The Peach Pit

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Yesterday Maya ate a peach on her own for the first time. She recently developed the dexterity to do it. She held it in her hands, slowly turning it while juice ran down her chin. Maya loved this experience and I relished in her happiness and her progress. She continued eating until she got down to this unknown object in the center. She held it up and with a look of confusion asked, “Mom, what is this thing?”. I was a little taken aback to hear this question from her. How could she not know? She is 7 and has eaten loads of peaches. She knows about seeds and fruits, and even studied their relationship in school this year. I then realized we have controlled her learning experience by cutting up her peaches, or holding them as she takes bites, stopping before she reaches the pit. She hasn’t had the personal experience of finding a peach pit on her own. 

Maya has some gaps in her intellectual development but these gaps are not because Maya’s learning potential differs from her same-aged peers. She simply has had less opportunities to use her body to independently explore and experience the world through a variety of her senses. As her peers move their bodies in countless ways throughout the day they are repeatedly bombarded with experiences to help them develop a rich understanding of the physical world, it’s laws and concepts. As a wheelchair user who has limited use of all four of her limbs, Maya misses many of these same opportunities or may have them later than her peers.

When Maya held up that peach pit, it was a beautiful moment of innocence and intellectual curiosity. It was also a reminder to me to be patient with her during academic learning (and more), as Maya continues to collect new information and formulate ideas about the world around her in her own time.

Unpacking Maya’s Intense Feelings Before They Become Tornadoes

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Teasing apart and making sense of the behavior of a child with multiple medical issues is often difficult for parents. Sometimes, my husband and I struggle while trying to determine if Maya’s behavior is typical of children or is influenced by pain, sleep deprivation, epilepsy medication side effects, frustration with her limitations, food sensitivities, or personality. Because it is tough to figure out which factors or combination of factors is at play, it can be tough to figure out how to help her. Over time, as we learn more about her and how she processes what she feels, we are getting more confident in our parenting.

Most of the time, Maya is very intuitive, self-aware and able to clearly articulate how she feels both emotionally and physically. This may be due partly to how much time she spends thinking and using her imagination when her physical disability prevents her from being active. At times, though, she gets overwhelmed with her feelings and exhibits incredible periods of emotional intensity and raw “feeling tornadoes” (as I like to think about them). This is when she gets stuck in her emotions and appears to dig her heels into the last thing that set her off. She will yell and sometimes scream very loudly for extended periods of time. During these tantrums she refuses to engage in any conversation or listen to anyone or anything. When this happens, we often have to sit back and wait for the storm to pass. When it does it’s as if a veil lifts and she is back to her usual self.

I am sure Maya feels so much in her young body because of her CP and I have no doubt it gets to be too much to handle as she tries to make sense of what she feels and how to cope with it. As parents, our challenge is to create a balance between having compassion about how difficult it is for her and, at the same time, helping her learn acceptance, resilience, and discipline. It is through these coping strategies that we believe she can learn more self-control. We want her to know that her emotions and behaviors cannot rule our household. One of our ideas has been to focus on helping Maya use her extraordinary insight and self-awareness two of her strengths, to understand how she can deal with strong feelings more easily.

We have found some very helpful parenting strategies from the work of *Magda Gerber (RIE parenting method) and Anat Baniel (The Anat Baniel Method). The RIE parenting method has helped us realize that despite Maya’s limitations, it is vital that we respect and encourage her potential as a unique individual rather than seeing her as helpless. Following the concepts associated with RIE is intended to encourage the child to become, “an authentic child (i.e self-aware, clear in intention etc.) one who feels secure, autonomous, and competent.” These ideas complement much of what we have learned about the Anat Baniel Method, a movement and learning approach that we have applied to parenting. Anat Baniel summarizes her work through the “Nine Essentials” which set the stage for the brain to recognize, accept, and integrate new information. According to Anat Baniel, we are all in a constant state of learning, and in order to help the child move forward we must meet him/her where they are in their understanding and perceptions of the world. From there we may create meaningful awareness for them about their current way of relating to the world, and in turn, their behavior. Creating this awareness paves the way for the child to begin to potentially connect with new possibilities of relating to themselves and other people. It’s very similar to the idea of knowing where you are in order to identify where you can go. We naturally blend ideas from both of these individuals along with our intuition and the information Maya may provide us about what she is thinking and feeling.

Identifying Maya’s triggers for anger and what we have helped her learn:

It is very helpful to identify what situations may trigger these complex, intense emotions in Maya. We talk about these triggers with her a lot and work with her to specifically address them whenever possible. We also work to help her cope with situations when it’s not possible to avoid these triggers. After all, helping her cope with her feelings and difficult situations, rather than avoid them completely, will help her succeed in the future.

Here are a few examples…

1. Hunger! Maya must burn a lot of energy due to her muscle spasticity. She is often hungry and we have found that when complex emotions present before a meal, they are often due to hunger related mood changes. We refer to this as “hangry” which is a blend of the words hungry and angry. We always carry snacks for her and she has extra snack foods at school. At times though, situations require her to wait a few minutes to eat. We are now working on helping her cultivate the discipline to wait during times when it’s not possible for her to eat right away. We try and provide this opportunity for cultivating self-discipline around hunger by giving Maya the option to leave an activity that she really enjoys (rather than eating during it) in order to have a snack. Recently we were over a friend’s house and she chose to wait to eat until her friend was eating, rather than stopping to have a snack. She maintained her good mood in spite of being hungry. Over time we are able to use these examples to demonstrate how she is capable of waiting to eat when she is hungry.

2. People brushing her hair or touching her head, particularly without warning or without discussing it with her first: Since Maya can’t perform many of her daily living activities by herself, there is almost always someone placing their hands on her. Over time, we noticed that hair brushing causes her to have emotional outbursts. After talking to Maya about this, we came to realize that it is probably a function of her lack of independence and the continued infringement on her personal space by others that was creating her intense frustration. We have now told Maya that twice a day we must brush her hair and/or take it down etc. and we will forewarn her of this and be as gentle as possible. At the same time we have promised to get her consent before we come at her with a hairbrush or do other things to fix or primp her hair.

3. Not being understood: Maya gets angry quickly when people don’t understand what she is saying. It could be that she is speaking too softly so that that the listener literally is unable to hear her, or providing too little information for the person to know what she means. She uses a lot of energy to express herself because her muscles tighten in response to how she is feeling and it is harder for her to physically get her words out when this happens. It also takes her additional time to process language and generate a response even though in her mind she may know what she wants to say very quickly. Maya loves connecting with people and therefore it is very important to her that people understand what she intends to share with them. We have made headway in this area by cuing her to answer questions that would provide information that we felt was missing from what she was sharing. We encourage her to take her time, take a few deep breaths, and offer as many details as she can to people. At first she was resistant to listening to us, but over time she has experienced for herself that offering more information usually leads people to become increasingly interested in speaking with her. ____________________________________________________________________________

Just when I think we are moving ahead Maya will have an outburst that is longer and more intense than any she has had previously. This back and forth pattern with her emotional development is not so different from what we have observed with her physical development. We continue to remind ourselves that progress is not always a straight line and that emotional issues like physical issues must be broken down into small manageable components. We hope over time that these broken down parts will make sense to her and she can comfortably and willingly pick up the pieces and put them together herself in a meaningful way.

I realize that we are lucky that Maya has a strong verbal skills and insight into her emotions. For children who are non-verbal the frustration and emotional turmoil have one less way to be resolved. That extra limitation makes it even harder for parents to figure out how to help their child’s emotional and behavioral growth.

One example of Maya debriefing us on her feelings:

Last week we experienced one of those rare moments when we all were calmly moving forward and learning together instead of spinning around in an emotional whirlwind. Maya started to quickly become upset when her friend wasn’t answering the phone. She began to whine and then raised her voice about how upset and angry this made her. She even blamed her friend for her unhappiness because she wasn’t answering the phone! I didn’t react immediately to her behavior but instead, thanks to a rare night of good sleep, was able to maintain some distance from what was a developing situation. I listened from the other room and took a few minutes to think. I told her father that I believed something deeper was triggering what appeared to be whining and simply obnoxious behavior. I asked if there was something else bothering her.

Fortunately, Maya is the type of child to draw distinctions between what someone else believes she is feeling and how it may differ from what she is actually experiencing. In this instance she said she was lonely and bored and angry, and that she hates Sundays because of this. Sundays are days when we try and take it easy and it’s often when Maya becomes frustrated and faces emotions associated with having a body that doesn’t allow her to do what she wants when she wants to and without someone else’s help. It was painful to hear her frustration, but it was vital that we all get clarity on what precisely was bothering her so that we could discuss the larger issues causing it. Unfortunately, even when we got to the root of her behavior, and I offered her an alternative activity, her anger became more intensified. In her own words Maya shared that my suggestion caused her more anxiety because it was something new and too overwhelming for her to process on top of her anger.

She sat with her dad and explained in great detail what her anger was about and how she didn’t know what to do to resolve it. There were some typical kid issues in there about simply being bored and annoyed that she can’t do exactly what she wants, but also some feelings about being limited in her activities. When I proposed a solution of having a new friend come over she said she felt too overwhelmed. The thought of doing something new “overloaded” her and she became confused and frustrated because she also thought she would ultimately have fun. She felt trapped between her opposing feelings and couldn’t see a way through. It was very humbling. Rather than having an agenda to irritate her parents (which yes, sometimes she admits that she does have), she was feeling “so many things pile up on top of each other like a big ball and her body was like whoa”.

When Maya was younger we learned early on that we can’t force her into a space of receptivity for self-reflection and learning. We have to follow her natural rhythm of emotional recovery even if we demand that she stop a particular behavior. Once she is calm and has some distance from what took place (usually that evening), she is often receptive to discussing and thinking through what happened. Waiting for her receptivity, and sometimes our own recovery, allows us all to have a more meaningful and effective discussion. This time she was ready almost immediately to discuss and think through her feelings which was great!

The rest of the day wasn’t a dream or anything, but at least we broke through the surface and helped her break down this wad of emotion that she was lost in. We keep doing this over and over again so hopefully her frustration and anger become increasingly manageable. Often I ask her when she is going to be done screaming or grunting in emotional circles, pointing out that she can stop and choose a different direction with my help. More often now we are seeing her stop herself mid tantrum and we are having more luck finding creative solutions to getting her attention so that she regains control over her emotions more quickly. Maya says that she wants to get past this problem as well. Even if it takes more time, energy, professional guidance, or even peer influence, I am confident we will find ways to help her handle her feelings in a healthy and increasingly mature manner. None of this is easy for any of us. I realize that, just like other aspects of Maya’s development, it sometimes takes her longer to learn what may come more naturally to other children. At the same time, she is also having to process and integrate many circumstances and feelings her peers haven’t faced and will never have to.

This is why it’s incredibly important for me to maintain my resilience and patience and seek help when I am feeling overwhelmed or lost. We are facing some complex issues with Maya and although giving in to her may be easier in the mean time, like any other child, it won’t serve her well in the long run.

You may wish to visit the “Guiding Behavior” section of the website for more related information and articles on this topic.

*Magda Gerber’s early work in the US included working as a therapist at a children’s hospital with older children who had cerebral palsy. She then spent seven years working with autistic children. Magda believed in trusting babies to do what they were ready to do and allowing them to experience mastery in their individual way and time. She treated babies with special needs no differently. She taught us that respecting a child means waiting patiently and trusting, enjoying what the child is able to do rather than wishing or (ever so subtly) asking for more. -From the blog of Janet Lansbury, RIE instructor and RIE Board Member

Grief Exposed

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Photo credit: Kelly Gaines

The rare times I picture the grief I feel about Maya having cerebral palsy I envision it in a cocoon-like incubator with layers of gratitude and hope spun around it. These layers help me cope with her condition and cushion me from falling into the raw grief and sadness that hides further within. Although much healing has taken place, I still am aware of the grief inside me. It emerges in unexpected ways and at surprising times. Its protective layers occasionally become increasingly vulnerable, falling away, exposing the raw and painful core. Something as simple and festive as a birthday party, family gathering, travel, or even a vacation pushes us beyond the comfort of our established routines and circumstances and leaves me facing the harsh reality of Maya’s differences. I enter a space where I am forced to look again and again at how she doesn’t fit into the world. I scramble to gather my alternating cloaks of gratitude and hope but sometimes they begin to fall through my fingers. Raising a child with special needs requires incredible flexibility, creativity and forethought. Over time these qualities have become second nature to me. But within each of us is a threshold, a place where our resilience is challenged.

Every inaccessible bathroom, puzzled stare, required explanation, alternate route, pulls and tugs at my emotional cloak a little each time. Occasionally these experiences gain a stronger hold, stripping my grief of its protective layers. Strangely enough I realized I was feeling quite down after returning from a week of travel. Certainly the trip had its moments and days of fun and laughter. But there was another side to the experience as well, and that was having to constantly navigate the unexpected, inconvenient, and physically challenging aspects of the trip. This isn’t unfamiliar territory to us when we travel, but it felt more intense this time. Perhaps it was the number of places we tried to visit, the time commitments we had, the unusual number of problems that arose, or our stress of observing Maya for seizures. Whatever it was my mental and physical tiredness gave way to grief last night. As I walked into my room to get ready for bed, Maya’s dad asked me what was wrong. I could barely speak. The only expressions that came easily were tears.

After a few moments I told him how upsetting our recent travel experience was for me. Despite the many wonderful events, including my brother-in-law’s wedding and finding several accessible places and incredibly kind and supportive people, this trip still starkly highlighted Maya’s challenges and discomfort. I didn’t realize the degree to which I am unconsciously affected when I leave the safety and comfort of the routine we have at home. Thinking back I realize this kind of grief seems to emerge every time we go away. I finally had some insight into it this time and perhaps that was because my feelings were more pronounced.

We love adventure, travel, and new experiences. Maya loves them too. I am always committed to helping her experience as much as possible as long as she is up for trying it. It brings me great joy. I just didn’t realize that along with the joy, exhilaration, and gratitude that accompanies our new experiences, occasionally my grief becomes exposed as well.

Rethinking Accessible Playgrounds

Ensuring universal accessibility and inclusive play at local playgrounds is a hot topic right now among many of my friends whose children have cerebral palsy. It’s summer time, and parents and children naturally want to go to playgrounds. These visits often reveal accessibility concerns and lead to conversations about how few recreation offerings there are for kids with physical limitations. I feel very passionate about this issue since we have struggled to find and create inclusive activities for Maya. Very often we have encountered a broad array of social activities for children with social and/or intellectual disabilities but almost nothing for kids like Maya with physical limitations.

Just last week I had a meeting with a local organization that is working to improve recreation opportunities for people with special needs in our community. During this meeting we discussed the importance of getting feedback from a broad array of potential users and participants on a particular activity or space. One of the leaders of our local Parks and Recreation attended this meeting and he intently listened to me convey Maya’s experience of the accessible playground located next to his office. I shared the irony of her crying during a previous visit to this beautiful and very expensive accessible playground. Through tears she said to me, “I want to go home. There’s nothing here for me to do!” The gentleman from Parks and Recreation was clearly upset because he took great pride in this play space. Later we spoke privately, and he said he had a feeling the playground wasn’t getting as much use by wheelchair users as he had expected, but he didn’t know why.

It has taken me almost 6 years to figure out where the disconnects are between what my and Maya’s expectations are for a potential play space versus her experience in those spaces. I came to a couple of painful realizations:

1. Just because Maya can access a play space doesn’t mean she will have fun there.

2. She simply cannot keep up with her peers. She gets left behind as they run circles around her.

3. Just because a couple of playground equipment manufactures sell inclusive play equipment doesn’t mean the kids (both wheelchair users and kids without physical limitations) will think it’s fun and worth the tens of thousands of dollars to install it.

4. We can’t always rely on the place space alone to foster ongoing social interactions. I now see the need for bringing some simple play “props” to the playground.

5. No matter what the playground offers there are some days that watching children do so many of the things she cannot will upset her.

The few things that she can do at the playground mentioned in this meeting include turning a steering wheel, pounding on some plastic drums (that don’t make much noise without a lot of effort), and spinning letters. There is one swing that we can transfer her into but it has never fit her. When she was younger the head support was too tall, and now the seat doesn’t fit her. The other playground has a few play structures that are very elaborate including the Sway Fun Glider. This is a big-ticket item (approximately $14,000 installed) that can accommodate Maya’s wheelchair but it neither captured the attention of Maya nor her friends. In speaking with a local rep from one of the large playground equipment manufacturers, I understand that it is a tall order to wrap accessibility, safety, durability, and cost, all together.

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Maybe the solution is to do a little rethinking about what an accessible playground should do. What is the intention and vision of the all of the parties involved? Traditional playgrounds are places for kids to run, climb, and play. In keeping with the theme of movement, accessible playgrounds mostly try to replicate the experience of running or climbing or swinging for children whose movements are limited. But because of all the devices and support that requires, sometimes they lose the most fun part: interactive play. I acknowledge that playgrounds and other activities can’t be all things to all people, but I think we can strike a better balance and perhaps foster more inclusive play once our children access the playground. In the past, people just didn’t know what would work. But now, it’s important to solicit feedback in the planning stages from actual users like Maya, rather than automatically purchasing the few big ticket items available on the market and assuming the playground will foster the inclusive play seen on the manufacturers’ websites.

Since our playground already exists, I am going to work with our Parks and Rec contact to make changes to improve the playground experience of wheelchair users. Of course Maya and I only offer one perspective. We also intend to include local therapists and other families as well. Meanwhile, I plan to bring a few activities and simple “props” to the accessible play spaces that Maya can enjoy with other children. Games as simple as bubble machines, bowling, and bocce ball would be great. Spray fountains are wonderful in the summer. Just yesterday I posted Maya having a blast at a local splash deck. Perhaps we could have a shaded game table like they have in some of our nation’s city parks. Even a simple low hanging net for wheelchair ball playing would mean a lot to her. That couldn’t cost an incredible amount.

Tremendous progress has been made in recognizing the need for accessible playgrounds.  I am grateful for all that has been done. Now that they exist in many places, it’s time to evaluate and improve them. I would like to begin collecting feedback from families around the country. Tell us about existing accessible playgrounds and which play structures and space designs are fun, inclusive, and worth the money. Tell us why you and your children think so and send us your photos.  By doing this we can potentially influence the playground equipment market and benefit from everyone’s experience before we fundraise and plan the next one.

Related posts and articles:

A lot of playgrounds can’t accommodate children with disabilities. A TEDx speaker is changing that. 

Accessible Playground Features I Love-By Julie at Have Wheelchair Will Travel

Livvi’s Place-Guest blog featuring Julie Jones from Have Wheelchair Will Travel. Her family used to avoid playgrounds but loves Livvi’s Place!

Young child with cerebral palsy in wheelchair tosses a bean bag at a yellow matt in front of them.

Field Day 2014-Maya tells Mom, “I’m going, so stop pushing the issue!”

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When will this mom ever learn?

In my attempt to protect Maya I told her teacher that we would not be attending the school’s Field Day today. I planned to make an alternate fun activity day for her at home. She was not very happy with me when she found out. We talked about it and I shared my concerns including something that happened this past weekend.

We went to our friend’s house and when we arrived the family was in the backyard. Maya became very upset and said she didn’t want to go back there and instead preferred to go into the house. When I asked her why she told me because there was nothing for her to do in the yard. Hearing these words and knowing she was starting to openly process what it’s like to be left out hurt me deeply. But in this case I actually disagreed with her, because she had always been able to find something fun to do here. We went back to see our friends and she decided she wanted to stay there for a while and hang out on the trampoline. Any thought or feeling about not being able to find something she could do seemed to have left her. But it didn’t leave me. It was the first time I had heard Maya clearly articulate her feelings about being left out. So, on the following Monday when the email from her school Principal came around that they were having a Field Day this week I thought to myself, “No way”.

But I was wrong. What happened the other day was not carrying over for Maya into how she was thinking about Field Day. I figured this because she didn’t know what activities they would have. So I  went on to explain more about Field Day to her. It didn’t matter. She made it very clear to me that I had crossed a line and she absolutely would be attending. When I told her we would have a back up plan if it didn’t work out she turned to me, clenching her teeth and said, “Mom, STOP PUSHING <the issue>”!

I was a bit surprised and perhaps shocked by her response. I didn’t want her to feel left out, left behind, or sad. I had the best intentions.
But, what Maya wanted was to be able to make her own decision. I actually think this was more important to her than whether she participated in Field Day. One of my personal rules in navigating new circumstances or activities with her has always been to present the options and we discuss them together. I violated that rule in this case. I figured she didn’t know what she was getting into and I didn’t feel that I could make potato sack races, speed games etc work for her.

She was angry. She gave me a laundry list of ways she would make this work for herself.

I really goofed. My own child was pleading her case for inclusion. 🙁

Well, I made it right. Last night I called her teacher and e-mailed the school Principal that she would be attending and I would be there to volunteer. I also promised her that I would once again not make decisions about her participation in activities without her being involved. And I realized that what she feels may vary from one day to another. Some days she may feel like being creative and having us adapt activities and other days she may say “No, thanks”. But ultimately, the choice is hers. That was the take home lesson for this Mom.

So look who had a great time at Field Day…

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CVI

CVI Part Two: Dr. Christine Roman’s CVI Range Assessment

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Since writing the first part of this series I have had the pleasure of speaking with Dr. Christine Roman the developer of the CVI Range Assessment. I also have done my best to perform this assessment on Maya. The CVI Range has a 0-10 scale, and describes three broad phases of visual processing development. Where the child falls on the range corresponds to the types of interventions used to help the child improve his/her visual processing skills.

Based on my evaluation and observations, Maya has CVI and it is impacting her ability to learn. In fact, currently we are approaching an area (Phase III) where she is stuck unless we have further support. Until now, I knew Maya had problems with visual processing but did not understand much about them, nor could I find anyone who could help us make sense of them. Since hearing Dr. Roman speak, reading her book, and going through the CVI Range Assessment, I have a much better understanding of her challenges and may actually be able to help her progress in these specific areas. It’s a rare moment of raising a child with a brain injury where we have a plan!

I now understand why despite repeated eye exams, vision therapy (which was focused upon eye exercises aimed at resolving ocular impairments) and prescription adjustments, Maya still has problems seeing. One particular issue that escaped me was that Maya has difficulty recognizing faces, a condition on its own referred to as prosopagnosia. This is something I found particularly disturbing because I thought Maya’s quirky sense of humor was leading her to repeatedly ask people she knew to tell her their names. After hearing Dr. Roman mention problems with facial recognition as a symptom of CVI, I started to cry, realizing that potentially something more serious was going on with her vision. This issue alone could impact Maya’s relationships with peers and adults, as well as create confusion for her throughout the day. In fact, some of her teachers had picked up on this and had started to wonder if she was purposefully ignoring them.

The possibility of being able to take action and help Maya drew me further into learning more about Dr. Roman’s work. Particularly encouraging for myself and other parents is that Dr. Roman believes parents often intuitively cater to their child’s visual needs. Looking back some of the things I have done to help Maya process visual information is on par with the strategies Dr. Roman presents to help children improve in Phases I and II (Phase III becomes trickier). In fact, Dr. Roman told me that parents have approximately 50% of the information needed to perform a CVI Range Assessment. While this offered me some relief, I am unable alone, to help Maya progress to the next step.

This is the most disturbing aspect about CVI and the current state of research. Without established evaluation processes and intervention protocols, progress for Maya and other individual’s with CVI is left up to chance and parental intuition and advocacy. These children could (and are) easily get stuck in their progress, unable to improve their ability to learn and engage with their environment and perhaps will be misdiagnosed with another condition.

Thinking about Dr. Roman’s work has led me to identify similarities between the success she has had improving children’s functional vision with what we have learned about helping Maya progress in other areas of learning. Whether emotional, cognitive, or physical learning, Maya’s greatest gains have come through helping her brain organize and relate to information in meaningful ways. It sounds like a simple and common principle, but I see it ignored or bypassed by professionals, therapists and educators every day.

To improve visual processing, the automated steps a child without CVI naturally acquires and builds upon over time, must be broken down into increasingly smaller pieces and taught to the child with CVI. This allows the brain to begin to build new connections and accept increasingly complex visual processing tasks (sounds a lot like the principles of brain plasticity Anat Baniel and her predecessor Moshe Feldenkrais stumbled upon).

Through the CVI Range Dr. Roman has created a reliable evaluation measure that offers detailed information about an individual’s visual processing rather than periodically capturing their scattered symptoms. The Range is intended to illustrate in detail how the visual processing skills of a child with CVI may vary from his/her same aged peers who have normal visual processing capabilities.

Dr. Roman firmly believes that CVI can be improved. Despite a disturbing lack of information and support for this field of study, she has research to support her claims. In the following study, published with her husband, neonatologist Dr. Lantzy, “Outcomes and Opportunities: A Study of Children with Cortical Visual Impairment”, the data suggests,

1. Functional vision in individuals with CVI can be measured.

2. Improvements in functional vision are not simply associated with a child getting older, but improved through using the CVI Range Assessment and corresponding interventions.

3. A child’s particular neurological history did not dictate their ability to move up the CVI Range/ improve their visual processing.

Unfortunately this is only the beginning of the research that is needed to expand the field of CVI and generate support for early intervention services. Despite the dire need for additional research, Dr. Roman is unaware of any other CVI assessment and matching intervention program. A lack of support from other professionals has hampered the betterment of the field. Dr. Roman was forthcoming in sharing with me some of the resistance she has been met with by her peers and some medical professionals in discussing CVI and in looking for collaborators to improve screening and outcomes.

“What’s their beef?” I asked her.

She said some professionals have complained that CVI requires too much time and effort. Others don’t believe there is anything that can be done about CVI because its origin is an unchangeable brain injury (a common theme directed toward people with cerebral palsy). There also seems to be some longstanding squabble over who should be responsible for supporting kids with CVI: vision specialists or neurology specialists. And finally, but very importantly, there is no reimbursement for treating CVI. This financial reality means that many professionals may not be motivated to pay attention to new information about diagnosing and improving CVI if they can’t be reimbursed for it.

This doesn’t mean there aren’t professionals trying to identify and treat CVI. There are several traditional diagnostic measures in use for CVI including MRIs, Teller Acuity Cards, and Visual Evoked Potential screenings. In discussing these with Dr. Roman she shared that she developed the CVI Range Assessment because she never felt these existing evaluation protocols were accurate, reliable, or provided comprehensive information about the individual’s functional vision. Moreover, according to Dr. Roman, it is imperative that in order for interventions to be meaningful and effective for individuals with CVI they must correlate with the individual’s current level of visual processing skills. Many treatment strategies are one size fits all, do not identify or adjust to each individual’s specific needs, and do not track their progress in those areas. In her trainings Dr. Roman often says, “You need more than pom poms and a light box to treat CVI.”

Dr. Roman also explained several instances to me where she believes evaluations and treatments in use for CVI are ineffectively borrowed from ocular impairment strategies. Ultimately this bothers her because the treatments or interventions for an eye condition are not the same as those for a visual processing impairment. Understanding the differences between ocular and visual processing issues and how to treat them, is imperative to supporting an individual’s visual health, quality of life, and ability to learn.

The CVI range developed by Dr. Roman has been validated by other research studies. Dr. Sandy Newcomb from the University of Maryland has studied and published the reliability and validity of the CVI Range in the Journal of Visual Impairment and Blindness. Her research outcomes validated that the CVI Range is a reliable tool for measuring the degree of CVI in an individual.

Despite the ongoing confusion and controversy about CVI, Dr. Roman remains passionate and committed to learning and sharing as much as she can about the condition. The goal of her CVI Range Assessment is to integrate a set of interventions into the child’s education program throughout the day rather than to add to the list of therapies that the family is already committed to. The information gathered through the CVI Range is designed to transfer easily to the Individualized Education Plan, where it can be implemented free of charge to the family.

It seems support for Dr. Roman’s work is spreading among therapy professionals and parents. She shared with me that four leading medical institutions (I am not at liberty to name them) are currently working to set up testing of her CVI infant screening protocol. This is exciting news to Dr. Roman, who is eager to help children with CVI be indentified as early as possible in order to help them access treatment.

As mentioned in the first part of this post, the Academy of Pediatrics articulates guidelines for vision screening and monitoring, but there is no protocol to evaluate and track the problems and progress for people who may have CVI. Dr. Roman keeps her courses open to anyone who has a sincere interest in learning about CVI because she believes “Kids with CVI can’t wait”.

Dr. Roman’s work is another confirmation for me that new learning and neurological connections for children with CP/brain injuries is possible. Perhaps with more pioneers like Dr. Roman and more research, scientists will continue to identify key pieces involved with harnessing brain plasticity. My hope is that one day we will overturn the notion that children with brain injuries have limited hope for improvement, and that early intervention and habilitation for vision, cognition, motor skills, and more, will be increasingly successful and commonplace.

learning

_________________________________________________________________________

How do I get help for my child?

Dr. Roman is very dedicated and focused on doing whatever she can to help support individuals with CVI. She has an extraordinary blend of humility and passion about her work. In some ways I told her she may have too much humility given the modesty of her website which excludes information about her speaking engagements and what types of training she can offer. But promoting herself and her work are not her focus. She waits for parents, educators and therapists to call upon her and tell her what they need. With that said, I asked Dr. Roman to share with me which states have put together organized trainings on the CVI Range. You will find these listed below. Dr. Roman is currently working on her second book which will clarify the information presented in the first, and focus on supporting people with CVI who are in Phase III. To find resources in your area you may wish to join the following facebook pages:

“Thinking Outside the Light Box”

“CVI Phase III”

“Little Bear Sees”

“Cortical Visual Impairment Awareness”-closed group

You also may find information from your local parent to parent organization. If you get stuck please feel welcome to contact Dr. Roman directly by phone. You will find this information on her website: http://cviresources.com/page1/page1.html

More Resources (not included in Part 1):

Dr. Roman is available upon request to provide training and educational information about CVI. http://cviresources.com/index.html

The following states have participated in professional training by Dr. Roman. Some have initiated mentoring programs for training people in the use of the CVI Range. The contact will vary depending on who provided the funding for the training program/s. If you state is not listed you still may be able to connect with someone local who has attended one of Dr. Roman’s training programs. You may wish to ask your local parent to parent organization about potential local resources.

The Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER) place that maintains a state by state directory and may be able to connect you with a local professional trained in the CVI Range.

ConnecticutNew England Deaf Blind Coalition

DelawareDeaf-Blind Project

New HampshireNew England Deaf Blind Coalition

MaineNew England Deaf Blind Coalition

MarylandMaryland Deaf-Blind Project

MassachusettsNew England Deaf Blind Coalition

MichiganDept of Education: Low Incidence Outreach, Collette Baumanbaumanc@michigan.gov (517) 373-2887 or (888) 760-2206

PennsylvaniaWestern PA School for Blind Children

VermontDeaf-Blind Project

WashingtonWashington School for the Blind

West VirginiaDept of Eduation

Dr. Roman has also conducted trainings internationally. Please contact her office for more details about opportunities for her to come to your local area to provide CVI training.

 

Young child with CP sits on the floor with a puppy licking their face, with a toy tea set in front of them.

“I betcha think I don’t have CP anymore.”

Young girl, on the floor with a puppy licking her face, with a toy tea set in front of them.Did that get your attention? It got mine this morning. Maya said this to one of our dogs as she used her new gait trainer to walk to the kitchen for breakfast. It was her first time doing this! I typically give her the option to choose her mode of transportation; crawling, wheeling in her chair, standing while wheeling, or walking. Today was the first time she had chosen to walk there. I think her success and joy in taking her 100 steps for CP this past week inspired her to choose walking today.

I am being very careful not to push Maya too hard about walking. Walking requires much energy and effort on her part. If she isn’t successful, or if she doesn’t find some joy and personal gain from walking, she probably won’t continue if given the choice. That’s human nature. Although it is important for our children to follow our guidance, “for their own good”, because of safety or until something becomes easier and they realize later the importance and value of what we are forcing them to do, this is one area where we have decided pushing Maya may not be a good idea in the long run.

I know that despite her determination and resilience, Maya definitely has identifiable limits. I can tell when she has emotionally crossed a line and becomes discouraged and tired inside, while obeying our wishes on the outside. For several years now I have been carefully observing the line between her feeling inspired versus discouraged and tired. Adversity is certainly a part of being human, but I cannot deny the constant struggle Maya has to navigate her world throughout the day. It makes me keenly aware of how much pressure is placed upon her.

From the time Maya was about a year old I have heard from therapists and from adults with CP, that although parents may have a laser focus on getting their children to walk, the individual with CP may not have the same aspirations. Later on when the person is old enough to make his/her own decision, he or she may choose to use a wheelchair because walking is too hard. With this in mind, I am working on keeping options open for Maya and encouraging her to move, exercise, and enjoy herself as she develops a relationship with her body. For now I really like the benefits I am seeing from Maya learning to walk, but I am going to be ok, and I know she will be too, if she isn’t a “walker”.

So what exactly did Maya mean when she said, “I betcha think I don’t have CP anymore.”? As she explained to our Jack Russell Terrier, Millie, she still has CP but the gait trainer is helping her to take steps and move in a new way. It was thrilling for me to witness Maya experiencing new possibilities in her body, and feeling excited about them. I had just as much joy and pride about Maya’s perspective and what she felt on the inside today, as seeing her take her 100 steps this week.

 

Cortical Visual Impairment (CVI) & Cerebral Palsy: Underdiagnosed & Undertreated



This is part one of a two-part post I will be writing about CVI:

Cortical visual impairment (CVI) is a neurological condition that is the leading cause of visual impairment of children in the US and the First World and is commonly seen in people with cerebral palsy (1. Good, Jan, Burden, Skoczenski, & Candy, 2001, p. 56.). It is not an eye condition. Resulting from damaged or malformed visual pathways and/or visual processing centers of the brain, CVI presents very differently than other types of visual impairment. Whereas a typical visual impairment can be diagnosed with an eye exam and vision testing, CVI often presents with a normal eye exam that does not explain the individual’s significant lack of visual function. Because of this discrepancy, CVI has been difficult to diagnose and treat. As I have learned more about CVI, I have begun to grasp how important it is for parents of children with CP or TBI (traumatic brain injury) to be aware of it’s signs and symptoms and how this recognition can make a dramatic difference in a child’s learning and future.

At the 2013 AACPDM annual professional’s meeting, Jen, a fellow parent and friend, who also has a child with CP and CVI, encouraged me to attend a presentation by Dr. Christine Roman, a leading expert on CVI. Hidden in this small conference room in a hotel in Wisconsin, I uncovered critical information that I felt I needed to spread to the CP community.

The lecture was inspiring and heartbreaking. Tears rolled down our cheeks as Jen and I watched videos of several children, previously diagnosed as blind who were given a corrected diagnosis of CVI, and learned to improve their vision. For years they had been deprived of opportunities to interact with and learn about their world because they were misdiagnosed and no one knew how to work with them. The key was to provide the right setting for each individual child to process visual stimuli. Then it became clear that not only were these children not blind, but that a new world could be opened up to them.

I wanted to shout from the rooftops and tell parents, educators, and doctors, “Hey, you, over here!!” “This researcher is onto something and it’s not just another diagnosis!” “She has found a way to improve the vision of people who have CVI.”

I left the lecture and couldn’t stop thinking about whether CVI could explain Maya’s mysterious visual processing problems. When she was three, Maya’s OT kept telling me, “Something isn’t right with her vision but I don’t know what it is.” Her eye exams didn’t offer insight into these problems. Maybe now I had an explanation. Over 40% of the brain is devoted to visual function! Knowing this information, if a child like Maya has damage to her brain, there is a chance that her visual processing centers may have been damaged as well.

During her lecture Dr. Roman discussed how children with CVI are also often misdiagnosed as having other conditions. Some are diagnosed with autism because their behaviors are similar to children on the spectrum (it is also possible for children on the spectrum to have CVI). Children with CVI also may be mistaken for being less intelligent or less capable of learning because of the challenges they have processing visual stimuli.

Dr. Roman said, “Some of these children who have brain injuries that are considered ‘so severe’ have been approached by others with low expectations for their learning capabilities. But it’s interesting to see what happens when these children have visual access to their world. Some of these children may not have demonstrated a desire to move because they are not able to see the world in a meaningful way.” After evaluating thousands of children, Dr. Roman reports that a child’s ability to improve functional vision on the CVI range does not appear to be influenced by the type of brain injury.

The major causes of CVI:

Although CVI can be a stand-alone condition some people with CVI have additional disabilities including:

  • Epilepsy
  • Cerebral palsy **One former President of the AACPDM told me he believes more than half of the CP community has CVI and most of them don’t know it!
  • Moderate cognitive impairment or lower
  • Sensorineural hearing loss

(Adapted from Khetpal & Donahue, 2007; Matsuba & Jan, 2006)

Why haven’t I heard about CVI and how pervasive it is in the CP community?

Dr. Roman said that CVI didn’t enter the medical literature until about 20 years ago. Many pediatricians and other doctors are still unaware of the condition and it is likely significantly underdiagnosed. Despite the Academy of Pediatrics articulating guidelines for vision screening and monitoring, there is no protocol for CVI evaluation and monitoring. Without formal recognition and consensus on diagnosis and intervention, time spent on treatment would not be covered by insurance.

At this time Dr. Roman says it’s mostly parents and educators who approach her team because they want more answers about their child’s vision that they haven’t been able to get. Dr. Roman hopes that CVI begins to gain more widespread and formal attention from the medical community in order to support assessment and early intervention.

The redeeming news for me was that regardless of professional disagreements, Dr. Roman has developed what appears to be a reliable system of evaluation and monitoring for CVI which she readily shares (it’s in her book as well) and which can be incorporated into educational and home settings.

What is Dr. Roman’s interest in CVI and what has she done in the field?

Dr. Roman began her career working as a teacher of children with visual impairment for 17 years. She was frustrated that many of these children were overlooked and she felt dissatisfied with her ability to help them. She went back to school to learn whatever she could about “this mysterious form of visual dysfunction,” (which she later learned was CVI) and how she could better support these children.

She is currently the Co-Director of Pediatric View in Pittsburgh, Pennsylvania and serves as Project Leader of the CVI Project at the American Printing House for the Blind in Louisville, KY.  Dr. Roman also is a Project Consultant/Trainer to two 5-year multi-state CVI-mentor training projects working to teach professionals to evaluate for CVI and to employ the CVI educational principles she has developed.

Dr. Roman’s contributions to CVI are built upon the foundation developed by pediatric neurologist, Dr. James Jan. She furthered his ideas by establishing the CVI Range, a 10-point scale assessment for determining whether someone has CVI and evaluating their level of function, as well as principles for guiding improvement. Although medicine and special education have not identified a body of best practices for assessment and intervention for children and adults with CVI, Dr. Roman is deeply passionate about continuing to share her knowledge of CVI and what techniques she has discovered to best support identifying, understanding, and improving the vision and education of people with CVI.

Dr. Roman’s 3 components for confirming the presence CVI: 

1. Eye exam doesn’t match up with how child uses vision

2. Big neurological event-common to all children with CVI

3. Presence of 10 characteristic behaviors (assess and evaluate)

There are other evaluative techniques used but Dr. Roman has found that these components to offer the most reliable and comprehensive assessment.

The 10 behaviors evaluated by using the CVI Range Assessment Protocol:

  1. Attraction to color (this is often pointed to as a sign of autism but kids with autism don’t NEED color to see but kids with CVI do)
  2. Light gazing and/or non purposeful gaze–people with CVI often need more light to see or will gaze non-purposefully because they can’t make sense of what they see
  3. Require movement to see
  4. Difficulty with visual complexity and sorting visual information–things are confusing to look at especially when there are lots of visual patterns, or competing sensory information
  5. Visual latency–visual responses are slow or delayed
  6. Visual field preference–children with CVI see better looking at objects in certain directions (such as left or right periphery), often difficulty recognizing information in lower field
  7. Difficulty with distance viewing–this is related to the preference for visual simplicity. Objects far away may become lost among other objects or scenery.
  8. Visual reflex differences–often don’t blink when touching their nose, not blinking when threat coming at them
  9. Difficulty with visual novelty–child looks at familiar thing instead of what is new in the visual field. Because the whole world often looks new to children with CVI they tend to focus on what they can recognize rather than what is novel.
  10. Lack of visual-motor match–look and touch occur as separate functions, e.g., child looks, turns head away from item, then reaches for it

The CVI Range assessment is NOT a replacement for an eye exam, but helps to describe how the child sees. It compares visual functions across a diverse population of children 6-21 years old and provides a common language for describing levels of function. The Range is a change model and is supposed to be used to develop appropriate interventions leading to improvement. Dr. Roman’s approach is to develop more vision in the brainso the individual continues to make progress in the range and in turn his/her functional vision.The educator/professional uses the range to monitor changes in visual processing, and adapt the individual’s environment to correspond with those visual processing improvements.

Dr. Roman has a goal of getting all children to 7 on the range and, although most people with CVI naturally improve over time, Dr. Roman says progress is dependent on what can be done to foster improvement, as well as to offer support as early as possible.

Five Big Ideas for Working with Children with CVI:

(Adapted from Roman-Lantzy, 2007)

  1. Understand and be sensitive to the child’s visual world.
  2. Develop familiar routines and activities.
  3.  Offer visual stimuli at (but not above) the child’s level.
  4. Approach the child gently, with respect and humor.
  5. There is no universal CVI program- Each child is unique.
Stay tuned for Part 2 on CVI and Cerebral Palsy where I will detail more personal insights and ideas about CVI and visual processing.
Sources:

1. Good, W. V., Jan, J. E., Burden, S. K., Skoczenski, A., & Candy, R. (2001). Recent advances in cortical visual impairment. Developmental Medicine and Child Neurology, 43: 56-60.

CVI Internet Resources:

Locate a CVI expert or an individual who has been trained in administering the CVI range

Pediatric Cortical Visual Impairment Society

American Printing House for the Blind

American Foundation for the Blind

Dr. Roman discussing CVI on video 

Cortical Visual Impairment 101– blog post from the website “A Day in our Shoes” an IEP resource website for families with special needs children

Dr. Karen Pape discuss CVI in one of her blog posts, “Myths and Truths about Cortical Blindness: Baby Brains DO Recover”

Video-Strategies for Improving Literacy Skills in Students with CVI-Perkins Tutorial

Books on CVI:

Dr. Roman’s Book–Cortical Visual Impairment: An Approach to Assessment and Intervention (The educator/professinal CVI Range assessment is in the book)

Support Resources:

Thinking Outside the Light-Box-Vision Therapy Support Group is a CVI fb support group for parents

Little Bear Sees a website offering wonderful information for parents about children with visual impairment. They also have about CVI available through their website.

More on Dr. Roman’s credentials:

Dr. Roman was previously the Director and Assistant Professor in the Program in Visual Impairment at Marshall University Graduate College, South Charleston, West Virginia; Research Assistant Professor at the University of Pittsburgh Special Education-Vision Studies Program; and Infant Developmentalist in the Neonatal Intensive Care Unit of Western Pennsylvania Hospital and the Children’s Home of Pittsburgh. She also directed Project CRIB at the Western Pennsylvania School for Blind Children. She has contributed journal articles and book chapters on orientation and mobility, children with multiple disabilities, and visual assessment for infants and has presented lectures and workshops on cortical visual impairment all over the United States and around the world.

 

 

Q&A with Dr. Marshalyn Yeargin-Allsopp Medical Epidemiologist & Chief of the Developmental Disabilities Branch National Center on Birth Defects & Developmental Disabilities CDC

Dr. Marshalyn Yeargin-Allsopp
Medical Epidemiologist and Chief of the Developmental Disabilities Branch
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention (CDC) USA

1. CP Daily Living: How can CDC help the CP community?

Dr. Marshalynn  Yeargin-Allsopp: CDC is committed to continuing to provide essential data on cerebral palsy (CP). Communities can use CDC’s CP tracking data on the number and characteristics of children with CP, including information on CP subtype, walking ability, and co-occurring conditions. This information may be helpful in in planning for services, guiding policy, and promoting full participation in community and family life.

We also co-host events to raise awareness of CP and engage local communities that collaborate with CDC on CP tracking. These events are free of charge and open to the public. This year, we will be partnering with University of Wisconsin-Madison to host an event on March 1, 2014. For more information about this event, please contact Julia Richardson at jrichardson1@cdc.gov.

2. CP Daily Living: Where do you get funding for your CP work?

Dr. Marshalynn  Yeargin-Allsopp: The Children’s Health Act of 2000 authorized the creation of the Autism and Developmental Disabilities Monitoring (ADDM) Network. The ADDM Network is a group of programs funded by CDC to estimate the number of children with autism spectrum disorder and other developmental disabilities. By using the infrastructure already in place for tracking autism spectrum disorder, and without additional funding, CDC has been able to track the number and characteristics of children with CP.

3. CP Daily Living: What type of studies do you conduct? What other types of studies or programming could you do to further our knowledge of CP?

Dr. Marshalynn Yeargin-Allsopp: CDC’s work in CP focuses primarily on tracking. For example, we know that about 1 in 323 children has CP based on tracking in multiple U.S. communities. Tracking has helped us learn more about causes and the risks for CP in hopes of finding ways to prevent CP. For example, we reported that approximately 10 -15% of CP is due to events that occurred after the newborn period, such as head injuries, meningitis, or stroke from sickle cell disease. Some of these events are preventable with public health interventions such as child passenger safety measures and vaccinations (shots).

CDC is well-positioned to build upon the existing ADDM Network to expand the scope of its current activities and answer more questions about CP. A comprehensive strategic plan for CDC’s CP activities might include:

  • Tracking younger children with CP in order to better understand when and what interventions are being used.
  • Learning more about the risks of CP and ways to prevent it by conducting research among children with CP, such as special studies of children with CP identified by the ADDM Network.
  • Studying issues across the lifespan, such as employment, by following up on adults with CP who were identified in childhood by the ADDM Network.

4. CP Daily Living: Why it is important to track how many people have CP? Are there any other agencies tracking this information?

Dr. Marshalynn Yeargin-Allsopp: It is important to know how many children have CP so that appropriate plans can be made to support children with CP and their families. Understanding the number and characteristics of children with CP is key to promoting awareness of the conditions, helping communities coordinate service delivery, and identifying important clues for further research.

CDC’s ADDM Network provides the most complete picture of the number and characteristics of children with CP in the United States. The ADDM Network is unique in that its methods are population-based, which means that we look at information on thousands of children from diverse communities across the country. In 2008, the ADDM Network sites that tracked CP represented approximately 4% of 8-year-olds in the United States. Because of the size of our population of children with CP, we are able to look at more than just the number of children with CP. We are also able to examine characteristics of children with CP and compare groups (such as boys and girls or White children and Black children).

5. CP Daily Living: I have heard people state that none of the issues which cause CP can be prevented, and the ones that can are already being studied by other fields (such as stroke and prematurity). What do you think about these statements?

Dr. Marshalynn Yeargin-Allsopp: In most cases, we don’t know why children develop CP. Some preventable risks for CP have been identified. For example, babies with severe jaundice can develop kernicterus, which is a condition that occurs when severe jaundice goes untreated for too long is a known cause of CP.  However, severe jaundice can be treated with special lights (phototherapy) and perhaps blood exchanges to stop the development of kernicterus. Similarly, routine vaccination of babies prevents many cases of meningitis, another known cause of brain damage that can, in turn, cause CP. Making sure that children are properly buckled in car seats or booster seats can help prevent head injury during a car accident; head injury is another cause of CP.  CDC’s ongoing CP monitoring efforts provide the opportunity to examine trends over time in the number and characteristics of children with CP for whom the cause of their CP occurred after the first month of life and may have been prevented.  This enables us to identify areas for additional prevention efforts as well as to evaluate whether current prevention efforts may  be contributing to decreases the number of children with CP overall.

6. CP Daily Living: Are there ways for the CP community to collaborate and extend or join studies in order to determine what links may exist between what other fields are studying and their condition to the development of CP such as prematurity?

Dr. Marshalynn Yeargin-Allsopp: There are many opportunities for collaboration between those studying CP and those studying other conditions. For example, in CDC’s most recent report, we found that many of the children with CP had co-occurring epilepsy and autism spectrum disorder. Of particular note, we found that about 7% of children identified with CP also had autism spectrum disorder. This means that autism spectrum disorder order is more common among children with CP than among their peers without CP. Information about the co-occurrence of CP and other conditions, such as autism spectrum disorder, can help direct research into shared risks and causes.

7. CP Daily Living: How does the CDC partner with private agencies and researchers to accomplish their goals and mission?

Dr. Marshalynn Yeargin-Allsopp: Partnerships are essential to CDC’s work in CP. At the local level, we partner with local organizations in each of the four U.S. communities where CDC tracks CP. Without the ongoing support of these organizations, which range from public schools to pediatric specialty clinics, we would not be able to collect this important information on the number and characteristics of children with CP. At the state and national level, we also partner with organizations that provide services to and advocate on behalf of children, families, and adults living with CP. These partners help us connect with families and help us remember that tracking is about more than just the numbers—it’s about individual children and families that need support. Our national partners also help move our data to action and use it to support their own efforts.

8. CP Daily Living: One of our followers commented that she didn’t understand why CDC would focus at all on the CP community since it isn’t a disease. Can you comment on this?

Dr. Marshalynn Yeargin-Allsopp: The mission of the CDC’s National Center on Birth Defects and Developmental Disabilities is to promote the health of babies, children, and adults and enhance the potential for full, productive living. Whether one considers CP a “condition” or “disease”, our ultimate goal to help parents, doctors, educators, and other key stakeholders understand more about CP so that improvements can be made to help children and families affected by CP.

 Additional resources:
Learn more about CDC’s most recent findings on CP

Read the 2013 ADDM Network Community Report on CP

Listen to a podcast in which Dr. Marshalyn Yeargin-Allsopp describes the causes, preventions, types, and sign and symptoms of CP

Download a free checklist to help track your child’s developmental milestones

Meeting the practical and emotional challenges of Maya’s growth

Over the past few weeks supporting Maya has brought us some new physical challenges and unfamiliar types of back pain. Usually changes like this signal the need to adjust our daily routine and our approach to lifting and supporting Maya. Sometimes it even means we need different supportive equipment for her to better access her environment and to support her learning. We’ve been through several cycles like this over the last few years where we must evaluate Maya’s growth and development in multiple areas and how we may best support her. And now, after going through these evaluation processes more than a few times, I have seen a pattern emerge in the way I process these realizations.

During a typical day, I make a point of trying to keep my main focus on Maya’s strengths and the things she is able to do, while in the background of my mind, I think about the things she has trouble with and how to gently open up the next developmental steps for her. This approach helps to keep me focused and mostly in a place of acceptance rather than grief. But when I start thinking through better strategies for lifting, transferring, and ensuring Maya is doing whatever she can to help us to help her, I often find myself stepping into uncomfortable emotional territory.

Maya’s growth spurts and the resultant changes in my and my husband’s body (like back pain) demand practical analysis and detailed decision making, and often catapult me out of my status quo emotional space. While immersing my thoughts in whether we need different equipment supports and evaluating Maya’s capabilities, painful feelings quickly rise to the surface of my mind. I find myself looking in great detail at what she is not able to do and focusing on what I hoped she might be doing at this point in time. I then have trouble keeping my focus on acceptance, and end up in a place of anxiety and grief. Maya’s birthdays often have a similar affect on me because these are marked moments of time where I step off of the train and pause to look backwards and forwards to see where she is in her development.

The upside to going through this cycle multiple times is that I have learned how to get back on track and work through these difficult feelings. It has not been easy. As Maya continues to grow, we learn more about how her early brain injury affects her body. Each year or growth spurt brings new realizations. As I have written many times before, it’s very difficult for the parents of a child who has CP to come to a place of acceptance because we continue to have to learn about what it is we are accepting.

Many of you may be wondering how I get back into my most comfortable emotional space once I have crossed into a place of grieving. I don’t know that I have a concrete answer for that. The best information I can offer is that I don’t allow my grief to spiral down into a cycle of  “can’t do’s” and I try not to add additional thoughts to the surfacing difficult emotions. For instance, if I am upset because Maya has difficulty sitting up, I am not going to actively think about something else upsetting such as wishing that she could drink out of a cup without a straw. I also know now that if I get stuck thinking about what Maya can’t do, it negatively impacts her in ways I would never intend. By keeping my thoughts focused on the present and moving her forward at her own pace, I naturally see much more of what IS working for her. The seemingly small things get celebrated. If I were constantly thinking about what she wasn’t doing, I would probably miss many of those victories that she gets excited about and has worked so hard for.

While we have developmental timelines for “typically” developing children, we don’t have them for children with CP. They are not as well studied, documented, or shared. As parents of children with special needs, our children have their own growth timeline and emotions uniquely associated with their challenges. These developmental uncertainties present themselves at unexpected times and impact family dynamics and a parent’s emotions in confusing ways. At least they do for us.

Although as parents we often face what feels like a disorganized and unexpected developmental path in raising a child with CP, I am discovering that we can identify patterns or rhythms within our own situations. These emerging rhythms are helping me figure out when to strategically plan and how to make sense of my own feelings and reactions, so that every next step does not feel like new territory.  As we work through this next phase of identifying what changes in our environment may be needed to support Maya and our family, I find some comfort in realizing I have been in this emotional space before and have made the needed adjustments. I feel like I picked up another piece of our puzzle and I am cultivating the acceptance to go along with it. And you know what, as Maya continues to grow physically, emotionally, and cognitively, we will continue to move through these transitions. And it’s 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 make sure that those strengths can come forward and can be shared with the world.

P.S-

So this latest cycle led us to see that we needed a better way to get Maya in and out of bed. Thanks to a friend who has a young son with CP, we got the idea of purchasing an adjustable bed for her. It’s been so helpful especially for the middle of the night bathroom trips! And she loves helping to sit herself up using the remote. Sometimes a little too much! 🙂