Anger – He Said What?!

Mom, Don’t Be Sad

Blah! Bleh! However you want to spell it, it’s how I feel right now.

If we’ve learned one thing about Aaron, it’s that we’re always learning about Aaron. The autistic brain, as well as the brain changed by seizures…and let’s not forget the brain impacted by so many meds…is indeed a complex mess at times.

Aaron’s mess often makes me a mess.

I also feel like a Yo-Yo. Up and down…up and down…up and down.

Aaron had a cold last week and was home for a couple days from his day group because of it. On Friday he was out of bed and reluctantly ready for Paradigm when I looked down the hall and realized that he had gone back to bed.

Oh well, I thought. I guess it’s another home day for Aaron. I had a must-do trip down to the air base scheduled, so off I went, minus Aaron. But I was barely down the road when my phone rang, and there was Aaron, out of bed and ready to go to Paradigm. I turned around, picked him up, and off we went – his current CD of choice playing and a smile on his face.

What a relief to me to see him happy!

I told him about the pizza lunch that was scheduled, being careful not to use the word “party,” because Aaron doesn’t care for parties. I definitely didn’t tell him about the planned dance, either, because Aaron not only doesn’t like parties, he REALLY dislikes parties with dancing. It’s all just too much sensory overload for Aaron, despite the fact that Aaron himself causes plenty of sensory overload for those of us who are routinely living in his world. Go figure.

Aaron was still pleasantly happy when we pulled up to Paradigm. He was still happy when he called me later to give me a report on his day. And happy still when I picked him up later…an early pick-up just for fun and so we could make our Friday Wal-Mart shopping trip for weekend treats.

Aaron came to the van looking like this:

Chris, one of the staff, jokingly put some tape on Aaron’s mouth…and I can surely guess why…and Aaron loved it. He wanted to go into Wal-Mart that way, but stuffy mom said no!

Aaron immediately asked me in Wal-Mart if we could buy him an Xbox and I immediately told him no…as always. I reminded him that an Xbox is too expensive to buy for a weekend treat. Aaron asked if he could go to the electronic section to look around since he had no interest in looking at hair spray and make-up, so off he went with a reminder from me to NOT run!

I should have also reminded him to not bother any of the associates since I know that Aaron invariably finds an unsuspecting associate in their blue vest, and invariably asks them questions. Friday was no exception, as Aaron told me later what happened.

“Hey!” Aaron said as he pounced upon said associate. “Do you sell any CHEAP Xboxes?!” 😊 😊

Once home, Aaron helped me carry bags in the house. He helped me make spaghetti for supper. Never mind the broken noodles all over the stove-top. He was trying his best. He helped me make brownies, looking down at the bowl of batter and asking, “Is that the WHOLE brownie?!”

He set the table, took the recycling items to the garage bin, and learned a funny song to sing to Kyle the next day for his birthday. And after supper, he crammed spaghetti in his mouth and mumbled, “Send a picture to Andrea!!”

On Saturday morning, we called Kyle for his birthday and Aaron happily sang his funny song that he had practiced over and over in his monotone voice while on his computer: “Happy Birthday to you! Happy Birthday to you! You look like a monkey. You smell like one, too!”

And Aaron, who is often jealous of his new brother-in-law, rubbed his hands together in delight after he sang his song, and ran upstairs after laughing loudly.

That afternoon, while Gary worked on our extremely frustrating messed-up internet, Aaron and I went for a walk in Swanson Park. We saw beautiful Kansas prairie grasses.

We saw lots of very old, dramatic trees.

Aaron even happily posed for a picture.

But best of all, we got up close and personal with this gorgeous deer.

What a very fun, relaxing afternoon!

We finished the day watching a movie while eating supper, with Aaron totally delighted to eat his egg rolls as he watched a huge volcano erupt.

After church on Sunday, Gary had to get busy on our internet repair again, so Aaron and I scooted down to the grocery store for his favorite Cheddar Pasta Salad…and chicken…and drinks…and then doughnuts at Paradise Donuts down the road. But as the day went on, and especially while I was on the phone with Andrea, I noticed that Aaron’s happy brightness was fading. And after another movie that night, and one of his favorite television DVD shows, I knew that our happy time was over.

I just wish I knew why.

I really wish that Aaron knew why and could talk about it.

Asking Aaron to talk about his feelings or to verbalize his thoughts about these things would be like me asking him to walk up the stairs if he had Cerebral Palsy and was in a wheelchair. That’s how impossible it is.

And even though I kept telling myself that this very happy time would no doubt end, I still realized that deep down I dreamed that maybe it wouldn’t end…that maybe Aaron would see how much fun it is to be happy and compliant, and would want to stay that way.

It was like Aaron crashed. Like he went from being manic to being angry again, for whatever reason. He was just upset for no reason that I could see.

He said he was not taking his pills, but he did. He said he was not taking his CBD oil, but he did. He said he wasn’t going to bed, but he did. He said he wasn’t going to brush his teeth, and he didn’t do that. Of course. 😊

I just shut down, trying to stay flat and unaffected in order to not escalate Aaron’s unhappiness. He noticed my change every bit as much as I noticed his. He didn’t like it and wanted me to be happy even as he was anything but.

“Mom!” he said. “Don’t be sad!”

But if I tried to explain why I was sad he did not want to talk about it or to hear me talking about it…talking about how he had dramatically changed so quickly. No talking allowed. But no sadness, either.

Aaron was worried that I wouldn’t participate in our nightly routine, especially talking to him over the monitor from our bedroom after he was all tucked in his bed.

“Mom?” he asked over the monitor. “Are you going to say goodnight?”

So I did, half- heartedly, and he knew…but he thought that he should just be happy with what we had at that moment. And so did I. But once more before we were done, he said it again.

“Mom, don’t be sad.”

My tears came then when Aaron couldn’t see them. Tears of frustration and sadness. Tears due to the realization of how very much I loved our fun days, without any stress, and how much I wished they could last forever.

And having those happy days, only to have the anger re-emerge, showed me just how stressed I often am. I was so relaxed and content when Aaron was happy, but the instant stress again was a real blow.

Many of you reading this, in your own particular context, know exactly what I mean. The ups and downs of life take a toll. The good news and the bad news. The hope and then the dashing of hope.

Long term care-giving mamas, though, know it all too well. Balancing the moods, the environment, the activities, the meds, the decisions…and most definitely, the guilt for not thinking we’re doing it well enough.

Gary was right beside me last night, as always.

And so was God. He reminded me as I laid awake for a long time of His love for me and of His unending grace. Grace upon grace. Grace for me and for Aaron…and grace to give to me so I can give it to Aaron.

God’s strength is made perfect in my weakness. He never lets me down or leaves me to my own resources. He is forever there for me with that tangible comfort that only those who really walk with Him will know and understand.

In a real sense, these hard times…this Yo-Yo life with Aaron…keep me experiencing God in a way that I might not otherwise. For that I am thankful.

“Mom, don’t be sad.”

Aaron has no idea of how God uses him to teach me so much.

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!

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.

The Rat

It all started one recent night when our almost-broken DVD player became the totally-broken DVD player. Aaron and I were watching the next Blue Bloods show that was in Aaron’s rigid schedule for the evening. Aaron kindly paused the program while I went into the kitchen. Something about that pause became the something that pushed our ailing DVD player into its grave. Even Gary, our go-to he-can-fix-everything guy, came but could not fix. And as I watched Aaron’s frustrated reaction, I rightly guessed that he would also be very difficult to fix that night.

I was very correct on that one.

There are times when Aaron handles life’s interruptions of his routine with amazing calm and grace. That night was not one of those times.

I didn’t help, either. When Aaron became more belligerent, I became more frustrated. I don’t do end-of-the-day meltdowns very well, especially as I get older. I finally told Aaron not to be a bully. But I didn’t end there. I also told him not to be a bully brat. I thought it had a nice ring to it, you know.

Aaron did not think it had a nice anything.

Now we not only had to go to bed without finishing our Blue Bloods show, and knowing that the DVD player was dead, but we also had to walk up our stairs for our goodnight routine harboring anger. I could have made amends and gone right to bed with no problem.

Aaron could not.

And so began an age-old bedtime dance that we hadn’t done together in a long time. It basically consisted of Aaron refusing to do what is normally done and insisting on doing what is unacceptable.

His angry comments included:

“I am NOT helping put the oil in the diffuser!”

“I am NOT taking my medicine oil!”

“I am NOT saying goodnight to you!”

“I am NOT going to bed!”

“I am NOT letting you kiss me goodnight!”

“I am NOT a bully brat!”

I stayed as calm and flat as I could be in my reactions as I went about my own bedtime routine. Aaron continued his fuming by going into his room and closing his door, only to open it seconds later. He would stomp up the hall and come into my room, hurling another angry comment at me. One time he closed his door normally, but immediately reopened it so that he could slam it shut the second time. I had to smile at that one.

But I wasn’t smiling at any of the rest, for sure. I was sorry it had come to this…I was very tired…and I was totally aware that Aaron’s outrage could continue for some time. Therefore, I just went to bed, pulling my covers up and acting as if everything was normal. Gary had not come upstairs yet, so I left my door open.

Sure enough, Aaron clomped up the hall again and came into my bedroom. He didn’t even seem to blink as he saw me in bed and so changed his direction, standing on Gary’s side of the bed. He glared down at me under the covers and continued his verbal barrage. Then he was off, slamming his bedroom door before soon reopening it, and repeating the same action again and again. In my bedroom, hovering over the bed as he angrily talked, and off again. I don’t even know how many times this occurred.

Then all of a sudden, the next time Aaron hurried to my room to glower at me, he didn’t. He didn’t hover and glower, but instead he sat on the bed beside me. He started rubbing his hands together and then he said, “Mom, do you know what Nanomites are?”

Really. Nanomites.

And just as seriously as I possibly could, with no hint of surprise or laughter or tiredness, I told him that I did not know what Nanomites are. There we were, in the dim light, talking ever so diligently about Nanomites. We didn’t talk about our anger…our hurt…our frustration with each other…our disappointment in the dead DVD player…or our needed apologies. We talked about Nanomites.

And all was well.

Aaron went back to his bedroom. I stayed in bed, waiting. Soon he was headed back up the hall, but this time he came around to my side of the bed.

“Here Mom,” he said. “I want you to have this.”

A couple days earlier, I had taken Aaron to Dollar Tree. You would have thought I had let him enter heaven for a few minutes. He bounced from aisle to aisle, SO excited by his many finds, but definitely the MOST excited by this big, plastic, long-tailed, red-eyed rat!

WP_20180924_16_29_48_Pro

I rolled over in bed that night, and there on my night stand was that long-tailed, red-eyed rat. I knew as sure as ever, then, that things were right with me and Aaron. He had given me what at that moment was most precious to him…his black, plastic rat.

WP_20180928_10_53_01_Pro

He laughed and bent over as he rubbed his hands together…a sign of his pure joy. And I thanked him. I thanked him as sincerely as if he had placed a huge vase of roses on my night stand.

Aaron wanted me to come and say goodnight in the way we always do, so I did. Then as I was in my bathroom right after that, I heard Aaron once again walk up the hall. He knocked on the bathroom door, and when I answered he said, “Mom, I’m sorry.”

“I’m sorry, too, Aaron,” I replied. “I love you.”

“I love you,” he mumbled as he hurried off and back to bed.

I kept that ugly plastic rat on my night stand for a couple days. It reminded me of so much. It was an unusual picture of my relationship not only with Aaron, but also with God.

How many times have I been angry with God over a problem or a situation in my life? Maybe not even full-blown anger but frustrated and not trusting Him totally. How many times have I held onto hurt, or worry, or fear, or whatever else it may be that I want to harbor close to me. Things or people or events that I don’t want to relinquish to God?

All the going back and forth with God doesn’t accomplish a single thing. It’s only when I yield to Him and to His control in my life, tell Him I’m sorry if I need to do so, and then give Him my thing that to me is precious…that I want to keep and coddle…only then will I have true peace. Also, only then will I have open communication and sweet fellowship with God again. Only then will I see what’s on the new path upon which He has set my feet.

Who knew what that silly red-eyed black plastic rat would teach me?

Leave it to Aaron…and to God…to take the bad times and make them full of good.

	hesaidwhatks on I Did It My Way
	hesaidwhatks on Mom, Don’t Be Sad
	alimw2013 on I Did It My Way
	alimw2013 on Mom, Don’t Be Sad
	hesaidwhatks on I Did It My Way