NEW!! Update January 2016–My passion for creating education and support resources for the CP community has evolved into a new nonprofit called CP NOW. Through this organization there will be more formal support materials created and distributed for the CP community. Please check out our new Diagnosis Tool Kit created by parents in partnership with doctors and therapists who wish to offer you support and information during this transition. The digital document is available for free via the CP NOW website and you may also order a printed copy there as well–cpnowfoundation.org. -Michele
Cerebral palsy presents with so much variability that saying someone has cerebral palsy does not offer much insight into the individual and family experiences and approaches daily life. This blog only reflects our own experience with cerebral palsy, a small window into a big world. Since you don’t know what your journey will entail, I encourage you to keep an open and positive yet prepared mind as you progress on this path. I have learned that the CP journey is a lesson in repeated acceptance of an unknown future, while simultaneously accepting and managing your child’s present conditions. There is no denying that beginning this journey is hard; but with commitment to your child and determination, you will move forward and you will find that you have inner resources you never knew existed. **for more information on the definition of CP see the section of the website “The Term Cerebral Palsy”.
Receiving a diagnosis of cerebral palsy
I remember vividly receiving our official diagnosis of cerebral palsy. When Maya was born we were told she was at risk for cerebral palsy and we would have to wait and see how she developed for anyone to provide a definitive answer (see NICU for more information about that experience). So, perhaps you would think it would not come as a shock or even a surprise when we did receive the diagnosis. WRONG.
Before we received the official diagnosis, I had kept telling myself that perhaps she was just delayed and would overcome her physical challenges. We believed Maya faced a challenging yet manageable developmental path. Many specialists and professionals were hopeful and felt that our daughter would overcome most of her difficulties. I disregarded and was angered by the one neurologist who did provide what would turn out to be an accurate, yet less than favorable, assessment of her physical presentation. He was in the minority, and naturally I only wanted to focus on the positive possibilities.
Maya appeared emotionally, socially, and cognitively appropriate for her age and this made it easier to remain positive and ignore any signs of her possibly having a diagnosis of cerebral palsy. This is a common misconception about the condition. Neither the hopeful outlook, nor the more accurate and complicated assessment we received is incompatible with a diagnosis of CP. But somehow, giving her symptoms and challenges a title made it seem worse to me when we did get her official diagnosis.
The day this happened my daughter was approximately a year old. Her developmental physician said, “Well, she has cerebral palsy”. There was no lead-in statement or easing into the matter. My husband was not with me at this appointment and these were heartbreaking words for me to hear especially in front of my daughter. I felt like a bomb went off in the room. When I told the doctor that what he said was very upsetting and alluded to its poor delivery he said to me, “Well, this is what she has and it is time to face it now”. Gee, thaaanks. I am glad HE was so well prepared since we were the ones who were going to have to process our child having a disability. He went on to say that it was just a term and nothing had changed. Before I left the doctor’s office that day he topped off his stellar bedside manner by handing me a series of sterile informational papers about CP which looked like they came off of a mimeograph machine from 20 years earlier. Clearly, delivering a diagnosis and helping parents cope with it, was not this physician’s area of expertise.
**This parent of twins (one with CP), journalist and blogger gives an honest, powerful, and witty account of her child’s “Diagnosis Day”: http://www.outrageousfortune.net/2011/03/diagnosis-day-shattered-expectations.html
Here is a beautiful video full of love and support from other parents of children and young adults with disabilities. They were asked to share what they might have told themselves on the day their child was diagnosed.
Emotionally responding to receiving the diagnosis
Despite the doctor saying nothing had changed, for me something did change. Receiving the diagnosis was a game changer for me and I was frightened. I was familiar with the term cerebral palsy and even had a childhood acquaintance that was profoundly affected by it in many areas of her body. All of the images and ideas I had ever attributed to the diagnosis flooded my mind. Even though I had been told CP was not a progressive condition, I somehow now imagined my child as having more problems than without the label. I needed time to process what I was feeling and thinking, including the guilt that I felt as the person who brought my daughter into the world. What I needed was to grieve, and to get comfortable with not knowing what exactly my child would be facing and what she would need from me, her mother.
Whatever your personal reaction may be to facing your child’s diagnosis, and it may be different from your spouse’s, give yourself and each member of your family the time to process what it means for them. My husband’s grieving began much earlier than mine. When I relayed the news of our child’s diagnosis he told me that he had prepared himself. He had already accepted the diagnosis of cerebral palsy (and/or having a handicapped child) and all of its implications as a possibility in his heart.
For some of you, your grieving process and acceptance of your child’s condition may have started much earlier than mine, as you observed various symptoms and conditions that did not seem right to you or you knew were profound. If it is hard for you to accept the term “cerebral palsy”, perhaps look at it solely as a means of directing your child’s medical treatment and care. I know several parents who have no diagnosis for their child and they run around from one specialist to another searching for a label for their child’s list of symptoms. They want a diagnosis!
I am going to emphasize the grieving process again. You cannot begin to come to a place of acceptance of your child’s diagnosis by burying your feelings or skipping over the process of facing and accepting what you are feeling about it. Whatever your particular circumstance entails, grieving is a necessary and healthy part of coping with this journey and each of us grieves in our own way and at different places along the path.
Reaching out for support
Please make sure you feel you have the support you need to manage this often-challenging time. You may find that you require counseling individually, as a couple, or as a family. For some of you this may be your first time feeling that you need some assistance working through your feelings or problems. There is no shame in seeking help. As the parent you have to ensure you maintain your emotional, physical, mental, and spiritual health. The better care you take of yourself, the more energy and strength you will have for your child.
Ironically with some years between me and that day, I can now say that the doctor was right when he said nothing had really changed. CP is a catch-all term covering a multitude of possibilities. Receiving the diagnosis did not change who I knew my daughter to be. Even so, I was pained to hear about anything that was officially wrong with my child that she could not potentially overcome. I assumed that because the diagnosis was permanent, so were my Maya’s challenges.
Avoiding the pitfalls of seeking predictions for the future
In some cases you may discover or have been told that certain aspects of your child’s condition may not improve or, for some of you your child’s doctors may have said they simply do not know what the future holds. Since cerebral palsy presents in countless ways, doctors cannot predict your child’s future and should not try to. They may however, offer possibilities based on what they are seeing at the moment. We were adversely affected by specific predictions made by one of our developmental physicians (not the same one who gave us the diagnosis) made when my daughter was a year old. We were told that her CP was mild and the doctor expected her to walk by the age of two. She is four years old and still cannot sit up without support and she is not yet able to walk. This information is not intended to discourage you. There are lots of typical things our daughter can do, and she has many wonderful talents.
The intention here is to forewarn you about cornering your child’s doctor for predictions and/or accepting what any one physician says without further question. Other physicians and therapists have been very upset that any professional ventured to make specific predictions about our daughter. I wound up envisioning my child’s development in a very different way. With each passing missed milestone I had further healing and processing from facing another set of unfulfilled expectations.
I have also heard about people who had the worst prognosis presented to them and their children developed better than anyone could have imagined. So, trying to find a healthy state of mind between remaining open to positive change, and being realistic about what you may expect for your child is difficult but critical.
Maintaining a positive viewpoint
Sometimes being a parent of a child with CP seems frustrating or unfair, but I find I really do gather strength from forcing myself to identify the bright side of my situation no matter how dimly lit it may be. I encourage you to do this as well. Acknowledge your feelings, but also force yourself to see what is working for you, your child, and/or your family.
I focus my energy on being an advocate/case manager for my child because it is the one area where I have some control and may positively impact my child. You may have case managers as part of an early intervention program, and if you are lucky you will have the same one for a couple of years. But you are THE ultimate case manager and advocate for your child. You will find guides (doctors, therapists, other parents) along the way to help you navigate the tough terrain. What works for one child with CP may not work at all for another child.
Whether you find therapists and doctors competent and effective, or you disagree with how an early interventionist is approaching your child’s care, it is ultimately your voice that matters. If you are unhappy with something you have the right to change it. If you are just beginning this journey this may seem like a daunting responsibility. Give yourself time to find your voice, educate yourself, and observe your child. Your insight is often the most powerful tool you have to help your child. A good doctor or therapist will want to know what you are seeing and perceiving and will view your input as an integral tool to help him/her approach your child’s care.
Another philosophy that has helped me to see the brighter side of my child’s development is letting go of my expectations about how quickly and to what degree changes will occur. This does not mean you do not take action on behalf of your child or that you accept everything “as is” and turn the car off. Instead you approach your child’s development from the standpoint of wanting to lead your child to his/her greatest possible potential rather than solely based upon your personal expectations for him/her. This is radical thinking for some people. The longer I am on this journey, the more I have seen the truth and magic in this approach. Some people may say that it was their unwillingness to listen to reason which made their child so successful. I began to recognize, appreciate and even celebrate my child’s many small victories. Learning to take this approach has been hard for me and my husband. Like the parents of many special needs children, I am wired in a very different way, and feel compelled to constantly push myself and my daughter.
Ultimately, you have to decide and follow your gut about what is appropriate for your child, you and your family. I believe in miracles and possibilities and some days that is all we have, but I also believe in acceptance and grace. I have found that creating balance is a constant process for me personally, and for us all as a family. As with any developing child, certain issues may resolve only to be replaced by new ones which require new approaches and resources.
With this in mind it is important to remember the other parts of your life that matter to you. An article recently published by our local parent to parent special needs organization illustrates this well, “Nurture your relationships with your partner, children, friends and family. Communicate with each other, laugh, do fun things together, celebrate traditions, and be sure to spend quality time with your child that doesn’t focus on his or her special needs. Having a special needs child is life-changing. But remember to nurture the other parts of your life that are truly important to you”.
It is my hope that you never lose your balance, but if you do, remember your resources, find new ones, grab a hand (or the telephone), as your child may grab yours and begin again.
**Look for future posts related to this section and our personal experience. There is so much that can be said here that a book could easily be written on this topic. Below is a quote from a parent and some of her feelings related to trying to create balance:
“I am definitely guilty of fixing! For me it was like one of the steps of grieving after the initial diagnosis. Denial – check. Anger – check. Complete obsession to fix – check. But as the years go by and acceptance and comfort creep in, those emotions don’t visit as often. I see what a rich life we have and how truly we’re blessed. But it’s taken years and lots of crying, talking, and research to get to this point and I know I’ve still got a long way to go! But I think where you are in the ‘journey’ can help with practicing connecting vs. fixing. I don’t think I would have had a chance of understanding it 3 yrs ago” –Jen Stewart on moving toward a place beyond hoping to “fix” your child. This is a concept presented by Anat Baniel in her book Kids Beyond Limits.
Siblings of the child with special needs
Having an accessible pediatrician you trust and respect is very important. He/she should be able to provide you with referrals to local agencies, specialists (neurologists, developmental physicians), and or point you in the right direction for beginning this journey. This person will be your launching point for creating a team of doctors who will support your child; so do not be afraid to change pediatricians if you do not feel you have the right person working with you and for your child.
Here is a comprehensive planner for families presented by Cerebral Palsy Alliance in Australia. You may find it very helpful to organize your thoughts and identify and articulate areas that may need your attention.
The following is an article presented by Reaching for the Stars, and is called, “My Child has been Diagnosed with Cerebral Palsy-Now What???. It offers concrete information about which medical professionals and therapists may be of help to you as you begin this journey with your child.
Here is a video produced in Austrailia that offers information and professional and parental perspectives on receiving a diagnosis of CP. It is the most relevant, relatable, and informative video I have ever seen for helping parents begin this journey. I wish I had seen this when we had received Maya’s diagnosis: http://raisingchildren.net.au/articles/cerebral_palsy_diagnosis_video.html
A wonderful resource for married couples. I highly recommend reading this as early as possible. It offers relevant, candid, and hopeful insights and strategies for coping with your new set of circumstances.
Married With Special Needs Children
This publication is a wonderful resource on coping with your child’s diagnosis. It was developed by The National Information Center for Children and Youth With Disabilities. I came across it as I was looking for resources to include at the end of this section. I wish I had received a copy of this when my child was diagnosed. In fact, I would like to send a copy to the physician who delivered our child’s diagnosis. It is candid and includes quotes and an article from parents of children with special needs.
The intensity and spectrum of emotion you and your family may experience cannot possibly be captured in the brief overview I have given in this section. It has taken me several years to work through this pain and it will be an ongoing process. This publication goes further into detailing what you may experience emotionally, and offers practical guidance for you as a parent of a child with special needs:
Another resource guide written by parents for parents of children with CP. The first section is entitled “Each Of Us Remembers The Day We Learned Our Child Had Cerebral Palsy”. It also includes many commonly asked questions and answers about the diagnosis and how parents are coping with common issues related to raising a child with cerebral palsy. It was created by United Cerebral Palsy and I think it is also a wonderful resource.
How to access early intervention services in your area and to learn more about what this means:
There are several groups on Yahoo that have been set up for parents and caregivers of children with cerebral palsy. To find them search the “groups” section on Yahoo. http://groups.yahoo.com/ It may take you time to find one you like. Occasionally I post questions or read through the archives of these groups. Please keep in mind that although people often have good intentions, they may present inaccurate information, or you may feel compelled to try something with your child that has worked for another family. Always work with your child’s doctors when seeking medical advice. You may share with them what you have heard or read in some of these groups and see what they say. Your child’s safety is most important so use your discretion.
Organizations by state that may offer information to families and referrals to local parent to parent (i.e. parents of children with CP supporting other parents whose children also have CP) centers:
The link below will take you to UCP’s website. This page has an extensive list of resources and organizations that you may connect with in your state:
Below is The United Way’s main website. Here you may search for your local United Way which typically offers access to countless resources and local organizations that may be helpful for you, your child, and family. When you click on the link enter your zip code on the top right side.
United Way also spearheads a nationwide free, confidential, local human services information and referral service. For more information visit:
http://211us.org/ This service is currently available in 47 states, the District of Columbia, and Puerto Rico. Check this website to see if your state is included.
The link below will provide you with information about parent groups:
The supportive words of parents
During this time you may find comfort from reading the poem “Welcome to Holland“. It is a well piece among the special needs community and is written by the mother of a child with Downs Syndrome. I think it offers a beautiful and inspiring approach to thinking about your special needs child from a refreshing perspective. However, some parents may not be in an emotional space to welcome this point of view yet. You may wish to check out a blog post I wrote called “The Ongoing Journey to Acceptance”.
Here is a lovely quote from one of our followers Sara Woodgate who has a blog called “Busy Chasing Butterflies”: “For those who are honestly seeking an insight I’ll tell them it’s the hardest thing I ever thought I would do…but also the easiest and most joyful thing because I completely adore my little girl. I’ll say its painful and fearful and hugely demanding as well as amazing and rewarding and magical. I might tell them I have cried many more happy tears that I ever did tears of frustration or uncertainty.”
The following is an article called “10 Things I Wish Someone Told Me About Parenting a Child with Special Needs”. It is written by Liane Kupferberg Carter who writes for the Huffington Post about raising a child with autism after 16. She offers some very helpful and insightful pieces of information for the new and tenured special needs parent.
The following guest post for Reaching for the Stars entitled “Zen and the Art of Raising a Child with CP” was written by the founder of Ability Catcher, Cindy McCombe Spindler, who is a mom of a 9 year old with CP.
I also think the following article written by Ellen Seidman is wonderful. Ellen blogs about her son Max who has CP on Love That Max. The article was publish in the Huffington Post and is called, “What I Know About Motherhood Now that My Child Has Special Needs.
“Dear Mom of a Typical Kid”
Are you feeling awkward around other mom’s at the playground? Check out this beautifully written blog post from Dana Nieder (blogs at Uncommon Sense) who talks about her feelings and experience surrounding this issue. Her daughter Maya was five at the time the article was written, and she does not have a specific diagnosis.