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.

How's About Cookin' Somethin' Up With Me?

Most people are convinced that they can't do cooking in bulk, because they don't own a separate, full-size freezer. Au contraire, mon frere! I've managed to store 30 meals at once in my side-by-side fridge/freezer for a few years now. You may have to sacrifice your ice cream and frozen waffles for a couple of weeks, but who needs that stuff, anyway? Okay, okay; those of you that believe ice cream is a food group can put down the bricks and stop yelling at me now! Recently, we acquired a shiny, new stainless steel fridge with the freezer drawers on the bottom (LOVE it!). Since the old fridge still (mostly) works, we decided to keep it and move it into the closet with our washer and dryer. I now use the freezer in the old unit to hold all of my frozen meals. Anywho, fitting all of your meals into your freezer depends upon how you package them. For the first year or so, I used gallon-sized freezer bags. Soups, stews, and sauces can be laid flat to freeze and then stacked on top of one another or stood on end like books on a shelf. The thing that takes up the most room is casseroles, as those have to be frozen in a dish and then taken out and wrapped in foil. A couple of years ago, I purchased a vacuum sealer. Sure, the bags are more expensive, BUT they can be washed and reused! It's been a great investment. If you still aren't convinced that you can store a month's worth of meals in your freezer, try starting with 2 weeks' worth. You'll figure out what works for you with a little practice. The recipe I have for you today is what us southerners call my "funeral dish". This is the one that you throw together at the last minute to take to a sick friend, new mom, or those that have lost a loved one. It's probably my favorite casserole, because it's one that my picky children will eat!

Nana's Chicken Casserole

1 lb. chicken 1 can cream of chicken soup

1 qt. chicken stock 1 can cream of mushroom soup

1 stick butter 1 16 oz. bag of Pepperidge Farms

cornbread dressing

Boil your chicken in the chicken stock, adding water to cover chicken if necessary. Save enough broth to fill your two soup cans; shred chicken and set aside. In a dutch oven, melt butter, then add cream of chicken soup. Fill the soup can with broth and add. Add the bag of dressing and mix until moistened. In a separate bowl, combine cream of mushroom soup with one soup can of chicken broth. Mix with a whisk to remove lumps. Spray a 9x13 dish with cooking spray. Make a layer with half of the dressing mixture. Top this with all of the shredded chicken. Pour half of the mushroom soup mixture over the top. Top with the remaining dressing and then soup. Bake at 375 degrees for 35-45 minutes. NOTE: This will give you about 10 servings, so when I fix this for my family, I'm able to get 2 meals out of it. Instead of using a 9x13 dish, I use 2 8x8 dishes. I line these with foil and coat with cooking spray. I assemble the casseroles then put them in the freezer. Once they are frozen, I can lift them out of the dishes with the foil. You can either wrap them in a couple of layers of foil or place them in gallon-sized freezer bags. I prefer to vacuum seal them with my Foodsaver. On the day you wish to serve this, thaw the casserole in the 8x8 dish and then cook for 30 minutes. It can be cooked frozen; I cover it with foil and cook for about 1 hour, removing the foil for the last 15 minutes. I usually serve it with a vegetable side.

I'm Still Standin'

Somehow, last week got away from me before I was able to make a new entry to the blog. For those of you waiting with breathless anticipation for the next installment of the church saga, I would ask for your patience. You see, the next stage of grief I need to talk about is Depression. I'm having a difficult time putting my thoughts into words. Also, I'm part of a Sweet Adelines chorus, and we're going to Chattanooga this weekend for our regional competition (my first time on the contest stage, BTW!). I'm afraid that revisiting all of the emotions from the past will crush the positive, winning attitude I'm trying to maintain right now. So, friends, stay tuned. I WILL keep writing the story, and it WILL have a happy ending! My next blog post will be a continuation of my series on cooking and freezing. For the month of April, in honor of Autism Awareness Month, I will be doing a series about our experiences raising an autistic son.

I have been touched by all of the encouragement I've received from so many of you. I'm honored that you would take a minute or two out of your day to read the out-pouring of my heart and soul. Thank you again for your support.

Feelings, Nothing More Than Feelings

I've described for you the body of believers that I was once a part of. I've also given you an idea how difficult it is for me to tolerate change. I think now I can try to put into words just what I've been feeling since the summer of 2008. I don't know if I can accomplish this in one post, because I've experienced such a variety of emotions. I'm learning that my honesty is going to offend someone out there, and the only way I can prevent that from happening is to remain silent. Since I intend to continue blogging, I'll just have to apologize up front for any hurt feelings my blog may bring you. Please understand that I'm trying my hardest not to be critical of certain people or churches and that my thoughts are not complete. God is not finished with me and my journey towards acceptance.

I'm familiar with the stages of grief, as I have been through all of them since the day we learned that our beautiful, first-born child was autistic. I will most likely go through some of them again as Pierce makes his journey to adulthood. It is debatable just how many stages there actually are. I thought there were only five, but it has recently been discovered that there may be as many as seven. Since the summer of 2008, I feel like I've visited most of these stages of grief again as I've tried to process the changes in our church community. That summer, an announcement was made that change was coming to Antioch Church Of Christ. Some people were accepting of this change, but some were not. The stage of grief that I went through first was Denial. I thought that everyone's emotions would settle down eventually, and we could go on worshiping together as we always had. We loved each other and we loved the Lord, so surely nothing could come between us. I even thought that if we discussed our differences, we could find resolution and no one would feel compelled to leave. Alas, every Sunday our class got smaller and smaller as dear friends decided it was time to find another place to worship. I began to feel as if the life was being sucked out of our church, but I clung to the hope that we would see those "glory days" return. After all, we still had many friends that remained, and Antioch was the only church our children had ever known. Once so many of our friends were gone, it became blatantly clear to us that there were things that our family needed that could not be provided at Antioch anymore. We had chosen not to dwell on those things before, because we loved our church family so much and couldn't stand the thought of leaving them. Finally, we decided that the time to move on had arrived for us as well. Our last Sunday at Antioch Church Of Christ was Easter 2009.

I thought for a little while that I would move pretty easily to the Acceptance stage. The new church we were visiting was vastly different from our former home, and I appreciated some of the newness. The children's ministry was outstanding, the worship was joyful, and while the church was huge, the bible class we were attending was small and somewhat intimate. It helped that there were many familiar faces from Antioch to make us feel more at home. However, I soon discovered that the thing that stayed so constant here was how much they loved changing things up. Tim and the kids fell in love with this new church immediately, but I entered into the next stage of grief: Anger. I had left everything that was familiar and comforting to me. Now, bible classes were constantly changing so that I felt I'd never get to know anyone. We were always learning some new praise music instead of singing the old hymns that I so loved and had grown up with. Everyone I knew seemed to be happily moving on, while I felt betrayed. Betrayed by my friends and my church. Why did a few decisions have to destroy the church I loved so much? How could my closest, dearest friends just abandon me and start over some place new? I resented this new church we were attending with a passion. I refused to sing these new praise songs. One Sunday, I felt the tears coming, and I had to hurry out to the ladies room where I sobbed in one of the stalls. I didn't want to start over again. I didn't want to make new friends. I just wanted everyone to return to Antioch; I wanted to go back in time a couple of years.

Whew! I think I need to stop here for now. This is a pretty emotionally exhausting process. Maybe I should take a friend's advice and just write about sunshine, rainbows and unicorns.