Wednesday, April 10, 2013

Celebrating Peacekeeping

Something within Noah seeks peace. I think it is a response to the sensory environments he struggles against most of the day.  Or perhaps it is how he is more emotionally “tuned in” to his surroundings…but that is a post for another day. Regardless of motivation, Noah actively seeks peace.

Peace, for Noah, is not merely the absence of conflict. Rather it is a set of conditions where living is marked by harmony. Last week, part of Noah’s peace was shattered when some of the neighborhood kids etched graffiti on the picnic tables near the playground at our apartment complex.

Reporting it to me immediately, Noah could not imagine why anyone would destroy something “so beautiful.” Trying to calm him I said, “Noah, it is just picnic tables. They don’t have feelings.” Noah replied, “But they are there for families to be together on. Now families have to look at bad words and dirty pictures!” He was also distraught because this is adjacent to the playground and now the “little kids” might see those things and “be afraid.”

Peace is marked by places of togetherness where people can gather without fear.

This happened last week and Noah is still upset. Yesterday, I caught him lying on his belly on the porch with a piece of paper, a pencil and my camera. When I asked what he was doing he said, “Scoping out the situation at the playground. I am narrowing down the suspects to find the culprit.” He was using my camera for “surveillance” he said. At one point he said, “I think I’ll just go and try and talk with them about why they did it.” I probably saved his life by talking him out of it.

Now I wonder if I did the right thing. Noah wanted to advocate for peace. We have few enough people in the world who even recognize what it is, much less are willing to speak it into existence. Perhaps I should have allowed Noah to lead me into a conversation with those kids about the graffiti and how it has ruined a part of our world. Maybe we could have made a difference. Maybe not.

Today I am going to work with him to write a letter to the management office about the situation. I am hoping it will provide some closure for him. Then I think we will go to the city park and swing on the tire swing. That always makes him feel more centered.

Maybe it will bring him some peace.

Friday, April 5, 2013

Celebrating Hearing

Probably our most diabolical enemy is Noah’s acute sense of hearing. He recently told his pediatrician, “I can hear everything. I mean EVERYTHING. Can we do something about that?” He went on to explain that he hears all the noises in his classroom, in the classroom next door, and the one next door to that one. It can really make him miserable. Ear plugs help, but the real answer is to try and desensitize him to sound as much as possible.

But this, our greatest challenge, has also brought Noah an awareness of his disability. He knows that other people cannot hear things like he can. Therefore, he has more tolerance for loud people and loud noises because he realizes that he has an extra-ability they don’t have. Often he will say, “It is just me and my hearing. I can’t get frustrated at them.”

I believe this has served to make Noah more responsible for his actions, words and thoughts than some typically functioning children. He is slow to place blame on a situation as being inherently uncomfortable or impossible for him. Instead he takes the initiative for pushing through that barrier and compensating it. If we are headed out to a restaurant that has an open kitchen or is known for its noise, he will just casually slip a pair of earplugs in his pocket.

For years, he has used earplugs at church because the music is unbearably painful for him. Recently, however, Noah has been trying to reduce his usage of the earplugs on every occasion at church. He might say to me, “Today I only used my earplugs for 2 songs!” (Meaning that for 3 songs he forced himself to tolerate the sound.)

On Easter Sunday, Noah didn’t use his earplugs at all. When I asked why he said, “Well, because it is Jesus’ big day and I didn’t want to miss any of it!”

Understanding and embracing his own differentness has encouraged Noah to set goals that motivate him to push through his barriers. This is something everyone has to learn to do at some point in their life. In a bizarre way, if he didn’t have the extra hearing abilities, we wouldn’t have that benefit. In this way, our disability has served to help us push through barriers others don’t have to push through. I think we are stronger for it.

Thursday, April 4, 2013

Celebrating Vision

While writing my thesis I came across an interview with Simon Baron-Cohen, Professor of Developmental Psychopathology at the University of Cambridge and Fellow at Trinity College, Cambridge. He is also the Director of the Autism Research Centre (ARC) in Cambridge. This guy really knows his stuff.

He characterizes autism as, “a condition that leads to strength.”

In the documentary Loving Lamposts (available on dvd and on Netflix) he states

Autism is a condition where some of the most basic aspects [that we take for granted] about being human, like communicating with other, and empathy many not come naturally and yet other aspects of being human like being able to see patterns and do science may be developing faster than usual. So children with autism seem to be telling us something very important about how the human brain develops. And in understanding autism we might be understanding something about humanity.

In other words, we aren’t less human because of what we can’t do – we are extra human.

Practically speaking, Noah has a lot of abilities that seem, well extra. The first I’d like to turn my attention to is his visual sense. All visual processing issues aside, Noah can see things I can’t. For instance, his eyes register the blinking frequency of a dying fluorescent bulb several days before I can. He has always been able not only detect patterns visually, but masterfully train his gaze on a mass of objects picking out an individual piece I can’t detect. I always thought I was a wiz at the “Where’s-Waldo-style” search and find books, but Noah puts me to shame. Finding the needle in the haystack is no problem for him. He has a true eagle eye.

Noah misses very little. Ever aware of his surroundings, his extra vision can really be an asset. It is taking time to learn to harness this ability into a strength we can use to better the world, but I have no doubt that he will.

Wednesday, April 3, 2013

Celebrating Smallness

One of the ways autism has redirected our life has been through changing our focus on achievement. Admittedly, I stopped filling out his Baby Book early on because it was just too painful. Milestones missed, empty blanks on empty pages of developmental markers he was supposed to achieve but didn’t. (Not until much, much later at least.) With each passing year, it would become more obvious that Noah was “delayed.” Thus, our achievements weren’t those of his peers.

While his friends were running, he didn’t walk. When they were coloring pictures for their moms, Noah wouldn’t hold a crayon. Other children in his class babbled away and had to be quieted. Noah never made any noise. Our drastic differences made achievement driven model of success impossible.

So we became attuned to the smaller milestones – ones so small that some parents of typically functioning children don’t even notice. Things like: “Noah looked at me and smiled today” were cause for celebration. We learned to cherish and celebrate every victory – no matter how small.

Other victories included:
  • Noah held a cup today. (3 years old)
  • Noah pointed at milk in the refrigerator today. (around 4 years old)
  • Noah crawled up into my lap and let me hold him for 2 minutes! (5 years old)

We have never stopped celebrating our smallness. I can tell you about the first time Noah ordered in a restaurant, the first time he read scripture, and his first weekly allowance for chores completed. All very small things, made graciously full through a celebration that allows us to develop at our own pace. We’ve learned that “delayed” doesn’t mean you’ll never get to your destination – you just make more stops along the way postponing your arrival somewhat.

I believe we are more content and happy because we celebrate smallness. Interestingly enough, we also have more to celebrate than most people. And our smallness identifies us with Jesus, who liked to use mustard seeds as an illustration of strength and greatness.

Tuesday, April 2, 2013

Celebrating a New Worldview

To say that I was unacquainted with the vocabulary, issues and concerns surrounding of the disabled community is a vast understatement. When I was in college, I took a class called "Into to Special Education." When we got back to our room after class, I took the book and threw it across my bed where it took a bounce, hit the floor, and skidded under my roommate’s bed. A friend said, “You’re gonna need that to study.” I quipped, “This class is a waste. I’m not going to teach kids like that.”

You see, “kids like that” would require too much of me. In all honesty, anyone “like that” was anyone different from me. Because I was “normal”, right? And putting myself through the paces to understand anyone “other” than me was just too much.

Fast forward twenty years, and I’ve written a 100+ page thesis on “Persons with Disabilities as the Imago Dei” (most of it anyway). I write articles and curriculum adaptations for children with special needs. I speak at national conferences about welcoming the “other” into our churches and schools. I am a full-time advocate for disabled children and adults.

How did this happen?

Noah gave this to me. Autism gave this to me. Without our struggles, I would never have come to a place where I could confront my own weaknesses through welcoming someone “other” than me. My entire worldview is different than it once was. And I am a better human being for it.

Autism has made me a better human being.

Monday, April 1, 2013

Celebrating Autism 30 Ways

April has been designated “Autism Awareness Month”. Throughout the month I’m sure there will be all manner of activities, Facebook posts, tweets, and blog entries about Autism. But I wonder what message the wider world is really getting.

Recently a waitress tried, without success, to interact with Noah. She shrugged her shoulders and said, “He is shy I guess.” I smiled and told her that Noah has Autism and doesn’t really do small talk. Her response was, “Oh, no! I’m so sorry.” By the gaze she was giving Noah during her apology, I inferred that she wasn’t sorry she had misunderstood him, but rather that she was sorry for his Autism.

As difficult as this “disease” is at times, I’m really not sorry for it. Sure, maybe it is just my version of normal and I don’t know any different and, therefore, I’m not sorry. Or maybe, just maybe, autism has given us more than it has ever taken away.

Before you accuse me of looking on the “bright side” of things, don’t. I’m really not a very “positive” or “up beat” person. Actually, I typically prepare for the worst possible scenario. It makes me feel better. I feel more prepared if I imagine the worst outcome and what my response will be. So when I say that I am honestly not sorry for our “condition,” I really mean it.

I suppose I feel strongly that I must somehow contribute this idea to the on-going discussions about living with disabilities. So for the month of April, I’m going to “light it up blue” with a 30 days of celebration. Each day I’m going to write one of the things Autism has given us and made us more human.

Our life isn’t easy…but neither is the life of the neuro-typical individual, or the genius.

Thursday, March 21, 2013

Bless the Lord, O My Soul

Recently, we have had more challenges than usual. I think that is just the way of this thing called Autism. Just when you believe you have developed all the coping mechanisms you might need to make it through, new obstacles arise leaving you without strategy. The onset of atypical migraines has been one of our newest hurdles. Presenting with stoke-like symptoms, these headaches required several hospital stays that left Noah critically behind on his schoolwork. This is one more way we suffer. It is one more cross to bear.

Already hindered by the learning disabilities that accompany autism and dyslexia, this new cross seems too heavy. Further and further behind in school, we worry that Noah will never be able to catch up. Realizing that his intelligence may never be recognized or valued is another cross we bear.

His teaching team at school is witness to Noah’s frustration and tension. In response to our new challenges, as well as the difficulties Noah already experiences with reading, his school offers extra reading tutorial several days a week. Somewhat encouraged by this gesture, I still know it takes an inhuman amount of effort for Noah to keep his head above water – effort we sometimes don’t have to spend. Always feeling behind and different is another cross we carry.

But Noah is doing what he always does. He just keeps on going. When asked to define “success” as part of a school project last year, Noah said, “Success is when you keep moving forward.” This Sunday, I saw just how far small steps forward actually take you.

Wanting to be useful at church, Noah has added several tasks to his Sunday church routine. He has been helping set up tables and chairs before the service since he was old enough to pick up a chair. It comes with being a minister’s kid I guess. I suppose he has grown up seeing church as a place where work needs to be done. Even at a small church, there are sets of tasks that need completing each week. Noah has tuned into these tasks.

For instance, our church shares a parking lot with a city park. Parking is often at a premium on Sunday mornings during baseball season due to tournaments. Noah reserves spots close to our building with folding chairs and serves as a “parking lot usher” on these days. He participates in taking up offering and distributing communion. These are things Noah has challenged himself to do so that he can participate in our church. And they are difficult for him because they require high levels of adaptive functioning. But nothing as difficult as the challenges he faces in the learning environment, which is why I was surprised when he expressed an interest in reading scripture during our worship service.

Noah avoids interactions with people primarily because of his speech. Slurred and difficult to understand at times, Noah’s speech hampers his communication. Additionally, the social pieces of communication (like eye contact) are often lost on Noah due to his autism. As a result, spoken words are rarely Noah first choice in the communicative process. People often think he has nothing to say, and therefore, no thoughts on many issues. This is another cross he carries.

Just as difficult is the reading process in general. He recently described the process of viewing a printed page as “seeing through a rainbow cloud.” Letters within words are not stationary and often vibrate or float as Noah’s brain tries to capture their meaning. Reading is, quite honestly, nearly impossible for Noah. If the world belongs to the readers, writers and speakers then the world is not Noah’s. Not having the ability to contribute in a way that is meaningful to the world around him is a heavy cross for him.

You can understand my awe and wonder when Noah expressed a desire to 1). Read scripture, 2). aloud in front of people, as a part of our worship service. But he asked for the opportunity, so I worked with him on a verse he could read to begin our service to introduce a new song we were singing. Noah practiced his verse to be ready to participate.

To engage our church in this new song, I asked them to think about the cross and how it offers us redemption. I said that living “cross-shaped lives” often means enduring pain in the hopes of seeing it redeemed one day. Everyone was provided a post-it note and asked to write a struggle that have either seen God redeem or are trusting God to redeem in their life.

I think I glimpsed heaven as Noah rose to his feet and took his place. Placing a printed copy of his passage on the podium, Noah read these words from Psalm 103:
      I will praise the Lord.
Deep down inside me, I will praise him.
I will praise him, because his name is holy.
      I will praise the Lord.
I won’t forget anything he does for me.
      He forgives all my sins.
He heals all my sicknesses.
      He saves my life from going down into the grave.
His faithful and tender love makes me feel like a king.
      He satisfies me with the good things I long for.
Then I feel young and strong again, just like an eagle.
      The Lord does what is right and fair
for all who are beaten down.

As he read, he modulated his voice and used expression to convey certain words like “sicknesses” and “king.” He gestured with his hands during phrases like “I won’t forget anything he does for me.” His small voice, complete with speech defects where letters like “r” make the “w” sound, flowed like beautiful music in our worship space. In that moment, Noah’s cross became a little lighter because by allowing him to bear his cross in our community of believers everyone bore it with him.

After Noah read his passage, he went to his seat and filled out two post-it notes. One of them said, “math”. This is a reference to how he feels more competent at this subject but still cannot achieve in the classroom due to the noise. The other read, “speech.” Noah has plenty of words to say, but difficulties in speech and language often render him mute. Placing those on the cross, he gave them to God to redeem.

Truthfully, Noah carries his cross more gracefully that I do. He has moments of such severe frustration he has developed migraine headaches, but generally he does not complain. I think this is because Noah does not view success as completion or achievement, but as picking up his cross and taking one more step forward.

On Good Friday, our church will carry a cross though the streets of downtown Cumming, Georgia as a commitment to bear the cross for our community. We do this through living cross-shaped lives that empty ourselves out and take on the nature of servants (Phil 2:5-11). Noah will lift that wooden cross and drag it a few paces through the center of town on that day. But for me, nothing is as beautiful as the way he simply moves forward despite his suffering every day of his life.