Today is World Autism Day. It’s a day to bring attention around the world to the issue of autism – its causes, its impacts, its uniqueness – and so much more. I can’t speak for others, really, but I certainly can tell you how autism has rocked our world.
I was a young wife but not a mother yet when Gary was in flight school at Fort Rucker, Alabama. He was learning to fly helicopters for the army, and I was learning the bare beginnings of how to be a good military wife. I particularly remember a warm Alabama day when I was outside our house on Sharon Lane, planting Zinnias, and wishing with all my heart that there was a baby – our baby – lying in a little crib inside. I thought that life would be complete if we had a baby.
The army moved us to Fort Carson, Colorado, and in another house we did welcome our little Aaron Daniel. He was perfect and tiny and complete, as was my happy heart. A baby! A son!
I thought often of that stunning verse in Psalm 139:14: “I will praise You, for I am fearfully and wonderfully made. Marvelous are Your works, and I know this very well.”
Fourteen years later, I sat in a pediatric neurologist’s office in Tucson, Arizona. I watched him talk to and examine our son…our Aaron…not so little now, but big and complex and confounding to us. Gone were his sweet small innocent ways. He was instead often angry, agitated, loud, embarrassing, and the center of much unwanted attention.
Gary and I at first thought that our unusual and perturbing Aaron was this way because of the effects of seizures he had endured since the age of seven. Then we wondered if his behaviors were due to side effects from all his seizure drugs. Or puberty, perhaps, added to the mix?
But Dr. Gray turned to me and told me that Aaron had Asperger’s Syndrome. I was blank. I had never heard of this, and I had no idea what he was talking about. Only when he defined this syndrome as a form of autism did I have an idea…a small inkling…of what he meant.
But oh, little did any of us know what this REALLY meant. Not until you travel on this unknown path of autism, with its myriad displays affecting every area of life…ours and Aaron’s…can you understand autism’s daily, minute by minute, impact. Impact on Aaron…on Gary and me…and on Andrea and Andrew.
So, what was I to do now with that powerful, affirming verse from Psalms? You know, the one that so eloquently said that God makes each baby…fearfully and wonderfully designs each one. Really?
I choose. I choose to trust God, totally…or not.
And then, even in my trust, I look up the words I don’t understand. Really.
FEARFULLY: means to reverence – so I know that I am to look on God’s design of Aaron and deeply respect what God has created. I am to be in awe of what God has formed. Of WHO God formed in my womb. And trust me, some days I’m totally in awe of who and what I see in this son of ours…and not always in a good way! And even as Gary and I shake our heads, we do know deep in our hearts that Aaron is exactly who God formed him to be.
WONDERFULLY: (This meaning is the BEST!!) This word means to “put a difference; to distinguish; to show marvelous.”
Aaron NAILS this one, people! Oh my goodness, he is so different than the average bear…and he cares not one bit that he is! He distinguishes himself everywhere we go and in everything we do…and he doesn’t mind one bit that he does! AND…he does show himself…sometimes marvelous and sometimes not, at least in our way of defining “marvelous.”
I decided to use some words to illustrate a little of who Aaron is, showing some recent pictures to boot.
Aaron is BLUNT: NO picture to show here! But earlier today I told him he could go to Dillon’s with me, so from that point he was impatient to leave. He walked in the bathroom, where I was fixing my hair. Wanting to leave NOW, he stared at me for a few seconds and then said, “You could just go to Dillon’s on a bad hair day!” 😊
Aaron is PERSISTENT: Aaron talks and talks and talks and talks. The other evening, he followed Gary to the bathroom, standing outside the door as he continued to talk and talk and talk.
Aaron is PRECISE: Look at his notebook in which he logs his times that he goes to bed and the times he wakes up each day.
Aaron is LOVING: He loves to share. If you have junk to get rid of, just let Aaron loose with it, and he’ll give it to anyone that he sees. He’ll also give away things that you prefer to keep. Anyway, he has a big heart. And he especially loves animals!
Aaron is TOUGH: He recently had 8 staples put in his head after a drop seizure on our stairs. Tough hardly describes all he has gone through over the years, physically and in other areas as well. But he was thrilled to get to keep those staples when they were removed…a trophy!!
Aaron is THOROUGH: Here he is yesterday, watching the movie credits with great intensity and delight. After all, movie credits are part of the movie and are to be watched! Totally. To the very, very end.
Aaron is RIGID: We want him to wear a helmet for a couple days when we think his seizure pattern may indicate that he’ll have a dangerous drop seizure. He does NOT want or intend to wear this helmet. His Aunt Sandra struck a bargain with him, saying that she would make and send him a toboggan hat to wear if he would wear his new helmet. So, he wore the helmet for an agonizing maybe three minutes. He DETESTS how it feels!! Tactile issues have never been ones he can overcome, from the time he was a little boy. Here the helmet lays, where it was ungraciously tossed by a very frustrated Aaron.
Aaron is FUNNY: He does make us laugh, some days more than others. He delights in the things that most of us ignore or take for granted…the cows in the field, the horses, things laying on the ground that he finds, funny commercials, store decorations, and on and on.
And I could go on and on about our Aaron. He truly is “fearfully and wonderfully made.”
In many moments, Gary and I don’t grasp that truth. Have no doubt, there are deep tired sighs that you will hear often in our home. We get frustrated, lose our cool, feel guilty, and then repeat the process again.
But also have no doubt that we know…we KNOW…that Aaron has been used by God to make a huge difference in our lives. He has distinguished himself as God has taught us more about Him and about us than we would most likely have learned otherwise. And Aaron has shown us just how marvelous God is in our weakness and in our pain and through our tears.
And God reminds us of how marvelous Aaron is, created with a purpose.
Yes, fearfully and wonderfully made!!
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.”
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.
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.
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. ♥
This past Saturday, I took advantage of the beautiful weather and spent some time in the garden. I ended up with a large bucket full of tomatoes. Our tomato plants have produced beautifully this year! It’s certainly the best tomato year we’ve ever had. I’ve canned quite a few quarts, and as I looked at my overflowing bucket I knew that there would be more canning soon to come.
Aaron was in a very happy mood over the weekend. One of his favorite staff from his day group came over for pizza on Friday evening. When he left, Aaron got to spend some time petting our neighbor’s cat, Dallas.
There was a favorite television show to watch that night, too. And the next day there was time outside, time playing Skip-Bo, and tacos for supper that night. It doesn’t get much better than that! Simple joys are sometimes the best joys.
Aaron was in such a helpful mood on Saturday, too. He helped me cook the tacos and set the table. And then he offered to help me wash the tomatoes from the garden after supper. We got them all cleaned up, with Aaron stacking them higher and higher on the counter. We laughed when four of them fell on floor and we had to reposition the tomato tower.
On Sunday afternoon, Gary and I had hoped to take Aaron to a corn maze. However, Aaron started complaining of a sore throat. We could also tell that he was getting a cold. We’ve learned not to tell him in advance that we might go somewhere, just in case it doesn’t work out, so he was none the wiser when Gary and I cancelled the corn maze idea.
On Sunday night…..actually, early in dark morning hours on Monday……Aaron had a seizure at 1:20. Then another and another, until finally he ended up having five very hard seizures in five hours. He was already struggling with all the head congestion, so the seizures were a little scarier than usual. He bit his tongue and wet his bed – all the bad stuff that points to hard seizures.
He slept all day yesterday, Monday, on the couch while I washed all of his bedding. When he did awaken, he sounded terrible because of his congestion and his swollen throat. He was running a fever. He was terribly weak, the seizures having taken quite a toll and then his illness making matters worse.
He very slowly made it up the stairs in the late afternoon, on all fours like a monkey because when he’s weak he feels safer that way. He climbed in bed and immediately fell back to sleep. He got out of bed for an hour, later in the evening, and then slept all night last night.
I took him to the doctor this morning. Aaron had pneumonia last year and was in the hospital for a week. That was my fear now, but thankfully he doesn’t have pneumonia. In fact, we’re treating this as a virus and waiting to see what happens. Too many antibiotics last year was really hard on his body for months afterward, so we want to avoid those drugs if at all possible.
Aaron ate a little lunch when we got home. Now he is sleeping, again. Poor guy.
And I’ve been thinking how quickly things can change. Sickness with Aaron is more serious than it usually is with most of us. Sickness on top of five hard seizures has just done a number on him. He is very slow and wobbly, and extremely tired.
It’s amazing how we could go from this:
Hopefully, what Aaron has right now is nothing terribly serious. But the stark change that he has gone through, literally overnight, is a reminder to me that we just never know what a day……what an hour……might hold for us.
In James 1:2, James told us to consider it joy when we encounter various trials. That word “consider” means to make a judgment. It’s up to me to decide how I’m going to view my hard times. It’s my call. And various trials really mean “multi-colored trials.” I think we all would agree that trials come in all different colors. God uses a wide variety of situations in my life to grow me and to teach me.
But again, it’s what I do with my trials that can make all the difference. It’s like Aaron’s pile of tomatoes, stacked up on the kitchen counter. I could have left them there, where eventually they would rot and be no good for us or anyone.
Or I could do what I did Monday while Aaron slept nearby on the couch. I could use the tomatoes for something good……for something that will benefit us during the cold winter that’s coming.
It was my decision what I did with those tomatoes.
And it’s my decision what I do with the trials in my life, so often unexpected and unwelcome. God is waiting to grow me through the troubles I have. I don’t have to understand them, but I do have to make the choice to let God use them in my life for something good…..and in the lives of others as well, I hope.
Not to become bitter, but better. And then in future cold days that may come, I will benefit from the lessons learned…..learned in the hard times.
I pulled up in front of Aaron’s day group today, waiting for him to come outside and wondering as I always do in what mood I would find him. He wasn’t very happy to go this morning. Mondays are often difficult for Aaron, like they are for many who must return to work or school. Problem is, Aaron isn’t always able to filter his frustrations, so he may be angry and rude as he expresses his Monday morning blues. But he did go this morning, carrying his bag as he got out of the van…….his bag holding two bottles of water from the house, two sausage biscuits and two boxes of Hot Tamales from Quik Trip, and two cucumbers from our garden. The water and the food was for Aaron. The cucumbers were for whomever he decided to give them to today.
Aaron’s language of love toward others is definitely sharing. I have to watch him or he might try to sneak things out of the house that I don’t want him to share. Or he might bring a smile, as he did a couple weeks ago, when he put a few okra from our garden into his pocket…..and gave several of the staff at his day group AN okra. One okra. I’ve wondered if they think me a bit stingy.
Anyway, I sat in front of Paradigm today trying to prepare myself for whatever form of Aaron would soon be climbing in the van beside me. Happy Aaron? Sad Aaron? Tired Aaron? Angry Aaron? It’s so much like still having a kindergartner in school, going to pick them up and waiting for their stories of the day, and seeing what frame of mind they are in. Except that all the clients at Paradigm are adults, not young children. My Aaron is nearly 32 years old and weighs 225 pounds! He is grown up, but sometimes still his issues are not.
He walked out today with Barb, his very loving staff, holding Piper the resident therapy dog. Along with Aaron and Barb walked one of Aaron’s friends who often comes to the van with Aaron to see if I have brought our big Jackson. I could tell that Aaron looked like he had been crying at some point, and I was right. As the van door opened, Aaron’s mouth also opened as he told me that he had gotten mad at J for telling him to be quiet so that another client could sleep…..and Aaron thought that J was being bossy…..and Aaron didn’t like a hand motion that he said J made (nothing bad – Aaron just really doesn’t like other’s hand motions)…..and so Aaron hit J in the back…..really hard.
Oh dear. Children’s issues but in adult bodies. Barb was kind and supportive as Aaron declared that he did not want to come to Paradigm tomorrow, telling him that she hoped he would come, but not pushing the issue. I said a little but not much, knowing it’s best to let the dust settle first. More soft words from Barb and then she mentioned that he gave his two cucumbers away…..and his little friend standing behind Barb brightened, opened her purse, and pulled out one of the large cucumbers. Aaron brightened, too, and my heart softened for this man/boy who has so many conflicted emotions in any given day, today included. The moment suddenly turned sweet and funny, his little friend happily holding up her cucumber with a big smile on her face. These special adults can touch me so deeply if I just pause to soak it all in.
Reality hit again as Aaron and I drove away. He told me once more that he didn’t want to go back tomorrow. I was seeing a long evening ahead of anger and sadness, with Gary getting hit with it as soon as he unknowingly walked in the door. So I calmly talked to Aaron for probably the zillionth time about not hitting people, about how that holds him down in life, and how someday he might get hurt.
He turned on the CD of Zac Brown. “Don’t talk, Mom,” he instructed. “Let’s just listen.”
This suited me fine. We hit the three lane and rode in silence in rush hour traffic. Finally, he reached over and turned off Zac Brown.
“Mom?” he asked. “Can we go to Dillon’s and let me get a sorry card?”
What?! Aaron’s mood had dramatically changed. As he has in the past, he wanted to once again get a “sorry card” for someone he had hurt. But this change had happened quickly. He was sincere and quiet as we talked about it. I told him that we had cards at home he could use, and he was satisfied with that.
“And can I bring Barb an okra?” he continued. I suggested a green pepper instead, and he was excited at that idea.
“Mom?” he asked again. “I’d like to bring S a stuffed animal. That’s why I wanted to bring her my spider.” But I reminded him that his cute stuffed spider was a special gift from Bruce and Glenda, from Hawaii, and he shouldn’t give that away. I told him we would look for something else to give S…..his very special friend who is wheelchair bound, all bent over, and the girl with whom Aaron loves to share his food and his conversation.
I can’t explain the positive change in Aaron’s mood, but I sure have been praying lately about his hitting and his anger at times. Praying, too, as Gary and I get so tired some days. So I may not be able to explain Aaron’s happiness tonight, but I can say thank-you to God for allowing it.
I ended up finding an ancient little “sorry card” that I had saved in my ancient container of cards……two “sorry cards,” in fact……so Aaron chose the one he wanted to give J. Later, he saw the Burger King coupons from yesterday’s paper that he had cut out. He asked if he could give one to J, so we chose one to cut out and include with the “sorry card.”
Then I showed him one of the green peppers from our garden that he could give to Barb, and it met his approval.
Finding something for S was a little more difficult, but I remembered a very soft pillow stuffed with tiny microbeads, a pillow that Aaron never uses. He set it aside in his room, ready to take to S tomorrow.
I was happy that I had started supper early because Aaron wanted me to play the Frog in the Pond game on the Atari system that Gary hooked up to Aaron’s computer. We laughed and laughed and laughed at me trying to get the frog to catch the bugs.
Aaron offered to set the table for supper. He fed Jackson a piece of asparagus stalk. He didn’t dump bad news on Gary when he came home from work. He told Gary all about our Atari game and all about his sharing plans for tomorrow, but barely was mention made of his rough spot today and why he needed to give J a “sorry card.” We watched Wheel of Fortune, and we laughed ourselves silly at the Nexium commercial with the man who was made into a burrito.
I pray that tomorrow morning, when Aaron wakes up and is tired, that he doesn’t change his mind about all that he has planned for tomorrow. I pray that he is excited about all the things he plans to take to give away, especially the “sorry card.” That’s the most important of all.
I’m grateful for this happy evening, and I know that it is one to which I can direct Aaron as an example of how to handle life’s rough patches. I can honestly tell Aaron that he was a wonderful example to ME of how to overcome anger and frustration.
Sharing touches a loving chord in Aaron’s soul. It always has. I need to work with that more, and get creative.
I can see a trip to Dollar Tree in our future. We need to restock Aaron’s “give away” items, or I may be missing some dishes…..towels…..jewelry……
It’s been awhile since I’ve really written about Aaron. So many days I want to write, but somehow life prevents me from doing what I would love to do. I mean, do we really need clean clothes, food on the table, errands run, garden tended, a somewhat tidy and clean house, etc., etc., etc.?! Then so much time goes by that I lose my momentum……lose the feel of those special Aaron moments…..and so I go on, hoping to recapture them and share them later.
Aaron and I are coming off of a fun, long Labor Day weekend. It was sad for me because Gary’s Uncle Bob went to heaven on Friday morning. This was awesome for Uncle Bob, but of course has left a huge hole of grief in the hearts of those that he loved and who returned that love so deeply. He was a great man. As Gary checked the price of plane tickets Friday evening, the realization quickly sank in that we could not both go home for Bob’s funeral. I was very thankful that Gary did go. At first he said no to that idea, but he really needed to be there with his family. He’s so glad he did.
Aaron was my shadow for a large part of our long weekend. We went out to eat……watched movies here at home…….took walks around our back yard with Jackson……washed and ate garden veggies…….enjoyed sitting on the patio and seeing our Hummingbirds at the feeders……watched Wheel of Fortune……and did a little shopping.
And I captured one of the best pictures of Aaron ever as we ate at Jose’ Peppers. Isn’t this just great?
On our Wal-Mart trip, Aaron went on his way to the electronics while I browsed some on my own…..knowing that I would probably find Aaron later, when I went to pick him up, with some discovered jewel of a movie in his hand. Sure enough, that happened…..but I was able to dissuade him from the need to buy it now since his birthday and Christmas are looming on the horizon.
In his other hand, though, he carried a CD. Any of you who know Aaron know that he loves music. He loves listening to music any time that the van door closes and the engine starts. He becomes super focused……another word for obsessed……with whatever current artist is filling his ears with music. He will announce every song as the number on the CD changes, then sit back and listen closely. Then at home he will look their songs up on his computer and love every minute of watching them perform.
When it was Neil Diamond, for instance, Aaron one evening said to Gary, “Dad! Mom and I are listening to Neil Diamond! Mom likes number 11!!” Then he paused, because surely Dad knew what song is #11. When he realized that Dad was not at all adept with knowing #11, Aaron patiently said, “It’s Song Sang Blue.” Never mind that it’s really Song SUNG Blue. Aaron isn’t concerned with grammar.
Aaron continued telling Gary about Neil Diamond. “He always carries a gu-tar.” “Why does he like a gu-tar?” “Is that his favorite instrument?” “He has funny hair.”
And later, as he and I played Skip-Bo, Aaron suddenly asked, “Why do you like number 11? Is the sound of that song kind of cute to you?” So Song Sang Blue was thoroughly discussed, dissected, analyzed, and hopefully understood after we were done.
Back to Wal-Mart and the CD in his hand. Aaron loves, loves, loves Ronnie Milsap. He was totally thrilled as he held out his newly found CD for me to see. “MOM!! I found Ronnie Milsap!!!!”
Yes, it was Ronnie Milsap all right……Ronnie Milsap Gospel.
“Aaron, I’m not sure you’ll like this so much,” I told him. “It’s gospel music.”
“Please, Mom?!! Can I get it??” he begged.
So I said yes, and we immediately put it in to play as soon as the van door closed and the engine started. As the sounds of How Great Thou Art filled the van, Aaron bent over and rubbed his hands together every bit as much as if the Beach Boys were singing about girls on the beach, as Aaron says.
Aaron repeats a phrase of the last song, usually, that we listen to as we drive home. We hear it over and over and over and over for the rest of that day. So on Monday, many times, I heard Aaron singing these four words – “How great Thou art.” “How great Thou art.” “How great Thou art.”
And on Tuesday, back at his day group, Barb texted to tell me something and then she said, “Aaron was singing How Great Thou Art earlier.” HaHaHa! Isn’t that just the best? Maybe that’s why he was having such a great day. And he also took some of our garden tomatoes to share, giving some to his friend Yolanda, a fellow client. Look at this picture of happiness.
Last night Aaron wasn’t feeling well at all. He said his head and stomach hurt, and at 8:30 he wanted to go to bed. “Maybe I suddenly caught a germ,” he quietly said as he and I went through his bedtime routine. But he was off, not even asking if it was going to rain or checking on the outdoor temperature, which he ALWAYS does! He did ask if I would have the monitor on. I know why. I know he’s afraid of having seizures, and that just breaks my heart for him.
Friends and family prayed, and there were no seizures during the night! I was so, so thankful for that! Aaron got up this morning after sleeping for nearly 12 hours, saying his head still hurt. Yet he always says this in the morning, so I wasn’t too sure. He sat across from me at the kitchen table, giving me a stare down as he hoped I would tell him to stay home. As the morning went on, he improved. Coffee and a shower works miracles! And so did the offer of a Quik Trip stop on the way to Paradigm!
Later, sausage biscuits and Mike & Ikes in hand, we headed down Kellogg on the way to his day group. The artist of choice now filling the van was Alan Jackson. Aaron picked up the CD case and said, “Mom! Look at #5 and #11. They’re BOTH about LOVE!!!”
So as #11 played, I made a kiss sound in rhythm to the music……and received a resounding whack on my arm from Aaron!!
“What’s up with that?” I asked. “I thought you liked the songs about love.”
“Well, love is too weird,” he explained. “When people are in love, they have to kiss!!”
I just smiled. I can’t change Aaron’s mind about love being weird, but what he doesn’t know is how much he is loved. He knows it, but he doesn’t know it. Does that make sense?
Good days……bad days……laughter……frustrations……joy……worry……fun……anger. We have it all with Aaron, magnified on most days.
But when we’re feeling like singing “Song Sang Blue” on one day, there are many days that we’re singing a love song about Aaron. But don’t tell Aaron. He’ll think it’s weird……and then give us another sharp slap……
And it’s back to “Song Sang Blue!!!”
I love this picture I found on FB this morning.
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 753rd 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:
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.
Playing Skip-Bo, knowing that Mom is looking out with eagle eyes for his cheating attempts.
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.
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!
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.
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.
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.
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!
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.
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.
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?
But he plays with the intent to win, realizing that Mom still can watch for cheating even with a splint on her hand!
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.
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!
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.
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!
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?”
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.