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Koan Can Not (be) Quiet, Too (2)…

Koan at the Arc MarchLast Tuesday evening (the day we got Koan’s diagnosis), I got home — super excited to actually talk to Jeri.  We had mailed and texted but not actually conversed about Koan’s new diagnosis.  I came in through the garage into our kitchen.  Jeri was near the sink getting supper ready and Koan was in our connected great room scooting about as usual.  The tv was on and tuned to some random Food Network show that Jeri will often turn on for white noise.  Koan does not like “kitchen sounds” metallic clangs, etc…  The tv helps cover that sort of thing up.  We started a having a really fast, high-level conversation and mini-celebration on the spot.  But, as normal, Koan did not wish to be left out.  So, again, as he so often does, he began to talk to us at the same time.  Soon, amongst Jeri and my conversation, the tv, and Koan singing, it was really hard to make sense of anything.  There was a cacophony of sound that made it super hard to make sense of anything being said.

Koan is not the only person in our family that has had an IEP (Individualized Educational Plan — the documentation schools use for special ed services).  I’m a diagnosed dyslexic and received special ed services throughout most of my K-12 experience.  It’s really not much of a hindrance anymore except in a couple of ways.  The main manifestation that still causes me to struggle is that I have a lot of trouble sequencing letters or numbers — spelling has always been a challenge for me — particularly if I need to do it out loud.  Throw in the sensory clutter from the tv and Koan and for the life of me, I could not get the correct sequence for Koan’s diagnosis when talking to Jeri.  When I complained about this, Jeri said, “Oh, that’s easy — Koan Can Not be Quiet, too.”  It took me a second to realize she was not commiserating with me, but rather that she had already come up with a totally apropos mnemonic.  It’s not perfect, but it makes it super easy for even my dyslexia-addled brain to process every time — Koan Can Not be Quiet, Too — KCNQ2.

Aside from the ongoing excitement, there’s really not a lot new to report.  We have two appointments scheduled, both on May 9th,  at the University of Iowa Children’s Hospital — one with neurology and one with genetic counseling.  We are hoping to learn more about KCNQ2.  I also suspect that we’ll also transition Koan to a new family of anticonvulsant, too.  There also continue to be small, but powerful delights related to this news as well.  For example, I just found out there’s a national caregiver/family and treatment professional summit for KCNQ2 on September in Anaheim, California.  That’s a really terrible time of year for us — the start of school.  But, it’s still really, really cool to think there’s a national group that is working on our specific cause.  Awesome!

I’ve also realized how thankful I am for this particular diagnosis.  There’s so much good news it holds — the de novo mutation (no one in my family needs to worry about this), there are no latent, hidden symptoms or problems waiting down the road, etc…  In addition, and I didn’t realize it until I found out the label — this particular diagnosis means that Koan is Koan.  I would have been just fine with an Angelman diagnosis.  But, with KCNQ2, we know that all of Koan’s smiles and his (mostly) cheery disposition are all him — not a genetic predisposition.   That’s a pretty cool revelation all by itself and makes the diagnosis an even more powerful gift.

Breaking News– The Diagnosis Is Here!!!

Koan with the Easter BunnyI’ll write more later, as I’m too excited to be truly reflective.  However, I just got word that our latest round of genetic test has yielded a definitive result.  Koan has a mutation on the KCNQ2 gene.  There is a spectrum of symptoms that come with this mutation, unfortunately, Koan is on the more severe side of the scale.  We believe Koan has Early Infantile Epileptic Encephalopathy (EIEE7).  If you want to learn more (like I do!) Check out — KCNQ2.org   Here are some salient points in the short term.

  • This disorder is not the familial variant — so it did not come from Jeri or me and better yet — Sydney and Tiber have no greater chance than anyone else of seeing this in their children.  They are guessing it was a de novo mutation — so completely random.
  • As side from his current symptoms, there are no new symptoms or other emergent problems we need to worry about in the future.  His life expectancy is as normal for anyone with a seizure disorder.
  • It sounds like there are a couple of families of anticonvulsant drugs that work better than others for people with KCNQ2.  So, we’ll be following up with his neurologist to be sure he’s on an optimal medication.
  • This is an international KCNQ2 community — including two other families in Iowa  (Victor and Bedford).

Again, I’m sure there will be more information and thoughts.  My head is spinning with all of the possibilities and revelations.

 

What’s That Sound…?

 

Koan Under the BedSo, this picture bears some explanation.  I still smile each time I see it.  I took it a couple of weeks ago on a Saturday.  Koan does not enjoy weekends all that much.  School days are much more interesting for him.  As with most kids, boredom often equals mischief.  On this particular day, I heard a strange set of sounds coming from our master bedroom.  Koan was talking.  He wasn’t in distress, but his voice sounded really strange.  It was unlike any sound I’ve ever heard him make.  So, I got up and investigated.  I just about fell over laughing when I saw his situation.  He managed to enter our master bedroom (a room he’s not allowed to access by himself) and trapped himself under our bed.  Yes, I did take time to take the picture before freeing him.  He got himself into that mess, so he rightfully, just like any other person, deserves a little mocking before being released.  Koan doesn’t or can’t (I’m not sure which it is frankly) move on his belly — he never “army crawls”.  So, how he got his head and shoulders that far under the bed while on his stomach is anyone’s guess.  But, he was truly and fully stuck — going nowhere.  This was a little like Koan’s “Leave It to Beaver” moment — the one where the Beav get’s his head stuck in the stairway banister.  Of course, this predicament was a little easier for us to solve.

What’s not as obvious, but nevertheless also undoubtedly true about this photo, is that it show just how much Koan has trained or modified the behavior of everyone in the family.  Over the past year or so Koan has developed a new habit.  He will cry and get upset everytime he hears a door close in the house.  I think there are at least couple of reasons for this that are pretty rational — even cleaver.  First and foremost, Koan associates the sound of a door closing with someone leaving the house — without him.  In his mind, this is a completely unacceptable outcome.  He so enjoys travel, that regardless of where someone is going, he wants to go every time.

However, in the last few months, he’s generalized his dislike of the “door closing” sound to all doors in the house — the basement door, any of the bedroom doors, the bathroom door, etc…  This is, as you might imagine, pretty annoying.  My guess is the main reason for this is that he also realizes that when a door closes — not only might someone be leaving without him, but almost as importantly (to him) someone has possibly, unilaterally restricted his access to movement throughout the house.  It doesn’t matter to him that this is by design — we don’t want him tumbling down the basement stairs or getting into the bathrooms.  But, here’s the interesting part,  his displeasure at this sound has subtly modified everyone else’s behavior.

Because, he hates that particular sound so much and we all know it, we’ve all developed our own set of coping skills.  Sometimes, I’ll try to shut a door so intentionally as to avoid making the sound at all.  Others will sometimes not latch a door (giving the door the appearance of being closed without being latched) — it’s the latching sound that he objects to.  And, other times, I think I’ve latched the door softly, but in fact, the door is not really latched at all.  All of these behaviors play right into Koan’s master plan.  One of his favorite pastimes is to scoot up to doors and push them to see if they are latched.  More times than you’d think, he succeeds in getting into a space that we don’t want him to access.  So, he’s trained us to let him misbehave — the twerp!

Part of my glee in taking the picture above is that he got a little dose of karma.  He got into a space he was not supposed to be in — he knew that, too.  And, he got stuck.  I find this is one of the great rewards of parenting, any child, when mischief reaps it’s own just reward.

Red Pill, Blue Pill, or a Crocodile?

Koan in the CrocodileLike the rest of the world, I was so sad to hear that Stephen Hawking passed away last week.  Even though I don’t do anything with sciences like physics or astrophysics, I always appreciated Hawking.  He so fully embraced his geekiness, it was hard not to like him.  I wasn’t really surprised to see a lot of outpouring of grief on my Twitter and Facebook accounts.  I did see a number of different posts and graphics showing Hawking leaving his wheelchair.  I think my favorite showed his chair in stark focus and a silhouette of Hawking arms and legs splayed out as if he was floating up to the moon.  But, as someone else pointed out, it also kind of looked like his wheelchair had come to an abrupt stop and he was tumbling out of it.  This made me smile as I suspect Dr. Hawking would have found this funny as well.  Something else came across my Facebook feed related to this topic as well that caught my attention.  It was an op-ed from Teen Vogue — not a publication that hits my timeline a lot.

This has been a topic I’ve been thinking about for a while, even more so with all of the testing we’ve been doing on Koan.  We did get permission to do the additional DNA tests for the various disorders related to epilepsy.  We did the blood draw for that a week before spring break.  I would guess we’ll hear something around the end of April.  I serve on the University of Iowa’s Center for Disability and Development’s community board.  Last December, I was relating to that group that I was excited that we were on a path to possibly finally having a definitive diagnosis.  The parents in the group all smiled, but one of the physicians respectfully asked why I was so interested in the label.  I told him that having a rough roadmap was very helpful — what should we expect next…?   Having a support group (I assume) would also make things easier.  While I don’t admit this very often, I still hold out a little bit of hope for treatment, too.

One of the thought-experiments I sometimes conduct goes something like this — if I could get access to a pill that would “cure” Koan — give him the ability to walk, to talk and to progress down a more typical developmental path, would I give it to him? I know for some, this must seem like a complete “no-brainer”.  But, I struggle with this.  It’s this dilemma that’s at the crux of the op-ed.  Does this type of change free Koan to become himself or does it effectively destroy his identity? If I able to take away the disabilities, do I remove his “Koaness” as well? I’ve written about this obliquely before.  Some of the things I now love most about Koan are inextricably linked to his disability.  This forces me to think of all sorts of uncomfortable questions: do I love is his dependence on me (that makes me feel really selfish)? Where does Koan begin and end? So, it’s kind of a “red pill/blue pill” question (from the Matrix) for me. Jeri and my guiding principles for Koan (and all of our kids) is the continued growth toward happiness, independence, and good health.  I still believe these are solid guideposts, but it’s not black or white/cut and dried. I want Koan to push past as many of his disabilities as possible without invalidating how they inevitably define him.  It’s an interesting line to walk.

On a somewhat unrelated note, we had Koan’s annual IEP meeting in early March.  As always, I’m blown away by the great team he has working with him at Prairie Ridge.  This has been an interesting year.  For the last couple of years, Koan has done really well with his mobility goals and he’s struggled with consistency with his communication.  That was reversed this year. He took a step back in mobility but made nice gains in communication.  We think his hips got out of whack this year due to some tightness in his lower leg muscles — causing one his legs to shorten.  Our awesome PT from GWAEA worked with our orthotic specialist to get a shoe insert to address this issue.  A few days after that happened, Koan actually scooted to his Crocodile walker (which he’s not used most of the year) and grabbed at it — to show that he wanted to use it.  Here’s a brief clip from that first walk.  So, he’s not totally off track.

 

While I’m very excited for him to move on to Prairie Creek, here’s a little fun fact.  Sydney, oldest Barnum/Mead child, was in the first kindergarten class to go through Prairie Ridge when it opened in 2005.  Next year, 2018-19, will be the first school year when there will not be a Barnum/Mead child at Prairie Ridge.

Diagnosis Update: He’s No Angel…

Koan with his chin on a table.

This is an update post in relation Koan’s genetic testing. I got the phone call yesterday afternoon from Lily, the genetic counselor at U of I Children’s Hospital.  She had barely finisher her “hello” before I blurted — “What do you know?”  I’ve been waiting for this call for weeks — since December.  The anticipation of a confirmed diagnosis had been getting harder and harder to bear.  But, of course, Koan has thrown us another curve ball.  He has none of the genetic markers associated with Angelman Syndrom.  I was really surprised.  Over the last few weeks, I had convinced myself that this was it — we were finally going to get a concrete answer.  Angelmans just made so much sense.  He looks like an Angelmans kid and has so many of their traits: he flaps, he has the emotional affect, he loves water, he’s mobility challenged, and he’s speech challenged.  That had to be it.   Nope!  Lily told me she was surprised by the results as well.  In fact, she said that given what she saw of him, she would have bet money that the results would have come back with a positive Angelmans result.  So, now we go to “plan B.”

We are going to continue to look for a genetic diagnosis.  The next set of tests we’ll run is a wide-sweeping panel of epileptic disorders.  This plan here is to take a concrete look at his existing symptoms (seizures) and start there.  This is also pending approval from our insurance provider.  So, we’ll keep our fingers crossed that they will approve this next test as well.  Assuming they do give approval.  We’ll need to get another blood draw.  But, unlike the last time we did this, it sounds like the lab has a service that will actually visit Koan’s school.  While that will be disappointing for Koan — no trip to Iowa City — I think it’s pretty cool.  So, if everything goes according to plan we should get results of this testing back in early May.  Lily indicated that when we get the results back for this testing, there will be three possible results: positive for a genetic epilepsy disorder, negative for all disorders, or inconclusive for one or more disorders.  Knowing Koan, I would lay odds on the inconclusive result.  That’s just his style apparently.  Actually, I think there’s a pretty good chance for an overall negative result.  His EEGs have never indicated anything definitive, just some anomalies.  So, from a physiological/electrical perspective, he’s never been diagnosed with epilepsy.  If the epilepsy genetic panels do come back all negative, we’ll move on to the next set of possible disorders and start the process again.

While I was initially disappointed, — it would have been awesome to get some answers — I’m not feeling all that bad now.  Just like his name’s meaning, I think there’s wisdom to be uncovered in not knowing.  Having an answer and a label would have been great:  support groups and a possible roadmap for what to expect going forward, etc…  But, personally, I’ve never felt comfortable letting others define who I am.  I’ve found it’s much more meaningful to grow my own identity.  Maybe this is Koan’s way of doing that for himself.  Don’t get me wrong…  I still would like to know what’s caused all of these issues for him. And, we are going to continue to pursue these answers as long as it’s feasible.  But, as with so many things in life, the process or the journey is more meaningful than the answer or end result.

 

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.