Wednesday, March 19, 2014

K's for Keegan catch-up & reminder

As apparently is my habit lately, here we are in late March, and I am finally putting together a quick K's for Keegan update after two marathons and the first triathlon of the year so far.  I would apologize, but I would doubt anyone expected any more from me at this point in my lackadaisical blogging.  Let's attempt to bring this thing up to speed.

In January, I ran the Houston Marathon.  A dear friend gifted me with a Run for a Reason charity bib through the National Kidney Foundation after the Dallas Marathon was cancelled.  The day was warm, and the race was well-organized.  I was able to catch the whole family, including the kids, at mile 14.  Gray and Alex's friend, Matt, found me again at mile 21, and then everyone was there at the finish to cheer me on.  Considering I had been training for over 20 weeks by that point, I hoped to have done better, but for a first-timer, I will take it.  Keegan crossed the finish line hand-in-hand with me, and that is a moment I will treasure for the rest of my life.

Hugs from Keegan over half-way in

Sure helped to hear these two yelling, "run, Mommy, run!"

Crossing the finish line together

The biggest surprise of the day came shortly after the race.  LaMonica, Keegan's donor's mom, happened to be in her hometown of Houston with the kids, and she came to surprise us at lunch.  Such a blessing and the perfect way to celebrate together!  

Then, it was only four short weeks before the Cowtown Marathon, and I threw in 15K in between.  Gray and I were able to make it to Fort Worth the day before the race and spend some time with two of our best friends, the Currys.  26 miles was a good way to spend my 34th birthday.  I know watching me run probably isn't Gray, Marci, or Todd's idea of spending the morning in FW, but it's been a tradition that means a lot to me.  Next year, I have my eyes on the ultra for my 35th!

I am still a proud member of Team Beads of Courage.
I carry beads with me for every race, and they remind me 
of the strength that Keegan and every child like him exhibits daily.
If they can do it, so can I.

I love the Cowtown race because I'm a bit of a lone-wolf runner.  I like that it is smaller and older.  It gives it a more personal feel.  However, the old-school ways sometimes come back to bite you.  Since Cowtown was the only local marathon after the Dallas cancellation that still had open registration (remember that Houston has a lottery that fills up immediately; I ran on a charity bib), the race was completely overwhelmed this year by the influx of refugee runners from Dallas.  I felt the strain after handing my gear check bag over at the chaos in the sheep barn.  I realized a few minutes later that I had accidentally checked my fuel belt with half my fuel, all my electrolytes, and my precious kleenex (I had been battling a raging sinus infection, fun times).  Since they don't organize bags at the check right away like bigger races, we couldn't find my bag.  With the world's most sensitive stomach and an unseasonably warm day, I left to run the marathon with only two gels and no electrolytes.  I made it through, mainly due to my awesome hubby and friends forcing me to stay positive and driving all over FW to hand me kleenex and encouragement. 

With the year's first two marathons under my belt, it was time to switch gears for the start of triathlon season.  We had a nice warm week, but then old man winter decided he wanted to rain on my parade one more time.  Literally.  On Saturday, a nasty cold front brought in a good amount of rain and wicked high winds, sustained at 25mph and gusts near 40mph.  Not the best conditions to be riding in while wet.  I buckled down and survived, managing to score an early spot at the end-of-the-year sprint invitational and placing 3rd in my age group on the run.  I almost ate it twice on the bike when the winds truly threatened to knock me down, and I learned my lesson on overestimating my swim time.  I will not let myself get stuck in a slow pack of swimmers again.  Oy.

Trying to block out the fact that I'm about to jump in a pool,
then run out soaking wet into 40 degree temps and 30mph winds.

I was pretty happy with the layers that I chose to get through,
especially compared to some of the other yahoos out there that didn't!
I do HIGHLY regret forgetting my toe covers for the bike.
The run felt like I had bricks for feet until mile 2.8,
when unfortunately there was less than half a mile left to go.

Wow, that's a rough picture.
I am not a beer drinker, but Gray truly deserved it after sticking with me during this one.
I would be lost without him.

Well, that catches us up on the year so far, but the most important race is coming up on the 29th.  That would be the Firefly 5K where YOU have the chance to officially join Team K's for Keegan.  We have a great team signed up so far, but we are always looking for more.  The Firefly is a night race where everyone wears glow-in-the-dark stuff to light it up and raise money for Children's Medical Center.  If you would still like to order a K's for Keegan tshirt, please let me know that also.  I must place the order by this FRIDAY, MARCH 21!!  Comment below or email me with questions.  

Please consider joining us and register today!

2014 is off to a pretty good start.  There's still plenty of work to do and lots of opportunities to spread the word about the importance of organ donation through K's for Keegan.  Thank you for your support and encouragement!  You keep us moving along!

Wednesday, March 12, 2014


Last week, Ron Suskind published an article entitled "Reaching My Autistic Son Through Disney" in the New York Times ahead of the release of his new book, Life Animated.  I am anxiously awaiting my chance to read it and have read his NYT article several times now through tears.  Please take the time to read it by clicking above because it will reveal something to you, even if all you know of our family is through this little blog.

This is Keegan.  

98+% of Keegan's speech is scripted from movies or tv shows.  Disney is by far his preference, but he won't turn down most good animation.  Most of the remaining speech is from scripts we have given him, i.e. giving him the words to ask for a glass of water, which he then repeats in the exact intonation we taught him originally.  

I will never forget the day when he was about 3 1/2 years old we realized Keegan's gibberish was actually words.  Monsters, Inc. was playing on the tv, but Keegan was facing the other direction.  He made sounds we had heard him say often at the time, "tees e a oo ed, ooh ahh ooh ahh ooh ahh."  But this time, without facing the tv, we watched him mime the scene with the sounds perfectly.  It's when Mike is training Sully in the morning before work.  "Twins in a bunk bed!" Then Mike mimes scaring kids in a top bunk, bottom bunk, back and forth, before falling flat on the floor.  Gray and I froze.  "Twins in a bunk bed!"  We rewinded it and played it again, and Keegan did it again and again.  

After the strokes and macrophage activation flare in September of 2011 that left him practically in a coma and robbed him of the little speech he had developed, he sunk deeper into his scripts.  Three months later, he received an autism diagnosis.  He technically has brain damage from medical trauma that mimics autism (each characteristic can be tied directly to an event on his brain scans), but the same treatments for autism work for Keegan, which is really all that matters.  At that point, I began to fervently research scripting and echolalia.  We were desperate because the only time Keegan was happy was watching his movies.  Even when he wasn't watching, there was a constant movie playing in his head, and we could rarely pull him out of them, back into reality.

A few months later, I tried jumping into one of his scripts from the movie Cars.  His speech was still mostly sounds and inflections with a few discernible words, but when you watch the movies as much as we do, you pick up on the inflections and context.  I don't remember what line it was now, but before Keegan could say the line, I knelt beside him and said it myself.  He looked me square in the eyes fully for the first time since that flare.  And he smiled.  His HUGE, beautiful Keegan smile.  We exchanged a few lines, and he regressed into a different script that I couldn't follow.  I sat and cried as he played around me.  It was his breakthrough.  The more we identified the scripts he was saying, the more we were invited into his world.  To this day, I must stop what I'm doing whenever I am doing it to be Pumba to his Timone singing "Hakuna Matata."

Keegan has not progressed nearly to the levels Owen has over the years, but I am hopeful for more as he grows, especially if we continue to learn with him.  Already, he has moved on to using his scripts in context when he needs to convey a need, want, emotion, or desire.  If he needs help, he doesn't just ask for help.  He is Pete in Mickey Mouse Clubhouse, "umm, guys, a little help here?"  But sometimes, his scripts are just a source of comfort for him.  A safe place he can go to escape.  TV or digital device unnecessary, there's always a movie playing in his head.

Now I have a clearer understanding of why.  Ron writes in the NYT article:
"But what draws kids like Owen to these movies is something even more elemental. Walt Disney told his early animators that the characters and the scenes should be so vivid and clear that they could be understood with the sound turned off. Inadvertently, this creates a dream portal for those who struggle with auditory processing, especially, in recent decades, when the films can be rewound and replayed many times.  The latest research that Cornelia and I came across seems to show that a feature of autism is a lack of traditional habituation, or the way we become used to things. Typically, people sort various inputs, keep or discard them and then store those they keep. Our brains thus become accustomed to the familiar. After the third viewing of a good movie, or a 10th viewing of a real favorite, you’ve had your fill. Many autistic people, though, can watch that favorite a hundred times and seemingly feel the same sensations as the first time. While they are soothed by the repetition, they may also be looking for new details and patterns in each viewing, so-called hypersystemizing, a theory that asserts that the repetitive urge underlies special abilities for some of those on the spectrum."

But I worry about what I may hear from him one day.  Ron learned that his son, Owen, felt left behind when he identified himself as a sidekick to the hero in a Disney movie.  Or when he finally revealed how lonely his world could be by talking to his dad impersonating another sidekick, Iago, from Aladdin, "I'm not happy.  I don't have friends.  I can't understand what people say."  Are these emotions I am ready to hear from Keegan?  No, I don't think I am.  They are things I have feared and grieved, especially this year as all the neighborhood kids have gone on to kindergarten without him.  In his Disney-filled world, he is happy.  He is safe and full of emotion.  But when the movie is over, I'm afraid of him feeling lost.  He has endured so much more than any other six-year old should have to endure.  He has come out fighting each and every time.  I have guarded his physical heart and his health with every breath of my body.  I'm not sure how well I can guard him from the emotional pains of reality if we continue to break into his world or bring him out into our own.

Each month, we are seeing progress from Keegan though, and his scripts continue to be a large part of that success.  Perhaps he does watch too much television and movies.  But I wouldn't trade it or him for the world.