Boo's School

Pikachu looks on as Boo approaches the lane.

It's a long story. Long, difficult, and painful. And it's not mine to tell. If ever Boo decides to tell it, then I will support him. Until then, I will protect his privacy. So let's just say.....It's been a long hard road the last few weeks. It's been messy, scary, sad, confusing, and exhausting. And unfortunately, the struggle was not confined to home. It seeped into school. There were witnesses. 

These are the moments that tear at a mother's heart. I know how cruel kids can be. I remember school. I watch the news. But Boo's friends...the culture at Boo's school...it's different. Boo attends a small private christian school. Despite everything, there has never been a cruel word, a laugh, a joke, a sideways glance, that made him feel less than accepted and loved. Quite the opposite. Day after day I have entered the school with Boo and heard a chorus of happy voices welcoming him. I've walked down the hall past a doorway and heard excited murmurs after students saw me pass by, wondering whether he was back. I've watched at recess, as a friend made a point to sit next to Boo and chat with him when he didn't participate in the game others were playing. 

Most every day, Boo carries with him one of his plush stuffed toys. Characters from the Mario Brothers franchise or Pokemon, usually. The other students not only tolerate this unusual coping strategy, but they welcome it. They interact with the character, and with Boo "through" the character. The teachers allow Luigi or Bowser or Bunnelby to sit atop Boo's desk during class and to be carried through the halls. It's seamless, ordinary, normal.  Boo has a niche here. He belongs. He isn't like the rest. He doesn't talk sports. He isn't up on the latest dance craze or pop music favorite. But he is loved. He is included. He is missed when he isn't there. 

Today I attended a field trip with Boo and his entire school. We went bowling and then out for pizza. I watched his friends chat with him. I watched as he carefully placed his Pikachu just so, perched so that it could "watch" him bowl. I watched him dance free and silly and carefree to the music playing (much too loudly) in the alley. I watched him make Pikachu dance. I soaked it all in with a grateful heart. No one, from kindergartner to eighth grader, seemed to see anything about Boo that was less than they are. Different...but not less. These kids are defying the stereotypes. They are learning so much more than math, science, reading, and history. They are learning to live out the faith they profess. The love of Christ is truly in all that they do, and all that they are. And for that, I grow more thankful every passing day.

Won't You Be My Neighbor?

Yesterday I found out that our next door neighbors are moving. As in, they will be out this weekend. There are a few implications with this news:

1) Boo's neighbor kid friends will no longer be neighbors. I do not look forward to giving him this news. I fear he will be heartbroken.

2)The house next door will be available for rent. This always worries me. When we bought our home, the house next door was in the process of being foreclosed and then sold. When it was bought for use as a rental house, I cringed. You just never know what you're going to get when people rent. We have had a great run of really wonderful neighbors thus far, and I hope that continues. Anyone out there want to move in next door to Boo???

3)Finally, and this may be the most crucial point....the people who are getting ready to move planted a garden in their back yard. Some of the vining plants are growing up the fence along our property. The family has been busy and has pretty much been ignoring the garden. If they leave without cleaning out the vegetables from the garden, then those two huge cucumbers that are hanging on our side of the fence...those babies are MINE!

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.

Getting Our Groove Back

As you probably already know, we've had a rough go of it lately in the Boo family. Aside from the fact that I was at the end of my emotional rope, with no reserves left to help me cope with what was happening, as was Boo, I was totally flummoxed as to where it was all coming from. In the last few days I have learned a few things that have shed some light. You see, I already knew that dealing with the switch in routine from going to Mammo's house every day to staying home with Mommy every day was difficult. I also knew that at school they were practicing for the spring program, which was taxing for him as well. Not only was the program itself stressful, but adding the practice time to the already short school day meant that there was little time for play and that often the classwork had to stop before it was completed. Boo has always had an extremely hard time stopping something before it's finished. TV shows, games, craft projects, rambling run-on sentence filled soliloquies, whatever.

What I did not know, was that Boo was also being tested by the school psychologist from the early education center in preparation for his assessment for the spring IEP. A call from the psychologist Friday revealed that the type of testing done had required that the tester continue testing until Boo gave incorrect answers on a certain number of questions in a row. Boo. Hates. Being. Wrong! He really can't tolerate it. And the psychologist told me that it had been difficult on him, to the point that he was even trying to look at the notes that were being taken to see when a check mark or an x was written. Feeling like he has failed is one of the hardest things for Boo to tolerate. And it doesn't matter how much we encourage (and we do!), his perception is that he's done something terrible when he is wrong.

What I further did not know, was that there were some discipline issues going on at recess. There were a couple boys who had been incessantly playing chasing and tackling games. Boo finally revealed this to me on the way to school Friday morning. He told me that he really doesn't like it when they do that and it hurts him and makes him sad. I told him that he should tell the kids not to do that to him, and tell them that it makes him sad and angry. He told me "I can't!" I told him that he should go and tell the teacher when it happens and she will make them stop. He said he could not do that either. When I asked the teacher about it, she admitted that it has been an ongoing problem for some time and she's had little success getting it to stop. I told her of my conversation with Boo and she seemed puzzled. She said, "But he does those things. He tells me what happened, and when I tell him to tell the boys to stop, he does." So, what Boo meant by saying he couldn't tell the boys or the teacher wasn't that he couldn't physically do it. He meant that he was unsuccessful in doing so.

So here is this poor kid, trying to deal with a major change in his daily routine, being forced to continue questions and tasks that he knows he is failing at, having to stop his school work abruptly without finishing, receiving very little time to let loose and play, and what little playtime he does have is punctuated by being physically accosted by his friends and all his attempts to self-advocate are to no avail. No. Freaking. Wonder. he has had so many violent meltdowns lately. And not knowing what was happening, here I was giving him the hard line of "oh yes you will go to school today, that's not an option." He was unable to communicate to me that he didn't feel safe there!

Well, Friday he was able to spend the afternoon with Little Britches and The Boo Whisperer. I spent my day with my mom, did some shopping, and had lunch at a fabulous local sandwich shop complete with live jazz band. By the time I picked him up that night we were both emotionally recharged and ready to be together again. We came home and Boo baked cupcakes for his birthday party. Today, we had the most amazing party ever! So. Much. Fun! <pictures here> After Daddy gave him a bath, I was laying beside him in his bed, waiting for him to drift to dreamland, he rolled over, stuck his little finger at me and said "pinkie promise?" (A concept he just learned from the movie Despicable Me that he's been watching lately) I asked him "what are we promising?" His reply: "we love each other." I stuck out my finger and said "yes we do, buddy." He curled his tiny finger around mine. "Pinkie promise?" I answered emphatically, "Pinkie promise!"

Little Britches

“The glory of friendship is not the outstretched hand, not the kindly smile, nor the joy of companionship; it is the spiritual inspiration that comes to one when you discover that someone else believes in you and is willing to trust you with a friendship.”  ~Ralph Waldo Emerson

Monday we had a field trip with Boo's school. We went to a farm. When we arrived, the first question from Boo was to ask where was Little Britches. (This is the nickname I gave to Boo's friend when they were still quite small.) I walked behind these two little men, who trotted along hand in hand chatting with each other. I snapped a couple quick pictures and thought about how very blessed we are. All day I watched the interactions among the kids. And again I marveled at the fact that there seems to be something amazing between these two small boys.

It all started when they were still just babies. Boo's grandma and LB's great grandma lived next door to one another. They both babysat the boys. Being proud grandmas and friends, they decided they should get the babies together for a playdate. The first one took place when Boo was just 7 months old and LB was 11 months. The meetings continued and eventually the grandmas introduced the mommies to each other. Even from the beginning LB was a dream of a friend. Looking back I can see so many things that I didn't even notice at the time. Things that were "different" about Boo, and things that were special about this friendship. I remember watching a video of the boys playing with blocks when they were around 18 months old. LB carefully built a tower and Boo delighted in knocking it down. But instead of getting irritated or upset, LB calmly sorted through all the blocks in the set and handed Boo all of the cylinder shaped ones, which Boo was strangely fascinated with. On the night of the open house before they started preschool, Boo was displaying a lot of anxiety. Seeing LB's familiar face helped ground him. Partway into the evening, Boo suddenly became upset and demanded to leave. He said he needed to potty. (we were still working hard at potty training, and I was uncertain if he would actually be able to attend the school since potty training was a requirement.) Before I even had a chance to attempt to deal with the situation, LB stepped in and took Boo by the hand, saying come on, I'll show you where the bathroom is. I stood there stunned as Boo followed him into the public bathroom without reservation (he still had an abject terror of public bathrooms at that time) and they went in and took care of business and came back out. I thought I'd stepped into the twilight zone.

When the boys were around 2 I lost my job and LB's mom eventually asked me if I could babysit him a couple afternoons a week. It was like she asked me if I would mind winning the lottery. I adored LB and loved having him around. The boys continued to grow closer. Eventually, we were able to trade playdates at both houses. Boo especially loved this because of LB's amazing Thomas train set! And no, it wasn't all puppies and butterflies. The boys squabbled. Boo had meltdowns when LB put the "wrong" freight cars on the trains. And that was how I learned that LB's mom had a remarkable skill of her own. There is something about her personality, her demeanor, the way she speaks, that has such a calming effect on Boo that I have dubbed her The Boo Whisperer. He loves her dearly. Often after school when we are picking up our kids, Boo runs to excitedly to her instead of me.

The boys are now five (well, Boo will be five soon) and the bond between the two is remarkable. LB just seems to inherently "get it" in a way that even trained and educated adults often do not. He seems to intuitively know what Boo needs and steps in automatically to provide it. And it happens so seamlessly, so effortlessly, that I really think that it goes unnoticed by most people. When Boo feels anxious about the unknown, LB takes it upon himself to talk him through it and reassure him. LB provides a sort of touchstone for Boo. A feeling of familiarity and groundedness. When Boo is sad, LB seeks ways to help him feel better. When Boo isn't listening, LB leans in and gets his attention and brings his focus back where it needs to be. Little Britches always seeks to include Boo, is always quick to share with him and to make sure that he is a part of the group. He encourages Boo to try new things. He is quick to forgive when one of Boo's fits or unusual sensitivities spoils the fun. Those of you who follow this blog may remember the story of Family Night when Boo became overly upset by his inability to find any Easter eggs (looking for things generally not being one of his strong suits) and LB stepped in immediately and cheerfully offered to help, pointing out eggs to Boo instead of taking them for himself.

This special and unique friendship warms my heart and gives me hope. It is children like Little Britches who will make the world wonderful, accepting, and inclusive for children like Boo. In fact, when we made the decision to enroll Boo in a private parochial school 20 miles south of us, my biggest reservation about it was the fear of breaking up this friendship, of the boys loosing touch and growing apart. And that is still a risk. But something tells me that the kind of empathy that Little Britches possesses at the tender age of five can't just be a fluke. I'm certain he will continue to grow in love and respect for others, and that when the boys reunite in high school when Boo comes back to the public school system, even if they aren't close, Boo will still find an ally there to help him navigate the waters.

People like LB and The Boo Whisperer give me confidence in the future. They inspire me, and help me believe that some day far from now, when Boo is grown and I am no longer able to walk side by side with him through the wold, he will be successful. He will be social. He will be accepted, valued, and appreciated. These friends are blessings straight from God in my life and my son's. And what they mean to me is so deep and so profound that I could never put it into words, and I could never tell them face to face. The emotion is just too intense and personal. So this post is my thank you. It is my God Bless You. My I love and value you more than you will ever understand. And my praise to God for knowing we would need you, and placing you so unassumingly in our path.

Being Neighborly

There are so many different blog posts swimming around my head, vying for a place at the front of the line. It's almost to the point of being distracting. But I think we have a clear leader this evening, and it's not one I was prepared for.

Recently, a new family moved in to the house next door to ours. They have three children ages 6, 8 and 10. Boo has politely introduced himself to them and then quickly fallen head over heels for them all. As an added bonus, they have a huge trampoline in their back yard! He has been to play in their yard, and they in his. A couple weeks ago they came over and hung out for a few hours in our house and Boo did an amazing job of sharing his things and of cooperating with the way they play and going with the flow of what they wanted. I was truly in awe.

Ever since that day, he has been itching to join his new friends again. He keeps an eagle eye on their house and their driveway, and whenever he sees the car is there he thinks they need to be together. We have been on such a busy schedule lately that we haven't been able to play with them for a while. But today when we arrived home I really had no reason to say no. Sure enough, Boo spotted the car in the driveway and announced "P is home!" (their mother) He wanted to go over and jump on the trampoline, but I reminded him that it is impolite to invite yourself to someone else's home. So we agreed he would invite the kids to his house to play. I discussed with him the possibility that the other mom's answer might be no and the fact that it would be inappropriate to throw a fit if that was the case. He assured me that he understood and that he would be ok no matter what she said. We walked to the door together and he rang the bell, but no one answered. He fell instantly into despair. We walked back home, my arm around his shoulders, his chin on his chest, and him sobbing about how sad he was.

For a kid on the spectrum, Boo is blessed with an exceptional ability to understand and verbalize his own emotions. And I am constantly baffled by the oft-repeated litany of "symptoms" of autism which includes difficulties understanding and expressing emotion. If anything, Boo is an over-achiever in that department! He doesn't feel anything a little bit. There isn't slight happiness, a touch of sadness, or mild amusement. When Boo has an emotion, it is full-on, go-for-broke, no-holds-barred. Sometimes that is the most challenging thing for me as a parent. When he is inconsolable because we are temporarily out of the regular flavor of fruit smiles, or when he is doubled over with laughter over the sound of a word, it's easy to feel annoyed by the sheer ridiculousness of it. We call him our little drama king, because it sure seems like he is putting on an act. But I have to remind myself that he is not. He feels his emotions with an intensity I've never seen before, and he wears his heart on his sleeve. This is part of what terrifies me so much about him growing up and moving out into the world and away from the protective shelter of his immediate family.

Which brings us to tonight. After finding the neighbors not at home, Boo and I sat on our porch for a while crying and hugging, then transitioned into listening to the birds, then playing some t-ball. (incidentally, I noticed he is WAY overdue for a taller set. The ball on this one sits about waist level. WHEN did he get so tall?) Next thing you know, here come the neighbor kids riding up the street on their bikes. He ran to them excitedly and announced, "Hey, I invited you to my house!" Their mom was walking close behind them and agreed it was ok for them to play together. Then came the big question; at whose house shall we play? He announced he wanted to go to their house and P happily agreed. I exchanged phone numbers with her and asked her to give him at least a 10 minute warning before she needed him to leave in order to help him transition. The kids all trooped out to the trampoline, and I went to my back yard and feigned interest in my garden spot, pulling a few stray weeds and listening for the portents of an oncoming meltdown. I heard nothing but laughter. And then they all went inside the house. I was a WRECK! I couldn't hear him, couldn't see him, couldn't mediate, couldn't intervene, couldn't head off problems at the pass. In short, I couldn't stand it.

It's not as if this was the first time he's been away from me. He's had babysitters before, he goes to school, to Mammo's house, he has stayed with our Pastor's wife and with his Sunday School Superintendent for entire days. I wasn't even sure what it was that had me so tied up in knots. Why did this event feel so different? Why was I anxious about him being there? I trust P. I've had long conversations with her, and her children are sweet and well-behaved. The only thing I can put my finger on is this: I haven't told P about Boo's diagnosis. I've come close. I've eluded to it. I've referenced his therapy at school. But I walk a tightrope all the time between wanting people to "get" him, and wanting to protect his privacy. I don't want to hang his diagnosis around his neck like a sign. I don't want him to be labeled or placed in a box. But I sometimes feel like I want anyone who interacts with him to read some sort of terms-and-conditions statement, and to click "I agree" before they can continue. Because there are certain circumstances and situations that are just REALLY difficult for him to handle. And to the casual observer his resistance looks like defiance when it's not. In public he often looks like a good ol' fashioned spoiled brat. Even I can sometimes have a hard time distinguishing his typical four year old behavior from his autistic behavior.

I spent 45 solid minutes stewing and waiting and wondering. When I finally called to ask P to go ahead and give the 10 minute warning, she already had, and was down to 5. She was going down minute by minute, which is exactly what I had really wanted her to do in the first place, but thought it too demanding to ask. She told me that he had taken the warning in stride and didn't seem bothered. I said, "wait till you get to zero." Soon I stepped out the front door expecting to hear cries of resistance and to have to go retrieve Boo. Instead, I see him happily walking up the driveway hand-in-hand with P. HOLDING HANDS! This child vehemently refuses to hold hands in any other circumstance, but he was chatting pleasantly and P reported that they'd had a wonderful time, and he'd never given her a moment's trouble or argument. We said our goodnights and parted ways. Boo came back in the house as nonchalant as if this were any ordinary day. Which I realized, it was. And that itself was a victory.

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?

Family Night

Boo has been anticipating "family night" at school. The preschool does two of these a year, one at Halloween and one at Easter. The premise of tonight: bring your own eggs, the school provides the dye and takes care of the clean-up. Then all the kids have an Easter Egg hunt in the classroom/church. This event involves both the three year old and the four year old class plus siblings.

Boo was thrilled at the idea of dying eggs. He was happily helping Mammo boil them this morning as I left for work. When I arrived back at her house this evening to pick him up, instead of being met with the usual disappointment (he's NEVER ready to leave) he declared "It's TIME!" We arrived at the school and he darted up the stairs to the fellowship hall. He quickly surveyed the room and to no one's surprise, chose to sit next to Little Britches. As they dipped their eggs together side by side, Boo spontaneously announced "I love you LB." And LB replied "I love you too Boo." They made quick work of dying the eggs and were thrilled with the results. After the dying was done the kids grabbed their baskets and Mrs. K announced the rules of the hunt. She did a quick head count, pulled out her calculator, and told us that each child was allowed to pick up 11 eggs. And with that, 18 screaming munchkins with baskets streamed down the stairs followed by grinning parents with cameras.

The low-hanging fruit was plucked quickly. After a brief search of the first room, Boo had no eggs. He ran into the next room with a huge grin on his face and watched other kids grab the obvious eggs before he had the chance. He suddenly started moving toward despair, exclaiming that he couldn't find any. There was distress in his voice and I knew I'd better step in before the meltdown started. But before I had the chance, in stepped Little Britches. He was calm and reassuring. "Don't worry, Boo, I'll help you." LB already had five eggs in his basket. He walked around the building finding eggs and selfishly handing them over to Boo. After they each had five, they continued to work together to find more eggs. I was in awe once again of this sweet little boy and the instinctual way that he loves Boo and keeps him on an even keel. Our plan is for Boo to attend a private parochial school when he starts kindergarten this fall. My one major misgiving in this is the idea of separating Boo and LB. I only hope that our efforts at maintaining the friendship are successful, and that we find another friend at the new school as wonderful as LB has always been.