Patty hesaidwhatks

Who Is Aaron Supposed to Be?

I love this picture I found on FB this morning.

13900163_10209370680451285_5172682924664753419_n

Aaron certainly has opened our eyes to a whole unique and special way of viewing his world…..which becomes our world as Aaron pulls us in, willing or not. It doesn’t matter to Aaron if I am busy or tired or embarrassed or if I’ve heard or seen the same thing a zillion times. To him, each experience seems refreshingly new and fun and definitely shared.

Like yesterday at the grocery store. I decided to run back to the produce section after I saw the pretty cantaloupes in a fellow shopper’s cart. Aaron loves everything about the grocery store, except maybe for the aisle with toothpaste and body wash. If you lived with him awhile, you would see that those items are not a priority or an interest of his. Unfortunately.

Anyway, I was examining big round cantaloupes while Aaron was pointing out the cool, spritzing water that was spraying over the vegetables nearby. You would think that this was the first time he had ever seen this gentle spray, but it isn’t. It’s probably the 753^rd time I’ve told him what it is, but he was as excited as if he was seeing it for the first time.

I turned and headed for the registers after deciding against any cantaloupes. I knew that Aaron was lagging behind. I was already in the florist section when I turned to look for Aaron. There he stood, large and loud Aaron, holding up an artichoke. His face was just a huge smile as he held his prize up for me to see. I had to smile, too, standing there among the sunflowers and daisies. What is it about artichokes that always, always grabs Aaron’s attention? We have examined them, cooked them, and researched them…..but still Aaron will find those artichokes and hold one up for me to see as if it’s the very first artichoke that we have EVER encountered.

I smiled and then shook my head no as several surrounding people were turning their heads to see who Aaron was showing his artichoke to. I could see them making the connection……wondering, I’m sure, about Aaron.

Maybe if we all saw our world through Aaron eyes, we would smile more and laugh louder and keep our curiosity sharper, even as we age.

So let me share with you a few snapshots of Aaron in his world.

Making a funny face while we played Skip-Bo, trying hard not to laugh:

WP_20160724_21_54_37_Pro_LI

Putting a clothes pin on his earlobe, which is totally nothing new…..but you wouldn’t know that if you looked at how intense and serious he was on this night.

WP_20160730_21_40_38_Pro_LI

Playing Skip-Bo, knowing that Mom is looking out with eagle eyes for his cheating attempts.

WP_20160802_21_39_54_Pro_LI

Waiting for me to go through the Wal-Mart line, and smiling like this when I looked up and saw WHERE he decided to wait……the chair at the bank desk.

WP_20160719_13_09_54_Pro_LI

Noticing after he got his teeth cleaned that the digital clock on the counter was flashing. “Your clock is destroyed!” he exclaimed as he pushed by his hygienist and tried to fix the clock. Incorrect time is intolerable!

WP_20160808_10_52_30_Pro_LI

Recovering from three strong night seizures. We had to cancel his therapy appointment, which to Aaron meant cancelling our lunch plans. I was nervous about taking him into a restaurant, fearing another seizure, so instead we went through the drive-through window at Little Caesar’s and got him pizza AND breadsticks. He was happy. I was happy.

WP_20160811_12_40_59_Pro_LI

And finally, sunflowers. Aaron has wanted sunflowers for such a long time, so this summer while I was in Houston to see Andrea, he and Gary planted sunflowers around our garden. He has watched them grow and grow and grow, until now they are much taller than he is. Now he can’t wait for them to bloom. He was looking at the sunflowers one day when they were much smaller. “When are they supposed to be the size they’re supposed to be?” he asked.

WP_20160813_10_16_47_Pro_LI (2)

I smile at the way he phrases things. His unique way of expressing himself is a big reason I started this blog. I can remember wondering, when Aaron was much younger, how he would turn out. In a sense, I wondered when Aaron was supposed to be the Aaron he’s supposed to be – to borrow Aaron’s wording.

Well, Gary and I pretty well know that Aaron is now the Aaron he is supposed to be. Some days that can be discouraging, I’ll admit……on the seizure days or on the hard behavior days or on the days when we are tired and really don’t want to see another artichoke. Yet Aaron is who he is supposed to be because he is who God created him to be.

But God gives grace when we need it the most. He really does. I don’t think I even realize sometimes in just what forms His grace comes to me. Yet I do know, often in retrospect, that making it through the frustrations……the fears……the failures…..is the hand and the grace of God upon us.

And I am so thankful that God gives me pause more times that I can count……moments to pause and enjoy Aaron’s world through Aaron’s eyes.

So you see that the sunflower in the above picture is just too perfect. Aaron is waiting for his sunflowers to be the size they’re supposed to be and to bloom. Gary and I see that Aaron is who he is supposed to be, and that every day he blooms in our lives, teaching us to see the world through different eyes.

I pretty well know, too, what Aaron would say if he looked at this sunflower picture. “What?!” he would probably say. “That sunflower is wearing shades!!”

Better to see you with, Aaron. Better to see you with.

My Mom is Weird!

I haven’t done much writing lately for various reasons, a big one being that I had thumb surgery recently. This clunky splint makes typing a little difficult. My immobile, fat wrapped thumb keeps wanting to hit the space bar, so now you will understand if you see unnecessary spaces here and there that I don’t catch. The backspace key is my friend!

WP_20160729_14_06_13_Pro_LI

Gary has been taking excellent care of me, and taking up the slack in areas that I still can’t manage. Even faithful Jackson seems to have been concerned for me at first. I think now he’s just used to the new me.

WP_20160728_19_45_27_Pro_LI

But Aaron…..dear Aaron……has mostly been worried about……Aaron. Oh, he’s shown a little empathy. That’s not really the right word. He’s shown a little interest in my condition, but showing a great deal of care doesn’t come naturally to Aaron. But the times that he does express care are special indeed.

He was very happy that he got to stay home on the day of my surgery. “When you go to take your surgery,” he had asked the day before, “do I have to go to Paradigm?” Gary and I were at the surgery center very early, so neither of us could drive him to Paradigm. He loves staying home for whatever reason, so I think he was secretly happy that I had surgery because it did benefit him on that day.

He eyed my left hand suspiciously when I got home. I knew he was uncomfortable so I just tried to act normal and put him at ease. But when I laid down in bed in the middle of the morning, he was very uncertain. He understood, of course, that I had surgery. But he did not know how my surgery would affect our normal routine……and therefore affect him, greatly.

I kept the bedroom door open as I rested in bed. It wasn’t long before I heard Aaron walking up the hall from his room to my room. I just kept my eyes closed. Aaron just stood at the bedroom door, not speaking, but I could feel him staring at me. He stood there and stared for awhile before he turned and walked back to his bedroom. He was exhibiting his uncertainty.

It wasn’t very long before I heard his familiar steps once again in the hallway. He stood once more at my bedroom door for a few seconds.

“What’s for supper?” he finally asked.

I told him there was plenty of food in the frig to choose from so he could have his pick. It wasn’t really the answer he had hoped for, I knew. He thought something along the line of pizza or a sub would be far better. My hand surgery wasn’t working to his advantage as much as he had hoped!

But he was very happy that Gary brought him a cheddar pasta salad when he went to pick up my prescriptions from Dillon’s. This surgery might work out after all, Aaron thought.

And soon I heard him walking heavily up the hall again. No need to walk softly when there are matters to address that are very important. I just waited quietly while he stared at me.

“Are you watching Wheel of Fortune?” he asked.

No asking how I was feeling. No wanting to know if he could bring me something. No queries about my surgery. And no surprise from me. Aaron was uncomfortable and he wanted Mom to be Mom again, surgery or not.

I told him that I imagined I could watch Wheel of Fortune. Later that afternoon, I went down to sit on the couch. Aaron sighed when I asked him to carry my pillows. He was seeing that this surgery would take a toll on him and his routine after all.

We watched Wheel of Fortune that evening, and Aaron was happy. He didn’t seem to notice my pain pill drowsiness. He was just very happy that we could have this normal part of our day restored. He was not so happy, though, to hear that playing Skip-Bo was going to be questionable for a day or two.

Later that night, Aaron walked with purpose into the kitchen where I was standing. “Mom! Here!” he said. “I brought you something since you had surgery.”

Surprised, I looked in his outstretched hand and saw that he held two yellow gumballs. He had gotten them from his jar of gumballs in his room. Usually he tells me I can have one gumball, and on a rare occasion I can have two. This gift of TWO gumballs, then, was a true gift from his heart.

WP_20160729_09_43_56_Pro_LI

I thanked him and then put them on the counter. “No, Mom!” he said. “Hurry and eat it before it becomes tomorrow!”

So I had to smile and I had to “eat” the gumballs immediately. I didn’t exactly feel like it, but I did chew those gumballs until all the taste was gone as I relished the kindness that Aaron had shown in his own Aaron way.

Life returned to a measure of normalcy fairly quickly. A couple days after my surgery I even drove Aaron down to Great Clips for a much needed haircut. As we sat in our chairs waiting for his name to be called, I showed him how I was to exercise my fingers that were protruding from my splint. I tried to be funny as I bent my fingers, saying “Up, down, out, in!” as I bent them back and forth. I should have known that Aaron wouldn’t appreciate my humor.

“You’re weird, Mom!” he said. And then he looked toward the hairdressers and very loudly said, “My Mom is weird!! She had surgery and she’s weird!!” What do you do when all eyes turn to you and your son? Laugh! And hope they don’t agree with Aaron!

Aaron has done really well with this whole “Mom had surgery and she’s weird and I want things back to normal” business. He has actually been helping with carrying and setting the table and bringing in trash cans and other things, much more that I thought he would. He had a very grouchy week at his day group last week, though, and I don’t know if all this was part of why that happened or not. Sometimes we just don’t know with Aaron.

And we have been playing Skip-Bo again. Gary shuffles the cards for us and off we go! Aaron sometimes acts like his silly self. See the clothes pin on his ear?

WP_20160730_21_40_38_Pro_LI

But he plays with the intent to win, realizing that Mom still can watch for cheating even with a splint on her hand!

WP_20160802_21_39_54_Pro_LI

The other night he once again strode downstairs to find me on my computer. “Here, Mom!” he said. “I saved this for you.”

I looked at his bowl that he held toward me and saw it. One lone little fruit gummy for me to eat.

WP_20160729_13_03_45_Pro_LI (2)

It’s not the size of the gift that matters, but the heart behind it. It’s true not just for Aaron, but for all of us. Sometimes I have to look hard for Aaron’s gifts, but they are there, sweet and honest.

Brutally honest sometimes (weird Mom!)………but that’s Aaron!

Our Nest

He Said What?!

I remember being pregnant with Aaron and hearing the term “nesting.” I wondered if that phenomenon was really true, and later discovered that it certainly was. I had the rush of energy and the desire to get our nest in order before Aaron’s birth – and he was three weeks early! Interesting!

I find myself considering our nest again, but now on the other end of the spectrum. Goodness, how time flies! And now I sound old even in just saying those timeless words about time. I don’t really feel old, but soon our nest will be a little emptier, and I know that the years have rushed by much faster than I ever dreamed they would when I was knee high in diapers and runny noses.

Tomorrow, barring any delay, Andrea will officially be moving to her new apartment. She’ll only be an hour away but the distance isn’t what…

View original post 944 more words

Our Nest

I remember being pregnant with Aaron and hearing the term “nesting.” I wondered if that phenomenon was really true, and later discovered that it certainly was. I had the rush of energ…

Source: Our Nest

Giving Away Kindness…..Aaron Style

In the last blog I wrote about Aaron, I talked about how much it means to us when others treat him with kindness. Simple Kindnesses Even the smallest kindness shown to Aaron is just huge to us, and to him.

On the flip side of kindnesses being shown to Aaron is the issue of Aaron showing kindness to others. Sometimes we’re happily surprised at how Aaron will be kind to others. Sometimes we’re sadly embarrassed at his total lack of kindness. We never know what a day will hold. We never know what an hour will hold. We actually never know from minute to minute what Aaron will display toward others.

Aaron is pretty self-centered, which is common for those with Asperger’s. Empathy doesn’t come naturally to him most of the time. For instance, if I’m crying it makes Aaron either angry or scared. He doesn’t ask what’s wrong or ask me if I’m OK. Instead, he might make fun of me or get very agitated. I know that about him, so I try to never let him see me cry. I can’t invent that sort of empathy in Aaron, try as I might.

Therefore, when Aaron shows that he cares about someone, those of us who live and work with Aaron are delighted. I wrote a few months ago about how I saw Aaron walking to Quik Trip with his day group. Pictures of Kindness He purposely waited to be the last in line so that he could walk with his friend, S., who is in a wheelchair. It melted my heart to see that about him.

We make it a purpose to help Aaron see practical ways that he can be kind. For instance, when we eat out I make sure that Aaron always says thank-you to our server. The same goes for thanking those who help us at Wal-Mart or the grocery store, Great Clips, or anywhere else we go where we receive assistance from others. I don’t think Aaron would do that by himself if we didn’t remind him over and over to do so. Verbal kindness is very important to all of us, and we want Aaron to be verbally kind to everyone. Trust me, sometimes his verbage is anything but that, yet we have to keep reminding and reminding.

A couple weeks ago, when I went to pick Aaron up at his day group at the end of the day, one of his staff came out to tell me that it was a rough day with Aaron. I still feel like the parent of a disobedient, still learning kindergartner on those days. Yet we need and want to know what’s going on so that we can help deal with it and address it at home. A couple days later, this same staff headed for my car as I waited for Aaron. Aaron ran behind her, all smiles, and opened the passenger door with gusto as I rolled down my window to talk to Melinda. I was dreading what I would hear, but right away I was all smiles like Aaron as I listened to Melinda tell me that Aaron was awesome and wonderful and fabulous, and all other sorts of affirming adjectives. I think I was happier than Aaron was to hear those words!

And there on Melinda’s shirt, like a name tag, was a note that she pointed out to me…….a note that Aaron had written. It said, “Melinda is cool.” She was wearing it with pride, all the while confirming to Aaron that sweet behaviors bring sweet rewards of praise and smiles. Aaron had written a note to another staff that day as well, on her calendar. It was just extra sweet and funny.

At his day group, Aaron also loves to give things away. We’ve really had to work with him to quit giving away his money. He’ll give others candy, gum, fruit or sliced veggies from home, whole cucumbers or squash from our garden that he has sometimes hidden in his shorts pockets…….you name it, Aaron has probably tried to give it away at one time or another. And while that’s nice, there are times we have to draw the line and say no.

There are times that helping Aaron to be kind doesn’t necessarily work into my schedule, but I have to remind myself that he needs help with carrying out some of the things he really wants to do. For instance, a couple weeks ago he wanted me to bring Jackson with us when I dropped Aaron off in the morning at Paradigm. I wasn’t really in the mood to do that, but finally I agreed and off we went, Jackson sitting on the seat in the back of the van looking all around and Aaron happily talking in the front seat.

Once at Paradigm, I attached Jackson’s leash to his collar and we went inside. The other clients love Jackson, so he was received with lots of petting and hugs. But the one person that Aaron wanted the most to see Jackson was his friend S., who is wheelchair bound and bent over with her disease.

“Mom!! Come over here and let S. see Jackson!” Aaron loudly told me from across the room.

So I took Jackson over to S., and I was so happy to realize that big old Jackson was just the perfect height for S. to just reach over and pet his head. She doesn’t move well, but Jackson was able to stand there and let her pet him easily. Aaron stood there rubbing his hands together the way he does when he’s very happy, his face just one big smile.

And the smile on her face was worth every single extra minute it took me to bring Jackson with us that morning. I left there later with a huge smile on my face that matched hers……and Aaron’s.

Aaron has also shown kindness to S. by giving her food. He has told me that sometimes he has to put it in her mouth, and that it seems weird to him to do that. But then we talk about her limitations and I remind him that he is being a true friend to her.

He is also sad when he sees her sitting alone. I’m not there to see how much time he spends with her, but he has said that he does talk to her sometimes when she’s alone. It makes Aaron sad to see her lonely, and it makes us very glad in that case to see Aaron sad.

One other thing we recently did was to make cookies for Aaron to take to his friends. It was a week ago on Sunday afternoon that we made the cookies after I suggested it to Aaron the day before. He was very happy about this idea. I had him help measure and pour and scoop so that the cookies were genuinely from his hand.

WP_20160717_12_42_51_Pro

WP_20160717_12_44_52_Pro_LI

He enjoyed taking them the next day and sharing them, giving the whole bag with the remaining cookies to one of the guys when I picked him up that day.

However, we got an incident report concerning the cookies, too. I think Aaron wasn’t so nice sometimes with sharing his cookies. This is so typical. I can’t let it stop us from doing this nice gesture that others enjoy, but it is discouraging sometimes to see Aaron take something good and make it an ugly issue. We’ll talk about it during our next baking session, and I’ll drop Aaron off that morning hoping and praying that he’ll be nice to everyone and share equally.

It’s all a lesson to me on how we can’t give up on Aaron. We have to keep reminding……and training……and instructing…….and teaching…..

And putting ourselves out there in order to help Aaron become the young man we want him to be, at least most of the time. We can’t expect it all of the time, but we can’t quit trying.

Parenting never quits for any of us with children, but with our Aaron the parenting REALLY never stops. Other special needs parents can certainly agree to that.

May as well make cookies, right? And be sure to eat some while they’re warm!

God, Are You Listening?

Gary and I are far beyond the baby years, and we have no grandchildren yet, but we still sleep with a baby monitor beside us every night. It sits on my nightstand as we listen for Aaron’s nocturnal seizures. It sure is a handy tool to have! Most of Aaron’s seizures are at night, in his sleep, so the monitor enables us to hear him and to go help him.

Aaron never remembers his seizures, which is a blessing. But he has seen others have seizures at his day group, so he has seen what they can be like. And he is well aware of how he feels afterward, with a terrible headache or nausea or waking up in a wet bed. Sometimes he loses his sense of taste for a day or two. It’s a reality of his life that he accepts remarkably well……probably much better than I do.

In the last couple years, though, Aaron has shown a degree of fear concerning his seizures. He’s not one to sit down with me or Gary and verbally express his fears. But every single night as we go through his bedtime routine, he asks me two questions.

First: “Mom, is it going to rain tonight?” He just must know if it’s going to rain.

Second: “Mom, are you turning the monitor on?”

Sometimes I beat him to it and after our goodnight hug I answer those two questions before he can ask them.

“Good night, Aaron. Sleep good. I’ll see you in the morning. Love you! And it’s not going to rain, and I will turn the monitor on.”

But if I’m going downstairs to fix the coffee pot or whatever, Aaron always says, “Do you want me to bring the monitor down to you?”

And on many nights, just for extra measure, we will hear Aaron walking up the hall and barging into our bedroom if the door isn’t locked.

“Mom, is the monitor on? Is it on right now?” he asks.

Sometimes when I’m extra tired I get impatient with this routine, and then I feel guilty about it. That’s because I know why Aaron is so concerned about that monitor. I asked him about it once, knowing that my questions can put thoughts into his head, but still wanting to hear what he had to say. So I asked him if he was scared of having a seizure, and he told me that he was. We didn’t talk deeply about it, but his answer was enough to pull at my heart and make me think as I often do about how I would feel if I was in his shoes. Seizures are definitely scary, and Aaron most definitely wants me or Gary there with him if he has one. Of course he does. I would feel the same way.

So every single night, and also for every single nap on days that he is home, I make sure he knows that the monitor is on and that I am listening.

The monitor did its job last night…..three times, actually. Aaron’s first seizure was a little after 11:30, and then two more followed during the early morning hours. He’s sleeping on the couch now – has been for a few hours since he woke up before 6:30 to discover his condition, change pajamas, and make his way downstairs. He took his morning meds and went right back to sleep, waking up awhile ago to ask for his cups of coffee, and then back to sleep again. Seizures take such a toll on his body. They take a toll on my heart.

But this morning…….as God always, always does…….my heart was comforted by reading from the book of Psalms.

“He who keeps you will not slumber. Behold, He who keeps Israel will neither slumber nor sleep.”

I can hear me now.

“God, do You have your monitor on? Are you listening in case I need you?”

WP_20160721_09_20_40_Pro_LI (2)

And God, Who is always patient with me, tells me once again that He doesn’t slumber or sleep. Did you know that “slumber” means “nodding off?” Like I do sometimes while Aaron and I are watching Wheel of Fortune…….and then Aaron yells, “MOM!!! You’re not watching!!!”

But I don’t have to do that with God…..and neither does Aaron. God won’t sleep deeply and He also won’t even nod off. He’s standing by Aaron’s bed with me during every seizure. Then He stands by my bed when I lay back down and try to go back to sleep, which is often hard to do. He knows my fears for Aaron and He understands my hurt for him, but He also reminds me that His plan is sovereign……His plan is best……even if His plan isn’t understandable to me.

It’s just really comforting to me to know that God never sleeps, even at night, and that He is beside me as I stand beside Aaron. And when I feel uncertain and ask Him once again if He’s really there……if He’s really listening…….He just gently reminds me that He is always there and He is always listening.

God’s just a very good Father to me and to Aaron, and to each of us who know Him. Even if our view of Him is through our tears and our fears, we know that God is right there with us through it all.

Simple Kindnesses

I was at Aldi the other day, having finished my grocery shopping and unloading my groceries from the cart to the back of my van. Now, if you know anything about Aldi you know that in order to get a shopping cart you must insert a quarter into the cart slot. Your quarter releases the cart chain and you then have your shopping cart. When you’re all done, you simply return your cart to the cart holding area, insert the chain, and out pops a quarter for you to take. You never see random shopping carts littering the parking lot, and you never see an employee pushing a load of carts back to the cart area. That’s because everyone returns their cart in order to retrieve their quarter.

So there I was, empty cart in hand, when I saw a woman walking in my direction. She was on her way to do her shopping, her quarter in her hand. I offered her my cart and she then offered me her quarter, but I did what many other shoppers do…….I told her to just keep her quarter and she was welcome to the cart. Now you would have thought I had offered to save her $25.00 rather than just $.25. She was so appreciative, and she said that she would pay it forward to someone else. I know that Aldi shoppers do this all the time, giving fellow shoppers their empty carts without taking their quarter. As I got in my van I was all smiles, just like the woman was who now had my cart and still held her quarter. I thought of what a simple deed that was and yet how very happy it made that woman, and also how very happy it made me.

untitled

Showing kindness can be such a simple act, yet can have such profound effects on the person to whom the kindness is given. Most simple acts of kindness take no pre-planning or preparation at all. They simply take an open heart and an eye for opportunities that come our way.

I’m always so thankful for those who show extra kindness to Aaron. It means so much to me as I’m out with Aaron to see those who show patience and respect for him, even if he’s standing there talking to them about aliens or a computer game or whatever else is in his head……while he might be rubbing his hands together in excitement……or scratching himself inappropriately…..or laughing loudly. Most people don’t know what to do in that situation but there are those who seem to just be gifted with a special understanding of our special son.

There’s the manager of our nearby Subway, whom I noticed has a knack for focusing on Aaron as if he’s all that matters to her at that moment. She is completely relaxed with Aaron, and when she told me that her mother worked with special needs and she grew up with those individuals in her home, then I understood. She asks Aaron what he wants to eat, not asking ME what Aaron wants. She was on her break one day, sitting in a booth trying to eat her supper, when Aaron spied her and remembered that she paid attention to him. He stood there talking about the latest movie he had seen, and she just looked up at him and listened as if he was discussing the very most interesting and important thing in the world. She answered him when he asked her questions. She made him feel that what he said was valuable. I wanted to kiss her!!! But I knew that might be taking it a bit too far! 🙂

There’s Shelly, the hygienist at our dentist’s office who cleans Aaron’s teeth. We have Aaron’s teeth cleaned every two months. Shelly should get a medal. She is very patient with Aaron and knows just how to handle his desire to talk or to stretch or to push the instruments out of his mouth. Look what she let Aaron hold at his last visit.

WP_20160606_11_26_45_Pro_LI

This kept Aaron’s hand occupied and gave him something to think about other than what was going on inside his mouth. Perfect!!

There was the girl at the theater snack counter this past Sunday. I thought Aaron was right behind me as I bought our tickets, but I turned and he wasn’t there. I went to one side of the snack area, but there was no Aaron. I finally found him on the other side, and by this time he was not in a line but was right up at the counter where a young woman was waiting to take his order. Aaron saw me and yelled, “MOM!!” as I hurried over to where he was. The first thing I did was to ask the young woman if Aaron had pushed ahead in line and she assured me that he had not. I knew instantly that she understood. A mom just knows. Relief washed over me as she asked Aaron what he wanted, looking him in the eye, and smiling at him with kindness and not with uncertainty. She just had a wonderful way about her with Aaron, treating him with calmness and with great ease. I wanted to quickly thank her specifically for her kindness to Aaron and maybe ask her about her background, but by then Aaron had moved on and was trying to stuff a huge wad of napkins in his pocket and locate a handful of toothpicks, so I had to run. I’m sure she got that, too.

This encapsulates exactly what I’m trying to say:

13615200_1034486286629554_5493197908589965238_n

I just love it when somebody treats Aaron like he’s a somebody……because he certainly is a somebody. He’s special in his own right, and not just a person with special needs.

It doesn’t take someone doing some huge thing for Aaron, like taking him on a two month vacation trip…….although if you want to do that, I might say yes. No, just like my Aldi cart and the quarter, the kindnesses that mean the most in my everyday life and in Aaron’s everyday life are the “small” kindnesses. These acts in their everyday hues are really enormous bursts of color to me and to Gary and to Aaron.

Each of us can do the same for everyone that we encounter. The littlest gesture can lighten a load in others that we don’t even see or know about. It’s never a small thing to be kind. We have no idea of the lasting impact a word, an action, or a smile can have on those random people that come across our paths every day.

There’s another aspect to kindness that we have with Aaron as well. It’s about our efforts to teach Aaron to be kind. On some days he acts as if he’s never heard the word, but on other days he amazes us and others. I’ll save that for the next blog.

Aaron does give me plenty of material to write about, after all!

Vacationing With Aaron

A vacation trip means different things to different people. Aaron was very happy when we told him that we were taking a Fourth of July trip to see family in North Carolina. He likes seeing Aunt Sandra and others that he knows. But really, to Aaron a vacation primarily means one thing…….food. Particularly, restaurant food. Snack food is right up there, too, on Aaron’s list of favorite vacation activities. Then there’s Aunt Sandra’s wonderful cooking at her house, which is the best! Staying in a hotel would be number three, because a hotel usually means dinner in a restaurant before bed. Rest stops are fun, too, especially if the rest stop is a stop at a filling station……where there is food. Plus I bring snack food, which is fun, but not as much fun as food that we buy on the road. So you get the idea. A vacation for Aaron boils down to one thing: food in one form or another.

We left for our Food Fest vacation on Thursday, the 30^th. Aaron wanted to know what time we were leaving, because knowing the precise time for everything in life is vital to Aaron. So we told him that we would leave around 8:00, hoping that the word “around” would yield us some leeway in Aaron’s mind. Not likely, but we can always hope that Aaron will be a bit flexible. As it turned out, Aaron had a very rough night before our 8:00 leaving time. I heard him having a seizure at 12:30 that morning, with two more strong seizures following during the early morning hours. It was a long and very tiring night for him and for me, but I was thankful that by morning Aaron was able to get ready for our trip. I was also thankful that flying had not been an option for us as it’s too expensive, because trying to maneuver Aaron in an airport and on a plane after seizures would have been very difficult.

We were two hours late to leave, but Aaron was too lethargic to care. He burrowed around in the back seat as soon as we started driving until he was finally comfortable, laying down and sleeping for quite a while. He would wake up and look around some, long enough to ask the inevitable:

“Are we getting something to eat?”

“Yes, Aaron,” we would answer. “We’ll be getting something to eat.”

“When?” he wanted to know.

“Oh, probably later in the afternoon,” we told him.

“So what time?” he asked.

“We’re not totally sure what time,” we answered.

“Oh,” was all he would say. Until:

“I’m talking about eating in a restaurant,” he clarified.

“Yes,” we said. “We’ll eat in a restaurant.”

“What time?” he ventured again.

And so back and forth this conversation occurred, over and over again as Gary drove us on our scenic route. If Aaron was awake, we pointed out the farmer’s fields…..the Mississippi River……the Tennessee River…….the quaint little towns with their interesting sights……the beautiful wildflowers……

But none of it was particularly interesting to Aaron. Part of it was that he didn’t feel up to par after his seizures. And part of it is because none of these things held nearly as much interest to Aaron as, say, a Cracker Barrel or Applebee’s sign. Of course!

Aaron was listening to some music on his headphones when he let us know that he needed to use the bathroom. We told him that we would stop as soon as we found a place.

“I’m talking about a bathroom in a restaurant,” he informed us.

HaHaHa!!! Good try, Aaron. We knew he must have been feeling better!

We ended that first day happily eating supper at Applebee’s, right beside our hotel in Paducah, Kentucky. Aaron rolled in his suitcase while he carried his small backpack that held his music CD’s and his CD player with headphones. And Aaron, who must finish what he has started if at all possible, was very pleased to put on his pajamas and then complete the task of finishing his Ronnie Milsap CD before it was time to turn off the lights and sleep. Mission accomplished!

WP_20160630_20_43_42_Pro_LI

We all slept very well that night. Aaron was still fairly slow that morning, which is normal after seizures. But he wasn’t so slow that he didn’t think about food! He was hoping for breakfast in a restaurant, so we told him that the hotel breakfast was very much like a restaurant. He didn’t really buy into that, but he was happy to eat again. And very curious about the bowl of Trix that the woman in front of us had as he leaned over to stare at it, which caused her to stare at Aaron……with a smile, thankfully.

Aaron really wanted Gary to listen to his Ronnie Milsap CD in the car player, but we told Aaron no, that he needed to use his own player. Gary told Aaron that he just doesn’t like to listen to music while he drives, which Aaron finds totally mystifying.

“How come you just like listening to the cars?!” Aaron asked in disbelief.

It was a welcome sight to see more and more mountains as we drove toward our beautiful Smoky Mountains, and to our family. Aaron wasn’t greatly impressed with the pretty views of mountains and lakes and rolling whitewater rivers. He just wanted to know what time we were getting to Aunt Sandra’s and what was for supper.

WP_20160701_16_31_32_Pro

Aaron quickly set up shop at Aunt Sandra’s, putting his CD and DVD player on the desk in the room where he sleeps. His Ronnie Milsap CD and his Superman movies were nearby, and he was all set.

On Saturday, Sandra took us up to see a friend who raises goats and dogs and cows. The goats were just so cute. Georgianna let Aaron pet and feed the goats, which he loved doing. He really loves to feed animals……of course! It’s food! We ate lunch at Nabor’s drive-in, which we always must do in Bryson City……and which IS a restaurant, so Aaron was happy! We drove around and looked at sights and gorgeous views, ending up at the grocery store……..where Aaron ended up finding DVD’s for sale, of course!!

WP_20160702_15_15_11_Pro_LI

It was just great to see everyone over the next few days! There were so many family members there, especially at the barbecue on Sunday. During the days that we were there, Aaron had lots of new people to talk to about movies or about his day group or about anything else that entered his mind. He didn’t know many names but he would usually just look at someone and say, “HEY!” I would often tell Aaron the name of the person to whom he spoke, but names didn’t matter nearly as much to Aaron as the telling of his stories did. So “HEY!!” it often was.

There were some moments of frustration, as there always are, but generally Aaron did very well. To be in such a crowded environment with many people he didn’t know, totally out of his routine, is always a stretch for Aaron. I think the time he got the most bothered, of all things, was the night that he heard Sandra and I making the noise that means something tastes good. You know…….mmm, mmm, mmm, mmm, mmm. The inflections in that common sound we make without even thinking just drove Aaron nuts. He told us to stop it! And we forgot as we stood at her kitchen island that night, sampling a few more little bites of her carrot cake. “Mmm, mmm, mmm, mmm, mmm,” we both intoned as we smacked our lips……and there stood Aaron. He had fire in his eyes as he got very upset, told us we were weird, and then gave me a kick in my leg. It’s just amazing to see how his brain functions, and to see what makes him totally lose control.

One of the sweetest moments came when Aaron began to tell his cousin, Andrew, about Ronnie Milsap. Andrew, bless his heart, got out his phone and tried to look up Ronnie Milsap while Aaron anxiously waited. Andrew’s phone didn’t get good coverage, so I quickly found the song. Andrew listened intently with Aaron, while Aaron rubbed his hands together in delight and laughed a lot in total pleasure. And to top it off, Andrew went up to Sandra’s house so that Aaron could show him some more Ronnie Milsap songs on his CD player. What a kind thing for Andrew to do!!

WP_20160703_16_30_44_Pro_LI

We visited Aaron’s Nana, Leo, on Monday morning before leaving town. We also got to see Jonni and JD, and of course, Meshach……who sat in Aaron’s lap the entire visit and even wanted to leave in the car with Aaron.

WP_20160704_11_06_46_Pro_LI

WP_20160704_11_28_30_Pro_LI

The trip back to Kansas on Monday and Tuesday was uneventful. Of course, Aaron had the usual food questions and where are we staying questions and when will we get to Kansas questions. On Tuesday he wanted to know what time we would get home. Gary told him that we would get home around 4:00 that afternoon. As we rode, we showed him when we entered Tennessee, when we entered Kentucky, etc.

“Is 4:00 when we come to the entrance of Kansas?” he later asked.

Later, we were on the final leg of our trip. It was 3:09.

“When will we be home?” Aaron asked.

“In about an hour,” I told him.

“No. You said 4:00,” he replied.

“What time is it?” Gary asked him.

“3:09,” Aaron answered.

“Then it’s about an hour,” Gary said.

“No,” Aaron answered. “It’s 51 minutes.”

I don’t think Aaron even notices the quick looks between Gary and me, and the suppressed smiles. He is so often unaware of how he affects us in a very pleasing, happy, amazing way. He does usually know when he affects us negatively, however, but I’m thankful that the happy times occur more often than the not-so-happy times.

He went to his day group today with no problem. That’s a huge big deal for him after being gone for so many days! He wanted me to come in with him and tell Barb about our trip, but I told him I didn’t have time for a long talk, and Barb probably didn’t either.

“But Mom, you don’t have to tell her for a LONG time!!” he insisted.

Yet I have told all of you for a LONG time about our vacation trip, that’s for sure. Thanks for bearing with me if you’ve read all of this. I just love sharing a little about what it’s like to travel with Aaron……to live with Aaron……to experience new things with Aaron……to be in his world and have him in ours in the way that we have this past week.

It’s just another glimpse into autism and into life with Aaron, which makes our lives full and rich and sometimes rather complicated.

But not boring. Never boring.

WP_20160701_16_43_30_Pro_LI

A Sometimes Wonderful World

Aaron was with me all day on Monday because he had a doctor appointment in the morning. Afterwards, we swung by the eye doctor to have his glasses adjusted; went to Taco Bell for lunch, which was the real reason that Aaron was happy to be with me; and then to Wal-Mart, his second real reason for being happy. I experienced quite a few autism moments, too many to remember them all……for after all, Aaron’s whole being is influenced by autism. So is mine.

There was the ride in the van across town, and Aaron’s excitement about listening to the CD he had chosen. Pop Memories of the 60’s was quickly inserted in the player, and then Aaron’s instruction as he held his hand up, palm facing outward: “Don’t talk. I want to listen to the music.”

WP_20160622_12_59_14_Pro_LI

The number 1 showed on the CD player, so Aaron reached down to quickly pick up the CD holder and announce in his monotone voice, “Stevie Wonder.” He bent over again to place the CD holder back where it had been. The song began and Aaron said, “Mom, do you like Stevie Wonder?”

Notice who’s doing all the talking.

So we listened to “My Cherie Amour” as memories of high school flooded by brain. But I didn’t share that with Aaron because I wasn’t supposed to talk.

Then number 2 came on the player, so Aaron bent back over to pick up the CD holder. “Kenny Rogers and The First Edition,” he again announced. And back down went the CD holder.

Number 3: Pick up holder…….“Tom Jones,” Aaron flatly said…….replace holder.

Number 4: Pick up holder…….. “Mama Cass,” was announced……replace holder.

You get the idea. All across town, and back across town, he never tired. Oh, and there was this one.

Number 10: Pick up holder……. “Lois Armstrong,” he said as sounds of “Hello, Dolly!” filled the van.

“Ummmm, Aaron, that would be Louis. Louis Armstrong.”

“Don’t talk, Mom! I want to listen to the music,” said guess who?

This doctor visit was to the psychiatrist who oversees his autism care. Oh, could I fill her ears full! I refrained somewhat, but Aaron didn’t. He stretched himself out on her small couch right away, uninvited to do so, legs hanging out over the end, and proceeded to talk about Mom’s upcoming trip to Houston……his upcoming trip to NC with Mom and Dad……his new Superman set of movies that we let him have for the NC trip……and Ultraman. Among other things.

Later, at the eye doctor, he was rather impatient as we waited. Doctors and glasses adjustments are such a bother, especially with Taco Bell just around the corner! Then in walked a nun, dressed in her full habit from head to toe. I hoped that if I began tickling Aaron’s back, he would keep looking down and not see her. Aaron is fascinated with nuns and with their unusual clothing, so I wasn’t sure what he would say. Too bad we didn’t have a CD playing so maybe, just maybe, he would be quiet. He did look up and he did see her, of course, standing right there at the front desk. But as she walked into the bathroom, out of earshot, all he said was, “Mom, she’s wearing a hood! She must work for the church.”

I was pretty relieved when she was called back immediately. I had no idea what to expect with both of them sitting in the waiting room together, and it wasn’t her I was worried about.

Aaron loved lunch, of course, even amid my reminders about not whistling as we waited for our food or making various other unusual noises. And then before we ever stood up to leave came my reminder to him about stretching. Aaron makes quite a production of stretching when we get up to leave a restaurant, his back arched and his stomach stuck out and his amazing stretching noise. So I’ve learned to remind him before we even stand up that he is not supposed to stretch, which I did there in Taco Bell. He stood up, though, and did a suppressed stretch……what you might call an abridged stretch……which on Aaron still looked amazing and drew attention, I’m sure. I’ve learned not to look at the people sitting nearby. He just looked a little like he was puffing up and about to implode, right there near the drink machine. Nice.

And then he saw it……the quarter that someone had dropped on the floor directly in front of the register. He has such hawk eyes for things on the ground, unless it’s his dirty clothes in his room or his mounds of books on the floor. I tried to stop him but it was too late. He bent over clumsily and picked up the quarter, while the line watched him and I just stood there. It was quite a sight, Aaron doing the old man bend. The employee told Aaron to keep the quarter, which he gleefully pocketed, oblivious to the scene he had just created.

Dear Aaron! He is so unaware of how funny and unusual he is, or of how he comes across. These autism moments, I call them, come in many various forms. And yesterday at his day group, they weren’t so funny. The not so funny autism moments cause anxiety and frustration for many other reasons. He wasn’t so happy to go to Paradigm yesterday, but he went. He ended up in tears for part of the morning, and then in the afternoon he was almost manic in his fake laughter and his “teasing.” He calls it teasing, even though we all remind him over and over that if he’s the only one laughing……and others are hurt or angry…….it’s not teasing.

Aaron thinks it’s funny to say things to people like, “You’re fat! You’re dumb! You’re old!” Or many other things as well, most of which are not funny at all. He truly can’t seem to permanently connect what is correct to say from what he impulsively wants…..and does…..sometimes say. This is especially true when he is frustrated about something. Instead of addressing the issue of his frustration, he will verbally harass others, and then often regret it later. And he does it under the guise of “teasing.”

He has a special friend who is all bent over in a wheelchair. He has shown so much kindness to her. I wrote once about how he waited on her at the end of the line as they walked to Quik Trip so that he could walk with her. He loves giving her things or helping her eat. But yesterday on the way home from Paradigm he said, “Mom, I told S that she’s ugly. I was just teasing!”

I was so hurt for S and I was so disappointed in Aaron. I told him that S is a young woman who would love to be able to get up from that wheelchair, go shopping for pretty clothes and make-up, and get her hair and nails done. I told him that she would love to go to bed at night thinking about how Aaron had told her that her hair was pretty, or that she had a pretty smile. Instead she would go to bed that night thinking of how Aaron had said she was ugly……and she probably feels ugly every day.

Aaron listened. He talked about it last night at supper with Gary. I have to say that it was hard for me to say the words I said to Aaron. Part of me wanted to just assure him that I was sure S knew he was teasing……that it was OK, but he should do better……or that we all understood what he really meant. But I knew that I needed to let Aaron know of the hurt he had inflicted, while it also hurt me to say the hard words to Aaron without backing down.

Aaron had a small seizure at 5:30 this morning, but it was enough for him to wake up later with a bad headache and with bleary eyes. I let him stay home today. Later in the morning, he went with me to run a few errands. On the drive back home, out of the blue, Aaron remembered.

“Mom?” he asked. “Can we stop at Dillon’s so that I can get S a sorry card?”

My heart was so touched, and so thankful. Aaron does know right from wrong. He does feel bad when he’s been hurtful, even though it’s after the fact.

So I told him that I had some cards at home. Right after we ate lunch, before he took a nap, I got out my card box and found him a card that he liked. It was blank inside, but not for long. Short and sweet, he simply wrote these words, with her name underneath.

WP_20160622_12_50_01_Pro_LI

I hope that he has learned a lesson, one that will stick and not be forgotten during his next crazy mood swing or unhappy moment.

The last song on the 60’s CD was another one by “Lois” Armstrong – “What a Wonderful World.” I want Aaron’s world to be wonderful, but I want him to also understand that he can quickly ruin the wonderful world of others by his words and actions.

Likewise, he can make it right with things like his “sorry card,” and with an attempt to watch his words and his teasing. Our job is to instruct, to understand, to be patient, to forgive…….and to be thankful for the wonderful world we share with Aaron, even on the rough days, always hoping that the rough days will be fewer and the wonderful days more frequent.

Now, don’t talk! Let’s listen to the music.

Sing it, Lois!

A Gift on Atha’s Birthday

Today is my friend Atha’s birthday. It should be a very happy day of celebrating for Atha, her family, and for me. Atha and I should be going out to lunch one day this week to celebrate our birthdays that are close together, paying for each other’s lunch while we laugh and while we share some heart-to-heart time. But none of this will be happening today, or this week, or ever again. At least not happening with Atha present. Atha is in heaven now, and has been for nearly three months.

Is that even possible?

I wrote about my dear friend Atha after her memorial service. Here’s the link in case you missed it and would like to know her better. This Is My Friend She was……she is……so worth knowing. I can’t believe she’s not here now.

I still hear her voice clearly in my head, and her wonderful laughter. I had lunch today with Atha’s daughter, Sarah, and I saw Atha in Sarah’s movements……the way Sarah held up her index finger as she talked……the way she opened her eyes so wide and moved her head…….her laughter.

I have so much I’d like to tell Atha. I deeply miss our conversations, whether in person or more often, on the phone. She was my best porch buddy, where I would sit as we chatted on the phone……my iced tea by my side……until the mosquitoes would drive me inside.

I still hear her words of advice, mixed with southern charm and sometimes a dash of sarcasm, depending on the subject. I hear her words of comfort during the hard times, and her words mixed with the fire of resolve over injustices or wrong that either of us were enduring.

And I will always hear, and never forget, one of the most impacting things she…..or anyone……ever said to me.

“You are established in your purpose, Patty,” she said to me one day. I wrote about that, too. My Purpose

I will carry that with me always.

I’ve been missing her more the past few days, probably because of her birthday. The special days are always hardest. This past Saturday evening, for some reason, I just wanted so much to go sit out on my porch and talk to Atha. I was so sad, and the tears came. So I went up to my table that holds my Bible and I sat down, opening the pages, and reading here and reading there as I asked the Lord to give me a word that I needed.

I ended up in Isaiah 46. God was speaking to Israel but principles are there for us as well. Listen to verses 9-10:

Remember the former things long past, For I am God, and there is no other. I am God and there is no one like Me, declaring the end from the beginning, and from ancient times things which have not been done, saying, ‘My purpose will be established, and I will accomplish all My good pleasure.’

I looked at that after reading it, and I said to myself, “Wait. What did that just say?”

So I read it again. Yes, there it was! Atha’s words to me were spoken by God to me as well!!

Atha said, “You are established in your purpose.”

God said, “My purpose will be established.”

Isn’t that just awesome and amazing?!!

God has a purpose, and His purpose WILL be established. He WILL accomplish all of His good pleasure. He will accomplish His plan, according to His purpose that He has established……and in which He IS established.

And I wanted to say, “Well, Atha……looky there!!”…….to borrow an old childhood word. Looky at that, would you?

Wasn’t God SO extra good and loving to show me those verses when I was so sad?

So I thanked God for reminding me of Who He is, and that He has a purpose even for the pain. I don’t understand it……I may not even at this point really like it…..but His purpose will be established. It will be accomplished, whether I see it or understand it this side of heaven or not.

Verses like this become memorial stones to me, so beside that verse I wrote, “Remembering Atha, June 2016.”

Atha would absolutely love this. I wonder if God told her how He leaned down and spoke to me on Saturday evening, using her words that are His words.

It was just all wrapped up together like a beautiful package, perfect for this birthday week.

Happy Birthday, Atha. I miss you, I love you, and I am so happy that you are…..and always will be…..my friend, Atha.

1914503_10153279256156895_827625779676576061_n

	Patty hesaidwhatks on Two Cookies
	Nancy Ruegg on Two Cookies
	Dawn on Two Cookies
	Patty hesaidwhatks on Two Cookies
	Patty hesaidwhatks on Two Cookies