Boo's Menu

As most of you already know, self-restricted diet is a huge issue for Boo, as well as many other spectrum kiddos. He can be very hungry and begging for food, but everything we suggest gets shot down. One day, out of pure exasperation with listing the options for the hundredth time, I wrote down all the items that Boo is typically willing to eat that we have in the house. I handed it to him and told him he could choose any item from the list. He took a quick glance and chose a food. Just like that. I was blown away. Boo is so much better with visual communication than verbal, I guess this was just easier for him to process. Since then, I keep this list handy at all times. He has even learned to ask for it. It cracks me up to watch him peruse the list of foods and choose an item, often by pointing to it, as if ordering from a restaurant menu.

Boo, Moses, and the Gospel

Last night at bedtime Boo and I were reading bible stories. We are reading out of two different bible story books right now. One is very simplistic and one is closer to the original language of the bible. From the first, more advanced one we read part of the story of creation. When we got the the part about the seventh day, and how God made it holy, I stopped to check for understanding. He did not know what the word holy means. I explained that it means set apart, made different than the others. Then I asked him what was different about the seventh day. I got the blank stare. Then I rephrased the question.
"What did God do on the first six days?"
"He made all the things in the world."
"And what did he do on the seventh day?"
"He took a rest."
"So what is different about the seventh day that makes it holy?"
"God rested."

We moved on to the other story book where we picked up from our previous reading about Moses. We read about Moses growing up in the palace, then running away, then seeing the burning bush. When God spoke to Moses he told him to remove his shoes because the ground was holy ground. I paused again to check for understanding. Again, we discussed the meaning of the word holy. I asked him what was different about that particular ground where Moses was that made it holy. He thought and studied the picture. His response was "It was made of sand instead of sidewalk." I bit my lip, stifled my giggle, and continued.
"Well, that's one thing that's different. But what special thing happened in that place?"
"God talked to Moses."
"That's right!"

We also talked about how we would feel if God showed up and talked to us. Then we went on with the story. When Moses approached Pharaoh (In this book described as "the mean king") and told him that God said to let the Israelites go, it really bothered Boo that the king said no. He couldn't understand why the king would be mean to the Israelites, why he wouldn't listen to God. His tender heart shone through as he pointed to the picture in the book and traced his finger down from the top of the page onto the face of the angry looking Egyptian king, and he spoke the simplest, most sincere gospel message I think I have ever heard. "He needs God's love."

Boo's First Day of Kindergarten!

The night before Boo's big day, I was a nervous wreck. Ok, the whole day. Ok. Week. FINE....MONTH! Sheesh! Thankfully, I was the only one showing signs of anxiety. I packed up his lunchbox with a large variety of items, not knowing what he would be willing to eat come lunch time. I sent peanut butter, sandwich crackers, graham crackers, fruity cheerios, a granola bar, fruit snacks, a blueberry muffin, yogurt, and a Capri Sun. I set it in the fridge and went to bed...and tossed and turned.

The next morning, when it was time to wake him, he did not want to get out of bed. He informed me that he did not need school, and he would just sleep all day. This is the same kid who woke me up at 5:30 am just the day before! I tried everything I could think of to motivate him...finally I stumbled upon just the right thing. I reminded him that his backpack was filled with his supplies for school, and I told him that one of the pencils I had put in his pencil box had SPIDERMAN on it! I invited him to come with me and check out the pencil, and that was all it took. We looked at all his pencils, repacked his backpack, and put on his favorite Spiderman outfit. After that, it was all I could do to keep him in the house long enough to get my shoes on and grab my keys. He was on his way!

It was a thirty minute drive to his school. My stomach was churning. About halfway there, he suddenly announced "I don't want you there." I assured him that I wasn't planning to stay, just to walk him to his classroom and get him settled. He rebuffed me. "I know where my classroom is, Mom." So I just told him that I needed to talk with Mrs. W and he was satisfied. We arrived at the school and Boo marched right in the front door without even checking to see if I was with him.

Just inside the door sat a lovely lady, Mrs. M, whose sole responsibility at school is to greet each child as they enter, give them a hug and greet them with the heart-felt words "God loves you and so do I, have a great day." She has been doing this as a loving volunteer for many years. She is 90 years old, and the kindest soul. Boo seemed a little distrustful of her eagerness and turned down the offer of a hug. But when she told me that she offers them to parents also, I gladly accepted. I told her I really needed one that day. And I did!

Each year Mrs. W chooses a different theme for her classroom for the year. This year's theme is Whales: We Have a Loving, Everlasting Savior. There are whales everywhere! Beginning here, outside the classroom, and all over the place inside. It looks totally awesome. We entered the room and Boo began to wander around happily. He was checking everything out, just doing his own thing. When he saw the reading area with the big pile of pillows, he could not resist diving right in.

He gazed longingly out at the playground.

He and Mrs. W investigated how dark it is inside the bathroom if you close the door without turning on the light. (She was trying to tell him the importance of remembering to turn on the light switch outside the bathroom before entering, and he assured her that he could see in the dark because of his great eyesight. LOL)

I finally got him focused on the job at hand. Together, we found the desk with his name on it, and filled it with the school supplies from his backpack. When he first opened the top of the desk, his eyes widened and he exclaimed "This is my secret lab! This is where I keep all my things that control my robots!"

Once this was accomplished, there was no putting it off. It was time for me to go. I had to leave my baby in his kindergarten classroom for an entire day. I took a deep breath, gave him a kiss, and said goodbye. I walked to the door, looked back across the class, and choked back tears. There sat my Boo in his big kid chair at his big kid desk in his big kid school. I was SO NOT READY for this! But he was. It was clear he was ready. He barely took notice that I was leaving. I walked out into the hallway and found some other mothers and staff out there who chatted with me. I wanted to run out the door and let out the sobs that were pushing at my throat. Another mother of a child in Boo's class joined the conversation, and she asked me if I was still in the room when Boo made his announcement. Mental head slap...oh boy. I said I hadn't been, and asked what he said. She told me he had stood and informed the class that whales are actually called orcas, and that they are really a type of dolphin. Yep, not even five minutes into the first day and he was trying to lead the class. That is the Boo that I know and love!

Soon it was time for chapel. The students begin the day with chapel every Wednesday, and the parents were invited to join. I waited in the lunch room so that Boo could go with his class and not be distracted by seeing me. I came into the sanctuary and he was seated so still and quietly with his class that I had to do a double take.

I sat in the back and swallowed back tears as they began the morning by singing these songs:

At the end of the chapel service, the children were asked to meet out front for class pictures. Oh boy. I did not expect this on the very first day. I had not prepared Boo. He hates having his picture taken. He almost always refuses to cooperate. I hung back and watched him go out with his class, hoping that going with the crowd would work in our favor. Sure enough, by the time I got outside, he was posing pleasantly with the other kids. His combined kindergarten/1st grade class is composed of eight girls and two boys. They are all totally adorable. After the class pictures I hugged him one more time and wished him a good day. Then I told him to go back to class with his friends. He walked down the sidewalk hand in hand with Mrs. W, never so much as glancing back toward me. I sighed. Then I thought again of this sign hanging just inside the front door:

And I knew that my Boo was in exactly the right place.

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.

Family Reunion

We have been home from our big trip to the family reunion for over a week now, and I've not said a thing about it. I have wanted to. But it is just so big. There is so much. My heart is so full. I don't know how to tell you or where to start. Boo was amazing. Awesome. Incredible. But what I saw last weekend was that he comes from a deep and rich background of amazing, awesome, and incredible. The time we spent there was fabulous, partly because I know Boo, how far I can push him, and when to stop pushing. Partly because Boo knows me. He knows he can push himself, and that his mom will always be there to run back to if he goes too far or gets too uncomfortable. Partly because Mammo and Grams are phenomenal. They know how and when to support, and when to back up. They can step in and do the explaining while I step out and do the calming. But here's the real key. Here's what made that weekend go from successful to incredible. My entire family is loving, accepting, happy, and eager to understand and help. Some of them already have a pretty good grasp on what autism looks and feels like, and some just got their first introduction. But every single one of them without exception gave me the distinct sense that they wanted to get it. They wanted to try. They wanted to help, to encourage, to understand, to connect. They didn't get scared or intimidated. They didn't ignore us or leave us out. They were oh so gently inclusive. Encouraging Boo without overwhelming him. Loving him without smothering him. Graciously giving him space and time when he needed it.

I have long said that my family is the stuff that soap operas are made of. We jokingly say that we put the "fun" in dysfunctional, but it is achingly true. There isn't a drama, a crisis, a breakup, a makeup, a trial or a joy that some member of my family hasn't been through. We're messy, we're sticky, we're crazy, and we drive each other nuts. But let me tell you something about my family; when it comes to love, we have the market cornered. There isn't anything we can't love each other through. No one can mess up badly enough, be emotionally screwed up enough, or behave badly enough that we stop loving them and supporting them. As a family, we are not defined by our missteps and mishaps. We are re-shaped by them. But we are defined by our recoveries, our victories, and our triumphs. Sure we get irritated with one another, we get angry, some of us go long periods without talking. But we get past it. We move on. We realize that we aren't responsible for each other and we can't change each other, so we might as well just enjoy each other. So even though some of us drink too much, and some of us talk too much, and some of us laugh too loudly, and some of us roll our eyes too frequently, and some of us can never arrive on time...we can still all get together and sit in a huge circle on a big stone patio and sing Amazing Grace together. We accept each other. We value each other. We love each other. This isn't something new we've started. It's woven into the fabric of who we are as a family. It's not just what we do, it's who we are. So dealing with Boo, learning how to be with him, how to make him comfortable, how to include him...it was second nature. It was seamless. I shouldn't have been worried leading up to the trip, and I shouldn't have been surprised by how it turned out.

There are so many small stories encompassed in the larger one. So many special moments. Difficult moments that we navigated with the gentle loving help of the family, and amazingly victorious moments facilitated by the very nature of their love. They made my Boo feel comfortable in their midst, despite the fact that he was in a strange place, surrounded by strangers, and following nothing at all resembling his normal routine or schedule. He soared. And the palpable love and acceptance of everyone who was there helped give him the wings. I would like to tell you all the little things that happened. For now, to attempt that feels overwhelming. So I will try to put the small stories in subsequent posts for you. Today, I'm still just marveling at the joy of the entire experience. And I am praising God for giving me the phenomenal family He did. I am very blessed.

Independence Day Highs and Lows

Overall, we had a very happy fourth of July. We hope you did too. This morning we ran a few errands and hit the fireworks stand, where Boo picked out several likely looking explosives. We spent the afternoon playing and baking. Then in the early evening, we headed over to Grandpa's house for the weekly family barbecue. It just so happened that this fabulous holiday fell on our regular barbecue night, so my dad decided to go all out.

This is a half-scale replica of a civil war cannon, made by my grandfather

When I was a child, my grandfather and my father belonged to a club which had as one of its activities, regular themed camp outs called rendezvous. At a rendezvous, you camped with only clothing and equipment that would have been available to early Americans before a specified date. (which date I am uncertain of, precisely) With the notable exception of coolers with food and ice, and cans of beer. LOL I remember these events with great fondness. My cousin and I were probably around ages 4 and 6, and our grandma sewed us special dresses and bonnets to wear. We called them our Little House on the Prairie dresses. There were interesting characters, all manor of tents, fascinating clothes, and horses. I remember what a treat it was to walk to a neighboring tent where a friend of my grandparents sold two lemon drops for a penny. I remember my grandpa, Dad, and my uncle looking so handsome in their outfits. I remember the tomahawk throwing competitions, black powder rifle contests, and the highlight, cannon shooting competitions. I am told that Grandpa never lost a competition in which he entered the cannon pictured above, which he built himself. I remember the thrill of the cannon being shot. The excitement, the reverberation of the shot vibrating in my chest, the smell of the gunpowder, the waft of smoke. My grandfather suffered a massive heart attack when I was quite young. By the grace of God he survived, but he was forced to give up a number of activities he loved, including the rendezvous. That cannon hasn't been shot since 1986...until today!

When Dad announced last week that he had decided to shoot the cannon for the fourth, my cousins and I were instantly transformed into a bunch of eight year olds. I have been looking forward to this day ever since. But in the back of my mind there lingered a touch of apprehension about how Boo would react. I arrived at Dad's house a bit early to see if I could be of any help. He got up on a ladder and pulled down a large plastic back from the storage area in the top of his shop. He passed it down to me, and I peeked inside.

I looked in and there were Grandpa's rendezvous hats. It took me by such surprise. Dad hadn't told me he was getting them out. It was a great joy, but tinged with the pang of sadness. My grandpa left this world six years, one month, and one day ago. I miss him so very much. Looking in that bag, it was like he was with us again in a way. My heart jumped and I had to choke back tears. Happy tears, grateful for the wonderful memories he left me, with which to remember him. Soon the rest of the family arrived, and my cousins and I each chose a hat, and wore it the rest of the evening, in the spirit of the day.

When our dinner was done, we all headed out to gather around the cannon. We listened as Dad reviewed the safety rules and procedures. He called for the "powder monkey" and my youngest cousin did the honors. The steps were explained. First, a long stick with some material on the end (what looked like maybe wool? I didn't ask.) was dunked in a bucket of water and passed down into the cannon barrel for a "wet swab." Next, another stick with a sort of iron spiral on the end, known as the "screw" was stuck into the barrel, to pull out any particles that may have remained there from the previous shot. Then another wet swab. Wearing large fireproof protective gloves, the powder money holds the shot (a measured amount of gunpowder wrapped in a cone of aluminum foil of specific diameter) at the end of the barrel, and the rifleman pushes it to the back of the barrel with another stick-like instrument. (These all probably have technical terms of which I am unaware) Then, the firing thing (which I did know the name of earlier tonight, but have forgotten) is inserted into a tiny hole at the top of the barrel. When the firing thing is struck it creates the spark which ignites the gunpowder. Grandpa used to have a mechanism devised for doing so with the pull of a cord. That mechanism has gone missing in the long years since we last fired the cannon, so there was a bit of improvisation. Firing the cannon by hitting the top of it with an aluminum baseball bat might not be the most authentic, but it's a heck of a lot of fun! So we were all set to blow the first shot. I called Boo to me and covered his ears, and we let him do the countdown so that he knew exactly when to expect the noise and could feel in control of it. BOOM! Boo's eyes lit up, he smiled ear to ear and shouted "Do that AGAIN!" I was totally floored, and absolutely thrilled. He remained for the next five shots, holding his ears and providing a countdown for each. My dad, my uncle, and each of us cousins took our turns "at bat." It was exhilarating, and I know my grandpa would be so proud of us for putting his cannon to use once again. And for instilling the love of it to the next generation.

My aunt caught this amazing shot of my turn to fire! How cool is that?

After that, it was back to more traditional forms of Independence Day fun. My cousin introduced Boo to her favorite kind of firework, snakes! He really enjoyed them. He laughed and said they look like poop. Leave it to a five year old. LOL

The best part of snakes, apparently, is crushing them to bits with a stick when they are done.

At one point, Boo asked me how to spell Grandpa. Later I found this written in the sand. It doesn't show well in the picture, but it was awesome!

I also introduced Boo to colored smoke balls and poppers, both of which were a big hit. At dusk we broke out the sparklers. As soon as Boo's was lit he threw it on the ground and ran screaming. Once we showed him how to work them he loved them, but refused to hold them. But my cousins and I acted like the big kids we are at heart and had great fun with them. Then the barbecue broke up and we headed home to shoot off our own fireworks. Boo became even more excited as we drove into town and he saw all the bright sparks in the air all around. He kept talking about how much he loved fireworks and how pretty they are. We got home, got out our bags of explosives, filled our emergency water bucket, and waited for my cousins to arrive. But as the fireworks all around town began to reach a crescendo, so did Boo's anxiety. With every report, every squeal, every crackle, he grew more tense and fearful. Covering his ears was no help. We managed to get through only one of our fireworks before he was completely overwhelmed and ran crying into the house. I went in and set him on a chair in front of the large picture window, where he would have a view of our fireworks without the intensity of the noise. This lasted a little while, but eventually he lost it completely. I had to take a break and come in with him. He was running through the house shrieking, not able to find any place where the sound of the explosions outside was completely muffled. After a great effort, we got him settled in his bed, under his weighted blanket, with his leap pad game to drown out the other noises. He was still agitated, but he could tolerate it. I went outside with my cousins and we finished blowing stuff up, and then said good night.

It took me a while to quiet Boo enough for sleep. He was antsy and agitated, and every little noise was like poking him with a needle. Finally exhaustion took over and his eyelids fluttered closed. I lay beside him watching his precious face. I felt elated at all he had accomplished in the day. I mean, the kid watched a cannon being shot. A freaking CANNON. Multiple times. And loved it! That's HUGE in our world. But the key was that it was one shot at a time, he knew when it was coming, and he was given some control over it. When it came to the fireworks, the sounds and sensations were coming from everywhere at once. There was no reprieve, no time between explosions to reset himself, no way to know when or from where the next shot would come. And the joy of sharing this wonderful day with my son was also pierced with frustration. Not because I was frustrated at him  or by him. Rather, I was frustrated that something that is typically such a simple pleasure of childhood would, for him, have to be a source of pain and anxiety. And I wondered if next year would be a little better. In the end, though, I can't escape the fact that this day was a tremendous success. 





My Mathmatician

Math is something that I have always loved. It always just came so naturally to me, like second nature. I still love doing math. Nothing thrills me more than for one of my younger cousins or my friends children to call me up and ask for help with their algebra. I love it because it is rational and concrete. There is no gray area, no room for personal interpretation. There is one correct answer and there is a way to find it. There is no analyzing, no conjecture, no supposition. Apparently, my son shares this love and natural ability with me.

By the time his preschool year was over, he was already doing basic addition. He picked up the concept easily, and was a pro at adding single digit numbers together. At some point, I had introduced him to the concept of subtraction, but didn't really push it too much. Then, in preparation for our recent family reunion trip, I bought him a new game for his leap pad. The Penguins of Madagascar, Operation Plushy Rescue. The packaging said that the game works on skills of animal facts, patterns, more than, less than, addition, and subtraction. The basic game play is similar to old school Nintendo. The game play is punctuated with puzzles to solve and questions to answer. He played the game incessantly for two days, never once asking for help with any of the challenges. In no time flat, he had mastered subtraction, addition and subtraction involving two digit numbers, and even basic algebraic equations! (like 9+?=10) I didn't even realize how well he was doing at first.

Last night at bedtime, he was quizzing me with math problems, which is one of his favorite things to do. I was quizzing him back also. I asked "what is fifteen minus two?" Without hesitation he answered "thirteen, because it takes away the fifteen and the fourteen." Wow. He doesn't use fingers, doesn't count in his head, he just answers. He knows it by rote, yes, but he also gets it. He understands the relationships between the numbers. There was more evidence of this today when we picked up his friend Little Britches. In the car on the way back to our house, he was showing his new game to his friend. LB got to a point in the game where he needed to answer a math problem. It was subtraction. The game asked what is six minus three. LB asked what does minus mean? Boo answered him, "it means taking away something." I further explained this way. "If you have six of something, and you take three of them away, how many would you have left?" Boo responded, "three, because three plus three equals six."

Not only am I stunned that he has attained this level of understanding before he even enters kindergarten, I am blown away that it all has just come easily and naturally to him. It's not something he's been purposefully taught. He just picked it up. Just the way he did letters, numbers, letter sounds, and reading. The kid is scary smart. I'm not sure I'm going to be able to keep up with him by the time he's in sixth grade!