The smallest acts of kindness can make an entire day brighter. This was the case with Leah Carroll and her four-year-old son Malachi when a simple hello in Chick-fil-A from another family made the pair’s day. Malachi has Cerebral Palsy, which often means other children aren’t quite sure how to act around him even though Malachi loves making friends. That day in Chick-fil-A, two curious, young boys under the guidance of their mother approached him. After introductions, the three children began communicating happily amongst each other, and Leah was touched to see her son being treated with acceptance, kindness, and respect. She wrote an open letter on Facebook about the encounter, and it resonated with so many people that it became a viral sensation, and the message of kindness and acceptance spread worldwide.
We spoke with Leah to learn more about that interaction and why small moments of understanding can be incredibly meaningful for families impacted by CP.
Children’s Cerebral Palsy Movement: Hello Leah! Thank you for taking the time to answer some of our questions. Could you tell us about your son, Malachi?
Leah Carroll: Malachi Jacob Carroll is four years old and the happiest boy you will ever meet. He loves to make people laugh and music of any kind will always bring a smile to his face. He adores his dad! He loves to ride horses at hippotherapy and spend time around other children. He is auditory driven and enjoys silly sounds and toys that make those sounds. He loves to swim! He also loves to watch Daniel Tiger and Sesame Street.
CCPM: We understand that Malachi has Cerebral Palsy. Could you tell us about your CP story?
Malachi was born very unexpectedly at 24 weeks gestation due to a placental abruption and was only 1 pound 12 ounces. He was born via emergency c-section and without a heartbeat, and it took 15 minutes of CPR to bring him to life. During that time his brain experienced severe damage resulting in grade 4 bilateral (both sides of his brain) bleeds. At 3 days old they sat us down and gave us the option of stopping life-saving care, but we told them as long as he wanted to fight we would choose to fight alongside him. And fight he has! He developed hydrocephalus from the brain bleeds that is controlled with a VP shunt. He also has severe epilepsy and fought infantile spasms at 8 months old. He was diagnosed with mixed cerebral palsy so the core of him is hypotonic while other areas like his hips, knees, and feet are extremely hypertonic. We spent 4 long months in the NICU and he has had 13 surgeries since his birth. But not a day goes by where you won’t see a smile on that boy’s face!
Malachi is non-verbal but is very intelligent. He is learning how to communicate to us in his own special ways, like a frown for “no”, one arm moved for “more”, and a one of a kind happy dance for “yes”. He is immobile and still struggles tremendously with head control but is slowly making progress. He does not have functional use of his legs due to his cerebral palsy and his hips are severely out of socket but he enjoys getting out and about in his wheelchair and doesn’t seem to mind the limitations. He finds joy in everything that he does!
Back in May, you wrote a Facebook post thanking an anonymous mom that you met at Chick-fil-A. Can you tell us the story behind that and what inspired you to write the letter?
LC: When we take Malachi out anywhere we are often treated one of two ways: with pity or completely invisible.
Most times strangers don’t mean to be offensive, but in their attempts to not say the wrong thing they simply pretend that we don’t exist. When I look at Malachi I see a sweet boy with a joyful spirit. My desire is that others see that happiness and joy in him.
As a special needs mom, every day I struggle with the “why” questions…why us, why Malachi. It is so easy for me to fall into a pity party thinking about how difficult our life can be. So when complete strangers choose to take that route, it can be so damaging to my already fragile boundary. Each morning I have to make the conscious decision to look for the blessings in our life and find the positives to focus on.
So when those rare moments do come when we have a positive encounter, like that day at Chick-fil-A, I cling to them!
We had a horrible start to our morning as we had traveled more than an hour to a neurologist appointment and had been forgotten in the waiting room. Because of the delay we were going to be late to our next appointment leaving me frazzled. As we scrambled to the car and got back on the road, I looked in the rearview mirror and noticed that Malachi was moving his mouth telling me he was hungry. He is still fed primarily through bottles and feeding him is not a simple task. As I watched him communicate with me I decided that we just needed to take a break and simply be extremely late to our next appointment. We just happened to be driving by a Chick-fil-A, which sounded great to my 7 weeks pregnant body so we parked and went inside.
As usual, the heads began to turn as I pushed Malachi’s wheelchair up to the line. Feeling all those eyes on me is something I still struggle with, but something I am working on! I never want Malachi to feel that I am embarrassed by any aspect of our lives, so I am working hard to get past that red faced reaction and instead beam with pride over my boy!
The letter I wrote will do a great job at explaining the rest of the story that day. Here it is:
To the mom of three at Chick-Fil-A: I sensed your panic when your five year old son pointed at my son in his wheelchair and shouted “Mom look at THAT boy!” You leaned forward and quietly told him and his three year old brother that we don’t say things like that and they shouldn’t point or stare. But as in most cases, these suggestions are futile with young, curious minds and they continued to stare and loudly ask questions about my son’s differences. When you realized your whispers weren’t working I saw the panic disappear and you took a deep breath and took a step of courage. You brought your boys over to Malachi and said “I bet he would like to know your names!”. As they said their names my little Malachi started grinning from ear to ear and jabbering back to them. The joy on his face brought tears to my eyes- he loves kids his age but so many are fearful to come and speak to him. Your boys continued to ask questions about his foot braces, his wheelchair, why his legs don’t work, why he holds his mouth open like that. You took the time to educate your sons in that moment and help them understand that different is okay. Different is not something to fear. And that it was okay to ask questions! Thank you for giving my son a chance to meet your kids. Thank you for being the type of mom who educates your children instead of frantically trying to silence them. Special needs moms have to develop tough skin- we get used to stares, comments, and whispers. Please know it takes a lot to offend us, particularly when the comments are coming from young children. Give your kids the same grace we give them and use the opportunity to teach them about differences. So Chick-Fil-A mom, thank you for raising your children to embrace children like Malachi. And thank you for giving my son something to smile about.
Several days had gone by before I posted the letter. The more I thought about the encounter the more I realized that the other moms are just unsure of what to do in those situations. I don’t fault them for the comments, as kids are naturally curious. I thought posting the letter on my Facebook page would give my friends who are mothers an opportunity to see the situation from a special needs mom perspective and give them a positive example of how to handle similar situations. I never dreamed it would go beyond the friends on my personal page.
CCPM: Were you surprised when your post attracted the attention that it did? Why do you think it resonated with people?
LC: I remember opening up my Facebook page that same afternoon and I was absolutely shocked at the reaction the post was getting. People kept commenting about how the post made them cry and I re-read it trying to figure out what had captivated them so much. I still haven’t been able to put my finger on it! Within 24 hours it had been picked up by several other Facebook pages and it began to go viral. By the end of the month it had been translated into over 30 different languages (that we know of) and spread worldwide. The response has been overwhelmingly supportive as many parents comment that they never knew what to do in similar situations.
I think the post reminded people that we are all mothers who want the same thing for their children- acceptance and kindness. I believe the post served as a reminder that even though our life is filled with challenges that we didn’t expect, we still have a strong desire to be acknowledged and interacted with as though we are any other typical family. And while Malachi may not be able to verbalize it, he too is lifted up by these moments.
CCPM: Tell us about that day. How were you feeling when you saw the mother’s two sons, Crawford and Lawson, looking over at Malachi?
LC: I have never been offended by the looks of young children. Now adults who stare and older children who should know better can frustrate me, but these young boys were simply seeing something for the first time. I was amused at their questions and very interested in hearing how the mom would respond. When she responded with such grace and brought the boys over it actually caught me off guard! But the moment that touched my soul is that both of the boys looked at Malachi and introduced themselves. Often when kids come to “talk” to Malachi they interact with me, not quite sure how to talk to him. But these two boys talked to him like he understood every word (which we believe he does!) and seeing them look past his differences and see him as simply a four year old boy in a cool chair brought tears to my eyes.
CCPM: And how did you feel after they came over and introduced themselves?
LC: I could not stop tearing up but I couldn’t look away from the tender moment. The boys had gotten close enough to Malachi that he could see them well; he has cortical visual impairment and only sees well with his peripheral vision. Malachi’s smile when he saw their faces was one of kind and watching that encounter without having to push to make it happen overwhelmed me.
CCPM: Even though it was such a simple act of kindness, you’ve said that it meant a lot to you. Could you tell us why?
LC: My desire is to give Malachi the most normal life possible. I want him to experience life to the fullest and get to experience all of the joys and highlights that other kids his age do. Making friends is one of those things I desire for him. The older he gets the more difficult I am finding that task to be, and it breaks my heart sometimes. To see two young children so excited and eager to meet Malachi just touched my soul. It is an encounter I always wished would happen…that Malachi would be able to make friends without me feeling like I was forcing the kids to be kind to him… and seeing it firsthand was a dream come true.
Genuine acts of kindness that aren’t created out of pity are so special to me.
CCPM: As the parent of a child with CP, how do you hope other children treat your child?
LC: I often see fear in the eyes of children when they encounter Malachi. As I try to process why this emotion happens, I can’t help but think it is a byproduct of how adults in our society view people with disabilities. I hope our culture changes in a big way that encourages more GENUINE interactions like ours with these sweet boys. I hope parents will begin to educate their children instead of silencing them as I often witness. I hope that all children are as excited as these boys were to get to know Malachi.
CCPM: If you could share a message with everyone, what is one thing you’d like the world to know about Cerebral Palsy?
LC: Families with warrior kids like my Malachi want you to know that we absolutely love our son, just the way he is. Do we wish things were different and life wasn’t so hard for our children? Absolutely. But this is our reality, and we have accepted that! Instead of focusing on our challenges, as we are daily tempted to focus on, please see our contentment. See our pride we have for our mountain moving, earth shaking, superhero children. See them as we see them- a blessing that we can’t picture our lives without. Let’s all work to change the view of disabilities from one of pity to one of encouragement fueled by genuine moments of kindness.
If you have someone you would like to nominate to share their CP story, please send an email to email@example.com.
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This week, we talk with Kimberly Gray. Her daughter Sammie lives with Periventricular Leukomalacia, caused by Hypoxic Ischemic Encephalopathy. Children’s Cerebral Palsy Movement talked with Kimberly.
Tell us a little bit about Sammie’s birth and the challenges she faces as a result.
I had a perfect pregnancy. Delivery, on the other hand, was very difficult. I was in labor for 20 some hours. The epidural made my labor stop so they had to give me pitocin. Once I was fully dilated, I pushed for 3 1/2 hours. They tried forceps and still couldn’t get her out. So I ended up with a c-section. Her apgar scores were 8 and 9. It appeared that she was absolutely perfect in every way possible. I could tell something was wrong when she was 2 or 3 months old. I couldn’t tell you what it was, I just felt it. The doctor kept telling me I was a first time Mom and I was just scared. When she turned a year old, she had never pulled to a stand or anything like that. The pediatrician just said she was a lazy baby. At 18 months old, she had her first seizure. They thought it was because she had a fever and that’s what triggered it. She another seizure the next day. So, they done and EEG and diagnosed her with Epilepsy. They referred us to a pediatric neurologist and he ordered an MRI. She had already had a CT scan and they said it was fine. This doctor said he wanted the MRI because it’s a more in depth look. The nurse called me on the phone with the results. She said your daughter has Periventricular leukomalacia caused by Hypoxic Ischemic Encephalopathy. To put it in simple terms, my daughter had brain damage due to a lack of oxygen. I was devastated.
Do you have any other children as well? How did/does your family cope with the challenges that you faced and face? What helped you?
Sammie is my only child. I love her just the same as I did before her diagnosis. I had an extremely hard time at first. I blamed myself and felt so much guilt. I was her Mom and I was supposed to keep her safe. I felt like I had failed. My parents were very supportive. Sammie was their world. Her Dad and I are now divorced but at the time, he had a hard time coming to terms with it. He was in denial that anything was wrong. Needless to say, we had many arguments over it. He blamed me. Eventually, he came to terms with it.
We understand that Sammie just graduated sixth grade, which is amazing. I especially loved seeing her walk down the hall amidst cheering peers and families. How has her school experience been for her and for you to date?
School for Sammie was a great thing. She loved being around her friends and seeing everyone. Mentally, she is not on her age level but the kids were all so accepting of her. She worked hard to get to where she is today. We had a few hiccups along the way with the school. However, once I stood up to them and let them know what was acceptable and what was not, things improved. You have to know your child’s rights!!
Has she made nice friends in school that love and support her?
Sammie is in a Special Needs Class but she is around the typical kids as well. They all adore her!! She is nonverbal and doesn’t sign. They still include her though and still talk to her.
Does Sammie have any hobbies? How does she like to spend her time?
Sammie loves books, older tv shows, dolls, barbies, throwing her ball, swinging outside, being around people, music etc. Sammie is a very happy little girl and she pretty much enjoys everything.
Have there been any therapies that have been especially helpful in improving Sammies’ function over the years?
Physical therapy has been great for Sammie. It has really helped her with strength, coordination and confidence when it comes to walking.
As a parent raising a child with CP, what has been your biggest challenge?
My biggest challenge has been trying to overcome the fear and the unknown. I was terrified when she was first diagnosed with everything. I thought it was the end of the world. Turns out, it was just the beginning of an amazing journey. I worry about what will happen to my daughter when I’m gone. I worry that she won’t understand it. I worry about when the time comes that I am unable to care for her. I have dealt with hateful comments from people and that has broke my heart. I’ve always wanted everyone to see Sammie for the amazing little girl that she is. Unfortunately, some people only see what she can’t do. Not what she CAN do.
As a parent raising a child with CP, what has been your biggest joy?
My biggest joy has been being a Mom to her. Sammie loves to no end, always has a smile on her face, a contagious laugh and is always so happy. She doesn’t know hate. She doesn’t understand how cruel the world can be. Everyone is her friend. My other biggest joy has been watching her determination. She has such strength. Sammie is truly my hero and has taught me so much.
What has surprised you the most?
How well have you and your husband been at taking care of your own needs and health along the journey? Any lessons you would share?
We’re currently working on creating a supportive network for the CP community. Kimberly, do you feel a community of other families impacted by CP would make you feel more supported? Why?
I do feel like that would make me feel supported. When you’re in a smaller community where they’re not as familiar with CP kids then it can be pretty rough. You often feel lonely, sometimes scared and confused. You’re dealing with all of this on your own and it would be nice to have people you could talk to that understand what you’re going through. Not just someone who read about it and suddenly, they’re an expert. It helps when you have people that have been there. People who know what you’re going through.
What would a community like that look like, ideally, to you?
I would love for it to be a community of support and acceptance. A community where we help one another. I don’t want anyone to feel as alone and terrified as I felt when Sammie was first diagnosed. I want that scared Mom to have that support and encouragement. I want someone to be there and let her know that it’s not the end of the world, it’s just the beginning of a beautiful new journey!!
What is your greatest hope or dream for Sammie?
I hope that people will accept her for the wonderful little girl that she is. I hope that she never feels left out or that she is not wanted. I want Sammie to always feel like she is just as good as everyone else. I want her to always know that she is loved more than anything. I want her to be able to achieve all that she can to the best of her ability and I want her to know that her Mom was there, cheering her on, every step of the way.
Do you have any advice for other parents raising children with CP?
Never give up hope!! You do not know what your child will achieve. It may take them years to achieve whatever goal you have set and that’s okay. It’s also okay if they never achieve it. They are still your child. Keep trying. Set new goals. It’s hard to not focus on the negative at times but please don’t. I always say it could be worse. Sammie is here every day and I am so fortunate for that. I can hug her, tell her I love her, see her smile, hear her laughter etc etc. You have to look at the positive things your child can do. I promise you this, somewhere out there is a parent wishing that their child could do what your child does, even if it’s something small. Be their voice. Be their advocate. Most of all, be their parent that loves and supports them to no end. You can’t give up hope. Ever.
If you could share a message with everyone, what is one thing you’d like the world to know about CP?
Kids (and adults) with CP are just like everyone else. They may do things differently but they still have feelings!! They still want to be accepted, loved, supported and encouraged……no matter the severity of the CP. You can’t catch it. You can, however, educate yourself about it. You can also educate others. When I talk to others about CP, I know I am at least planting a seed. It’s up to them what they do with that seed but at least I know it was planted.
Is there anything else you would like to share?
My daughter may not be society’s version of perfect but she is perfect to me.
This guest article was written by Maria Zuccarello. A version of this article was first published on The Mighty.com.
In my job, I am responsible for identifying and discussing disabilities in school children. I in my personal life, I make it a point to name and discuss my disability when the occasion or need arises. As policy at my job, a student’s disability is “confidential”. I understand why this policy is in place. Parents and students—especially those acclimating to a new eligibility—can be extra sensitive to discussing it and out of concern for their child’s well-being parents may be reluctant to “giving it a name” so to speak. They fear their child being “labeled”. Naming it makes it more real, more permanent and more open to negative connotations brought on not necessarily by the disability itself, but by other people’s reactions based on misinformation, misinterpretation and fear. I understand. I do.
As difficult as it can be though, I advocate for personal knowledge and public discussion. I think it is only right that the person—adult or child–with a disability has a name for the symptoms that they experience personally. You cannot “hide” the disability from the person experiencing it no matter what the name. The “label” can answer so many questions about what is going on with the person’s own body and mind. Knowledge—accurate knowledge—creates ownership. One of the best things I experienced was talking about my disability when I was as young as eight years old. I stood in front of other eight year olds and said I was born with things like “Goldenhar’s Syndrome” and “Hydrocephalus due to aqueductal stenosis”. Was I a young Einstein? No. Did I actually understand what any of those terms meant with any medical specificity? Not really. Without those words, my teachers could think of me as “lazy” when I didn’t follow directions when in actuality I didn’t hear them. My peers could think of me as weird and at fault because I didn’t speak like they did or move like them. So why should they include me if I wouldn’t conform? What talking about it did was give me the words to advocate for myself when it came to my disability needs. I could correct the bullies not by giving them back the hate and fear they were giving me but by granting them the words to make my disability comprehensible to them and part of their experience. My label also made it possible for me to ask for what I needed to learn or function with my teachers and other adults.
Labels help people without disabilities as well. We humans by nature categorize as a way to determine how to act. I have a hearing impairment. Oftentimes I don’t hear people when they are on my right side as I have unilateral hearing. When strangers don’t know that, they may treat me as negatively as any other person who might “ignore” them or just walk away insulted. These acts devalue me as a human being. Conversely, if they know I have a hearing impairment, they have a number of constructive options. They can position themselves on my “good side” before they speak to me. They can tap my shoulder to get my attention. These options show me that I am respected.
In each of the scenarios I am labeled. In the first scenario I am labeled “rude” and rejected. Both of us miss out on making a connection. We miss sharing our personalities and strengths because of a lack of knowledge on their part. But that is not their fault. It is mine. Often when I see people turn away from me like that, whether I realize why or not, I end up thinking “their loss” and am offended as well. They blame me for being rude when I wasn’t and I blame them for acting unfairly even though they do not share the same world view that I do which is based on specific experiences.
In the second scenario, I am labeled “hard of hearing” and accommodated with understanding. We communicate effectively and share a mutual respect based on equity. Once we do that, we can move past my disability and share common interests and individual strengths—and even flaws. The second scenario requires both of us to stretch a little beyond what may commonly be “our comfort zone”. I have to understand that other people may not have the same experiences as I do. With that experience, comes specific vocabulary. I have to give them the appropriate words to describe who I really am based on my experiences. They have to accept those words and understand them as a positive experience, potentially altering the world view they may have had before our encounter.
Words are one of our smallest forms of communication. Yet they have a lot of power. Words describe and categorize our world and experience. In and of themselves, words are neutral, objective. We however, have the power to impart meaning on words. We have the power to use our words for good, to unite, to create understanding, to make positive connections. The labels we use as people with disabilities are powerful. Sharing them, using them with nondisabled people can create connections, understanding and respect. Not using them, can create fear, misunderstandings and division. It is up to each of us—disabled and nondisabled to choose to use our words to empower or devalue. What do you choose?
About the author:
This article was written by Dr. Mindy Aisen, Neurologist and CP Expert. Dr. Aisen serves as a National Adviser to Children’s Cerebral Palsy Movement.
Definition of CP:
CP is the most common neurological disorder resulting in motor disability of childhood. CP is defined as acquired brain injury (due to a variety of causes) before the age of 2 years, resulting in motor impairment. It occurs in 3.5 out of every 1000 live births, and is “viewed as an incurable condition of early childhood with static deficits” that are known to persist into adulthood. Nearly one million children and adults in the US have CP.
Despite its prevalence, there has been scant research to study optimal management of CP across the lifespan. Research funds for clinical interventions to enhance motor skills have been ever-decreasing since 2008, in spite of the fact that research dollars directed at other developmental and motor disorders has been on the rise.
Although CP has no cure, there are many promising treatments. Emerging research demonstrates the potential of capitalizing on the innate plasticity of the human brain (principally through intensive and engaging task specific practice). Enhancing motor recovery and preventing complications can greatly enhance quality of life for those with CP. However, without available funding, these treatments cannot be proven.
If lack of funding persists, the net result is that these individuals age out of the system at age 18 and are less likely to be independent and gainfully employed, while at the same time experiencing decreased mobility, increased pain and chronic complications.
A Call to Action:
Advocacy for greater research stands to change the lives of hundreds of thousands of children and adults with CP.
Over the next months I shall discuss research needs and clinical issues that face many children and adults with CP (and their families).
Some of these clinical issues include the
primary complications of CP (i. e., those due to brain damage), some of which are present in all people with CP, and some are not:
- Movement Disorders
- Learning Impairments
- Attention/Behavioral Impairments
Secondary Complications (i.e. the medical/surgical complications that occur in some as a result of chronic neurological impairment:
- Limb length discrepancies
- Joint deformities/tendon contractures
- Respiratory impairment
- Dental complications
Tertiary Complications (i.e. the psycho-social, participation impairments which must be addressed and minimized)
- Inequality in educational opportunities
- Ultimately, inequality in employment opportunities
- Social Isolation/Depression
To learn more about Cerebral Palsy or to stay connected with our community, please follow Children’s Cerebral Palsy Movement on Facebook.
About Dr. Mindy Aisen:
Dr. Mindy Aisen is a graduate of the Massachusetts Institute of Technology, where she studied mechanical engineering. As an undergraduate she designed a therapeutic toy for children with neurological impairment, which was commercialized and ultimately placed in the MIT museum. It was that experience that led her to a career in neurology and neurological rehabilitation. She graduated from the Columbia University of Physicians and surgeons and completed her Neurology residency training at New York Hospital/Cornell. She joined the faculty of Cornell Medical School and served as Chief of Spinal Cord Injury at the affiliated Burke Rehabilitation Center. Other key positions in her career have included serving as the President of the American Society of Neurological Rehabilitation, National Chief of Rehabilitation Research and Development for the Department of Veterans Affairs, and Medical Director of the United Cerebral Palsy Research and Educational Foundation (UCPREF). She currently holds the postions of Chief Innovation and Research Officer at Rancho Los Amigos National Rehabilitation Center and Clinical Professor of Neurology at USC-Keck School of Medicine.
During her years at the UCPREF she gained a broad and deep understanding about the needs of the CP Community and gaps in evidence for guiding most effective care. She also happens to have a nephew with CP, and has intimate knowledge about the impact of CP on the family.
Her blog will explore clinical care, research needs, and specific roles of medical care that require a new approach for helping children and adults with CP have long, contented, and productive lives
Children’s Cerebral Palsy Movement Honored by University of California, Irvine, Dean of the School of Medicine
Children’s Cerebral Palsy Movement was honored recently by receiving a commendation from the University of California, Irvine, Dean of the School of Medicine.
“The University of CA, Irvine, is extraordinarily grateful for your support of pediatric Cerebral Palsy movement research under the direction of Kimberley Lakes, Ph.D. Because of your financial support, Dr. Lakes and the team at the UC Irvine Pediatric Exercise and Genomics Research Center will impact the lives of children with Cerebral Palsy and their families.
As you know, PERC is one of the few centers in the world of its kind and the unique team of experts you are working with are developing translational research to advance the field of pediatric exercise as medicine. Thank you for your contributions and commitment in pursuing our shared vision to transform the future of medicine.”
Howard Federoff, M.D., Ph.D.
Vice Chancellor for Health Affairs
Dean of the School of Medicine