Dear D.C., please don’t forget about me

Well hello there, esteemed ladies and gentlemen of the 115th U.S. Congress. My name is Kohler Henson Chrestman. No, I’m not related to the toilet, sink and urinal magnate. Kohler is my mommy’s maiden name. I go by Kohl.  I wanted to introduce myself because every once in awhile your world and my world intersect and you all are in a position to make decisions that have a direct impact on my life, so I feel the need to express a few of my concerns with you. This is one of those times.

So bear with me.

Let’s see, a little bit about me.  I just turned five last week, I live in New Orleans, Louisiana, and I am excited that it is currently Mardi Gras season here.  I am unlike a lot of five year olds in a few ways.  One, I have a unique taste in music.  I prefer alt rock to the B.S. kids my age usually listen to.  Give me Pearl Jam, Nirvana and Beck over that Raffi hack.  My favorite song is “Inside Out” by Spoon.  It plays at my house, on average, about 5,482 times per day.  Second, I probably know more curse words than most five year olds. Thanks mommy and daddy.

Still another way I am different is I have had a lot of really hard experiences.  My parents say I have gone through more in five years than most people should ever have to go through in their entire lives.

You see, when I was born, I hurt my brain. As I was touching down here on planet Earth, my brain didn’t get enough blood and oxygen, and it was damaged.  Because of my brain injury, I have some issues.

I spent the first month of my life in the hospital.  I had a bunch of tubes in my nose and throat, and there were lots of machines that would beep all day and night. My mommy and daddy were really sad at first because they were not sure if I would make it.  But I pulled through and, after a couple of weeks, I got those tubes removed and started improving. Finally, after a few days, my mommy got to hold me.  This was awesome.  Also, my daddy finally got to hold me in the Heisman pose, something he was talking about constantly before.  He is kind of weird, but I still love him.

It was awesome to finally go home.  We live in a really cool part of New Orleans right across from City Park.  One thing I didn’t like about having been relinquished into the custody of these mommy and daddy characters, however, is that they kept squirting this nasty stuff from a syringe in my mouth.  And they did it twice a day.

Apparently it was to control my seizures.  I tried to voice my objections over this nonsense by crying, fussing (it was pretty much all I knew how to do at the time) and essentially refusing to take it.  Yet somehow they still got it in.  Did I mention it tastes like crap?

Anyway, more drastic measures were in order, so after about eight months I just said “screw it” and simply did not allow anything in my mouth at all.  Unfortunately this also meant food.  And let me tell you, it sucked.  My mommy calls it my “Great Hunger Strike of 2012.”  I stopped growing, I was always hungry, and I only slept for a few hours per night because I was so hungry.

The culmination of my hunger strike occurred in December of 2012, just before my first birthday.  Again, I had gone several months without sleeping and barely eating.  This was hard on my mommy and daddy, but particularly on my mommy.  I am no stranger to having seizures, but one morning my mommy got so stressed out that she had a big seizure of her own.

She ended up being okay, and at first we thought it was what is called a “Psychogenic Non-Epileptic Seizure,” or PNES.  Once daddy realized that mommy was okay, he kept telling everyone that mommy “had a big PNES this morning.”  People would roll their eyes at daddy, but daddy kept laughing and laughing.  He thought it was hilarious.  Daddy is kind of a dork, but I love him.

A few months later, I got a surgery where the doctors put a tube in my stomach so they could feed me and give me my medicine. This took some getting used to at first.  They would feed me and give me medicine, and it would go directly in my stomach.  I wasn’t sure what to do with it, so I vomited.  A lot.  At least one full feed per day.  My best friend at the time was Floyd the Frog who would sing and dance to me several thousand times a day.  His one hit, “Singing in the Rain,” would oftentimes be the only thing to calm me down when I got upset.  Well, since Floyd was always around, he frequently found himself  in my direct line of fire, so I would vomit on him.  Thank God he had his umbrella and he was wearing his raincoat!

In any event, because of my vomiting, I had to go back to the hospital for another surgery. This time they wrapped the top of my stomach so that I can’t vomit anymore.   While it stopped the vomiting, it made me really uncomfortable.  It made me gag and retch throughout the day.  There were times where I couldn’t even breathe for a few seconds. It would take over another year and more surgeries before my problems were under control. I had to have six surgeries before I even turned two.  Before I would go in for any of my surgeries, I would frequently hear people ask my daddy what surgery I was having. Daddy would tell them I was having a “penile reduction.”  I don’t know what that is, but daddy kept laughing and explained that “it” was causing low back pain and balance issues.  Like I said, he is a dork.

Thankfully, I have not had to have a surgery in a few years, but my mommy and daddy still bring me to the doctor all the time. Every week, I also see occupational therapists, physical therapists, speech therapists and, my favorite, music therapists.  I also have been trying a different kind of therapy called the Anat Baniel Method that my parents pay exorbitant amounts of money out of pocket for because insurance does not cover it.  But it is helping to “wake up” my brain which is important.

At school, I have lots of friends.  Even though I can’t speak yet, I won an award last October for being a good “communicator” and teaching different ways to communicate. I am learning to communicate by nodding my head yes and no to questions.  This is a game-changer because I can now help my mommy and daddy know what I need. They recently learned that, when I grow up, I want to be a rock star, but I have no interest in being a fireman or being a daddy.  To be sure, the rock star life requires everything of you, and fighting fires or having kids are not exactly consistent with the rock star lifestyle.  Besides, public service and fathering children are so not rock n roll.

So, why do I give you all these details of my life?  If you have made it this far, you may have noticed a couple of things other than the fact that my daddy likes to make penis jokes.

First, I have A LOT of medical needs, and I will for a long time.  I have been in and out of the hospital and have a lot of doctor and therapy appointments.  Second, I have a lot of special needs when it comes to my education.  Other than my mommy and daddy, I have a whole team of teachers and therapists that work tirelessly to make sure I get what I need and develop into the highly-intelligent person that many loving people can see despite my disabilities.

Now, trust me, I can think of 1,000 other things I would rather do than discuss politics. But every once in awhile politicians like you all take on topics that have a direct impact on my life, and I have to speak my mind so you don’t forget about me as you go about the critical task of forming our nation’s laws.

So here goes.

Okay, the healthcare law.  Obamacare, Affordable Care Act, whatever the the heck it is called. I’m not even going to discuss whether it should be repealed or not because (1) I am five and (2) it is beside the point.  What I can tell you is that while health insurance is really important to everyone, it is SUPER important to me. My mommy likes to say I am a “frequent flyer” of the healthcare system. Here is what I want you to keep in mind:

  1. If you let insurance companies set a spending cap on people, it will affect me.  It will affect millions of kids like me.  This is because we would likely hit that cap pretty quickly.  And once we do, we’re screwed, and my mommy and daddy will have to pay out of pocket for my healthcare.  That’s B.S. My mommy and daddy both have good jobs and still can’t afford it. Don’t let this happen.
  2. Likewise, if you let insurance companies deny or price out people because of “preexisting conditions,” it will affect me.  It will affect millions of kids like me.  By now you know I have a preexisting condition.  Anyone who would deny me health insurance because of it should be drawn and quartered.  Again, don’t let it happen.
  3. Finally, it is important that my parents be allowed to keep me on their policy as long as possible.  Right now, I can do that until I am 26.  Like I mentioned before, I will probably have specific medical needs for a long time.  This topic actually causes my mommy and daddy mind-numbing anxiety because all-too-often kids like me don’t even make it to age 26.  If you ask me, they don’t have anything to worry about because I plan on sticking around.  And when I do, I expect that I will be allowed to continue being insured.  If I am kicked off their policy and have to get my own healthcare, it will be disastrous (see point #2). Again don’t let it happen

Alright, I am almost done.  Just one more thing to cover, and that is my education.  Like healthcare, I don’t think I have to explain to you how important this is to me.  There are federal laws that make sure millions of kids like me get the education they need and deserve.  Those laws are very important. Before they were enacted, that was not the case, and kids like me were left out in the cold.  I don’t plan on being left out in the cold.  I hate cold weather. That’s one of the many reasons I live in New Orleans.

The nominee to be a leader of  the Education Department is a lady named Betsy Devos. She looks like a nice lady. But like most people who have the privilege of healthy children, while she may appreciate my particular situation, she is far from having a full understanding of it and what my educational needs are.  And she doesn’t really even know much of anything about the federal laws in place that ensure I get an appropriate education.

In short, I don’t think she is qualified to be the leader of education in these United States. I mean, my parents aren’t really qualified to be my parents either, but I had no choice in that matter. You do. If you aren’t on the committee that she testified in front of, then I urge you to go back and watch that testimony.

But, no offense, you politicians are really long-winded, and a lot of you like to hear yourselves talk, and that hearing was like three hours. That’s okay if you don’t want to spare three hours to listen to the hearing, but at least spare eight minutes and listen to this part. It scared me, and it was enough to convince me that Ms. Devos is not qualified for this position:

Okay, that is a wrap.

In many ways, I am just a typical five year old.  But I need quite a bit of extra tender love and care.  I am a highly-intelligent person, but my brain has not quite figured out how to express that, and it is hard to see my intelligence at first glance.

Here is the cool part.  I am only just beginning to figure out how to pierce through my veil of disability, and more and more people are realizing how bright and special of a little guy I am.  I don’t want to sound cocky, but I adopted my daddy’s shameless and baseless self confidence, so I can’t help it.

But I need your help.  I really, really need to have fair and appropriate access to healthcare and education that will allow me to continue to grow from the handsome, five-year-old dude I am now to a productive member of society.  That’s where you can help.  Please ensure that the protections I mentioned remain in place if you guys decide to repeal the healthcare law.  And please vote no to confirming Betsy Devos as the Secretary of Education.

It’s not asking much really.  And if you do it, one day I will be able to thank you myself.


If you know Kohl or someone like him or if you care about these issues, please share this.  Please also call your representatives in Congress to voice your concerns.  Getting angry about things does nothing.  Take action.

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12 Responses to Dear D.C., please don’t forget about me

  1. Charlita says:

    I have been keeping up with Kohl forever he is the world’s greatest kid. TEAM KOHL.

  2. Betsy Batti (yes, that is my real name) says:

    Well said, young man!

  3. William W Bethea says:

    You are a brave young man. I agree with all your observations. I know it is hard, but keep the faith. As MLK said, ” the arce of the moral universe bends toward justice”. We all need to add our weight to make the bend more secure and more acute. I am proud of you. One of your many uncles. Bill Bethea

    • Andy Chrestman says:

      Thanks Uncle Bill! Very well said, and I love that quote. While Kohl is more content just being a five-year-old and I am more content just annoying my wife, we have to speak up from time to time. Appreciate your thoughtful comment.

  4. Vicki says:

    Another issue that needs to be addressed is the demand that a child with a disability is made to stay in school until the age of 22. Although it may be good for some, it should not be an “across the board” demand. It should be on a case by case issue. My daughter (who was born disabled and has various medical needs) had tremendous anxiety problems along with medical concerns that made it impossible for her to continue in the school environment. I became her legal guardian when she reached the age of 18 and also became her home healthcare provider (which is a paid position). In most cases, including mine, the pay for this position is very close to minimum wage. But with that being said, it has also eased my stress because I am able to take care of my daughter’s health and emotional needs and pay bills as well. However, new guidelines were put into place stating that because of her age, she is considered “school age” and will not be entitled to the hours she was receiving (for a home health worker) because according to their guidelines she should be in school from 8am to 3pm. These changes became effective this month (January 2017) that decreased her budget tremendously. And caused a domino effect in our household as well. Because of her budget decrease, it became apparent that my hours as her home healthcare worker would be cut drastically. Now, I had come to depend on my income to provide for her and although I did not receive any type of raise in the last 2 years, I have made a budget and have been able to provide for her needs as well as pay the necessary bills to keep a roof over our heads. I was thrown completely off balance when I learned that the new laws being put into place would cut her budget and therefore also reduce our monthly income by $400 a month. Now that might not sound like a lot of money to some of you, but it is catastrophic to us. I am at a loss to understand how this has happened. She was born with her disability. It is a lifelong journey for her and I. Her needs will not just someday disappear to justify her budget being cut so drastically. And the cost of living didn’t plummet over night to justify it either. How can this possibly happen to this population of people? We are giving free healthcare and welfare to people who are healthy and just too lazy to do an honest days work. I have worked all my life, paid taxes and I am at a loss as to how this is happening in this day and age. Please someone explain this to me. We have to get people in our government that know the needs of its people. My daughter is not a number on a sheet of paper…please don’t treat her like one.

    • Andy Chrestman says:

      Vicki, thanks for sharing your experience. I think we all know that there is no “one size fits all” approach when it comes to educating our children. This is particularly the case with special needs children. I hate what you have had to go through. It is certainly one of the unintended consequences of legislation mandating education for those with special needs. That is clearly not “appropriate” for your daughter. I wonder if you could contact a local advocacy organization that could speak on your behalf and bump back up your funding?

  5. Patti Hutchinson says:

    Thank you for sharing two important issues concerning healthcare and a free and appropriate education for everyone. You ARE a great communicator!!!

  6. jami says:

    As a retired teacher I could not agree more with you. Ms. Devos should not become the Secretary of Education…maybe a secretary IN an educational setting…like a school…a public school…to witness the challenges faced by all concerned. Continue your fight Sir. Best to your Mom and Dad, your Doctors, nurses and especially to your therapists and teachers.

    • Andy Chrestman says:

      Well thank you for your comment. I assume, by your last name, that you are related to the lovely Kate Vandenbossche. If so, she is wonderful. I had the pleasure of meeting her through the Marine Corps. And thanks for your perspective. Having never worked in education, I am curious to hear what people’s thoughts are that are in the “industry.”

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