Blog

Remember in November

Koan in art class

I really like this picture.  It was taken at Prairie Ridge during art class this spring.  The class was doing chalk outlines on the playground. While Koan can not reciprocate by drawing his partner’s silhouette, he clearly enjoyed the experience of having his done.  It’s a simple thing, but I love this example of inclusion. The other child who drew his outline (you can only see the hand and chalk in the photo) looks like they took some time and put some thought into the process.  It also meant they had to get into Koan’s personal space. As adorable as I think Koan is, he does look and act differently than most ten-year-olds. The fact that there was another child willing to do this with him warms my heart.

From a bigger picture lens, that’s one of the main things I want for all of my children: meaningful social interactions with others.  It seems like that’s a pretty important part of being happy. Up until this point, we’ve been really blessed with numerous, small but significant events to fill Koan’s life with this type of activity.  One of my overarching worries for him is wondering what will this look like as he gets older. Right now, our family provides a lot of this, but we also get incredible support from organizations like The Arc.  Koan will start summer camp in June — seven weeks of full days — swimming, going to the park, making art, etc… It’s these types of small, inexpensive experiences that make life worth living. And, all of the programs offered by The Arc are funded in part by Medicaid.

I hate to sound like a broken record, but Medicaid is so crucial to Koan present and future.  There’s an ongoing Medicaid crisis in Iowa right now. Our most vulnerable populations — the disabled and children — are being grossly underserved by the privatized managed care organizations running Medicaid.  People are dying! What’s more, not only is this program failing to meet even the most basic care needs of the people it serves, it is more expensive to run (costing all Iowans more in taxes) than the previous state-run program.  

Those who know me, understand that I don’t like to participate in partisan politics.  I’m a centrist and independent philosophically. But, after continued, persistent communication with Governor Reynold’s office, I am convinced by her actions (or lack there of…) that she and her administration has no intention of meaningfully reforming or removing the disaster that is privately managed Medicaid in Iowa.  After watching the Democratic gubernatorial primary debate, I am also convinced that whoever wins that race will make removing privatized Medicaid a top priority. So, I’m going to do something I rarely do, I’m urging anyone and everyone I know in Iowa to vote Kim Reynolds out of office in November.

I hate the fact that our current system has painted me into a corner where I need to make a partisan plea to preserve the future for my child.  System supports like Medicaid should not be subject to partisan politics. And, honestly, I really don’t think there are many people who want to endanger Koan by implementing terrible programs like privatized managed Medicaid care.  But, perhaps if we all send a strong enough message in November, all candidates for office (regardless of party affiliation) will realize that programs like Medicaid should be preserved in order to align with American and Iowa values.

Difficult Conversations

Koan at UICH

Last fall, I had a conversation with one of my best friends about Medicaid and Social Security Insurance (SSI).  My friend (I’m not going to name names, but most who know me can figure out who it is…) was (is) philosophically opposed to government involvement in healthcare.  To give additional context, I love this person like a brother. He would be the person I would use my one phone call on if I were ever in jail. I trust him implicitly.  He and his family have done so much to help my family over the years. But, this difference in philosophy (which for Koan is a true existential threat) is really difficult for me to square.  Frankly, it’s not an easy thing to talk or write about.

My friend is a smart, caring, and a generous person.  He believes very strongly in individual rights, freedoms, and responsibilities.  From what I gathered, he believes individuals should be self-reliant and that many social programs are not only fiscally wasteful but have a corrosive effect on human agency.  He has developed his opinions about Medicaid and SSI filtered through this type of lens. As you might guess, he’s not extremely supportive of either program.

During our conversation, he said something that has stuck with me ever since.  I asked the question, “Do you believe our government bears responsibility for caring for vulnerable and disabled people like Koan?”  His answer was another question, “Yes, but to what extent…?” At the time didn’t know how to process this type of response. It was, as you might imagine, a rather heated (but still civil) conversation.  I regret that didn’t give him a very coherent response. I would guess that like me, his views on the topic have evolved since our conversation. He’s a really bright guy. But, as I’ve reflected on his question, it’s clear to me that his question was chalked full of misunderstandings about what Medicaid and SSI are and how they function for people with disabilities.  After all, how could he know the “ins” and “outs” of these complex systems? I’m still learning to navigate them myself after ten years of experience. But, I’ve been unpacking this conversation in my head for months. I’d like to give a written response here in the hopes that someone else may find it useful.

I’m certainly no expert on Medicaid and SSI myself.  But, over time, here’s what I’ve come to understand about why they are so essential to Koan.  Medicaid programs are funded by the federal government, but the actual programs are administered and run at the state level.  In other words, the Feds provide the dollars and States determine how to spend them. It’s a complex layering of policy and bureaucracy.  

Much of our need is dependent on Jeri and my goals for Koan as he grows up.  As I’ve said, before, we want Koan (and all of our kids) to be healthy, independent, and happy.  For Koan, we believe that means living a life outside our home, probably in a group home setting.   To make this happen, we will need significant assistance from Medicaid and SSI.  We would hate to see him living in an institution.

The first really significant thing to understand about this plan is that for Koan to qualify for these essential services as an adult, he can have almost no assets to his name.  He has to live below the poverty line. If he would personally receive money, property, or any other assets that pushes him above the poverty line, he will no longer qualify for these services.  Maintaining this balance takes really careful planning to ensure that he will be able to enjoy a life worth living.

Social Security Insurance (SSI) will give him only the barest of necessities — a few dollars for rent, food, and essentials each month.  It will be incumbent upon my family to make up the difference so he does not live in squalor. We can add these supplemental touches to his life as long as we are around (alive).  Once we depart, we’ve setup a special needs trust that one of our surviving family members will need to execute to keep up with Koan’s needs. So, my family (and any family that has the means) will always carry a really significant financial burden to support Koan.  So, our existing system has some very strict limits in place to keep spending of public dollars down.

Koan will need basic health insurance to cover ongoing healthcare needs once he’s an adult — some that are specific to him like mobility appliances (wheelchairs) and sanitary adult diapers as well as other more mainstream services that all of us require as we age.  But, the day is coming where Jeri and I will no longer be able to physically care for Koan. The big question is what do we do then? Again, we hope that he can live in a group setting, not an institution. If we are able to find him a group home, his SSI benefit might cover rent and very, very basic living expenses.  This assumes we can find a provider to take him at what the SSI rate pays. To ensure a satisfactory arrangement, Jeri and I are strongly considering purchasing a house for him and working with a care provider to manage it. This makes the college tuition payments I’m making for my older children seem downright reasonable.  

In Iowa, we fund Medicaid for individuals at two rates: one for people who live in the community and one for people who live the two state-run institutions.  While I don’t have the figures in front of me, I can say with certainty that the institutional rate is much higher. For most people with a disability, institutional living is a pretty bad deal.  They don’t live as long and are often far less happy. The sad irony is that here in Iowa, the privatized Medicaid system has cut so many community living programs that it has forced many disabled people back into the more expensive and lower-quality life of institutions.

If Koan keeps on his current developmental trajectory, he will require 24-hour care when he grows up.  He will need assistance with feeding, sanitary needs, and mobility. These services will come from Medicaid.  Again, it’s less expensive to do this in the community rather than in a state-run institution. In addition, my family will likely supplement the cost for this type of care and remove even more burden from taxpayers.  We’ve engaged with a financial planner to create a life plan for Koan. This includes saving money for his anticipated living costs, working through new life insurance policies to seed his trust.

In all my years of visiting with people about Koan, I have not run into any people (and I’ve talked to many from all across the philosophical spectrum) that don’t believe it’s our government’s duty to care for vulnerable disabled people.  No one will admit to wanting to go back to the days when the only thing available was grossly underfunded, understaffed, and unsafe institutions. But, that’s where our current policy direction is taking us. It’s clear to me that most of our local, state, and federal policymakers don’t understand this either.  At the Ask Iowa Together We Can conference in May, Rylin Rodgers said something to the effect that people with complex medical disabilities are the “canaries in the coal mine” for policy change. When policies cut funding, this population feel it first and most acutely. She’s right on the money! This is why this philosophical debate is really an existential threat for Koan and people like him.

So, to sum it all up:

  • The government SSI benefit is incredibly frugal. People with disabilities are getting only enough funds to live at our current poverty level.  
  • It costs more to for a disabled person to live in an institution than it does to live in the community.
  • Institutional life is bad for most people.
  • Families and caregivers have a tremendous financial stake in the care of a disabled person.
  • Families are looking for a commitment that our government will continue to fund these programs at appropriate levels to maintain these very minimalistic services (which would be impossible for ordinary families to sustain on their own).

I would ask that everyone reading this consider asking your state representative, your state senator, as well as your federal representative and federal senators their position on these programs.  In Iowa, any response that supports the current privatization of Medicaid is a bad answer. And, policymakers should be called out for supporting bad policy. On the federal level, any policy that reduces the SSI or Medicaid funding also almost certainly bad policy.  Asking these types of questions in town hall meetings or other “meet and greet” encounters really has a huge impact on how the officials think about policy. So, if you go to such things, please speak up. Of course, I would also ask that you vote your conscience on these issues in November.

Finally, aside from the altruistic desire to do the right thing for vulnerable people, why should the average person care about this issue?  What most people don’t think about is that any one of is is just one accident away from being fully reliant upon these types of services, too.  A traumatic injury to the brain or spine would put an able-bodied person in Koan’s shoes instantly. It could be me, you, your spouse, your child, your mom, or your brother.  It can and does happen to anyone. So, you don’t need to be the parent or caregiver to a person born with a disability to care about this issue. At its core, these types of safety net programs are around for the same reason we all need insurance (health, home, auto, or life).  They provide peace of mind and are there just in case the unimaginable happens. Supporting Medicaid and SSI is in all of our best interests.

Presume Potential

Koan at the inclusive playgroundLast week I had the privilege to attend and present at Building Bridges, an assistive technology conference at Grant Wood AEA.  For the past couple of years, I’ve really focused a lot of my professional energy on accessible educational materials (AEM) and Universal Design for Learning (UDL).  The big idea behind both of these frameworks is that when schools provide baseline assistive technology tools to all kids — everyone benefits.  For example, at Prairie, we provide all students with a tool called Read&Write for Chrome.  This powerful tool gives kids access to a great screen reader (it will read digital text to kids) and a powerful speech to text engine (kids speak and it will type for them).   Without getting into deep educational theory, the core concept is that these tools allow all kids to choose the style that works best for them (regardless if they have a disability or not) and for the kids who must have these types of tools to access learning — it removes the stigma of being different because everyone uses them.  We are doing some exciting, bleeding-edge work along these lines at Prairie.  I was there with the rest of our AEM leadership team to share our story and practice with other area schools and educators.

Two years ago, I had the opportunity to attend a special ed conference put on by the Iowa Department of Education.  I attended this conference as a member of SEAP — the Iowa Special Education Advisory Panel.  My role on SEAP is to represent parents.   At this conference, I attended a breakout session by an IDoE staffer named Maggie Pickett.  Maggie was talking about universal design and assistive technology.  After this session was over, I had the realization that I had been perpetuating a malpractice in regards to assistive tech.  I, like many others in my role, viewed assistive tech as a student-based, consultive model.  I would only get involved with AT when called upon by a consultant from the AEA or some other organization that provides services.  Maggie helped me see that AT is good for all learners.  In fact, we’ve gone on to publish a monthly podcast, Friendly Disruption, to provide learning about AT to other educators.

The main reason for relating these professional details is to make it clear, that while the conference was about assistive technology, my focus was professional and not personal.  While Koan would certainly benefit some from his teachers considering UDL when creating learning, for the most part, his disabilities are so profound that he still requires much more intensive and individualized tools.  That being said, Koan is still the genesis for all of my work along these lines.

The keynote speaker at Building Bridges was Kate Ahern and the theme of her talk was presuming potential.  Kate is an expert in Augmented and Alternative Communication (AAC).  These types of tools are used for people with really profound disabilities.  People like Koan.  So, I quickly shifted from professional to dad as I listened.  Her core message was so powerful — presume potential!  If you assume the person fully understands you (even if they can’t show it), you make the safest assumption.  If the individual does not understand, you are still modeling the desired behavior.  But, if they can understand, you open the world to them.Presume Potential Slide

This is one of my most profound hopes for Koan as he moves through life.  I hope that all of the significant people he encounters presume his potential.  This idea, at least in my mind, presupposes so many things that are highly important to me — respect, dignity, compassion, and even accountability.  It’s an oversimplification to say I want him treated like everyone else because frankly, I don’t.  He has real and significant disabilities that do make his needs different.  But, I do want all meaningful people in his life to presume his potential for everything.  Assume he can do it until he demonstrates otherwise.  Model the behavior or action we want to see from him.  And, most importantly, persist in doing this even when it seems like it’s not working.

Jeri and have been really blessed that Koan has had a number of people in his life so far that have done this for us. In fact, Koan’s teachers, paraprofessionals, and therapists at school have been far better at this than we have as a family. I find that as a parent/caregiver that sees him every day, it’s all too easy to do things for him just to get things done.  It is hard to find the right balance between his needs and everyone else’s needs.  The simple truth is that I need to get better a presuming his potential.

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.