River Bend Mini Farm

Grams and her little dog



When I was 11 months old, my parents moved to a new city four hours and one state line away from my doting grandparents. It was a move that wasn't easy on anyone, least of all me. I have an unusually strong bond with my all my grandparents, and especially with Grams, my maternal grandmother. Consequently, until we moved back when I was 15, I spent most of my summers and school vacations "back home" with my grandparents. Even as a very young toddler, the phenomenon of "homesickness" was very real and very literal for me. I would miss my grandparents so much that I would become literally physically ill. My mom would call Grams and say "the baby's homesick for the farm" and they would make arrangements to meet each other halfway and swap me. And just like that, almost magically, I would recover. I continued to make regular visits back "home" even when I was school age.

I have distinct memories of spending the weekdays with my maternal grandparents. My Gramps had to wake very early in the morning for work. Before the sun was even up. I would wake shortly after him, and I sat in the kitchen with him. He drank coffee and I drank milk. He poured my milk into a yellow cup with Mickey Mouse ears for the handles. I would sit with him and look out the window at the fields. Soon he would tell me I should go back to bed, and I would. Later when I woke again at a more reasonable hour, I would crawl into bed with Grams and wake her up with a kiss on the cheek. (Only years later did I learn that she pretended to be asleep till I came in to wake her) Then we would go to the kitchen and she would make me breakfast. Usually cream of wheat. We spent our day doing all the things that homemakers and little girls do. We shopped, played, cooked, played some more, talked, and pulled sticker weeds out of the yard. My Grams could spot a sticker plant at a hundred yards! I spent long hours outdoors, exploring all areas of the farm. When it was summertime, my cousin who lived nearby often joined me.

In the evenings, Gramps came home from work and I would join him doing the chores. First thing we would do was turn on the faucet and haul the garden hose across the circle drive to the cattle pen and toss it into the stock tank. I remember the look of the "tracks" that were left in the sand where the water sloshed on the sand driveway as we walked then dried quickly in the hot summer sun. Then we would make the rounds feeding all the animals. Gramps's menagerie was fluid. Meaning, the types of animals he kept changed frequently. The core group consisted of cows, horses, chickens, peacocks, geese,  pigs, and a donkey named Jack. At various times I can also remember there being rabbits, guineas, ducks, goats, Shetland ponies, mules, curious beasts known only to me as "barbie sheep," and even emus. With the exception of the pigs, no real attempt was ever made to profit from the animals. Newcomers to the "River Bend Mini Farm" were often puzzled by the curious combination of creatures. When they asked Gramps what he did with all these animals, Gramps answered simply and earnestly, "I feed them."

When the chores were done, we would drag the hose back across the drive and stand in the yard drinking from it. For some reason, water was always the most refreshing when it came from a garden hose. After that, it was back in the house to wash our "front feet" and sit down for supper. During supper we always watched the news, and then Wheel of Fortune on the kitchen TV. As the sun went down we often sat outside listening to the toads and cicadas making their summer melodies, and watching lightning bugs dance over the lawn. When the day was through, Grams and I would "tuck Gramps in" to his bed, set his alarm clock, and kiss him good night. Then we would go the the kitchen and spend some more girl time together before hitting the sack ourselves.

There is something about being with my grandparents that puts my soul at ease. It's a quality that can't be grasped, understood or explained, but only experienced. And after years of being with them on that farm, now the farm itself is imbued with the seemingly magical power to calm, soothe, and relax me. In all the world it's the place I feel the most centered, the most at peace. In 2003 when my step-daughter was killed in a car accident, I spent months longing for the farm. I felt a pull toward it. I needed to walk along the dike next to the river, wander among the trees, and allow myself to grieve.

Gramps received his eternal promotion in 2008, and since then the farm has changed. Most notably there are no more animals, save Grams's little schnauzer dog. But the one thing that hasn't changed, that will never change, is the magical healing power of the River Bend Mini Farm. And that is one thing that my Boo seems to share with me also. When things are spiraling out of control and we just can't get a handle on it, he almost never turns down the suggestion of a visit to Grams's house. Boo and Grams have enjoyed a special bond from literally the moment of his birth. (Which is a whole story for another post!) They are each other's best medicine. They "get" each other like no one else does.

Yesterday afternoon we spent a few hours on the farm with Grams. We chatted. We played. We caught butterflies. We sat on the porch swing. (A porch swing is pure spiritual salve!) We had the freedom to just be. There was no pressure, no expectation, no chaos. Just the pure peaceful medicine of an afternoon on the farm. We both came home feeling happier! And we hope we left Grams feeling the same way.

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!"

Cupcakes: A Step-By-Step Guide, With Pictures

How to make cupcakes

Step 1: Empty the bag of cake mix in the bowl.

Step 2: Touch and feel the part you spilled on the counter. Investigate the sensation.

Step 3: Carefully measure the oil and water, and add them to the bowl. (Boo did all the reading of the instructions on the box, figured out by himself to which line he needed to fill it, poured slowly and stopped at the exact right moment. I was stunned.)

Step 4: Take out an egg, tap it against the edge of the counter, and gently pull apart.

Be careful not to get any shell in the bowl.

Poke a finger into the yolk and see how it feels. (Boo cracked all three eggs completely unassisted and didn't make any messes. He didn't even break any yolks. Well, not while cracking them anyway.)

Step 5: Having add all the ingredients, turn the mixer on speed number one. Be sure to move it all around the bowl. When it touches the sides, it will feel very bumpy! (Mom may have to finish the last minute because too much of that bumpy feeling is uncomfortable.)

Step 6: Line muffin tins with baking cups. Blue of course. (Is there any other color?)

Step 7: Use a large spoon to scoop batter into each baking cup. Each one gets three scoops.

Step 8: After mom sets the pans in the oven, set the timer for 15 minutes. Then spend that time playing PBS kids on the computer and eating wavy cut potato chips.


Tomorrow is the big day! Boo's birthday party! I will try to get party pics up soon, but I'm betting I'll be too pooped to do it tomorrow. LOL Wish us luck!

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.

Little Britches

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

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

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

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

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

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

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

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.

Being Neighborly

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

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

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

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

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

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

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

Thinking and Being

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

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

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

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

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

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

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

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

Tenebrae

Tonight I took Boo to the Good Friday Tenebrae Service. If you have never attended one of these, I highly recommend it! It is possibly my most favorite service of the entire year, right up there with Christmas and Easter. The goal of this service is to punctuate the seriousness of our sin and the importance of Christ's sacrifice, as well as communicating the emotional state of Good Friday. It is certainly not a joyous feel good service, but it is one of the most moving. It stirs me to the depths of my soul.

One of the main aspects of a Tenebrae Service is the quietness with which the service is conducted. And at the conclusion everyone is supposed to leave the sanctuary and the church in silence, without greeting one another. This was quite interesting because telling Boo not to talk is like telling him not to breathe! When he is awake he is almost constantly talking. He prattles incessantly. At church the best we can usually do is to get him to whisper, but even that is more of a stage whisper. Normally this is not an issue, as his sound is drowned out by all that is happening in church. But tonight, the stillness and the silence and the darkness in the sanctuary was an altogether different experience.

The alter and pulpit were clothed in plain black, and all the beautiful golden crosses and adornments were absent. The large wooden cross which stands at the front of the church during lent was draped in black and topped with a thorny crown. At the start of service there were lit six simple white candles and in the center one larger candle to represent Christ. Near the end of the service, Pastor began reading the Passion story from the book of John. The reading was split into seven sections, and after each section, the congregation sang a verse of the hymn O Sacred Head Now Wounded and then one candle was extinguished and part of the lights were turned off. After the last reading, all the lights were off and the center "Christ Candle" was removed from the sanctuary. Everyone sat in silence considering the story they had just heard. Then a loud noise reverberated through the sanctuary, symbolizing the sealing of the tomb. After a few moments, the Christ Candle was returned and just enough lights turned on to be able to see our way out. Everyone rose and left the church in silence. That silence was more piercing than the loudest sound I ever heard. I left the church with the most solemn and reverent feeling.

The post that I had planned to write for today seems somehow unimportant. My heart and mind are focused on the bitter sacrifice of my Savior. My sincere plan for you this Easter weekend is that you would have not only a knowledge of the events we celebrate, but by the Grace of God that you would have a saving faith. Jesus gave himself up for us, even when we were still in our sin, that we might have a relationship with God and be granted his Grace and Salvation. Only by faith in Jesus can we receive this free gift. Let us focus our hearts on the Love of the Lord this weekend. Because bunnies and eggs are fabulous fun (and we shall enjoy them) but empty tomb of Jesus that first Easter morning is the greatest joy that has ever been known to mankind.

Hallelujah, He is risen indeed!

Family Night

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

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

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

Being Aware

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

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

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

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

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

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

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

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

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

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