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.

And That's The Way It Is

Today, Pierce is in the fifth grade, and still in mainstream classrooms for most of the day. An aide helps him keep up with all of the assignments and class changes typical of middle school. His performance in most subjects is on a fifth grade level, with the exception of reading and language. He reads on a first grade level, mainly due to his lack of comprehension. He doesn't have what you would call friends, but he is loved by peers and adults at both school and church. He still receives speech therapy, because conversation is a skill he does not grasp. Pierce uses a lot of what is called echolalia. He is constantly (and I do mean CONSTANTLY) quoting lines from movies, TV shows, commercials or songs on the radio. He becomes very frustrated when his routine is interrupted. He thrives on a consistent schedule. Pierce continues to be bothered by loud noises, especially crying or screaming children. He tries to run from noisy situations, and since he is now taller than me, trying to hold on to him when he is intent on running away in public has become nearly impossible. We avoid taking him shopping, because it really seems to stress him. We do eat out quite frequently, and the whole family is acutely aware of any crying kids in the vicinity and are prepared to calm Pierce the instant he begins to freak out. You will usually see him with earplugs in his ears when we are at church or in other public places. I have a ziploc bag full of them in my purse. He is pretty clueless about what to do in most social situations. I've already noted that eye contact is difficult for him. He's getting better with greetings, but we still have to prompt him to say "hello" or "goodbye". He walks around in his own little world, so he isn't always aware of other people around him. He bumps into people, and doesn't always remember to say "excuse me" or "I'm sorry". Modesty is an issue that we are always addressing. For example, it doesn't occur to him that dropping your pants in the hallway on the way to the bathroom at school is inappropriate. Poor Reagan won't be surprised by the male anatomy on her wedding night as Pierce streaks through the house naked quite often. Of course, I grew up with only a sister, so this could just be a typical boy thing! Hygiene has not been much of an issue so far, but he is going through puberty. I'm sure we'll have to stay on him pretty soon about remembering things like showering and deodorant.

Most of the time, Pierce is a joyful and affectionate child. He loves giving hugs. His laughter is contagious. He is completely obsessed with computers. Wherever we are, if Pierce goes missing, we know to look for the nearest computer and there he will be. We have our computers at home password protected, or else Pierce would be on the computer at all hours of the night while the rest of the house is sleeping. He has the most uncanny sense of balance; I tell everyone that he has cat-like reflexes. Tim and I, as well as many friends and family, can tell you stories of times he's been precariously perched on a ledge, in a tree, etc., but he always lands on his feet. He loves Veggie Tales, but he refuses to watch the videos on TV anymore. He will, however, watch them on the computer. That's one of those weird rules of his that really has no explanation. He still loves to play with the toys and read the books. He also loves all of the Disney Pixar movies.

Though he and Reagan got off to a rough start, they now have a great relationship. Reagan can still occasionally push Pierce's buttons, but I know how much he loves her. He needs to know where she is at all times. They play together and rarely fight. I think the really cool thing is that Reagan has actually stepped into the role of the older sibling. She is quite protective of him. When they were younger, she would speak for him if they encountered a new kid on the playground and explain that Pierce was different than other kids. She makes a conscious effort to avoid things that she knows will upset Pierce (most of the time). She initiates games of chase or hide and seek with him. Reagan is an absolute jewel. God knew that with all of the challenges that Pierce brings us we needed our second child to have a quiet, gentle spirit. She's not perfect; there are still those moments when she tests her boundaries. For the most part, though, she is such a happy, compliant child.

As I said before, this is not the path that I would have chosen, but our experiences raising an autistic child have taught us things we may never have learned otherwise. Pierce is an incredible kid, and I'm so very blessed to be his mom.

The Journey Begins

Pierce had a bit of a rough start in life. I had preterm labor in my seventh month, so I was put on medication and bed rest for four weeks. Five weeks before my due date, I was told it was safe to stop taking the medication, but within twelve hours, I was in active labor. When Pierce was delivered, he was barely breathing. He was immediately placed on a ventilator, and he needed it for the first eighteen hours of life. He received another twenty four hours of oxygen nasally after being taken off of the vent. Pierce spent five days in the NICU, but once we brought him home, he was the picture of health. He became a very chubby and happy baby. With the exception of a couple of ear infections, he had no complications the first year of his life. He was a little slow to crawl and walk, but that is pretty typical for a preemie. He had a couple of words at nine months like "dada" and "doggie", but at twelve months, I noticed that he had stopped using them and was just babbling nonsense. The pediatrician didn't seem too concerned, because he was a preemie. She also explained that she had a speech delay as a child, so our doctor was confident that Pierce would catch up just as she had. By the time Pierce was fifteen months old, I was getting more concerned. When he was eighteen months old, my pediatrician finally decided it was time for some speech therapy. I remembered watching an episode of Montel Williams that dealt with the topic of autism recently, so I asked the pediatrician if this could be a possibility. Her question to me was, "Will he smile at you and let you hold him?". I answered yes, so her conclusion was that he couldn't be autistic. Pierce received speech therapy for over a year, but he didn't seem to make much progress. We noticed some strange behaviors like an aversion to loud noises and horrible tantrums, but we continued to be reassured that his only problem was a speech delay. Reagan was born when Pierce was three months shy of his third birthday. Like most first born kids, his world was rocked. However, Pierce seemed to be seriously disturbed that there was a squalling newborn in the house. He refused to be in the same room with her, and if he had to be around her, his hands were clamped over his ears. One day, when Reagan was only six weeks old, she was crying from her bouncy seat that I'd placed in a chair in the living room. I was busy in the kitchen, and before I could get to her, Pierce, being unable to take the noise any longer, ran to her and shoved her bouncy seat onto the floor. I freaked out and rushed Reagan to the pediatrician. When I explained what happened, this was the first concern I saw from our doctor about Pierce's behavior. Still, she seemed to believe he had some anger issues that needed intervention. When we checked out the program that she referred us to, we decided that it just didn't seem to be the right solution. After speaking to a dear friend that was very concerned about the treatment we were receiving, we made the decision to seek out another pediatrician. A month later, Pierce turned three. Having been identified as a child needing early intervention with speech therapy, he could now receive treatment in the public school system. Pierce started a special education pre-school program in the fall of 2001. After being there for a few months, his teacher shared some concerns about Pierce's behavior. She saw some red flags that could indicate autism. He was tested by a school psychologist, but her conclusion was that he was not autistic. In his second year of pre-school, Pierce seemed to be more and more in his own world, so the decision was made to test him again. In the meantime, we took matters into our own hands and had an appointment made at Vanderbilt's Child Development clinic. Both the school system and Vanderbilt came to the same conclusion in the spring of 2003: Pierce was autistic. Based on that decision and the fact that he was still so far behind his peers, we held Pierce back for one more year of pre-school. This time, he would be at a school with a blended pre-K program. This class had a few special needs kids mixed in with the average students. Pierce was given an educational aide. She kept him on task, and Pierce was able to hang with the "normal" kids. With that extra year of pre-school, Pierce was prepared for a mainstream kindergarten classroom. He was once again assigned an educational aide that stayed by his side all day, every day. I was so worried that he would be teased because he was different, but his classmates absolutely loved him. His kindergarten teacher told me great stories about how understanding and patient the other kids were with Pierce. He definitely had struggles, but we were confident that he would thrive in this setting as opposed to a full-time special education classroom.

This is a rather condensed version of how our journey into the world of autism began. It's not the path that I would have chosen, and I sometimes wish things had turned out differently. My favorite Bible verse is Romans 8:28--"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." I can already see good things happening because of what we have endured (details are forthcoming in a later post). In my next post, I'll give a summary of how Pierce is doing today.

April Is Autism Awareness Month

The following information was copied from Autismspeaks.org:

Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). Autism affects the way a child perceives the world and makes communication and social interaction difficult. Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

This month, I would like to tell you more about our son, Pierce, and our experiences with raising an autistic child. I wanted to start this series by making you more aware of autistic children all around you. There are a lot of misunderstandings about this disorder. Maybe when you hear the word "autism", the first thing you think about is the movie "Rain Man". Let me tell you that not all autistic people are savants, and not all savants are autistic. Pierce does have an obsession with computers, but I have yet to see him display computer skills that would make him a savant. Some people hear "autism" and think "retarded". While some people with autism are mentally retarded, some are of average intelligence. Pierce has an IQ in the normal range. It's not necessary to speak to an autistic person as if they were five years old. They also aren't deaf, so there's no need to shout at them. When you want to communicate with an autistic person, you just need to make sure you have their undivided attention. Eye contact is very difficult for most people with autism, so don't feel offended if they won't look at you while you're speaking. I'm telling you these things, because I feel like Pierce and others like him are so misunderstood.

Too many times, autistic kids are considered rude or bratty. I had a confrontation with a mom on the playground last summer that felt this way about Pierce. She was sitting on the steps for the slide, and Pierce wanted to get by. Communicating with other people is something he just doesn't understand. To him, there was a slide and a person blocking the steps leading to it. He pushed his way past her without saying anything. This mom began yelling at him and then yelling for me. When she found me, she told me how rude my son had just been to her. I calmly (let me tell you, remaining calm took every ounce of strength in my body!) explained that Pierce was autistic and that he has trouble communicating in social situations. She then turned about 20 different shades of red and apologized profusely, but the damage was already done. I found Pierce and explained that when someone is in the way, he needs to say "Excuse me" if he wants to get by. I should have had him apologize to this lady, but I was so flustered, I instead gathered the kids and went home. I'm telling you this story to make you stop and think when you encounter a child that you think is rude or being a brat. Not that there aren't kids out there that could use some stronger parenting, but that isn't always the case. Maybe that kid doesn't need a beating. Maybe their parents aren't failing at their job. Perhaps that kid that's being rude honestly doesn't know how to communicate with you. Perhaps that kid that's throwing the mother of all tantrums in the grocery store is completely overwhelmed by the crowds, noise, and bright lighting, and he just wants to get away from it all. The mom or dad that is dealing with this child desperately needs your look of empathy not disdain. If you don't understand the ways that autism affects a person, I encourage you to do some research. Autism Speaks has a website with lots of useful information. As autism becomes more prevalent in our society, you will encounter more and more kids like my son. Please learn how to interact with them, and stop criticizing them and their parents. We are doing the best we can.

Many people around us are very understanding. In the weeks to come, I want to share some of our positive experiences. I hope that by sharing this part of my life I can help you reach out to people like Pierce.