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.

On Thomas the Tank Engine

Thomas has been a staple in our house for well over three years now. On Boo's second birthday he received a starter set of "trackmaster" tracks and a couple engines. From that point forward most days have found our living room half covered in some configuration of tracks, bridges, tunnels, and stations. We watch the show on TV and we have several videos and books. Boo has memorized pretty much every plot, and most of the dialog. He re-enacts these on his track set. He has most of the major characters, but is willing to substitute one engine for another if necessary. This is one of his major ongoing preservations that ebbs and flows but never really fades.

Last year I had the opportunity to attend a lecture given at a nearby medical school campus by the developmental pediatrician who diagnosed Boo. She spoke on the subject of autism. The content was pretty basic, and while I didn't really learn anything new per se, I enjoyed hearing her perspective as a clinician. After the lecture there was time for Q&A and that was really the best part of the whole thing. I remember being struck when she commented that a great many of her autistic patients have a fascination with Thomas. She commented that she found it interesting that these children, who have such difficulty with effectively communicating emotion both receptively and expressively seemed to feel most comfortable with these characters who have faces that do not move. (This was before the popularity of the newer CG version of the Thomas show.)

For some reason, of all the things that were discussed there that day, this one idea stuck with me. I found it interesting, but it just didn't feel correct somehow. I couldn't put a finger on it, but it just stuck. Kind of like a piece of popcorn hull stuck down in your gums. And then a while back it struck me suddenly. I knew why she was wrong. At least for Boo. I can't speak for all the other spectrum kiddos out there who love the little blue engine. But for my Boo, the reason why Thomas is so comfortable for him, so easy to watch and respond to, is because of one simple thing. It's narrated! He doesn't have to work to understand context or implication. He doesn't have to figure out what a character is feeling or thinking, or what motivates his/her actions. The narrator simply tells you all that. He is not left feeling confused about what is happening and why. He doesn't have to ask incessant questions and feel bad when his parents get annoyed. He can just relax and watch and it's all explained to him. I think this is also why he responds so well to Word World.

I watch him play and interact with the world. He narrates everything he does! He talk non-stop. He explains every. little. thing. down to the last detail. Sometimes it can make me crazy. But having an understanding that this is a tool he uses to make sense of his world, to make order of the chaos, helps me know how to help him. And it gives me patience. And I find myself narrating things for him without even thinking about it. Because he does not understand sarcasm, implied humor, or subtlety. So when something happens around him that I know he won't understand intuitively like others do, I tend to explain it before he even has to ask. It helps to limit frustration on both our parts.

What about you? What do you do to help yourself or your child navigate the world a little easier? What are some of your best tools?

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!"

Me Times One Thousand

We are all autistic.

Bear with me, I can explain.

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

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

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

2. Everything has to be done my way.

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

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

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

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

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

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

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

Thinking and Being

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

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

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

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

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

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

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

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

And Another Thing...

I got another insight tonight. Background: Boo was very hard to potty train! In fact, I was concerned that it might not happen in time for him to begin school last fall. He still refuses to even attempt bowel movements in the toilet. And although he does urinate in the toilet, he doesn't like it. He holds it for amazingly long periods of time, to the point that it concerns us. He also has an extreme terror of public bathrooms. We have discovered that at some times, on good days, we can convince him to go inside a public bathroom and "potty in a cup." Any cup will do, as long as he isn't asked to use the public toilet. I have noticed that the toilet seats that are split in front, not complete rings, bother him the most. In fact, one look at them will usually cause an instant screaming fit. He also has expressed some anxiety about loud flushes.

This brings me to another of Boo's sensory issues. Loud noise. He has a love/hate relationship with loud noise. Some times he loves it, seeks it, creates it. Sometimes it really seems to bother him. He seems to have trouble filtering the relevant sounds out of the background noise, especially in very noisy places like public crowds. He will seem to not even hear me at all, no matter how loudly I call to him. This coupled with his refusal to hold hands (another sensory issue) has caused some difficult moments, to say the least. When he was little, he loved his jack-in-the-box, but he was afraid of the moment that it "popped." He would run out of the room as far away as he could when it was about to pop out of the box. After it was up, he would happily return. He has always hated the vacuum cleaner, usually running to his room and closing the door when I vacuum the carpet. When he plays games on the computer he will sometimes run around the corner to the next room when he encounters a very noisy part of a game. But he will return to play the same game again and again, running away for the noisy part each time.

Today we barely got Boo into a public bathroom at the zoo. He did not like being in there at all. He barely consented to stay in the stall long enough for me to use it. I knew he hadn't gone to the bathroom in several hours and didn't want him to keep holding it much longer. I didn't have a cup with me today, so I offered him one of our water bottles. He agreed to that, and suddenly pulled his pants down in such a way that I knew he was really feeling the need! He used the bottle happily and we got back on our way to the animal exhibits.

We spent quite a bit more time at the zoo after that, then went to McDonald's for lunch, and then Boo fell asleep on the way home. He ended up sleeping about five hours! Holy cow! Even after he woke, he didn't go, didn't go, didn't go. Finally, after it had been around 8 hours since our trip to the bathroom at the zoo, I insisted he go. This began an epic fit. He flat refused, said he didn't need to go, he didn't want to go, screamed, cried, begged. I kept asking him "why" and he could only answer that he didn't want to, or didn't need to. I ended up sitting on the bathroom floor with Boo in my lap, squeezing him in a tight hug and rocking side to side. It dawned on me to ask "what would happen if you did potty?" His answer? "It would be too loud!" Heaven's sake! I had no idea that he was bothered by the sound of using the toilet! I offered him a cup, something that we have never done at home, and he happily filled it, then went on to the next activity. Go figure.