Saturday, July 30, 2011


As Skye and I open the door to Acme Superstore in Longwood, I hear two distinct male voices call out, “Skylar!” and I see my son smile.

Do you remember the theme song to the old sitcom “Cheers”?
         You wanna go where people know, that people are all the same
          You wanna go where everybody knows your name.”

 One of the reasons that the sitcom was so successful is because the show portrayed a desire that we all share. But such a place is difficult for a person who is very different, like Skye, to find.

Immediately after we moved to Florida in 2003, Jim and I set out to create a semblance of belonging and routine for our family. Pearce needed social situations and physical outlets, Skye needed routines that included visual and social stimulation. One afternoon, Jim and Skye were cruising the streets when they discovered “Acme Superstore”. Skye loved the immense collection of science fiction characters throughout the store. He soon began asking me to take him to the store. I had never been there and I could not understand what was so spectacular; he was not a collector of comics or collectibles. But the minute we walked through the door, I understood.

“Skylar!, how are you doing today?” I introduced myself to the two men who had greeted him, Marc Hammond and Todd Fisher. Todd had tattoos and short cropped orange hair, Marc, had his head shaved and tattoos that seemed to glow. Although it is often difficult for Skye to succinctly express a thought or desire, they listened and focused on him, and he responded in kind. Obtuse, detailed, minutia concerning comic books, science fiction, and super heroes is their niche, and they are phenomenal at it. Skye would ask Todd if he knew the name of a character that was on a specific planet during an early episode of the original Star Trek and Todd would know the answer before the question was completed. Instead of moving on to another person, Todd would stand and answer repeated questions and explain minor details to Skylar. I was also surprised at the specific knowledge that Skye had retained from watching these shows. The kindness shown to Skye touched me.

It has been seven years, and we visit our friends at Acme at least once a week. There have been many times over the years that Skye has been irritated and rude while at the store. There have been hours of conversations, hundreds of times when they have unlocked cases for him to see an object just to have him decide he does not want it. But still, Todd, Marc, Penny, Tori, Terry, and Mason continue to display kindness and compassion. It is “his” place. He feels safe.

When Skye was a small child, I imagined the life he had before him. I believed that he would be befriended by Christians in a church setting and that the majority of his social contact would stem from these relationships. As he grew older, I realized that his voluntary social contacts would be people who care primarily about the rest of our family and view Skye as a secondary obligation. There are exceptions, but that is the general rule. It is very unusual for someone to reach out to Skye before they know us, Kim was an exception and so is “Acme Superstore”.

I truly believe that God has set all things in motion and that His plans far exceed my comprehension. But-----I love it when He surprises me with random displays of kindness and compassion that I neither sought out nor expected. We enjoy our friendships with the people at Acme, friendships that were birthed from kindnesses shown to our son.

So here’s to you, Acme, I raise my glass and my heart, because you are a place where “everybody knows his name”.

Saturday, February 5, 2011

Along Came Kim

Along came Kim

Each day as Skye approached the car after dismissal from school, I could tell by the look on his face whether it had been a pleasant or an unpleasant day. On this particular afternoon, his smile laid the foundation as he talked about his new friend, Kim. She was a volunteer in a high school organization called Best Buddies, Intl. It is a great concept for a service group, but in four years, we had never really seen it work well. High school students agree to “befriend” a special ed. student while in school. I believe that the vast majority of these students have a sincere intent to fulfill their pledge, but as the year progresses and schedules fill, it is the relationship with the special student that usually falls by the wayside. I smiled, listened, and quietly knew that in the weeks to come, he would be asking me why she never visited him. Day after day, we began hearing about this girl who was eating lunch with him at school. One afternoon Pearce came home and asked why Skye now eats lunch everyday with a group of cute girls.  After a few weeks, I popped into Skye’s classroom and asked his teacher to give me the scoop, and her words of praise and endorsement actually surprised me. Kim asked Skye to come to an intramural dodgeball tournament that Pearce was playing in at the high school and sit with her. She was cute, vivacious, full of energy, and seemed to be genuinely concerned about Skye. She had a number of friends with her; all of them seemed to be bright and energetic. I decided to ask Kim to join us at home for dinner. That was four years ago.

On our living room couch on that first visit to our home, we were touched by her interaction with Skylar. She would look into his eyes when speaking to him, and if he “checked out” during the conversation, she would pointedly ask him a question. It was during our conversation that we learned that she did not believe in God.  Week after week Kim continued to come to our home for dinner. She always came with a friend who would either stay for dinner or drop her off and then return to pick her up. We learned that she did not have a driver’s license. While this was unusual for a high school senior, it did not prompt us to ask her why.  During one subsequent visit, we asked her about her life goals, and her surprising answer was, "I want to be a missionary." This response, coupled with a non-belief in God, seemed incongruent to us. Jim asked how she reconciled her belief with her vocational desire, and she responded, “I want to give people hope, even if it is not true.”

It would be months before we learned the true story of Kim’s life. Her father, who had never lived in her home, had been the victim of a violent act when she was 12 years old and had been living in a nursing home since that time.  Her mother, a native of another country, had returned to her home country for health reasons and Kim and her older brother were left alone in the U.S. Kevin, four years older than Kim, supported them by working in a restaurant. They shared one rented bedroom in a home.  Almost everything she had was given to her by friends.  A caring high school teacher had sponsored Kim so that she could participate on the debate team. She had no driver’s license because there was no car to drive, and no one to teach her. Kim had decided there was no God, partially because she had never experienced safety and security in her life.  How could a loving God overlook one of His children?  Kim began joining our family for all holiday celebrations.  The customs that we had carried out for years were suddenly more meaningful as she experienced many of them for the very first time.  Before long, Kim shared that she had become a believer in Christ.  She explained,

 “I saw Jesus through Skylar, through his unconditional love for me, no strings attached, no second guessing.  I could not understand how others would ask “how could you love him?” when all that I could wonder was, “why does he love me?”

Skylar did not ask anything of Kim except her time. He did not care how she was dressed, what her grades were, or if she could drive him anywhere. He simply loved her for being Kim, and that was one of the first times that anyone had loved her without wanting something in return.

Weeks later, Kim told us that she had ended an unhealthy long term relationship. On the other side of the kitchen door, Skylar was able to hear the details. Suddenly, we heard, “Josh, you never call Kim again. You leave her alone!.” Skye had picked up Kim’s cell phone and hit the recall button. It was abundantly clear that he had taken up the role of her protector.

Shortly after he wakes each morning, Skye finds Kim and lays his head on her shoulder for a few seconds. She is the only person in our home who Skye allows to touch him. He calls her his sister and they share a unique bond. When she is sad, he is sad, they argue and tease and laugh. She has the ability to push him to try new things, she is truly a gift.

Today, Kim lives in our home and is dating a stable, secure young Christian man who desires to become her husband.  She is working and plans to return to college in the fall. On those rare occasions when Jim and I are able to enjoy a dinner or a weekend alone, it is usually Kim who rearranges her schedule to stay with him. It doesn’t really matter to Skye what they spend their time doing, as long as he is doing it with Kim. Kim was a daughter with no home; we were a home with no daughter. Skylar is the magnet who brought us together.

Thursday, December 23, 2010

I think God made a mistake

When Pearce was eight years old, he experienced a taste of what his life would be like if Skye was not a special needs brother. In 1998, we decided to try a special school for Skylar that was located in Jackson, Mississippi. We had no idea if the unique way that they teach would be able to break through to Skylar, so rather than move our family, we chose the rigorous path of traveling each weekend. Jim “moved” to Jackson with Skye and picked up some adjunct teaching classes at two community colleges and RTS, and Pearce and I stayed in Dayton, TN.  It was a difficult year on many fronts--relationally, financially, and educationally. The saddest part of the experiment was realizing just how peaceful that life without Skylar could be. That is a very difficult admission for a mother to make, but it is true. I missed him terribly, but within minutes of our reunion weekends, he was angry about something. I hoped that Pearce would not notice, but he did.

One Sunday evening, after Jim and Skye had left our home in Dayton, Pearce was going to bed. We prayed our nightly prayers and I sang to him, as was our tradition. As I was getting up from his bed, Pearce quietly said, “I think God made a mistake.” “What?” I responded. “I think God made a mistake putting me and Skye together in a family.” Whoa, I sat back down on the side of his bed, leaned over his face and told him, “I want to tell you a true story. Years ago, we were contacted by the adoption agency and told that we had just been blessed with a baby boy. I was really happy, because I had always wanted sons. Then, I noticed the hesitation in our caseworker’s voice. She proceeded to tell me that the baby might very well be mentally retarded. He was quiet premature, and his PKU levels were terrible. I felt sick. I had a brother with special needs, and I did not think that I could deal with a child that would require so much of me. After hanging up the phone, I called a dear friend who was a physician and told her what the agency had said. Her advice was “do not touch that child”. I was eventually able to speak to Jim and told him the news. I was very clear that I did not want to take that child. Jim’s response was that he would pray about it. That evening at home, I was extremely worried. When Jim arrived he explained to me that he had really prayed about it and that he knew that this child was the son that God had specifically chosen for us. My response was, “I will not bond with this child.” I knew that the Lord had placed me with Jim and that he was the spiritual head of our home. At that point in my spiritual life, Jim had a much closer walk with the Lord than I did, so I decided that I had to trust him, and accept our son.”

“And that boy was Skylar.” Pearce said timidly. “No, Pearce, that child was you. I knew that Skye was special, and that is why I was afraid to add you to our family, but I trusted your dad’s faith.” I started crying as I was saying the words and my tears fell on Pearce’s cheek. “I am sorry”, I said as I tried to wipe my tears away. “It’s okay mom, they are my tears too” he responded. 

Seven weeks after we brought this tiny 3 lb.12 oz, 14 inch child home, he spiked a fever of 105.6 degrees that the emergency room was unable to control. The doctors were baffled, and Pearce was hospitalized with an ominous warning about the outcome. Jim and I took 12 hour shifts between the two boys. During that time, I either held, comforted or prayed over Pearce for hours at a time. We bonded in a way that only God could arrange. At the end of the week, his fever disappeared, and the physicians were never able to give us a diagnosis. I have often wondered if God used that period of time to heal Pearce of possible brain damage, and to heal my heart of the fear of loving him.

“Pearce, if I had not trusted your dad’s walk with the Lord, I would have missed you! I would have missed the great joy that you have brought into my life. Sometimes in life you just have to follow the path that you know God is directing you on even when you do not understand.”

I am so very thankful that I did not miss the blessing of Pearce, or of Skye.

Sunday, December 5, 2010

When Boy Meets Wall

We have been blessed during our lifetime to know some very wonderful people. It is always interesting when Skye meets someone because regardless of our preparation, we never really know how he will behave at the appointed moment.

About five years ago, we became friends with a delightful young man, Derrick Chambers. If you know Derrick, you know that he looks like a walking wall. He played on the National Championship team for the Univ. of Florida and then professionally for the Jacksonville Jaguars. Derrick decided to leave all of that to come to seminary in Orlando. He and Jim became friends, and on this particular evening, Derrick was coming over to join us for dinner.

Skylar was sitting in the floor in the family room building a rocket ship with K-Nex, when Derrick entered the room. He slowly looked up at Derrick, and as his eyes continued upward, his mouth slowly opened. (I have learned that this is a good time to jump in front of Skylar and divert his attention.) “Hey, Hey, Hey, it’s Fat Albert!” he yelled at the top of his voice. I stopped in my tracks, too stunned to say anything. Jim, the quick thinker in the family, worried that Derrick might think that we had never had a black person in our home, and rather than draw attention to the similarity of the color of Derrick’s skin and Fat Albert’s, Jim quickly said, “Skylar, it’s not nice to call a really big person fat, Derrick’s not fat at all, he’s all muscle.” Skylar replied, “I didn’t say it because he is fat, I said it because he is brown.” That was the beginning to our evening. Pearce said that he had never seen my face that particular shade of red.

Derrick still maintains a low carb meal plan, so I had prepared Chicken Marsala and several roasted vegetables. Skylar continued to stare at Derrick during the meal and asked him to leave the table with him. We assured Derrick that he did not need to follow Skylar, but his curiosity got the best of him. In a few moments, we heard Skylar’s voice resounding from the breakfast room, “OH MY GOSH! OH MY GOODNESS!” I jumped up to discover that Skye had retrieved the bathroom scales, brought them to the breakfast nook and was having Derrick stand on them!! When the scale circled back around the “0”, Skye was amazed. I was horribly embarrassed, and Derrick was laughing.

The sweet part of this story is that Derrick began coming over on Monday nights and taking Skye out. They would just walk through stores, and Skye was very happy. This continued until Derrick left for Oxford to study for the summer and then on to Princeton, where he earned a graduate degree. 

Skylar never fails to unveil an aspect of an unsuspecting person’s personality. Sometimes it is irritation, sometimes compassion, and other times it is wonder. I love it when I can experience the surprise of tenderness in someone’s heart, especially when that someone is a soft spoken 320 pound giant who just happens to be a friend.

Saturday, December 4, 2010

It's not really about the chip

Skylar started receiving communion about two years ago. We would have been pleased if he had accepted it after his baptism, but it is difficult for him to drink grape juice or wine. He cannot tolerate the smell or taste of sugar, and he drinks only milk and water. After discussing this conundrum with one of the pastors of the church, we decided that it would be permissible for Skye to simply receive the bread, or in the case of our church, the “styrofoam” wafer. We were all completely surprised to discover that he LOVES the taste of the wafer! In fact, he asked if he could have more. I doubt that has ever occurred in the history of styrofoam wafers, but then history is just discovering Skylar. We explained to him that he could have only one, and he eventually understood.

The next Sunday morning, Skye was psyched to receive communion again. As Father Carl, the head pastor of our church, came toward us, he stopped and returned to the communion table. He had a special wafer for Skye; it was approximately the size of a Krystal hamburger! It looked more like a coaster for my end table than a wafer for communion. Tears filled my eyes and Jim’s as we realized that our pastor had specifically sought out this wafer for our son. I quickly imagined Skylar gratefully and graciously raising his lowered head to receive the wafer. Suddenly, “CHOMP” Skye snapped the wafer out of Father Carl’s hand with his teeth like an alligator snatching its unsuspecting prey from the shore. Had he bitten Carl’s hand? Thankfully, he had not, and Carl smiled pleasantly and moved to the next parishioner as Skye loudly proclaimed, “Um, that was good!”

These are the moments when reverence for a significant occasion and the embarrassment caused by an unfettered son duel in my mind. What do people think of us? Do they think that we just keep him in a shed in the backyard and place his macaroni and cheese in a dog dish? After all, Jim works at a seminary; we have been involved in Christian service for our entire marriage. Shouldn’t he have known better? The answer is---yes and no. Skye should be able to observe social clues from others around him, but no, he does not. He does not infer appropriate social behavior from one circumstance to the next. Each incident stands alone in his mind, and we have never said, “When the pastor serves you communion do not snap at his hand or growl.” So, what do I do with this?

I believe that Skylar effects the lives of everyone that he touches, not just the people in our family. Father Carl’s heart was pricked by compassion, so he found a larger wafer. He is able to see the small child that thrives in Skye, so he can continue to worship as he smiles and moves on down the communion line. Church members who were aware and witnessed the encounter were either silently judgmental or moved to compassion. Their response was directed by the condition of their own hearts. Skye’s behavior often acts as a surgeon’s knife; it pierces the layers of flesh and bone and pinpoints the infection. The choice of an antidote rests with the observer.

Thursday, December 2, 2010

The Autistic Theologian

Skylar and I enjoyed 15 minutes of our six hour trip to Universal Studios today.

 I admit it, I get really tired of his inability to savor a moment and enjoy it. As soon as Skye purchases a sought after toy, he begins the process of wearing me down for the next prize. I long to hear a sigh of appreciation and the silence of discovery that accompanies the acquisition of a new, interesting object. So, I lost my temper, seriously lost it. I said a word that I have never said in the presence of my children, and have said very few times anywhere else.  My exact quote was, “Damn it Skylar, please be quite!.”
Utter and complete shock ensued. “I cannot believe that you said that word! You do not say that word!” I immediately apologized even while realizing that I had just set in motion a 24 hour cycle of explanation. You see, one thing about Skye is that he is congruent. He is black and white, there is no such thing as plaid or gray. If one is a bad person, they do bad things and vice-versa. Therefore, there is no ability in his world or mind for a good person to do a bad thing. I, his mother, am a “good” person. I love him, care for him, laugh with him and spend my days attempting to create a world for him. But, I said a bad word, I did a bad thing. His mind is spinning as we make our way to the car. “That is a word of the devil; you are taking the devil’s side.” “You betrayed me, you said that word, you betrayed me because I am mean to my brother.” The ride home was  silent, which I must say, I enjoyed immensely.

 We arrived home 5 hours ago.  Since that time, he has informed me that he has a stomach ache because I upset him so much by saying “that” word. He has wrapped a blanket around himself and said, “Mom, see what your word did, it has made me cold.”. I am certain that if his foot itches, or if he is constipated, that it will all lead back to my “word”. And then I wonder----could it possibly be that he is telling the truth? Could the inconsistency of who I say that I am and who I am in the worst of times actually affect this child to the point of illness? O course not, would be my first answer. He is simply doing what all children do and attempting to manipulate this situation for his own purposes. Isn’t that what children do? And yet, do most children say no to ice cream and sweet drinks because they detest the smell of sugar? Does the average 22 year old man lay in a tent for an hour in the mornings so that he can gently wake his stuffed dolphins and sharks? Or become so excited over a happy meal toy that his hands begin flapping like wings while he makes the sound of a coughing seal?  (He just walked into the room and said,” Mom, look what you did. I am sick. I have numbness and everything. What can I do? This is because you said that word. I might hurl.”)

I would love to believe that the only issue here is that Skye is over reacting---either legitimately by involuntary body responses, or illegitimately by over exaggeration. But, the reality is, it doesn’t matter. I apologized and will continue to treat him as usual. I will not give him a “treat” to temporarily take the heat off of me because that might reinforce his behavior, regardless of the legitimacy. But the more serious issue is the one concerning my heart.

“…For the mouth speaks what the heart is full of.” Luke 6:45. Of course I can justify my behavior, I had/have a mom who used the same adjectives as a longshoreman, I was tired, I was irritable, blah, blah. No excuse explains my lack of verbal control. If the anger, frustration, and disrespect that the expression “damn it” conveys had not been in my heart, the words would not have flown from my mouth. Again, my son is the teacher and I am the student. He is constantly peeling off the layers of personality and culture that I have wrapped myself in and exposing the cold, hard truth of my heart and who I am. My son, the autistic theologian.