To Bee or Not to Bee: The sting of fear and anxiety

Boo recently developed a fear of bees. I'm not sure where this fear originated exactly. He's never had an encounter with a bee. He did rent The Bee Movie from the library this summer. And he did recently develop a perseverative interest in the show Fetch with Ruff Ruffman, which has an episode about bees in which one of the children is afraid of bees and talks about having been stung. Perhaps that partially explains it. Whatever the source, he began to express worry about bees, not wanting to go outside and play because he thought he saw one. We tried to downplay the danger, telling him there was no need for worry and that bees don't WANT to sting people so as long as you just be still and leave them alone they will leave you alone. Little did we know we were setting the stage for the perfect storm of anxiety.

It was a warm Wednesday evening. We were at my dad's house for our weekly "family barbecue." This has been a favorite summertime activity for the past few years. One evening a week our extended family gathers together for a barbecue at which the host (hosting alternates between families) grills an entree and everyone brings a dish and we enjoy a meal, each other's company, and the outdoors. Boo had been playing happily in the sand pile near Grandpa's driveway. Boo's Dad and I were sitting with the group chatting and eating some chips. When the meal was ready, I went into the shop building where the food was set out and filled a plate. When I came back outside I glanced toward the sand pile and something was just...off. Boo was sitting in a squat position in the sand, in absolute stillness. Boo is never still. Ever. Not even in his sleep. Something was wrong. Ever so slowly he turned his head and on his face was an expression I can't even name. He was clearly crying, but his features held a mixture of desperation and terror. I set my plate on the nearest chair and went running.

I knelt behind Boo and asked him what was wrong. He said there was a bug on his leg. I looked down and saw a fly perched on his shin and I waved it away. I said that it was a fly and that it is gone now. He wailed "I thought it was a bee! I saw stripes!" His head was soaked with sweat. Tears streaked down his cheeks and his hair was matted to his face. I assured him that he was safe and that there was no bee. He said that he had thought it was a bee and that he was trying so hard to be still so that it wouldn't sting him. I don't know how long he had been sitting there like that. His body was stiff. I began wiping his face as he wept bitterly, telling me over and over how scared he had felt. I asked why he didn't call for me, since I was nearby. He said he was afraid that if he yelled it would scare the bee and make it sting him. My heart was breaking as it became clear just how terrified my poor boy had felt. I put my arms around him and helped him stand up and that's when he told me that he had wet his pants while he sat there. I choked back my own tears, knowing that Boo cannot handle seeing me cry. I don't even know if I can fathom the force of will required for my boy to force his body into absolute stillness such as this. He hadn't even chanced a dip of his head to glance at the presumed bee. I'd had no idea his fear of bees had reached this level of intensity.

I managed to walk him through the garage and strip his wet sandy clothes off and get him into the bathroom. I helped him wash his hands and feet, and wipe his face. He continued to weep desperately and cling to me. He was begging to go home. He knew that there had been no bee after all, but he told me that he couldn't stop feeling scared, couldn't stop thinking about it. I assured him it was okay to feel his feelings, and that I would keep him safe. He kept telling me how much he loves me. He agreed to wait there in the bathroom while I got him some clean clothes from the car. I helped him get dressed and he agreed to stay in the house and wait just long enough for me to eat my food before going home...but ONLY if I sent Daddy in to wait with him. I went back outside and explained to Daddy what had happened, and he went in to sit with Boo. Shortly before I finished eating, Boo emerged from the house and began playing with the older kids. I was very surprised that he was willing not only to stay, but to be outside! I couldn't believe what a fast recovery he had made from the strangle-hold of anxiety.

I took a lot away from that experience. I will be much more careful from now on about helping Boo manage his fears and anxieties. Instead of taking it lightly and giving offhand advice like "just be still" I will work on giving him concrete steps and action plans whenever possible. We have discussed bees and he knows that he can move an arm or a leg slowly to let the bee know that "I am a person, not a flower" and the bee will fly away. I have also told him that he can ALWAYS call out to me when he is scared or feels he is in danger. I'm not sure how much got through to him. I was sure to let his teacher know what had happened so she is aware of the intensity of his fear. I didn't want her to take it lightly if he had difficulty on the playground.  And I still don't know how his fear turned so intense right under my nose without me realizing it.

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.

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. 





It Is What It Is

I follow a lot of other blogging/facebooking parents of spectrum kiddos. For the most part, they help keep me sane. They educate and inform my opinions and ideas. They expand my horizons. They give me support. They give me hope. They show me what is possible, where we can go in time. They show me that it won't always be like this. They also show me that it's OK to be real and to say "this sucks." They show me that I'm not alone in either my experiences or my feelings about them.

I try really hard to keep the overall vibe of this blog positive. I don't want to come here only when it's hard and I need to vent, neglecting the times when it's awesome and I can brag. I want this to be a place that reflects our life: full of love, usually happy, often difficult, sometimes heartbreaking, but always...ALWAYS worth it. The last few weeks it's been a little harder to keep my balance. And because I follow those other parents...I realize that I'm not alone. It seems the overall trend in the community right now is "this is freaking tough." And little wonder...for most of us, school recently let out for the summer.

Today was the first day of Boo's swimming lessons. He was showing token resistance to the idea ever since I wrote it on the calendar at the beginning of the month. But he gives token resistance to almost everything. I just ignored it and didn't push. But when the time came this morning, it got really ugly really fast. He is scared of the very idea. I believe the real core of the problem is that there is absolutely nothing in his experience that even comes close to this, and he has no idea what to expect. When he doesn't know what to expect his anxiety goes through the roof. He bawled and refused to leave the house. Reasons he gave were mostly along the lines of being afraid that he would go underwater. No matter how much I assured him that they do not have you go underwater, we stay in the shallow part, Mommy will be right there to keep you safe...nothing helped. He just couldn't visualize it and he was terrified. I never insisted that he had to go, but I kept trying hard to encourage him to go, trying to help him understand what it would be like and that he would be safe and have fun. He would hear none of it. He kept begging to watch TV, play on computer, or play with my phone. I wouldn't let him have any of those things if he refused to go to swim lessons. That brought him to full blown meltdown. Not quite the nuclear variety I had seen in recent weeks, but a meltdown nonetheless.

And as tends to happen, Boo's meltdown brought on one of my own. He flung his body at me, pushing, swinging, hitting, kicking my body and shrieking high pitched sounds. I removed myself from his clinging limbs, which is no small feat, and walked to another room. I picked up my phone and started typing out a text to my mom. I wasn't three words into it before I couldn't see the screen for my tears. "I f*ing hate this Mom. I hate autism and I hate the agony and anxiety it puts my kid in. He shouldn't have to fight so hard to just BE. It's so damn unfair. I just want to rage but there's nowhere to direct it."

And even as I typed it, I felt like I was betraying my child and the entire autism community. I thought of all the blog posts and facebook comment threads I've read about how people would never dream of taking autism away from their child if such a thing were possible. And I know that its so much a part of who he is, and that I need to love and honor and celebrate it as such. But there are times, there are days, when if I'm being really brutally honest...with myself as well as with all of you...I have to admit that my real feelings are more along the lines of "autism can kiss my a**." And I have vowed to be honest here. Not that I'll tell you everything, but that I will keep it real. I won't gloss over the hard stuff, nor will I sensationalize it. Because the only way we can move others from pity or intolerance to understanding, is to be real. Because as my husband always reminds me, "it is what it is." There is no need to try to excuse or qualify anything. It just is what it is.

So today, yeah, autism sucks and I hate it. Not because it is hard for me, though it can be. Not because I have trouble getting Boo to do what he needs to do, though I can. Not because I have to adjust my hopes and dreams for my son to reflect both his strengths and his limitations, though I do. I hate autism because it makes it so damn hard for my son to just BE. I hate watching him fight his anxiety. I hate watching him writhe and rage when he can't stand the feeling of being in his own skin. I hate watching him try so hard over and over to be sociable with his peers only to be met with blank stares when they don't know what the hell he's talking about. I hate watching him instantly transform from joyfully blissful to terrified when assaulted by a sudden strange loud noise. I hate hearing him beg through tears "I just wanna go home" when he is home. Just as any parent, I hate seeing my child in pain.

And to be fair, there are ever so many more things that I love about his autism, and the person it makes him. But those just aren't making the highlight reel today. And that's OK. Those will appear in another post on another day, and hopefully it balances out overall. Because I promise you I don't always feel this way. But for now...it is what it is.

Pay No Attention to the Mother Behind the Blog

People in my "real life" and even some from online are apt to compliment me often on my parenting. They tell me what a great mom I am, what a great job I'm doing with Boo, how lucky he is to have me. At times, I've actually felt quite exasperated with his special ed team for telling me that I am already doing everything they would recommend, because that doesn't give me any new tools with which to work. It's nice to hear, but not practically helpful. I try to always accept such praises humbly and graciously but not to let it go to my head. But I am human, and apt to get a swelled ego at times. Especially when my efforts with Boo are particularly effective. When I am able to calm the tempest, solve the sensory puzzle, or impart understanding of a new concept I am liable to swell up a bit and pat myself on the back. But there is one small person with a big influence in my life who knows how to swiftly and effectively bring me off my high horse and put me in my place.

I have found myself sitting on the dining room floor bawling while Boo rages and writhes nearby, the popcorn strewn about that he spilled and refuses to help pick up seeming to mock me. I have found myself sitting on the bedroom floor while Boo sits naked beside me screaming, unwilling or unable to choose between the new swimming trunks with the drawstring he can't stand and a pair of regular shorts, but terrified that the friends waiting for him to join them in the backyard will give up and leave. I have found myself sitting in the living room bawling as Boo writhes in pain, refusing all attempts at comforting him, refusing to allow any of the things I assure him will alleviate the hurt. I have found myself sitting on the front porch bawling as he howls and screams in the front yard, giving the neighbors a dramatic display of what the ugly side of autism can sometimes look like. I have found myself sitting in the car in front of the local convenience store, my fifty pound five year old having a full-on tantrum in the back seat, then clambering into my lap and proceeding to beat me up and scream as though he were the one being attacked. I have watched the scornful, shocked, judgmental, and pitying glances from onlookers as I tried in vain to bring my child back to a state of self-control.

It is times like those when little Toto pulls back the curtain and reveals the faltering, stammering, feeble human behind the smoke and mirror show that was the Great and Powerful Oz. I feel like a fraud. Like a sham. Like I have no business writing this blog, or talking about autism as if I have any clue what the hell I'm doing. I feel stupid, ineffectual, impotent. I have no idea what I'm doing most of the time. It's all by the seat of my pants. I try to make it all look good on the outside, but on the inside I constantly feel like I'm screwing it all up. I don't understand him. I don't know what he needs. I don't understand how he feels. I can't even get him to do something so simple as to pick up some flipping popcorn he spilled on the floor. I feel like I'm failing my boy. My cherished, wonderful, beautiful little boy, to whom I would give anything in this world that could help him mitigate these challenges, if only I had it to give.

When he begs me to help him "figure out what to do" I ache inside, wishing I had the power he believes I do. And all I can do is hope, pray, and believe that all the tools he needs to help him successfully navigate this world are things he already possesses. I hope that, like the Wizard, I can help him find and use the tools he already has, and show him how to get where he wants to go.

Boo is Weird

Yesterday afternoon Boo was starting to get restless and unhappy, so I suggested that we go to the park. He was elated by this idea. He said he didn't want to go to the park with the red slide (two blocks from home) but rather the one with the blue slide (other side of town...which in my town means about a three minute drive.) This was fine with me, as I prefer the park with the blue slide anyway. So we loaded up and headed out. But as I neared the park I cringed. The park with the blue slide is along side of the community building, which townspeople can rent for events. There were cars everywhere. Clearly the community building was rented for the day. The park was crawling with people.

We pulled up in front and I parked the car. I stared into the park. There were children everywhere. Boo saw them too, but he was elated. I was worried. I looked at the community building and there was a large banner draped on it announcing a family reunion. I cursed silently in my head. I surveyed the scene. I was weighing the possible outcomes of leaving vs staying and invading this family reunion. I decided that the latter was the lessor of two struggles and we exited the car.

Boo ran happily over to the blue slide, climbed up, and started chattering at the kids. I took a seat at a nearby picnic table under a shade tree, eyes and ears on high alert. I heard him at the top of the slide announcing "It's your friendly neighborhood Spiderman!" and I chuckled. But immediately after that, I noticed a confrontation taking place between Boo and an older boy. The boys face was contorted with some emotion I couldn't quite name. I was trying to figure out what was going on and at what point I should intervene. Boo was trying to avoid the boy, but the boy was following him, hounding him. I saw them put hands on one another's chests, but never in an overtly aggressive manor. Boo kept disengaging from the boy and going back to the other children, but whenever he would speak to them, the boy would get in his face again. Boo was trying to push him away, but the boy would take that as an aggressive move and put hands on Boo. I was incredulous, looking around the park for this child's parents. A moment later, I saw Boo walking away from the slide area, down the walking path which winds around the park. The boy was following closely behind, taunting him.

"Spiderman is STUPID!"
"NO he's NOT!"
"Yes he is. Spiderman is STUPID and all kids who like him are WEIRD!"

Ok, this is enough. Just as I made the decision that it was time to step in and stop this bully, they both put hands on one another and the real shoving match began. I barked at them, a loud and terse "HEY" that was heard across the park. The boy's head shot in my direction and he took off, ran to another nearby picnic table area. He was still close enough to hear everything I was saying. I addressed first things first.

"Boo, you can not put your hands on other kids like that. If there is a problem, you get an adult to help."
"But mom, that kid said that Spiderman is stupid."
"I know. And that kid can think whatever he wants. That's just his opinion. We like Spiderman and that's just fine."

The boy's attention was rapt. He was taking in everything that I was saying, he was staring at me. I suggested that Boo just ignore that boy and not talk to him or play with him. I said "He's being mean to you honey. He doesn't want to play or be friends. He just wants to be mean and hurt your feelings. I think you should just leave him alone, ok?" I wasn't sure how much of that Boo took in, because he was acting very distracted. But he took off and started making laps back and forth along the walking path.

I sat there so incensed I was practically vibrating. I looked around the playground at all the children of various ages. My mind was racing. This is a snapshot of a school yard. This is what my son is up against. He's going to be bullied. Everything I've feared is playing itself out. Oh my god, how can I protect my baby? After a while, Boo decided to re-join the children clustered on and around the slide. A few minutes later, he was lingering on the opposite side of the slide where I couldn't see him. I got up and peeked around. He and the boy were sitting side by side on the large PVC pipe that surrounds the slide area. I tensed. But their postures were relaxed, their voices low. Soon, Boo stood up with a huge smile on his face and ran toward me shouting happily "He's not going to be mean to me anymore, Mom. Yeah, he's sorry he did that, and I forgave him." I exhaled in relief, realizing that I'd been holding my breath.

The children all continued playing together. I downgraded myself from red alert to orange. I picked up my phone and started a game of solitaire. There was another boy there who had caught my attention. He was gangly and cute. He wore glasses and a buzzed haircut. He was trying to assemble some sort of club amongst the children. The others agreed to join, but when he tried to assemble a "meeting" it quickly fell into chaos, due in part to Boo's incessant chatter and insistence on being the center of everyone's attention. The boy in glasses tried multiple times over the next hour or so to assemble his "meeting" with similar results.

I had relaxed even more in that time. Boo was playing happily, if oddly, with the children. They were tolerating him in an amused, sometimes confused, fashion. I was sitting at a picnic table in the shade enjoying the afternoon. The boy with glasses walked up to me and stated matter-of-factly "Boo is weird." My heart flew into my throat. Crap, crap, CRAP! I thought to myself. My mind raced. He doesn't blend. He doesn't fit in. The gap between him and his peers is getting bigger, not smaller. What if it becomes a chasm? What if he can't overcome it? What if he can't manage meaningful friendships? What if he's always thought of as the weird kid? What if...what if...what if...

I pulled myself together and calmly asked the boy with glasses "what makes you say that about him?"
"Well, he says weird stuff. And when we ask him something he says stuff that's not even words."
"What is your name?"
"Mick."
"How old are you, Mick?"
"Nine."
"Well Mick, have you ever heard of something called autism?"
"Um, yeah. I mean I've heard that word, but I don't know what it is."
"Well autism means that someone's brain works in an unusual way. Boo has autism, so his brain works differently than yours. He thinks differently and sometimes acts differently. But that's ok, because he's just a kid who wants to play and have fun, just like you. He just wants to be your friend. Also, he's only five, so he's not as mature as you are since you're nine."

Mick took it in stride and didn't ask any questions. He sat down at the table with me and struck up a conversation, asking me if I liked animals. As we chatted, he rattled off an astounding number of facts about a large variety of animals. He spoke in large chunks of what I recognized as "scripts," probably from a book or books. I began to wonder if autism was a word he had heard for a reason. We chatted at length and he pulled me in. He charmed me and wrapped me around his little finger just as I've seen Boo do with adults a hundred times. I got quite an education also. We spoke at length and eventually we were joined by the first boy, the one who thought Spiderman is stupid. I learned that his name was Nate. As it turned out, he was a pleasant boy, if a little intense. Eventually, the conversation wound itself up and the kids moved on.

Boo asked me to push him in the big swing. It's a large swing designed to facilitate kids with disabilities who can't hold themselves up in a regular swing, but it's very popular with kids of all abilities. When he decided he was done swinging, instead of just getting out he made a game of it. He called out to Mick. Mick and Nate came over, along with a few other kids. Boo told them "I made a code for you. If you can crack the code you can get me out of here." (A variation of the Jack Bowser game on PBSkids.org) They immediately began blurting out possible 'code words' they thought might work, like "Spiderman!" But that wasn't the kind of code Boo had in mind. He was acting out a "script" from a video game. He launched into a long rambling explanation of how it was to work. He was going to pose a number of questions to the other kids and they had a number of chances to get a number of correct answers in order to win the right to free him from the swing. The numbers and the details were being constantly changed as the explanation went on. Boo would repeatedly back up, start over, change parts, add rules, and generally make what was essentially a simple quiz game sound like the most complicated ordeal in the world. The kids were gathered around him in a circle, and I watched them continually exchange questioning glances with one another.

Finally, Boo got around to posing the first question. "How tall is a giraffe?"
Mick asked him, "Do you know the answer?" Boo replied that he did not, and all the kids laughed. Mick inquired "How will you know if we answer it correctly if you don't know the answer?" Not understanding Mick's question, Boo simply moved on to the next item. I don't remember what he asked, but it was also something that he himself didn't know the answer to. Mick posed the same challenge, and again, all the children laughed.

I looked at Mick. "Do you remember autism? He's trying to make this game be like a game he plays on the computer. That's one of the things he likes to do that seems a little funny to other people. But he just wants to play with you." Mick nodded, and he and the other boys answered the next several of Boo's questions and managed to 'free' him from the swing.

They ran around playing for a while, and then Mick again tried to organize his animal club meeting. I agreed to attend. Boo was happy to go as well, but was trying to run it and make people listen to one of his own soliloquies. I called him over to me and explained that what Mick wanted to do for the meeting was for us to listen to him tell us all about polar bears. Boo sat quietly, and Mick began his speech. He was repeating the information he'd told me earlier verbatim. Yep, scripting. I was starting to love this kid. He stood atop a picnic table, trying hard to recall enough facts to qualify as a speech. Boo was quickly uninterested, but I made it a point to give Mick my rapt attention. Nate was serving as 'secretary' of the club. As near as I could tell, the duties of that position included sitting on the table next to Mick and occasionally whispering more facts in his ear when his speech got stuck. (This was clearly a conversation that had been ongoing between them for some time) Eventually the meeting was dismissed.

At that point, we had been in the park for about two hours and it was time to leave. To abbreviate the end of this little tale, let's just say I had to haul Boo away kicking and screaming. He did NOT want to leave the other kids. It took a while for Boo to settle and his meltdown to subside. It took even longer for me to wrap my mind and heart around all that had happened. It was clear to me that it was possible for Boo to be successful in a social setting with his peers, but that it was not going to happen without support. I am certain that if I had not been paying close attention, it would have been ugly. And had I not been watching closely enough to see the beginning of the problem, he would have simply been in trouble for fighting and it would have left him confused and frustrated.

It was clear that not only do we need to work on giving Boo the tools he needs to navigate social interaction, but we also have to work just as hard giving his peers the knowledge and education they need in order to be understanding and compassionate. His classmates need to be taught about his differences. It's clear to me that he is not going to "blend" as well as I had hoped. I will have to do some work to figure out the best means of accomplishing that, and I am confident that the kindergarten teacher will be receptive and helpful in that effort. It was a hard pill to swallow, but it's important to face.

A Storm Brewing

It was a beautiful day. Boo and I had a great morning together. I got the yard mowed, and Boo and The Wiener Dog pretended to be superheroes while the lawn mower played the part of the villain. I had a nice bath and washed the grass off, and only at the very end did Boo attempt to climb in with me and insist on giving me toys. Because, you know, you are being deprived if you have no toys in your bathtub.

We made a quick trip to the local grocery store for a jar of mayo. Boo insisted on staying in the car while I ran inside. When I got back, I found him sitting in his seat with his chin on his chest. I asked him what was wrong. No answer. I asked again. No answer. "Booooo????" A small voice replied "I'm sleeping, stop bothering me." I stifled a giggle, then stage whispered to myself "Darn, I can't give Boo these chicken strips I bought him because he is sleeping." Grocery store chicken strips are one of his favorite things lately. Chin still on his chest, he reached one hand toward me and said with a sigh "I guess I'll take them. They help me to stop sleeping sometimes."

Back at home, Boo got busy playing with toys and imagining all sorts of games. His imaginative play is often structured like a computer game, complete with imaginary buttons he invites you to "click." I knew that the forecast called for storms in the evening. I noted that the clouds had begun to move in. Boo's normal complete inability to be still for two seconds hyperactivity was even more pronounced than usual. Boo's Dad arrived home for the first time in three days. Boo was ecstatic to see his dad. I set to work making a dish to take to the family barbecue later, and listened in to their play. Boo was scripting himself and his dad. He was creating races and had less than usual tolerance for deviation from his idea of how it should go.

Boo: "Dad, do you like car number 2?"
Dad: "Yeah!"
B: "No you don't."
D: "Ok."
B: "Dad, do you like car number 2?"
D: "No."
B: "Why not?"

later...

B: "Ok, Dad, the speed limit is 55, so you can drive that or slower. But not faster."
D: "Ok."
(Boo counts down and starts the race, and dad rockets around the "track" ahead of him.)
B: "NO Dad! You weren't supposed to go that fast!"
D: "I was only going 54."
B: "That's too fast."
D: "You said it was 55 or slower, so I went 54."
B: "No, it's only 5. I changed it."

The longer it went on, the more incessant Boo's chatter became. I was cracking up listening. Mostly because I was in a state of joy that there was another set of ears in the house again and it wasn't directed solely at me. Dad eventually went to attempt a nap before time for the barbecue. Next thing I knew, Boo was running circles around the house at top speed. He was a ball of pure energy, unstoppable and intense. I began to countdown the minutes till the barbecue began, longing for him to be able to run, climb, and pedal his way around the place.

Outside, the wind was picking up and the temperature was beginning to cool. I decided that Boo and I ought to change from shorts to pants. We changed clothes and I started gathering things together to get ready to leave. Boo wanted to take his toy Lightening McQueen with him but couldn't find it. He was screaming and upset, and refusing to go. It seemed like a meltdown was imminent, but suddenly he calmed and decided that rather than taking the plastic toy that had been on his birthday cake when he turned four, he could take the metal one he had been playing with just five minutes earlier. But we couldn't find that one either. It was a downright Lightning emergency. Finally it was located and we all headed out to the car.

For a while after we arrived, everything was perfect. Boo was playing happily. I was enjoying adult conversation. I realized I had forgotten to bring my dish, so I headed back into town to get it. On the way back I photographed this cloud bank moving in.

Shortly after I got back to my dad's house the wind picked up furiously and it started to rain. We moved inside the shop building, said a prayer, and began to fill our plates. Of course, there was nothing there that Boo would even consider eating. I had tried to get him to eat before we left home, but he only had three small strips of garlic cheese bread. He is usually content just to play outside while the rest of us eat but this time he was not happy about being cooped up in the shop. The floor in front of the shop doors was wet from the rain and Boo slipped and fell on the slippery concrete. He cried about his hip hurting, but soon got back up and insisted on walking back and forth in front of the doors repeatedly. After a few more falls I finally insisted that he stop walking in the wet area. So he decided to take up a campaign for going home immediately. He whined and begged the entire time I was trying to eat my meal. The main problem was that the seat of his pants was wet from his repeated falls on the wet concrete. But beyond that, he was simply bored.

I continually suggested that he choose from his selection of toys his grandpa keeps in the shop, but he refused. He decided that he wanted to play darts, and set about making the rounds among the family asking each one in turn if they were finished eating. He finally found someone to play with him and for a while his wet pants were forgotten. Later, as everyone was leaving, he found his tricycle and started riding circles around the shop at top speed, shouting "Look out, train coming through-woo!" I helped with cleaning up the place. But when it was time to leave Boo refused to get off the bike. It took repeated requests, and finally the threat of a swat to get him off the bike. He put it away but refused to leave. After having spent most of the evening annoying the daylights out of me begging to go home, when it was actually time to leave he was begging to stay. I had pulled my car around in front of the shop so we wouldn't have to walk far in the rain.

My husband was gathering our belongings as I attempted to get Boo to go to the car. He dug in his heels and his tantrum began to lean toward a meltdown. My nerves were hanging by a thread. The entire evening felt like a trial instead of a joy. I insisted, and he hit me. I swatted his backside and he hit meltdown status. I picked him up and asked my step mother to open the door for me. I carried him to the car, and had to force him screaming and flailing into his car seat. He was clawing at the seat belt trying to prevent me from buckling it, but I finally got it done. By then my husband was on his way out with both his hands full, so I opened his car door for him. As he sat down, Boo was furiously pummeling the back of the passenger seat with his feet and screaming like a banshee. I snapped at him to knock it off and he stopped kicking. As I walked around to my side of the car my step mom caught my eye from where she stood in the doorway of the shop and she remarked "You know, a wooden spoon works great for that."

I was tired, annoyed, stressed, standing in the rain, and ready to snap like a crocodile. I shot her the nastiest glare I could muster and shouted past her "goodbye Dad." Then I got into the car and drove us home. Boo continued his blood-boiling scream in the backseat for a couple minutes before it began to subside. He had smacked his finger on a table while pretending to be a train and now he suddenly decided this was a terrible injury. We arrived home and I got him settled with an ice pack on his finger and an episode of Spiderman and His Amazing Friends on the TV. He ate a bowl of cheese crackers while the show played, and afterward he happily transitioned to his bedtime routine and fell peacefully and soundly asleep. But the thunder in my mind and heart continued rolling long after the thunder outside faded into the distance.

"As the storm blows on, out of control...deep in her heart, the thunder rolls." 
The Thunder Rolls, Garth Brooks

The Haircut Post. My Epic Parenting Fail.

"I was looking shaggy, not too good, I'd put it off as long as I could. Lord, I hate to get a haircut out of town." ~Ray Stevens, The Haircut Song

Boo hates haircuts. And I've had so many parents tell me 'oh, I know, my kid hates them too' and I'm like, no. He hates haircuts with an intensity you can't imagine! His sensory difficulties kick into high gear. Although he's never been officially diagnosed with it, I'm fairly certain we are dealing with sensory processing disorder (SPD) along with the autism. Boo absolutely can not tolerate the sensation of the hair falling on him. In fact, he pretty much hates all things to do with hair. Washing, drying, combing. Even the gentlest attempt to comb through it with "tangle spray" applied makes him shriek in pain, saying that I'm pulling his hair. Consequently, we tend to go a looooooong time between haircuts.

But the longer the hair gets, the more difficulty we start to have with the washing and the combing. Plus, we start to get comments from family members. I have been trying to gently broach the subject of needing a haircut for a few weeks. He is adamantly opposed every time it is mentioned. Yesterday I was talking with him about it, tried to get him to sit for one, and he ended up telling me he wanted to do it at night. I knew this was just his tactic to put me off, and that come night he wouldn't actually be so compliant. But we struck a deal, and sealed it with a pinky promise.

Later that evening, I was shocked by his willingness to comply when I told him it was indeed time for the haircut. After a few attempts at stalling, he finally sat on a stool and I placed a sheet over his entire body like a cape. We were ready for a haircut. I knew from experience to save the bangs for last, since once he feels hair on his face he is done. I started by trimming around his right ear. He was watching an episode of Spiderman. I was patting myself on the back that this was going so well. Then I got real stupid. Instead of moving immediately to the left ear, I proceeded to start in the middle of the back of his head. Now, I am no sort of barber. I have been doing most of Boo's haircuts since he started getting them, but it doesn't come out real pretty. Still, he insists he is more comfortable with me doing it than going to the salon, so I hack away. If he can hold halfway still I can do a passable job. But he hates the sensation of the cutting. He hates the wet hair. He hates how it feels on the tiny space of neck that is exposed above the cape. With every snip, he was jerking and writhing, trying to get at his head from under the sheet. Just a couple cuts and he jerked the sheet and pulled it off, spilling hair down the front of himself. At that point, he was done. That was as much cooperation as I was going to get. But he looked ridiculous. One ear long, one trimmed, and a big chunk missing from the back of the head. I coaxed and talked, and he finally agreed to sit back down if I would get a new cape. So I got out another sheet and wrapped it around him.

But he had zero tolerance left in him. I did another couple cuts and he kept screaming and jerking and pulling the sheet off. I offered to "get it done really fast" by using the clippers. As badly as he hates haircuts...he abhors clippers! I tried reasoning. I told him he had to choose between the scissors and the clippers, and I would have to use the clippers if he would not sit still for the scissors. Every time I even turned the clippers on he went ape! He got down from the stool crying, and telling me he was finished. And that's when my brain apparently flew out the window. Because if I'd had an ounce of compassion or true understanding, I'd have left him alone. I'd have recognized his ability to verbalize when he's at his sensory limit, and I'd have respected it.

Instead, I looked at his hair. I looked at the jagged, ridiculous, half cut and I let my focus drift off of my child and his needs. Instead, I was thinking about what others would think. I was thinking about school the next morning. I was thinking of how silly he looked, instead of seeing how terrified he was. I knew better, but I failed to do better. I should have just left him alone, went in to school right behind him, and thumped anyone who had anything snide to say about his hair. But what I did was ugly. It's hard to even admit it in writing, but I've promised to be honest here. I took my precious boy and pulled him into my lap, then wrapped both of my legs around his waist to hold him down. I wrapped my left arm around his arms to hold them down, and I took the clippers in my right hand. And I forced him to endure it. And indeed it took a great deal of force. He is strong. And his adrenaline was pumping. He was screaming like I'd never heard him scream before. It reminded me of the time he had to have stitches in his face when he was a toddler. And while I'm pretty sure that the clippers themselves were physically painful for him...I think it was nothing compared to the physical and emotional pain I caused by restraining him and forcing it on him. He was begging me to stop. He screamed so horribly that my husband came up from the basement to see what was happening. Even with his help, it was all we could do to get the rest of the hair buzzed. I finally declared it good enough and let him go.

There was hair everywhere. Boo and I were both covered head to toe, and it was all over the living room. I quickly stripped him of his clothes, him still wailing because of the feeling of the hair on his skin. I picked him up and ran to the bathroom, promising to wash it off. I started the bath water and stripped my clothes off, while Daddy got him a cup of water and helped him rinse the hair from his mouth. Then I started trying to get him in the tub. But he didn't want to go in. He was just so worked up at this point, he couldn't even process what was happening and he resisted every movement, every word from me. Even as I took him into my arms and stepped into the tub together, he was screaming that he didn't want a bath. I sat with him and took a cup and started rinsing the hair off of him. My husband had to leave the room. I don't know if he was sad, frustrated, angry at me, or just couldn't take any more screaming. I never asked.

It took a long time, but Boo did eventually settle down in the bathtub. We got the hair off of him. We got the hair off of me. Through tears, he told me "Mom, when you were holding my arms and squishing me...I don't allow that." My heart broke. God love my son, he is certainly learn to self-advocate! He wanted to play, but felt he couldn't do so because of the hair in the water. So we drained the water and started again with fresh. We washed up. We played with the tub toys. We laughed and acted silly. I washed his hair and he didn't complain. Mostly because now that the hair was short, I didn't have to pull and scrub to get it clean. We got out of the tub and put on his robe. He went to have some play time with Daddy while I cleaned the hair from the living room. Then it was time for bed.

I cuddled up beside him, tucked him in with his bean bag blanket, and hugged him. A lot. I told him I was sorry for hurting him. He asked me when. I said, "when I cut your hair. I'm so sorry that I hurt you baby." He smiled at me. He told me "that's ok, mom. I forgive you." Then he very quickly drifted off to sleep. I laid beside him in tears. He forgave me. But it will take a lot longer for me to forgive myself.

The Three Food Groups

Getting Boo to eat is a struggle.

Correction: getting Boo to eat a halfway balanced, halfway healthy diet is a struggle.

Like many kids on the spectrum, foods are a huge issue for him. The problem seems to be largely a sensory issue. As a baby he would eat literally anything we put on a spoon. We made our own baby foods by steaming and pureeing whatever fruits and veggies were in season. He ate green beans, squash, avocado, pears, peaches, blueberries, cranberries, pumpkin, anything we could make smooth. But when the time came to transition to table food, he abruptly stopped eating. It has been a struggle ever since.

The foods that we do get him to eat have one thing in common. Consistency. As in, the food must be consistent throughout. Every bite having the same flavor and texture as the one before it and the one after it. For instance, he eats yogurt, but only flavors like orange, banana, key lime, and vanilla. If there are chunks of fruit in it, forget it! He likes various kinds of chips and crackers. He likes bread and toast, but only the "right kind, without seeds." (meaning NOT multi-grain) He likes a few kinds of cereals, and he likes milk, but you don't put the milk ON the cereal. For a long time the single source of meat in his diet was McDonald's chicken nuggets. No other kind would do. Thankfully we have recently discovered a love of Banquet brand popcorn chicken. He occasionally likes pizza, but only cheese pizza, and only from certain places. And if the sauce is visible? Forget about it!

I remember once a couple years ago at a church dinner I convinced him to try a baby carrot. At that time I still thought he was just being "picky" and that if I could just expose him to all the great flavors of foods I love, he would learn to love it too. I coaxed him into taking a bite with the promise of a piece of chocolate cake as a reward. He bravely bit off the carrot, chewed, and twisted up his little face as he tried to swallow. But he just couldn't get it past his gag reflex. The texture was too much for him to deal with. He threw up.

At any given time there are maybe 10-12 foods that Boo will eat, most of them not very healthy. Right now he is living on popcorn chicken, "stick pizza" (garlic cheese bread), toast, bacon, graham crackers, cheez-its, goldfish, lucky charms, fruit loops, fruit snacks, popcorn, and chocolate muffins. He will eat these same items, and only these items for MONTHS. Then suddenly he will seem to get tired of them. (who can blame him) He will refuse to eat the foods he loved just the day before, but it will take a couple weeks for him to find something he can put in its place. Those weeks are hell. When he is hungry, his behavior is horrid. But hunger does NOT drive him to eat if he doesn't have a food presented to him that he finds acceptable. Even before his diagnosis, when I would seek help for his "picky" eating habits, well meaning friends would give that sage advice "he won't starve." I wasn't so sure. I'm still not. I think if all he was ever offered to eat was vegetables, whole fruits, rice, and pork chops...he would starve himself. Seriously.

Our best defense in this struggle has been a sort of classification system for his foods. He is highly motivated by sweets. He loves chocolate (as long as it doesn't have something evil like nuts in it) and cake and ice cream and things like that. We try to limit these foods as much as we can. Early on, we began explaining the need for him to eat "healthy" foods in order to grow and be strong. He is not motivated by growing. He will tell you straight up that he prefers to remain a kid. And he insists that he can be strong simply by exercising. So our only successful motivation for him to eat healthy foods, was to reward him with "treat" foods. Now, I would prefer to keep the ratio of healthy foods high compared to the treats, but somehow we have gotten ourselves into a 1:1 rut. If you have a spectrum kid, you know how hard it can be to work your way out of those ruts! So the best I can do right now is to try to increase the portion size of the healthy foods, and decrease the portion size of the treats.

Now what happens when he decides to dig in his heels and refuse the healthy food? Because he has a healthy dose of stubbornness that his father insists he gets from me, but we all know comes from his father. ;) Sometimes he would simply rather starve himself, all the while throwing a loud ugly fit about being hungry, than eat something healthy. This is where the third category comes in: "snack" foods. These are foods that are a sort of compromise. They may not have much nutritional value, but they ease his hunger and help abate the behaviors without filling him full of sugar.

So here's how it ends up working. If he's hungry, I try to get him to eat a healthy. If he eats a healthy, he gets a treat. If he doesn't want to, he can choose a snack food, but a snack will not earn him a treat. It was never a system that was set up intentionally or proactively. We just kind of naturally fell into it from a combination of our terminology and Boo's tendency to categorize the world. But hey, it's working for us. And who cares if strangers look at me like a child abuser when my kid refers to McDonald's "chicken and fries" as healthy food? They just don't speak french.

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!"

Island Native

Have you ever watched the NBC series Parenthood? It's one of my favorites. I fell in love with it the first time I watched it. It was season 2 episode 5. Kristina, mother of the character with Asperger's, tried out a support group for the first time. It aired in October of 2010. This was four months before Boo's diagnosis. At this time, he was receiving special services at preschool for speech and occupational therapy, and we were waiting for the upcoming "free clinic" with the developmental pediatrician who would eventually diagnose him with PDD-NOS. I felt very lost at sea. My friends, online mothering forums, and family members kept telling me there was nothing wrong. Even Boo's preschool teacher told me she saw nothing unusual about him that couldn't be explained away by the fact that he was an only child who had only ever been kept by his mother and grandmother. (I think she was saying he was a spoiled brat, but nicely) Somewhere deep inside me I already knew. But I was trying to push it away, trying to will it not to be so. When we had good days I convinced myself that I was imagining things and that he simply needed to mature. When we had bad days, I felt completely alone and isolated. Adrift. So when another mom in the group spoke up, it was like she read my soul. She said the following:

"I cried in McDonald's today. I've been so stressed out, being at home with Anthony, my six year-old with Aspergers, all the time. I mean, my husband leaves for work at 7 in the morning and sometimes I don't see him again until 9. So it's just me and Anthony. All day. And don't get me wrong, God I love my son to pieces. But it's a little like living on an island all day with these weird rules that don't apply to other people. You know, thinking...thinking all the time. Is this gonna set him off? What's that noise? Should I drive home a different way to avoid the barking dog? Always living witht that...that pressure, always. So much that it feels like you can't breathe sometimes. You know what I mean?"

I bawled. I said to myself, to the tv, to the room...Oh my God, I know that island. I live there too. And now it's been a year and a half since that moment. But it is burned in my brain. And Boo and I both have made great strides since then. He has come a long way, I have learned so much more. We have, for the most part, moved onto the mainland. But there are times, when Boo has some hard days, some setbacks, or presents new challenges that I don't yet have the tools to handle...when I find myself smack in the middle of that island all over again. I've been back on the island for most of the past week. It started with the schedule upheaval following my return to stay-at-home-mommiehood. It continued with all the challenges in the days that followed.  Boo and I are still trying to settle in with each other, becoming accustomed to being together all the time again. And it has been quite a roller coaster ride!

We've had exhilarating highs, and deep lows. There has been a series of meltdowns. Bad ones. The nuclear variety. He has suddenly decided he will no longer tolerate having his hair washed. He has also eaten a banana, eaten popcorn chicken, made new friends, spent more time outside, and had lots of creative imaginative play. Tonight is supposed to be his spring program at school. He has been excited about it for weeks. Suddenly at bedtime last night he decided he doesn't want to go. I haven't gotten to the core of the problem. I hoped he'd forget about it overnight. (yeah, right!) But it was the first thing out of his mouth this morning too. But right now he seems pretty mellow. I'm hoping to work through it and that he will be able to participate with his class. We'll see what the day brings.

When he was good he was very very good, but....

There was a little girl
Who had a little curl
Right in the middle of her for'ed.
When she was good
She was very very good
But when she was bad she was horrid!

My Grams used to tell me this nursery rhyme when I was little. She told it to me a lot. In fact, now that I think about it, I wonder if it was some sort of commentary?...But I digress. ;) It reminds me of Boo. For the most part, he is a great kid. He is sweet, gentle, well behaved, and about as compliant as any four year old on the market. But when things are off kilter, when his coping skills are used up, it gets super ugly.

I love this post about the concept of triggers from A Resident Alien. My favorite quote from the post says "But we forget that triggers aren't the cause of meltdowns, any more than that one rainstorm caused the road to collapse. Just like the road had weaknesses to begin with, autistics don't have the sensory and cognitive equipment to deal with a lot of stuff that's trivial to deal with if you're NT." (NT stands for "neurotypical" meaning someone who does not have a form of autism or other disorder. I, like others in the community, prefer this word over the word "normal" because our kids are not abnormal. But I digress....again.)

I frequently find myself trying to explain the fact that whatever Boo is screaming about isn't actually what's bothering him. The trigger isn't actually the cause. I also find myself in a constant state of heightened awareness. Always on the lookout for signs that things are bubbling under the surface for my Boo, or for things which could tax his coping ability. But sometimes, even with my extreme caution and constant vigilance, I just don't see it coming.

Tuesday the 17th was a difficult one for Boo. I wrote about it <here> But we got through it. I let it go. I don't think he did. Wednesday was different too. It was supposed to be a school day, but I was apparently the only parent who didn't know that there was no school that day. So I got him up and took him to school, only to find the door locked. He was super upset. But we got through it. I let it go. I don't think he did. Tuesday having been my last day of work, Boo and I were able to spend the entire day together Wednesday and Thursday. I had looked forward to it for a long time. Boo was upset because he missed going to Mammo's house. But we got through it. I let it go. I don't think he did. Friday he was chipper and happy going to school. I had made arrangements to take a friend to town after Boo got out of school. This friend attends our church and she is unable to drive, so I had offered to take her with me when I go to Walmart. I picked her up and then went to the school to pick up Boo. But where I failed miserably was I forgot to tell him ahead of time that she would be with me. All that change to his routine, all that upheaval. I should have seen what was bubbling under the surface. I should have known that one more unexpected change to the normal way of things could send him over the edge.

I got out of the car and his teacher released him. He took a few steps toward me with his usual big smile. Then his face twisted up and he started to cry. I asked what was wrong and he said that he didn't want me to come yet. He wanted to wait till Little Britches's mom (the Boo Whisperer) came because he wanted to talk to her. (He pesters her every time he sees her, begging for a playdate) I was working him toward the car but when he saw my friend in the front seat he froze. Then he ran away from the car. In a flash, it was a meltdown. He flatly refused to get into the car. He was wailing, rolling on the ground, screaming, tears running down his cheeks. I was at a loss. I felt torn. Wanting to comfort my boy, who refused to allow me to touch him or to speak to him. Wanting to reassure my friend that this wasn't her fault, regardless of the fact that Boo kept screaming that he did not want her in the car and that he could not get in with her in there. She kept saying we should just cancel, she didn't want him upset, I was trying in vain to settle him and respond to her. Before I knew it, I was in the midst of a minor meltdown myself. (Mommies are not immune!) I was crying uncontrollably, watching my son so hurt and unable to control himself, to stop the fit. I was broken hearted. I was scared. I didn't know what the heck I was going to do. I couldn't leave Boo at school alone. I couldn't leave my friend there stranded. But it was clear that he was NOT going to get in that car with her today. It just was not going to happen. As I stood there having the ugly cry right there in public, (you know, cheeks red, tears streaming, nose running...the ugly cry) my brain froze. I could not think of a solution. My friend kept asking me what she should do, what I wanted her to do. All that my brain would scream (and I do mean scream) was "make my son not Autistic!" Finally, my friend graciously suggested that she go across the parking lot to Pastor's house (Boo's preschool is in our church) and ask his wife for a ride back home. I apologized profusely for the inconvenience and she assured me it was fine, but I felt lower than dirt. I packed Boo into the car and we left.

I made the further mistake of continuing on to Walmart. I felt like I was backed into a corner. I had been putting off the shopping till payday and there were many things we needed. One of them was a present for Boo's friend's birthday party the next day. I hoped he would be fine in the store. And for the most part he was. He never had any total screaming fits or anything. But he was spent, emotionally and physically. I could tell he was very tired. It was all I could do to get him from one part of the store to the next. He was agitated, easily upset. He picked out a gift for his friend within minutes of walking in the front door. But he spent forever in the toy section just looking and playing. I let him take almost all the time he wanted because I knew the day had already been hard on him. But by the time we got to the food section of the store, where I really needed to spend some time, he had used up all his reserves. His nerves were right at the surface. He kept saying that he needed to stop and rest. But he refused to sit in the cart because it hurts his legs. He was alternating between running around like a maniac and refusing to move because he was so tired. I was getting the stare from other shoppers. About a third of me could care less. Another third of me wanted to explain away his behavior by explaining all about autism and what a difficult week he was having. The remaining portion of me? Well, it just wanted to punch them in the face. At one point he found a likely looking spot in the shelving where they were running low on toilet paper and he crawled right in. It was like a quiet little haven in there. I didn't think I would ever get him out!

 

By the time we were done, I had been yelled at, screamed at, hit, head-butted, pushed and pulled all over the store. I had carried Mr. Fifty-Pounds-of-dead-weight-won't-wrap-his-legs-around-me much more then my back was happy with. I was aching from head to toe, emotionally and mentally and physically drained! I couldn't believe it when we got everything loaded into the car and we were ready to leave and I looked at the clock...we had been in that evil store for FOUR HOURS! I figured he had every right to hate me for that bit of torture.

When we arrived back home, I was trying to get the groceries into the house and put away, and he quickly went into another meltdown. This time was triggered when the neighbors were outside and I told him that he could invite them to our house, but he could not invite himself to theirs. (a very difficult concept for Boo that we have been working on recently) My husband ended up putting away all the perishables for me while I attempted to mitigate the situation. This one was worse than the first, if you can imagine. Piercing shrill screams and all. Eventually he got calmed down and he did end up playing with his friends for a while, and they did end up inviting him to their house. He was next door and I was trying to recover myself from the day's events but I just couldn't shake it. I went out in the back yard to sit and relax. I noticed at the neighbor's house I saw Boo in the backyard playing, but no other kids. I asked him where his friends were. He said they were inside. I asked why he wasn't playing with them. He said he didn't want to be inside. In the emotionally fragile state I was in at the time, I took this as some sort of terrible omen. It worried me that he was so content to be all alone, outside the group, not included. I was seeing a future of loneliness and solitude for my precious boy and it rocked me to my core. I sat on my patio and bawled.

Not being able to shake my feelings, I decided that some physical work was just what I needed. I wanted to mow the yard. My husband had to work pretty hard to get the mower running, and by the time I got going Boo had to come home from the neighbors' house. I assumed he was in the house happy with Daddy. Which he was. But what I did not know was that he had decided that he wanted to come outside and play in the yard WHILE I was mowing. When I came in the house he asked me if I was finished and I said yes. He. Went. Nuclear. It was one of the worst meltdowns I have seen to date. He was wild. Violent. Throwing his body around, slapping me, screaming like a girl in a horror movie. There was nothing I could do to help or to soothe. If I tried to speak it ticked him off. If I tried to touch him, same thing. And heaven forbid I remove myself from him when he was beating me up. It just kept coming wave after wave. And I kept thinking my God, he is four years old. What is this going to look like when he is 12? He is already ridiculously strong and able to really hurt himself or someone else. I have got to get a handle on this! I have got to do a better job with him. I have to learn to see this coming! Eventually it just wound itself down. The rest of the night remained tensely calm.

I told my husband later that it seemed like the entire day he was like a guitar string wound too tightly, looking perfectly fine till the moment someone strummed, just like they had a hundred times before without incident and suddenly, SNAP! He replied, "Yep. Contents under pressure." After he went to sleep, I took a long hot bath and cried. I felt so depressed. I felt like his future was grim. Like I had failed him. I climbed into bed that night almost wishing that I didn't have to wake up in the morning. But the night's rest was restorative for us all, and we woke up chipper and upright again.

The coming week on our calendar is ominous. Today we had his friend's birthday party. Monday a school field trip. Thursday the school spring program. (songs and recitations in front of an audience with a microphone!) And next Saturday is Boo's birthday party. Followed by no school the next Monday. So I'm sure that God will forgive me, but if Boo sleeps in or if he just doesn't want to go to Sunday School and church in the morning, we simply won't go. I have no fight left in me. And I don't want my baby feeling like he has to fight the world just to exist in it.

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.

A Hard Day's Night

Boo's Mom works for a franchise of a nationally known tax preparation company. January 2 through April 15 (17 this year) things are very busy in our household. Especially this year, after all the pneumonia, amputation, and cancer decided to show up right in the thick of things and complicate our carefully constructed schedule. At the end of each season the owners of our franchise treat all the employees to a pizza party after we close the office at 8pm. This is one of the things we all look forward to every year. Except that it is late. And Boo does not go to sleep without his mommy!

We were in a bit of a quandary as to how to handle the evening. Daddy has been working odd hours this week and he has to wake up at 3am, so even though he was home at the time of the party, there's no way I could ask him to stay up that late to watch Boo. He is a driver. It's not safe for him or anyone else for him to be so tired. So the question became, leave Boo at Mammo's house so late and pick him up after the party, or have Mammo bring him home (which he HATES, simply because it's not the normal routine) and attempt to get him to go to bed. If we try the latter and he protests loudly, we risk waking Daddy. What to do....what to do....

Our friend K just has a two year old son and a newborn. She works in my office too, and though she is on maternity leave, she came to town for the day and intended to stay for the party. The afternoon was dead at the office, no clients, and K and the boys didn't really have any plans for filling up the last couple hours of the afternoon. So I suggested that we all go over to Mammo's house and let the boys play and the moms relax, and then I could just take Boo with me to the party. I knew this was risky. The party was held at a restaurant that is not on Boo's tolerable list. It was unfamiliar, full of strangers, and unplanned. But with his recent success at another new restaurant, and the comfort of having his friend there with him, I decided to throw caution to the wind.

I might as well have spit into it.

As we left Mammo's house Boo was protesting that he does not like the restaurant we are going to. But I assured him that it would be fine. We arrived and it was LOUD. Full of people seated at several long tables, their multiple conversations talking over one another created a din that even annoyed me. Boo was instantly hyper-stimulated. He couldn't hear my instructions, wouldn't stand still, and refused to sit down. He wanted to sit by his friend, but there wasn't a seat left there. Some of the other employees suggested that we bring another table over and add on. We did, and he was mostly happy. Except there was no acceptable food to eat. Boo loves pizza, but only cheese pizza. He wouldn't even consider anything else! Upon arrival, I had placed an order for a personal cheese pizza for him, but of course it was taking a long time to arrive. I tried to occupy him with playing with my phone, but he wasn't interested. Thankfully, he was interested in the condiment/paper towel holder in the center of the table which he could spin like a lazy Susan. That, and chatting up some of the ladies kept him busy long enough for me to scarf a couple slices. Then they brought out a large cheese pizza and Grandpa (who was there because he works with us too) suggested that Boo eat some. He ate almost a whole slice. He was still "sooo hungry" but he had eaten the last slice of cheese pizza. When his personal one arrived he refused it because he wanted a big slice. He was ratcheting up, and my muscles were in knots. Ironically, as you autism parents are used to, no one else in the room seemed to sense what was so obvious to me. They all were complimenting how cute and charming he was. (which he is, of course)

Minutes later, Boo was very upset that I wasn't ready to go yet. He was wandering around, refusing to sit, refusing to listen. It was late, he was tired, the situation was confusing to him, he was hungry, he was surrounded by strangers and the noise level was intense. He was weaving in and out of the tables, running around, and following his friend wherever he went. At one point, he climbed into an empty booth and then crawled under the table. To everyone else he looked like an undisciplined kid acting up. But I knew he was at the end of his rope, looking for an escape and finding none. I needed to get him out of there. But on the outside he was smiling and laughing, striking up conversations with people he'd never met. I let it go on too long, because I deluded myself into thinking he was fine. And I selfishly wanted to enjoy this celebration with my friends and coworkers, many of whom I will not see again till next January. He was like a body of water with a strong undercurrent that was about to pull him in, but I let myself believe in the calm surface and think we'd be just fine.

Then he wanted to go to the bathroom. Cool, let's go. He went into the booth alone for privacy. But then disaster struck. He noticed a tiny brown spot in his underwear. This was the breaking point. I knew instantly that I was in trouble. I had spare clothes, but they were in the car. I couldn't leave him alone in the ladies room in a public place in the middle of a fit. I got down on my knees to talk to him and tried to explain the situation. Boo, we don't have any other underwear honey. We have to either take these off and go without them, or pull them up. "NOOOOOOO!!! There is POOP on them! I CAN'T!" I tried everything I could think of. He finally allowed me to take them off, but then refused to put his shorts back on. I told him he can not go out into the restaurant naked, it's not allowed. And he can't sit in the bathroom all night. He was wailing. He refused to listen to me at all, or consider anything I suggested. Every time I tried to speak he just screamed louder, as if the sound of my voice was physically painful. I held him close and squeezed him tightly. He kept lamenting "I just don't know what to DOOOO." My heart was breaking because I knew this was my fault. I pushed him too far. I didn't heed the warning signs he gave me. He was past the point of what he could cope with.

I finally was able to calm him enough that I could step out the door and wave a pleading finger at my cousin (who also works there!) and she came to my rescue. I sent her to my car to retrieve the spare clothes. She brought them to the bathroom and we put the clean undies on and the world was at peace once again. But I certainly made a hasty retreat after that. We said our goodbyes and left with the personal pizza in a box. (which he ate within a few blocks)

He fell asleep in the car and slept soundly all night. I was emotionally exhausted too. Sometimes it feels like I'm trying to help him battle enemies that are attacking him, which I cannot see or feel, and which he cannot explain. And I do not like it. Not one little bit.