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.

DHR Guest Post — Happiness, Good Health, and Independence

This post is a guest article I was asked to write for the Iowa Department of Human Rights.  They were interested to hear some thoughts on employment of disabled people from a parent/caretaker perspective.  As Koan turned ten this week, I’ve already been thinking a bit about what the next ten years (and beyond) will look like…

Koan, my youngest son, has global developmental delays.  He is ten years old and doesn’t walk, talk, or feed himself.  No doctor or specialist has been able to tell us why these delays happened.  We named him for the answerless riddles or parables that Zen monks meditate upon to reach enlightenment.  We gave him this name before he was born and long before we knew he would face these types of challenges.  It is, of course, a very fitting name.   While it’s been a wild, wonderful adventure raising Koan, I do have some anxiety when I think about what his life will be like after he is finished with school.  To be fair, I have two other children who are not disabled, and I worry about them a lot, too.  

My three main goals for Koan are happiness, good health, and for him to be as independent as possible.  While I don’t want to over-simplify anything, these are really the same goals I have for all three of my kids — including the two without disabilities. These global concepts have really helped my spouse and me in our decision making processes.  We are now better able to focus on the important, big-picture items, and we don’t get bogged down in the unimportant details and minutia. This clarity of purpose has been of the many great gifts Koan has given our family.  

I’ve spent a good deal of time thinking about what life will look like for Koan once he completes his K-12 experience.  I find that I need to resist the temptation to over plan or over think his future.  I certainly do want to be prepared for whatever opportunities he may wish to pursue as he gets older. And, of course, because of his disability, we need to a lot more thoughtful about his future — setting up a trust, launching an ABLE spending account, looking into group living options, etc…   But, at the same time, I also don’t want to pigeonhole him or put him down a path that’s not right for him but makes sense to me. Just like my other kids, he will need to find his own path.  We just need to give him space and time to do that.  I can provide some guidance, but just like with his brother and sister, it’s really on him to figure out what he wants to do and how to leverage and take advantage his strengths.  I merely hope to set up the circumstances to make that possible.

One of the main characteristics of independence, at least in my mind, is employment.  Ideally,  for Koan this would mean competitive employment.  Having a meaningful job not only contributes to financial stability but it, more importantly, gives meaning and purpose.  It instills a sense of confidence that only comes from doing real work.  That feeling of “mattering” ripples into all sorts of other roles in life that have a tremendous impact on well being, too. Competitive employment is one of my highest and most rigorous aspirations for Koan.

While I’m not ready to lower my expectations, I also need to acknowledge that Koan may not be able to attain the goal of competitive employment if he stays on his current developmental trajectory.  And, if he doesn’t reach that milestone, I hope that there are other, non-competitive, employment opportunities available for him.  A “sheltered workshop” should certainly not be the first choice for anyone with a disability.  But, that type of non-competitive environment can provide a great deal of social interaction and meaning if a competitive job were not an option.  What I know about Koan as a ten-year-old is this —  he would find a lot of joy working and interacting socially with others even if it were on tasks that others might find less meaningful.  So, my hope is that when Koan finishes school he has a full array of options and opportunities available to him.  And, again, this is really not all that different than what I want for all of my kids.  

10 Years!

I’ve spent most of my time with this blog looking backward.  I find that reflecting on what’s happened gives me access to insights and even some wisdom.  But, for the next couple posts, I’m going to look ahead.  Tomorrow, Wednesday, September 13th is Koan’s 10th birthday.  Like all children, it doesn’t seem possible that he is that old.  I can’t really remember what life was like before he came or even what I was like.  Koan really did ruin everything… in the nicest way.  

And, while I’m starting to really think more and more about what life will be like 10 years from now (I’ve been asked to write an article for the Iowa Department of Human Right about employment of people with disabilities — I’ll post that here first, of course), tomorrow is a really important day for Koan’s short-term future.  Unfortunately, Koan is having more frequent seizures.  We’ve seen five seizures in the last six weeks.  So, for his 10th birthday, Koan gets to go the University of Iowa Children’s Hospital and visit with the pediatric neurology team.

While for most 10-year-old kids, this would be a real bummer of a way to spend a birthday, Koan will have a great time.  He’ll get to take a trip to Iowa City — he loves going there.  And, he’ll get to see a lot of new people who will dote on him tell him how cute he is (which he is…). So, he’s going to have fun.  As for me, not so much…

The seizures we’ve been seeing lately are a bit different, in terms of intensity, that what we’ve seen over the last couple of years.  We had a great run from about the time Koan was four months old til about age six — no seizures at all.  When he was around six we started to see about one a quarter.  Koan was never diagnosed as a full epileptic, but he did have an abnormal EEG, particularly during his sleep cycle.  So, these seizures almost always happen at night or very early in the morning.  These events were very intense and rather long (10-15 minutes) grand mal episodes.  They would put him out of commission for about 12-18 hours afterwards, too.  He would be pale and very lethargic afterward.  The last few seizures we’ve seen (the last three in particular) have looked and sounded like what all of the others, but he seems fine after a couple of hours of rest.  So, he’s recovering much faster.  I’m not sure if that matters at all.  But, it is a change.

I really have no idea what the care team will recommend for him.  I certainly don’t want to start another run of anticonvulsant medication for him.  But, I suspect that’s pretty likely, however.  I’m worried that whatever they give him (again if we decided to do this) will change his personality — slow him down — mute his expressions of joy.  I’m also concerned that any medication may further hinder his development.  And, like most medications, there’s a therapeutic target zone for these drugs that’s pretty hard to stay on top of with growing children.  So, there will always be doubt in my mind if we are in the “sweet spot”.  I’m honestly hoping we can find a way to not medicate him.

That being said, last spring a colleague I work with on SEAP had her adult child with disabilities (he was in his late twenties) passed away due to complications from a seizure.  He was a really high-functioning guy, competitively employed, literate at the 1st grade level — a very important milestone.  This was a very unexpected.  He, like Koan, was not diagnosed with epilepsy but did have a seizure disorder.  So, I know the seizures that Koan is experiencing are nothing to trifle with and need to be treated.  

Understandably, I’ve been thinking a lot about the appointment tomorrow.  It does seem fitting that we would have it on his 10th birthday.  I wonder if we’ll be entering a new chapter in Koan’s story.  The circumstances sure feel that way.  I suspect tomorrow is just the beginning.  And, that’s a daunting thought: tests, medications, uncertainty.  But, as Joe Strummer said, “The future is unwritten…”  So, I really don’t know what’s going to happen next.  As always, we’ll take it a step at a time and a day at a time.  

Future Proofing

I think about future proofing a lot in my profession.  When we bring some new equipment or software into the schools, I want to be sure I get good value.  I believe it’s wise to “buy up” most of the time so we are not forced to replace quickly.  Basically, I don’t like “band-aid solutions” that only fix problems for the short term.  I’ve trained myself over the last eighteen years in this role to behave strategically.  This habit of mind has served me really well and made me pretty successful at what I do.  But, it’s been a real barrier when parenting Koan.

As I’ve written before, preconceptions can really get in the way of doing the right thing for someone like Koan.  So, I am working continually to reshape and redefine my thoughts along these lines. But, there are some important practical considerations that must be addressed.  Jeri and I just finished revising our estate plan and setting up a trust/life plan for Koan.  Normally, this type of work would be right in my wheelhouse.  But, given the general unpleasant nature of this former task — contemplating the world after my own death — the complete uncertainty of the latter — what Koan will be able to do and what the world will look like when he’s an adult — made this a really difficult.  We needed to write a letter of intent for Koan — a projection of our wishes for him in 10, 20, 30, or 40 years.  As with most challenging work, it was worthwhile and full of opportunities to learn.  And, as I get older, I realize that these types of challenges that involve learning are so rewarding and meaningful. Ultimately, they bring great joy.   It’s funny, I don’t look forward to these types of processes and I may even feel dread before starting, but as I’m engaged I find there’s something empowering and affirming.  I don’t want to go into detail extolling the power of life-long learning — something I believe in very much.  But, there’s no denying that having someone like Koan in my life as provided a much more active and invigorating learning environment for me.  That’s truly a gift.

But, there’s something else that’s complex about future proofing for Koan for me personally.   The really difficult part is grappling with uncertainty.  We just don’t know at what level Koan will be capable of functioning in the future.  I have spent a lot of time worrying about various scenarios — imagining worst cases.  Trying to figure out how to avoid these.  This is a precursor task to do something like a letter of intent.   Given my profession, this is a very comfortable and familiar style of thinking.  And, while it’s not worthless or completely counter-productive for Koan, it’s a game of diminishing returns.  These future obstacles are good to be aware of, but should not be dwelled upon.  Certainly, the negative emotions of worry and fear don’t help anyone, me included.  The way I dealt with this up until very recently was rather simplistically and antithetical to my default style. I would say to myself — “No one is guaranteed another hour, day, or week.”  Basically avoiding the negative thoughts by thinking the future is unknowable.  This was helpful.  It did make me focus much more on the present and the moment.  As a strategic thinker by nature, I do have the tendency to live more in the future than in the present.  Again, this was a gift Koan has given me.

The recent work to start codifying our hopes for Koan’s future has made me understand that my previous way of looking at things for him — only focusing on the present — is insufficient.  I need to work to develop a new set of skills.  It’s not responsible or right for me to only think about today for him and rely on my wits and the structures around me to work through emergent problems — which are what all problem are when you don’t plan.  I need to develop a hybrid perspective now.  I now must focus on more specific goals order to make this happen for Koan, but I cannot get sucked down the black hole of “what ifs” that are so counterproductive.  This will be an uncomfortable and difficult process.  I’m framing this as an opportunity to learn.