Independence Day Highs and Lows

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

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

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

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

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

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

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

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

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

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

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

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





Pay No Attention to the Mother Behind the Blog

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

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

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

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

Bye Bye Binky!

A few months ago, there was a furious exchange of texts between Boos Mom and Mammo. The gist of the conversation was "OMG! Elmo is giving up his binky on Sesame Street!!!" We were especially excited about this because Boo was LONG overdue to give up his binky as well. We had worked our way down to convincing him that he could ONLY use it for bedtime, and only while laying in his bed. No mid-day rest time on the couch, no using it to soothe after a meltdown or injury. I comforted myself with the idea that most of the time, once he fell asleep, the binky would fall out of his mouth, so the amount of damage being done to his mouth/teeth was minimal. Of course, I knew this was a giant load of crap, but it made me feel better. Besides, I was making no inroads at all into the idea of giving up the binky completely, and I knew instinctively that this was not a battle I should choose.

Boo has never been motivated by the idea of being a "big kid" or growing up. (With the exception of being thoroughly convinced that he would gain overnight the ability to beat his classmate in a foot race once he turned five.) I had been unable to find anything that would motivate him at all toward the idea of giving up the binky. I approached all the old standby stuff, the binky fairy, taking it away cold turkey, etc. The only one I didn't do was to cut off the tip, because again, I knew instinctively that doing so would produce a bedtime $%*! storm. So Mammo and I watched him watch Elmo talk about this milestone and chewed our fingernails in hope. We hoped that this song would worm its way into his mind like it did ours, and the idea would start to take root.

After I knew he had seen the segment a few times, I started to introduce the idea that someday he wouldn't need his binky anymore. It was a gentle thing. Never asked him to give it up NOW. But I knew his birthday was coming soon. So when I gave him the bink at bedtime I started to tell him that "one day you will be so big that you won't need this anymore." I left it at that. Then after a while, I mentioned that babies use binkies and big kids don't, and one day he would be big enough not to need it. Every time I used this sort of language I used it while giving him the binky so that he didn't feel that he was being pressured to let it go now. Just trying to get him thinking about it. It's all baby steps! After a while, I tried applying a time stamp to this concept. I suggested that when he turned five he wouldn't need the binky anymore. That's when I started to see resistance, so I backed off a bit. I didn't talk about it every night, but did mention it a few more times. But the resistance got stronger, so I stopped talking about it. The last thing I wanted to do was create anxiety surrounding his birthday and suck the joy out of turning five. So I stopped talking about it.

Then, the night before his birthday, I got ballsy brave. As I handed him the binky, I reminded him that the next day he would be five. I then simply asked him "So what will that mean tomorrow night?" To my astonishment, he replied "I won't need my binky." He was so matter-of-fact about it. I was stunned and proud. But also, I knew better. I knew there was no way it was going to be that easy. The day that he officially turned five was a big and fun day! By bedtime, Boo was exhausted. I took a deep breath, and when he asked for his binky, I reminded him that he was five now, and therefore did not need it. He began to cry and beg, but not as badly as I anticipated. We managed to compromise by allowing him to use it while we read books, and then put it away for sleep. So on his fifth birthday he fell asleep without the binky. He did cry about it a bit, and asked for it several times. He told me repeatedly that his mouth was uncomfortable. But he fell asleep.

The next night, I refused to give it to him during book time. I explained that now that he is a big kid, the bink, which is made for babies, can damage his teeth if he continues to use it. This threw him for a loop. I could see he was really considering that. He did not like the idea of any "damage" to his body. We somehow managed to get through bedtime without much credible resistance. It helped also that once again, it had been a big day, and he was extra tired. Over the next week, his requests for the binky quickly dwindled. It didn't take long for him to quit mentioning it at all. When he did, he insisted that his mouth was uncomfortable, and asked me "what am I going to munch on?" But it never once came to the point of a meltdown, or even a credible threat of one. Not even so much as a tantrum. I was stunned. I made one facebook post about it on the night of his birthday, but other than that I maintained public silence on the issue. I didn't want to press my luck, or to eat my words. I wasn't sure this would hold.

I hid all the binkies in my sock drawer where he would happen to see him and be reminded of them, but where they would be easily accessible in the event of a middle-of-the-night binky emergency. I haven't taken them out since. Every week or so Mammo would tentatively ask me "is he still going to bed without the bink?" Yep! We were both proud and amazed, but also kind of waiting for the other shoe to fall. Well, tonight will be the 25th night in a row that my Boo goes to sleep with nothing in his mouth but what God gave him. I didn't think I would ever see this day happen. I'm so proud of Boo, and so thankful that I was so lucky.

How about you? Did you/your child have difficulties giving up certain aspects of baby-hood? Share your stories with me!

Boo's First Dentist Appointment!

Boo is extremely orally sensitive. He always has been. Keeping his teeth brushed has always been difficult, and if I am really brutally honest, I haven't always made much of an effort to even try. I know, I know, so don't bother lecturing me. Back when he was almost two I had started the process of finding him a dentist, but before he ever had an appointment I suddenly got laid off from my job and poof, we had no insurance. Fast forward three years and there he is happily jumping away in the bounce house in our back yard at his fifth birthday party. Then suddenly he is wailing and running to me. He had somehow fallen face first into another kid's back and hurt his mouth. He was very upset about it. Later after the excitement was over he again complained about his mouth. When I got a better look, I saw that one of his bottom incisors was missing a big chunk of enamel! Uh oh.

The very next business day I started calling around for referrals. I needed a dentist who "gets it." I wasn't about to just pick someone out of a phone book. I checked out the website of one of the practices that was recommended and fell in love. I called to set an appointment and of course, they had no openings until October. Five months. I took it, and hoped that we wouldn't experience any trouble before then. Monday afternoon I got a phone call. It was the dentist office. They said that they had a cancellation and they would like to offer it to Boo. Great! When? Tomorrow! I had less than 24 hours to prepare my son for his first ever dental visit! But I knew I would be a fool not to take the chance. So Tuesday afternoon Mammo came over and we all got in the car and headed to town, fingers, toes, legs, and eyeballs crossed.

I had showed Boo the website. Showed him the pictures of the reception desk, waiting area, and treatment areas. The home page had a monkey hanging from a tree and brushing its teeth, which Boo found hilarious. I also showed him pictures of the doctor he would be seeing. I told him that if he let the doctor count his teeth, he could choose any reward he wanted. I prepared myself to shell out twenty buck I could ill-afford for the much coveted wall tracks expansion, but Boo announced that for his reward he would like to have reece's pieces. He was thrilled to play in the waiting room, but as soon as his name was called, he morphed into Clingy McScreamerson. I carried him down the hallway to the exam room. Instead of dental chairs, they simply have small beds that lay flat. He refused to even consider sitting on it. He was trying to climb inside my skin. But then he noticed something on the ceiling. A TV was mounted above the exam area, pointing straight down, and on it was playing Despicable Me! How cool is that? He asked about it and the girl showed him a set of wireless earphones. Of course, he refused to even consider wearing them, but I feigned excitement and put them on myself. Hey! I can hear the movie! He still didn't want to wear them so I set them down and pretended to ignore him while I answered questions and discussed his history and my concerns with the assistant. Before I knew it....

He had the headphones on. This, they boy who has literally refused any attempts to put anything on his head (except his hoodies) since birth, was wearing headphones. I pretended that I didn't even notice, and continued talking with the assistant. Next thing you know...

He never really got all the way up on the exam bed, but he was close. He did sit on it at one point. I simply never made a big deal out of it. He then started messing with the buttons on the headphones and soon they weren't working right. I put them on and I was hearing a different movie. I told the girl that they were playing Cars. Boo got excited and asked if he could see Cars instead and she changed the movie to Cars. They chatted a bit about his love of Lightning McQueen, and next thing I knew, she grabbed her tiny microphone hanging from her tiny earpiece (think Hollywood Secret Service), pushed a button, and said "can you get us a bag with a Lightning McQueen toothbrush please." And POOF, another lady appeared in the door and handed over a small bag containing said toothbrush, some toothpaste and some floss. Boo was totally excited by the toothbrush. Then the girl started talking to Boo about all the special tools they use and asked if he wanted to check them out. She presented him with a small dental mirror.

He took it from her, checked it out, and told her "this reflects whatever is in front of it," and then used it to watch Cars on the ceiling. I was equal parts amused and amazed by their exchange. Soon after that the doctor came in. They chatted easily. After she and the assistant conversed briefly, she showed Boo her special glasses with magnifying glasses in them. He was enthralled. She asked if he wanted to try them, and I almost feel out of my chair when he said yes.

He didn't wear it long. As she and I talked at length, Boo noticed the dental light that was hanging down from the ceiling. This what where they REALLY impressed me. They let him play with it to his heart's content, switching it on and off, moving it all around, barely even reacting when he kept shining it directly in the doctor's eyes by accident. This kept him distracted while she discussed his diet and oral hygiene habits with me, recommending some products that could help protect against cavities, and giving me absolutely no pressure about the nature of his eating habits and the rarity of his brushing.

After that, she showed him her blue gloves and let him watch her put them on, and feel the texture of them. Then she showed him her mask, holding it in front of her, then explaining to him as she hooked it over her ears, then pulled it up to cover her mouth and nose. She then put on her glasses again and let him get comfortable with the way she looked.

He never did allow her to touch him, and she never pushed the issue. She gave him a hand-held mirror and asked him to look at his own teeth, and she got as good a look as she could while he did so. I then reminded him of the promised reward, and the dentist mentioned that she had an airplane she could give him when he was done. He zeroed in on that airplane idea. I told him if he wanted to earn his reward he had to let the doctor look at just one of his teeth. He was sitting in my lap facing me, and I turned my back to the doctor so she could see him. I asked him which tooth the doctor could look at. He opened his mouth wide and pointed to one way in the back, which gave her another peek inside the mouth. He then clamped shut and totally shut down, trying to climb inside my skin once again. It was apparent to me that he was done. That was all the cooperation we were going to get out of him that day. To my amazement, it seemed apparent to the doctor as well.

She then told me that she was totally happy to stop at that point and call it a successful appointment, and try to get a little further next time. She said that she had gotten a pretty good look at the chipped tooth and was not concerned about it. She also got a look at some of the molars and said she was happy with them, and didn't see much plaque or anything that concerned her, which astounded me. She also blew me away when she mentioned that they are working on creating a social story for their practice, including pictures of all the areas and pictures of both the doctors in the practice wearing their "gear." We discussed our plan for going forward and decided to try again in three months and see how we do. She also said that they have a lot of parents of "spectrum kids" who simply stop by when they are in the area sometimes, just to have another pressure-free, stress-free point of contact with the kids to build positive experiences and memories. The entire time we were there I felt as though they had all the time in the world for us, and more compassion and understanding than I had ever dreamed.

Boo indeed received his promised toy plane, and though he left the office in tears (because we didn't have time to play in the waiting room some more) once we were on the road and I asked him what he thought of the dentist, he cheerfully announced that it was great! He was looking at the package the plane came in, and it showed six different models. He said he wanted to get a different one next time, and he wanted to get one every time till he has them all. Sounds like a plan to me, little man! I couldn't be prouder!

The Haircut Post. My Epic Parenting Fail.

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

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

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

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

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

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

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

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

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

The Three Food Groups

Getting Boo to eat is a struggle.

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

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

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

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

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

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

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

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

Meet My Friend Maple

This is "Maple."

A few weeks ago, while playing at Mammo's house, Boo stumbled upon what has become one of his best coping tools. This simple unassuming character used to be a knee pillow for Mammo. It is made of memory foam, and was originally covered with a removable pillowcase. Boo discovered the zipper on the case, opened it, slipped his hand inside, and fell in love! He oooh'd and ahhh'd and marveled at the feel of it. He quickly removed the pillow case and proclaimed "I like how this feels, Mammo. I could just feel it all day." That evening he brought it home with him, and it has been his companion ever since.

He likes to get it out when he needs a bit of extra sensory input or when he feels particularly upset. He likes to squeeze it, smoosh it, push it into his chin, and hug it. Suddenly this morning, he began doing something new. He suddenly decided to anthropomorphize it! He gave it the name "Maple." He started giving it drinks of his juice and bites of his cereal. He began talking to it. He asked if he could take it to school. Considering the recent difficulties he has had, I thought this would be an excellent idea. I told him that he would have to leave Maple in his cubby during school, but that if he started to feel sad or upset or nervous, he could ask Mrs. K for a few minutes to "squeeze maple." He was excited about this plan.

When we arrived at the classroom, Boo was thrilled to show every classmate, Mrs. K, and several of the other moms his new find. He walked up to each of them and announced "This is my friend Maple. I like to squeeze him when I feel sad or nervous." He then stowed Maple in his cubby and sat down to stretch rubber bands onto a pegboard with his classmates. I was astounded at the change since last Friday! He never once argued with me about going to school. He never gave me a moment of trouble. Apparently he had a bit of trouble following the rules at school, but he didn't seem overly concerned about it. (usually all it takes is one stern word from the teacher to send him home broken hearted and declaring his hatred for school)

Tonight we had our first family BBQ of the season. (My family on my dad's side have a tradition of getting together one night each week during the summer for a BBQ/potluck meal, and it's one of my absolute favorite things about the season!) Boo didn't want to go, of course. He never does, though he always has a great time once we get there. To make matters worse, Dad made the cardinal mistake of starting an episode of one of Boo's favorite shows (Billy the Exterminator)  just before time to leave, without enough time for Boo to finish the episode before we had to leave. Because he was already starting a fit, I figured I'd better toss Maple in the car too.

Surprisingly, I didn't have hardly any trouble from Boo the entire evening. There was one moment, when it was time to eat, that he started to put up a fight. I suggested that he might want to go get Maple out of the car. He said no, then immediately huffed to the car and retrieved it. He then proceeded to introduce it once again to everyone present as "my friend Maple." He then set it on the table, and never again picked it up till we came home. He never gave me another moment of trouble the entire evening. So, while Maple may be a friend to Boo, he has suddenly become MY bff!

Update: A couple days after writing this blog post, I was watching Spiderman and his Amazing Friends with Boo. He watches episodes of this series by himself frequently. The episode we watched had a story of a lonely old man who was accidentally given special powers to make anything happen that he wanted. One of the first things he did was create for himself a friend who would never leave him. The friend was a cat, and it's name was Mable. Light bulb ON!

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.

Balancing Act

Last night after Boo went to bed, I spent some time reading through the MomNOS blog. It been a favorite of mine for some time, and I am in the process of reading it from beginning to end. One post in particular really resonated with me. It was about the importance of sensory integration activities, and the signs that the child's sensory needs are not being met. I gave this a lot of thought, especially the concept of "Push, Pull, Lift, Carry" that was mentioned as being the keys to sensory regulation. I recognized that Boo has been under-stimulated sensory-wise the last several days. My mom has described this as "it was a rough-and-tumble day." I have noticed Boo having decreased ability to self-regulate, to attend and focus, to be still, and to listen and comply with requests or instructions. He has also been climbing into bed with me in the middle of the night, pushing so closely up next to me and even sticking limbs under my body, that I nearly end up shoved out of bed. This was something that was mentioned by MomNOS as well. So today, I focused on trying to get those needs met. Before church I asked Boo to carry his bag across the parking lot. The Boo bag is a large canvas bag with his name embroidered on it, which holds spare clothes, snacks, toys, books, and the requisite disposable cup in case of a public bathroom emergency. It is quite heavy and he enjoys carrying it on his shoulder just like Mommy. He had a very hard time being good during church. After church I took him to Grandpa's house to play while I went home to mow the lawn and then went to a mother-daughter program at church. When the weather is nice he likes to spend most of his time at Grandpa's house outside on his tricycle, riding all around the yard. The terrain is very irregular and I figured the activity would be good for his sensory integration. Hours later we went home and Boo watched a video for a while and ate some supper. Then he was climbing all over the furniture, hanging upside down, acting rambunctious. He got out his "Mr. Blue Ball," a large blue rubber ball that my mom got him so he could use it to sit on while watching TV to help develop his core muscles and balancing skills. (something she read in a book on sensory integration dysfunction) He was enjoying sitting on the ball, but quickly got out of control with bouncing on it and then kicking it in the house. Desperate to harness his energy, I decided to pull out something we hadn't tried in probably nine months. I got out the sit-n-spin. He was excited about it at first, spent a while using it appropriately and really enjoyed it. I took a picture of him on it and he noticed me doing so. That distracted him completely. He came up to me and raised one foot in the air, asking me to "take a picture of my stinky foots." I did and showed him to it, which delighted him. Then he got on all fours and put his head down and asked me to take a picture of that. I remembered that his teacher had told me last week at parent-teacher conference that he would not attempt a forward somersault. I took the opportunity to work on it in a low pressure environment. I helped him get into position and showed him how to push over. He thought it was fun a few times, then he wanted to watch me do it. Believe it or not, at my age I can still do a somersault! But after three, I dared not do it again. For whatever reason, Boo had decided to go down the hall and hide in his bedroom with only his head sticking out into the hall to watch me. When I told him I was done somersaulting, he ran down the hall full speed and crashed into my open arms, knocking me backward. He often does this same activity, only crashing full speed into the couch instead. I decided to use the activity that seems to fulfill a sensory need for him. I gathered up pillows and piled them on the floor behind me and then held two large pillows in front of my body and head and encouraged him to run into me with the pillows. He really embraced the game, squealing with sheer delight as he ran, and laughing with joy as he pushed me down. We played this game for probably 20 minutes. Then he decided it was MY turn to run, and he positioned himself among the pillows, put two in front of himself, and giggling, told me to "go." I jogged down the hall, fell to my knees in front of him, and used my arm to push him backward into the pillows. When he tired of that activity, he just went craaaazy! Throwing hotwheels, spinning the sit-n-spin with his hands as fast as it would go, waving the sit-n-spin's "steering wheel" around in the air like a magic wand, running, crashing, etc. I tried to get him to take a bath, which is an activity he loves and usually relaxes him. He insisted he did not want a bath, but he did ask for some computer time. By then it was 8:00 and I intended to have him in bed by 8:30. I was hesitant to allow computer time because it is so hard to transition away from it when time is up. But I glimpsed an opportunity and grabbed it! I told him that he could have 30 minutes of computer IF he would brush his teeth. Tooth brushing is one of our biggest fights. He HATES it with a passion. He doesn't like the way it feels. Especially on his upper molars. There have been a few small seasons when it wasn't much of an issue. He still didn't like it, but would allow me to do it. But whatever technique seems to be working will wear thin in just a few weeks and we are back to an ineffective wrestling match. Because of this, I am ashamed to admit how poor of a job I have done at insisting that it gets done. I was pleasantly surprised when he ran to the bathroom and pulled his toothbrush out of the drawer. I had bought him a Thomas SpinBrush a while back. His occupational therapist had suggested a vibrating toothbrush to "desensitize" him to brushing. He took out the brush and did a fairly good job at cleaning his teeth. He was hesitant to do his top molars. Since he was so agreeable, I asked if I could help him, and he let me brush his teeth also. When I did it without pushing the button, he requested that I "tickle" his teeth. I got a good brushing done on the bottom and the fronts, but when it came time for the top he became antsy and implored "not on my skin!" When computer time was up, I was shocked by the absolute fit that ensued. Tantrum doesn't even begin to cover it. I have not seen a meltdown of this magnitude for months! I had been in hopes that all the sensory integration activities would help him to regulate and to calm. But just the opposite happened. So I am thinking that perhaps I overdid it. Perhaps it was too much in one day. Maybe I swung the pendulum to the opposite side, with the same result. I will have to work at finding that delicate balance between under-stimulated and over-stimulated.