Conservatorship

Today, a court decided that it would be in Pierce’s best interest to grant Tim and I conservatorship. This means that from this day forward, we are responsible for making any and all decisions regarding his welfare. It doesn’t really change our current way of life. Pierce has been dependent on us for nearly 21 years. But somehow, hearing a judge say that we were terminating his rights made his future feel determined and permanent. This is a process that we should’ve started three years ago when Pierce turned 18, but we were either daunted by the task or in denial that it actually needed to be done. We haven’t been challenged by many people when we’ve spoken for Pierce, but it has happened, and I can see this will be an issue as he continues to age. This is one more step in the journey to set up care for an adult son with autism. We still need to get the ball rolling on social security benefits, create a special needs trust, and figure out health insurance options. I opened a bank account for Pierce today. I had to show the court documents as proof that I can legally make financial decisions for my adult son. He will have a bank card with his name on it, but the account belongs to me and Tim. The home renovations that we’re planning to start soon will be in two phases. In phase two, we will give Pierce a more private place to live downstairs, in case living in a group home down the road doesn't work out. It will be similar to a mother-in-law suite.

This time last year, I was so mired in the bog of depression, I had no mental energy to be proactive in planning for Pierce’s future or keep track of graduation/college requirements for Reagan’s upcoming senior year. In counseling, I told Tim and my therapist that after 20 years of being the parent that stayed on top of things, knowing everyone’s schedules, what papers needed to be signed, how much money each child owed for clubs, youth activities, etc., I was tapping out. I’d gotten the kids through childhood, now I needed someone else to take over. Tim didn’t hesitate, question, or complain. He just said, “absolutely, yes, I will take the lead.” He took Pierce to get a picture ID (since Pierce doesn’t drive, he still didn’t have a legal form of identification at the age of 20). He researched college application deadlines for financial aid and housing for Reagan. He kept track of her schoolwork and grades and attended parent meetings. He got in touch with a lawyer and completed all of the paperwork that was necessary for us to seek conservatorship. I feel guilty for forcing Tim to take on such a burden, but I’m so grateful he’s been strong enough to carry it. 

It is sobering to have an official declaration that Pierce is not capable of making health or financial decisions for himself, but it’s also reassuring to know that his future is less uncertain than it was a year ago. This takes away a little of that panicky feeling I get when I think about what lies ahead for Pierce, me and Tim, and Reagan. I think we are slowly but surely headed in the right direction.

I LOOOOOOOVE CAMP!!!!

A couple weeks ago, I shared the story of how Pierce was involved in the theme and artwork for Otter Creek Christian Camp this year. I said in that post that I had another aspect about camp that I wanted to write, and that deals with Pierce's journey at OCCC.

In 2010, we had been a part of Otter Creek for little more than a year. That summer, Reagan would be a rising 4th grader and Pierce a rising 6th grader. We expected for Reagan to go to camp, and wondered if Pierce would be able to handle it. We were encouraged to sign Pierce up. Camp director Jamon Martin met with us a couple of months beforehand. If you know Jamon, then you'll recognize the title of this blog post as his "catchphrase". He told us that Pierce would be their first autistic camper, and he was EXCITED about the challenge. He wanted camp to be a place for ALL children. He didn't sugarcoat anything; he was scared, but not so scared that he wasn't willing to give this a shot. He knew we were nervous about sending our child, who was prone to wander, out to a large wooded camp in the middle of nowhere, but Jamon assured us that someone would be with Pierce 24/7. We told him that we felt relieved that his little sister (who very much acts like his big sister) would be there with Pierce, but we didn't want her to miss out on any fun because she was constantly looking out for him. He said he'd try to make sure this wasn't an issue. 

The day came to drop our kids off at camp. I was a nervous wreck. This wouldn't be Pierce's first sleep away camp, but his other experience was Camp Discovery, a camp specifically for special needs kids. Most of my fears subsided, though, when we pulled up to Pierce's cabin. One of the 6th grade boys, coincidentally Jamon's son Gunner, yelled out, "Pierce is here!!". He and a couple other boys came running over to greet him. I can't explain the peace I felt, but I just knew that Pierce was in a place where he would be loved on and watched over. I heard nothing but great things at the end of the week. Reagan was able to enjoy herself, although she did admit that there were times she worried a bit about how her brother was doing. At Camp Night a few weeks later, I saw a slide show filled with happy pictures of Pierce. To my knowledge, there weren't any meltdowns or incidents of him trying to run from upsetting situations. It seemed to be a place where he was happy and carefree, and the campers loved having him there. He loved it! Every year, anticipation for camp was almost greater than that of Christmas. 

Pierce and Reagan OCCC 2010

Pierce and Jamon

He LOVED the giant slip 'n slide

Pierce's cabin mates (a few 6th grade boys)

This year, I was blessed to experience camp first-hand. Pierce was totally in his element, as comfortable as being at home. This was his last year at camp. The rising seniors dress up in a different theme before dinner every night. After a mix-up the first night where Pierce didn't make it out in the clothes I'd labeled for him, those senior guys made sure that Pierce was ready for all the theme nights to follow. They watched out for him, almost more than the counsellors and staff, and made every effort to include him in all the senior rituals. One night, they dressed in 50s attire, which I thought was an odd choice. Then during dinner, We Go Together from Grease came blaring over the speakers. The seniors jumped up and did a choreographed dance number...and Pierce was right up there with them! The seniors had met a few times before camp, but didn't know how to get Pierce there without tipping us off. They met and rehearsed the first night of camp, and Pierce learned the whole dance with them that night. Turns out Pierce likes to dance. On Monday night, we had a dance party. He was right in the middle of it, jumping all around. At one point, he grabbed an inflatable flamingo that was on the stage as part of an earlier skit. He had it by the neck, shaking it and dancing. I got coaxed out onto the dance floor when the Spice Girls came on, and he came wandering over. I took his hand, and, floppy deflating flamingo in his other hand, we danced together for a minute or two. Then he and his flamingo danced away. Such a sweet moment that I'll never forget. Years ago, the loud music would've sent him over the edge. But in recent years, he's learned to appreciate the loud youth group environment. Game nights were always some version of "capture the flag". Pierce mostly wandered the field during these games, but occasionally his teammates would remind him whose flags he was supposed to pull. He'd target someone and chase them relentlessly, until the kid being chased finally gave up and let him pull their flag. EVERY. TIME. Trust me, these kids wanted to win, but they had a soft spot in their heart for Pierce and didn't mind losing their flag to him. Some of them even cheered with him when he managed to "catch" one of them! He loved all of the silly camp songs, but also loved the worship music and would sing along just as loudly as the other kids. It was such a joy to watch him praise God with all of his friends.

Seniors with Jamon Martin

Pierce pulled a flag!

He's proud of himself

Senior guys on 50s night

Staff that had been going to camp since Pierce's first year told us how much they loved having him there. Some even said that they felt it was just as beneficial to the other campers as it was for Pierce. One day, I was sitting with Jamon as we waited out a giant storm. He echoed the sentiment that having Pierce there was great for the entire camp. I told him how grateful I was for Pierce to be there. He admitted to me then that he'd been terrified that first year, but so glad he took the challenge. He said that these kids will carry their experiences with Pierce into other aspects of their lives. It will forever change the way they interact with people who are different than they are. He thanked ME for trusting HIM and for sharing Pierce with camp. On the last morning of small group time (a mixture of campers and staff), we decided to go around the circle and tell our camp highlights. When it got to me, I couldn't hold back the tears. I told this group of kids that the whole week had been a highlight. That they couldn't possibly know how much it meant to me to watch how loving and accepting they were of Pierce. That I was so grateful for all of them. When I finished, one of the senior boys in our group quietly said, "Pierce is special to us, too". 

I was teary all week long. My heart was about to burst witnessing the joy Pierce was experiencing, watching my children together in a place that's so dear to both of them. And along with that emotion, I felt profound emptiness that his camp journey was over. Every "last" of camp was bittersweet. Sure, he'll still be able to go to Camp Discovery (they take campers from 8-years-old to 80), but it won't be the same when he's surrounded by kids like him, most of whom can barely communicate with him. Being with his "normal" peers stretches him in ways I'd never imagine. And knowing that he won't have this kind of camp experience again makes me ache. It has been suggested that maybe there's a staff position he could fill so that he could be at camp another year or two, but there would be lots of logistics to work out before that could be a possibility. Reagan has 2 more years of camp left, and I'd love for all of us to be at camp together again before she graduates. So, I'm not ruling anything out.

OCCC has been a gift to our family, one I wouldn't trade for all the money in the world. Oh that every church had a Jamon Martin, a man so passionate about camp being a place for EVERY kid. He never once suggested that either Tim or I would need to accompany Pierce for him to be able to attend camp. And we had faith in Jamon and other OCCC staff that they would not simple "babysit" Pierce for a week, but that they'd include him in camp activities and make him feel like any other camper there. Thank you, God, for people that dedicate their lives to being the hands and feet of Jesus to "the least of these". Thank you for Otter Creek Christian Camp. Thank you for these campers that gave Pierce the same respect they'd give any "normal" camper. Thank you for the opportunity to watch Pierce be a part of a church family. In the words of every OCCC camper every morning, I LOOOOOOOVE CAMP!!!

The Story

This past week, my husband and I were blessed to join our kids at church camp as staff members. Those of you that REALLY know me may have been surprised to hear that I VOLUNTEERED to do this. With the exception of my love of gardening, I am an indoor girl. I don't "rough it". I love my roomy shower and a big hot water tank. I adore my pillow-top mattress and sheets with the ridiculously high thread count. Air conditioning; sweet, glorious AC. Oh, and have I mentioned that I am a ginormous introvert? Being hot and sweaty all week, constantly surrounded by people, sleeping on a rock-hard bunk bed, and getting 3-4 minute-long lukewarm (but mostly cold) showers has NEVER appealed to me. Our kids, on the other hand, LOVE camp. People involved with camp over the years have told us how wonderful it is to have Pierce there, to watch him get so much out of it, and how sweet the other campers are with him. Last year, Reagan told us how she wished we could experience camp. She felt she just couldn't do it justice by simply telling us all of the things she loved about it, and how cool it was to see Pierce in a place he loved so much. This summer, Pierce would be a rising senior, and it would be his last year at camp. Tim and I made the decision that we would all attend camp as a family.

Our camp theme for the week was "The Story". We studied Jonah, Saul's conversion, and Peter and Cornelius. We focused on how we write our stories; how we have choices for our path; that no matter what choices we make or what happens in our story, God is working through it all. All week, some amazing people shared their stories. Well, I have an incredible story to share, but there are 2 different facets to it. The first is Pierce's involvement in this year's camp theme, and the second is how Pierce was welcomed into this camp experience years ago and watching him as a senior this year. Here's part one of my story.

This past school year, Pierce took an art class. This is a kid that HATED to draw or color when he was little. But in recent years, he's tried drawing some of his favorite VeggieTales characters. So I knew he had at least some artistic talent. Debbie Bagley was assigned as his Ed. Assistant for that class. It just so happens that Debbie attends Otter Creek Church of Christ with us. She emailed a few of his pictures to me, and I was pleasantly surprised at what I saw. Unbeknownst to us, in February, she told David Rubio, one of our ministers that works with our youth group, about Pierce's artistic talent and suggested that maybe one of his drawings could be used on an OCYG (Otter Creek Youth Group) tshirt. David thought that was a great idea and tried to figure out the best opportunity to use it. With about a month of school left, David came to watch Pierce compete in the Special Olympics. That day, he told Tim and I that he was planning to use Pierce's artwork for the camp tshirt this year, but told us this was top secret information. Honestly, I envisioned some simple little design that would look cute on a tshirt. Though Pierce had had a few art pieces displayed in the school art show and gotten the award for Most Improved Artist in his life skills program, I still couldn't imagine the depth of his talent. A month later, we were at the camp staff meeting. We were told that the theme had to do with the idea of story and how life was like a "choose your own adventure" book. Camp director Jamon Martin told us that the banner/tshirt art would be something amazing and very special. At this point, Tim and I had seen nothing. We were going to be just as surprised as everyone else at the final product. 

On June 26th, all four of us made the trek to camp. Tim and I were given pretty basic, white staff tshirts. We were told that name tags and schedules would be forthcoming, but we couldn't have them yet. Being new to this camp thing, I thought this meant we'd have to play some kind of mixer game to get our stuff, but the staff veterans seemed to be in the dark as well. The campers all arrived, and it was time for camp kickoff. This is where the banner containing the camp theme and artwork would be revealed. This is always a secret for the kids, but this was the first time that details had been on such a lockdown for most of the staff. Only a few people knew about Pierce's involvement, and 2 of those were me and Tim. All of the campers' parents are supposed to be gone by this time (except staff, of course). Debbie Bagley had come up to drop her daughter off, but she stuck around for the reveal because she, too, had a hint about what was coming. We sat with the staff at the back of the room, while our kids sat with their friends. After a couple of silly camp songs, David called Jamon and high school youth minister Nicole Hendley to the stage. In their hands, they held the rolled-up banner. David told the campers that this year's artwork was very special, because he had commissioned an award winning artist to draw it. He told the kids that even if they weren't familiar with the Nashville "art scene", they would recognize the name. He continued talking to draw out the suspense as long as he could, and the longer he talked, the more teary I became. Finally he asked for a drum roll, and Jamon and Nicole dropped the banner to much applause. It was a huge treasure map! Even from the back of the room, I could see it was very detailed and must've taken him weeks to complete. I was stunned! As the applause died down, David told the kids that the artist was in the room with them. He asked whomever drew the picture on the banner to please come to the stage. There was lots of chatter, but no one moved. He began to spell out "P-I-E-R...", and Pierce finally realized what was going on. Debbie hadn't told him the drawings were going on a shirt, because she didn't know for certain what David was going to do with them. He recognized the artwork on the banner as the pictures he'd drawn months ago. When Pierce got up and walked to the stage, the room leapt to their feet. Campers and staff were crying. Tim, Reagan, and I were an absolute wreck. He stood and looked at the banner for a second, then turned to look at the room full of people...all cheering for HIM. He was beaming with pride. Once the room finally calmed down, David asked him what he thought about the picture. Pierce said, "It's about The Story". He started to go sit down, but David put an arm around him and gave a summary of what the kids would be learning about this week. He then acknowledged that Pierce's whole family would be at camp for the week, and he called the rest of us up. As soon as she saw me, Reagan asked if I'd known about this. I nodded, and she said, "You knew and didn't tell me?!" I said that I'd wanted her to be surprised along with all of the other campers. Pictures were made of all 4 of us with our puffy eyes and tear-streaked faces, standing in front of the banner. Of course, Pierce didn't understand why the rest of us were so emotional. He was just grinning from ear to ear.

Later that day, I got my tshirt, name tag, and schedule, and finally got to focus a little better on all of the detail. The treasure map was on the back of the tshirt, and the full map was on the cover of the schedule book. Parts of the map were scattered throughout the book and on the back cover. There was also an island from the drawing on everyone's name tag. I was in awe. PIERCE did THIS?!

At dinner that night, I was flooded with questions. I told people that beyond knowing Pierce was involved, I was as clueless about the details as they were. Pierce's art teacher, Emily Martinez, also attends Otter Creek, and she was there for the reveal as well. We got to chat for just a bit, and she told me that Debbie worked with Pierce for about 30 minutes a day, everyday, on these drawings, and that Debbie was the one that made the suggestion to David that Pierce's artwork could be used for something great. Pierce was told that they wanted a treasure map, and he was shown lots of pictures that would work. He chose from those what he wanted to draw, and they were able to use a few pictures he'd already drawn earlier in the school year. Emily was the one that compiled them all together for the finished product. I didn't get to talk to Debbie before she left, but once I got home, I emailed her. She shared a few more details. She began the school year modifying his art assignments but quickly saw potential in Pierce. When he finished an assignment early one day, she gave him a step-by-step drawing book and was amazed at the finished product. She began challenging him with harder pictures, and he did a fabulous job with them. Earlier this year, the students were taught how to draw using a grid technique. By putting a picture on a grid, Pierce could copy the picture nearly perfectly onto his own blank grid. This was the method he used to draw all of the pictures for the banner. Debbie says, "Pierce worked so so hard. I would say, can you draw another picture, he would always respond 'yes!'" ...he really surprised me too with his artwork. This project forced us to push his limits. Trying to find things he could draw, that high schoolers would want to wear, forced him to have to try harder things. I wasn't sure he could do the dragon, and when he easily did, I wasn't sure about the alligator or even the treasure chest. But he worked so hard and did so well!"

It was a super emotional week, seeing Pierce's drawings all over camp, hearing how moved and impressed people have been. For the first couple of nights, the banner was used as an actual treasure map for the nightly skits in worship. The last couple of nights, it hung over the stage while kids raised their hands in praise and worship. Some have said this is the most special theme reveal and artwork the camp has ever seen. There were 13 baptisms at camp, and some of these kids want Pierce's artwork as a memento of their "birthday". On the final day, the banner was laid out on 2 big tables, and campers and staff signed their names in Sharpie, following a long-standing camp tradition. The island that contains Pierce's signature ("Mouse Island") was reserved just for his parents and sister to sign. When Pierce got home Friday, he dug his camp shirt out of his trunk and put it on. He stuck out his chest and ran over to me. I said, "You drew the picture on the back." He spun around and tried to look at it. I asked him if he was proud of himself. He grinned and answered, "Yeah", then went on his merry way. I don't think he has any idea what a big deal this is to me and everyone who knows and loves him. This kid that just couldn't figure out how to tap into his creative side when he was little, has discovered a skill that I could never have imagined he had within him. This child that's known by all of the youth group as a quirky teen that can make you laugh with Pixar movie quotes, has created something so special that these teenagers were moved to tears. Will he ever fathom the enormity of this moment? Teens and adults are in awe, but Pierce?...he just knows he had a great week at camp and got a pretty cool t-shirt.

Faking It

On March 6th, I auditioned for an annual production called Listen To Your Mother. The cast reads essays they have written about motherhood. These can be aspects of being a mom, having a mom, or having/being a mother figure. I went to last year's show with a friend that has read my blog and knows a couple of the producers. I didn't think I could possibly write anything remotely as good as what I heard, but my friend encouraged me to audition anyway. There were about 90 people vying for a dozen slots, so I knew my chances were slim going in. Still, I summoned up some courage and gave it a go. The producers could see right away that I was a nervous wreck, but they were not at all intimidating and did their best to put me at ease. I choked up a couple of times, but I managed to get through the piece without totally losing my composure. Yesterday morning, I awoke to find an email in my inbox informing me that my piece was not selected for the show. A few people knew I was auditioning and wanted to read what I wrote, so I'm sharing it on my blog. I'm grateful to Listen To Your Mother for encouraging people (especially women, but not limited to) to tell their stories. After all, we ALL have a mother-story of some sort; even if you grew up without a mom or have memories of a difficult childhood, it's your story and it should be told. Will I audition for next year's show? I don't know. I'm learning that as long as I'm in a chorus that competes every April AND I work in a garden center, I should limit the activities on my Spring calendar to try and preserve some sanity (which is why I'm not totally disappointed that I didn't get in. It's one less thing on my to-do list.) Why did I audition in the first place, if I'm so busy right now? LTYM was another opportunity to step out of my comfort zone and do something challenging and scary. It's good to stretch yourself. So, without further ado, here is my audition piece. BTW, I say Pierce is 18, because if I'd made it into the show, he would be by then. We still have a few more weeks of 17.

My son loves Legos, Pixar movies, and Minions. His favorite book is The Very Hungry Caterpillar, and he has heard or read it so many times, he can recite it from memory. At the dinner table, he sits on his haunches with his knees tucked under his chin. He runs everywhere he goes. He burps loudly in public, and we have to remind him to use his manners. When friends or family come to visit, he proudly shows off his latest artwork or Lego creation. He learned a joke this summer that he delighted in repeating: What is the pirate's favorite letter of the alphabet?...ARRRRRRRR. He LOVES to sing, especially songs from VeggieTales videos. He plays them on the computer and sings "Oh wheeeeeeeere is my hairbrush?" as loud as he can.

He sounds like a typical little boy...only he's not. My son is 6 feet tall, 18 years old, and autistic. He is a junior in high school. But while all of his friends are visiting college campuses with their parents, we must contemplate a different future. Instead of the "college track", we are on the "survival" track. He attends a high school with a fantastic life skills program. Oh we pretended for several years that he would obtain a college education. But one day as a 12-year-old, his usual habit of riding laps around the house on his bike turned into an adventure when he drove away and disappeared. This prompted us to call 911 and led to a team of police stopping 5 lanes of northbound traffic on interstate 65 where they finally found him, 5 miles from our house, riding frantically beside the concrete barrier. It was at that point we realized that working so hard to water down facts about ancient Mesopotamian culture in a way he could understand was a waste of energy, if he couldn’t grasp the concept of how dangerous it was to cruise down the interstate among traffic going 70 miles a hour.

So here we are at 18. I get lots of questions. "Will he graduate with his class? Will he go to college? Will he get a job? What kind of job does he want to pursue? Will he live at home with you, or do you think he can have his own place?" Fortunately, he qualifies for services through the school system until he's 22-years-old.

Through all of his challenges, he's made some wonderful accomplishments. When I share these achievements with friends and family over social media, I get high praise: "You're such a great mom!" "You and your husband are wonderful parents!" I even get the “God knew just what he was doing by giving YOU a kid as special as your son.” But I'm going to let you in on a secret. I am just making this up as I go. The honest answer to most of those questions I've been getting is "I don't have a clue what's next." People have asked me if there are any group homes available for him locally. I don't know. I haven't even looked. Last year, there was a special on Dateline about parents caring for their adult autistic children. I got reminders from friends; people posted about it on my Facebook page. It is on our DVR at home, unwatched. I just can't go there. Not yet. My façade shows a mom who's got it all together, but inside, I know I'm faking it. I don't like to be less than genuine by sharing only the good stuff on social media, but I do leave out the ugly parts of the story. I don't tell you about those Saturdays when he's been sitting on the computer a couple of hours singing and repeating the same line of dialogue over and over and OVER again until I'm ready to throw myself from the second story window. I don’t talk about how jealous I am of his friends' parents as they watch their kids drive wherever they want and help them pick out a college. Their sons will likely get married and have kids of their own, while my son is stuck in eternal childhood. 

Still, even though I've been winging it, I have a deep-seated faith that we will make it through this next phase of my son’s life without too many bumps or bruises. After all, he’s made it to adulthood without me ruining him. I tend to believe he thrives in spite of me, not because of me. Maybe that's why I'm not overly concerned with mapping out right now the future that will happen 4 years from now, when his time in public education is over. God knows autism is constantly throwing curve-balls, so even the best laid plans fall to pieces sometimes. Parents of typical children may see me and other parents of special needs kids as these amazing, strong people. But we’re just doing what most parents in our shoes would do: We carry on, and tackle whatever life throws at us to the best of our ability. I’ve always wanted to be a mom, and even though the challenges of raising an autistic child was not in the brochure, bailing when parenting gets too hard for any mere mortal was NEVER an option.  So I’m strapping in for the dark tunnel full of unknowns on this windy road we're traveling and trusting we’ll come out unscathed on the other side.

So Close, Yet So Far Away

Last Thursday, April 24th, we celebrated Pierce's 16th birthday. It's difficult for me to wrap my brain around the fact that I've spent 16 years of my life as a mom. In some ways, Pierce is very much like a typical 16-year-old boy: Sleeps like a teenager, eats like a teenager, has the deep voice, facial hair, and acne of a teenager, certainly smells like a teenage boy. To look at him, anyone that doesn't know him would think just that; typical, normal. However, I had to write out questions for him to answer about the kind of birthday celebration he wanted. Typing out a response is sometimes easier for Pierce than trying to verbalize. While he asked for a chocolate cake and dinner at Applebee's, the activity he requested was anything but typical for a 16-year-old boy. He wanted to go to the LifeWay Christian Store and look at the VeggieTales display. He picked out a couple of videos that we don't own yet. VeggieTales was the first thing he every watched on television as a baby, and he's been obsessed with them ever since. When Pierce started high school last fall, I was terrified for him. I knew that boys he'd gone to middle school with and that were in the youth group with him would be there, too, but this place seemed huge! We walked the halls over and over at orientation to help him get familiar with his schedule. We tried to open his locker, and couldn't. I tried my hardest not to dissolve into tears in front of all these teenagers. Luckily, a friend from the youth group was there to help; I think I may have scared him, though, with my blubbering, once he offered to help Pierce around on his first day. I barely slept a wink that night, worried about how he would survive, having flashbacks to my own miserable days of high school. I walked him to his first class, well aware of the stares we were getting from teens that thought I was being a crazy, overprotective mom. Once we made it to the first class, I was greeted by teachers and assistants that assured me Pierce would be well taken care of. I barely got out to the car before turning into a giant puddle, tears of relief consuming me.

When Tim and I were on our cruise last December, we had to engage in lots of small talk with people we didn't know. Of course, we were always asked if we had kids, and then they'd want to know how old they were. I don't usually volunteer the fact that Pierce is autistic, but it normally comes up, especially now. When we tell people we have a 15 (now 16)-year-old son, 99% of the time, the response is, "Oh! You're about to have a driver in the house!" We then have to explain why we are not, in fact, on the cusp of having a teen behind the wheel. Most days, I'm fine. I've made my peace with life being different for Pierce than I had planned for it to be when he was a baby 16 years ago. But it's when his peers approach those milestones that Pierce is going to miss that I have a bit of a set-back. A couple of weeks ago, we were dropping Pierce off at a youth group function. One of the other 9th grade boys was just pulling up...and getting out on the driver's side to let his mom take over. I have to admit (after I got over the shock of seeing this KID DRIVING!!!, and then reminding myself that he is, in fact, old enough to do so), I felt a twinge of jealousy. Pierce's peers are great. They consider themselves Pierce's friends. For as long as they are all in high school together, I know they are going to make him feel like he's one of them. But these boys are all going to get their licenses soon. There will be parties and sporting events to attend, after-school jobs to go to. Before long, they will all be sending in college applications. I know they won't do so on purpose, but eventually, they are going to leave Pierce behind. Pierce is in a program at his high school that focuses on life skills. He works in a cookie store at the school every day: baking the cookies, washing dishes. Eventually, he'll be taught to work with the money and interact with the customers. I'm so very thankful that a program like this exists; that he won't just get turned out into society once high school is over, with a "Good Luck!" and a pat on the back. He LOVES working in the store. But it does make me sad that he won't go to college and follow the path that his friends will take. The house that we purchased 19 months ago, has a full basement. There is a bedroom and bathroom down there. This is where we decided Pierce should be. I don't know if he will ever live be able to live by himself as an adult, so we are prepared to make the downstairs his apartment. Ideally, I'd love for him to live in a sort of group home so that he can gain some independence from us. 

I've come a long way since that day 11 years ago, when we first heard a doctor tell us our son has autism. I've learned that one never fully leaves the stages of grief. I will revisit them as time goes by. There will be more days like today that will give me pause, and make me wonder what life could be like for Pierce, for our family, without the diagnosis. But, there will also be great days. Like last Friday, when Pierce competed in his very first Special Olympics. He trained every day at school, and signed up to run a 400M. He crossed the finish line with an exuberant, "I WON!!" (He actually took 2nd place). The look of pure joy on his face when he was called to the podium to accept his ribbon is one I'll never forget. While he may not achieve the same milestones that his friends are, he IS reaching goals of his own everyday. Goals I didn't envision years ago when autism was new to us and I was just trying to make it through the day without a colossal meltdown (from him OR from me). So when I have these pity parties, I have to remember what Pierce has managed to accomplish in his 16 years, and try to focus on the successes that are possible for him in the future. 

Heart Of Darkness: Part 2

Fast forward to 2002. Summer of that year was very hard. Pierce was losing all of the skills he had learned that year in school. We were still being told that he just had a speech delay, and that it would be gone by Kindergarten. By the time school started again in the fall of 2002, his teacher could tell something wasn’t right. About that time is when I started having trouble sleeping. By Christmas, Pierce's teacher suggested we get a psych. evaluation for him. I had absolutely no interest in celebrating Christmas that year, but I had to for the kids. I start to hate being around other moms. They would talk about their normal children, and I felt I had nothing to contribute to the conversation. I started to feel so jealous. I couldn’t stop going to events, because people would wonder if something was wrong. I wouldn’t want anyone to talk about me. I’m a pretty good actress (or so I’ve been told), so I would go to scrapbook night, or a Pampered Chef party and no one suspected I was screaming inside.

Winter of 2003 was an especially bleak one. I have a pretty detailed account in my therapy journal, but I'll spare you and give the highlights. On January 14th, the 3rd report card came out. There, in black and white, was confirmation that Pierce was in serious trouble. In addition to our struggles with Pierce, I started to think I'd never see the sun again. We had lots of snow (a total of 17 inches here in Nashville, which is a big deal for us), and cancelled school. On January 16th, 8 inches of snow began falling while kids were in school. Everyone has a story about that day. Total chaos. Once school was finally cancelled, it took me 2 hours to get to there, and another 2 hours to get home. In February, Reagan got the stomach flu and became so dehydrated that she had to spend about 24 hours in the hospital. These incidents may feel like no big deal to you, but for me, they were pushing me closer and closer to my breaking point. In March, we began the process of having Pierce evaluated for autism. I've already explained in previous posts the grieving process that happened during this time. I wasn't grieving a child lost in death, rather the loss of my dreams for him. I started to feel like a monster. I didn’t want to adjust to having an autistic child, I just wanted a normal child. I hated myself for feeling that way. I didn’t feel like a devoted mother and a loving wife. I wasn’t sleeping at night, so I was exhausted all day. I also started to feel pain in my joints. Because of my extensive family history of Lupus, I began to worry that I may finally have succumbed to the disease as well. All I felt was despair. I would cry out to God, but I felt like he wasn’t listening to me. I would go to church and to Ladies Class and leave in tears. Occasionally this was actually being said, most times it wasn't, but what my sick mind was hearing was that I wasn’t good enough. If I just prayed harder and studied harder and trusted God more, my pain and hopelessness would go away. I would ask God, “What am I doing wrong?”. Eventually, I reached a point where the only thing I could feel was numbness. I had no more tears to cry. I couldn't hear God or feel His presence, and I had no energy left to try to speak to Him. The pain of depression is crippling, but to feel nothing is absolutely terrifying. I may have had a few thoughts of suicide, but mostly I just wanted to run away. I wanted to jump in my car, leave everyone and everything, and just drive, as if I could drive away from my demons. Finally, by the end of March, Tim tried to get me to talk about why I was so distant. I told him that I felt absolutely no love for him at all. That's when he knew I desperately needed help. 

Tim and my mother encouraged me to talk to my doctor about everything I was experiencing at my upcoming annual checkup. I had her test me for lupus and check my thyroid, but she was pretty convinced that I was in a deep depression. When depression goes on long enough, it can start to cause you physical pain as well as mental anguish. She felt like that was what was happening to me. Sure enough, the lupus and thyroid tests came back normal. I told a friend, one of the very few I had confided in, that I wasn’t sick, I was just crazy.

Blessed Are The Pure In Heart

April is Autism Awareness Month. It also happens to be the month in which our son, Pierce, celebrates his birthday. In less than two weeks, my boy will be (gulp)...a teenager. I can hardly believe it, though he's had acne and a mustache for months now.

Last week, Tim and I went to a meeting for parents of children that would be entering the 7th grade in the fall to learn about the church's youth group. As most parents would, I had some mixed emotions about being there. The youth program at our church is fantastic. Pierce is going to be surrounded by great kids and Godly adults during his teen years. However, I got a little sad when the youth minister began to talk about one of this group's main goals: To help our teens become mature disciples of Christ. This, for us, just isn't going to become a reality. I began to think about a parenting class that Tim and I attended at our former church some years ago. Parents of a child with Asperger's Syndrome made a guest appearance one week. Their son was a teenager, and they talked about some of the struggles they'd had as parents. When they asked for questions at the end of class, I raised my hand. I tearfully asked if their son had been baptized, and if he understood what it was all about. I should probably first give you a little background to explain why I asked this question. You see, I grew up in a Church Of Christ. There is a very strong belief that baptism is THE act that saves your soul. If you want to start a debate in the CofC, just pose this scenario: A man/woman makes the decision to accept Jesus Christ as their Lord and Savior. They get in the car and head to the church where they will be baptized. However, on their way to the church building, they are killed in a horrible car accident. Will this person enter into Heaven, or be turned away at the pearly gates?

Pierce is nearly 13-years-old, and he still LOVES Veggie Tales, Blue's Clues, Dora The Explorer, and other such shows aimed at preschoolers. Honestly, he is obsessed with quoting lines from these shows. I won't lie; some days, it drives me absolutely CRAZY. I want him to love shows that a normal 13-year-old would watch. I want him to talk about cars and video games and other such stuff. I also want him to keep up with his peers at church and one day become a "mature disciple of Christ". One Sunday morning, when I was struggling to keep Pierce from talking out loud about Blue's Clues, I got a smack in the face. The sermon that day was, "Blessed Are The Pure In Heart". At one point, our minister started giving examples of kids with special needs and their innocent hearts and minds. I began to cry. Here I was, wanting my kid to be a normal teenager, when Jesus was looking into my child's heart and saying, "THIS is what I want!".

The answer those parents in that class years ago gave me was this: Yes, their child had been baptized, because he wanted to be. They didn't know if he fully understood Christ's sacrifice, but they believed he loved the Lord with all of his heart. It is not my intention today to debate baptism's role in a person's salvation. It is such a slippery slope, and I don't want to trip and roll all the way down. I'm simply telling you the thoughts that I've personally wrestled with. I did my time worrying about Pierce's soul. It's going to be so hard to see all of his friends mature and accept Christ, and I don't know if Pierce will ever "get" Christianity. But, if he never comes to us and asks to be dunked in a tub of water, I will not mourn. His heart is pure, which is just the way Jesus wants it. And if it's good enough for Jesus, then it's good enough for me.

A Series of Unfortunate Events

I've had this blog for nearly a year now. When I started, I was full of motivation and ready to make some changes. I've had some personal setbacks throughout the year, as did most of Nashville. Let me tell you, the Noah's Ark jokes got old reeeeeeally quickly. With each speed bump, I managed to recover and try to keep a positive attitude. However, the last few months have been quite a challenge for me. The hits just seem to keep on coming, and I'm ending the year shell-shocked and limping across the 2010 finish line.

In late August/early September, my sister had a health crisis. She's been battling illness for many years since a Lupus diagnosis at the age of 15. I could go into all of the other diagnoses that have stemmed from that, but I'd need several blog posts to accomplish this. Anyway, she developed some internal bleeding that kept her in one hospital or another for a couple of weeks. It was obviously stressful for the whole family. The bleeding stopped somehow, and we never got answers as to why or how it all began. We thought she was on the road to recovery, but just a couple of days ago, she began experiencing numbness and memory loss, which made us suspect some sort of stroke. She is hospitalized once again; I pray she doesn't have to spend her Christmas there.

A couple of weeks after my sister's initial crisis, we experienced the nightmare of Pierce's disappearance (If you haven't read it already, details are in the post "Every Parents Worst Nightmare"). This set us on a journey we weren't ready to take. Realizing he was oblivious to the dangers around him and faced with very low test scores, we came to the realization that Pierce would not be attending college one day; instead, we needed to place him in Life Skills classes that would prepare him to, hopefully, live on his own one day. Just when we thought he understood how dangerous his wandering had been, we had another scary incident in October. He was upset about something at church, and ran out of his Sunday School classroom. After searching for some time, a member of our church pulled up in the parking lot with Pierce in her car. She had seen him in the Chic-Fil-A parking lot down the road from the church, and she coaxed him into her car with candy and toys. Within a couple of days, I got Pierce in to see a Pediatric Neurologist. She started him on anti-anxiety medication. We're still working on getting him on the right dosage. I can't even begin to convey how emotional this has been for our whole family.

Tim's job has been both a blessing and a curse. We're so very thankful that he has found work in our still struggling economy. Construction is an industry that has yet to fully recover here in Nashville. That being said, we've had almost too much work lately. In the meantime, the remodeling we've done on this very old house has begun to fail, and we've been faced with some home repairs of our own. When Tim comes home exhausted from working all day with some very needy clients on the problems with their homes, what do you think is the LAST thing he wants to think about? I'm sure you can imagine what a strain this has been on our home life.

Last week, I went on a field trip with Reagan's chorus. I was gone for all of two hours. When I came home and walked into our living room, I noticed our TV was gone. I walked back into the kitchen and could see into our bonus room. The glass in our back door had been smashed. We'd been robbed. They took computers, wii, xbox, nearly all of the games for both, cable motem and routers, an old video camera, and two pieces of jewelry: a broach belonging to my great-grandmother and Tim's wedding ring. This wasn't our first break-in. Almost five years ago, Reagan and I came home to find a man and his girlfriend ransacking our house. They were never caught. We've made an insurance claim, but there's a $1000 deductible. I wasn't through with our Christmas shopping, and now I have to spend money on replacing stuff these crooks stole. They didn't just take our stuff, though. They dealt me a final, crippling blow to my emotional state so that I'm ready to climb into a hole and hibernate for the remainder of winter. To add insult to injury, we celebrated our 17th wedding anniversary this past Sunday with a fender-bender due to snowy/icy roads. UNCLE!!!

I'm really sorry that the final blog post of the year is so very negative. Quite the contrast to my last post, huh? I figure I'm among friends, though, and if you can't be honest with those you love, then just what kind of friends are they? If I had a message, I guess it would be this: Be kind to everyone you encounter this Christmas season. You have no idea what kind of burdens they are carrying. In the immortal words of Tiny Tim, "God bless us, everyone!" I'm praying for a kinder, gentler 2011. How about you?

Every Parent's Worst Nightmare

Taken 2 days after the incident. 

You can see the band-aid on his knee due to being tackled to the ground.

By now, most of you that read this blog have heard about the horrifying events of this past weekend. Since it is still dominating my thoughts, of course it is the subject of this week's post. I'm going to retell the story and add in a few of the details I left out when I wrote a note about the incident on Facebook. This is a pretty lengthy post.

On the afternoon of Saturday, September 18th, my son, Pierce, wanted to ride his bike. As you all know, our son is autistic. He normally rides in the driveway or makes laps around the house and yard. We thought he understood that he was not to leave the house. At 4:45pm, my husband, Tim, and I were in the living room while Pierce rode outside. Twenty minutes later, it was time for me to pick up my daughter, Reagan, at a play date. I went outside and didn't see Pierce or his bike. I only felt a very slight panic, because I assumed he was in the yard somewhere playing (we have about 4 acres of property). I ran over to a couple of spots in the yard (swing set, trampoline), but didn't see him. The panic increased slightly. I ran back into the house and told Tim that Pierce wasn't in the driveway or playing in the yard. He figured Pierce was in the yard somewhere, so he told me to go pick Reagan up and he would look for Pierce. On the way, I had my cell phone in my hand. I knew Tim would call me the minute he found Pierce, so I could stop panicking. The phone wasn't ringing. I called his cell; no answer. I got to Kaylee's (Reagan's friend) house. I chatted with her mom, April, while Reagan got her stuff together. I was there about five minutes, when my cell phone finally rang. Relieved, I answered, just sure that Tim had found Pierce and all was well. "Did you find him?", I asked. "NO", was Tim's answer. Tim had gotten in his car and driven around some areas close by, and was coming up empty. Now, I was pretty panicked. I hung up and told Reagan to get in the car: We had to go NOW. I told April that Pierce was missing. She wanted me to keep her posted. We flew home. Reagan was very worried and scared. I told her that we needed to go home to make sure Daddy and Pierce weren't there and to lock up the dog that I was certain Tim had not had time to deal with. Then we would go look for Pierce. I got the dog put in her crate and was running back to the car when Tim drove up without Pierce. It was about 5:35pm. It was time to call 911. Tim left again while I talked to the operator. She asked his age, at which time I told her that Pierce was 12 and autistic. She asked what color shirt he was wearing: orange. She asked what color pants and I started to cry: "I don't know!". When I started crying, Reagan did, too. I knew I had to try to keep it together so that I didn't freak her out even more. I was told the police were on the way. I began calling family and friends and begging them for prayers. My family was frantic. They began posting urgent prayer requests on Facebook. One of my hens said she and her husband were on the way over to help. Tim got back home before the cops arrived...and he still hadn't found Pierce. That's when I really lost it. It took the police about 10 minutes to get here. By that time, it had been one hour since we saw Pierce last. When an officer finally arrived, I gave information while Tim left again. He asked me for a description of Pierce. Reagan had the presence of mind to remember the school ID with Pierce's picture on it hanging by the front door. She gave it to the officer. Another officer arrived. He began searching the property; Reagan looked, too. I could hear information about Pierce being passed along over the police radio. I called April (the mom of Reagan's friend) and told her that Pierce was still missing. She offered to help look, and I asked if I could send Reagan back with her. April arrived, and she asked for a picture of Pierce. I couldn't believe I hadn't been passing those out! I found the stack of pictures from summer camp. I don't know April very well, but I started sobbing and she hugged me and assured me that Pierce would be found. She took Reagan and Kaylee to her mother's house so that she and Kaylee's dad could go out and search. Tim came home again. We needed to call someone from our church, but there was a retreat for our church families going on out at Henry Horton State Park. We didn't know who was there and who was home. A couple from our life group was at the retreat, but we didn't know if they'd have a cell phone signal at the park. Tim looked up some numbers, and I had just entered the number of the couple from life group into my cell phone and pushed send, when the police sergeant called me over, so I hung up. "This is what you've got to do", he says. "We've found your son. He's on the interstate." I began to freak out, but he said, "There's no time to freak out! The police are trying to get traffic stopped, but he's scared and frantic, and we need you out there NOW to calm him down. Get in you car NOW and follow the officer out there!". I went inside and yelled for Tim. We jumped in the car and took off. It was 6:30pm. I don't know why they couldn't just take us out there in a police car. My theory is that they needed Pierce to see my car as a way to help calm him. We very quickly realized that this officer was clueless as to which direction on the interstate he needed to go. We had to make a U-turn. I gagged quite a few times, I really thought I was going to throw up or hyperventilate. My friends called to tell us they had arrived at the house, and we told them what was going on. As we went further down the interstate, Tim and I couldn't believe this was right. Pierce couldn't possibly have gotten this far away from home. We topped a hill and saw a police barricade and a TDOT truck redirecting traffic. There were 2 lanes closed. I could see Pierce's bike propped up against the concrete barrier. Tim told me I needed to calm down before running over there, but the car had barely stopped moving before I jumped out. Pierce was in the back of a squad car, crying. I squatted down beside him and tried to comfort him. I could see a few scrapes, and there were indentations around his wrists where the officers had restrained him. An officer explained to Tim what happened. He was driving northbound on interstate 65 when he spotted Pierce driving his bike in the inside emergency lane (beside the concrete barrier) heading southbound. He stopped to talk to Pierce, but Pierce panicked. He then drove his bike across ALL 3 LANES OF 70 MILE AN HOUR TRAFFIC to the emergency lane on the other side. The cop followed him and tackled him, bike and all. When I heard this, my knees turned to jello, and I had to sit down. After a few minutes, the police decided he was calm enough to walk over to our car. They had a few more questions for us, then we were free to go. Our friends were waiting for us back at the house. Two of my hens had dropped everything to be there for me. They walked over and we had a big group hug. One of my hens had brought her husband to help look, and her 9-year-old daughter, Olivia, to keep Reagan company. Olivia said she really wanted to be there, though, to pray with us.

We are so very thankful to everyone that lifted us up in prayer during that time, and continue to pray for us today. We praise God for a happy ending, when it so very easily could have ended in tragedy. I sobbed through all of the praise music at church the next morning, especially the song "Mighty To Save". We were so freaked out at the idea of Pierce on the interstate, but Tim had a different perspective the next day. At least on the interstate, he was visible. If he had been riding in some random neighborhood, who knows how long it would have taken to find him? He was found one hour before dark. I still have a lot of questions. All I know is how this started and how it ended. I don't know how Pierce got from point A to point B, and he can't tell us. We hope to get the police report soon, but I don't know if any questions will be answered. Pierce is okay today. We've asked him a couple of times where he was trying to go, and he says he doesn't know. Reagan was pretty shaken up, so I asked if she wanted to talk to the school counselor. She did that on Monday. Tim and I are okay most of the time. I think we're still processing. This is a game changer. We have new issues to think about now. I thought the days of Pierce wandering off were behind us. These cases are all too common, but we never thought it would happen to us. I hope and pray none of you ever have to experience the fear that we did.

*UPDATE (9/17/11)--It is one year later. We still have never seen the police report, but I have gotten a little more information about what happened that day. There is an officer assigned to Pierce's school, "Officer Fowler". He's taken quite a liking to Pierce. He told me a few months after this happened that he had been listening to the police radio that day. He heard the description of the missing child, and thought it was awful, then he heard Pierce's name and couldn't believe it! I told him that I'd been wondering if people on the interstate that day had seen him, thought it was strange and called 911. Officer Fowler said that's exactly how the police were able to find him; there were drivers calling 911. Praise God! I wish I knew who these people were so I could thank them in person!!

I'm a bit shaky reading over this again, even though I've told this story numerous times over the last year. The listeners are always shocked, and they usually comment that they can't believe how calm I am telling it. I've had some time to process it, I guess. I never, ever want to feel that panic again.

I'll Be Back

The summer has flown by! I can't believe that the first day of school is only a little over two weeks away. I've been chewing on some things, but I haven't found the time to blog. Some of that has to do with the fact that my children have taken over the computer for the summer. My dear, sweet husband got me an iPad, but typing anything longer than a status update on Facebook just isn't very feasible with a touch screen. When I am able to pry the computer away, I can't complete a thought due to the constant interruptions (I'll expand upon those in a bit). So, I'll get into the more thought-provoking subjects in a couple of weeks when I have (slightly) more peace and quiet. In the meantime, here are a few highlights of our summer.

On the very last day of school, I was checking on my vegetable garden when I heard a tiny cry. When I went to investigate, I found a very newborn kitten. He was all alone, dirty and covered with fleas. Now, I am not a cat person. However, I couldn't just leave it to die, so I went into action. I rushed him to a vet where they guessed he was just a few days old. We got some formula and bottles, some basic instructions, and then the vet clinic wished us good luck. We set him up in a box with a heating pad and fed the kitten every three hours. That was nearly nine weeks ago, and Milo is now a playful, happy kitten. We've decided to keep him as a companion to Reagan's cat.

Both kids went to church camp this year, and had a FABULOUS time. A lot of thought was put into ways to accommodate Pierce. There were many staff looking out for him at all times, but the best thing to see was how the other 6th grade boys treated him. When we pulled up at the camp, one boy ran to our car and greeted Pierce. He was in Pierce's cabin, and couldn't wait to show him where they would be staying. I knew he was in great hands. Reagan had a couple of moments of homesickness, but so did her best friend, so she told me that they cried together sometimes, and then they were okay. They can't wait to go back next year!

We've had lots of activities to keep us busy, and Pierce has been a trooper for most of them. We had one incident during one of the free movies. I still don't know what it was that set him off, but he was out of his seat and running out of the auditorium before I could react. I chased him down and reached him just as he was about to burst through an exit and into the parking lot. That's been our only major snafu. He's been repeating things A LOT, so I'm looking forward to getting him back to a consistent school routine with regular speech therapy.

Our last big news of the summer is that we got a puppy! I had been wanting a puppy for quite some time. We had put down our sweet, old Pekingese last fall, and I'd been missing having a dog around. It was probably crazy to do this now in the midst of raising a kitten, but I thought it would be fun to have the two grow up together. She is a mostly black Boston Terrier/Pug mix that we got from a shelter in Kentucky. She's about two months old and very sweet natured. Midnight has her moments of friskiness, but she'd much prefer to lay in your lap and veg. While the potty training and sleepless nights are stressful, I think she makes a great addition to our family.

So that's our summer in a nutshell. Hope yours has been fun and safe. I'm looking forward to getting back to the blog!

School's Out For Summer

It's the day that I dread all year: the last day of school. Well, that's not entirely true. While the kids were super excited this morning and I was less than enthusiastic, Reagan said, "You don't like summer, do you mommy?" I actually do like summer for the first month. It's nice to wake up a little later than normal and have nothing to do, nowhere to be, no homework to make you feel like a complete idiot (Are you smarter than a 5th grader? Apparently I'm not!). If you want stuff to keep the kids busy (camps, summer reading activities at the library, etc.), it's pretty easy to find for the month of June. But for some reason, it becomes harder to find programs that run past the first week of July. So by mid-July, I have two kids that are needing stimulation, and I've run out of steam.

Also, as I've said before, Pierce thrives on a regimented schedule. Without one, he's much more prone to moments of frustration. I'm filling our calendar with many opportunities to stay busy, but Pierce had an episode on Sunday that makes me fearful of taking him to public places on my own. Before heading to Panera (our usual Sunday lunch stop), we had to stop at my father-in-law's house to drop something off. Pierce loves grandpa's house, because there is a pool. He didn't protest when we left, so I thought he was alright with us not going swimming that day. But when we got to Panera, he freaked. He tried getting away from us and ran towards the very busy entrance to the shopping center. He was way too strong for me; Tim tackled him. If he hadn't been there, I don't know if I could have regained control of Pierce.

So far, we have a few church activities (including camp for both), summer reading through the library, dance camp for Reagan, the "Kids Bowl Free" program, and free summer movies. If you have some fun summer plans, I'd love to hear them. Also, if you have a pool to share (hey, I ain't too proud to beg!), we may need it. Grandpa may or may not be putting the house on the market. It probably wouldn't show well with a couple of noisy kids splashing around in the pool! Have a safe, fun summer and shoot up a prayer or two for me. Lord knows I'll need it.

Random Acts Of Kindness

One of the things I worried about the most early on was that Pierce would be teased for being different. While we have had the occasional episode of Pierce being mistreated, I have been blessed to witness acts of kindness from kids and adults, friends and strangers. Pierce was accepted right away by his peers in Kindergarten. His teacher told me about how the children treated him while they were learning to read. Kids that age can be antsy and impatient, especially when someone is taking too long to read. These children were no different, until it became Pierce's turn. No matter how long it took him, they became quiet and waited patiently for him to finish. There were a few kids (mostly girls ;) ) that loved to help but had to be told not to help him quite so much. Bless their little hearts, they just wanted to take care of him! When Pierce was in 3rd grade, we felt that he was finally ready to participate in his first school program. He would be waving a long ribbon and singing a couple of songs and then playing the xylophone for a couple more songs. They put him next to a couple of his classmates. When he seemed to lose focus during the ribbon waving, the girl beside him would help him remember what it was he was supposed to be doing. And at the xylophone, a girl stood right behind him ready to help if Pierce needed her. From what I understand, several kids wanted to be the ones that got to help Pierce. I only heard of one bad incident in all five years of elementary school. Last year, a new student thought it would be funny to make Pierce kiss one of the girls in their class during gym. She rounded up a few more troublemakers to hold Pierce and this classmate and force them together. The rest of Pierce's class was furious when they realized what was happening and immediately ran for help. I talked to the grandmother of the classmate that Pierce "kissed" the next day, and she told me that along with being embarrassed, Britney was really sad that Pierce had been treated so badly. On Pierce's last day of elementary school last year, it seemed that every employee of the school knew him and were wishing him good luck for middle school. Even some parents that I didn't know knew who Pierce was and were telling him to have a great summer. The love for him at that school was almost overwhelming.

Kids and adults at church are much the same way. At our new church, several kids almost always make an effort to greet Pierce and give him high fives in the hallway. I have heard more than one story of how amazed a Sunday school teacher is at how their class seems to rally around Pierce. I am so thankful for these teachers, but they tell me THEY are the ones receiving the blessing because of the chance to work with Pierce. A couple of my favorite stories happened at a church camp a few years ago. Every year, families from Antioch spend a week in June at Pickett State Park. We call it Antioch Church Encampment, or ACE. I was encouraged to go for the first time in 2004 when the kids were 6 and 3. Tim couldn't get the time off of work, so I was a single mom for the week. All of the moms there offered me an extra hand whenever I needed one throughout the week. One little boy Pierce's age took a special interest in him. He joined us for meal times and hikes and followed Pierce around. One day, he asked me why Pierce didn't have his bike with him at camp like most of the other kids did. I explained that Pierce didn't know how to ride a bike yet. My heart just melted when his face lit up and he exclaimed, "I'll teach him how to ride my bike!". It didn't even occur to him what a challenge that would be. Of course, Pierce didn't learn how to ride a bike that week, but this child wasn't discouraged and continued to call Pierce "friend". The craft for the week was rocket building. Most of the dads helped their kids, but I didn't have a clue where to begin. One of the dads took Pierce's kit and built the rocket for him, in addition to the one he was building for his family. Pierce and Reagan helped with the decorating. On the day of the launch, I don't know who was more excited: Pierce or everyone else watching! A couple of dads helped him set it up. When it was launched, Pierce got more enthusiastic applause than anyone else that launched a rocket that day! Another dad helped him run through the field and find the rocket.

I guess the stories that move me the most involve the kindness of strangers. You expect your friends and family to show compassion, but the times you see this demonstrated by complete strangers is when you truly see the face of Christ. Some of you may have already read this story, as I posted it on Facebook last summer. It still moves me today, so I'm posting it again.

The kids and I decided to take in "Horton Hears A Who", the free movie today, at Opry Mills. We got there early so that we could get seats. As usual, when something is free, the participants are plenty. They had not opened the doors to the theater yet, so there was a line along the wall. We ended up right in front of the entrance/exit to the mall. A day care group was a few feet ahead of us. One of the kids began to wail. If you've spent any time around Pierce, you know that the sound of a crying child really distresses him. Pierce began to cry and threw himself to the ground. I wrestled him up (not an easy task as he is 11 and now eye-to-eye with me) and offered him his earplugs. This worked for a few seconds, but the child continued to wail. When Pierce is in a stressful situation and is faced with the option of "fight or flight" he will ALWAYS choose "flight". He realized, at about the same time I did, that we were right at the automatic doors. He decided to make a run for the parking lot. I grabbed the back of his shirt, and this threw him off-balance. He crashed into the mom (who was holding her small child) behind me. I was mortified! I apologized and braced myself for the condemning glare and stinging criticism that I knew was coming. Instead, she asked, with genuine concern, "Is he okay?". I explained that Pierce is autistic and the noise was beginning to upset him. This mom says to me, "If you need to take him outside for a few minutes, I wouldn't mind holding your place in line." I was so touched, and graciously accepted her help. We stepped outside and began debating whether to stay or go. Pierce kept chanting "go home", but when I asked if he wanted to see the movie, he said "yes". Reagan clearly wanted to stay for the movie, but she understood how upset Pierce was. I offered to get the movie at Blockbuster if we had to leave, and she thought that was a great idea. I saw through the doors that the line was moving. Pierce was willing to try again, so we ran back inside. I looked for the mom holding our place in line, and saw about 4 people waving frantically to us. Two people in front of her, and one behind her were all looking for us and waving! They were nearly at the entrance to the theater. Another mom said as we ran up, "We were afraid you wouldn't make it back in time!" We got to see the movie, and Pierce held up pretty well. We only needed one break in the middle when another child began to cry.

There are many other stories of blessings we have received; these are just a few. I hope that I've been able to give some insights into autism this month that have helped you gain some understanding. I'm enjoying the opportunity to share what I've learned over the years. Thanks for the feedback I've received. God bless you all!

Total Eclipse Of The Heart

I have two posts to bring you this week to wrap up my series on autism. One is happy while the other is sad. I'll give you the sad one today, so I can end on a positive note later this week. I've shared how autism has affected Pierce and our family as a whole, but I haven't talked about the emotional struggle that I've endured. I think it is important to share, because it will help you in your interactions with other parents of autistic kids. Maybe you know someone whose child was just recently diagnosed. You may want to talk with this mom or dad about how they are feeling, but you have no idea how to start since you haven't been where they've been. I'm going to tell you a little of what I was feeling when Pierce was diagnosed with autism. As I've said before, every parent is different, so my feelings may not be the same as those of most parents. In fact, I was diagnosed with clinical depression at the same time Pierce got the autism diagnosis, so that definitely affected the way I processed what was happening. I'm writing this for the same reason I've written of my experiences before; I hope that someone is enlightened by what I have to say.

It's hard to say this, but I felt very early on that Pierce and I didn't bond like most mothers and babies do. I thought that the main reason for this was all of the trauma surrounding his birth. I barely had time to kiss his tiny head before they whisked him away from me, and I didn't get to hold him for the first time until the next morning when he was 18 hours old. I tried to nurse him, but we seemed set up for failure and I gave up after three weeks. I loved him fiercely, but I felt like a connection was missing. As Pierce got older and the red flags began appearing, I did what most mothers do. I questioned myself. What was I doing wrong? Was I not interacting with him enough? Was he watching too much television? Pierce was only a baby, so what ever was going on must be my fault. Society seems intent on laying the guilt trip on moms. There were reports everywhere on how important those first three years were. If you weren't breastfeeding, playing him Mozart, showing him Baby Einstein videos and teaching him to read by the time he was three, then you were a bad mom. I felt like a failure. Talking to other moms only reinforced that feeling. There was a huge baby boom at our church the year Pierce was born, so most of those kids were reaching milestones at the same time. Not my son. Whenever a room full of moms would start talking about their kids, I started to feel like the odd man out. If I ever mentioned something strange that Pierce was doing or a milestone he had yet to reach, I was usually met with blank stares. I began to feel that I had nothing to contribute to these discussions, and I began to dread them. I didn't really want to socialize any more. I forced myself to attend church functions, because I didn't want anyone wondering or talking about why I'd suddenly stopped participating. I started to feel extremely jealous of these moms with their "normal" kids.

When we got the autism diagnosis, I went through a variety of emotions. One feeling was a sense of relief. Finally, the doctors see what I'm seeing! Maybe I'm not a bad mom after all! But, I also continued to beat myself up. Pierce was five when he was diagnosed. Why didn't I try harder to get answers sooner? What could I have done differently? What kind of early intervention had we missed out on because we failed to catch this when he was two? I've already told you how overwhelmed I was with information in the beginning. I would read some of this stuff and feel defeated. I didn't want to learn how to live with an autistic child. I just wanted him to be normal, and having that desire made me feel like a monster. Eventually, Tim and I learned that we had to grieve. We had not lost a child in death, but we were losing the idea of a "normal" son. I had imagined a son that would go to college. That would get married. That would raise a family of his own. Now, we weren't sure if any of the dreams we had for him would come true.

As they say, hindsight is 20/20. I believe that the only reason Reagan is with us today is because we got that autism diagnosis later rather than sooner. There is about a 25% chance that a second child will also be autistic. I don't think we would've had a second child knowing the risks. Also, I wouldn't be the advocate that I am if Pierce were "normal" (I keep putting that in quotes because, honestly, is ANY kid really normal? Normal is a relative term.) Later this week, I want to share some of the heartwarming stories I've experienced over the years as Pierce's mom.

Marching To The Beat Of A Different Drum

I was a bit of a rebel in my younger days. I wasn't reckless, but I did have this desire to go against the grain and question authority on occasion. While age has mellowed me, this trait does reappear from time to time. I tend to have a different opinion than most people in the autism community. As more children are diagnosed, even celebrities are affected. They won't hesitate to make their opinions about autism heard in the media. You may think that because we both have children with autism that I share their views. That is not always the case. I do believe that autism is a growing epidemic and research is necessary to determine how it can be prevented. I commend parents and professionals that are dedicating their lives to finding answers. One of the big questions is whether or not vaccines cause autism. The vast majority of the autism community believe quite strongly that they do. Personally, I do not subscribe to this philosophy. I don't fault the people that do, I just didn't see any evidence of vaccines causing Pierce's autism. There was not an obvious difference in him immediately following any of his vaccinations. I have heard the stories of kids having seizures right after a round of vaccines, and I don't doubt them. I just choose not to fight this battle, because it's not our story.

Another way that I'm different from most in this community is the terminology that I use to describe Pierce. Commonly, parents will say that their child has autism. Some even take offense if their child is referred to as autistic. They see it as a label, and that when a person uses the term "autistic" to describe their child, that person is ignoring all of the good qualities and traits the child possesses. I prefer to say that Pierce is autistic. I feel that it is part of who he is as a person. To say he has autism, to me, sounds as if he has something like a cold that he will get over or can take a pill and be cured of. I pray that one day a cure will be discovered, but for now, I don't believe that changing Pierce's diet is going to rewire his brain so that we can have a conversation. There are other symptoms of autism such as digestion problems that casein and gluten free diets can cure, but Pierce has never had any of these symptoms. That would be one reason we've never tried these diets. I guess I just need to see some more convincing statistics of how well diets work to improve communication and social skills; it's just the skeptic in me.

The last way that I'm different from a lot of parents of autistic kids is how I handle knowledge. I remember well the day that we got the autism diagnosis. We were handed a rather large stack of pamphlets and handouts. I have a tendency to be easily overwhelmed anyway, and for me, this was way too much information at once. Well-intentioned people heard of Pierce's diagnosis, and I was flooded with news articles and websites with even more information. I tend to seek information in smaller bites and only when I have a particular issue that I need help with. I do appreciate that people love our family and want to pass on information they think will be helpful. Just know that even if I don't read things right away, I am filing it away to access it at a later date. I know a lot of parents out there never stop searching for news and reading everything they can get their hands on that pertains to autism. While I do have those moments of voracious reading, I just don't have the emotional energy to be constantly seeking answers. Some might think that I'm not trying hard enough as a parent to learn all that I possibly can to help my son. All I can say is that everyone approaches parenting a little differently, and so far, I think we are doing okay.

My point today is that just like all autistic people are different, so are their parents. While we have much in common, we also have our differences. In that respect, we are no different from all other parents. I really hope I haven't offended anyone with my opinions. I also hope that I haven't come across as ungrateful for information that has been passed along to me. I know that all of you love Pierce and our family and we are so blessed by the support you've shown us over the years.