Say What, Now?

So, I had a doctor appointment this morning. Because it was a new doctor for me, they asked me a lot of different questions about my medical history and that of my family. None of it was surprising to me. That is, until they asked if anyone in my family had any birth defects. I thought about it for a moment and said I couldn't think of any. The nurse then began to name a long list of possible conditions that would belong in this category.

Cystic Fibrosis...Sickle Cell...Down Syndrome...Cerebral Palsy...Spina Bifida...Autism...

Back. The. Truck. Up.

Autism? As a birth defect? Are you serious? This completely threw me for a loop. I stammered a bit. Well, yes, there is autism in our family. But never in a million years would I have thought of it as a birth defect! Which is exactly what I told the nurse. It was an awkward moment, and she tried to offer an explanation, but I stopped her. I told her it was ok, I just don't think of it that way. Frankly, any explanation she would have tried to give me would have only made it worse.

My son is not defective. He is not damaged. He is not flawed. He is not less-than-whole. He is uncommon. And the nature of his uncommonness presents challenges to him and to those who interact with him. But just because we don't fully understand autism doesn't mean that it is a defect! Who knows, perhaps it is an evolution! Perhaps, as my pastor suggested just a few days ago, it is a glimpse into the wonder of God's creation. He proposed that autism gives us a peak into the vastness of the capacity of the human mind as it was originally created, before sin entered the world and fouled up all manor of things.

It is our nature to want to categorize things. We want everything to fit into neat little patterns and hierarchies. When everything fits into its proper pigeon hole we feel that we understand where we stand. We feel that we are in control. But this is an illusion. We can't control life. We can't contain misfortune. We can't bottle difficulty. And in trying to do so, all we manage to do is build walls between people. We tell our children there is an "us" and a "them." Anyone who is not like me is "other." Anyone who doesn't do things like I do is "defective."

Well, let me just set the record straight. My son is not defective. He is not other. He is not wrong. He just is. He doesn't need to be fixed. He needs to be loved and understood and supported. He needs to be valued, encouraged, and protected.

Someone Who "Gets It"

I got a phone call today from someone very dear to me. I have known this woman since we were children. We get to see each other once, maybe twice a year. She has a special needs child too. Her child's condition and needs are different from my son's, but as most of you know, there are certain aspects that are common to all parents of special needs kids.

There wasn't any one particular point to her call. She began by asking me about Boo's recent difficulties with "the itches." She said that she had described the situation to her child's therapist and asked for any insight they may have. And though the therapist hadn't offered anything concrete, just the fact that she had thought to ask for our sake moved me deeply. We talked at length about the various things we face and deal with because of the needs our children have. We talked about doctors, coworkers, friends, and family members. We talked about how we can be so grossly misunderstood as mothers, and how our children's needs can be misunderstood also. When we decline invitations to restaraunts, bowling alleys, crowded places and outdoor events because of our children, we are not being selfish, overly protective, or attention seeking. We know our children, and we know their limits. We know what sort of things can trigger problems for them, and we will remove them from those things before the problem makes itself evident to others. Just because you can't tell what the reason for our actions is, doesn't mean we don't have one.

We also talked about some of the comments and questions we receive from others who, for all that they are well meaning, are nonetheless ignorant. People who think they know more about our child's needs than we do, or who compare aspects of our children to themselves or to their own typically developing children. She told me of some of these comments she has recently dealt with. I told her that what sucks for me is that people have such good intentions. It sucks because when they make comments that are rude, ignorant, insensitive, or just plain wrong, I feel like getting all up in thier face and giving them a piece of my mind followed by a good sqeeze around the neck...but I can't...because they mean well.

But what really hit home for me during this phone call was that she said the reason for her call was not to discuss any particular person, issue or incident, but rather she just wanted to talk with "someone who gets it." Boy oh boy do I ever identify with that feeling! There are a great many people in my life and Boo's who love us, who know him and handle him well, who have educated themselves and who have walked this journey by my side from day one. And I am forever thankful to God that these people are in my life and his. But they don't get it. Not really. They try. They want to. They come really, really close. But the fact of the matter is, they can't get it. He's not their child. They can't get it any more than a person who has been blind from birth can really understand color, or someone who has been deaf from birth can comprehend music. It's something that you have to live, to experience, in order to really, truly, GET IT.

This does not mean that there isn't value in awareness. We still need to work to help the general public understand. With education comes acceptace, kindness, and empathy. With awareness comes a world in which our children have the space to just be who they are. But people who don't live it will never truly get it. And that is why we need each other. That is why community is so important. If you are new to this journey, I urge you to build a support system within the community. Join a support group, go to an online forum, build a facebook family, whatever it takes to create a bond with people who get it. Because one day you will need to make that phone call. And another day you will receive that call. (or email...or private message...) And in both cases, you will be so very very thankful that you have each other to whom you can reach out. To paraphrase Woody from Toy Story: "Special Needs Parenting Buddy...if you don't have one, GET ONE!"

I Have No Idea What to Title This Post!

I cried in Walmart today.

I've seen other posts that start with this same sentence. In fact, a google search of that phrase netted 33,800,000 results! I suppose it's in part because we all seem to find ourselves in walmart stores more frequently than we imagine. It's also because Walmart is such a cultural icon, such a slice of life, a cross-section if you will, of America. You see everything at Walmart. In fact, Boo got his first tooth at Walmart. (At least, that is where I saw it for the first time.) So it should not have surprised me today when I made a connection with my cashier. But it did.

I was feeling annoyed by the fact that only 3 register lanes were open besides the "speedy checkouts." I chose the shortest line, and was pleased to find that the cashier seemed to be quick and pleasant. She was chatting away with the customer in front of me. She asked the customer "where did you find this shirt?" and then spoke at length about her mother, her stepmother, her mother-in-law, what she wanted to get them for Mother's Day, what she'd gotten them for Mother's Day in the past. I noticed that the customer seemed to take no interest in the conversation, and that this did not slow the cashier down in the least. I felt a moment, just a moment, of frustration. I was in a hurry, and here I'd chosen the line with the chatty cashier. But as she finished up with the other customer and I placed my items on the belt, I saw that she wore a button on her name tag. It was a small thing. A simple thing. It was just a black circle with white letters which read "Respect Others."

It stabbed my conscience. I realised my mistake instantly. I silently chastised myself. I reminded myself that this is precisely what I imagine Boo looking like in adulthood. (Well, maybe not precisely, as I imagine him a man) I think it likely that he will continue to have trouble knowing when others are engaged in conversation with him, and when they are politely uninterested. I imagine him talking incessantly all the time. These are both big challenges for him already. I thought about how I hope that others will respond to him when he is an adult. I thought of how it would pierce my heart to know that random strangers would feel annoyed by Boo simply being himself. I resolved that this woman deserved and would receive my utmost kindness and respect.

As I stepped forward in line she offered me the bubbliest of greetings. I smiled genuinely, glad to be checked out by someone with a positive attitude. We each asked how the other's day was going. She told me that her only complaint was a bout with writer's block. Aha! A fellow writer! A comrade! I asked her what she writes. She offered a lengthy description of the eclectic nature of the genres of her work. I noticed that she wore a necklace with two charms on it. They were both awareness ribbons, one green and one multi-colored puzzle pieces. Now, you can say what you will about the puzzle piece as a symbol of autism, (and I'll tell you my feelings on that matter some other time) but when I saw that necklace, I knew I had met a kindred spirit.

We continued to chat about her writing, and in the course of conversation, she said confidently "I have Aspergers" and proceeded to try to explain to me what that means. I smiled the biggest smile I could muster and told her, "I'm familiar. I have a son with PDD-NOS." Then she smiled a big smile. She continued with her explanation of the challenges that her Aspergers gives her as it relates to her writing. I told her that I understood, and mentioned that I have similar difficulties with my writing. I told her that I write a blog about parenting autism, and that I read several others as well. She was very excited about that, and told me that she was diagnosed at age 5 but only recently came to understand just what the diagnosis really means. She said that she would be interested in reading about it from my perspective as a parent.

By that time, I was finished checking out and it was time for her to help the next customer. I hastily wrote down my facebook address and my blog address for her and we said our goodbyes. As I pushed my cart toward the door, I choked back tears. I know the numbers. I preach the numbers. I'm the first girl to tell you that autistic people are everywhere. That they are already in your life, whether you know it or not. That you meet them in church, at restaurants, in grocery stores, and in schools. Yet when it happens, when I find someone that I really connect with, someone who speaks that esoteric language, someone who gets it...it pulls at my heart. I feel blessed to be reminded of how not alone we really are. I love finding comrades in my every day life.

So to you, Walmart Cashier Friend, if you have made your way to this blog, I want to say welcome. I want to say thank you. Thank you for being so open about your diagnosis. So willing to tell a complete stranger "I have Aspergers" as if it were the most normal thing in the world...because it is. Thank you for being a shining light, for saying, yep, I'm the face of one in 88, this is what it looks like, I'm just like you. Thanks for being your awesome self. And the next time Boo and I are in Walmart, I look forward to finding your line, no matter how long the wait, and finding out how that book you're writing  is coming along.

Me Times One Thousand

We are all autistic.

Bear with me, I can explain.

Sometimes I have this feeling that Autism is just the far end of the pendulum that is humanity. That "the spectrum" encompasses us all. We all have little parts of this and that. A little obsession, a little compulsion, a little ADHD, a little paranoia, all of it. And people with these diagnoses, these...labels, they just have it in spades. Whatever "it" they may have. I have many of the same "quirks" as Boo, just not to the same extreme. I have often said that Boo is me, times one thousand. Consider the following list of my own idiosyncrasies, and see if any of them feel familiar to you autism moms and dads:

1. I can't stand it when the TV is too loud.

Especially when someone is trying to talk to me. I find it nearly impossible to filter out the sound of the TV amid conversation. Sometimes when my husband is watching TV and my son is in the next room playing games or watching videos on the computer, I can't take it. I have to go down the hall to my room.

2. Everything has to be done my way.

This one is tough. Certain things just have to be done the way I do them. If I open the washing machine and find that someone has washed jeans and shirts together it irks me. If you wash the cups or the silverware before the plates, I can't watch. If someone else is behind the wheel and they take a different route than I would, I feel a little twitchy.

3. Some foods are unbearable because of the texture.
Tapioca. Lima beans. Water chestnuts. Peas. Cooked spinach. Enough said.

4. I hate shoes and socks.
The minute I am home, or sometimes even in the car on the way home, they are OFF. They annoy me all day. I fidget with them. I love summer because I love flip flops. You slide them on, you kick them off. Easy peasy. And a wrinkle in the sock? Or a bunched up tongue of a tennis shoe? Fuggetaboutit!

5. Clothing issues.
Shirts must be very loose. Pants must be tight. (though the latter rule has been greatly relaxed since my body image issues arose regarding my weight) My mother and I went round and round about it as a child/teenager. I wore my jeans skin tight, not for any sort of fashion reason but because I couldn't stand the feeling of them otherwise. Tags almost always get cut out. And I have a few shirts that I love because they look so awesome, but I never wear them because the fabric feels odd, or the stitching irritates me.

6. It's hard to function in an unfamiliar situation/circumstance/environment.
This has always been a big one for me, and I have always worked very hard to hide it. In fact, this may be the first time I've ever admitted it to anyone but myself. I find it hard to proceed if I can't reasonably predict the outcome. Once as a child I nearly had an anxiety attack when my mother asked me to call the library and ask for a resource librarian to help me find some information I needed. I was somewhere between 12 and 14 at the time. I was terrified because I didn't know what to expect. I grilled my mom, what should I say? Then what will they say back? What happens next? I wanted a script to follow. On the first day of middle school I refused to get out of the car. I was in a state of panic. I didn't know what was going to happen when I walked in the door. I wasn't familiar with the layout of the school, I didn't know where to go, or how to find out. My mom offered to take me in, but my fear of looking uncool by walking in with my mom was paramount. But I froze. I would not get out of the car. And I couldn't find any words to explain to my mom WHY I felt so incapacitated. She eventually had to leave the driveway and allow other cars behind her to go through and drop off their kids, then go around and drive through again. We repeated this scene probably half a dozen times before a friend emerged from the building who was two years older than me and I clung to her like a life-raft. Mom and I have often joked that if not for that friend, we might still be driving in circles through that school driveway!

7. Sensory peculiarities
I hate the feeling of water in my face. It took me a long time to learn to tolerate flip flops with that thing in between the toes. As a child, I was compelled to pick every speck of sock fuzz from between all my toes and could not sleep till my feet were thoroughly inspected. I count my footsteps. As a child I had to ensure an even number of steps on each type of surface, lest the right foot step on the concrete more times than the left before entering the store, etc. Foods on my plate must not touch each other, and should be eaten one at a time. I don't take a bite of meat, a bite of potatoes, a bite of veggies. I eat all the veggies, then all the potatoes, then all the meat. Unless of course it's a food that must be mixed (goulosh and corn, roast and potatoes and carrots, chicken noodles and mashed potatoes) and then I take time to ensure it is thoroughly mixed and that each bite will be consistently proportioned.

None of these things are so far out of the ordinary. But if you take them and multiply them in intensity and scope to the point that they interfere with the ability to function, you get Boo. He is me times one thousand. And I have seen it in everyone. My mom's skin will crawl if she puts an odd number of M&M's in her mouth, or if she sees someone rub their eyebrows the wrong way. My dad sometimes seems to shut down in a crowd and organizes his belongings with Monk-like precision. My husband begins his stories with detailed descriptions of time/place/circumstance that are irrelevant to the story, but he can't seem to get his point across without the unnecessary preamble. That's what I mean when I say we are all autistic. I think we all have things we think of as "quirks" that are kind of the seeds of the symptoms we see in people who are classified as being "on the spectrum." For whatever reason, whatever cause, some people's seeds have germinated and grown to the point that they get in the way of life. But I think if we all recognize the seeds within ourselves and really examine them, we can begin to grasp the reality of autism. Think about your own small obsessions, compulsions, peculiarities, and quirks. Imagine them multiplied by one thousand, so inescapable that they take over your life on occasion, when you are overwhelmed, tired, hungry, or trying to navigate something unknown. Then you can approach people with autism, their parents, caregivers and teachers with the empathy and respect that all humans need.

Thinking and Being

I spend a lot of time reading about autism. I read blogs, articles, facebook pages, you name it. Sometimes it irritates my family when they see the housework going undone and me sitting with my laptop. And I can understand that feeling. Sometimes I even get irritated with myself when I sit down to read one thing right quick, and a dozen links later I realize that I have let several hours get away from me. But there is a reason for it. Every once in a while as I am reading, there is a spark, a click, something snaps into place and I see things differently. I put one more piece of the puzzle into place, and it helps. It helps me, it helps the world, and it helps Boo.

Yesterday I found myself reading this blog post written by Rachel Cohen-Rottenberg, a writer who has autism and who wasn't diagnosed till she was 50. The point of the post was about the fact that people with disabilities who have the ability to overcome them and "pass" for a period of time, become expected to be "normal" all the time, or are believed to be "making up" the disability in the first place. It was both moving and fascinating for me. But in the midst of it, I read a line that stopped me in my tracks. In explaining the amount of energy and concentration required for her to "pass" as a neuro-typical person, she said, "I sprinted to keep up with rapid-fire conversations, despite my auditory delays, my inability to use nonverbals, and my need to translate all of the words flowing like an endless caption in my head to speech."

I hit me upside my head like a 2x4. I thought about Boo's speech patterns. I thought about the way that he uses 57 words to explain or describe something when 3 would do. The phrase "all of the words flowing like an endless caption in my head" hit a nerve. I remembered the descriptions I'd read about the way in which many people with autism "think in pictures." I considered that while my thoughts are language-based, showing up in my head as words, Boo's thoughts often seem to be conceptual or associative in nature. Something he has to translate, much as one might translate sign language into spoken words. You know how they say a picture is worth a thousand words? Imagine thinking in pictures and being expected to translate those thoughts into as few words as possible. I thought about the way that he gets so frustrated when he gets interrupted or when the words don't come out just right and it causes him to go back to the beginning and start all over. I thought about how frustrating it is for me to listen to it day after day. How often I attempt to somehow get him to abbreviate the soliloquy. I realized that I have been doing exactly what this woman was describing; forcing him to "pass." To behave as though he doesn't have autism. To appear as though his brain works like mine.

For the first time I realized the weight that is placed on my little boy's shoulders. I considered that what I have been doing with him for the past 14 months, though it comes from a heart of love and a desire for his long-term well being, was adding to that weight. I have been trying to "fix" him, to a degree, without realizing it. Though I understand on an intellectual level that autism can't be cured or fixed, that his brain is wired in a different and unique way that is never going to be altered...

My son is an amazing person. He is full of sweetness, tenderness, love, compassion, joy, laughter, curiosity, and intelligence. He has the biggest heart of anyone I have ever known. He inspires me daily. But the struggles he deals with also scare me. I fear for him because he is so tender, and because he so deeply craves relationships with others, just as we all do. I fear for him because he is different and kids are cruel. When I see his more difficult "symptoms" rear their ugly heads, I don't see today...I see tomorrow, next year, five years from now. I see him sitting alone at a lunch table. I see him chosen last when teams are picked in P.E. class. I see him listening to his friends on Monday talking about the fun they had over the weekend while he sat home alone uninvited. And when I try to teach him to behave more "normally" I am trying to spare him that future pain. To teach him to "pass." But in trying to spare him pain tomorrow, I am causing him pain today.

I remember how I worried so much last year when Boo first began attending preschool. That first year he went two days a week, just three hours at a time. And he excelled. He soared! He appeared so "typical" that his teacher seemed confused by the IEP and scoffed when I started talking about having him diagnosed. But what no one else saw was how he completely fell apart when he would come home from school. Even then I surmised that it was taking so much out of him, that he was trying so hard to fit in, that he used up all of his emotional reserves to do it. And it broke my heart because life shouldn't be so hard for such a little guy. He should just be able to be himself and that should be good enough for the world. They should recognize his awesomeness just the way he is.

I have been thinking about this all day today. Considering and stewing. And what I have determined is this: My job as Boo's mother is not to help him fit into the world. My job is to help him capitalize on his strengths and maximize his abilities. And my job is also to help the world accept him for who he is. He shouldn't have to pretend to be what he isn't. And that is a part of what this blog is all about. I have been learning so much this past year. I have learned from others who have been there and done that for much longer than I have. April is Autism Awareness month and I've contemplated what that means to me. I've thought of the many people who have become my friends even though we've never met or spoken. People who have educated, informed, inspired, cheered, and enlightened me. The Autism Community is an amazing thing. I still feel like an outsider often times, like someone standing on the outskirts and feeling my way around. Most of the time I have no idea what I'm doing and I go on instinct. But there are people out there who have thrown me virtual life-lines. I want to introduce you to a few of them. Please take the time to visit Mom-Not Otherwise Specified, Diary of a Mom, Running to be Still, Try Defying Gravity, and Stimeyland. This is just a drop in the bucket of the blogs and resources I have learned from, but it's a good jumping off point. The great thing is that you can pick one and then start following links and learn so much more than you ever dreamed there was to know about Autism and the people who live with it!

My goal is to help to create a world where Boo doesn't have to work so ridiculously hard just to be Boo. If you haven't been personally touched by Autism, you should open your eyes. Because I can promise you there is someone in your life who is living with it. A relative, a friend, someone at work, someone at church, the person who rings up your groceries, someone in your child's class at school, the person on the next treadmill at the gym, or the mother you passed by while you were shopping. Someone whom you encounter is touched by Autism. And I want you to begin to learn what that means. What it looks like, what it feels like. I want you to be equipped to be a friend, a teacher, a helper in whatever capacity you can. And I want you to raise your children to be compassionate and understanding and accepting. I want you to help me create a world in which Boo can just be Boo, and that will be enough. Won't you join me?

Being Aware

In the past I have always sort of inwardly groaned about "awareness" campaigns of various sorts. Breast Cancer awareness, AIDS awareness, and the like. I always thought, really? Is there anyone out there who isn't aware of AIDS? Do we really have to wear ribbons and fill the news with sad stories on a particular month or day in order for people to be aware of this disease?....That was then.

Today was Palm Sunday. The day we celebrate the triumphal entry of Jesus into Jerusalem. The beginning of Holy Week. When I picked Boo up from his Sunday School class his teacher Mrs. W told me that the children would begin the church service with a palm leaf processional and the parents were invited to join as well. She said they had not practiced this, but had told the children of the plan. As we walked down the hall I showed Boo the stack of palm leaves and asked if he knew what they were and if he knew what they would be doing with them. He had no idea and I was certain he had not been listening in the part of the morning when the plan was introduced. So I made a quick explanation and he seemed very excited by it.

We went to the fellowship time, or "the eating place" as Boo calls it, and had our snacks. Then he went to the nursery room to play with the other kids till it was time for church to begin. When I told him that they were handing out palm leaves he was excited. But then everyone lined up in the back of the church to wait for our processional to begin. This was a process that took several minutes longer than the length of Boo's patience. By the time we were ready to walk up the aisle he was ready to loose it. We made it through just fine and back to our pew without incident. But it didn't take long for me to see that this unexpected change in the church routine had taken its toll on Boo's coping skills. Before long I had a sobbing boy who was nearing meltdown level. I picked him up and carried him out of the sanctuary, down the hall, and sat with him in an armchair and just let him cry it out and tell me how sad he was. It took several minutes to calm him. He was also upset that I had forgotten to bring his backpack with his snacks in it. I decided to take him to the kitchen and allow him a couple extra cookies. I am still worried that this may have set a precedent that will be very difficult to break, but I felt it would be most compassionate to allow him some leeway since we were out of routine and I know how hard that is for him.

We got through the rest of the service without incident and left with a happy boy. He had been given a sticker with a red heart and a cross on it. He likes stickers and likes to put them on his shirt, but after only a minute or two they bother him and he usually removes them and gives them to me. So he took this sticker also and affixed it to the back of my hand. He told me that this is to show that I sinned but God still loves me. I wore it proudly all day!

After church began the countdown to the much anticipated event of the week: H's birthday party! Boo has been preparing for this for days, talking incessantly about Sunday at 1:00. Yesterday he excitedly helped me wrap the gift he had chosen, and carefully wrote out and signed the card, then taped the pinwheel and the card to the gift and placed it on the entryway table. He told everyone in church today, including Pastor, about the party. We arrived and Boo was thrilled to join his friends playing. There seemed to be children everywhere you looked. Classmates and cousins and siblings as far as the eye could see. It was blissful child chaos, running, yelling, laughing, and squealing with delight. Some of the parents dropped off their children and I was assured that it would be fine for me to do the same. I'm glad I opted to stay. I was concerned about Boo's tolerance to the level of noise and disorder. He was already a bit out of sorts after the morning's events. But he took it in stride, smiling joyfully. AND THEN....

Boo spied one of the holy grails of toys in H's room; a race track! It was the coolest thing ever. Four lanes, and something that seemed to be a sort of launching device. He carried it to the living room and asked me how to make it work. I told him that he would need to ask H because I was unfamiliar with the toy. Soon the kids had found four or five track pieces and the room was filled with preschoolers trying to assemble this track. It was the consummate example of too many chiefs. Everyone was working at odds with one another and the track was not coming together looking like anything a car would actually be able to race across. The sections were not level and it just wasn't going together correctly. Boo was becoming more and more distraught and I sensed that he was approaching his limit. He began wailing to the other kids "That's not right! It won't work! You can't do it like that!" I entered the fray trying to calm him, but to no avail. I only made things worse. The other kids were called away to eat lunch and Boo's meltdown escalated. I was on the floor with him trying to talk him down but he would hear none of it. He refused to allow me to even speak to him, throwing himself on the floor, kicking, flailing and screaming. I reasoned, cajoled, cooed, spoke sternly, tried to hold him (at my own peril), and finally told him that if he could not get under control we would have to go home. Several times I threatened to take him and leave and he did NOT want to go but he was unable to calm down. I finally picked him up and held him against me as best I could amid the kicking legs, arched back, and flailing arms. Meanwhile, the adults in the room, family members of the birthday boy whom I had never met, looked on in what appeared to be shock and maybe even horror, though my perception was admittedly altered by my own embarrassment. I walked Boo to the front door and someone kindly opened the door for me. Over my shoulder I said "I think we'll be back." I'm not even sure anyone could hear me.

Outside Boo continued to wail and scream that he did not want to leave the party. I told him that if he wanted to stay he would have to get control of himself. He finally sobbed that he just wanted to go home. I walked him to the car, my own tears welling up in my eyes. As I placed him in his seat I told him that we did not have to go home if he did not want to. He finally calmed down enough to realize that he would rather stay at the party. I told him he could only stay if he stopped throwing a fit. He was still crying, but under control, and he told me "it's just so HARD Mom!" We were finally able to rejoin the party inside. As we entered the front door I saw a couple adults disassembling and removing the race track. They glanced up at me and I read their expressions as condemnation for bad parenting, but I realize now that I was just projecting my own insecurities.

As we were going back in the house, I saw Boo's BFF pull up in the driveway. This thrilled my heart because Boo and Little Britches (as I call him) have such a unique and special bond that I rarely worry when they are together. LB seems to have a calming effect on Boo, and also seems to sense what he needs and intervene as needed. He and his mother, whom I have dubbed "The Boo Whisperer" are truly some of the best blessings God has brought to us. As The Boo Whisperer entered the room where I sat with the other adults, I announced to her that she had just missed one of Boo's epic fits. "Oh really," she asked. I explained that there was a race car track that wouldn't go together correctly and I said "and you know what that does to him!" She replied emphatically "oh yes, I do." What bothered me most about this exchange was that I was completely aware that I was in essence putting on a show for these other adults in the room. I wanted them to understand that my child was not simply a brat and that I was not simply a bad parent. I didn't use the "A" word because I don't want to constantly use his diagnosis to brand him or label him. I don't want him walking around with a blinking neon sign over his head that says "I'm different." And yet, at the same time, I want people not to judge. I want others not to think less of him when he reaches his breaking point and has outbursts, or when he behaves oddly, or when he speaks in a strange, repetitive, unnatural way. I don't want other kids to steer clear of him. I want the same things for him that every parent wants for every child. Understanding, love, and acceptance.

But in order for that to happen, the population at large needs to have an awareness not just of the fact that autism exists, but of what it is, what it looks like, and that the people who have it and who deal with it daily want and need the very same things that they do. At the party today the kids were playing house and one girl announced "I'm the mom!" A boy declared "I'm the dad!" And Boo stated matter-of-factly "I'm a four year-old kid." And in the end, that's exactly what he is. He's not an autistic kid. Not even a kid with autism. He's just a four year-old kid.

So we are joining with many of our friends around the world tomorrow in the effort to "light it up blue" for Autism Awareness. Our porch light will be blue. Our shirts will be blue. Even my fingernails will be blue. And I urge you to take some time to do something to raise your level of awareness. Go farther than just listening to the "experts" on TV. Contact someone you know who has a family member with an ASD diagnosis. Read some blogs by parents dealing with it. Get a real sense of the people behind the label. Let's turn awareness into action and understanding.