Maya’s Dad took off his emotional blinders today

We were helping Maya with her homework last night. It was hard for her and we have to continuously find creative ways of helping her learn and process information in meaningful ways. Many kids struggle with homework and learning so I take it in stride and focus on finding her learning path. But something finally got to her dad in the mix of this and he said to me this morning, “I hate to see her struggle.” “So many things are hard for her.”

It’s rare that Maya’s father takes the emotional blinders off. I am glad he took a few minutes to sit with his feelings and share them with me. We both try to maintain our focus on what Maya CAN do and work toward HER next step. But yes, on occasion our feelings of pain and sadness about how Maya struggles must come out so that we can move past them. Sure, Maya CAN do many things, but she does struggle to accomplish many daily tasks most people take for granted. No matter what types of challenges our children face in life (large and small) parents can’t help but to feel compelled to want to take the struggle and pain away. It’s our instinct isn’t it? Struggling to achieve or overcome obstacles is healthy and a part of moving toward a strong sense of self. Ensuring that a child with a disability has the opportunity to feel successful is the challenge we continue to work on as Maya’s parents.

The Bigger Issue about the FDA Warning Against HBOT Treatment for Cerebral Palsy

I  came across an article today on Disability Scoop about the FDA issuing a warning to consumers regarding the use of hyperbaric oxygen therapy for Autism and Cerebral Palsy.

Here is the concern stated by Nayan Patel of the FDA:

“Patients may incorrectly believe that these devices have been proven safe and effective for uses not cleared by the FDA, which may cause them to delay or forgo proven medical therapies,” said Nayan Patel, a biomedical engineer at the FDA’s anesthesiology devices branch. “In doing so, they may experience a lack of improvement and/or worsening of their existing conditions.”

I am a firm proponent of research based treatment for many reasons. I believe society needs a grounding point for gauging safety risks and efficacy of treatments. Following protocols to move treatments into the main stream and working to have them covered by insurance will also make them accessible to the broader population.

Here is the rub. The CP community doesn’t have robust funding for research. What is currently considered conventional treatment for CP doesn’t even have a clear body of research evidence behind it that proves its efficacy. During the CP Alliance webinar on stem cells back in May of 2013 Dr. Iona Novak stated that current therapies for CP have an estimated 4-10% gain or improvement for the individual. So, we don’t really have much at our fingertips to help our children, or for adults to help themselves. Parents of children with cerebral palsy are often forced to make difficult decisions and I propose many try unproven treatments based on empirical evidence and word of mouth. The alternative is often to stand by feeling helpless and hopeless.

If the FDA is so critically concerned about the use of alternative treatments, they might consider that at least when it comes to cerebral palsy, that most everything is “alternative” and/or “off-label use” for this community. I agree this needs to change.

This is why I am working to bring support and attention to cerebral palsy. We need funding for research to explore new treatments and discover what is safe, effective, and possible. CP doesn’t have to be a maintenance condition, nor should parents and adults with CP feel compelled to put their children or themselves at risk physically and perhaps financially trying to find ways of improving this disorder. The real issue for CP is that the advocacy and financial support for research hasn’t been there and we need to change this. We also need agencies such as the FDA to connect with other agencies and organizations to understand and work toward making these changes.

Parents and individuals will often explore alternative treatments and possibilities when they don’t see the answers or possibilities emerging to help them in the way they expect. It’s happened since the beginning of time. All researched and proven treatments once started out as a notion, idea, or possibility and usually involved people taking risks upon themselves to see what possibilities or potentials were out there that may help them. Have we tried alternative therapies with Maya? Yes, we have. And evaluating alternative options and their potential risks is stressful, confusing, and one of the greatest challenges we have faced in trying to help our daughter.

I believe and will work toward building support for this community and bringing awareness to larger issues such as what I present here. Potential treatments need to be studied and evaluated formally in our population (and it’s categories) so that scientists can determine with as much clarity as possible what we know, what we don’t know, and how we know it. Over time more focus and support on the cerebral palsy community will hopefully lessen the intellectual and often financial burden facing many parents and adults with CP today who continue to wander through unchartered territory looking for a way to make a better life for their child or themselves.

BTW, isn’t interesting how they don’t mention cerebral palsy in the title of this article?

-Michele, CP Daily Living

CP Daily Living’s Road Travel Essentials

Our family loves to travel. Getting away rejuvenates us and we rely upon our family trips for that much needed change of scenery and break from routine. Sure there are surprises we stumble upon that require creative troubleshooting. Facing new accessibility challenges bring out different emotions for all of us yet, in spite of these issues, we find we need to get away as much as possible. It has taken us a few years to get the hang of what basics we need to travel comfortably with Maya (and to find them). Since we just returned from a road trip I thought I would share the list of items we have compiled over time to make our trips easier. Perhaps you will get some ideas from this list or share some of your own. Although our daughter has cerebral palsy, we hope this list may also offer ideas that are helpful for any family who has a child with special needs.

Recaro Monza car seat by Thomashilfen with swivel plate accessory (swivel plate is sold separately): This is our current alternative to having a wheelchair accessible vehicle. The swivel plate makes transfers so much easier now that Maya has gotten taller and heavier (my back thanks this company every day).

Tray for Maya’s car seat: Having a tray to use in the car is very helpful. There are some portable trays for travel you may wish to try or research so that you may not have to wonder whether your car seat comes with this option (and spending lots of extra money for it). Maya’s first comment about the Thomashilfen’s Recaro Monza tray accessory was, “Why doesn’t it come with a cup holder?” It was a good question and we found a few other issues with it. It isn’t easily cleaned, and until recently Maya wasn’t tall enough to use it (despite it only coming in one size). We used it on our most recent trip with moderate success. I have given Thomashilfen’s owner feedback about the tray and they have been interested in exploring ways of improving it moving forward (all changes require test crashing).

Rooftop carrier:  We bought ours through Craig’s list but it originally came from Sears. It’s given us an economical way to add storage space to our small SUV. Just remember to separate your essentials so that the person loading (ahem to Maya’s dad who always loads the top carrier with 2-3 essentials for the day of travel) doesn’t put anything up top that you may need during your ride.

Maya’s wheelchair (by Ki mobility) w/tray accessory: Regardless of which wheelchair your child has we were adamant that the one we chose for Maya must have an option for a tray. It’s a huge help when eating at places where her wheelchair doesn’t allow her to reach the table, it also is allows her to have another workspace without transferring her to another seat.

Dyno all-terrain stroller:  Our all-terrain stroller is one of the most beloved equipment purchases we have ever made. It has opened up a whole new list of activities/scenery for Maya and our family to experience together. We can take her on the beach, pushing through the Carolina dunes without stressing over whether to rent a separate beach stroller (if they even have them), and we can now take her on hiking trails. One of the reasons we chose the Dyno is because it was relatively lightweight and folded which allowed us to easily store and transport it in our car. It also has a dynamic seat (it moves with Maya when her spasticity kicks in) which supports Maya well. It was an expensive investment but we saved some money by purchasing a demo model. Also, we felt confident with this purchase since the Dyno has been designed to offer lots of room for growth. Depending on your child’s positioning needs and abilities you may consider having an all-terrain chair for use full-time, rather than having to purchase two different chairs. You may wish to review a blog post I wrote about our first wheelchair purchase which includes information about what mistakes we made and what we learned going forward. 

Special Tomato Soft Touch Sitter: A lightweight and portable supportive seat for Maya to use during mealtimes. We don’t bring it to restaurants because it is quite large, but it’s been very helpful to use when we stay in someone else’s home, condo, or hotel room, allowing Maya to access the same table where everyone else is dining or playing games etc.

Toilet chair: They don’t make the Rifton one we use anymore, but I wish they did (this one by Leckey is similar). It’s simple, it works, and Maya is so comfortable in it. The one downside is that we have to clean it out, but it makes transferring her to the toilet easier because it sits low to the ground. We do have the Rifton Blue Wave  which is very easy to travel with, but, Maya has trouble positioning on it as well as she positions on the old style Rifton where her feet touch the floor.

Kids adirondack chair: a conventional outdoor chair Maya’s preschool teacher found for her at Toys R Us. I have never seen it online. It isn’t perfect, but it works better than anything else we have tried that sits close to the ground and it can be used outside. While putting this post together I came across a few equipment pages and one company that suggest using your child’s bathing chair as a floor sitter (outside too). I guess it would depend on the type of chair. I am pretty picky about keeping things clean, but it certainly is a way to minimize the equipment you bring.

Bathing chair: The model we use for travel is no longer made but it is very similar to the Minnow Bath Support by Snug Seat. At home we use another bath chair that is bigger and not as easy to travel with (I bought the Minnow first hoping it would work for travel and home). It wasn’t until recently that Maya was able to use the bath chair similar to the Minnow. Her pelvis used to slide forward and we had to constantly adjust her while we bathed her. When she was younger we were able to use bathing pillows and/or get our bathing suits on and get into the bath tub with her to bathe her. If you are in the market for a bath chair for your child and like to travel you may consider looking at the TubDipper. It’s very compact and lightweight. It may not work in all situations since using it requires a certain tub ledge width. We did not purchase one because we wanted Maya to have the opportunity to be more upright when we bath her and the TubDipper doesn’t allow for that. Like the Minnow it can be hung on a hook for easy storage.

Special Tomato Potty Seat with storage bag: After Maya outgrew the toddler toilet seats, I began looking for something we could use at home and when we travel that would help keep her from sliding into the toilet. This toilet seat has helped her feel more relaxed therefore making it easier to go to the bathroom. It doesn’t offer her all of the support she needs but it is a helpful intermediary step between having nothing at all, and having her more elaborate positioning seat which is not easily taken in and out of bathrooms.

Hand sanitizer, flushable wipes, and mini Lysol stored in the outside pouch of our Special Tomato Potty Seat bag

Cool Gear Travel Potty: When Maya was younger we used to carry the Cool Gear Potty Seat. It had some quirks (it was sometimes hard to open the storage compartments) but it worked really well for a while and was so easy to transport. You could even use it in the back of a minivan.

Custom changing pad or Multi-use Pads: Great for changing your child on the run. We have a custom made cushioned pad from the seller linked above, and have purchased some extra large plain white changing pads with wipeable backings from Babies R Us. At 27×36 and $11.99 (at the time of this post) for two the multi-use pads, these pads are economical and large enough for use well beyond the intended baby and toddler years. We keep them in every bathroom in our home. They offer a clean and dry area for getting Maya dressed after using the bathroom, or for dressing her after bathing or swimming.

Outdoor wipeable and/or zippable picnic blanket: Many retailers sell these. I think I found ours at Target. They are great for rest stops or relaxing outside and by the beach.

KidCompanions Chewelry: Maya has trouble sitting still. She usually needs to have something in her hands to fidget with in order to feel relaxed. For the past few years she has been in the habit of picking her gums. She relies on her Chewelry to help her overcome this challenge especially during long car rides.

Sea-Bands: Can I say unequivocally that these help Maya beyond the placebo effect? Nope. But, we have used them since she was an infant and now that she is older she is adamant that they often help her overcome motion sickness in the car. She won’t go for an extended ride in the car without them. We bought ours at our local pharmacy.

Wet/dry bag: We started ordering these bags when we were using cloth diapers with Maya. One day I asked the shop owner to make us a wet/dry bag that attaches to the back of Maya’s wheelchair. We are hooked on them now. We can bring extra clothes and have two compartments to separate her dry clothes from her dirty or wet clothing.

Snacks for constipation: I recently heard about the blog “My Whole Food Life” from a close friend who is making changes to her family’s diet. It turns out that several of these blogger’s snack bars and “cookie dough” bite recipes are one of the most powerful constipation remedies we have found for Maya. Having these snacks in addition to lunch or breakfast made with Ezekiel bread, keeps us all going. In the past we used Fruiteze and it was very easy to bring on the road. However, Maya prefers the taste of the snacks I prepare from this blog to eating the Fruiteze.

Aprons-A friend made Maya several adorable aprons after seeing my post about a children’s apron we were using as an alternative to a bib. They have been wonderful helpers that allow Maya to feel comfortable exercising her fine motor skills at the dinner table without messing up her clothes. You can find kid’s aprons all over the internet and if you want something special you may wish to find a seller on Etsy to make some custom for your child.

Squeezie balls: When Maya gets angry she likes to have a squeezie ball nearby. Be mindful of your child’s age and/or whether they put things in their mouth before deciding what to purchase.

Small cooler for medical supplies and/or a medical supply bag: This approach helps us keep medicines at the right temperature (some of ours require refrigeration) and handy for finding them quickly while we are on the road.

Wacky noodle and a few sheets of rubber grip style shelving paper (not slick): We have learned from therapists the many creative ways of using wacky noodles in a pinch to help with positioning. Also, we have found many uses for the rubber style shelving paper including keeping Maya’s dishes from sliding while she is eating.

Unicorn Dream Lites Pillow: Maya loves all things that glow in the dark, and this pillow projects stars on the ceiling so that we have a traveling star show.

“Wall music”: Maya’s name for the HomeMedics Sound Spa Lullaby machine. I don’t know why she is obsessed with this but she loves to have it on every night along with her stars. It projects pictures on the wall or ceiling and plays music/soothing sounds as well.

Maya’s personal music play list: Maya has always loved music. She can sit in her room for an hour just listening to the radio and playing with one of our dogs. She is very particular about what she will listen to and for several years she has looked forward to her dad or grandpa making her a personalized music play list for traveling and/or bed time.

Video monitor: Maya has seizures and when we travel we may not always stay in the same room with her, or she goes to bed before us. Our video monitor helps us to be able to keep an eye on her. We purchased one by Summer Infant similar to what is linked here. I am sure there are many good options on the market.

Bed cover for accidents: I was so tired of stripping Maya’s sheets in the middle of the night. I found a cover for on top of Maya’s bed sheets and it’s made managing accidents much easier. Although we purchased the one linked and like that it tucks in under the mattress, there are others on the market that are larger and less expensive such as this I found on Amazon.

Bed rails: We have two kinds we have used. One set is called Bed Bug Bumpers. They are made of foam, go under the fitted sheet, and when we have travelled by plane they fit in our suitcases or I shipped them to our destination. We also use a set by Summer Infant. The part that slides between the mattress and the box spring folds up so we can usually slide them on the sides of the trunk when we pack the car. There also have been a few times we placed a mattress on the floor for her and there are some kids and adult inflatable mattresses that you can travel with as well.

Window shade: Great for when the sun is in Maya’s eyes and she has had difficulty moving her head to avoid it. It’s also great for when your child wants to nap since they block the sun or lights from coming through the window.

Essential stuffed animals: We bring a few of Maya’s most current favorites. They are Ponyo, purple bunny, and Lena Luna the lamb. Maya added Luna to Lena’s name (the company gave her the name Lena) because she liked Luna better. We kept  the name Lena as well so that Lena Luna would know we were talking to her.

Reusable no spill cups with straws: You can usually find these in the grocery store. Maya is not able to drink out of a cup without a straw. She also has difficulty holding onto cups so these are great since they come with a lid and they don’t usually spill (put the straw in after you put the lid on to avoid spills or leaks).

Flexible straws: Most restaurants don’t have flexible straws and in the car we use them (since we have to wash the re-useable ones). It makes it easier for Maya to focus on holding the cup rather than putting additional energy into positioning the cup just right so that she can drink out of the straight straw.

Gyro bowl: some parents love them and others find them less than helpful. For Maya, she has the hang of holding it and it gives her some extra protection from having her goodies spill in the car. Some parents report that their children figure out how to dump everything out anyway. There are other types of snack holders that help prevent spills but Maya has a harder time negotiating anything with a cover.

Paper towels and wipes: for the occasional spill or messy hands in the car

Ipad: Sometimes Maya watches movies from her seat (the Monza has its own audio speakers and plug), but it’s also great for her to play games and educational programs on the go.

Glow sticks: Again Maya loves anything that glows in the dark and can spend an hour playing with a glow stick.

Maya’s play doctor kit: Maya loves to play doctor. She can hear a bruise coming to the surface of your skin on the other side of the house. Her doctor’s kits gives her hours of fun and it’s small and portable.

Bubbles: On occasion Maya is bored when we have down time on vacation. She isn’t much of a television watcher. So, for less than a dollar Maya will squeal with delight when she or someone else blows bubbles.

Extra blanket: Despite always being warm Maya has surprised me over time by requesting a blanket for longer car trips. She says she gets cold in the car and I think it helps her to feel more comfortable as well.

If we rent a mini-van for a trip Maya’s Rifton trike comes along too.

Finally…we always bring a pain reliever with us. Those frequent transfers in unfamiliar and untidy public bathrooms are a recipe for a sore back.

What are some of your favorite road travel essentials?

When we return from our trips we will now be using the new website Accessible Travel Reviews website started by another family who loves to travel and has a daughter who is a wheelchair user with cerebral palsy as well.

You may wish to visit other parts of the CP Daily Living website related to travel. We offer information and insight about some of our practical experiences related to traveling as well as related resources:

Related CP Daily Living website sections:


Using Public Restrooms

Accessible/Adaptive Activities & Sports

The Struggle to Stop Viewing Our Children Through Clinical Eyes

It’s so easy for us parents to become lost in thinking about how our children compare with their same aged peers. From an early age, children at risk for developmental delays/disabilities are tested, categorized, and monitored. There are some good reasons for doing this such as identifying and tracking areas that may need support. But, there are also some potentially negative outcomes as well.

While seeing our children constantly evaluated and measured by medical and educational professionals, we can easily become accustomed to viewing our children through the same clinical and comparative lenses. We often become stuck looking at what isn’t working for our child instead of appreciating and nurturing what is. It’s hard for parents to switch from achievement based goals and hearing what needs to be done to support our child’s development, to simply being with him/her without these thoughts.

Over time Maya’s father and I have focused on setting boundaries that help us to define when and where we will approach Maya with “clinical” eyes and “critical” thinking. Maintaining these boundaries are harder some days than others. However, this strategy has helped us move further away from the tendency to persistently evaluate Maya. Now I don’t dwell too long or intensely on what she can’t do or what she may or may not do later. I try to leave the critical thinking and clinical type of analyses solely for planning her therapy schedule. The rest of the time I focus on enjoying and recognizing the spunky, sensitive, determined and insightful person Maya has become.



Update on Stem Cells & Cerebral Palsy: Summary of the CP Alliance Webcast

The following is a summary of the May 21st 2013 Webcast “Stem Cells & Cerebral Palsy: The Promise and the Progress”, presented by Cerebral Palsy Alliance in Australia: 

Main topics to be covered:

What does the future hold to prevent, treat, or even cure CP?

What is fact, fiction, or somewhere in between?

What has been achieved and what may be achieved soon?

Summary of Dr. Iona Novak’s presentation-Head of Research at CP Alliance in Australia

Why are researchers interested in exploring stem cells for CP? 

We need better/more effective treatment for CP and it’s related conditions. Current interventions and treatments offer typically only 4-10% gain or improvement. According to world wide CP registers we have the following statistics related to CP and some of its secondary associated conditions:

1 in 3 cannot walk, 1 in 4 cannot talk, 1 in 4 have epilepsy, 3 in 4 are in pain and some cannot communicate it, 1 in 3 have hip displacement, 1 in 10 are blind, 1 in 5 have a sleep disorder.

One of the most under-recognized problems with CP is pain and this is an aspect of CP that they would like to do something about. Some people with CP can’t find relief and/or talk about the pain they feel.

Summary of Dr. Megan Munsie’s presentation-Head of Education, Ethics, Law & Community Awareness Unit at the ARC funded Stem Cells Australia Initiative

Our body is made up of over 200 types of cells. The nucleus of the cell tells it what to do and codes for genes. Different cells of the body look and behave differently. Different cells express different genes.

What is a stem cell?

A primitive cell that has the capacity to grow into one or more specialized cells. It has the capacity to grow into a copy of itself. It can repopulate tissue. Stem cells are being used to understand more about disease. Researchers are using them in the lab and with different drugs to see where they may be able to make a difference.

What is a blood stem cell?

Blood stem cells are the most well known and come from the bone marrow in the long bones. Many people have heard of bone marrow transplants where cells that are not functioning correctly are replaced with new ones. Can we use blood stem cells and their applications as an example from which to apply similar principals to other types of stem cells? It may be a bit more complicated than what we can currently do with bone marrow, but it’s a concept researchers can potentially begin to explore.

What are MSC’s?

Also found in the bone marrow they are a companion cell to blood stem cells and they can dampen potentially harmful inflammatory immune responses.

What is cord blood?

Used since the 1980s, it’s isolated from the placenta and can be processed and stored for later use. Many different types of cells can come from cord blood. At the moment the only proven stem cell treatments are for diseases of the blood and immune system, some skin graft treatments and some causes of blindness.

All of the organs of the body have stem cells even if the organs are not inherently regenerative. The is a new concept. How do we recruit cells from different organs and get them into activity? This is a big area of research!

What are embryonic stem cells?

Scientists can grow these since discovery of them in the late 90s. They can grow them into lots of different types of stem cells. Embryonic cells have a large capacity for change which makes them unique. Researchers are just starting to harness their potential.

What are IPS cells?

Discovered in 2007 by a Japanese researcher who received the Nobel Prize last year for his discovery. He was able to change four genes in a skin cell and turn it into a stem cell with pluripotent (can differentiate into many different types of cells) characteristics. The Japanese government is investing lots of money in stem cell research now.

There are different types of stem cells that are beginning to be tested in clinical trials throughout the world.

Dr. Munsie cautions people about using Google when looking for information about stem cell treatments. She encourages people to discuss what they find with their medical professionals:

It’s tough to work out which sites are discussing clinical trials and which are treating people. Stem cells have enormous potential but testing for safety and efficacy needs to be properly established first. Dr. Munsie is very wary of clinics offering to treat people with a wide range of problems and complexity using one approach. She cautions consumers to think twice, and go to your doctors who don’t have a vested interest in selling an expensive product.

Dr. Euan M. Wallace-Director of the Ritchie Centre and the Carl Wood Chair of Obstetrics and Gynecology at Monash University.

Dr. Wallace limited his discussion to cord blood cells and CP:

1. According to Dr. Wallace, experimental data suggests strongly that giving cord blood cells to children at very high risk for developing CP may prevent them from developing it. Clinical trials are underway around the world that are looking at this possibility now.

2. What happen when you give cord blood to children who already have CP (in order to treat them)? No animal studies have investigated the use of cord blood where there is an established early brain injury (and the animal studies typically precede the human studies).

Historical use of cord blood:

Twenty-five years ago Matt Farrow was a patient of Dr. Joanne Kurtzberg, current Chief Scientific Officer and Medical Director at Robertson Cell and Translational Therapy Program at Duke University. Matt was five and had Fanconi’s Anemia which at the time people typically died from before the age of 10. Dr. Kurtzberg collaborated  with a researcher and physician in Paris so that Matt could receive the first cord blood transplant. It cured him and saved his life. He is now 30 years old and married with his own children.

At the time Dr. Kurtzberg and the doctors she collaborated with thought that Matt Farrow had a 10% chance of being cured of that disease and they still did it. Today over 30,000 people have received cord blood transplants for blood disorders and blood cancer. Dr. Wallace would like to see researchers put effort and resources into exploring stem cells for CP. He wants to see what the results would be. **More info from CP Daily: Dr. Kurtzberg is currently conducting a clinical trial in the US on the use of cord blood in CP. The trial is expected to be concluded in 2014. Dr. Wallace definitely is pushing for Australia to start their own clinical trials as well.

Return to summary of Dr. Wallace’s presentation:

There was a recent South Korean trial using donated cord blood that was published in a journal called Stem Cells. There were 90 children who participated. There were three groups (included in this trial were also the use of EPO and cyclosporine) within the trial and all groups improved . There were some questions as to whether all three groups progressed because of the intensive rehab and/or because the children were getting older as the trial progressed. The biggest improvement was in the 31 children who received cord blood. Children less than 3 had the best reported improvement. The closer the blood match of the participant and donor, the better the outcomes.

There were no dramatic changes in the Korean clinical trial but Dr. Wallace believes it showed sufficient improvement for launching a national trial in Australia.

Summary of Stephen Archer’s presentation-Parent contributor who pursued stem cell treatment at Duke University

Mr. Archer has a son Zach and at the time they pursued getting him a cord blood transplant he was 5.

Zach had a stroke (of unknown cause) which caused his CP. He has right-sided hemiplegia. He has muscle spasticity in his lower leg and upper right arm. They began using serial casting and Botox at an early age. Zach started having seizures at 2 years old. In five years anti-convulsants had not had much effect and it was not uncommon for him to have up to 100 seizures per day. Epilepsy was thought to be unrelated to his stroke when doctors evaluated him for surgery (to try and address his seizures) so the surgeons would not proceed. The family kept looking for other possibilities/treatments.

They investigated the use of cord blood but couldn’t get Zach infused with his own in Australia. They were able to arrange to take his cord blood to Duke University where they asked Dr. Kurtzberg to provide one treatment not associated with a clinical trial (Mr. Archer mentions the challenge of having to take multiple trips overseas if they did participate in the US clinical trial). *Note from CP Daily Living: The clinical trial taking place at Duke includes three visits over a three year period but only one of those visits includes the cord blood transfusion. The family isn’t told which visit includes the administration of the cord blood. If the Archers participated in the clinical trial it would have been free (except for travel expenses) versus the $40,000 (which included travel expenditures) they spent to have the transfusion done outside of the trial.

Outcome: Treatment was November 2010 and they have not seen significant progress or changes. Mr. Archer doesn’t think the treatment was a “failure”. He felt they had to give this a try especially since it was considered by their consulting doctors to be a “no harm” scenario for their son. He said he would do it all over again despite the expense and outcome.

*Despite Mr. Archer saying that their consulting doctors felt there was “no harm” in their son receiving a transfusion of his own cord blood, I personally would like more information about what has or has not been studied or recorded in the literature with respect to autologous cord blood transfusion and potential risks.

If you would like to watch a recording of the live Webcast you may view it by clicking here.



Cerebral Palsy: An umbrella term unifying our community

I have been studying the US and international CP community intensely over the last year. I have read CP literature and I have spoken with doctors, leaders of CP organizations, individuals with CP and many parents. While analyzing the gaps in our US CP community advocacy, I have repeatedly been told that the different presentations of CP may explain the recent historical lack of fervor in CP advocacy efforts.

Could it really be true that the CP community cannot rally around a CP diagnosis and advocate with the same unity as other disease communities just because CP has many different presentations? I really question the validity of this. Yes, to a degree the way that CP affects the individual and a family may influence their desire and ability to advocate. Some with mild CP may not care to advocate, and perhaps those families with children who require more complex attention, may feel too exhausted too advocate. This is understandable. Not everyone is going to be able to advocate, and certainly not all of the time.

However, if we look further, I propose that the CP community isn’t so different from other communities doing advocacy work. Many diseases have multiple mechanisms of origin/causation and presentations of their conditions yet rally around a generic diagnosis. Cancer is one obvious example. It affects individuals in thousands of different ways ranging from rapidly terminal to easily curable. Still we have general cancer organizations such as the American Cancer Society and as the effort has gained further support, more cancer organizations focusing on cancer subtypes have emerged. We may see the same thing happen with CP one day.

How about Traumatic Brain Injury (TBI)? This is another well-organized and well-supported group (further enhanced by military support). TBI likens easily to the CP community. TBI, like CP, is a catchall term with even more variability than CP. In TBI the presentation involves any part of the brain, and has multiple levels of severity from a mild concussion to severe TBI that may lead to death. Still, this group is effective in their advocacy efforts and well supported financially.

I bring this up so that we don’t forget the possibilities and the potential power of our community. Sure, we may find down the road that we have sub-types of CP, but for now, the more we can gather, organize, and have our population studied and financially supported, the more we can learn. In order to inspire change through donations from the private sector, or to affect policy decisions and funding at a national level, we need to make some noise. Our silence tells the world that we are satisfied with our current models, support, and research. This is not the case.

When you see me sharing general information about cerebral palsy or opportunities to give to our community, call a political leader, or send an e-mail, join me in spreading the word and propelling our community forward. I see many of you starting to do this. I feel the momentum building and the organization of our community emerging. Let’s continue to join together and focus on what we have in common so that we can create change.

-Michele, CP Daily Living

How do we respectfully write about people with Cerebral Palsy?


Recently, I posted an article on our facebook page about a young comedian, Jack Carroll, who has cerebral palsy and auditioned for the show Britain’s Got Talent. In the article, Jack was introduced as a “sufferer of cerebral palsy.” Beyond the content presented in the article, a discussion ensued on our facebook page about how language influences the perceptions of people with disabilities. There were a variety of perspectives presented from individuals with CP and parents of children with CP.

So what is the right way to respectfully talk about people with cerebral palsy or any other disability? I become increasingly challenged by this question both in person and in writing. Now that I am the parent of a child with a disability and the host of a website about cerebral palsy, the stakes are higher for me to get this “right”. And, I am finding that determining whether an article or speech respectfully describes a person with CP or any disability often lies in the subtleties of the description, not only the words used, but the intention behind the words.

I am reminded of a conversation I had with a very good friend of mine, Kelly. Her daughter has a genetic disorder and attended the same therapeutic preschool as Maya. The founder of the preschool was Dr. Leslie Meyer, an incredibly forward thinking and generous man whose vision for children with disabilities is still progressive within our local community almost 60 years later. He passed away a few years ago. One night Kelly and I were discussing the issue of language as it pertains to people with disabilities.  She said to me, “Michele, Dr. Meyer spoke to me about AK and he said, ‘Kelly she is doing good. She is doing real good. There is nothing worse than a spoiled retarded child.’”

Now, you may gasp in horror at hearing this statement, but consider the context. This is a man, an orthopedic surgeon, who dedicated a large part of his life to establishing a therapeutic preschool school in the 1950s for children with cerebral palsy. At the time his colleagues ridiculed him for thinking that children with CP could learn and should have a place where this would be possible. In the 1950s children with disabilities were not guaranteed an education, so rather than being in school most kids with CP stayed at home. Dr. Meyer was in his 80s when he passed away. It was part of his life’s work to support the CP community and he had the deepest respect for our children. He used the term “retarded” as a clinical reference because his generation of medical professionals used it that way. Had Kelly, or any other parent become distracted by his language faux pas, she would have missed out on the wisdom and love he was conveying. He was relaying the importance of setting boundaries and respecting children with disabilities by treating them with the same respect and guidance you would offer a typical child.

I feel terrible when friends, family and strangers struggle to find words not to offend Maya or me when they ask questions or discuss cerebral palsy. I want to encourage conversation, yet I wonder how many people avoid eye contact and conversation because they worry about not finding the words that won’t cause offense to our family. Sure, there are some well known blatant language offenders such as the “R” word that have been widely broadcast as conversational “no- nos”, but there is no layperson’s guide book of the most appropriate and respectful ways of navigating these conversations. Who you offend and how you offend them can vary from one individual or family to the next, regardless of your intention. How we evaluate the use and abuse of language to illustrate one’s intentions is a tricky matter.

In journalism I understand there is some professional guidance on the appropriate use of language, which, in the case of the article referenced above, may have been ignored. Perhaps in the mind of a journalist, describing someone as a “sufferer of a disorder or disease” makes for a more dramatic or more appealing story. When I saw this phrase I stopped reading because it bothered me but I wasn’t sure why. I tend to try and focus on the overall content being presented, but still, this phrase didn’t sit comfortably with me. After I finished the article, I thought about it more intensely. I decided that it wasn’t necessarily incorrect to say that people with cerebral palsy suffer from pain and other daily challenges. So what was it that made me feel awkward? I figured I would post the article and see if anyone else brought this issue forward, and what they had to say about it.

What I didn’t initially consider was the impact that repeated use of this language has on society’s perception of a particular population. As one parent guided me to see, describing someone as a sufferer connotes pity and victimization, two emotions I definitely don’t want people thinking when talking to or thinking about Maya. Compassion and understanding yes, but pity, no way.

As we navigate these tricky waters as a collective society, I imagine what constitutes offensive language will shift as our beliefs and use of language change. Once upon a time there was nothing inherently offensive about the “R” word. However, over time it was misused, abused, and intended to be insulting, and with that change, the word itself developed an offensive quality.

I think one of the most important aspects of using language that reflects our intentions is to check in with each other and ourselves about how we use language to express our ideas and feelings. If someone says something that hurts you, tell that person how you feel and why. Give that person a chance to understand and learn from what you see and perceive through his words. Not all people will have access to the current thinking about various disability terminology, and people may disagree on what they are, but at the very least I believe we need to get to the heart of what individuals and our collective society believe about people with disabilities/challenges. Maybe one day we will stop categorizing people for the purpose of describing them in general context and use these categories only to diagnose and treat the individual medically and to offer more helpful support/accommodations. Who knows what the future holds as our ideas and intentions shift.

When the timing is right dialogues about disability language may bring understanding, and push us to examine our intentions, ideas, and beliefs, so that we can continue to have language most accurately reflect what we mean. As individuals we all have places within us that are vulnerable depending on our personality, personal, philosophical, and cultural values. In addition, for people with cerebral palsy the degree of the disorder’s impact on their daily lives may affect their point of view. At the core of people’s sensitivity to the use of language about disabilities is the deep desire to feel accepted, respected, and loved.

As I read our followers’ comments below the article describing Jack Carroll as a “sufferer of cerebral palsy” I pushed myself to examine my beliefs, ideas and feelings about my daughter and other people who live with cerebral palsy. My thinking and my use of language shifted from that day. The change didn’t come from a desire to just be politically correct, but from having my beliefs change about the subject. Thankfully the parents and individuals involved in the discussion were kind enough to allow me to process all of this without ridiculing or judging me.


Dartania Emery, an adult living with CP, comments on the this same news article. Dartania felt strongly about the journalist referring to Jack Carroll as a “sufferer of cerebral palsy.” On our facebook page Dartania Emery has offered to host conversations, field questions, and offer insight about what it is like for her to live with cerebral palsy. She helps create understanding without judgment, opens herself up to the perspectives of parents that may contrast greatly from her own, and she isn’t afraid to ultimately share what she feels and believes. Thank you Dart!

Here is Dartania’s perspective:

This description really got me thinking about how and when one differentiates between sufferers of a disability versus people who live with the same disability. When people say that those of us with CP suffer from it, I get a little upset by it. Yes, I might suffer from the effects of having CP but, I’ve always seen myself as living with CP. My grandma taught me to never let the CP get to me. So, I’ve never complained about it. Like I said on CP Daily Living’s Facebook page, “everyone goes through pain – whether it be physical or emotional pain. Whether or not you let that pain consume you, is what makes you a sufferer of that particular pain.” A great majority of the other adults that I know who have CP, are in agreement with me that we don’t suffer from CP, we just live with it. I also take the wording of “CP sufferer” to task because I don’t like for people to feel sorry for me or, to treat me differently because I have CP. I want to be seen the same and treated the same as everyone else.


Maya Determines When to Talk About Having Cerebral Palsy

I learned something important on our recent trip to visit family and friends. In the last six months I have been struck by how open and jovial Maya is when talking to people about having cerebral palsy. Whereas she used to become angry and feel that everyone was staring at her, she has now moved through those feelings and ideas, and emerged with a new strategy. What I didn’t know until last week is that rather than telling people about her CP as a source of pride, she does it to try and prevent people from focusing on her disability.

I mentioned in a recent facebook post that we met a man named Don who sat next to Maya on the airplane. He thought she looked like a friendly flying companion and he had not flown on an airplane in twelve years. Maya was her chatty self and welcomed Don to our row. She gave him the details of traveling on the plane, her likes and dislikes, and all kinds of tidbits about herself that he intently listened to with a warm heart and smile. She even explained to him what kind of medicine she was taking as I took out her bottle of seizure medication. What struck me was that she didn’t mention anything to him about having cerebral palsy. This was unusual for her especially given the amount of time she had to chat with him. Often this is one of the first things she mentions to people.

I innocently questioned Maya about this and was loud enough that Don could hear. As the words left my mouth I immediately realized how foolish I had been. I had been so proud of her for taking the initiative to be open about having a disability, that I believe a part of me was trying to encourage her to do the same with Don. It was a source of pride for me that she understood and could explain to people that she had cerebral palsy and was accepting of this part of herself (at least for now). My heart sank when I saw her face and I knew immediately that I had made a mistake. I talked to her quietly for a few minutes about it. I messed up. I didn’t mean to, but I did. I never realized how discerning and strategic Maya was being in discussing her challenges with people. Plus, it just wasn’t appropriate for me to bring this up. On the airplane, she is in the rare position of not having any equipment or supports that make her appear different. Her look of disgust and embarrassment said it all. She was happy to be free to look like other kids for a rare moment and I took it away.

I apologized for the mistake I made and she immediately changed the subject. She forgives me, but I will never make this mistake again. I never realized how deeply she processed her surroundings, and was making strategic decisions to try to be more comfortable feeling different. She isn’t particularly proud of her CP, she just doesn’t want people staring or belaboring the issue, so she puts it out there to discuss right away.

I am so sorry Maya. Mommy goofed and I won’t do that again (although I am sure I will have many more things to apologize for). We are all learning how to cope in various ways, you as a kid with challenges, and me as your mom who wants to support and guide you in the best way possible. Sometimes I learn or take cues from you. Thank you for being patient with me.

Here is one of those wonderful moments where Maya is equipment free and enjoying just being a kid:

Maya’s “Cute Heaven”-An evening of multiple milestones

Maya thoroughly enjoyed herself last night. After seeing her second play, “Charlotte’s Web” a few months ago, she decided she wanted to give theatre-going another try and see “Rapunzel”. So, yesterday evening we headed to the theatre and as soon as we got into the building another parent asked Maya if she was excited. She said, “No, I am nervous.” Apparently the woman didn’t hear her or expected a different answer because the woman said, “Yes, it’s going to be great.” It’s hard for many people to understand how something like a play could overwhelm a person’s nervous system. Sensory integration seems to be an issue for many kids these days, but it definitely isn’t the norm. Maya has to prepare herself for an adventure like this. She is afraid when the lights go down, she has trouble following the quickly changing scenery, and the music and noise often startle her.

When I took her to her first play last year she barely paid attention. She looked around and focused mainly on what her friend beside her was doing. I tried to point out different parts of the stage scenery and help narrate what was going on, but she didn’t seem interested. Perhaps there was too much information for her to process at once. Fortunately, we are much better prepared now for the variety of responses Maya may have to new experiences: fear, boredom, being overwhelmed, screaming, etc.

We try not to fill ourselves with expectations when planning activities because it creates pressure for everyone. We do what we can to help Maya negotiate new experiences. However, it’s difficult to find the balance between helping her learn and experience being successful by moving through her fear, versus reinforcing it further. As she gets older we see Maya pushing herself to work through her nervous system sensitivities without our input. Sometimes she is able to navigate challenges on her own, but other times she ends up retreating from a circumstance feeling too overwhelmed to continue. We don’t always know which outcome is likely so each new activity requires collective patience, creativity and sensitivity.

We have found that on vacations (territory ripe with new experiences) it’s been her older cousin who has given her the courage to push through with success. Other times we have found ourselves in the middle of a tornado of emotions and overstimulation, where our words and intentions just add to the chaos she feels and expresses. In these cases it isn’t until much later or even the next day that Maya is able to piece together what she was feeling and discuss it with us. It’s like a storm that needs to pass in order for her to achieve any clarity.

With all of this background, you now can understand my joy as I watched Maya during the play last night. She not only listened to the dialogue and paid attention, but she also integrated the music, the plot, the sounds, her fears, her toileting, her hunger, her vision, her wheelchair, her tone, and on and on. I wanted to give her a standing ovation. At the end of the play she turned her wheelchair around full circle and started wheeling herself out of the theatre. In the last week she has been eager to try and push herself in her chair whenever possible. Gosh, have we come far from six months ago when everyone wondered if she would be able to propel a wheelchair!

After leaving the theatre we went to get Maya a sweet treat that she asked for several times during the play. We found a nearby coffee shop that also had a gift store. She said she wanted private time and wheeled herself away from us. As we both watched her I thought to myself that her body language said, “I got this one guys.” At one point when she crashed into something in the store she yelled to her father, “I’m OK Dad,” a clear signal that she knew he was watching and didn’t want him coming closer (we were watching her from a little distance away). She said she was in “cute heaven” because everything in the store was so cute and she wanted to stay there and enjoy it (alone). I think more than anything else she felt excited about being able to enjoy the play and her newly found freedom in moving through space without her parents’ interference. I can only imagine how wonderful that must feel to her. Keep going Maya; we are behind you, beside you, and we are here to guide you whenever you need us. We know it isn’t easy, but your rare blend of self-acceptance and self-confidence are leading you and us to new places.



Are CP advocacy efforts petering out because of confusion over which organizations to rally around?

Repost from Facebook post-April 13th, 2013

I am going to keep going with my thoughts and intention about bringing clarity about the US CP support/advocacy organizations. There will always be multiple organizations supporting a cause or trying to address a problem, but right now I am wondering if some of our private CP organizations can come together to begin to more effectively and efficiently mobilize our community to address some of the issues they are working to address separately (including CP Daily Living).

With lack of funds and support, the small list of organizations dedicated to CP research, funding and advocacy in the US, are struggling to meet their independent missions with a lot of muscle. Can they be more effective working in tandem on a regular basis? Can unifying their efforts bring our community together virtually and in person? Some of these discussions are underway which is exciting, but I want to ensure that for those of you who wish to add your voice, you have a space to do that. Some of the leaders of these organizations follow our page so certainly sharing your point of view here is helpful.

I personally see so many CP community issues that need to be addressed, including causation research, working on the language and approach to defining CP in the individual, lack of funding for advancing treatment, a need to create more standards of care specifically for CP (i.e the Botox article I shared the other day), addressing the needs of our adult CP population, addressing healthcare coverage gaps.

I want to get our community moving full speed ahead as efficiently and effectively as possible and it’s going to a lot of work to get us going because CP awareness and funding is needed.

Is a lack of understanding of independent missions or communication with families from some of these organizations part of the problem? Will pooling resources and working together help gather our community virtually and literally? Have parents and people with CP felt that they haven’t had an opportunity or know where to speak and with whom about these issues that affect their daily life? Besides RFTS I haven’t seen national organizations attempt to openly include input from parents, families, and people with CP as part of furthering the efforts of the greater CP community? Parents and families are a critical component of mobilizing change and support for disorders and other medical diagnoses. Cynthia has identified this critical component and brought it front and center to those people and organizations who were previously not focused on considering our input. Sure, RFTS focuses on the pediatric population, but her advocacy work impacts everyone with CP. She has been able to part the waters for other organizations to see the value in families, children, and adults with CP participating in a larger conversation.

At what point do we need to consider and make it our business to discuss what is and isn’t being done for people with CP and their families? I am making it our business today. You can begin by sharing your ideas or passing this post around and generating awareness and conversation. I see the value in getting some short-term projects going, but I also see the importance and necessity in getting smart about how we gather our small batch of funding resources and allocate them as a larger community. If we don’t discuss collaborative efforts as a community and enter into the conversation, we may end up with many tiny organizations continuously cropping up to address what they feel is independently important, but perhaps without the funding resources to effectively support any of those independent passions. I would like to see our community try and come together on what we largely can agree upon, and begin to organize our efforts so that we may be able to generate support for effectively addressing some of those issues.

Do you have thoughts or questions? Share them with everyone.