Uncategorized – Page 29 – He Said What?!

Have a Tootsie Roll!

My writing about life with Aaron has taken a back seat lately. Actually, more like the back car on a very long train. Traveling over Thanksgiving and then returning to the mad rush of Christmas preparations have certainly been major factors. But there’s more to it than that.

I feel overshadowed. Living under a dark cloud of Aaron issues. Increased seizures…..medicine decisions……doctor visits. But even heavier than those concerns are the disruptions caused by his behaviors, which honestly have at times been far from nice.

Autism……family therapist…..psychiatrist……investigating alternative medical helps…….phone calls……meetings. It can get overwhelming sometimes. Keeping our cool can also be next to impossible, sometimes as impossible as understanding what makes Aaron tick. But we must understand that Aaron operates with a very unique mindset, without most of the filters that others have, and that he is constantly bombarded with sounds and ideas and stimuli that you and I never have to handle. His day group is a perfect breeding ground for noises and irritants and unusual people that can aggravate him quickly. We rarely see the behaviors at home that they see there. It can get messy.

Today I saw the side of Aaron that I wish he showed every day. It’s there…..just sometimes not seen as vividly as I saw today. Yeah, he got mad at a game this morning before we left for his dentist appointment. But he and I had a good discussion about it as we drove to the dentist’s office, where he also relished discussing his angry experience with the office staff, and with anyone else who had ears. He has no shame…..really.

As we left the dentist’s office, he gladly grabbed a cookie that was offered to him by the staff. And Tootsie Rolls that were in a bowl. Did he ever take Tootsie Rolls! I had no idea.

He ate one or two in the car on the way to Pizza Hut for lunch. The Pizza Hut buffet, heaven on earth for Aaron. All You Can Eat…..anything…..is heaven on earth to Aaron.

As we left Pizza Hut, paying for our All You Can Eat buffet……where Aaron really didn’t get to eat all he could eat because Mom stopped him way too soon……

Anyway, as we left and were paying at the register, Aaron pulled out yet another Tootsie Roll from his pocket. “Here,” he said to the smiling lady behind the counter. She was smiling because Aaron had tried to hide from me while I was in the bathroom. He was standing near the exit doors, peeking around the edge of the wall, grinning from ear to ear and then laughing loudly when I saw him. All of this in full sight of a banquet room full of people who were supposed to be listening to a speaker, but who were instead looking at Aaron and me with grins on their faces. Story of my life.

So Aaron pulled out the Tootsie Roll, handing it to the now laughing employee, and said, “Here. Because I liked the food today.”

When does he never like the food today?

But she was so happy to get his Tootsie Roll! She took it and thanked him, telling him that she loved Tootsie Rolls. Aaron was super pleased at her reaction.

“Look!!” he loudly said. “See how many I got at the dentist?!”

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Oh dear. He pulled out a whole fist full of Tootsie Rolls. All I could think about was the fact that the ladies in the dentist’s office probably saw him take that stash while my back was turned to Aaron. When will I learn to never turn my back on Aaron when there are cookies or Tootsie Rolls involved?!

I gave him the “Don’t Be a Tootsie Roll Pig” lecture on our way to TJ Maxx, while he unwrapped Tootsie Rolls and enjoyed his free dessert. He offered me one and I accepted, feeling like a hypocrite. I stopped the lecture. Shouldn’t talk with my mouth full.

We walked into TJ Maxx, where I told him that I was looking for a gift for Nora. Nora is my little elderly friend that I take out once a week. She was our neighbor for 15 years before moving to assisted living. Aaron knows Nora. Sometimes he’s been not so nice to her, but other times he’s tolerable. Today he surprised me.

“Mom!! I want to get Nora a Christmas gift!” he exclaimed. “Here!! I want to get her……this!!” And he grabbed the first thing he spied, a Christmas candle holder that I knew Nora wouldn’t need or want.

Aaron’s desire to get Nora a gift just made me very happy, so I told him that we would look for something. We were browsing in the perfume section when I heard Aaron talking to someone.

“Here!” he was saying. I looked over to see him offering the employee manning the dressing room……you guessed it……a Tootsie Roll!!

This young lady looked a little uncomfortable as big Aaron held a Tootsie Roll out to her. At first she declined his offer, but then for some reason she said yes. She looked at me with a smile and at Aaron with a smile as she accepted the Tootsie Roll. And Aaron laughed with delight as he bent over and rubbed his hands together, oblivious to shoppers who were looking and this new friend whose mind was full of questions, I’m sure.

It was really very, very sweet. Sometimes in these moments it’s tempting for me to be too embarrassed to enjoy what just happened. Today, though, I really relished what Aaron was doing. I loved it!! I loved how happy it made him to share with strangers. And how happy these strangers were to have received such a spontaneous little gift from unusual Aaron.

Aaron had not forgotten that he wanted to buy a gift for Nora. We looked here and we looked there, and finally I saw a perfect box of chocolates.

“YES!!” Aaron said when I showed him the box. “Let’s get that!”

Later, at supper, Aaron had a thought.

“Mom? Can Nora eat that chocolate?”

I told him she could…..that she loves chocolates.

“But does she have fake teeth?!”

I told him she does not have fake teeth as I tried not to laugh.

“Good!” he answered. “I thought she might have fake teeth and couldn’t eat it.”

Aaron wants to give the gift of chocolates to Nora, in person. I am quite sure that he will ask her if she has fake teeth. She still hasn’t forgotten how he once said that she was old.

See what I mean? No filters…..no shame.

But Aaron has a big heart.

Here. Have another Tootsie Roll.

I need to give the dentist a bag of Tootsie Rolls at my next visit.

Dad’s Bible

Eight years ago today we got the news that my Dad had stepped into heaven. And for eight years before that, Dad had fought a hard fight against the cancer that eventually took his life. So many stories of that time in our family…..so many memories of the month I spent with him and Mom before he died. I’ve written much about it in the past.

This past Thanksgiving our family gathered in West Virginia, in our hometown. Some still live there in Princeton. Others had far to travel. It was an epic gathering, really, and the first time many of us had seen each other in years. Mom and Dad would have loved it, we all found ourselves saying over and over. Wouldn’t they have been so happy that we did this?!

And look how we have grown. This picture was taken in the mid-90’s.

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The below picture was taken this Thanksgiving. Yes, we have multiplied! And we were missing a few who weren’t able to come!

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We had a wonderful time, all too short, of hugs and laughter and lots of talking as we tried to catch up with each other. The day was over all too quickly. As nice as it was, though, I felt like something was missing. It just didn’t feel the same. I realized, as I thought about it, that the something missing was actually someone who was missing……Mom and Dad.

In the past they were the center of everything. Stories…..laughter……teasing……singing. So much of that revolved around them, and now for the first time this very important part of all our lives was gone. That was the huge difference that I felt. It just wasn’t the same, and I guess it just couldn’t be without Mom and Dad there as our focus.

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I’ve been thinking today about Dad on this anniversary of his death. And remembering the very poignant part of our recent Thanksgiving meal when my brother, John, read to us out of Dad’s Bible. He told us this story before he read Psalm 145. In John’s own words:

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Regarding Dad’s Bible, it started on Thanksgiving of ’15, when I reached up to a shelf at home to get a Bible to read Psa 145 for our family. I knew it was Dad’s Bible, but didn’t remember that he had carefully marked his daily readings with the dates on which he read each section (including the introductory notes and the 500 pages or so of study notes at the end). When I looked at Psa 145, I noticed he had read it on Nov 26, 2000, exactly 15 years to the day before I was set to read it to my family. There was something about that divine intervention that touched me very deeply. When I got ready to read the same chapter to our family this year, the thought hit me to check his detailed medical journals to see what he was experiencing at the same time he was reading those passages of praise in Psalms. He was right in the middle of his radiation treatments from his first bout with cancer. He had already had the surgery to remove two-thirds of his right lung, and had already finished the grueling chemo treatments. Now as he took radiation, he was circling verses like Psa 116:6, 116:15, 121:7, 126:3, 127:3-5, 131:2a. 138:8, and 139:16. What a window into his soul to see the verses that God was using to comfort him, giving him hope and trust in the greatest challenge of his life. And so characteristic of Dad, he was not talking with everyone about this. It was a very intimate journey with his Lord that bolstered his soul as his body suffered. I found myself thanking God for the man he was, and wishing I could talk with him about that journey. I probably missed him more then than at any time since he had died. What a treasure, though, to have that record of his triumphant faith in the midst of adversity.

Isn’t that amazing? I’m so glad John shared that with us. Dad’s “triumphant faith in the midst of adversity” never wavered as his body wavered and finally succumbed to this disease that we all hate. Dad remained true to the Lord, to Mom, and to his family.

And now today we five children carry with us his heritage of faith, as do many of our children and grandchildren. I’m so very thankful for that! Of all the many things to be thankful for this past Thanksgiving Day, that would be one of the biggest.

We miss you, Dad, but we know we’ll see you and Mom again. Thanks for showing us the importance of following Christ, and for living out your own faith so beautifully and consistently.

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Glittery Moments

He Said What?!

My day yesterday, Sunday, began at 4:12….to be precise, like Aaron. Aaron had a seizure for the second early Sunday in a row. Then he had another at 5:45, so I just stayed up then, knowing that I wouldn’t be able to go back to sleep. This is a very busy, tiring time for everyone. To start my day off so physically tired wasn’t what I had planned, but as usual my thoughts went to Aaron and how awful he was going to feel when he woke up.

I heard him upstairs through the baby monitor later in the morning, stirring and stretching and then getting out of bed. I knew that he was marking his wake-up time in his notebook that he uses to record all that important information about his life. Later he slowly made his way down the stairs. I noticed that he had on a different…

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This is The Day……

Two years ago….and I needed to read this again today. “This is the day the Lord has made!”

He Said What?!

This morning I read about the death of one of my most remembered college professors……Martha Grace Green. Tiny little Mrs. Green was a powerhouse as she taught speech to hundreds of students over the years. We quickly learned not to underestimate her due to her size, for behind that small stature was a take-charge woman who taught us the proper way to give a speech……and to speak – (NEVER say each and every!!!)…….and also to live. For at the beginning of each and every class…..so sorry, Mrs. Green!…….the entire class recited Psalm 118:24. “This is the day which the Lord has made; we shall rejoice and be glad in it.”

Many memories of Martha Grace were coursing through my mind this morning as I went about my routine, getting ready to drive Aaron to meet his day group. I wasn’t at all surprised to…

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You Want Me Gone?

The other night, Aaron kept coming in our bedroom after we had gone through his bedtime routine and said our goodnights. Gary was already trying to go to sleep, and I wanted to do the same. But Aaron kept opening our bedroom door and then softly knocking on our closed bathroom door……as softly as Aaron knocks, which is about as softly as he whispers……which is not much.

“AARON!!” I hissed. “Why are you in our room?”

“I just wondered if you’re gonna have the monitor on,” he said.

“I’ve already told you I’ll have the monitor on,” I replied. “Now go to bed!”

Not long after, it happened again. Just repeat the above scenario, but this time Aaron said, “I just wondered if it’s going to rain tonight.”

I told him it was not going to rain…..and to go to bed, as I escorted him to our door, which I soundly closed.

Take three.

Same thing, except now he stood in the bathroom with me saying, “I just thought I could talk to you while you get ready for bed.”

The Mom look I gave him was all he needed, but still he just had to ask one more question.

“Are you SURE you want me gone?”

I assured him that I was sure as I yet again walked him to the bedroom door, closed it with one last goodnight……and locked it!

It’s been a rough couple of weeks with Aaron. Both his seizures and his behaviors have escalated…..seizures at home, behaviors at his day group, Paradigm. Another bad report this past Monday just took all the wind out of me. Gary and I feel like nothing is working, but something has to make a difference. We saw his caregiver at the Epilepsy Center this week, had labs drawn, will see his autism doctor before long, talked to friends who travel this road, are researching some options……and praying. Praying a lot.

I was so thankful for the verse that God gave me this week. The portion that meant so much to me was this phrase:

“DO NOT HIDE YOUR EAR FROM MY PRAYER FOR RELIEF.” (Lamentations 3:56)

It’s like that old story of the guy up in the tree with a coon, telling his friend on the ground, “Just shoot up her amongst us! One of us gotta have some relief!!”

It’s funny to hear that story…..not so funny to live with Aaron when he has so many behavior struggles that are severely impacting his happiness. But all of us need some relief, Aaron included.

When he and I got home on Monday, after such a dismal report from his day group staff, Aaron went to his room. Soon he walked up to me and handed me one of his sticky notes. Here is what he had written:

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Bless his heart. He really wants to do better, but finding that better is very difficult for him in certain circumstances. Really impossible at times, as his Epilepsy nurse and practitioner discussed with me on Wednesday.

That verse God gave me early in the week was perfect. We need relief, as many believers through the ages have expressed, and as many of my friends are experiencing now in their lives in very serious ways. The book of Lamentations is all about God’s faithfulness throughout the stresses and calamities of life on this earth. In fact, the following verse after the author begs God to not hide His ear, says, “You came near when I called on You; You said, Do not fear!”

Good advice…..great promises!!

The day after these verses spoke so much to me….the day after Aaron’s bad day at Paradigm…..this happened. I was out with my little elderly friend, Nora, when I got a text. This text was from my friend in Texas, Dona, whose husband had a terrible stroke 11 months ago. Dona and I rarely text, so I was surprised and a little alarmed to see her name appear. I instantly thought it might be about her husband, Steve.

But all Dona said was, “Are you doing OK?”

Wow!!

She had totally, absolutely no way of knowing what I was dealing with. We briefly texted, with her telling me that I had just been on her heart and mind. God at work, without a doubt.

I could hardly wait to get home and call her. We talked for quite awhile. She told me again that she kept thinking about me and so she prayed. I love it when God does these things! He shows His love and His care in these amazing, wonderful ways, blessing all of us in the process.

A day or two later, Aaron and I were in Dillon’s. We bought our few items, and then the cashier pointed to a large container of roses at the end of the conveyer belt.

“Would you like a free rose?” she asked.

And Aaron jumped on that like a flea on a dog!! He took a rose and then handed it to me, his face nothing but a huge grin.

“Here, MOM!” he boomed. “I want to give you a rose!! Because I love you!!”

And with that, he gave me the biggest hug! I thought my heart would explode!

The love note…..the rose……the hug.

Mixed this week with the behaviors…..some scary seizures…..doctor visits…..decisions looming.

It’s like Aaron bounding in our room at bedtime, just when we think that he’s settling in for the night. BAM!! There he is again, full of talk and excitement, no matter how tired we are.

“Are you sure you want me gone?” he asks. No, Aaron, not gone…..but resting. Go rest, and let us do the same.

His behaviors can be so very tiring. This past week has been emotionally exhausting for us, as well as physically. We could use some relief.

But we don’t want Aaron gone…..his personality and his take on life’s events to be gone. We just want him to be happy, and to know how to behave in a way that makes others happy, too. We have to keep working on that, and to keep trying to enable him to achieve that.

We’re praying for God to give us wisdom, and to not hide His ear from our cry for relief. I know He’s listening…..I know He cares……I know He’ll answer. He’s already impressed others to pray for us. That’s such an encouragement!

And when I look at my lone little rose in its vase, I’m reminded of Aaron’s love and of God’s love, entwined in many ways in my life. One so often shows me the other.

I just have to be making an effort to look sometimes.

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My View

I was in TJ Maxx with my elderly friend, Nora, last Wednesday when I got a call from Paradigm, Aaron’s day group. I was tempted not to answer it, figuring it was Aaron just wanting to tell me about his day. That could wait. But I wasn’t sure, so I did answer and I immediately knew that the news was not good. Aaron was on the other end, his voice thick and choked with anger and tears. Here we go, yet again, I thought. How I wish that Aaron could stay happy!

I picked him up as soon as I got Nora settled back at her apartment. Aaron was asleep, so I had time to talk to the staff, all of us scratching our heads as to what caused his angry outburst that morning……and what the solution could be. I found out from Aaron later what happened. He tried to give his good friend two McDonald’s coupons and she didn’t want them. She wasn’t being mean to Aaron, just honest, but Aaron felt rejected and very hurt, so he just had a total meltdown.

Thursday was a better day for Aaron. Then came Friday…..

I told Aaron that we would go out to eat when I picked him up at the end of his day. His choice. So he chose Denny’s, of course. He does love Denny’s. On the way to Paradigm, I talked to him about being nice…..being kind with both his words and his hands. About talking to someone if he was angry or hurt. He agreed with everything I said……until he walked into Paradigm.

I was waiting in the van after I dropped him off, waiting for him to come and tell me if they were going to a movie. But instead, out the door came one of his staff. She told me that Aaron had become verbal instantly with another client when he walked in the door. Then out came Aaron, yelling at this staff as he stood on the sidewalk. He eventually got in the van and off we drove. My anger and disappointment and great frustration spilled out in harsh words as we drove toward home. I was so mad at Aaron and mad at myself for being mad, and it just all boiled over.

I pulled into Denny’s, deciding that it might do us both good to be in a neutral place. Aaron sat on the curb before going in, saying that maybe he just shouldn’t go in to eat. I told him to come on and he did, but for most of the meal I just sat silent. I was exhausted and defeated and still battling my anger. Aaron was scared……scared because of all the people from whom he fears rejection, he fears it the most from me. He kept telling me that he loved me……kept trying to share his salad with me…..his crackers, French fries, chicken strips……even reached over, took my hand, and kissed the back of my hand. Yes, he really did that. I wonder who saw it, and what they thought of my lack of emotion?

We ran into WalMart after our meal, where I picked up food for Thanksgiving bags for church, and Aaron tried to help. I still felt numb, tired. After I checked out, I looked toward the bench where Aaron was sitting, and this is what I saw.

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Then my heart did stir with sorrow for Aaron as this picture of him was a picture of dejection, and his own tiredness. Oh Aaron, how I wish your life wasn’t so difficult and hard! And how I wish you could understand that you so often make it that way, and yet so often you can’t control the impulses you have that make you make it that way. It’s so complicated!

Aaron went right to bed when we got home. I went to the patio, baby monitor and my Bible in hand. I could listen for seizures while I spent some time unwinding and processing……reading my Bible and praying. I could hear Aaron’s steady breathing on the monitor as I breathed out my prayer to God, asking Him for wisdom to know how to deal with these constant ups and downs from Aaron.

I called my friend, Wendy, who walks this road that I walk. She understands and doesn’t judge. She offers counsel and advice, empathy and understanding. And I know that she prays for us, for Aaron……prays with love and care.

Aaron was awake then, coming outside to test the waters……to see if Mom was still distant and angry. He relaxed some when he could tell that I was better. He smiled when I said that we could take Jackson for a walk around the yard.

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We walked down to the back of our yard, around the huge evergreens that hide the very back loop of our property. It’s an area that is hidden from view as you stand on our patio or look out our windows. You would never know it’s there until you walk behind the thick trees that keep it hidden.

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I stood looking at the eerie sight. Branches of the old trees there hang low, gnarled together as they bend toward the ground. A finger of the neighborhood lake curls around under the limbs, still holding water since we’ve had such a wet summer. It’s a shadowy and dark place, a little creepy even. It’s interesting, but not warm and welcoming……not a place I want to linger for long.

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As we stood there, Aaron talking and Jackson sniffing the bushes and tall grass, it hit me that this is so much like our life with Aaron. Anyone who lives with a person who has autism…..or multiple seizures…..and takes tons of meds to help them…..knows what I mean.

Aaron is funny and smart and often kind. But he is also prone to angry outbursts where he is hurtful and unreasonable. For days we may mostly see the pleasant side of Aaron, but we know that hidden inside him is still the anger and the frustration that he feels, and sometimes releases. It is not a fun place, and it is not a place where we desire to linger. Yet sometimes Aaron makes us linger there as his brain is going through whatever his brain goes through at those times.

I know that mentally and emotionally I must walk away from the shadows that threaten to engulf me when I am overwhelmed by Aaron’s behaviors. He needs me, for one thing. And I need to stay whole and strong, loving and forgiving. It’s not easy, but I must. Friends and family help. A good staff at Paradigm helps. Gary is my biggest help, taking over when I can’t. And definitely, crying out to God helps the most.

Aaron and I turned from that scene, finally, and went back out into the open yard…..to the sunshine and grass……to the full view of our welcoming house. Likewise, given a little time, he and I returned to our normal relationship. I love him dearly. I know he needs me. He needed me when he had three hard seizures during the night on Friday. But he also needed me even more when he was out of control emotionally that day. He needed me to believe in him…..to discipline him……to try to help him even when he pushes me away……to care for him and to love him.

Behaviors are perhaps the hardest part of Aaron’s disability. They are frustrating, embarrassing, and exhausting at times. Families who deal with this need extra love and prayer. Staff who deal with this need the same, as well as frequent thank-you’s for what they endure.

Aaron’s behaviors hold him back in many ways…..and could easily hold us hostage in many ways, as well. But Gary and I know that we can’t let the dark times be our focus. Like the staff at Paradigm says, today is a new day and we start all over.

We don’t always get to choose our view on any given day, but we don’t have to stay forever where the view is scary and dark.

“Today is the day that the Lord has made! Let us rejoice and be glad in it!” (Psalm 118:24)

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Walking the Tightrope

He Said What?!

I heard Aaron on the monitor early this morning, a little after 5:00. I rolled over in bed so that I could hear better. No, it wasn’t a seizure. I listened for a couple more minutes and then knew that Aaron was awake. Not only awake, but it sounded like he was out of bed. Soon Gary got out of bed and went downstairs. Aaron popped out of his room when he heard the footsteps and said, “Mom?” But he knew it wasn’t Mom when he heard Gary’s voice, so he went back to his room while I listened again on the monitor. Soon I got up, too, and went down to fill my coffee thermos. I headed back upstairs and was in Andrea’s room, where my quite time desk is, and was quietly closing the door when once again Aaron quickly opened his bedroom door.

I was discovered! …

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I’ll Go Happy

Last Monday, Aaron had a rough and grouchy day at his day group. Sometimes we can pinpoint the cause and other times we just can’t. I’m so thankful for the understanding staff at Paradigm. I don’t know how they do what they do on some days, but I do know that they don’t get paid enough for all they endure on those days. I love their philosophy: Tomorrow is a new day and we start all over.

As I said goodnight to Aaron at the end of his rough day and gave him a hug, Aaron said, “Mom, tomorrow I’ll go happy!”

So on the next day, the new day in which we were starting all over, Aaron was indeed happy. His attitude was entirely different than the no good very bad yesterday. And on this better day we also got some wonderful news from our daughter in Houston. She has a break between jobs and was coming home for a visit!!!! Not only Andrea was coming, but also her boyfriend Kyle!!!! Not only Andrea and Kyle were coming, but also Andrea’s two dogs and Kyle’s dog!!!!!

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Can you tell I was excited? You bet! Aaron was excited, too. He loves and misses his sister. He’s getting to know Kyle and to realize that Kyle is a new part of our family. But oh, I know Aaron and I know that having a house full of people and pets can be challenging for him. We face this issue any time that we have extra people around…..extra noise……extra routine disruptions……extra attention grabbers away from our usual main attention grabber.

We work to prepare Aaron for those disruptions before they occur. I went over several things with him, like how he would use Gary’s and my bathroom while Andrea and Kyle were here. We talked about the dogs and how we need to act with having four dogs in the house. I tried to cover all the bases with Aaron, but Aaron brings out new bases quite often……based on what’s happening around him at the time…..things we just can’t predict.

I let Aaron stay home from Paradigm on the two Paradigm days that Andrea and Kyle were here. Aaron was SO happy with that idea!! He loved going with us to eat lunch at Freddy’s.

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He loved going for a walk in Swanson Park.

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He loved being here with us and the doggies.

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He loved us watching Independence Day Resurgence with him while he ate snacks and snacks and snacks.

He loved trying to sneak snacks and snacks and snacks to the doggies.

He loved talking to all of us, especially to Andrea and Kyle, about all his favorite topics. And this is where we usually start seeing some issues with Aaron, because Aaron doesn’t know when to stop talking. Sharing the stage is hard for Aaron. He truly wants to be included in our conversations as we sit around the dinner table, for instance. We do listen to him and try to include him, but Aaron isn’t going to talk about the subjects that we talk about.

Here is a sample conversation: We may be talking about Andrea’s new job or talking about Kyle’s summer at sea. Then Aaron will loudly call one of our names.

“Andrea!!” he says. When she responds to him, we often hear this from Aaron: “Ummm. Ummm. Ummm.” We wait. “Ummm. Did you know what the Queen Alien on Independence Day Resurgence looks like?!”

“No, Aaron, I don’t know what she looks like,” Andrea answers.

“Well, she looks like a…..I don’t know. Mom, what do you think she looks like?” Aaron asks.

So I try to answer but I don’t really know how to describe the Alien Queen because it’s been awhile since I saw that movie….and I don’t really care what the Alien Queen looks like…..and in trying to muster some enthusiasm and interest in this question that I’ve heard a hundred times, Aaron can sense a shift in my emotions. As much as Aaron struggles with social norms, he is very adept at picking up the subtle cues that we are not as animated about Alien Queens as we are about Andrea’s job or Kyle’s schooling.

He views our world from afar, wanting so much to enter in, but never knowing how. But he does express his frustration by comments that we later hear.

“Mom, you didn’t want to talk to me. You just wanted to talk to Andrea or Kyle,” he will say.

I try to explain that we do want to talk to him but that we haven’t seen Andrea or Kyle in so long…..and we want to catch up with them on their lives…..but to Aaron that doesn’t make sense. Round and round we go, and where we land nobody knows. Or when we land.

Which happened on Friday during supper. Andrea’s friend, Sarah, had come over to see Andrea and Kyle. They sat in the family room visiting and talking and laughing. Aaron was up in his room, then down in the family room…..up in his room, down again. He wanted to be a part and he was in many ways. He just can’t be the whole part and so conversation would swirl around him. Kyle was talking and laughing at one point, and Aaron whacked Kyle’s leg with a book. I heard it but didn’t see it. It was a sign of things to come. Aaron was frustrated now, truly frustrated, and when that happens he picks a target. Lucky Kyle.

I don’t remember all the details of what happened at supper. I was up from the table getting slices of cheesecake ready to serve. Aaron was at a boiling point and we didn’t realize it. His system was on overload…..his pressure gauge was maxed out…..and he erupted. He leaned forward and yelled at Kyle.

Aaron left the table. We apologized to Kyle. He was understanding and patient. Aaron came down later and apologized. We watched the movie later and Aaron was very happy, as if nothing ever happened.

Why do I tell you this story, one you’ve heard before if you’ve read this blog for very long? Because this scenario is just a very real picture of how Aaron processes…..or doesn’t exactly process…..the world around him. Our world is ticking along like normal, but Aaron’s isn’t. He is so impacted by nuances that we don’t even notice. Sounds…..loud laughter that he doesn’t understand…..hilarity……silliness…..his routine changing…. All these things greatly affect him, more than we can begin to know.

So he reacts, usually loudly and hurtfully. Then he’s sorry. It takes great understanding, as I’ve said, to deal with this about Aaron. He doesn’t think like we do or process as we do or react over time as we do.

But he truly wants to.

Andrea and Kyle left to go back to Houston the next day. Aaron was with us in the driveway, entering into things, when Andrea asked for a hug. Aaron ducked his head and walked away, through the garage and into the house as he muttered to himself. A hug in front of everyone? Are you kidding me?! We know this about Aaron and it makes us smile. He can yell, but spontaneous hugs are very, very difficult.

One of the first things I did after they left was to get Aaron’s things put back in his bathroom. “Us kid’s bathroom,” he calls it. We got his cup with his toothbrush and toothpaste put back on the counter. We got his body wash and wash cloth back in the shower. We hung his towel on the towel rack.

Aaron then noticed that his razor attachments were not in the correct place. He rearranged them the way he wanted them. He stood back and observed the counter for a few seconds.

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Then he said, “OK. It’s looking good.”

That night at supper, Aaron asked the blessing. He nearly always says two things when he prays. He doesn’t say the same thing with each prayer, but he says two things. On that night he said, “Lord, thank you for the food. And thank you that Kyle and Andrea got to come.”

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Yes, it was looking good now for Aaron. He was happy that Andrea and Kyle were here, along with Darcy and Oakley and Aries and our own Jackson. He will be very happy when everyone comes for Christmas.

Aaron will have every intention of saying, “I’ll go happy!”

He’ll go happy into our family time, but it will be a time of upheaval for him and of struggle as well. It’s up to us to understand that and to allow that for Aaron, all the while trying to help him know how to take time to decompress and not to blow up.

Only when things are back to normal…..Aaron’s normal…..will he be able to step back and say, “OK. It’s looking good.”

And it’s very important for us to be able to look at Aaron’s world through Aaron’s eyes, and still be able to say, “OK, Aaron. It’s looking good.”

Let’s go happy! It’s sometimes the hard choice, but always the best choice.

Pass The Kleenex

Aaron has just recovered from a nasty virus. It was nasty in more ways than one. He felt terrible. He had a stuffy head. He had a sore throat. He ran a fever. He had some seizures. All of this is definitely nasty. But there is another level of nasty with Aaron when he has a cold……a level that I have written about in the past.

Aaron would not blow his nose. We’re not totally sure why he won’t blow his nose, but he just refuses. Therefore, as I wrote before, Aaron snorts. It’s very disgusting and annoying. Nasty. For me, for Gary, and for anyone else within hearing distance.

I told Aaron over and over how much better he would feel if he blew his nose. I finally resorted to telling Aaron over and over how much better his dad and I would feel if he blew his nose. Aaron wasn’t particularly interested in how we felt, however, so the snorting continued. He wasn’t even interested in the fact that blowing would help HIM feel better.

Until finally, one day, my words got through to Aaron’s stuffed up head. He blew his nose. He actually, for real, blew his nose. I praised and praised him as if he was a small child who had just gone potty for the first time. He looked at me as if I was an irritating gnat, so I backed off the vibrant praise and tried to be very flat and factual, which Aaron much prefers.

“Good job, Aaron,” I said with a level voice. “Doesn’t that feel better?”

“Yeah,” he said as he walked away.

The next time he blew his nose, I asked to see the Kleenex. He knew then that I had surely lost my mind, but I told him that the color of the mucus could tell us if he had an infection.

Sorry for being gross.

But Aaron held out the Kleenex very gingerly and I peeked at it, made a comment…..we don’t need details……and off Aaron went.

Aaron marked that information down, though, as a way to keep reminding us that he wasn’t feeling well. When he’s sick, we hear over and over the same four word comment from him: “I’m not feeling well.”

“Mom!” he said soon after the mucus color test. “I blew my nose and it was GREEN!! That’s how I’m not feeling well!”

I wanted to tell him that’s how I’M not feeling well now!

I heard a lot from that point on about green nose stuff. We were still in a nasty mode, but at least it was in a Kleenex now.

Speaking of……Aaron did with his nose blowing what he does with everything in his life. He developed his own way of doing this task.

He had to have a box of Kleenex with him at all times. Not a few Kleenex, but a box. A box at his desk. A box on the end table beside his TV chair. A box on the kitchen table while we played Skip-Bo. A box on the nightstand beside his bed at night.

And not only a box of Kleenex. He also had to have a trash can in which to place the dirty Kleenexes after blowing. And not just any trash can. It had to be his trash can from his room. His trash can beside his desk. His trash can beside his TV chair. His trash can beside the kitchen table while we played Skip-Bo. His trash can beside his bed at night.

When he finally felt better and was able to return to his day group, he was still needing to blow his nose. By now his nose blowing was routine for him, but also done in just his routine way. So he told me that he needed to take a box of Kleenex with him to Paradigm on his first morning back. I agreed, and Aaron was very happy about that, as you can see.

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He marched into Paradigm that morning, box of Kleenex in tow, ready to start his new week.

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“Barb!” he said as he barged into her office. “I’m blowing my nose! I brought a box of Kleenex!”

Barb laughed and I explained. She knows Aaron well enough to understand that this was a big moment for him, and to not question the box of Kleenex.

I was just thankful that Aaron didn’t insist on taking his trash can!

Aaron has blown and blown and blown this past week. We hope his nose blowing hang ups are a thing of the past. We definitely hope that his snorting is a thing of the past!!

And once again we just watch as Aaron decides to own something like this…..and to really make it his own, in the unique way that totally suits him.

Gary and I are once again along for the ride, shaking our heads and laughing when Aaron can’t see or hear us. Even something as mundane as nose blowing becomes a picture of just how unique Aaron is.

Pass the Kleenex.

The BOX!!

Black Lettuce

There are some things that I can always count on with Aaron. He will always write down the time he gets up in the morning and the time he goes to bed at night. He puts these times in the notebook that he keeps by his bed, on the floor. Always on the floor. He will always only read at night. He will always keep his tennis shoes on his floor in front of his trash can, placed just so-so. He will always ask at night if it’s going to rain and if I’m going to have the monitor on, to listen for seizures. He will always want four cups of coffee in the morning (they’re not full, but there must be four!). He will always finish a song we’re listening to before he gets out of the van. And he will always want a house salad when we eat in a sit-down restaurant.

In fact, as soon as his bottom hits the seat…..before our host or hostess can say a word…..Aaron looks up and says, “Can I have a house salad?!” So I have to run interference and rescue the confused host or hostess by telling Aaron that he needs to wait to order his salad.

When the host or hostess comes back with our water, Aaron once again looks up and asks if he can have a house salad. Never mind about ordering his meal. His salad is of prime importance, and once it is ordered…..with Ranch dressing and no croutons…..then he can get on with the business of looking over the menu and making his meal decision.

A couple weeks ago, as Aaron ate his house salad in IHOP, he said, “I like this salad. The lettuce is black and yellow.”

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I smiled and thought that of course the lettuce looks black and yellow to Aaron. He’s color blind, and so not only did the lettuce look black and yellow to him, but black and yellow lettuce made perfect sense to Aaron.

Just like so many other things in Aaron’s life, I thought. We don’t see it quite like Aaron, but to Aaron his view of things makes perfect sense. The rest of us are left to figure those things out and understand them.

Here are some recent examples:

THE SATELLITE CLOCK!

It’s actually a satellite weather station that Aaron had on his desk. He loved it. He especially loved the precise time it kept, and the display of the outdoor and indoor temperature. He kept a close eye on those temperatures. One Saturday morning, Aaron came downstairs, looking troubled.

“Mom,” he began. “My clock says that the temperature is 13!”

I knew he meant the outdoor temperature, because that’s the only temperature that he keeps track of. Since it was summer, I also knew that something was very wrong with his weather station. And since something was very wrong with his weather station, I knew that something was very wrong with Aaron’s world. Since something was very wrong with Aaron’s world, I knew that something was about to very wrong with Gary’s and my world. That’s how these issues work. A domino effect, you know.

The planet was definitely out of kilter for the remainder of that day. Aaron came downstairs repeatedly, telling us that the temperature was wrong. I finally asked, “Aaron, can’t you just ignore the temperature?”

Aaron looked at me with no expression, but I could see that he thought I was very off balance. “Aaron, can’t you just ignore the temperature?” I asked again.

“No,” was all he answered as he turned and walked away. Life had become very hard for Aaron at that point.

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Gary worked on the outdoor sensor, to no avail. Later, Aaron came back downstairs and told me that he wanted to take a nap. I agreed, and he started to walk away. But he stopped, turned around, and said, “I would take a nap. It’s just that my clock says 97.”

So the temperature had jumped from 13 to 97? Neither of those temps was correct, as Aaron knew all too well. However, I assured him that he could really take a nap regardless of the temperature on his clock.

He turned to walk away once again, but once again stopped. Turning around, he said, “I would take a nap, it’s just that……” What he left unspoken spoke volumes. It’s just that his clock was sitting on his desk showing the wrong temperature, and to Aaron that clock was screaming, “ALL IS NOT WELL IN YOUR WORLD!!!! WE NEED TO MAKE IT RIGHT!!!!”

Bless his heart, Gary made it right. He ended up buying a new clock that shows the outside temperature, and now all is well.

THE TV SERIES!

Aaron got all nine seasons of The X-Files for his birthday and for Christmas last year. He finally, after several months, finished watching all nine seasons. But then one day in Wal-Mart he found the new tenth season. He still had a Wal-Mart gift card, so I let him buy season 10. Those of you who know Aaron well can guess what happened.

Aaron had to start watching the whole series again, beginning at season one. You don’t simply watch season 10, people. You must watch the series in order. Season 10 must come after season 9, which comes after season 8, which comes after……

You get the idea. He had to watch the whole series again.

The WHOLE. SERIES!!!!!!

I think he’s just beginning season five right now. I so hope there is not a season 11.

THE EXPIRED COUPON!

Aaron cuts out my coupons that are in the Sunday paper. He is extremely meticulous, trying very hard to cut only on the dotted line. No shortcuts are allowed. He is sure that he is the only person in our house that cuts coupons correctly. We have lots of coupon stories that we could tell.

Anyway, the other day I was taking expired coupons out of my coupon box. I had a pile of coupons that were of no use any longer. Aaron walked in the kitchen and spied the pile of coupons. He asked what I was doing with them, making me feel like I was partaking in something forbidden. So I explained that I was sorting out the expired ones.

“What are you going to do with them?” he asked suspiciously. I told him I would throw them away. He stood over me staring at the coupons that I was laying out to be tossed in the trash. That’s when he saw it……the coupon that somehow was not exactly cut on the dotted line. I’m sure he thought it was one that I had cut out, since he knows that Mom is a very sloppy and careless coupon cutter. He reached over and gingerly picked the offending coupon out of the mess laying there.

Then he went over to the kitchen drawer, opened it and took out his scissors, walked back over to me, and began to cut that coupon on the dotted lines…..the way it was intended to be cut!

He didn’t care when I reminded him that I was just throwing that coupon away. He didn’t care when I told him that the coupon was expired and of no use anymore. He didn’t care that I told him he was just wasting his time. He continued to carefully cut off the extra little strip of paper and let it fall into the pile of expired coupons. Then he took the coupon that he had just corrected, laid it on the rest of the coupons very methodically, put away his scissors, and walked away as if all was well with the world.

Because for Aaron’s world, things were made well at that point.

Silly Mom.

THE ICE CREAM!

My last example…..for now…..is Aaron’s bowl of ice cream. This past Friday night we were getting ready to watch a favorite TV show, Blue Bloods. Aaron was with me earlier in the day as we bought some groceries. I bought him some Mint Chocolate Chip ice cream that he wanted, so before Blue Bloods started he asked if he could have a bowl of his new ice cream. I got his ice cream and handed him the bowl as he sat in his favorite family room chair.

I was in the kitchen for a few more minutes. When I walked back into the family room, there sat Aaron is his chair……but he wasn’t eating his ice cream. He had placed the bowl on the ottoman in front of him.

“Aren’t you eating your ice cream?” I asked him.

“Not yet,” he told me.

And it hit me. Aaron was doing with his ice cream what he also does with his popcorn at the theater. He was waiting for Blue Bloods to begin before he would pick up his bowl and eat his ice cream. I watched him. Sure enough, the second that Blue Bloods began, Aaron reached over and picked up his bowl of ice cream. He ate every bite and loved it…..but not until it was just the right time to do so.

You see, life for Aaron has certain rules. He doesn’t walk around explaining those rules to us, but we’ve come to know them well since we have lived with autism for so long. Someone else wouldn’t get it at first, but trust me when I say that Aaron would educate them soon enough……and at times maybe not so kindly.

Strange how he has precise coupon cutting and ice cream eating rules, but his rules of etiquette and relationships can be sadly lacking. How he can’t nap when his clock is showing the wrong temperature, but he can sleep soundly at the end of one of his rough behavior days. How he will take weeks and weeks to re-watch X-Files so that he can keep the seasons in order, but saying a simple “I love you” is so difficult for him.

It’s just like his salad with the black and yellow lettuce. Sounds pretty weird to us, even yucky, but not to Aaron……because that’s just how he sees it, right there in front of him. The salad tasted fine, no matter the color. And the taste was what mattered to him.

So Aaron’s ordered world is what matters to him, too. Ordered in his way that he understands, because that’s just what he does and it’s really all he can do. He’s come a long way and made lots of improvements, but Aaron is Aaron.

And sometimes we’re the ones who need to improve, honestly. Improve in our acceptance and our understanding of Aaron, not expecting him to bend to us but instead be willing to bend to him. Our way isn’t always the only way, in many areas.

But I draw the line at black lettuce. Not gonna do black lettuce.

Yellow, maybe……but not black.

Well…..maybe just a taste. It might surprise me. ♥

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