Patience – He Said What?!

The Dandelion

I’m a little…actually, a lot…fired up right now because of an article I just read. Apparently, a special-needs teacher in Indiana decided on award night to present one of her male students with the Most Annoying Male award. Yes, you read that correctly. She did this in front of all the other students and their parents, including the parents of this young boy.

OK. You have the background now for why I’m upset. To publicly humiliate this boy and his parents is inexcusable. To do it in this fashion is heartless. And the fact that this woman actually teaches special-needs students is beyond belief.

Yesterday evening, after we ate supper and as I was cleaning the kitchen, I looked over at our kitchen table. The evening sun was shining in the windows beside our table, highlighting the beautiful flowers that Gary brought to me last week for our anniversary. The flowers still look so gorgeous, so bright and cheerful, that I just had to snap a picture.

When I look at those pretty flowers, I’m reminded of Gary’s love for me over all these years, and how he showed it on this particular occasion. Gary shows his love for me every day in so many ways, but he knew that these flowers would be a very special way to demonstrate his love on our special #40 anniversary.

Later, I went out to the garage to talk to Gary while he whittled on a walking-stick he’s finishing. It wasn’t long, though, before we heard the familiar sound of Aaron’s fast walking headed in our direction through the house. He loudly opened the door and barreled into the garage, primed to talk about whatever was on his mind. So much for our quiet conversation, Gary and I both said without speaking as we looked at each other.

I became occupied with some things that needed my attention, soon realizing that Aaron had disappeared but had not gone back into the house. I stepped out on the driveway and sure enough saw Aaron at our neighbor’s house. He was standing at their pool talking to them as they were, I’m sure, trying to have a few moments of conversation without interruption from either of their young boys. After calling to him a few times, Aaron turned to come home, and I turned back into our garage.

A few seconds later, Aaron rounded the corner and ran excitedly into the garage. “Here, Mom!!!” he exclaimed. Into my face he thrust his gift…a decrepit looking and closed-up Dandelion.

Aaron was all smiles as he awaited my reaction, holding this unimpressive Dandelion under my nose. Honestly, my first initial impulse was to say something like this: “Oh Aaron, how sweet, but I don’t need a Dandelion in the house.”

Yet something stopped me as I saw Aaron’s huge smile and looked at how his eyes were sparkling with delight. So, I took the little Dandelion and instead thanked Aaron. When I did, Aaron spontaneously put his arm around me and gave me the sweetest side hug! If you know Aaron, you know how unusual this was! I hugged him back, a little awkwardly because I had been turning to walk away and because I was so surprised at his hug.

Aaron chuckled, full of satisfaction at his good deed. I told him to come with me and we would put this special flower in some water. This made Aaron very happy! When I put the browning and unimpressive Dandelion in a small plastic glass of water, you would have thought I had put a gorgeous bouquet in a crystal vase. Aaron grinned from ear to ear as he bounded back outside to talk some more to Gary.

I decided to put Aaron’s little gift beside Gary’s big gift, which only accentuated the smallness of this meager Dandelion. Yet, in no way was Aaron’s intent any smaller than Gary’s. Both were full of love, expressed in two different and yet two very sweet ways.

This is Aaron. He does, in the midst of his often perplexing and annoying ways, show us his love. He shows love on his terms and in his times, not usually on ours. But in allowing him this freedom we are also allowing him to be expressive in manners that suit him and that come from deep in his heart. It’s beautiful to see!

You notice I did say that Aaron can be annoying. Aren’t all of our children, at times? Yet never would I publicly shame Aaron as this teacher did to her student. Our special children often find it impossible to function as expected in our complex world, but they are rarely setting out to purposely be annoying. It’s up to us as parents and as teachers to understand this and to respond appropriately.

I don’t always understand, and I don’t always respond as I should. Like last night as I said goodnight to Aaron, why did I choose that time to mention his need of improving his showering skills? It took him a while to wind down from that, just when I am most tired, but what did I expect? There are times I need a lip zipper, for real!!

This morning I saw that Aaron’s closed and rather ugly Dandelion had opened fully and was a bright yellow. I showed Aaron, and he smiled a smile that was as bright as his Dandelion gift.

Our special children…ALL of our children…will open and thrive if given the opportunity. A little water and some light totally changed my little Dandelion. He still looked small beside the larger vase of flowers, but he has quite a large place in my heart.

Just like our Aaron. If given the chance, he can shine along with the biggest and the best. It’s just going to be in HIS way, and I need to know that this is a good thing. A very good thing!

I also need to remember to point out to Aaron his own progress and accomplishments. He loves hearing affirmation, just like he loved seeing his Dandelion gift sitting there looking brand new. It reminded him that he had made a very good choice!

I pray that Indiana special-needs teacher will understand this someday, too. And I especially pray that her student will be nurtured and will open up to his full potential…and that someone certainly threw away that awful “award!”

The Turn Signal

A few months ago, as I headed out of our neighborhood taking Aaron to his day group, I noticed that my right turn signal didn’t sound right. The second time that I pushed up on the turn signal lever and heard that very fast clicking sound, I knew what it was. Either my front or my rear turn signal was out. I drove across town, dropped Aaron off, and then before leaving I got out of the van to check the turn signals. Sure enough, the rear signal wasn’t working.

Bummer! Of all the days to have this happen, it had to be on the day I had several errands to run instead of just going straight home. One of the places I had to go was McConnell Air Base…and they are super picky there about things like the speed limit and vehicles working correctly. Imagine that!

I drove under the speed limit the entire time I was on base and was thankful that I only had to use my right turn signal once. But I was sure that this one time would be the one time that an MP was behind me!

I had also promised Aaron that I would take him to one of his favorite stores, Big Lots, after I picked him up. Our local Big Lots had closed, so I had to once again do some extra driving in my defective van. I never knew how many times I needed that right turn signal until it wasn’t working! And I decided a possible conversation with a police officer was a better choice than the conversation I would need to have with Aaron if I told him our Big Lots trip was cancelled.

I wanted to paste a sign in the rear van window that explained my situation…to let others know that I knew my light wasn’t working…to tell them that I really DO know how to use a turn signal. How many times have I said that very thing out loud about other drivers who don’t use their turn signals? I was feeling a little guilty, wondering how many of their signals were broken, too.

Sometimes we just can’t see and don’t understand what a person is going through, do we? We look at the outside and think things look fine, but the inner workings of a person are far more complex than what we outwardly see. This fact is very true for every single one of us but is very VERY true for our Aaron.

To be clear, I am not saying that Aaron is broken. What I AM saying is that Aaron’s responses and handling of life situations can manifest outward behaviors that are extremely frustrating for others around him to understand and handle correctly. His brain is wired way differently than typical people, and so his turn signal often doesn’t let anyone around him know the direction he is getting ready to take until he’s turned that corner and there’s no going back.

Karen Williams wrote in a paper years ago concerning students with autism: “Rage reactions/temper outbursts are common in response to stress/frustration. Children with Asperger’s Syndrome rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate they should be. Interacting with people and coping with the ordinary demands of everyday life take continual Herculean effort.”

Williams was writing about young students, but this same description also applies to adults with autism…to our adult with autism…our Aaron – who definitely flipped his turn signal on last week at the theater.

First, the set-up: Aaron had been home for three days this past week due to our severe weather chances and flooding concerns. Aaron loves being at home where he is totally relaxed and able to do all the things he enjoys. But when he must re-enter normal life, like going back to his day group at Paradigm, it is often a huge struggle for him. And therefore, for everyone around him.

On Friday, Aaron was reluctant to go to Paradigm. Even the thought of Friday movie day didn’t really help him. He decided not to go to the theater, despite having his nine dollars in his wallet for popcorn and the prospect of a fun movie to see. I encouraged him to go to the theater, and his staff encouraged him to go after texting with me. But no one MADE him go. However, that is not at all how Aaron saw it. His anger was getting deeper.

Second, the incident(s): At the theater, Aaron took a behavioral turn that everyone could see despite his lack of a working signal. I don’t even know all that happened there, and don’t really want to know. I believe, though, that his day group staff was told by theater staff that Aaron needed to leave. No matter what I know about Aaron and what I understand about his autistic outbursts, these times test my love and my patience. I’m a normal mom who is terribly embarrassed when Aaron blows it, especially in public.

I wonder what all he did there. Who saw him? Did anyone we know see and hear our son acting that way? Now what?

Third, the repercussions: When I went to pick Aaron up at the theater, he was sitting in the Paradigm van. Aaron emerged from the van with a very unhappy face, and I knew something not-so-good had happened. Athena, his kind staff, gave me a very brief update, but Aaron’s still-angry mood told us it was not the time to discuss it.

He and I talked about it on the way to Wal-Mart, and again inside the store. But Aaron was saturated with frustration and guilt so I knew I could only say so much before I would push him over the edge again. Two repercussions that initially happen with Aaron, when that angry turn he took is over, are regret and guilt. He truly wishes that he hadn’t gone so far in his anger.

Aaron was totally compliant in Wal-Mart, overly so. This is his way of making up for his angry actions. At the self-checkout counter, Aaron was super helpful. He held my coupons, helped unload the cart, and couldn’t say thank-you enough to the clerk who assisted us.

“Am I being good, Mom?” he asked at one point. “Am I helping?” And he looked me square in the eyes, waiting for my response and my affirmation. It would have been so easy for me to say, “Yes, Aaron, but I sure do wish you would have been this nice in the theater!”

But when I saw his eyes, tired from the bad day and hopeful that he was finally doing something good, I nearly cried. Right there in the check-out lane at Wal-Mart with holiday shoppers all around me, I wanted to burst into tears for Aaron and for me. For Aaron, because I fully know that he can’t repair his broken turn signal in time to avoid that wrong turn. And for me, because I love him and I want to “fix” him, but I really can’t.

I turned away quickly and finished paying. Aaron helped gather up the bags out of the cart and we walked to the van, happy that the rain had stopped. When we got home, another storm was coming. Aaron was concerned about the lightning while he was on his computer, so he wanted me to be sure and tell him if he needed to shut the computer off.

“Mom,” he instructed, “come up and tell me, or call to me from downstairs, OK?”

He waited for me to respond.

“I’m giving you two decisions,” he finished.

I always smile at how he says that…two decisions instead of two choices.

But I thought of how true his saying was at that time. I did have two decisions regarding more than lightning and his computer. I also had two decisions about that turn signal issue of Aaron’s. I could be angry and berate him, or I could be loving and instructive at the same time. The decision is mine to make, despite how difficult it sometimes is. It’s easier to lash out at Aaron, honestly, but harder to be loving and patient with instruction thrown in. Yet the first decision only brings more anger and hurt. The second decision, hopefully, helps to fix Aaron’s hurting heart and show him a better way to handle his anger.

Back to my van’s turn signal – Gary was able to pick up the correct part and repair it that evening. Aaron was beside him the entire time, at one point using that moment to show Gary some scrapes on his legs. Aaron is so oblivious about how he looks in public, and at times it’s really funny.

But at other times, like the theater incident, it’s anything BUT funny. How we wish that we could install the part that would make Aaron’s turn signal work correctly and avoid all the damage that’s done when it doesn’t!

How many times do I wish I could paste a sign on Aaron’s back that explains his behaviors?!

I can’t, though. We just keep driving down this road with Aaron, trusting that some people understand and not worrying about the ones who don’t. Easier said than done! But God does give grace and He gives us wisdom to make that right decision…and He redirects us when we don’t!

Aaron’s turns aren’t easy when his signal’s messed up, but we’re there to repair the damage and pray it works better at the next turn.

And sometimes hang on for dear life!

Included

Last night, I peeked into Aaron’s room and saw this:

THIS…is Aaron finishing The Meg movie by watching the credits. He keeps his eyes glued to the screen as if he is looking at the most pivotal part of the movie and wouldn’t dare look away. He knew that I was getting ready to go downstairs so that he and I could watch our nightly show.

“Mom, I’m almost done!” he said. “It won’t be long!”

To Aaron, the credits are a part of the movie. He will not end a movie when most of us say that a movie is over. No. The movie is over only when the credits end.

If Aaron starts something, he will finish it in his Aaron way.

Aaron has started something else recently. It’s not the first time we’ve seen him start this thing, but it’s the most recent. It’s not something that we can touch or see, but it’s something that we definitely hear. And feel…because Aaron feels it deeply.

I can explain it by telling what happened a few weeks ago. We were eating breakfast on a Saturday morning on our patio. Gary prayed before we ate. One thing he did was to ask God to take care of us, and also to bless and take care of Andrea and Kyle, and Andrew. He named them, but for us three sitting at the table, Gary just said “us.”

No big deal, right? Wrong.

Aaron’s head popped up after the prayer and immediately he said, “You don’t also want to love ME?!”

Gary NOT using Aaron’s name did NOT sit well with Aaron.

We talked about why Gary called us “us,” and explained that it had not one thing to do with not loving Aaron. Aaron finally hushed about it, but we could tell he wasn’t totally convinced.

Like I said, once Aaron starts something, he will finish it…sometimes weeks later. And even if we think it’s finished, one more little part of it may emerge at any moment.

Aaron has a very difficult time expressing his deep feelings in conversation. He also has a blind spot when it comes to seeing how he is affecting others at times. But to be so unaware of other’s reactions, he sure can see a difference sometimes in how we talk to him compared to how we talk to our other children.

For instance, when I’m on the phone with Andrea, Aaron will almost always stand beside me at some point and want to talk to her. He waits and waits until I let him have the phone, or turn it on speaker, and then he goes on and on and on about his latest movie or game. He doesn’t ask her about her life but gets his satisfaction by doing all the talking. Andrea responds so well, and Aaron loves it.

But Aaron has also observed that the way I talk to Andrea, and she talks to me, is different from how we talk to him. He doesn’t get why it’s that way, and he really isn’t able to change it, but he does know that our interactions with each other are not what they’re like with him.

This has been bothering him lately, and he’s been comparing himself to her or to Andrew. Therefore, he strives for attention…and Gary and I strive to give him a share of our attention while we are getting more and more tired of the striving.

The other night, Gary and I snuck outside and sat on our front porch. Just the two of us. Talking. Uninterrupted.

But then we heard the door in the garage close. Aaron popped around the corner. We were caught!

There Aaron stood, talking and talking and talking. Talking about Terminators and Trandoshians and clones from the Delta squad and visor modes…

Our brains freeze and our minds wander when Aaron talks non-stop. Then he asks a question, waiting for an answer, and we do a mental hustle trying to remember what on earth he was talking about. It’s a scenario repeated so often, and one that Aaron so often interprets as a lack of interest on our part.

A couple nights ago, Andrea texted during supper and sent us a picture of what is growing on the mystery plant in their yard. Grapes! It was fun to see the picture as we’ve all wondered if the plant was a grapevine. Gary and I were happy!

Then yesterday, she sent a picture of their first onion harvest from their backyard garden. And again, we were happy.

But Aaron was not happy. Once again, he sensed more enthusiasm from us about Andrea’s life than his. And once again we were doing damage control for much of the evening. UGH!!

This morning, Aaron was up and on his computer at 4:30. That’s 4:30 A.M!!! I got him to go back to bed, but he was up again not long after. And as I talked to him, he mentioned Andrea and her things and he hoped she wouldn’t call.

I sighed. But not where he could hear me. He heard me sigh once when I was on the verge of anger.

“Don’t breathe madly!!” he commanded me.

I went to the kitchen this morning, and then decided to do the hard thing that I didn’t feel like doing. I walked back upstairs to Aaron, sitting at his computer.

“Hey, Aaron,” I said. “Do you want some eggs and bacon?”

He did. So later, there we were, sitting at our kitchen table eating eggs and bacon. I wanted to be having my quiet time and talking to God, but here I was having a not-so-quiet time and talking to Aaron.

But before I prayed over our food, Aaron blew me away by what he said.

“I just want to be included,” he said.

That was truly amazing! And as we ate, I was able to assure him that he IS included in our lives. Yet no number of words coming from my mouth gave him assurance of that fact as much as my listening to HIS words coming from his mouth.

Really listening. Asking questions. Looking at his Ironman Guide Book that he ran and got from his room.

The flying fortress. AIM. Girl face statues. Titanium Man. The frozen ship. The brain controls that make you dizzy. And oh, SO much more!

Then I got a text on my phone.

“Better not be Andrea,” Aaron muttered. “Like her grapes and onions!”

I wanted to laugh but knew better. And I know better than to think that this inclusion and being loved business is settled. I know it isn’t. But I was very touched by how Aaron calmed and responded when he knew he had not only my full attention, but my full interest.

The credits on this part of Aaron’s life movie are still rolling, and we must show interest…and also guide him to know when it’s time for a break.

And that a break doesn’t mean exclusion!

God, give us and so many other parents like us the grace to love ALL our children just the same, even when the expression of that love is anything but the same.

My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening. I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures. I would rather have heard a seizure, honestly.

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels. I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook. I love sharing the very unique and humorous ways that Aaron speaks. His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word.

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00. He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set. But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer. When Aaron plays a game like this, he has a very hard time stopping it and saving it. He must reach a certain point in the game, and in his mind, before he will turn it off. For over an hour he kept repeating the same phrase, loudly: “I’m coming!!” Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time. We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out.

“Can we watch Bones, Mom?!! Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that. He was in such a tizzy. And he could tell that I was tired and didn’t want to stay up late. His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility.

Mom was mean. Mom was dumb. Mom didn’t care. On and on.

He turned his DVD on. Turned it off. More yelling. Turned it on. Turned it off. Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry. I wasn’t crying, but he didn’t believe me, so he stared and stared at me. And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much. He looked so funny, really, that in my tiredness I did the forbidden…I laughed. Aaron thought I was laughing AT him personally. He erupted and we traveled even further downhill than we already were.

It was a wild hour after that. He was in and out of his bedroom…in and out of bed…in and out of our bedroom. He was calmer talking to Gary…angry talking to me. Say goodnight, Mom…no, don’t say goodnight, Mom. I don’t want your goodnight kiss…OK, I do want your kiss.

He calmed when Gary came upstairs. He let me hug and kiss him goodnight. And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated.

My calmness during the whole episode only seemed to fuel his flames. The realistic, upset words I did say seemed to appeal to him more than soft kindness. So strange how that works. So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors. Seizures are scary and sad. Behaviors are exhausting and often hurtful. People feel sorry for seizures. But behaviors…what do you do with behaviors?

And behaviors leave me feeling like a very unfit special needs mother. I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me. Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort. But my tension was strong, too, and sleep wouldn’t come. My tossing and turning was keeping Gary awake, too, I knew. I would relax and then thoughts would wash over me. I would relax again and Aaron would stir, seeming to be restless as well.

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately. How could I have handled it differently? What should I have said? What should I have NOT said? Guilt for not liking Aaron when he’s out of control. On and on.

What I do know is that God is always there for me. He heard me last night, there in the dark, praying and confessing and praising. He knows my form. He knows that I am human and that I am weak and that I need Him, totally. He knows that I get frustrated and tired, and that I do love Aaron with all my heart. And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy. Some days…and happenings…make it harder than others.

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace.

That’s the kind of parent I need to be with Aaron. Forgiving him…understanding but not condoning…and opening my heart and my arms with love.

I have no superior wisdom or strength. I mess up…I give up…I look up. And there I find God, always understanding and giving me grace.

God’s a good Father to me, his special needs daughter. I need all He gives to me and does for me, for I have nothing of my own. He certainly didn’t choose me for this parenting role because of anything I have to bring to the table. He chose me because…well, I don’t really know. But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest. Which is often.

God loves me, His special needs daughter.

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care.

Parts and Pieces

I walked out into the garage the other day and this caught my eye.

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What is this? It certainly looks like a small trash can that contains little pieces of paper. It is that, but it is also much more. So much more, at least to me.

You see, this trash can holds the small pieces of paper that are left when Aaron cuts out a coupon for me. Aaron cuts out the Sunday coupons every Sunday, rain or shine, do or die. He has quite the coupon cutting routine going on as he positions everything just right. His pillow on which he sits, his coffee beside him, a particular pair of scissors that are used ONLY for coupons, the coupon box…it’s all placed just so-so before the cutting process even starts.

Then he methodically cuts each coupon on the dotted lines (more or less), and if there is final perfecting needing to be done…if the dotted line cutting isn’t quite accurate enough…then he will continue to cut around the coupon that he is holding until it is just right. Thus he has small strips of paper that fall to the floor in front of him.

These strips of paper cannot just be scooped up and thrown away. No, no!! He carefully takes each thin strip of paper and cuts it into even smaller pieces as he holds it over his little trash can. For weeks and weeks, these paper strips pile up inside his green trash can until finally, someday…when the can is very full…Aaron, and only Aaron, will decide to throw them away and start all over.

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When I glanced at the familiar trash can that day, seeing all the colors and sizes of papers inside, I immediately thought that this is such a true picture of Aaron himself. There are so many parts and pieces of Aaron, just as all of us have parts and pieces, but Aaron’s are truly unique because of his autism. Looking at all the pieces of what makes Aaron…Aaron…gives much understanding of what makes him tick. Maybe it will also give all of us some needed understanding of so many others who are one-of-a-kind special people, yet similar in many ways as well.

Let me give you some examples of our Aaron’s parts and pieces.

I’ll start with coupons. Sometimes I will put a Dillon’s coupon in the red coupon box. If I haven’t had time to sort the coupons by the following Sunday, this is where I will find the Dillon’s coupon.

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It’s under the bench beside him. This is because Dillon’s coupons are odd to Aaron and don’t belong with regular coupons.

This way of thinking is also why I found these a few days ago.

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These are Skittles, but not just any Skittles. They are misshapen in some way, so Aaron won’t eat them. To the side they go, to be later thrown away.

This same Aaron principle is why I sometimes find pieces of food on a napkin, set aside by Aaron to be thrown away instead of eaten. Usually this part of his food is shunned because it’s too crisp. He can’t just push it aside on his plate. It must be completely removed from the plate.

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Aaron must nearly always have a spoon and fork when he eats, even if he’s eating a finger food that requires neither. And multiple napkins, for sure!

Aaron always, always has a salad when we eat in a restaurant. Often the salad is served on a plate, which he never minds at all. But here at home, salad must be in a bowl. One night I suggested that he eat his salad on a plate, to make it easier. He stood by the table, staring at the offending plate, and then told us that he just wouldn’t eat salad that night. He wasn’t angry…just very matter of fact. So I got out his bowl and he ate his salad.

Aaron enjoys watching Wheel of Fortune at 6:30, after supper. One evening I asked him if he was going to watch, and he said yes, so I told him to turn on the TV. He paused. Why? Because it was 6:25…and Aaron will NOT turn on the TV for Wheel of Fortune until 6:28. Yes, you read that correctly. 6:28. On. The. Dot.

6:25 was a ridiculous idea. Aaron stood there, staring at the clock for a few seconds before his eyes riveted back to the television screen, black because it was OFF. Clock. Screen. Clock. Screen.

Finally, he spoke. “Should I turn it on at 6:27?” he cautiously asked.

I took this event as seriously as he did as I told him that I would turn it on, so he ventured out and did just that.

VICTORY!!! At least for that one night.

He wants to only eat lunch at 12:00 on the weekends when he’s home, or maybe after…but NOT before 12:00. I asked him one Saturday if he wanted to eat lunch and he said yes. Then he stopped and looked at the clock. He then said no to lunch. I knew why, but I asked him anyway.

“It’s 11:48,” he replied patiently to his silly mom. “I’ll eat at 12:00.”

I’ve watched him sitting on his bed carefully watching his clock before writing his time-to-bed in the log that he faithfully keeps. As soon as the clock is precisely on the next minute, he will write down the time. Or I’ve seen him write down the time, look at the clock as it suddenly is on the next minute, and then watch as he scribbles through the time he wrote in order to put down the exact minute.

And when Aaron watches a DVD, he watches it from the very beginning to the VERY end…all the credits…EVERY single line and word. He does the same with a book, reading the very first page, the table of contents, and ending with the index in the back.

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I’ll never forget how I learned that about Aaron. Years ago, he was reading one of his Handy Answer books and he came to me with a question. “Mom, what does http/www. ,mean?” I asked him to show me what he was talking about, so he showed me the very end of the book with all the references to various web sites. Even after I told him what it was, and that he didn’t have to read that, he continued to read every single one.

Living with Aaron can be so many things because of his many parts and pieces. It can be hilarious, fascinating, entertaining, demanding, frustrating, and maddening. All in one day!!

And just as there are outward displays of his varied parts and pieces, there are many inner examples of Aaron’s unique design. His way of thinking…of processing life…of feeling valued, or not…of feeling important, or not. Those parts of Aaron are sometimes very difficult to predict, to understand, and to handle correctly.

It’s his inward desires that, if unmet, are often understood better by us only after angry eruptions on his part. This is very typical of those with autism. Aaron already has a hard time talking to us about his feelings or desires, but it IS those very feelings and desires that drive him to outbursts of anger and resentment.

So again, we are seen trying to fit together another aspect of Aaron…more parts and pieces, like his coupon pieces, that demand to be seen and understood for what they are.

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We have been a party to this inner part of Aaron for some time now as it relates to his sister falling in love. Andrea and Kyle will be married next month, so this occasion has opened a whole new door to us…and especially to Aaron. Matters of the heart actually open all sorts of doors. It’s been a very interesting, and sometimes very sad, process…one that I will write more about later.

One that has plenty of parts and pieces of its own! Stay tuned!

Feeling The Lines

Aaron walked into the kitchen the other night and my eyes were drawn to his feet. Why? Because this is what I saw.

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I poked Gary with my hand and motioned for him to look, and then we both stifled our laughter.

“Aaron?” I asked. “Why are you wearing your slipper socks that way?”

“Because I get tired of feeling the lines,” he answered, matter-of-factly.

Who cares about the safety factor of non-skid lines NOT being on the bottom of your feet where they belong, right? Comfort was most important to Aaron, as it always is…not safety, and certainly not style.

Comfort in areas other than clothing is also very necessary to Aaron. However, these “other” areas are sometimes a mystery to us. Or they are areas in which we know Aaron struggles because of his autism but are also situations over which we have no control. And, I might add, over which Aaron has no control. No matter how much we wish he did, or think he certainly could or should, he just doesn’t have the ability to corral his emotions and frustrations like a typical person does.

Here’s an example: Aaron and I were recently in Longhorn Steakhouse for lunch before one of his doctor appointments. There was a table near us where several businessmen sat. They were having a normal conversation, but one of the men in particular was rather loud. When his animated voice was combined with the normal give and take of the other men, their voices at times overtook our area.

I saw Aaron’s eyes dart over to their table several times. Soon I knew that Aaron was bothered by the sound of their talking, especially the louder man. They would talk, and laugh, and talk and laugh some more. Finally, Aaron was downright staring at them, so I told him to stop doing that.

“Why do I need to stop?” he asked.

“Because you need to mind your own business,” I told him.

“How can I mind my own business?!” he impatiently answered. “They’re talking and laughing! I can’t stand it!!”

I was proud of Aaron for verbalizing his feelings to me. I was also nervous that he would tell those men to be quiet, as he has done in other situations. But he didn’t do that, thankfully, and I was able to keep him engaged in our own conversation about movies and aliens and other subjects that were far more valuable to him than all that silly, loud business talk!

Sometimes the slightest nuances can trigger Aaron. Sometimes what triggered him yesterday might not trigger him today. Or what upset him today is something that he laughed at yesterday. We just never totally know or can predict with accuracy when his anger will erupt…or simmer.

This is one of the very most difficult parental aspects of raising a child…or having an adult…with the behavior issues associated with autism. And even when you have had smooth sailing for a while, a storm can always be on the near horizon.

Another example: Last week Aaron got out of bed and came into the kitchen. I don’t remember what I said or did, but I think I told him good morning and I said it with a face that was a little more alert and happy than Aaron wanted at that moment.

He looked at me with bleary eyes, no expression at all, and then flatly said, “I wanted a normal face.”

And I knew, as well as I knew that the sun was shining outside, that Aaron was very irritated. I mean, it was really pretty funny that he wanted a “normal face.” But I know him well and I knew that if I laughed then I would be in for a very rough morning.

So I just turned away…and therefore he couldn’t see my rolling eyes and my smile…and I made no comment. Sometimes silence…my silence…is definitely golden.

But my silence was also to him, at that moment, a cause for further frustration.

“How about if I tell Sarah about your face?!” he said with challenge in his voice.

Sarah is one of the staff at his day group. Aaron thought that I would not like him to tell Sarah about my abnormal morning face.

Oh, Aaron! Here we go, I thought. So I poured his coffee and escaped to my shower, door closed on both Aaron and his unpredictable anger. Thankfully, by the time I was ready to go a while later, he was over his mad spell and all was well. Plus, I don’t think Sarah ever knew about my weird face…but if she did, I’m sure she smiled behind Aaron’s back as well.

My friend, Wendy, texted me yesterday about her particularly rough time with their Elijah the night before. She went to see a play that her other children were in.

“I thought I had my props ready, the stage set, E primed and ready for our outing…but oh, no. It couldn’t be that easy.”

She went on to tell me that he wanted to take his hot chips and his balls into the theater, how he ran in front of a car, how he sat and very loudly crunched his chips, and how humiliated she was.

How I wanted to hug my friend!! How well I understand how she felt!!

We have had those terribly embarrassing and difficult moments with Aaron over the years. In fact, when Aaron attended the day school here for special needs students, we got a phone call one night from his amazing teacher. Mr. Z told us that Aaron had won the Student of the Week award for best exemplifying the classes’ word of the week, which I believe was “patience.” He told us that Aaron would receive the award the next day, and that he just wanted us to know about it before it happened.

Gary and I were amazed and thrilled!!! I felt like Aaron had won a Nobel prize!! I hurried down to the family room to tell Andrea and Andrew.

“Guys!!!” I excitedly started. “Aaron is winning the Student of the Week award tomorrow!!! Guess what the word of the week is?!!”

And without skipping even a beat, Andrea answered, “Hateful?”

We laughed and laughed and laughed. Of course, Aaron wasn’t there to hear any of this. But really, that was a true question. Andrea and Andrew had endured many experiences like Wendy described with Elijah.

At times, Aaron and Elijah just cannot stand to “feel the lines.” None of the rest of us mind the lines at all. In fact, we don’t even see the lines. But our boys do…and so do many, many others who struggle with the issues of autism, be it noises or lights or people or social situations or food or any one of dozens of other frustrating cues that only they see and feel.

So, if you’re out somewhere and you see a meltdown happening, and you see a desperate and exhausted parent, and very humiliated siblings – please don’t assume that this eruption is a result of bad parenting. Don’t assume anything. Just give a smile, lend a hand if needed or possible, show some understanding instead of judgment, and pray for that family as you walk away.

And know that in that paralyzing moment of public shame, every parent would look at you and say with Aaron:

“I just wanted a normal face.”

Happy, Helpful, and Forgiving

It’s beyond time for an Aaron update. I do believe I could write every day about life with that young man of ours. I wish I had that kind of time, so since I don’t, I’m sitting here wondering how on earth to corral my rambling thoughts on recent…or not so recent…Aaron antics. And not only his antics, but what those actions show about the real Aaron, deep in that brain of his.

Aaron has been mostly happy lately. He is showing that happiness in various ways. One way is by being extra helpful, so he’s been taking out the trash and the recycling; setting the supper table; carrying in groceries; and even helping others in ways that are…well…a little intimidating.

I saw that for the second time yesterday as we left Sam’s. We were walking to our van when Aaron spied a lady near where we parked, putting her items in her car trunk. She had a couple heavy packs of drinks. Before I knew it, Aaron was running toward her. I knew what he was going to do because he had done this same thing last week at Wal-Mart.

“Aaron!” I said. “Come back here!”

But he was determined to help this random lady. She looked up, a tad startled at first, but then she quickly relaxed when she saw Aaron.

“Hey!” Aaron blustered. “I’ll help!!”

She smiled and actually let him! Then she looked at me with a big smile, which made me very happy, as Aaron proceeded to put her two heavy drink packages in her car. She thanked him as he stood there with a huge smile, rubbing his hands together in his Aaron way, and then came back to the van. And I don’t know who was happiest at that point…Aaron, or me!

The lady last week at Wal-Mart was kind but said no to Aaron. So as I did then, I once again explained to Aaron that his offer was very nice but that he had to understand that running up to various women at their cars might be scary to them. Aaron thought this to be strange, even after I explained it to him. It’s so amazing that he doesn’t get it, that social norms elude him.

I had just seen this demonstrated a few minutes prior to the parking lot incident, while we were in the self-checkout lane inside Sam’s. A man in the other lane beside us was trying to get the attendant’s attention. She was talking to someone else and was unaware that this man needed her help. He continued to try to get her to notice him. What I was noticing was that this exchange was bothering Aaron. He was bothered by the fact that the man’s voice was rising, and he was bothered by the fact that the attendant didn’t hear him. Therefore, Aaron decided to be helpful once again.

“HEY!!!” he yelled out.

Well, well, well. This did get the attendant’s attention. And Aaron got a very annoyed look from her, with a raised eyebrow to boot. I apologized to her while correcting Aaron, and then she realized about Aaron, and she was kind and understanding, and Aaron’s face turned very red, and I have no idea what the irate man was doing.

WHEW!!!!

It was another teaching moment for Aaron, with me doing the teaching and Aaron looking around for someone else to help.

OK, where was I?

Oh yes, I was talking about how happy Aaron has been and how he shows it. He was so happy to see my good friend, Jennifer, in Sam’s that he gave her a big hug. Yeah. SO big and strong that I texted her last night to see if she was hurt. She said she’s not. Oh, Aaron! Just another social norm and boundary that Aaron doesn’t get.

Sam’s was pretty exhausting yesterday, can you tell?

In fact, by the end of the day, Gary and I were at the end…of our patience and our wits and our nerves. I don’t know, it was just such a tiring evening with Aaron. He wasn’t bad at all. But goodness, he LOVES to talk!!!!

That’s another way that he shows his happiness. Talking! Almost incessant talking!! He’ll be in his room for a few minutes and then we hear him barreling down the stairs. He finds us no matter where we are…outside, downstairs, in the garage, on the porch or patio, or in the bathroom. It matters not! Aaron has something to say and he WILL say it, even if he’s said it a million times before. You think I’m exaggerating? It certainly doesn’t feel like it to me and Gary.

We often tell Aaron that we just talked about this…that he needs to look that up on his computer…that we don’t have a clue about it…and we even throw up our hands as we say, “I DON’T KNOW!!!!” But Aaron is not easily deterred as he pushes on with his comments and his questions and his observations…over and over and over.

I wish I could say that I’m ever the wise and patient mom. I wish I could give examples of how to always be on top of these issues. But in all honesty…and I do try to write this blog with all honesty…I’m just not. Not always patient and calm and understanding, much as I want to be.

At the end of last night, when I was at the end physically, Aaron and I were in the kitchen. He was talking again and I was just so done. He, I thought, spilled a little water on the kitchen floor and that was it. I didn’t yell, but I talked through…I’m ashamed to say it…gritted teeth.

“Just clean up the water,” I said, in my “gritted teeth” voice.

I hurt Aaron’s feelings.

“Shut up!” he responded. More than once.

This prompted a stern rebuke from Gary.

Well, the rest of the evening went fine as Aaron and I went through his bedtime routine. But when it came time to give him his hug and a kiss on his cheek, he put his arms under his covers and said no. No goodnight. No hug. No kiss.

“Because you were mean to me,” he said.

So I left his room. But before long he was at my bathroom door.

“OK, Mom,” he said. “I’ll say goodnight.”

He walked into his room with me following. He got under the covers, held out his arms for my hug and accepted my kiss on his cheek. Bless his heart. He so wants our love.

Forgiveness is a big part of our life. We have to forgive each other a lot.

God forgives, too, and I’m surely thankful for that.

And God understands, as my dear friend Linda reminded me this morning. She understands this kind of weariness as she reminded me that Jesus often tried to get away to be alone…but the crowds still followed Him. I’m so thankful that God understands, and ever thankful for the forgiveness and peace He gives.

I’ll end on a funny note. I am sometimes amazed at how quickly Aaron can be irritated by me. I mean, really – ME?! Be irritating?

It is very puzzling, though, at what can set him off. Like the other morning, when feeding our Great Dane and fixing his pills in some peanut butter, I dipped into some peanut butter for myself. This really bugged Aaron.

“MOM!! You act strange!” he said angrily.

“How do I act strange, Aaron?” I asked.

He stared at me a minute.

“In lots of DIFFERENT ways!” he replied as he turned and walked away.

Now if that’s not the pot calling the kettle black! HaHa!!

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