I'm Patty, and my husband and I are living with our adult son who has autism and epilepsy. I love sharing lessons learned from life around me, especially life with Aaron.
Aaron was walking through the family room the other night. We had a football game on the television, but at this time there was yet another annoying local car commercial playing. Aaron doesn’t like yelling………which is quite a mystery, since he doesn’t seem to mind his own yelling.
Aaron paused, turned toward the TV, and after a few seconds he said (with disgust), “That car salesman is a yell mouth!!”
And once again, Aaron has nailed it.
I took Aaron to the lab this morning for his routine blood work that he needed to have done before his Epilepsy check-up in a couple weeks. Aaron knows the routine well………..and so do I. As I check him in at the front desk, I am amazed as always that the receptionist doesn’t know how to pronounce any of his meds. Seriously……….can she not even sound it out? Oh well – I have other things on my mind as I gently oversee Aaron and his curiosity as we stand there waiting for her to figure out her pronunciations. He loves the green Indian mask kleenex holder…….the one where the kleenex is coming out of the mask’s nose. This is right up Aaron’s alley, believe me! But he also has to pick up the little rubber bear and the hand sanitizer and a pen that is laying there………as I watch to be sure he doesn’t slip the coveted pen into his pocket. I know his tricks!
The waiting room was empty, which is always a blessing………..so we were able to head straight back and let Aaron sit in the chair. He stuck his arm out………the arm with his watch pushed halfway up to his elbow. And I wonder what the tech thought of that watch………..and what she thought of the funny mouth noises Aaron makes………..and I realized that we are also blessed by the fact that Aaron has never been bothered by needles and tests. He watches her carefully as she prepares the vials and then steps away to do something…….and I watch Aaron carefully as his eyes roam over the very interesting table right beside him, full of all the vials and the tourniquets and so many other interesting things……things that he will pick up to examine if I don’t keep an eagle eye on his every move. She returns, and he watches every part of the process of having his blood drawn. He rarely even flinches when the needle enters his vein, and he keeps a curious eye on each move that she makes as his blood is removed.
Soon we were on our way, and on this particular morning I told Aaron that we would go up the road to Wal-Mart. Happy, happy Aaron! He talked the whole way about this and that, as he always does, but was especially excited to tell me about a car he had seen the day before. “Mom! I saw a car yesterday with TWO policemen beside it. It didn’t look like there was a wreck, but the car’s LID was popped up!” So we talked about why car lids sometimes pop up and why the police were there…………as we walked into Wal-Mart and Aaron waved at the outdoor cameras as he always does. Good morning, security guards! Smile!
This was a trip for junk food, I will admit. This made Aaron even happier, of course. I told him to choose a drink and of course he said, “Can I have beer?” He says this a lot, and he always laughs, and if I don’t laugh then he will repeat it until I do…….so I laugh and he chooses his flavored tea and off we go to the chip and candy aisle. He carefully mulled over the selections, knowing that Mom has limits, and after choosing some Twizzlers he suddenly turned and said, “Mom, can I buy Dad something? I love him!” I wonder if the shock showed on my face. Aaron rarely, rarely, offers up such sentiment………and without being prodded or reminded………..this was totally spontaneous from him. This was a proud moment for me and I was hoping that the other shoppers nearby heard my son as he wanted to buy his Dad something…………his dad whom he LOVED!! I have lots of moments with Aaron when we are out in public………..embarrassing moments and frustrating moments and tense moments………but not very many truly proud moments. Of course, I was hoping that these same shoppers didn’t hear Aaron asking if he could have beer or hear him talking about how he likes to make funny comments about the women’s bras. Let me have my ONE proud moment, OK?!
We went over to the beef jerky aisle as I looked for something that Gary would like in the line of meat or trail mix…….not candy for Gary. Aaron looked over the selection quickly as he was in a hurry to go to the DVD aisle and being loving to Dad was taking a little more time than he wanted. “Mom, does Dad like beef and jerky?” And Aaron was off in a trot to look at DVDs as I chose something…………straight from Aaron’s heart……..but this is something else that we understand about our Aaron.
We looked at DVDs and Aaron had to rush over to ask the sales clerk for help even as I told him not to bother her. This happens every time that we are in any store. I wonder if the sales clerks all know Aaron and dread his arrival. Oh well………I thanked her and once again told Aaron he didn’t need to bother her. We chose a cheap DVD……….Chuck Norris – hopefully full of excitement but good values. Soon we had paid and were heading out the door, where Aaron just HAD to stop at the ice machine. There was a repairman on a ladder, with his head stuck in the open door of the machine and Aaron asked him if the machine was broken. I wanted to be sarcastic and tell Aaron no, that this man was just trying to cool his head…….but Aaron doesn’t get sarcasm so I just smiled and hoped that nice man didn’t mind answering a silly question.
Soon we were home again, home again. Aaron made sure he grabbed the bag with his DVD first and then helped carry in a couple more. He ran downstairs to show Gary his new movie, and then ran back down to take him his turkey sausage rolls. Then it was up to his room, where he turned on his fans and put on his headphones and began whatever it was he wanted to do on his computer.
I will probably hide the Nutty Bars, knowing that if I don’t then they may all disappear by day’s end. I will have to delegate the Twizzlers, if I can stay ahead of Aaron on that. And I will think of the blessings of life with Aaron on this day…………not that he had to go to the lab, which is a stark reminder of his Epilepsy and of seizures…………but that he actually enjoys the lab and that he loves a simple trip to Wal-Mart and that he’s not embarrassed to be seen with his mom. And that I actually had a moment where I was not embarrassed by something Aaron said but was PROUD!!!
Little does Aaron know how many times I say to myself, “Can I do something for Aaron? I love him!”
My garden shoes crunched over the brittle mulch as I bent over to cut away the deadness. And as I clipped the useless remnants of my flowers, I noticed that even in the seemingly lifeless garden, some creatures and plants continued to live. Here and there were weeds……..a chickweed growing against the brick border……….a clump of crab grass nestled in the dry mulch. How do weeds manage to live even in the midst of such drought? Around me I saw grasshoppers lunging up as I disturbed their hiding places. As if my struggling flowers needed any other detriments to their growth, I thought. Those ugly grasshoppers would eat any remaining life out of these poor flowers for sure. The life that I was seeing in my flower garden was not the kind that I wanted to see at all!
Yet as my shears stripped away the dull remains of my flowers, I saw some color. There, nestled amidst the blackness, was the welcome sight of a yellow Black-Eyed Susan; a bright pink little Coneflower; a softer pink Garden Phlox. They were both a reminder of what had once been and the hope of what could very possibly come again next spring. Dryness and death doesn’t have to be the norm, I thought. There is always hope that the rains will come again; that the sun will be kinder; that replanting or reseeding can occur. In the meantime, here and there a flower still grew, and the purpose of these seemingly dead plants was evident in the midst of awful circumstances. 
How did David seek God? “Because Your loving kindness (grace) is better than life, My lips will praise You. So I will bless You as long as I live; I will lift up my hands in Your Name.” (Psalm 63:3-4) David took action! He didn’t sit there and allow ugly weeds or grasshoppers to clutter his soul. He used his lips to praise God and he lifted his hands in worship of God. He opened the way for God’s beauty to fill his being even in the midst of a dry desert and a dark cave. Just as my little blooming flowers shone in my ugly flower bed, so David’s praise and worship was a shining light in his own heart and to those around him…………a light to reveal the great God Who loves us and delights in our praise even in the dry seasons of our lives…………..ESPECIALLY in those dry seasons!What a difference a day makes! Aaron has been very happy today. He and I have both laughed at some of his antics, and I’ve laughed at some of the things he has said. I don’t know if it’s good night’s sleep he had; the seizure he had at 2:30 this morning that rearranged some of those neurons; looking forward to his trip to the mall today and the food fest that usually occurs; or a change in the weather that’s on the way…………but he’s been happy and lots of fun this morning.
It began when I went into his room to get him out of bed………..and his bed was empty. He hasn’t played this trick in awhile, but I know what an empty bed and closed door usually means. It means that Aaron is hiding from me, just like a kid would do. It didn’t take me long to figure out that he was hiding in his closet because the door was slightly ajar………..and Aaron never allows the door to be partly open, even a crack. So I opened the door and there he was, laying on the floor like someone in a crime scene. He was very droll about this unusual sight of a grown man crammed into a little closet, laying on the floor, but he was also very pleased with himself for his brilliant hiding place.
He successfully drank his coffee outside as he sat in the mulch doing his “mulch thing.” No spills today on his white shirt. Yay! Then on the way to meet his group, he said, “Mom, it was funny that I fell yesterday when I spilled my coffee.”
No, Aaron, it wasn’t funny. It was scary that you fell.
And he said, “Well, it was half funny then!”
There he goes with that half business again, which makes him totally funny to me………..and I laughed and he wondered what I thought was so funny as I patted his leg………….and told him that HE’S the funny one. No response, as usual, to that comment.
Talk then went to policemen and I have no idea why. “Mom, there are different kinds of policemen, right?”
Right, Aaron. “Well, which one is it that’s the country cop?”
The country cop? So as I dropped Aaron off I’m still not sure if the country cop is the state policeman or the sheriff……………because Aaron hasn’t quite figured this out yet.
And as usual, I’m trying to figure Aaron out as well as country cops. I have the whole day ahead to do this! And that’s a good thing.
Here we go again. I heard it from upstairs…….the sound of the plastic containers full of coffee hitting the floor and then the thump. My heart sank as I hurried downstairs to check on Aaron. He was fine, although sprawled on the floor with spilled coffee all around him. He jerked and dropped his coffee yet again………lukewarm coffee, thankfully. And thankfully he didn’t throw his coffee containers as he has been known to do when he’s in a rage. This was a true accident, but messy and discouraging none the less.
I was frustrated with Aaron this morning over a couple things already and this didn’t help, believe me. My compassion for him still hasn’t quite kicked in yet. He has cleaned up and showered, and seems to be fine. I hope he’s not bruised.
I just stood and looked at this mess………coffee all over the floor, the cabinets, on and under the frig. UGH! And I thought of how many times I’ve just felt like throwing in the towel. We all do, don’t we, whether we are parents or not. But we can’t quit. God doesn’t and we can’t. Especially as parents……….these children are given to us by God and He wants us to hang in there despite how tough it sometimes is.
So instead of throwing IN the towel, we throw ON a towel. We clean the messes up step by step, bit by bit. We’ll see progress one day, even if it’s slow to come…………even when we just stand there and don’t know where to start. God gives patience; and God gives us the same grace toward our children or others that He has extended to us. We clean up the messes, whatever they may be, and we push forward.
The rest of the day is before us. It’s up to me now not to mess up my reactions and my attitudes. I’ll need to grab another towel if I’m not careful!
A very unpleasant and unattractive trait of Asperger’s Syndrome is the tendency to be very egocentric. Dear old Aaron shows this side of himself every single day…………some days and some situations more than others. His inability to manage his emotions and his self-focus can be extremely frustrating at times.
Mom! I’m hungry!
Mom! I’m tired!
Mom! I’m bored!
Mom! I’m sleepy!
Mom! I’m curious!
Mom! I’m awake!
Mom! I’m cold!
Mom! I’m hot!
It can be wearying sometimes for Gary and I. We often try to bring Aaron’s attention to the needs of others and to how someone other than himself is feeling. Aaron is rarely affected by this attempt………..but when he does show concern for others, and especially for Gary or me, it certainly does touch our hearts. I’ve written about that when I talked about the hug he gave me one night when I was sick or the bandaid he brought me when I hurt myself. Those moments are all the more precious to us because we know that they come from a place deep inside Aaron that we rarely see.
Last night we did not see a very caring attitude. I had come upstairs to get ready for bed. Aaron got very excited about a video from You Tube that he wanted to show me. Even though I was tired, I agreed to watch the video, which was an old music video of Billy Joel’s song Uptown Girl. Aaron loves this song and he was as tickled as he could be to share this video with me. He giggled and clapped and kept turning to look at my reaction as we watched this video. He really was hilarious with his reaction and I was laughing along with him, but not for the same reasons that he was laughing. We even watched another video of a second song. It was a fun way to end our day.
Just as Aaron turned the video off, Gary came up the stairs………..also very tired and walking slowly because of his aching back. Of course, Aaron wanted to show Dad the Uptown Girl video and of course Gary just really wanted to go to bed. But Gary came back to Aaron’s room and stood there through the whole video, aching back and all, enjoying the moment with us and laughing as I did at Aaron’s delighted reaction. Then it was time for goodnights and sleep well and love you, Aaron…………..except not for Aaron, who wanted Dad to also watch that second video. But Gary said no, and explained that it was late, even as I was telling Aaron that Dad’s back really was hurting and that he needed to go on to bed.
Aaron didn’t care at all about our tiredness, or the lateness of the hour, and certainly not about the fact that his Dad’s back was hurting. His full focus was on that second video that he wanted Gary to watch. We went on our way to our bedroom, but I came out later to answer a question of Aaron’s and found that he was escalating upwards in his anger. According to Aaron, Dad didn’t care and Dad was mean………..even as I calmly reminded Aaron that Dad had watched the video that Aaron really wanted to show him and that Dad had laughed and that Dad had answered Aaron’s questions about the video…………yet none of this mattered to Aaron. He was focused on what Dad had NOT done instead of what he HAD done.
Then I explained to Aaron that Dad’s back was hurting and that he needed to lay down, but Aaron actually said these words, “Why should I care?” As I reminded Aaron of who had upgraded his computer recently and who had gotten him a new chair and who had done this and done that for him……….I could see Aaron softening a little but still being belligerent because his immediate desire had not been fulfilled. His selfishness was on full display, ugly as it was, but in Aaron’s unfiltered world it was out there for all to see.
This whole scene reminds me so starkly of my relationship to the Lord. How self-serving and demanding I can sometimes be with the One Who loves me so much! God gives me blessing after blessing, but how often do I focus on what I don’t have or on what I perceive as unanswered prayer? How many times do I not stop to thank Him for what He has done in so many areas of my life personally or in this world in general? Do I praise Him and acknowledge His faithfulness and His power and His love? Or do I whine and complain and stay self-focused? God has dealt with me over the years about these very issues……..about the importance of praise and worship in my prayer life………of seeking His will in my requests and not my own will………..of the attitude of gratefulness that we are reminded of so often in scripture.
Even as we try to patiently understand and continually work with Aaron on being less “it’s all about me”, so I know that God looks down in love on Patty and must sigh at my self-centeredness. When I see Him in that light, I feel like His child for sure and I am very thankful that He is a long suffering and loving Father to me.
We’ll keep working with Aaron………….and God will keep working with us.
I know I sound like a broken record……….very similar to Aaron, actually………..but I tell you, Aaron notices everything. The tiniest details of the world around him rarely escape his attention. And then he talks about what he has observed. He also never seems to tire of noticing the same things over and over again, and talking about them over and over again.
For instance, I know that when we drive by the pasture near our house, Aaron will always look for the cows. He will often ask if the cows are out and if they’re not out, then where are they? He will also ask who we think the cows belong to? The man in the white house or someone else? A couple miles on up the road we always pass another field on our way to meet Aaron’s day group. This field has big black bulls who sometimes are grazing where we can see them as we drive by. Aaron is fascinated by the bulls. One day we had an interesting conversation about the purpose of bulls. Ahem. He did NOT seem to notice how quickly I glossed over that answer! Anyway, nearly every day as we drive by that field, Aaron will wonder if the bulls are out and if they’re not out……….and they often are not in sight………..he wonders where they are, and why they aren’t out, and where do they stay. Recently we drove by the field and there they were, close to the fence, grazing happily. Aaron exclaimed, “There’s the bulls! They’re out of that farm cage thing!”
Um, Aaron, that’s a pasture…………..not a bull zoo.
On up the road we pass a dentist’s office. Aaron loves their concrete parking barriers. Why does he love those particular concrete barriers? Because they are painted in stripes! They stand out to Aaron as unique and he loves anything unique. And how many times have I heard him say, “There they are, Mom! Candy canes!!”
He notices the old car that’s always parked in some one’s driveway every day. He’s fascinated with RVs…………..”Mom are they expensive because they’re portable houses?” And yesterday he excitedly said, “Mom, guess what I saw on the way home? I saw an RV towing its OWN car! Is it OK for an RV to tow its own car?!” I try to explain these important matters to him, even as I’m distracted with supper preparations or some other chore……..and he won’t leave until he’s satisfied with my answer. Therefore, I know that I need to do my best to answer him or to explain things, or he will stay there until I do. Or until I tell him to Google it!
Yesterday he was very enthused as he told me about the fun thing that someone made at Paradigm using Chex cereal and chocolate and this and that………but he couldn’t remember what it was called. I told him it sounded like Puppy Chow and he said, “Yes! That’s it! And it was all covered with confectionate sugar!” So I showed him some confectioner’s sugar, which he thought was wonderful, and then as he pointed out the white marks all over his shorts, he said, “That confectionate sugar is spready!”
Yep, Aaron………..looks like to me you spread it all over your shorts.
But he wasn’t through with the rundown of his meal at Paradigm. “Mom, I ate some mustard potato salad. And then I had some of those potato chips………you know, those RIGID potato chips!”
Ah, yes, ridged potato chips!
“Yeah. I don’t like RIGID potato chips!”
What?! You don’t like potato chips with ridges?
“No. They look like they have speed bumps that are on the road.”
I would never, ever have thought that the ridges on potato chips look like speed bumps on the road. But Aaron does……….because Aaron notices every RIGID ridge on those ridged chips………….and he notices every speed bump………..and he notices that they are very much alike.
Amazing!
Ruffles Have RIGID Speed Bumps!! Buy some today! But slow down and watch your teeth!
Aaron’s been hard to rouse out of bed for the past several days. I keep the monitor on at night and haven’t heard any seizures so I don’t think it’s seizure related. Maybe he’s staying up too late reading at night. Or maybe it’s because we take his keyboard away at night and so he doesn’t have the excitement of a game to wake up to each morning.
He also wakes up talking about very tired he is. Last week he said, “Mom, I slipped out of bed at 6:17.”
You slipped out of bed? “Yes! I was on the edge and then I just slipped out!” I asked him if his sheets were slippery but he didn’t react to that like others might have. Sometimes I think I’m quite funny but Aaron rarely thinks I’m quite funny……….which I also find to be quite funny, actually. His lack of reaction to my jokes really is hilarious sometimes.
Back to his slipping out of bed…………..I said, “So you mean that you FELL out of bed?”
“Yeah, I slipped out of bed. Have you ever slipped out of bed?” Well, Aaron, I have slipped out of bed but not the way that you slipped out of bed. I actually slipped out of bed whereas you actually fell out of bed, obviously, etc., etc., etc. I had this conversation with myself, by the way – not with Aaron. He would not have valued it like I did, believe me.
This morning he was snug under his covers and did not appreciate my efforts to get him up. I was kind; I was soft spoken; I didn’t linger long or have many words…………in other words, I did everything possible to ease him into this cruel reality that he was going to have to get out of bed. When I have to go in and wake him up, he’s often grouchy. When he gets up on his own terms then he’s usually in a better mood. Finally, I walked past his bedroom and on my way downstairs I simply told him that I was going to pour his coffee and get him a bowl of his favorite applesauce. Soon I heard him laboring down the stairs and as he walked into the kitchen, I tried to ignore him and be unaffected by his grouchy face. It’s better to be low-key when Aaron is grumpy. I fixed his applesauce, laid out his comics, and poured his coffee………..all while listening to him tell me once again about how tired he was and that he didn’t want to be bothered.
OK, Aaron, I’m going back upstairs to finish getting ready. Off I went, knowing that he wanted to be alone…………or at least ACTED like he wanted to be alone. He polished off his applesauce quickly, and soon I heard him laboring back up the stairs. And Aaron, who wanted to be left alone and not to be bothered because he was so tired, walked into my bathroom where I was getting ready. He was carrying his coffee, which he carefully placed on the bathroom counter. He sat down beside his coffee, getting settled and comfortable in the room with the person that he didn’t want to be around, according to him. He sat there looking at me as I just ignored him and kept getting ready. I didn’t say a word. He slurped some coffee. He wiggled into an even more comfy position. He slurped some more coffee. He watched me closely and I just kept quiet, not acknowledging him in any way.
Finally he broke the silence and said, “I wish you would just leave me alone.”
Seriously, Aaron? So why did YOU come up the stairs and why did YOU come in my bathroom and why did YOU sit down here and why did YOU settle here to slurp your coffee………..but you wish that I would leave YOU alone? Oh, never mind. Another conversation with myself! I talk to myself a lot around Aaron, and he doesn’t even know it.
The fact is, he doesn’t really want to be left alone and ignored, no matter how much he tries to act like he does. Leave me alone, Mom…………but don’t really leave me alone. Don’t really ignore me.
And as he showed me once again this morning, even when I’m really trying to ignore him, he won’t let me! He can’t verbalize like you and I can, but he does manage to get his message across.
I can get my message across, too. Tomorrow I may just show him what it means to be PUSHED out of bed!
Those of you who have followed Aaron for a long time know that he talks a lot about his weight. He makes many comments about losing weight, such as, “Mom, am I losing weight?”………..even as he’s cramming his fifth croissant roll into his mouth from the stash he bought at Wal-Mart. Or, “Mom, have I lost weight?”……….as he turns to look sideways in the mirror. Or one of my favorites: “Mom, am I halfway losing weight?” Many of us adopted that statement as our mantra when I first publicized it…………we’re all halfway losing weight!!
Aaron does love to eat, though, like most of us do – and so his desire to lose weight is offset by his desire to eat. He makes excuses for what he eats, like the time I made Rice Krispie treats and he asked if he could have one. Before I knew it, he was walking across the kitchen with a huge stuck-together Rice Krispie treat square. “Wait a minute, Aaron!” I declared. “What on earth are you doing?” And he replied, “Mom, I was just trying to pull one off and it did this!”
So you couldn’t correct what it did, Aaron? How convenient!
Or the time the staff at his day group fixed burritos and Aaron was excited to tell me all about it. “Mom! Today they fixed burritos! They did this thing that if you ate one then you could have another one!”
Really, Aaron? How many did you have? He answered, very flatly, “I had four.” FOUR? You had FOUR burritos? Good grief!
Then another meal at Paradigm featured some garlic cheese bread on the side. Of course, we heard his assessment of that when he got home. “Mom, we had some mushy bread at Paradigm today. It had garlic and cheese on it.” I told him that this bread sounded yummy despite the fact that he thought it was mushy. He said, “Well, I didn’t like that mushy bread but I ate a bunch of it.”
Why does he eat a bunch of something he doesn’t like anyway?!
Aaron is specific about his food, such as when I was serving him some mashed potatoes. “Mom, I want the gravy INSIDE the potatoes.” It’s funny how well I understand him…………kind of scary, too.
So this morning Aaron strolled into my bathroom as I fixed my hair. He had just showered and I was not prepared to see him walk in wearing only his underwear. Modesty is not his strong point, no matter how often we stress that is should be. As I said, “Well, Aaron!” ………..and he was totally unaffected by my exclamation………..I realized that he was on a mission. I assumed we were about to have another “am I losing weight?” conversation, when instead he said, “Mom? Am I getting muscles?” He then bent his arm and flexed his muscles, and stood there waiting for my answer.
How on earth do I not laugh out loud when my grown son is standing there in his favorite striped briefs, flexing his arm and asking me if he has muscles? Well, I did laugh and he smiled but still waited for my answer as he continued: “Am I getting strong? I wanted your opinion.” I had no idea that Aaron ever thought about the manly trait of being strong. I’m still wondering where this all came from.
In the meantime, Aaron, you want my opinion? Yes, you are getting strong. That’s why I had you carry the big bag of dog food out to the van for me on Saturday. He was pleased with that answer, even as I was coming to grips with this new side of my boy who is really a man.
You want another opinion? Please put your shorts on…….your carpenter shorts! Spare me the sight of you flexing your muscles standing there in your underwear.
It’s enough to make me lose weight, and not just halfway!
He Said What?! 