Birthday, Bah Humbug

It's John's birthday. He has high expectations. He's cognizant enough to have been counting down to this day for weeks. Because of that, at 9:30 am, I'm already writing about how miserable everyone in the house is.

I got up this morning and had a delightful run. My thoughts were preoccupied with a blog post about how I didn't even know John was being born twelve years ago, but I was already being prepared to be his mother in very important ways. I was going to reveal what a blessing it is to know and love John and how he has stretched me and challenged me in ways no one else on this planet has. He has helped to uncover parts of my character I'd rather not address and might not have recognized without him. He has shown me strength and faith I didn't know I had. He needled his way straight into my heart the first moment I laid eyes on his impish smile and his little bald toddler head.

But then the day went a completely different direction. I popped back in the house with a smile in my heart and plans to pour out affection and sweet words on my son. But he was edgy. He was rude to his grandmother. I could hear agitation in her voice. And she's normally very understanding and patient with him. He refused to do his normal morning routine and he had also thrown a spoon at his sister. He absolutely would not apologize because he didn't hit her, the spoon did.

I put on my understanding, Aspie-talking hat and went to nip it in the bud. I'm not exactly sure why his typical antics flew all over me this morning. It may have been because he was so utterly rigid in the face of something so simple and necessary as a little consideration. (Yeah, I know, I wasn't thinking Aspie, right there.) It may have been that I had built the day up a little too much in my own head.

I screamed and I cried. I bawled for the loss of that lacy-edged vignette I had enjoyed during my run. I cried out to God. I had myself a neuro-typical meltdown. I kind of understand the release it brings. I furiously texted two wonderful, godly friends who helped me think it through.

John had been Disneylanded.

When he was younger, Theo used to say that John was allergic to fun. If he found out we were going to do something fun, he seemed to do everything in his power to sabotage the experience, even though it was something he wanted to do. Disneyland is a supreme disappointment to him. He builds it up in his mind and wants it to be utterly perfect, expects it to be so.

Then he is devastated when the temperature is hot. There are lines. The music on the rides is loud. The food vendors don't all automatically serve everything magically gluten free. And there are lots of people EVERYWHERE. Sights. Smells. Sounds. Disneyland (without proper planning) is a recipe for overstimulation and the let down of reality in what claims to be "The happiest place on earth."

I thought I had prepared properly for this birthday. I prepared him to expect a normal school day to maintain a routine, but I had gotten that motherly twinkle of excitement and decided to let him pick all three meals for today and planned to have some fun projects and make school just a little bit special with a video during history and some board games during math.

In the meantime, he had some birthday twinkling of his own. I think he planned on this being the "Happiest day on earth." I believe he imagined no responsibilities, delicious food, the freedom to choose his own everything, everyone would be nice to him, he wouldn't get in trouble, he would be showered with affection and his little sister would not dare to do anything annoying.

Reality wasn't nearly so awesome. I knew to expect this to a certain extent. That's why I tried so hard to find a way to make it fun while not taking him out of routine too much. That's where I went wrong. I should have done everything in my power to make it as mundane as possible while still acknowledging it is his birthday. Since his brain was already at Disneyland, I needed to make his real world more like a rainy day, curled up with a good book.

I learned a long time ago (and have to relearn from time to time) that John is the worst predictor of what will bring him happiness. It was too much pressure to have him choose three meals. The truth is that I would have picked something similar with him in mind but it would have caused him less stress. After the day is done, he'll still be mulling over how the day might have been better had he chosen grilled cheese rather than cheesy bbq fries for lunch. I should have spent less time planning special projects and more time reassuring him that things would be the same despite it being his birthday. I should have given him a written list of what to expect and what was expected of him.

After my tantrum, John seemed relieved instead of appalled. I guess I expressed outwardly what was going on inside of him. We aren't playing Yahtzee during math, he's doing a set of electronic worksheets and I hear him humming, relaxed. I'm giving him some space so he can work in peace. And the girls are taking a lovely bubble bath and behaving like it's a special day in his stead.

I'll read him this blog post later while I tear up. He'll listen raptly and rub his face and say something like, "I love you, Mom. Sorry you got upset. Can I have some grapes?"

I'll say "Yes, you can eat the whole bag. I bought it just for you."

He'll be thrilled! And then he'll complain how it was really just a small bag of grapes so he's still hungry. And then I'll know we're back to normal and I can stop freaking out about the fact I had a meltdown earlier.

Happy Birthday, John. I love you so much. Now, get back to work.

The Walls of Our Hearts

It's been a hard few weeks. I don't know which of John's official diagnoses are accurate, relevant, all part of the same thing or which he seems to have recovered from like Reactive Attachment Disorder. Certainly the label of Aspergers Syndrome has been quite helpful in helping our family communicate with each other. I only mention his alphabet soup list of disorders (Bipolar, OCD, Written Expression Learning Disability and Sensory-Motor Disorder on top of the aforementioned AS and RAD) to say regardless of what those mean, you can tell he's got it rough.

Sometimes we experience what I call an emotional death spiral. This has been one of those times. There's been prayer as well as avoiding God on my part. I find myself realizing I'm very fragile. I post (on Facebook) or tell the medical health professionals that I'm have a very hard time, Hannah's having a hard time, we all are getting sucked into the black hole and I usually get a lot of very flattering commentary that I'm exactly who God ordained to be his mother or "Sounds like you are doing all the right things!" in a little doctory sing-song.

The truth is that we aren't drowning. For all of what is going on with John, we are actually doing well compared to others. But, wow, I feel like I've been treading water for a really long time and I'm pretty tired.

Thanks to some intimate talk with a dear friend, I realized I was not casting all my burdens on God. I started reading the Bible daily again, even though I had been not been experiencing the Word jumping off the page for a while. I was in a spiritual desert.

This morning I read Proverbs 25 to match today's date for lack of inspiration to read anywhere else. A verse jumped of the page! "25:28 Like a city that is broken down and without a wall so is a person who cannot control his temper." Theo and I had just talked last night about how God had woo'd us back again and we were needed to change the mood of the house instead of allowing John's moods to be in charge.

I knew immediately this was something to cover during our Bible lesson in school today. But John was having nothing of it, school, that is. "You didn't say we were going to do a full day of school, you just said we were going to do school!" There was more of his typical mix of hilarity and venom.

I kept that Word about controlling my temper in my heart, prayed, and remembered that he is hurting. I remained firm on my expectations while being kind and loving and trying to go out of my way give him gentle touches when he was in his most agitated moments. I also proceeded with our school day, encouraging him to jump in frequently. He slammed the bathroom door into the wall, leaving a hole in the drywall. He hurled a plastic shoe very hard at the glass in the front door. He writhed on the floor and upturned chairs and the vacuum cleaner. As long as I was peacefully moving on with the day while reminding him what was next those fits became softer and shorter. He didn't throw anything toward any people and he didn't touch any of us in his rages. We loved him and waited without paying too much heed to the anger that welled. To engage him or to force him to stop is only to escalate and create a dangerous environment. While this wasn't fun, he was in control enough to keep from hurting those he loves.

He refused to come into the room to participate in Bible and Etiquette but I saw at one point he had been quietly sitting in the other room listening as I taught Hannah. I talked about how bad things could get in a city if the walls were down. Then I talked about the walls of our hearts and how if we have trouble with our tempers it breaks parts of those walls and bad things can then get in.

It took until 5 pm for him to be calm enough to complete all of his tasks. He was still refusing to admit that he had anything to do for Bible and Etiquette because he had listened and, in his mind, that was the only point.

At that point, Theo called. I took a few minutes to talk in private about the situation, plying the older two children with cheese sticks for those precious moments alone. My temptation would be to say that he needed to write down what he had heard because I taught that class once already and without him participating, answering questions, making eye contact I had no way of knowing that he had absorbed the information. My primary goal was to encourage him to participate cooperatively when he is supposed to tomorrow, and other days.

Based on Theo's suggestions and the time I had had to relax, I had a new plan. I asked him to come sit at the white board. I wrote the class names on the board and then did a flow chart, basically. If he chose to listen to me explain something, he could then just tell me what he heard this morning and we could discuss. If he chose not to listen politely, he could write 5 sentences for each subject. One sentence is usually enough to send him into panic.

He chose the easier path. I drew stick figures of tossed chairs and overturned vacuums. I drew pictures of a stick boy sitting in a chair with circles on his head representing open ears. Because he chose to calmly stay, given his options, he was able to absorb the visual information and even giggle about his obviously unhelpful and silly behavior. I kept it light hearted. We talked about what I wanted as far as sitting in class and so on. He was in agreement and repentant. That conversation was a victory in itself.

Then it was his turn to tell me what he had learned in Bible. He had heard some of it and we had a great discussion about those bad things being able to get into one's heart and how the Holy Spirit had helped me this morning with that passage and how I thought it might help him. I told him I knew he didn't know how to control his temper but that if he wanted to learn and asked God to help him, surely it would be done over time.

He was thoughtful and quiet. After a few minutes he made a connection I would never have dreamed of. "Mom, the Bible says God didn't give us a spirit of fear..." John has mind-blowing, hallucinatory, debilitating fears and anxieties. We talked about how the enemy was like a thief coming to steal, kill and destroy. And what we had been given instead of fear was power, love and a sound mind. Wow!!!! What a thought! Those are exactly things that were frequently missing from my boy and fear was left in its place. We both agreed it was time to pray about that temper control to help build up those walls that protect his heart.

Aspergers vocabulary Word of the day: Proverbs 25:28 Like a city that is broken down and without a wall, so is a person who cannot control his temper.

Multiplication Tables

I've found a great new website: http://www.wrongplanet.net/ It's an autism community. It's very helpful to find other parents dealing with similar issues. It's also very helpful to find people contributing who have autism spectrum disorders and children of parents with ASDs.

I went there yesterday to see if I could find some help with John's issue of peeing all over the bathroom. I didn't find anything that quite hit the nail on the head yet, but I did find something else very interesting.

We've tried to move ahead in math but John still hasn't mastered basic multiplication, which makes division very difficult to learn. With his anxiety, if he doesn't know the answer immediately, he won't even attempt the problem. So math has been at a grinding halt for a couple of years. Let's throw in the fact that he has severe written expression problems and we spent all of last year getting him comfortable with the concept. He's finally comfortable and, as always, gets nearly 100% correct, only he has never gotten any faster.

We've tried math wrap-ups, Timez Attacks, other online math programs, saxon math, daily drills, math board games, flash cards, incentives, punishments, moving on while keeping a chart handy. Nothing has met his crushing anxiety and stood up to it.

But yesterday I read the advice of a grown man who has Aspergers and holds an advanced math degree. He had John's math issues as a child. His advice to the mother asking for help was to remember to tell her son explicitly that the tables are to memorize not to calculate. He had always thought he was supposed to calculate them on the fly but never got any faster. He wished someone would have thought to tell him to memorize them, not to worry about figuring them out.

OH MY WORD. I've talked to multiple friends about the hallmark of John's issues seem to be about not being able to connect the dots. This morning, I sat down with him and shared what I had read. I knew I was on to something immediately. I pointed out that he didn't have to think about what John 3:16 was. He didn't have to look it up. He just had it memorized. He didn't have to remember his address by finding it on a map, he just remembered it. A sparkle began to glimmer.

I got out the flash cards. I reminded him that I was going to do something new, I just needed to know which ones he already had MEMORIZED. If he had to think about them I was going to put them in the don't know stack. In the past, the don't know stack made him very upset. I understand now. He knew them if he was just given enough time. I was simply being impatient according to him, not giving him a chance. So we went through the cards and he basically only had 1's, 2's, and 10's down pat. I put them aside and showed him the don't knows. Because I reiterated that those were the ones that weren't memorized with immediate recall, he tolerated all of this.

Next I picked four cards from the don't knows at random. If learning them in ordered groups was tempting him to count up, I didn't want to repeat the same mistake. I already know that he can recall random facts like where we sat in a restaurant three years ago, so they didn't have to be in any grouping as long as he started memorizing them instead of calculating them.

I placed them on the table and wrote the answers on post-it notes. We stuck the answers to the table and then I mixed up the cards and had him match them to the answers. He did it gleefully about four times. Then I picked them up and had him say the answers as I went through those four in the normal flashcard manner. Small hesitation on one problem but he had them all. I explained what I was doing and why and how there was no pressure if something went in the don't know pile and I added the four new cards to his already knows list. He nailed it.

We went through it twice and he asked to learn four more! In about thirty minutes he had nearly mastered 8 new problems. They were completely chosen at random and I stopped giving him the mnemonic devices and other tricks that had helped me. He doesn't learn like I did.

Aspergers word of the day: connect the dots. Visually probably.

Wherein, I become a bad example.

I'm conflicted. I have a happy, wonderful story to share plus a screw-up I made. I think they are both important, but almost separate stories, though they happened together. I'll start with the good stuff first.

Last night, we took our first ever, family bike ride. We rode about three miles. I think John is somewhat hooked, loathe that he is to admit it. He chose to accompany me on my personal exercise time this morning.

We went back to the Riverpark for another three miles. We had such fun. He didn't fall when starting. His stops were smooth. He was usually ahead of me. I'd catch up and find him stopped at a water fountain or looking at something interesting. I'd just wave and keep plodding. A minute or so later, I'd hear a cheerful bell ringing as he'd pass me on the left. One time he passed me and playfully called, "What, are you taking it easy because you're still getting used to that bike?" I reveled in the happy ease of this time. Not many things with John are easy and fun. I don't see him gleefully (or even willingly) participating like this often.

Another time he stopped and was staring into the woods like a hunting dog on point. I stopped and he said, "I smell frogs..." I laughed and told him I was going to get ahead. A few minutes later we came to a bridge that crossed a sea foam green bog. It was foggy and had gnarled trees jutting up through the green. He was elated. "That's why I smelled frogs!" I explained we needed to go back. He agreed but expressed a desire to come back and explore this area again, soon.

I turned, mounted and started to ride. Behind me I heard a female voice call, "On your left." John had weathered every other passing well, but this time he was in the middle of a start. He still weaves a little on starting. A moment later I hear an agitated "WATCH IT!"

There are times I've wondered if I had that Mama Bear instinct. I'm usually quite calm about my children and their interactions with others. I usually am quick to see the other side, finding at least some fault with my children. John used to sometimes do things like step on someone's foot and when I'd get on to him the adult would say "Oh, it's okay. It didn't hurt." I'd be frustrated because whether it hurt or not wasn't the point. I've stood up for my children before, just in a quietly determined way, instead of a fierce way.

Today, I felt fierce. Here was John just over a week into his biking odyssey, he had been doing so well and he wasn't being a menace. He gets a little confused about left and right and I'm sure he scared this rider as she passed. What I heard was an accusation in her tone, like he was intentionally trying to trip her. I detected disdain. I detected judgment. I was angry at her for interjecting that into our wonderful experience this morning.

I yelled as she passed, "Brand new, special needs rider!!!" She hollered, "What do you want me to do?! Go practice!!!" It's a good thing she was in much better shape than me or I might have chased her down. I thought about yelling that's what we were doing and so forth. I wanted her to come back so I could explain how her tone was inappropriate. I brooded on it for a while as we rode.

I came to quickly realize I had behaved poorly. I was conflicted. Turns out, I am a Mama Bear. But, in fact, my child wasn't in danger and he needs to learn how to respond in these situations so he doesn't actually cause harm to himself or anyone else. I also realized the lady had no idea about John's special needs and was, in all likelihood, scared on top of frustrated.

When we got in the car, I explained I shouldn't have done that for two reasons. I was feeling protective but he was not in danger when I yelled. The other reason was that I had used his special needs as an excuse, which is precisely what I've told him never to do. He agreed and said, he'd been thinking about why I yelled at that lady because he realized I was using an excuse. I apologized and said it was a bad example.

He said, "Mom, I know she was being mean because people usually say 'watch out' when they are being nice and 'watch it' when they are being mean. It's like when I hit Hannah when she does something wrong. You always say you can't get on to her because I get in trouble myself with my hitting. It's a lot like that."

Wow! He seems to be quicker than his mother today in more ways than one. I wonder how many other moms out there of kids with special needs won't allow them to use their diagnosis as a crutch while making excuses for them at the same time. What do you think about that? I'm proud that I'm willing to come fiercely to the defense of my son and I'm embarrassed by my need to explain something unnecessarily in terms of his disability. Have you ever had a similar experience?

Taking Time to Smell the Dogs

We've been very busy around here. The same week John had bike camp, our city's nine-day music festival , Riverbend, started. We were all excited and had already been running on high so we piled in the van in ninety degree temperatures and headed downtown along with tens of thousands of others.

John was immediately unimpressed with the idea. "I hate Riverbend. I hate listening to muuuuuuuuusiiiiiic. I'm not going" with his classic, arms-folded-across the chest maneuver. He loves music. Geez. We reminded him of all the fun he'd had before and just kept on with our plans because we decided a long time ago that we might have to make accomadations for John but he was not going to run the entire household with his ever-changing desires.

He warmed to the idea and started to get excited, though he picked on his sister most of the way there. Then we had to walk a mile and he was livid. He also had to pee. And he was thirsty. OH. MY. WORD. How on earth could we miss that he was thirsty? He informed us of the fact about a million times.

He also stepped in front of us, close enough to trip us, grabbed things out of our arms, back talked, picked on Hannah, complained, and was generally no fun to be with. Let's not forget it was extremely crowded and we didn't know where the port-a-potties were, let alone, the closest place to buy water.

We got some super expensive water and took him to the bathroom but that didn't stem the flow of complaints and insults. He was picking fights even with me, his staunchest supporter. We were rushed along by the pace of the crowd and the desire to see an act and frankly to find some loud music to maybe distract or at least drown out John while juggling three kids and folding bag chairs. We were in a hurry, a little lost and it was getting very frustrating. I asked Theo, after John stepped on my toes, both literally and figuratively, again to take over because I was feeling much less than gracious toward him and he didn't deserve all of my ire. Some of it, maybe, but not all.

Within five minutes, I saw Theo, red-faced, speaking very intensely and pointing at John. I realized we were both about to blow our tops. Something about seeing someone other than me being that angry with him allowed me to feel a little compassion. It frequently happens that way. I think it must just be a quick change in perspective.

I suddenly started thinking Aspergers and realized this was a major assault to his system. Not only had we not given him a verbal or written plan (which generally helps tremendously), he was being bombarded with intense sensory stimulation and the only people in the world who could help him were getting angry and saying mean things in harsh ways toward him. This place was an Asperger nightmare.

I sent Theo on with the Hannah and told him I was okay to deal with John now. He nodded thankfully and huffed away. I completely understood how he felt. I walked over and put my arm around John in what I've learned is a safe way. Too light a touch is received badly, too heavy and he feels trapped. A hand too high on his shoulder and he wrenches his body away and runs. I smiled at him and said, "This is really hard for you, isn't it?"

Immediately, all the hostility melted and I saw my John again. "Yeah Mom!" So I took a few minutes to walk at his pace and explain what we were doing and the plan for the rest of the evening. I also reminded him he could ask for help instead of being mean. I also apologized for being nasty with him. He leaned into me as we walked in the stifling heat but it felt so much better than our relationship just a few minutes before.

As we walked near the stage, John spied this lady with a dog at the top of a rock incline. He asked if he could go say hi to the dog. I hesitated. I wanted to say, "No, John. We are already missing the beginning of this show. Daddy and Hannah are already finding seats and visiting a dog is the last thing I want to do because I'm also hot and tired of walking and ready to sit down. AND I don't feel like rewarding your behavior."

But I thought better of it. What did it matter? We were close enough I could clearly hear the music even though I couldn't see the performers. I could see Theo and motion to him that we were alright and would be there shortly. So I told him sure and reminded him to ask the owner first.

He walked up and spent the next ten minutes having a lively conversation about all the dogs and cats he knows and how important they are to him. He talked about his aunt's dogs, his grandma's dog, the cat we found at the dam. He loved on the dog and returned completely calm and ready to participate. He was grinning, relaxed and happy. He had a positive social interaction, do something self-directed, and got to be with an animal. Ten minutes bought us almost a full evening of peace. It was a good investment.

As I watched him, I found myself calming as well. I realized we were going to have many days at this festival and I actually giggled as I reminded myself of an old saying translated into Aspergers: Take time to smell the dogs.

Oh, I almost forgot to share the dog's name. John said, "Her name is Cemetery. That's an interesting name. Of course, a cemetery is where you bury people so the name must be based on the other meaning."

Pause. Blink. "Um.."

"Mom, what IS the other meaning of the word cemetery?"

"There isn't one, John."

"Oh. Well, it was a cool dog anyway." A beat. "Weird name."

Bike Camp: Day 5 (Run, Forrest, Run)

John woke up on Day 5 keyed up. He was anxious to go to his last day of bike camp. He wanted to see his favorite new friend and wanted to ride his own bike. He was clumsy and speaking fast and a little impulsive.

He marched confidently into the gym and mounted his new bike while it was steadied for him. He promptly hopped off and grabbed his crotch in a most dramatic and graphic way. Some adjustments were made and he tried again, each time raising off the seat and adjusting his privates.

I could see the change in his face. His love for his bike was changing with each lowering of his body onto the bike. But his entourage, once again, pulled it out and he was happily walking his bike to the parking lot. By the time I got outside, I could tell he was frustrated. His bike was a little bigger and heavier than the one he had used for the last two days.

He was having difficulty starting, stopping, wobbling and sitting on the silly seat. One of his faithful volunteers had the idea to run inside and get a gel seat cover to make it softer. John was willing to try again though he was quick to tell me he hated his new bike. He kicked it a few times and tried to ride again.

Things went passably for a few minutes when I noticed three people in yellow shirts running across a large field. UH-OH! John had taken off. It was reminiscent of Forrest Gump. I wondered if he would ever stop. Further, I marveled at his amazing speed and coordination. He unfastened his helmet and threw it to the ground without slowing. My son who normally runs clumsily and heavy-footed, with his head down and his arms straight to his sides was loping across the field, head up, arms pumping. Two tall teenage boys were full out in pursuit and not particularly gaining on him.

I suffered indecision. Do I intervene? Do I let him run until he loses steam? Do I call off the boys and hope that when he isn't being chased that he'll stop panicking and stop a safe distance away (like he usually does) until he is ready to return? At last it looked like his energy was flagging and the boys were starting to close the gap. He turned and planted him self resolutely facing a brick wall and standing between two tall bushes.

The boys greeted him warmly, albeit somewhat breathlessly, and congratulated him on how wonderful and amazing he'd been doing. I think they were also impressed and quite surprised at his running ability. His new friend, fellow camper, came over and was trying to encourage him. The two of them moved off as John was no longer running but still putting as much distance between himself and his confounded new bike.

He went to the gym and locked himself in the boys bathroom. They have staff members just for occasions such as this. Andrea showed up and had a list of solutions to the problems that John had been having. After a great deal of coaxing John came out of the bathroom and spoke to Andrea. As he had calmed to a certain extent, I realized my presence might add to his stress so I returned to the parking lot to let her work her bike training magic.

Finally, they showed up in the parking lot, donned helmets and went back to work. She showed him a new kind of start, called a "power start" which would keep the pedals from hitting him on the ankles. They practiced starting and stopping on his bike and at last he was out making his volunteers chase his blue and chrome streak all over the place.

He even fell at one point, entangling his bike with his 16-year-old victim. We all held our breath waiting for him to bolt. He sucked it up and got right back up on the horse, so to speak. He ended on a high note and we went inside to watch a wonderful slide show of all the successes the campers had this week and to watch them receive gilded bicycle trophies.

Chattanooga Bike Camp works miracles! See ya on the trails!


Bike Camp: Day 1
Bike Camp: Day 2
Bike Camp: Day 3
Bike Camp: Day 4

Bike Camp: Day 4

There was a lot more of the running/biking/sweating. He made a new friend. He learned to start and stop. And a third camper launched by the end of the session.