The Koan Action Network — Please Sign Up!

As I’ve said many times before, having Koan in our lives is a wonderful, joyous adventure.  But, there are things I worry about.  This type of story is what I spend a lot of time thinking about — and it really scares me.  Our vision for Koan is to become a happy, healthy, and independent (as possible) person.  This means living on his own in the community, probably in a group setting.  Instuitutional living is the right thing for some people.  But, for most people with disabilities, instituinalization means a life of depenence, loneliness, and unhappiness.  In our current system in Iowa it also costs more to institutionalize a person than it does to provide community living.  So, what’s happening to these two young men is one of my nightmare scenarios for Koan — being removed from community living and being institutionalized due to cuts to programs like Medicaid.

More Koan Christmas Fun.

It’s no secret that leaders in the House of Representatives and Senate will be looking to make significant cuts to programs like Medicaid in the 2018 legislative session.  These types of cuts will make scenarios like the two young men in Cedar Rapids much more common.  And, of course, I worry that this will be Koan’s fate as well.  These types of deep cuts in social programs for disabled people are immoral and unconscionable.  I need everyone who cares about Koan to help us hold our representatives accountable for any actions they may take that would damage Koan’s future.

The cynical part of me believes that some of our elected officials do some cruel policy/electoral calculus when considering cutting social programs like Medicaid.  I suspect that they may believe that since disabled people often don’t vote, that there will be little pushback for making cuts to spending.  What I would like to prove this type of thinking wrong.  But, I need your help.

Heres’ what I’d like to do.  I would like to organize a “Koan Action Network”.  A group of people who love and believe that Koan should have access to programs and supports that will give him the opportunity to lead a healthy, happy, independent life.  To do that, we will contact (write, call, email) elected officials when there are policy decisions being considered that will have an impact on the supports Koan will need for his future.  I don’t anticipate this will be a difficult commitment.  There may be prolonged periods of time where we do nothing.  But, there may be times when I ask that we all make contacts frequently to ramp up the intensity of the message.  We need to let our elected officials know that when they make policy decisions that are detrimental to disabled people that there is a community around each disabled person that hold them accountable.

If you are interested, please fillout this very brief Form — it asks for your contact information.  I will create an email and text group and send messages as to the whole group requesting that you contact elected officials when there is an action item.  I’ll provide talking points that identify the problem and what we believe the official should support or oppose.  I’ll also ask that you reference Koan by name because I want them to connect any policy change to a real person.  These communications from me will brief and the act of making a call or writing an email should take less than 10 minutes.  So, this won’t take much time or effort.  But, the impact will be enormous.   These types of contacts really do make a difference.

I would love it if we could make it clear to people in office that when they make a change to a program that negatively impacts vulnerable disabled people that there are 10, 20, 30, 0r even hundreds of voices that will speak for this one person.  If we can get this type of thing going, it will be powerful!

Finally, I do want to be clear that while these calls may feel like you are taking sides in a partisan argument (democrats vs. republicans), I would ask you not to think about it that way.  I view this as a non-partisain issue.  Over the last 8 months I’ve gotten to know people from all different places on the political spectrum — very conservative to very progressive. I have yet to meet anyone who has told me that cutting social programs for Koan is a good idea.  So, this is not about choosing a political side.  The goal here is to safe-guard Koan’s (and all disabled peoples’) futures.

Please sign up if you wish to make a difference and help.


Salty and Sweet

This clip sums up Koan’s holiday experience better than anything I could write. The enhanced slow-motion on my iPhone is so much fun!  While this is only a two-minute video, he went on like this for the better part of an hour.  It was the perfect storm of joy.  He had his entire family there, watching and giving him attention.  There was wrapping paper to crinkle and plastic packing material to toss about.  And, what’s not shown in the video is a small school bus toy that plays “Wheels on the Bus”.  He would go from one thing (the paper), to another (the plastic), to another (the toy), then back again.  The R2D2 stocking cap was also pretty cute, too.

So, as you can surmise, Koan had a pretty great holiday.  But, unlike the rest of the family, he was ready for it to be over a few days sooner than everyone else.  On New Years Day, which was a Monday, Jeri noticed something hilarious and heartbreaking at the same time.  As I’ve shared before, Koan’s room is by the front door to the house.  This is the door that we use to send him off to school.  In our entryway, we have a floor to ceiling window that is just to the right of the front door.  We keep a wicker box for our shoes in front of this window.  Across from Koan’s room and to the right of the entryway is our dining room.  While we do have a dining room table, we don’t use it much as so it also works as ad-hoc storage — particularly for Koan’s stuff.  We keep Koan’s Convaid (wheelchair) just inside the dining room by the front door.  On a typical school day, we load Koan up into his Convaid right in the entryway and then send him out the front door to meet the wonderful transportation team from CCSD.  On weekends or longer holidays, it’s not unusual for us to find Koan in the dining room playing with his Convaid: pulling the straps and trying to pull it out into the entryway.  That’s his subtle way of telling us that he’s bored with us at home and would rather be at school.  But, on New Years Day he was doing something a little different.

That morning I was upstairs in the office doing reading the Hawkeye message boards.  Jeri called up to me asking me to come downstairs.  It was 8:30 AM.  Koan had scooted into the entryway — nothing unusual about that.  But, he had pulled the wicker basket we use to hold shoes back from the window.  He had positioned himself in that space directly in front of the window, his nose against the cold glass, turning his head from side to side.  He was looking up and down our street for the school bus!  Keep in mind that his last day of school before break was Thursday, December 21st.  But, somehow he knew that it was Monday. Both Jeri and I had taken the same amount of time off as Koan.  So, it was hard for us to keep track of days of the week.  Here’s the other kicker — Koan also knew that he normally get’s picked up on school days at 8:30.  So, there he is, face against the glass at 8:30 on Monday longingly looking for his school bus.  As time passed, he became more and more agitated — not completely sad, not totally angry/frustrated, but some mix of all those emotions.   Around 8:45, he finally gave up hope and scooted into his room to play.  It was one of the funniest and saddest things I’ve ever seen.

On Tuesday, he gave a repeat performance.   And, again, it made me mist up and laugh at the same time.  Culinary science has proved what most of us already know — when you mix something salty with something sweet, it tastes really good.  The saltiness accentuates the sweetness.   That’s a pretty good analogy for life with Koan, too.  This mixing of powerful and apparently incongruent emotions really heightens and enriches all of our lives that are intertwined with Koan. I can’t really put it any other way than this: it feels really good to experience profound and powerful emotions.  It’s life-affirming.   Again, it’s not all sunshine, flowers, and candy, however.  There are really difficult things that come with Koan’s condition.  There’s lots of extra work and worry.  But, this is one more example of why having him around feels like such a huge net gain.

School was set to resume on Wednesday.  Koan was thrilled when he saw we were following his school day routine: getting him up earlier, putting his socks on before breakfast (on a non-school day we don’t bother with socks because he takes them off so quickly).  But, Koan, again, was the only one in the house who was unhappy with the two-hour start delay due to record cold.  He got over it pretty quickly when he saw the school bus stop in front of the house.

A Possible Diagnosis?

Yesterday was a great day for Koan.  I stayed home with him in the morning, so he got to play with me and Adrienne until about 8:30 AM.  At that point, I put him in the car for a trip to Iowa City — one his favorite places to go.  By 9:00 AM we were at the U of I Children’s Hospital and there were all sorts of new people for him to flirt with and charm.  By 11:00 AM we were headed back to Cedar Rapids, and when we made the turn into the Prairie campus, he was going crazy with excitement.  We were back to school before lunch.  That’s pretty close to a perfect day for Koan.

The appointment was really interesting for me, too.  Back in early September, we re-engaged with UICH because Koan was having more frequent seizures again.  After some very thoughtful discussion, the care team and I elected to put him back on an anticonvulsant medication.  It seems to have worked really well.  We are not seeing any side-effects and more importantly, we’ve not seen a seizure since we started the medication.  

Also at the September appointment, the neurologist, Dr. Matsumoto, asked if we had Koan tested for Angelman Syndrome, a genetic disorder.  Back in 2008, we had a battery of genetic tests done on Jeri, Koan, and me to see if there was a cause for his delayed development.  All of these tests were inconclusive.  But, Angelman Syndrome often seems to come up with Koan.  People with Angelman Syndrome nearly always have a happy aspect — smiling, laughing, just generally looking very happy.  They have difficulty with mobility and verbal communication and they also will flap their arms occasionally.  In addition, people with AS often love water and can demonstrate problem behaviors (swiping).  These descriptors fit Koan to a “t”. Over the years, we’ve actually had a couple of people approach us when we’ve been out and about and ask us if Koan had Angelman Syndrome.  If you look at the AS site I linked, the pictures of people with AS just “feel like” Koan to me.  However, again, one of the genetic tests we had done in 2008 had ruled out Angelman Syndrome.  But, I’ve always harbored a little doubt about the accuracy of that test. I let Dr. Matsumoto know at the September appointment we did indeed have that test and it was negative.  Her response was, “Are you sure?”  She clearly shared my feelings about AS, but she looked at his chart and confirmed my assertion.  As we ended that appointment, she suggested we meet with the genetic counselor when we followed up in December.

So, yesterday, Koan and I met with a genetic counselor.  It was hilarious.  She talked to Koan and I for about five minutes, then asked, “Are you sure you had the Angelman test?”  Just like Dr. Matsumoto, she confirmed we did.  But, she then went on to say that test we had done back in 2008 was about 90% effective in detecting the genetic markers for AS.  So, she was recommending an updated, more granular test that should definitively tell us if he has this specific disorder or not.  Since the test is rather expensive, we need to wait for pre-approval from insurance before going forward.  I haven’t thought a lot, yet, or even talked to Jeri about what we’ll do if we not approved.  I hope that’s a non-issue and we are approved.  But, if Koan has taught us anything, it’s not to borrow trouble.  However, if we are denied, it will be an interesting choice for us — do we find a way to pay for testing out of pocket or do we just go on, without this knowledge.  

Even if we are pre-approved, I’m finding that I’m a little apprehensive about this process.  As I’ve said before, not having a label for Koan’s diagnosis is the best and worst thing about living with him.  The best comes from hope — hope that he won’t be limited by a concrete determination of his condition — one that will set limits on what he might be able to do.  And, the worst is the uncertainty of not knowing what to expect and not being able to plan.  I know it’s not that black or white.  Even with a named diagnosis, there’s a spectrum of impact and thus expectations. So, it’s not like an AS diagnosis locks him into a certain set of limitations.  But, part of me has, frankly, gotten used to not knowing and that’s the more comfortable state.  

If it does turn out the Koan has Angelman Syndrome, the really good news is that because AS is closely linked to autism disorder there’s lots of research in progress on treatment and mitigation of symptoms.  That’s pretty awesome.  There’s also the allure of community — support groups and organizations targeted to helping people and families impacted by Angelman Syndrome.  That would be pretty great, too.  So, we are now entering a new “wait and see” period.  First, we need to get approval from insurance to pay for the test.  Then, the test will take 4-6 weeks to process.  Stay tuned…

An (a)Typical Morning

Last Monday was a wild morning.  I’m sure that all families have these types mornings like this, but having Koan around always make it a bit more interesting.  On a typical day, Jeri is an early riser and is usually out the door before 6:15 AM.  I get up around 6:00 AM and our awesome respite worker, Adrienne, arrives at 6:30 AM.  On most mornings, I’m heading out to get breakfast about the time Adrienne arrives.  On a normal day, Koan hears Adrienne come in (Jeri unlocks the front door before she leaves) and will let her know if he wants to get up by shrieking with excitement.  Koan’s room is our former office/study located right by the front door.  We moved him from his upstairs bedroom a couple of years ago.  Carrying him up and down the stairs is a major chore.  The current room is far from ideal, but it’s the only feasible space on the main level of our home.  It has two French doors.  Sometimes Koan will even be out of bed waiting for Adrienne and will rattle the doors when he hears her arrive.

I can’t imagine what life would be like without morning respite.  It’s just one of the many amazing services the Arc provides my family.  Adrienne is with us a couple of hours each day — from 6:30 AM to 8:30 AM.  The Arc pays for the first hour of respite and we pay her for the last hour which is more like child care. This is really cool on many levels.  It gives us affordable and safe in-home childcare. Without the Arc coordinating with us on this, it would be so much harder — perhaps even impossible.  This arrangement gives Jeri and I the room to have Koan’s care not interrupt or impact our professional lives.  Without this type of service, it would be hard for both of us to work.  

On this particular day, Jeri got off to a little later start.  This had a cascading effect so that I also had to wait (got to sleep longer…) for her to finish up in our master bath.  By the time I was dressed and ready for breakfast, it was about 6:45 AM.  Jeri had left just after Adrienne had arrived.  Koan was changed, dressed, and his bedding changed.  Most nights, unfortunately, Koan’s briefs (diapers) don’t contain all of his output so many mornings he needs a new sheet and blanket.  Again, Adrienne is really awesome — she takes care of all of that! On this morning, Koan was already scooting from his room to our great room — which opens into the kitchen.  As with nearly all mornings, he gave me a big smile and a giggle as he saw me.  I’m not a morning person, but saying “good morning” to Koan is almost always a bright spot.  As I’ve said before, he’s so genuinely excited and happy most of the time, it’s a contagious feeling and a great way to start each day.

I went about making my breakfast — a bowl of cereal — doing my best not to make any “clanking” sounds that would be upsetting to Koan.  Adrienne was working to get Koan’s meal ready, too.  He had a cup of infant cereal mixed with three containers Yoplait yogurt.  Koan is such a creature of habit.  He will scoot out of his room every morning, but as much as he loves breakfast, he will almost never travel to the kitchen.  As soon as he can see his feeding chair in the kitchen, he stops.  He knows that we’ll pick him up and carry or walk him the rest of the way to the chair.  I think if we really worked on this, we could modify this behavior, but he’s really stubborn and it’s just not that pressing of an issue yet.

Koan and I finished our breakfast about that same time and I began to get ready to leave for work.  As I was heading out the door, I realized that my keys (both for my car and school) were not in my coat pocket as I expected.  They weren’t on the counter where I usually leave them.  After about ten minutes of frantic searching, I broke down and called Jeri.  It was about 7:00 AM.  She didn’t have kids coming in yet, but they would start arriving and need supervision within 20 minutes.  Luckily she answered her cell — not a sure thing that time of day — and I asked if she had seen my keys.  After initially saying, “No”, she checked her own pockets and discovered that she had inexplicably taken my keys as well as her own.  She was apologetic. I was frustrated.  I knew there was no way for her to come back or even somehow meet halfway.  If I wanted my keys, I would need to travel the fifteen minutes to and from (about 30 minutes round trip) Franklin Middle School. I live within a mile of my workplace, so my commute is less than five minutes.  This realization added to my frustration.  I was already behind where I wanted to be in my morning and adding 30 minutes to that was making me less and less happy.  

I called into the basement to wake up my oldest son, Tiber who is 16 and has a car.  He does not usually get up until about 7:45 AM.  So, I get to spread my unhappiness to him as I let him know that he needed to wake up and drive me to work.  After much grumbling, we headed out. As the door closed, I hear Koan erupt — this is not routine behavior and he is sure he’s missing out on something and being left behind — not cool!

Once I arrived at work, I put out the normal Monday morning fires.  I decided that I did want my car for the day, so I asked one of my techs, Chris, to drive me to Franklin to get my keys. Chris graciously agreed to help and we headed over to Franklin.  When we arrived there, I texted Jeri and she met me at the door.  I could tell that her morning was also off to a great start as she asked if we had room to take a few of her 6th graders with us back to Prairie.  Chris and I were nearly back  — on Kirkwood Boulevard, just seconds away from the office — when my cell rang.  

It was Tiber.  He was speaking fast and I couldn’t  understand him.  I finally got the keyword from him — “Convaid”.  Koan’s Convaid is his wheelchair that we use to move him to, around, and from school.  It’s essential.  He must have it to function.  I also realized that Jeri and I had taken Koan to the mall last weekend to shop.  We had put the Convaid in Jeri’s van and it was still there — back at Franklin.  So, I had Chris drop me at my house.  It was about 8:30 AM and Koan’s bus would be arriving in seconds.  I told Adrienne to wait for the bus and let them know that I’ll be dropping Koan off at school myself.  I grabbed Koan — who was already in his coat — snagged his backpack and the two “anti-tippers” we need to put on Koan’s Convaid for school.  We remove these when we travel as one of us always has a hand on the Convaid and they make it hard to collapse the Convaid.  But, at school, they need them as he is sometimes left on his own and he might tip over.  Koan is like Tigger — he likes to bounce!  And, even with the tippers, he can really move the Convaid.  This is an issue we will have to deal with in the not too distant future.

As I put Koan in my car, he was ebullient.  To quote my friend Buddy Berry, he was both surprised and delighted — he has realized that he gets to do something special, better than an ordinary day. He was dancing all over the place, making it a real challenge to load him and secure him into the backseat of my Civic.   After I retrieved and cleaned my glasses (he had knocked them from my face), I threw the rest of the gear in the car and head out.  But, I soon realized that I’m nearly out of gas.  Like everyone, Koan has his own idiosyncrasies.  One of these is that he has an active, personal dislike for the Kum and Go convenience store near our neighborhood.  This has been true for years and has been the topic of many discussions.  No one knows why he hates that place.  We’ve all learned to avoid it when he’s in the car if possible.  However, there’s no choice now.  As happy as he was to leave in the car with me, he gives me several shrieks of outrage when he sees me pull into the left turn lane to enter Kum and Go.  

After I fill up the tank and sing a few verses of Wheels on Bus (I’m sure the other morning commuters could hear me…), we hit the road for Franklin, yet again.  The rest of the trip there is uneventful.  Koan is, again, thrilled to be on the road.  I retrieved the Convaid from the van and squeeze it into the trunk of the Civic — a tight fit.  As we head back on Kirkwood Boulevard, there’s a point where we can turn to head back into our neighborhood.  I happened to glance back at Koan as we passed this corner.  As we went by, his face lit up and he screeched with joy.  He realized we were not going back home, but somewhere else.  As we went through the roundabout at the south edge of the Prairie campus, he started rocking back and forth, shaking the car — we are going to school — his favorite place!

By the time I get parked in the handicapped accessible spot in the Prairie Ridge lot, there’s a full-on dance party in the backseat.  I extricate the Convaid from the trunk, expand it, affix the tippers, and hang his backpack on the handle.  I then began the non-trivial task of getting a “dancing Koan” out of the back seat of an economy sedan.  We rolled in the door a little before 9:00 AM — just about the time elementary classes begin.  As I came into his classroom, he was enthusiastically greeted by the paraprofessionals in the room and the other kids.  His teacher, Stacy (who is also awesome!) says, “Did he get the stomach bug that everyone else in the class got this weekend?”  So, I guess we might we have that to look forward to later this week.  As you might expect, when Koan gets sick no one in our house is happy.  But, that’s a story for another day…

Feeding Koan

As Thanksgiving draws near, and it’s a holiday celebrated around a meal, I thought I’d share some day to day details about living with Koan — particularly food.  As I’ve said before, Koan is nonambulatory and also can’t (or won’t) feed himself.  He does love food.  But, it’s up to his caregivers to get the food ready and to feed him.  After ten years, we’ve gotten into some habits related to feeding– some good, some not so good.

Koan loves meal times.  Words about food, meal names, and even certain types of food need to be spoken very carefully if Koan is around.  A misplaced suggestion of lunch or a reference to feeding will send him into spasms of excitement.  Koan is feed in a custom-made feeding chair.  It is really cool.  It’s very adjustable, and we can change the configuration to make it fit him better as he grows.  There’s a large wooden tray we can attach to the front.  The tray is notoriously messy.  We try to keep it clean, but there always some type of food left on it somewhere despite our best efforts to keep it clean.  We can belt him into his chair seat as well — although that never happens.  We’ve had this appliance for the last six or seven years.  I’m not sure what we will do when he does finally outgrow it.

We ran out of yogurt yesterday at home.  This is a pretty big deal because that’s Koan’s primary food.  For his evening meal most nights he gets a cup of infant cereal mixed in with four cups of Yoplait yogurt. That’s what breakfast often looks like, too.   If there’s a yogurt flavor that Koan doesn’t like, we haven’t found it yet.  We don’t buy anything with banana in it because Jeri can’t stand the smell.  But, that’s our only restriction. On a typical week during the school year, we’ll buy eight packs (8 units) of Yoplait a week for him.  When summer is here it’s even more.  It’s not uncommon for us to completely deplete a store’s shelved supply of Yoplait in one trip.  I often joke (sort of) that I need to invest in Yoplait so we can recoup some of our spending with them.

A few years back, our wonderful private occupational therapist got Blendtec to donate a really awesome blender to us.  The idea was that we could blend up whatever we were having for supper and give it to Koan.   We had no idea the value of this device until one of our friends recognized it from the “Will it blend?” YouTube series.  I had no idea this was even a thing.  I’ve since watched a couple of these videos– they blend iPhones, golf balls, marbles, etc…  the Blendtec shreds them all with little trouble.  After viewing these, I was a little worried (and frankly, I still am) that my oldest son, Tiber, will get ideas about running his own “will it blend?” experiments.  But, so far, we’ve been able to impress upon the entire family that the Blendtec is only for Koan’s use and that rule has stuck.

I don’t typically spend a lot of time on guilt.  But, our lack of use of the Blendtec this is one case where that’s true. It’s such an awesome tool and we just don’t use it enough.  But, it’s so much faster and easier to mix up a yogurt meal for Koan.  Particularly after a long day of work and school.  Everyone is tired and the routine feels exponentially easier to execute than to bust out the Blendtec.  We know he’s going to enjoy the yogurt, and it will fill him up.  While Koan’s not a really picky eater, like everyone there are foods he does not enjoy.  It’s really a bummer to blend up some food only to find that Koan has no interest in pureed chicken noodle stew or some other concoction.  It’s so much easier to whip up a meal I know he’s going to like.

As I’ve written before, we’ve needed to put Koan back on anticonvulsant medication.  I’m not sure if it’s the medication or Koan just being Koan, but we’ve not seen a seizure since the day after Labor Day (knock on wood).  The medication we give him is a liquid.  We had noticed as we got closer to giving him a full dose twice a day (it took about a month to get ramped up to his maintenance dose) that Koan would drool, cough, and gag for several minutes after we gave it to him.  We figured it tasted pretty bad.  So, we started mixing the medication in with his food.  One particular evening, I decided to try something new.  I mixed up a batch of chicken fried rice and ran it through the Blendtec for Koan.  I mixed in his medication, but it didn’t dissolve well with this food.  Koan didn’t like this arrangement and refused to eat.  Jeri got home as I was feeding Koan.  And, she grabbed a portion of his food and ate it to try and model that it was good — and because she was hungry, too, and she likes chicken fried rice even if it’s blended up.  But, she apparently got a glob with a lot of medication on it.  The look on her face was memorable, to say the least.  I’m taking her word for it, but apparently, Koan’s medication does indeed taste awful.

Thanksgiving is the one time of year, however, when I’ll know we’ll use the Blendtec for sure.  Like any Iowan, Koan loves mashed potatoes and gravy, stuffing, and turkey.  And, I’m sure he would eat an entire pumpkin pie by himself if we let him.  And, while I’m all in favor of him eating more quantity of food and greater variety, I do have some mixed feelings, too.  The more he eats, the heavier he becomes.  It would be great if he would finally realize that he has all the tools he needs to walk independently or at least get into and out of his feeding chair on his own.

Act on Iowa Medicaid

As I’ve said before, there so much joy and wonderment that comes with having a person like Koan around. But, there’s also a fair share of worry, too.  At the end of October, Amerihealth Caritas announced they were leaving the Iowa Medicaid program.  This is a big deal and will impact tens of thousands of Iowans.  Koan won’t be directly impacted, yet.  One of the hardest things to do when caring for a person like Koan is to figure out how to navigate and coordinate services.  So, I thought I’d write a bit about how all of these systems work from our family’s perspective — understand that I don’t have all of this figured out.  But, more importantly, I’m going to try and explain why the Amerigroup defection could impact Koan and what you can do to help him going forward.  

A couple of years ago, the Branstad administration put forth a proposal to privatize the Iowa Medicaid system and moved it through the legislative process. In this new system, the Iowa legislature removed most of the Iowa of Department of Human Services (DHS) ability to administer Medicaid.  And, they gave Medicaid management to three private companies (with very similar names): Amerihealth Caritas, United Healthcare, and Amerigroup.  These three Managed Care Organizations (MCOs) would be responsible for providing services for virtually all Iowans who need Medicaid.

The MCOs were given a flat rate for each patient annually (a per capita spending limit) and the thinking was that this plan would not only be more cost-effective because it controlled spending, but the quality of care would be better due to market pressure to provide good service.  It’s hard to argue with either of these points.  But, good ideas are not worth much if they are not implemented well.  Medicaid is a big umbrella program.  It covers both low-income and disabled people — a large, diverse population.  It’s a really really complex, multifaceted system.  I would argue that Medicaid is also a high-reliability system — like a bridge or a nuclear power plant. There’s very little room for error — it must work correctly and predictably all the time to fulfill its main function. There’s little or no room for large-scale, iterative improvement.  

The full conversion to the privatized system was done in less than six months.  This rush to implement is a key factor in why the program is performing so poorly.  What makes this particularly frustrating is that the fast track to rollout was done to minimize political pain and not with the wellbeing of constituents in mind.  Each of the MCOs has lost tens of millions of dollars and Iowa has needed to dip into the State’s “rainy day” savings fund to subsidize and keep the program afloat in both of the last two fiscal years.  Even more troubling is that mismanagement by the MCOs has cost lives.  Disability Rights Iowa has a pending class-action lawsuit against the State of Iowa based upon several deaths related to MCOs inability to provide services.  The personal stories I’ve heard from people who rely upon the MCOs are horrifying.  Essential services such as medication and other medical treatments being denied in long drawn out exchanges that sometimes take weeks.  It’s costing the taxpayers more and it’s directly responsible for loss of life. By any (and every) measure that matters, the privatization of Medicaid in Iowa has failed.

But, like many things with Koan, in particular, issues are not black or white or cut and dried.  To further complicated matters, when the privatization took place, the legislature left a very small segment of Iowa Medicaid in place.  And, because he’s anything but typical, Koan was able to stay enrolled in what was left of Iowa Medicaid through a program called, HIPP — Healthcare Insurance Premium Program.  The way it works is that we keep Koan covered under our private insurance and anything that Wellmark (my insurance provider) won’t cover, Iowa Medicaid will pay for with prior approval.  So, for example, Wellmark will typically pay for about $1,200 of Koan’s AFOs (leg braces).  Iowa Medicaid picks up the other $1,000ish.  In addition, we receive a monthly check (proportional to Koan’s portion our Wellmark premium) as an incentive to stay in the program (to keep Koan on our plan).  We’ve been enrolled in HIPP since Koan was born, and it has worked really well for us.  We’ve gotten what we need when we needed it.  This is a stark contrast from the experiences I’m hearing from friends who are now forced to use the MCOs.  We are so thankful that Koan qualifies for HIPP and we pray each July 1 that he continues to qualify to be enrolled.   

So, aside from altruism, why would I care about the privatization of Iowa Medicaid if Koan is not directly impacted?  It’s very, very hard to hear stories about individuals and families struggling with already complicated lives having to battle bureaucrats inside the MCOs for essential services.  So, it’s pretty easy for me to line up against this type of legislation just based upon that.  However, the main reason does come back to Koan.  We can only keep Koan in HIPP and Iowa Medicaid until he’s 26 (unless the US legislature makes changes to that provision in the ACA).  Eventually, if nothing changes, Koan would be part of this flawed system.  So, I’m starting work now to hopefully change the system for him and all of the others that are languishing under this terrible system.

My goal is that like many other states that have tried privatization, Iowa will reinstate its own Medicaid program again.  One proposal currently being considered is to move all medically complex disabled people back to Iowa Medicaid.  This would effectively decouple the low-income population from the disability population.  I fully support this concept as well.  So, at long last, here’s what I’m asking everyone who loves Koan to do:

  1. Please contact Jerry Foxhoven, the Iowa DHS director, and urge him to support moving all disabled people back under Iowa Medicaid.
  2. Local politics are incredibly powerful.  Engage with your Iowa House and Iowa Senate candidates.  To be crystal clear — I’m talking about specifically the Iowa legislators, not the federal reps like Grassley and Blum. It’s still good to talk to those type of folks, too, but they don’t directly influence Iowa law. When you vote in the 2018 elections next year, please ask your Iowa House and Iowa Senate as well as gubernatorial candidates their stance on privatized Medicaid. If they support this flawed, expensive, and dangerous policy, let them know you don’t approve.  Please consider voting for a candidate that opposes privatization of Medicaid services for disabled people.  

The departure of Amerihealth is an opportunity for the elected officials that initially supported privatization to re-think and re-evaluate the value of this program.  But, even if all disabled people were moved out of the privatized system, the Iowa legislature would also need to allocate resources to rebuild and refund Iowa Medicaid. Your voice and vote really matter.  I strongly urge everyone to get out and talk to your state rep and senator. Ask them not to support privatized Medicaid services for disabled people.  Please speak for Koan.

The Car Alarm

While there are so many wonderful aspects to living with Koan, I think the most difficult is navigating his inability to communicate.  I might change my mind on that in a couple of years as he continues to grow and get heavier.  But, having a nonverbal child for ten years is a real challenge. To be clear, Koan understands a bunch of verbal communication.  There are keywords and phrases we are very careful to use so we don’t confuse or upset him.  For example, if we are preparing to go somewhere (anywhere) and someone says, “I need to get my shoes.”  This will send Koan into paroxysms of joy — he is deducing that someone is going somewhere and he might be going out.  However, if he’s not going with us, we all have to work to choose our words very carefully to avoid dashing his expectations.  There’s a whole subset of words we don’t say at home unless we know for sure that Koan will be involved — bath, go, hungry, grandma, store, etc… I understand that at school they have similar issues with words like: recess, lunch, bus, and PE.  So, Koan understands a lot of language and he’s able to differentiate between contexts.  We can say bus or recess at home, and he won’t care.

What vexes me is not Koan’s understood language, but rather his expressive language.  It’s pretty clear to me that he has a lot of ideas and thoughts, but he has very few tools or ways to get them across.  He only has one sign he uses at home, “more.” We have an Oliver Twist moment every time we get him out of his feeding chair (regardless of how much he’s eaten).  And, it’s really heartwarming when we put him in bed each night with a hug and kiss and he signs for “more.”  But, I really wish he had more than that one word…

We don’t have access to (or frankly, the discipline to use with fidelity) his “yes/no” switches from school.  So, this particular deficit produces a ton of frustration for everyone.  Koan is very pleasant about 80%+ percent of the time.  He’s a joy to be around.  The other 20% of the time, he’s not as much fun.  I would guess that about 5% of his bad times are just bad moods.  We all have occasions where we are in a bad or unpleasant mood for no apparent reason.  The other 15% of unhappiness comes from not being able to tell us what he wants or what’s bothering him.  

We do a lot of structured guessing — “Do you need a new diaper?”  “Are you hungry?”, etc…  Again, many times, what’s bothering him cannot easily or clearly be answered with a “yes/no” question.   Occasionally, he’s just bored.  It would be great if he could tell us what would be fun, but we have to just try things — playing an episode of Sesame Street, singing to him, or presenting toys.  But, more often than not, we don’t guess right.  And, he becomes inconsolable.  When that happens, we usually give him some alone time in his room to calm down.  Then we start over, trying to guess what he wants.

While Koan is not verbal, he still does use his voice. Like most parents, we are pretty good at recognizing his themes or tones in his vocalizations.  We can tell quickly when he’s angry, sad, hurt, or thrilled.  One of the things we’ve learned over time is the stages of his frustration vocalization.  He will start off with his normal, sing-song vocalization.  But, when starts to get progressively more frustrated, he begins to produce a sound we call “the car alarm.”  It starts with a lower sound that extends out to a long, high-pitched yip.  It then repeats; just like the eponymous alert.

When “the car alarm” starts, the timer has started toward a full meltdown.  Everyone is on the clock to figure out what needs to happen to make things right.  We start with a simple, unwritten decision-tree type protocol.  Is it near a mealtime?  Does he need a new diaper? Does he want a new toy? Does he want to hear a song?  Should I pick him up and snuggle with him?  If you are thinking he’s training us, you would be absolutely right.  

Jeri has a much higher tolerance for Koan’s frustration.  She rightly points out that he has me wrapped around his pinky.  But, I think that the fact that Koan can (and does) manipulate his caregivers to get what he wants is a good thing.  It’s a successful coping mechanism.  I certainly hope he gets better at expressive language.  However, he’s successfully finding ways to get complex problems solved with tools he currently has.  I”m grateful for that.  That being said, it’s no fun hearing “the car alarm” go off at 5:30 AM on a Saturday morning.

Everyday Joy

The Tuesday keynote speaker at ITEC this year was Dean Shareski.  The title of his talk was, “The Relentless Pursuit of Joy.”  It was a good presentation.  Essentially, at the core, the big idea was emphasizing the importance of student engagement through a strengths-based approach: a great message.  The way to get there or the “how” was the pursuit of joy.  Shareski shared this early lip-dub produced in 2009 from Wartburg here in Iowa that apparently ignited this line of thought.  His ending call was that all educators need to make it a priority to design for or set the conditions that make joy possible for everyone in their classroom (including the teacher).  Again, great stuff!

As I filtered this through my own experience, I realized this presentation had helped me to articulate some new insights about Koan.  As I’ve said before, I wouldn’t wish a child with Koan’s condition on anyone else, but I would not change him.  I’ve tried to explain why this is the case many times before, but I understand why even more deeply now.  Shareski shared many, many brief examples of people experiencing joy.  It didn’t take me long to realize that I see that emotion all the time.  Koan is the most joyful person I’ve ever met. I no longer need to actively seek out joy (although I do), it’s with me every day.  

The brief, “bath time” clip is actually a very reserved expression for Koan. But, you get the idea — even the most mundane task is a reason to get excited.   He gives a joyful reaction when I come into his room each morning.  When I prepare his breakfast (or any meal), he exudes joy.  Koan loves, loves, loves, to go to school. So, the staff that gives him a ride to and from school each day get to share in his joy. Unsurprisingly, the transportation team loves him.   When I get home from work, without exception, I get a gleeful greeting.  He enjoys the bedtime experience, so we get a happy-dance then, too.  Going to Target or Hy Vee is also reason to celebrate in Koan’s world — any trip in the car.  His joy is contagious.  We overflow with joy in our house.  It’s an embarrassment of riches.

Of course, it’s not sunshine and flowers all the time.  We carry burdensome worry about his future.  Koan occasionally gets frustrated and he can’t tell us why.  That’s hard.  There’s also the difficult day to day tasks, lifting him, changing his briefs (not something I expected to being doing at this point in my life), bathing him, feeding him, etc…   Again, I would not wish the uncertainty, the drudgery, and the worry upon anyone.  But, joy is a priceless currency and our family comes out so far ahead in the emotional transaction.

The Wheels on the Bus

Koan’s favorite song is The Wheels on the Bus.  He’s loved this song since before he was one and he still adores it at ten years old.  While he likes music in general, this song is special for some reason.  And, like so many other things with Koan, I have no idea why this is the case.  Koan is a pretty good natured guy.  He’s always happy unless he’s not…  Of course, because he’s non-verbal, it’s really difficult for him to let us know what’s displeasing to him.  So, occasionally, he gets frustrated and upset.  And, loud, abrupt sounds can set him off, too.  The vast majority of the time when these things happen, a quick chorus of The Wheels on the Bus will calm him down — no matter the cause of the unhappiness.

Over the years, we’ve collected/captured a lot of different versions of The Wheels on the Bus.  A recent favorite version is a Cooper Tires ad that uses a version of the song.  Koan’s not a huge TV guy, but that gets his attention every time.  There’s a really high probability that if you walk into our house and say, “Alexis repeat!” You’ll hear Bert and Ernie’s Sesame Street version of The Wheels on the Bus come blasting from our Amazon Echo.  The Echo has really been a game changer.  It’s made it possible for us to hands-free play the song both preemptively and in reaction to situations where Koan might be upset.  For example, doing the dishes — the clank sounds of plates can get him upset —  or watching the Hawkeyes play.  Inevitably, Jeri or I will make some sort of abrupt exclamation (either of glee or dismay) that will startle and set him off.  This song is playing a lot in our house.

A couple of years ago, we found and bought him a toy — a school bus that when it rolls plays a version of Wheels on the Bus.  To our surprise, he was kind of lukewarm to this particular toy.  He’d play with it, but he didn’t love it or seek it out.  So, it went into the toy box.   Koan can’t really get into the box to get new stuff out.  So, when a toy goes into that container, we often forget about it. A couple of weeks ago, Jeri and I reorganized his room.  When we did that, we freed up some shelf space and we decided to put some toys on these shelves.  In this case, the shelves were low to the ground — within Koan’s reach.  We had been keeping containers of socks and pajamas there.  And, we were getting sick of gathering up socks and pajamas from all over his room each morning.  He would often get out of bed at night and dump these containers.  So, we decided to put some toys there instead.  We looked in the toy box and put the school bus on one of these shelves.  A new favorite toy was born…

Over the course of the next few days, we began to hear the toy’s version of Wheels on the Bus right after putting him to bed at night and early in the morning.  Koan has always liked bedtime and we’ve never had issues putting him in bed for the night.  But, he doesn’t stay in bed very long.  The last couple of weeks, we hear him playing with that toy within seconds of closing his door for the night.  In some regards, this is pretty cool.  We love the fact that he’s now more interested and playing with toys.  In fact, I’ve been playing a game with him the last few days.  I’ve been putting the bus in different locations in his room (all within his reach) each night.  He finds it every night.  

About a week ago, I put the toy on a shelf in a different area of the room — new location. In under 15 minutes, I heard the toy playing.  So, I opened his door to put him back in bed (a futile effort).  When I opened the door, I saw something I had not seen before with him.  He was sitting by the door with the bus under his left hand.  He was rolling it back and forth (this makes it play the song).  This type of intentional play is a big deal.  But, this was a snapshot moment where all the progress he’s made was really evident to me.  He might have been any child (without disability), sitting there rolling the toy around the room.  It was striking.  I wish I had taken a video or picture of it.  But, I’d guess none of the intangibles I was seeing would have translated to these media.  Still, it was a really cool moment, and I’m glad I got to see it.  I was left feeling that all was well and as it should be.  It’s curious how these littlest of moments can bring such happiness.

Strangers to Ourselves

We all change, shift, and grow as people over the course of our lives.  I recently read a summary of a longitudinal study of personality — monitoring the same group of subjects over sixty years.  This study found that a person’s personality and indeed identity shift so much over time (the study followed people from ages 14 to 77) that at seventy-seven year old, one’s personality looks so different from the fourteen-year-old’s perspective that the changes would render the person unrecognizable. We are all strangers to ourselves given enough time… Having a disabled person in your life accelerates this process.

By December of 2008, Koan was about 15 months old.  We knew with some certainty that Koan was going to face some really significant challenges that we had no experience on how to manage his condition.  But, much like the proverbial frog in the boiling pot (he doesn’t jump out because the heat increases so incrementally), these changes were not shocking or revelatory.  The process was so gradual that we just felt like it was just our new normal.  And, yet over these few months, Jeri and I had rethought and changed our beliefs about so many things.  I know by the end of that year, I was already a very different person. 

Looking back, 2008 was a wild year with Koan.  This was the year when we had to come to terms with the “why” question.  We spend so much energy trying to figure out why he had seizures.  This was a really reasonable approach.  Our thinking was that if we knew the “why”, we would have a better, more targeted (and hopefully, successful) treatment plan.  So, we looked into all types of possible different diagnoses.  He had two EEGs that year.  That’s the main test for epilepsy.  Each of these were really interesting…  While Koan was not very mobile, he still did not cooperate with the process of gluing twenty or thirty receptor-patches all over his head.  He also would not lay still on command as required for portions of the test.  Not surprisingly, the results of both tests were ambiguous.  He underwent a large battery of genetic testing, too.  All the tests came back with negative or inconclusive results.  By the end of the year, we knew we had a disabled child, but no idea why or what to expect.  After all the tests, it became clear to me that the why really didn’t matter — since he did not have a clear-cut diagnosis, there was no prognosis or standard mitigation/treatment plan.  We just knew at the end of that year, we had a kid that we needed to love and somehow set the stage to keep him moving forward — even with just small steps.

That being said, it was still a really painful and difficult process to live through.  To qualify for the Iowa Medicaid ID (Intellectual Disabilities) Waiver, we needed to have Koan psychologically evaluated for development.   Jeri and I chose to do this at the University of Iowa’s Center for Development and Disability.  The staff and psychologists there were great — very caring and compassionate.  But, there’s no denying it’s very tough to sit with someone for 90 minutes answer question after question about what your child cannot do.  Even though I thought I was ready, seeing the written report — Koan was chronologically 14 months old, but developmentally performing at 3-4 months — was devastating.  That document codified his condition.  It was real.

I look back now upon what I thought and how I acted when raising my older two kids, Sydney and Tiber.  I spent a lot of time worrying about them.  I know this is normal and natural.  But, from where I’m at now, it seems like such a waste of energy.  Sydney didn’t crawl and walked late — about thirteen or fourteen months.  Since she was our first child, these weeks seemed to draw out very slowly.  But, of course, she did eventually walk.  And, now, no one looks at here and thinks –”Oh… I bet she walked later than other kids…”

Tiber was bit more of a challenge.  He still has some issues expressing himself verbally.  Speech therapy has been really helpful for him.  Tiber also needed some help with attention (medication) when he was in elementary school.  But, like his sister, he’s very, very bright.  The problems Jeri and worked through with Syd and Tiber did demand our attention and focus.  But, looking back the emotional investment I made in these issues was disproportionate to their intensity or importance.  I think about that a lot going forward.  It’s not like Sydney and Tiber don’t have problems crop up.  Some of these are quite serious and demand a lot of attention.  But, my filter for what we get really worried about is now (and I think forever) changed.

I’ve written a lot about perspective shifts.  Having Koan in our lives has made me more present and grounded.  He’s changed my thoughts about disabled people, their value, and what we need to do as a society both morally and ethically to support them.  But, probably more so than anything else, having Koan in my life has given me a deep and perpetual understanding of what really matters.  I think the old saying goes something like this, “The key to life is not to sweat the small stuff.  And, everything is small stuff…”  I’m not suggesting that I don’t spend time and energy on worry.  I wish I could say this was true.  But, the minimum threshold of what I worry about is really different.  I spend (or at least really try) more time being grateful what’s going well than worrying about all of the things that can and have gone wrong.