The Cerebral Palsy Research Network (CPRN) reached a major milestone last week with its partner Nationwide Children’s Hospital (NCH). Members of the CPRN leadership and the CPRN Data Coordinating Center (DCC) reviewed latest version of its cerebral palsy registry Common Data Model (CDM) with the NCH leadership in informatics. NCH had given substantive feedback to CPRN on the model in early November. NCH determined that the feedback had been addressed and it was ready to begin its implementation of the CPRN data model. The group agreed to have a checkpoint in February, 2016.

Nationwide Children’s will be modifying its existing cerebral palsy registry, known as Learn From Every Patient, to include the CPRN cerebral palsy registry CDM. This effort will form the basis for CPRN’s electronic medical records (EMRs) based capture system for the Epic system. NCH has generously offered to share its form modules with other CPRN Epic sites. Adoption of the CPRN cerebral palsy registry is the first task of CPRN charter member sites. The use of EMRs for the collection of common data by clinicians makes the CPRN cerebral palsy registry a first of its kind for a multi-center registry. CPRN sites will use hospital EMRs to collect the majority of the registry data as part of routine care of patients with cerebral palsy which is unique. The Cerebral Palsy Research Network is very appreciative of Nationwide Children’s Hospital’s leadership and contribution to this groundbreaking effort.

NCH also agreed to advance the collection of patient reported outcomes (PROs) as part of this effort. NCH plans not only to provide a solution for patient entered data through Epic’s patient facing portal, MyChart, but also to enable clinicians to gather the information directly from patients and caregivers.

CPRN Shares Cerebral Palsy Registry Data Model with the National Institutes of Health

The Cerebral Palsy Research Network (CPRN) shared its Common Data Model (CDM) that comprises its forthcoming cerebral palsy registry with the steering committee for National Institutes of Health’s (NIH) effort to standardize cerebral palsy clinical study data.

The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the National Institute of Neurological Disorders and Stroke (NINDS), the leading funder of brain research, have been working together to define Common Data Elements (CDEs) for cerebral palsy. NINDS has supported the creation of CDEs for many brain conditions such as Parkinson’s disease and stroke in the interest of standardizing data collection and sharing to accelerate clinical research. CPRN leveraged existing NINDS CDEs where possible but completed its registry effort in advance of the NINDS CDE process for cerebral palsy.

The sharing of the CPRN CDM represents a tremendous opportunity to leverage the CPRN registry for future cerebral palsy studies. NINDS requires the use of CDEs for a given condition in studies that it funds.

“We want to make sure that all of the elements are considered for the final NINDS CDEs, “ said Dr. Eileen Fowler who co-leads the CDE effort on behalf of the AACPDM. “The steering committee felt that it would be helpful for the working groups to have a copy of the CPRN data elements.” CPRN founder Paul Gross said that its registry definition process included several members of the CDE working groups. CPRN had stated publicly that it planned to share its data model with the CDE effort as soon as it was complete and is happy that it is well received.

PCORI Cerebral Palsy Study Decision Imminent

The Patient Centered Outcomes Research Institute (PCORI) makes its funding decisions at public meetings of its board of governors. The next PCORI board meeting is scheduled for January 26, 2016 and will include a formal decision on the CPRN/University of Virginia application entitled Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study. The CPRN leadership team members, all of whom are co-principal investigators (PIs) for this study, are eager to hear the results of this PCORI application process. Study funding will greatly accelerate the work of CPRN by providing additional support to bring the leadership team, site PIs and the study patient stakeholder partners together as soon as April, 2016 to kick off the cerebral palsy study.

In the interim, CPRN will announce charter members later this month. Charter members will play a key role in finalizing the infrastructure and governance for the CPRN registry and network operations. The PCORI study and future CPRN studies will build on the registry and network infrastructure to accelerate study planning and core data capture for research.