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Lightning Bugs and Lightning Bolts

Small details can make really big differences in the lives of disabled people.

Koan -- a couple of years ago in Caroline's Cart
Koan — a couple of years ago in Caroline’s Cart

One of my favorite quotes is from Mark Twain.  When asked about the importance of word choice in the writing process he said, “The difference between the almost right word and the right word is the difference between a lightning bug and lightning bolt.”  I’m convinced that nuances, the small things, make disproportionately big differences.  I’ve found this to be true both professionally and personally.  Details are important.  In fact, many times they are what matters most.

As I’ve said before, Koan loves to get in the car or van and travel.  It’s amongst his favorite things to do.  This has shaped all our lives in some interesting ways.  There are certain words we are very careful using if Koan is within earshot: go, take, leave, store, shoes, socks Target, Hy Vee.  Koan loves going to the grocery store.  I realize that “shoes” and “socks” don’t really fit the other words, but he’s learned that if I say, “I”ll get my shoes on.”  That means I’m going somewhere (and he thinks he should, too).  Koan also has a habit of removing his socks (and losing them).  So, if someone says, “Get socks for him.”  He also very often correctly surmises that we are talking about his socks in preparation to leave.   There are other tells as well.  If I turn on the light above our hall closet, the one that holds coats and hats, Koan interprets that, often correctly more times than not, that I’m planning to leave.  If I put on a hat — either a baseball cap or stocking cap — that’s another sign that I’m going out and again it’s possible he might as well.  So, there’s reason for him to get excited.

It’s striking how fast these words and actions grab his attention.  He can be fully engaged with a toy or interacting with another person, but if he hears one of those words or sees one of the actions– he whips his head around and often will let out a shriek of joy. That’s all fine and good if he’s going with me.  But he does occasionally fall prey to false-positive interpretations.  For example, when it snows and Tiber and I go out to shovel.  Then there are just contextual mistakes where some of the keywords come up in conversation.  And, of course, there are just times when I’m leaving, but he doesn’t get to go (the most cruel circumstance of all!). Koan’s disappointment is harder and harder to manage as he is getting older and bigger.   Our Amazon Echo is a lifesaver in these situations.  Being able to quickly say, “Alexa, play ‘Wheels on the Bus’ by Bert and Ernie (Koan’s favorite version)” is a game changer.  The voice activation is really important.  Sometimes my hands are full.  Sometimes my phone is not within reach.  Being able to use my voice is super-helpful.  This is a great example of a little change, a detail, that has a really big impact.

So, going to the grocery store is a big deal.  As Koan has gotten bigger, we’ve had more an more trouble making this happen.  A couple of years ago he became too big to fit into the child seat built in the standard shopping cart.  It was not really comfortable or safe to put him in his own cart — in the main compartment.  It’s also difficult, not impossible but a lot harder, to load him into his Convaid.  Using the Conviad or even a second cart is particularly problematic if I (or Jeri) are going solo — ie… just one of us with Koan.  We were so fortunate that around the exact time he was getting too big to manage, an enterprising and brilliant person in Alabama came up with a solution — and got this to our local Target: Caroline’s Cart.  This is amazing and it makes me so happy!  Without it, we would probably only take Koan to the store once a month.  Caroline’s Cart removed a really significant barrier.  One of the reasons Koan likes going to Target so much is that just about each trip someone recognizes him and talks to him.  He’s the rock star in our family.  It seems like everyone knows Koan.  It’s really normal for people Jeri and I don’t know to approach and call Koan by name.  My larger point is that this cart makes it possible for Koan to meaningfully integrate into our larger community.  Without this detail — just two carts at our local store — Koan’s life is really different.

We are so incredibly fortunate to have such great support from the Arc. If you not already done so, please consider making a contribution to the Arc March in Koan’s name.  So much of what we get from the Arc are big things– like respite — that also make a big impact.  But, within these essential services, there are high-value nuances.  We’ve been blessed to have the same respite worker for over a year now.  Adrienne really feels like part of our family.  She’s amazing and her insights into Koan are so valuable.  This week Koan has not been all that interested in his meals.  I’ve seen this in the evening and Adrienne has noticed this each of the mornings this week.  Koan “chipmunks” his meal — he opens his mouth for more food, but has not swallowed the previous bite(s).  It’s pretty frustrating to feed him when he does this.  It takes a lot longer and it makes a mess — inevitably what he does not swallow comes out on to his hands, shirt, face, etc…  Yesterday for breakfast it was particularly bad.  He only ate about a third of his meal.  This is pretty unusual.  I talked it over with Adrienne this morning.  She suggested adding some Miralax to his breakfast because she suspected he might be constipated.  Not to go into too much detail here, but this is a  problem that most non-ambulatory people struggle with occasionally.  Jeri and I had already talked about that possibility last night, but the fact that Adrienne came to the same conclusion (and action step) without much prompting is so helpful.  It’s awesome to work with people who “get” Koan in this way.

 

It Takes a Team

Koan cute

This picture is a couple of years old now.  I like it because it reminds me of a time when I thought that Koan getting into toliet paper was cute.  As I’ve shared here many times before, his obsession with bathrooms is no longer photo-worthy, cute, or appreciated.  But, that’s a type of progress, and I’m thankful for that.  In this photo, you can see a little of our home’s layout and thus glimpse some of Koan’s routines.  Just to the left of the front door is Koan’s room.  The doorway with the toilet paper coming out of it is our half bathroom.  Each morning when Koan gets up, he’s set on the floor by his bed.  He then scoots out into the entryway and (eventually) into our great room and kitchen.  I say eventually because on this trip he makes a point, each time, to stop and see if the bathroom door is shut.  If not, the fun begins.  It’s a huge bonus for him if someone has also left the toilet seat up.  The fun (and mess) really ensues then.  And, it’s not unheard of that he will sometimes will get a bath (among his most favorite activities) if there’s enough of a mess.  So, there’s incentive for him to go big!

Just beyond the half bath door, to the left is the doorway to the master bedroom and nested inside there is the master bathroom.  This is can be the Holy Grail for Koan.  There needs to be a confluence of events for this to work out for him.  But, it happens more times than it should.  First, the master bedroom door must be left open.  Then the master bathroom door must be ajar.  Finally, the toilet seat needs to be up.  When this all comes together, it’s big-time fun!  Because the master bath is so far away from the great room and kitchen, we can’t hear him.  So, he can be in there enjoying himself for quite a while.  Usually, he’s found out when someone realizes it’s too quiet.  Then the investigation starts.  Usually, there are groans and rolling of eyes when one of us realizes that someone left all the doors open.  But, again, this level of independent (and albeit naughty) play is a sign of real progress.

So, again, the picture captures a time when we were just happy that Koan was mobile.  I’m excited by what will be next in his progression.  But, like most things with Koan, the growth is rarely linear.  Last year, he met and even exceeded his IEP goals for mobility.   However, he’s regressed this year a bit.   In the previous school year, he used a “Crocodile” walker.  This is a device that only had supports for his forearms.  This year, he refused to use it and had to go back to the older walker model that gave him hip support with belts and straps.  As I’ve said before, the team that works with him at Prairie Ridge is so great!  His teacher, Stacy, worked with the physical therapist from the AEA and developed a theory that Koan was not as interested in walking because one of his legs was slightly longer than the other.  We confirmed this in a recent trip to the University of Iowa Children’s Hospital.  However, the difference in leg length was due to the fact that the tendons in his left foot/ankle were a little tighter than the right.  So, when looking at him and even functionally for walking, this was making his right leg longer.

Stacy and Colleen, the AEA PT, contacted (with our approval) Tucker, the wonderful prosthetic specialist from Hanger Prosthetics.  Koan’s shoes are made especially for his leg braces (AFOs).  So, they need to be carefully measured and special ordered.  Jeri was thrilled with the last pair we’ve received because the shoes look a lot more like something a little boy might actually wear and not institutional garb.  Tucker was really excited to show them to her when we got the last set.  I liked them because they are Hawkeye black and gold.  But, these shoes are medically necessary and quite expensive.  So, this is also another great example of how the public, fee for service Iowa Medicaid model works so well.  We never have to hassle with the approval process.  Our insurance covers some of the cost and HIPP/Iowa Medicaid picks up the rest.  This is a great deal for us and for Iowa taxpayers.

So, far the reports have been largely positive regarding Koan’s mobility with the new shoes.  I don’t think he’s been back in the Crocodile yet.  He has a few months of bad habits to unlearn.  But, it sounds like he is really making strides (pun intended).  Hopefully, he can get back to where he was last spring before the end of this school year.  It takes so many systems and caring people to keep him moving forward.  I feel so blessed that he is surrounded by such great people.

 

Waiting for Results

I am Medicaid IowaA few weeks ago, I wrote that we had asked for approval from our insurance provider to do some additional genetic testing on Koan to see if they could pinpoint the cause of his disability.  The good news is that we have been approved for more testing.  We got approval on a Friday and I took Koan down to the University of Iowa Children’s Hospital on the following Monday to do the blood draw.  I wasn’t sure what time the lab closed at the hospital, so I figured it would be best to get him down there before 4:00 PM.  I was assured that we would not need an appointment to do the draw.  Here’s the story of that day.  There’s nothing earth-shattering here.  There are some cute moments and the rest is just day to day “life with Koan” anecdotes.

I arranged to pick Koan up early from school that day — around 3:15.  It takes about 30 minutes to get to the hospital from the Prairie campus.  Koan’s school day normally finishes around 3:45 PM. He was in the office waiting for me when I arrived.  It was great — when he saw me come in the office he flipped out.  There was an ear-splitting screech of joy and a great deal of happy-dancing in his Convaid.  He nearly jumped out of it.  There was so much commotion that the building principal stuck her head out of her office to see what was happening and to make a joke.  Stacy Pasker, Koan’s teacher, told me later that she heard him, too, and knew that I had arrived.  It’s pretty fun to get that kind of greeting.

I packed him into the car and folded the Convaid into the trunk.  As we exited the Prairie campus, I turned right coming out of the roundabout on Kirkwood and headed south.  Koan was already having a full-blown dance party in the back seat of the Civic (shaking the whole car).  As I did this, he took it to a new level because he knew we were not heading home.  Like his old man, Koan loves to go to Iowa City.  So, as we got on the ramp to  380 south, became even more excited.  I actually thought he might pass out or hyperventilate.

By the time we got to UICH, he had calmed down a bit.  I navigated the Civic through the underground parking ramp and found a handicapped spot a couple of levels down.  I then got the Convaid out to the trunk and set it up.  It’s always a bit of wrestling match getting Koan out of the Civic. It’s much easier to move him in and out of the van.  Not only is he tall and rather heavy now, he thinks it’s great fun to swipe the glasses off of my face while I’m using both hands to reach down and wrangle him out of the backseat.  This can be a chess match.  I try to find ways to pin one (or if possible) both of his arms so he can’t get to my face.  This particular time, I was able to restrain the left arm (his most dangerous weapon), but he cleverly used his right to swing across and connect with my nose.  To both of our disappointment — I was unhappy he hit me and he wanted to see the eyewear go sailing — my glasses were merely displaced (pushed to far right of my face and precariously dangling from my nose).   I also grabbed the #IamMedicaidIowa sign I had made.  I wanted a picture of Koan in UICH to share.  The #IamMedicaidIowa was a media campaign organized by Disabilities Right Iowa.  I would encourage everyone who cares about Koan to participate.  It’s super-simple.  Just take a picture with a homemade sign.  You don’t need to be disabled or a caregiver.  DRI has even provided all the text you can use to share.

I dropped him in the Convaid.  Straightened my glasses and strapped him down.  As always, I started with his feet (so I don’t get accidentally kicked) and moved up to his belt and arms.  We then wheeled to the elevator to get into the hospital.  When we arrived on at the lab doorway on the second floor, a friendly lab tech motioned us to come inside.  I explained that we didn’t have an appointment, but that genetic counseling had requested a blood draw.  He looked us up in the workstation and found the order.  I started unbuckling Koan from his shoulder straps.  I would need to take off his coat so the tech could draw blood from his arm — at the crook of his elbow.  Koan was still pretty amped up from our trip, so it was clear that we were going to need more help if the tech was going to be successful in drawing blood.  So, I let him know that and he called into a back room for some help.

Like most of us, Koan does not love needle punctures.  In the past, when he’s gotten a significant shot of medication he has given me (and Jeri if she’s there) a monumental look of betrayal when the stick happens.  Then there are tears and howls of outrage.  So, I was a little worried how this would go.  The two young ladies, med students I’m guessing, came in from the back of the lab to assist the tech.  That was perfect!  Koan loves the ladies — and for the most part — he’s popular with them, too.  He immediately starts flirting with them, coyly smiling, giggling, raising his eyebrows, etc…  Each one of them took arm to hold.  They also reciprocated the flirting — telling him how cute and handsome he is, etc…   This worked like a charm.  The needle went in, but Koan was so busy with the two students that he didn’t even realize he’d been poked.

After taking out several vials of blood, the tech removes the needle and bandaged him up. Koan was still having fun with the two lab assistants.  At that point, I asked one of the techs to hold up the #IamMedicaidIowa sign in front of Koan so I could snap a picture.  Fortunately, one of them agreed to help.  I then put Koan’s coat back on and buckled him fully into the Convaid for the trip back to the Civic.

When we arrived back at the car, I saw that in my haste to get Koan secured in his Convaid and up to the lab that I had left the back door open.  So, the whole time we were up in the lab, the back door of my car was wide open.  Luckily, nothing was taken.  We repeated our chess match while putting him into the car.  That time around, I fully won with no blows landed to my face.  Koan was pretty worn out from all the excitement and that made the trip home a bit easier and less dramatic.

I don’t know how long we’ll need to wait for results from this test.  I would imagine it will be several weeks before they will get back to us.  I’ll share information here when we do get it.  I will be pretty surprised if he doesn’t come back with at least some Angelman markers in his results.  But, who knows… Koan has a long history of being unexpected.

Teacher Note

I just got this note (below) from Koan’s teacher, Stacy Pasker.  She (and the whole team at Prairie Ridge) are so awesome!  This story is really great…

 On Friday, we were reviewing our letter of the week, V, and I was asking the kids to find it on the letter board.  Koan was rocking this!  He would 2 finger point to the V every time.  We tried to catch it on video and Koan decided to hit everything but the V.  Put the camera away and he was back to just touching the V.    
Later we were working on finding the word “mom” on the board.  Again, Koan was rocking this until we brought out the camera and of course he stopped.  Put the camera away and he was back in business.
In the afternoon, we had reverse integration and we were playing Cooties with some of our 4th-grade peers.  Koan was watching the kids roll the dice (we use a large one) and when it came time for him to roll, he picked the dice up and rolled it just like everyone else, he didn’t throw it.  We were so excited!  He did it again on his next turn too.  So we tried to be sneaky and pull out the camera so he couldn’t see it on his next turn.  He picked up the dice and one of the other kids says “She’s going to record you!” His eyes got real big and he looks around, sees the camera, puts the dice on the table and just sat there waiting us out with a big ole smile on his face.   
I asked him “Koan, do you want to show mom and dad how smart you are?”  His response “no”.  “Koan, do you want us to put the camera away?”   Koan – “yes”  So we put it away and he went right back to rolling the dice.  
He had a definite opinion about being recorded on Friday.  Took us a little bit to catch on, but eventually, we realized we probably should have asked him if it was ok first.    Lesson learned! We will try asking first and hope he is in a mood to show off his skills.
He has so much more going on than he can show.  It’s just like his waiting for the bus on winter vacation — hilarious and heartbreaking: bittersweet.  How frustrating it must be not to be able to express thoughts and ideas.  I don’t even want to imagine.  And, yet, Koan smiles more than anyone I know.

Arc March 2018!

The Arc March is upon us again!  It’s on St.Patrick’s Day this year.  So, I’m guessing there will be green shirts this time around.  As I’ve said before, Koan’s life would be exponentially more complex and difficult without the Arc of Eastcentral Iowa in our lives.  The before school respite care is really essential for us.  That’s what makes it possible for Jeri and me to continue to both work.  The care workers who have come into our home have been 2nd to none!  There are also so many other wonderful quality of life opportunities.  Koan attended the Arc’s summer camp for six weeks in June and July.  It was truly amazing.  There were so many of Koans favorite activities: swimming, playing at parks, eating… None of this is possible without support from the greater community.  So, please consider making a donation either directly to the Arc or you could use Koan’s donation page located here:

https://www.firstgiving.com/fundraiser/craig-barnum/2018-arc-march

Please share this link as well if you are so inclined.

The Costs of Bloody Noses

Koan with a bloody nose

So, most — probably all — of the pictures I’ve posted of Koan on this blog are pretty cute.  This one, not so much.  The last few days were difficult at work for me.  We had an issue with our network at school that was impacting about 25 people.  That’s not too bad considering we support about 8,000 devices on our network each day.  But, the folks impacted by this disruption were all of our office secretaries and our payroll staff — a really bad group of people to have unhappy.  So, I was putting in a lot of hours in the evening and over the weekend to figure out what was happening.  Last Saturday, I went into the office to work.

Unlike most people, Koan doesn’t really enjoy weekends.  He doesn’t hate them, but frankly, school is much more interesting and fun than being at home.  So, when he saw me gearing up to go out, he let his feelings be known that he thought he should go with me.  And, of course, he was rather upset when I left without him.  I was working away in our data center when I got a text from Jeri with this picture.

Apparently, Koan cried himself into a bloody nose.  He had scooted around the sofa to see me out the door, and as everyone expected, cried when I left.  Jeri started Alexa playing the Sesame Street version of Wheels on the Bus to calm him.  When the song finished he was done crying and she looked up to and saw what’s in the picture.  The Barnum men all seem to have some proclivity toward bloody noses and clearly, Koan is no exception.

There’s a long history now of Koan having these events.  There was the time three or four years ago when we were driving to Omaha for a brief family trip.  Koan was in the middle row of the van.  Jeri and I were in the front seats and Sydney and Tiber were in the back.  At some point during the trip, Tiber happened to notice that Koan had quietly had a bloody nose. He never cried or let on that he was uncomfortable.  By the time we noticed it, the car seat looked like a murder scene complete with bloody handprints all over the van passenger window.  Luckily windows were pretty well tinted in that vehicle, but I still shudder to think what people in other cars and trucks may have seen before we cleaned everything up.  Later on that same trip, he had another bleeder in the hotel room.  Again, I’m sure the cleaning staff had some questions (probably concerns) despite our best efforts to tidy things up.  I half expected to get a call from the Omaha PD.

Koan’s most infamous bloody nose happened in January of 2015.  Right around bedtime (a little after 8:00 PM) on a Saturday night, his nose started to bleed.  Unlike most times, he seemed upset by the event and was crying, hard.  This, of course, made his nose bleed even more.  He even had blood coming out of his mouth.  There was a lot of blood and normally I don’t get too frightened by these things having had them myself, but this one scared me.  So, after a few minutes of not being able to calm Koan and slow the bleeding, we decided that we would take him for a drive in our van.  That’s a sure fire way to improve his mood.  And, we figured if the bleeding did not stop, we would head to the emergency room.

As soon as we got him in the van, his entire demeanor changed.  He was happy and very shortly — after just a few blocks the nose bleed stopped. Because we were so worried about him, Jeri sat in the middle row seat with him on her lap.  As we approached downtown Cedar Rapids on the interstate, Jeri indicated that we should pull over so she could get him (and herself safely buckled in).  I then, now famously said, “Sure, but I don’t plan on getting into an accident.”  I got off the interstate on the A Avenue exit and started to work our way home.  Again, Jeri asked to stop.  I looked at the gas gauge and realized we needed fuel.  So, I decided to stop at the Casey’s on the corner of 8th Ave and 2nd Street — right near the NewBo district.  Both of them could reposition and we would fuel up at the same time.

After we filled up, Jeri buckled Koan into his car seat.  But, she decided to stay in the middle row to keep an eye on him until we were home.  I was just happy that our stop at Casey’s had not infuriated him — Koan has an inherent dislike of gas stations — particularly the Kum and Go in our neighborhood.  But, he was fine with this stop.  I began the trip back home by heading into NewBo.  We hit a red light on the corner of 12th Ave and 2nd Street.  I normally would turn right on to 12th Ave to go home.  It’s slightly faster.  But, I decided this time I would go forward on 2nd Street and cross the river on 16th Ave and go through the Czech Villiage.  It would take a little longer, but Koan would appreciate the extra drive time, and it’s a little more interesting scenery.

The 16th Ave bridge is the oldest in town.  It’s very narrow with only two lanes of traffic — one each was.  As I pulled on to the bridge, I noticed a car, a compact station wagon, (the only other car on the road I could see either in front of me or behind me) make a right turn on to the bridge.  The driver made a really wide right turn, ending up in my lane.  I didn’t worry about it too much.  No one else was around and it’s a pretty long bridge.  There was plenty of time for that person to get back in their own lane.  But, as I got about halfway across the bridge, I was alarmed to see the other driver still on my side of the road and not slowing!

I had enough time to slow the van nearly to a stop and to yell back at Jeri and Koan to hang on.  The Subaru Forrester hit us head-on.  There was nowhere to go — the middle of a two-lane bridge — concrete and water on both sides.  The airbags deployed.  Glass, shattered plastic, twisted metal, and the burning smell from the airbag discharge covered me.  I yelled back to see if Jeri and Koan were ok.  After checking her self over and Koan, Jeri indicated they were both fine.  Luckily for Jeri she didn’t get to experience the impact of the airbag in the middle row.  That was much nastier than the actual impact.

I turned off the van’s engine and pushed my door open.  I was dinged up, but didn’t see any blood so I thought I was ok.  I started striding to the other vehicle.  It was still rolling backward from the impact.  I thought other driver might be trying to leave the scene.  Such was the adrenal rush, that I threw my van keys and whipped the baseball cap off my head and started running at the Forrester.  This is the only time in my life where I experienced true primal rage.  I was ready to kill or be killed.  Luckily for me (on many different levels) when I got to the driver door of the Forrester, I could see the person who hit us was an older lady.  I’ve never been in a true fist fight as an adult, but I’m sure I would have dusted up if the other driver had been male — regardless of size.  That probably would have gone badly all the way around.

Despite the fact it was January, it was a beautiful night — about forty degrees.  We had left the house in such a hurry none of us had coats.  So, we sat out on the bridge and waited for the police to show up. Koan flirted with all the people out walking around that night (and there were many). I didn’t spend much time with the other driver, but it was really clear that she was significantly impaired — alcohol or drugs.  So, I just tried to stay away from her.  When the police arrived and saw the scope of the damage — neither vehicle was drivable — they called an ambulance.  I had some minor cuts and a few bruises — mostly from the airbag.  It looked like Koan and Jeri were completely untouched.

When the paramedics arrived, we had to spend a good bit of time convincing them we were all ok.  It took even more time with Koan.  Of course, he’s non-verbal so we had to answer for him –and they weren’t sure they could trust us as we were pretty shaken, too.  But, worse still — Koan was covered — much like the picture above — in blood from his bloody nose earlier.  So, they needed a lot of assurance that he was indeed ok.

Our van was totaled and we had to get a ride home in the back of police car.  Koan thought that was pretty great!  The rest of us, not so much.  Last Saturday I confirmed that Koan was ok.  Jeri let me know the carpet might not be the same again.  My main thought was, that’s ok — at least we won’t need a new van this time.

 

 

 

The Koan Action Network — Please Sign Up!

http://www.kcrg.com/templates/2015_Sub_Video_Share?contentObj=468170003

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…