A Parent's Perspective - CP Daily Living

Today I am pleased to introduce to you, Michele and her family! Michele and her husband created a website, CP Daily Living, for parents and caregivers to access information and resources about cerebral palsy. After their daughter, "Maya", now age five, was diagnosed with cerebral palsy, they noticed a gap in online resources for parents and caregivers of children with cerebral palsy.

Part of their goal is to provide information and resources so that people won’t have to scour the Internet to find it the way they did. The other part is more personal: to share how they struggle with daily challenges and try to get ready for long-term ones. Michele says, "We offer this site as a place of hope, possibilities, and love. Whether it is through simply identifying with a mutual struggle, or learning a better way to do something, or finding a new resource, we hope to make other families’ paths more manageable and graceful with each passing day."

Read on to hear Michele's perspective and to learn more about "Maya", age five, who has spastic quadriplegia with dystonic posturing and epilepsy.

Our life in five words:

Love, dedication, grey hair, silver linings, fabulous food

Four qualities I look for in a therapist:

• Experience. Everyone needs to start somewhere and occasionally the less experienced therapist brings a refreshing perspective to the table. However, the complicated tone and movement patterns my child has require someone who has collected information over time that can only be learned, seen, or understood through working directly with children with neuro-developmental challenges.
• Willingness to form a partnership (as opposed to a dictatorship) with me and with my daughter. We want someone willing to listen to our ideas, concerns, and what other interventions we are using that are working as well.
• Holistic thinker who looks at the whole child and the individual parts and how they are working or not working together. Our OT picked up on a visual integration/processing issue that once we had understood and corrected, made a huge difference in our daughter’s ability to relate to her surroundings.
• Someone who is patient yet firm with my daughter. Please don’t coddle my daughter, but also remember she is still a kiddo, and her road is challenging. We want her to reach within herself to move forward without being beaten down in the process. *Our OT shared with me that she learned a very important lesson when she repeatedly ask my daughter to pay attention and follow-through with completing a task. After the third reminder my daughter looked up and said, “Give me a minute, I am thinking.”

Three resources I can’t live without:

1. Kids Beyond Limits by Anat Baniel
2. Fruiteze for constipation
3. Our bedside video monitor

Two words (or more!) of advice for therapists working with children with cerebral palsy:

Take time to discover what motivates my child and honor that inspiration by incorporating it into your working relationship. The more my child is inspired to take ownership of what she does in therapy (rather than having exercises done to her) the more inspired she feels to initiate practicing and learning more on her own. 

A word of advice for the parents of a child newly diagnosed with cerebral palsy:

One of the most challenging aspects of coping with CP has been to learn to accept the unknown. Cerebral palsy’s presentation and outcomes vary from person to person. Although a diagnosis of CP adds an element of permanency to some of your child’s challenges (rather than the child outgrowing them), have hope and persevere with an open mind, knowing that your child still has the opportunity to improve her skills and perhaps even leave behind some of her challenges. One thing you can know for sure is that you can help your child meet his/her greatest possible potential (thank you Anat Baniel). Adopting and feeling comfortable with this perspective is a process that takes time. You cannot accept your child’s diagnosis by burying your feelings or skipping over the process of facing and accepting them. As a family, it’s been important for us to move through our feelings in our own personal time and manner (and hopefully without hurting our child or one another). 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.

As my daughter has gotten older, a clearer picture has emerged about what kinds of long-term challenges she most likely will face. Having this information has allowed my mind to stop chasing answers and move toward acceptance because at least I now have some idea of what we are dealing with. Before that time, I felt like I was playing that game called “Smasher” where monster heads keep popping up and the player hits them with a hammer only to have more continuously reappear. It’s exhausting, challenging, and makes your head spin as you try to maintain some control over the game. Just like with CP, after you have been in the game for a while patterns begin to emerge that makes it easier to use your energy efficiently to strategize. 

We found that over time a pattern and rhythm of development was emerging that made it easier to navigate this territory and begin to bring some order to what felt like chaos. We were able to see what therapies were and were not helping, and how often we should include them in Maya’s schedule. The goal has been for her to have the greatest benefit without losing skills or becoming exhausted or overwhelmed from too much new information.

When you let go even a little bit of trying to outrun CP, you will find more joy within each day as you begin to see and embrace your child apart from his/her diagnosis. It can be hard to do this. There is often a constant urge to compare your child to other children in order to gauge how much your child is affected by his/her CP. This is completely normal and is a step towards acceptance of reality. Your child will have his/her own developmental path and there is no guidebook for your child’s unique development.

After Maya developed epilepsy, I realized that I needed to shift to approaching her from a place of acceptance and persistence rather than from a place of fear and force. I began to see my beautiful daughter and her smile and light, and I realized that some of my feelings about her condition were translating into me sending her messages that she was not ok. I was fighting on her behalf out of love, but also out of pain, guilt, and a lack of acceptance about her condition.  I don’t beat myself up about it because it is a common and perhaps expected coping mechanism for many parents. I am not sure how I would or could have found my way through it any other way.

Over time the intense feelings I had after the first few years when she was diagnosed have faded into the background. They move in and out, but they visit me less often and are more manageable the further we go on this journey. As Maya has gotten older we have learned to focus on what works for her rather than what doesn’t. She has developed some wonderful gifts despite the challenges she faces.

One dream for my child:

To find fulfillment and joy in her life within the limitations of her diagnosis (whatever they will be) while always being able to rely on hope to lead her forward.

What I do to rest and recharge:

I take a nap whenever I have an opportunity and I find relief by jogging. I was never a runner but one day about a year and half ago I was so overwhelmed and angry that I ran out of the house like Forest Gump. From then on I was hooked. Bubble baths with good smelling treats always makes me smile. I also enjoy writing and gardening. A piece of chocolate or something sweet doesn’t hurt once in a while either.

Michele, thank you so much for stopping by! You and your husband have created a fantastic resource for parents! Readers, be sure to stop by CP Daily Living at www.cpdailyliving.com to find answers to all of your questions about cerebral palsy. You can also follow CP Daily Living on Facebook or on Twitter: @cpdailyliving.