Special Needs Adults – Page 34

The Way Aaron Wants Things

Transition: a passage from one state, stage, subject, or place to another; CHANGE. (Webster’s Ninth New Collegiate Dictionary)

From Online Asperger’s Syndrome Information and Support (O.A.S.I.S.): Individuals with Asperger’s are easily overwhelmed by minimal change….. MINIMIZE TRANSITIONS.

Guess what we are in the middle of with Aaron?

CHANGE!!

TRANSITION!!

And we cannot minimize this transition period. Our motto, and Paradigm’s motto, this week is “Hang on, breathe deep, and hope and pray for the best.”

Aaron returned to his day group, Paradigm, yesterday – almost a month to the day after he entered the hospital for a week. After returning home from the hospital, he had doctor appointments…..he had lots of healing to do……lots of strength that needed to return…..and setbacks, like his rash last week that needed to be treated. We also took a trip to Houston over the Fourth of July, spending five fun days with Andrea and on the road. Life was good for Aaron, especially after he started feeling better. He loves nothing more than staying home with his computer and movies and games and television. Throw in an occasional shopping trip, eating out or bringing in take-out, and what’s not to like?

I’ll tell you what’s not to like. Returning to the real world, to a schedule, and to Paradigm is what’s not to like…..for Aaron.

Transition….big time!

One evening I was in Aaron’s room as he got ready for bed. I had helped with putting Mr. Snake, Mr. Skunk, and Mr. Frog in his bed. Every bit of each stuffed animal must be just perfect, placed exactly where Aaron’s unwritten rules say they should go. I thought I had them perfect, but they were just a tiny bit “off” and so Aaron pulled back the covers I had pulled up, and he rearranged them just the very littlest bit.

I chuckled at this. Then Aaron said, “I want things the way I want them.”

No truer words were ever spoken! This describes Aaron better than any concise statement I could have ever tried to formulate.

Aaron wants things the way he wants them. I guess we all do, really. But for Aaron, as with so many autistic individuals, the desire is carried to the extreme at times. Many times, in many ways. It’s very difficult to dissuade Aaron from wanting things the way he wants them, too. And to accept the fact that life doesn’t always allow him to have things the way he wants them.

Staying home has always been the way Aaron wants his life to work. So being home for all these weeks was just the best case scenario for our Aaron. Going back to Paradigm is the worst thing, in his mind, that could have happened. And it happened. It’s happening now. And we are hanging on for the ride.

Yesterday wasn’t bad. Aaron was a little reluctant about going, but he and I walked into Paradigm with Aaron beaming. He loved seeing Barb and Brandy, and later seeing Bryan. He loved his friends saying, “Hey Aaron! We missed you!” He loved telling them about his trip to Houston. He loved going with Bryan to help lay tile at a Paradigm house, and eating lunch at Wendy’s. When he came home, he told me all about his day. He showed me his receipt from Wendy’s. He pulled out a business card from his pocket that he had gotten at a building supply store with Bryan, and he added it to his other business cards that he has confiscated over the years. He also pulled out of his other pocket some change that he said he found on the floor at Paradigm. He listened to my skeptical response. He pulled out his billfold. Finally his pockets were empty, and he went happily about his evening.

But today…..today wasn’t good. Aaron didn’t want to go this morning. He made that known at home by continually telling me that he wasn’t going today. Finally he got in the van, and he was fairly pleasant on the way to Paradigm, although still saying that he didn’t want to go. I’ve talked to him about a special meal on Friday to celebrate his first return week to Paradigm, but he told me this morning that he didn’t care about a special meal.

It’s best when Aaron is like this to just keep my affect as low as possible. If I react strongly, then he will react even stronger. Trust me….I have learned this. So the less I talk, the better. The less I react, the better. I may tell him I’m sorry, or that I understand, but trying to lecture or to make a point is useless. When Aaron is in his “I want things the way I want them” mood, then it’s best to be as quiet as possible.

I pulled up to Paradigm. Aaron crossed his arms and refused to budge. I calmly urged him to go on in and start his day. After a short time, he opened the door and got out, but his face was a picture of real anger. He slammed the van door, and then walked with sloping shoulders, slowly, up the sidewalk. He looked like the weight of the world was on his young shoulders. Then he stopped, and sat down in the rocks beside the sidewalk. Melinda was just going in, so she stopped and talked to Aaron. I decided to drive away as Melinda and I waved.

I guess that she talked to Aaron awhile, and then Brandy came out to talk to him. She sat in the rocks with him, on his level, and he cried…..a sure sign of great frustration. They went on a drive and Aaron calmed. Bryan came back to Paradigm to pick Aaron up and take him to help him lay tile again, I assume. Aaron enjoys helping Bryan with house jobs. And I’m thankful for the gentle care that the staff at Paradigm gives to Aaron. Their understanding, and the fact that they “get” Aaron, is a great relief to us.

I hope that Aaron’s having a good day. I suspect that he’ll come home happy again, full of talk of his day. I don’t know what tomorrow will hold when it comes time to walk out the door again and face another day.

Aaron’s greatest challenge in life is to learn how to process change…..how to transition from one way to another way. Sometimes he surprises us. In Houston, when we would tell him of our day’s plans, he would automatically say, “No!” No to the beach…..no to the boat ride…..no to shopping, although we totally expected that. But it was easier for Aaron to want to stay in his comfortable world, watching his movies at Andrea’s apartment and playing with her dogs.

Yet when he went to the beach he loved it. He loved the boat ride. He endured the shopping. And of course, he loved eating out! I’ve reminded him of how he said no to things, and then how he really enjoyed those things once he did them. This fact seems to mean nothing to Aaron now. His mind is closed to this idea.

He wants things the way he wants them.

And our job is to be patient, to not give in to his wants, to not lose our cool, and to ask God for lots of wisdom.

If only Aaron wanted things the way I want them!!

Yeah, I laughed at that, too.

Home From the Hospital

Friday, June 19, marked a full week that Aaron had been in the hospital for low sodium and pneumonia. He was feeling better that morning. He still had a wicked cough, but his fever had been gone for over 36 hours and he was generally feeling much better. In fact, the better he felt the grouchier he became. As he felt better, he missed home more. He missed his life and his routine. He was more alert and aware of how abnormal this hospital life was for him. So the better that Aaron felt, the harder he made life for those who were caring for him. All he could talk about that morning was going home. He didn’t like anything that anyone tried to do for him, including me. He tolerated his chest X-Ray, his pills, and his other morning interruptions…..barely.

I saw his doctor in the hall and told her that she better put on her very thick skin when she came to see Aaron that morning. She just laughed, and I told her I wasn’t kidding. Aaron was grouchy, in all caps. GROUCHY!! And wanting one thing…..home! So later she came in with a huge smile, and of course Aaron told her immediately that he wanted to go home. She told him that she had good news for him, then, because home is where she said he could go. Then he smiled along with her, for the first time that morning, and life was good again.

Of course, when one of the aids came in a few minutes later, Aaron looked at her and said, “I don’t need you now!” And I made him apologize, even as she just laughed and knew that Aaron was very happy to be leaving. He just had a very blunt way of letting that fact be known. The Occupational Therapist came in to give Aaron a shower and try to give him some shower pointers, but he actually just showed her how he showered and didn’t really listen to much of what she said. Physical Therapy had Aaron walk up and down the stairs one time, which he willingly endured because it was just another block to check before he headed out the door.

Soon the wheelchair containing happy Aaron was on the elevator, along with our cart full of a week of accumulated “stuff”, and before long we were in the van, waving goodbye to the nurses and driving away. Going home at last! But a stop at McDonalds was first as Aaron asked for a burger and fries on the way home. We picked up lunch, and headed home to eat and to settle in to the life that Aaron had missed.

Aaron was very, very weak. He needed lots of help with walking, with stairs, and with the bathroom. He was home, but life wasn’t going to be normal for some time. He finally ate, and slowly we made it upstairs to his room. He was so happy to be there at last. He wanted to watch his new Tremors movie for real, on his DVD player instead of the portable player. So he sat down in his chair, and he got his things around him fixed just right. His clock next to his desk had to be positioned just so. The items that he keeps near him on his bed were placed just right, with his stack of books on the corner of the bed. On top of those was his notebook in which he kept his record of what movie chapter he was watching. His pen was placed precisely on top of the notebook. His back scratcher was set beside that pile of books. His Gecko from Glenda was settled in front of his clock. He looked around and checked to see that things were exactly as he wanted them as I stood behind him silently watching, and silently marveling at his precision with every item.

Then he saw a DVD that needed to be put on his shelf of DVDs. He asked if I would put it there, so I leaned over and placed it at the end of the row. He just stared at it, and I waited. Nope. It wasn’t right. So I repositioned it several times before finally finding that he wanted it leaning a little at the top, and he wanted his special large rock to be placed near it so it wouldn’t slide out of place. There! It was finally according to Aaron’s specifications, and I was free to leave while he watched his DVD, content that all his things were in their perfect place as they should be. At home. Where he should be, and where he was so happy that at last he was there.

Aaron spent much of that first weekend sleeping in his chair in the family room, his animal print blanket stretched over him. He coughed a lot, and he tried to walk by himself, but it was very slow going. He needed lots of help with everything. Coming home was wonderful, but it didn’t mean that Aaron was well and strong right away. For that reason, he was pretty disappointed. He loved being home, but he wanted his old body back as much as he wanted his old life back. Both would take awhile to return to normal, and despite our reminders and assurances, Aaron had some frustrations.

“I’m just so tired of myself!” he blurted out on Saturday, overcome with frustration at his weak body. That made us so sad, but we could only offer encouragement that every day would be better. And it was. He enjoyed visits from friends, including Rosa and her mother, Louise…..complete with pizza and balloons! He enjoyed his room and his family room chair, watching Wheel of Fortune, and being with Jackson, and just everything. And each day was better than the one before. Each outing found him getting a little stronger, his stamina increasing slowly but surely. After several days, he and I played Skip-Bo, with Aaron checking his watch to keep track of time, just like always.

Perhaps what he loved the very most, and what he had missed the very most while in the hospital, was his own comfy bed. The first night back at home, when it was time for bed, I was helping him get everything ready. Every blanket was perfectly placed, every wrinkle straightened out, the pillow put just in the right place, and then the sheets were pulled back so that he could place his snake and his skunk under the covers. But now he had decided to add a new member to the mix. He wanted to add the soft green frog that Andrea had sent him while he was still in the hospital. So he rearranged Mr. Snake and Skunk in order to make room for Mr. Frog, stood back to observe and to rearrange, and finally he was satisfied.

He climbed in his bed, after writing his “Time to Bed” in his log book, and I pulled his covers up around his face. Then he smiled the sweetest smile in the world as he moved his legs back and forth in his wonderful bed that wasn’t a hospital bed. He was the picture of utter contentment. He pulled his arms from under the covers and held them up to me, so I leaned down and gave him a goodnight hug.

“Good night, Aaron,” I said as I hugged him. I arranged the covers up around his face again, and there was that smile. He looked at me for a few seconds.

“Mom?” he asked. “Do you want to say good night twice?”

What a precious moment! Of course I said yes, and so out of the covers came his outstretched arms. I leaned down to hug him one more time, thankful that our Aaron was home in his own bed. The hospital stay was scary. His health was uncertain. The outcome was unknown for days. I had stretched my arms on this bed days earlier as I asked God to heal him. Now here Aaron lay, smiling and hugging, wanting to say good night twice. It was his way of telling me how very happy he was to be home. I understood and I agreed.

I left Aaron to his dreams. And I didn’t go to sleep until I thanked God that on this night, I got to say good night to Aaron in his own bed…..twice!

Has Aaron Called You a Jerk Yet?

Aaron’s been home from his hospital stay for a week now. He’s doing well, regaining his strength and overcoming side effects of some of the strong meds that he was on. This was Aaron’s first major hospitalization for a serious illness, and we certainly pray that it’s his last. It was interesting to watch him in that setting, and sometimes sad, sometimes funny, and often frustrating. Gary and I were so thankful for the very patient and understanding nurses, aids, and doctors who cared for Aaron, for caring for special Aaron at times takes special calmness…..and some thick skin as well.

We were actually amazed that Aaron handled hospital life as well as he did. He was totally out of his element, out of his routine, and out of anything remotely familiar. He didn’t have his bed, his blankets, his clock, his animals, and so many other things that make Aaron’s life his life. For the first several days, Aaron spent more time sleeping than anything. But he still had to answer questions, some of which he thought were particularly dumb. He really didn’t like questions pertaining to his bowel habits, and sighed and mumbled a definite, “HUMPFFF!” It took him awhile to understand the annoying catheter, and let’s just say that bathroom trips for the other were very dramatic.

“Are you going to flush?” Aaron would ask immediately. Because this is what he does at home, and these nurses were taking too long, he thought.

“Yes, we’ll get that in a minute, Aaron,” they would answer as they tried to balance very weak Aaron and keep him from falling.

“When are you flushing?” he would quickly ask again.

“We’ll do it in a second,” they replied again.

“But you need to flush!” Aaron repeated.

“We know, Aaron. We will,” they responded.

“When are you flushing?” he asked again.

And I just sat out in the room smiling, because I know Aaron and I know that this flushing business is supposed to be done a certain way by him. He was realizing that he couldn’t count on the nurses to do it correctly at all. No big deal to you and me, but huge to Aaron.

He wanted some normalcy, so on the day that he was admitted and I was going home in the evening, I stood over his bed and told him that Dad was staying while I ran home. “Mom, can you bring me my watch and my glasses?” Of course he wanted those things. When I returned with them, he immediately put his watch on his arm, pushed up high the way he likes it, and there it stayed for the remainder of his time there.

He had been wanting the movie “Tremors” that he had seen in Wal-Mart. In the midst of his fever, coughing, and pain, he asked if he could have that movie. On Sunday I ran up to Wal-Mart nearby and got it for him along with some head phones, for Aaron MUST listen to movies with head phones. He tried watching it right away that day, but he mostly slept through it.

On Sunday morning, his coupon cutting day, he remembered. “Mom? I just want to go home and cut coupons.” I felt so sorry for him! But I assured him that I would save the coupons for him.

In his sleep one time, he said, “This is not fun.” Again my heart hurt as I looked at him with needles and tubes and gadgets all around him, burning up with fever and coughing, trying to swallow pills when needed. Then later that same night, he unexpectedly said, “I love you, Mom.” For Aaron those words don’t come often or easily, so with surprise and with hidden tears I stood at his bed and welcomed his hug. He was scared and he was so sick. I was scared, too, but I couldn’t let him know that.

You can barely see his watch on his arm. 🙂

Several times that week he looked at the clock sometime after 7:00 at night, and told us that he missed Wheel of Fortune. It bothered him to miss his show, but he was so often sleeping soundly during that time, and Gary, who was with him then, wouldn’t awaken him for that. I wouldn’t either, so we again assured Aaron that he could watch Wheel of Fortune when he got home. His routine was totally a mess!

His bluntness was often embarrassing to us. I was so very relieved that the staff understood the autism, and that they made sure to brief all the staff that came on during the shift changes. I went down with Aaron to get another chest X-ray one morning. The technician said, “Well hello, Aaron! Do you remember me? I took your X-ray yesterday.” Aaron immediately replied, “Who cares?” I heard it out in the hall and Aaron heard me calling his name to correct him, but the nurse standing there with me laughed.

All the nurses and others assured me that they understood Aaron, and they truly seemed to do just that. Yet still I would find myself apologizing and explaining, even as they told me that it was fine. They genuinely seemed to like Aaron, even when he would call them a jerk. Yes, he called some of them a jerk, especially when he was feeling terrible and didn’t want them messing with him. Once I went out to the nurse’s station, and they were laughing, asking each other if they had been called a jerk yet by Aaron. Proud Mom moment. At least they thought it was funny. Andrea told me that Aaron just said what lots of other patients wish they could say when they felt bad.

There were so many moments with Aaron. One night, late, he just wanted to go to sleep but had to take his meds and have his vitals taken, a new IV started, and so forth. He was so tired, and when the nurse was finished he said, “You can go out of my room now.” And one day when the sweet nurse’s aid walked in, I said, “Aaron, there’s your buddy.” He looked at her and said, “You’re not my buddy.” Very matter of fact, not hatefully, but he made his point.

Physical therapy was interesting. Aaron didn’t want to answer all their questions on their first visit…..questions about our house so they would know what he faced when he went home. He sighed a lot and rolled his eyes a lot, and I fussed at him a lot. One day he was in bed when they came to walk him up the hall, so out of bed he came and up the hall he walked. We knew that Aaron needed to sit in the chair when he returned to his room, but he walked over to his bed, looked down at it, and told us, “I said I want here.” Nope, Aaron. You’re not getting your way, even if you call us jerks.

When his fever finally broke on Wednesday night, and he felt much better all day on Thursday, he was even more vocal about how frustrated he was. Feeling better made him miss home more, and missing home more made him more vocal. He never totally lost control, but he was more unhappy and bossy, that’s for sure. I told the doctor on Friday morning, before she came in the room, to be sure that she had put her thick skin on. But when she came to see Aaron, her face was all smiles. His chest X-ray that morning was better, and she said he could go home! YAY!! Aaron smiled a huge smile, and was the happiest I had seen him all week.

One of the last things he had to do was let Occupational Therapy come and give him a shower. He was willing to do that. In fact, he had enjoyed showers the past two days. He did think sitting on the chair was pretty weird. The occupational therapist was there to observe Aaron and to show him some ways that he could shower more safely. I listened as I packed up our belongings out in the room.

“Aaron, first you need to wash your hair,” she said.

“No,” Aaron replied. “I do it this way.”

And as he did it his way, she tried to instruct him. But Aaron told her that he did it THIS way. She finally told him to at least wash the top of his head, too. My former suspicions about his showering were confirmed.

This scenario continued as I listened and quietly laughed.

“Aaron, now you can do this,” she would say.

“But I like doing it this way,” he would reply.

“OK, let’s do this,” she said.

“No, I do it like this,” Aaron stubbornly replied.

On and on it went, with the OT giving Aaron suggestions while Aaron would have none of it. Nope, he was not about to change how he showered or how he dressed afterward. I realized after several minutes that this nice lady wasn’t instructing Aaron on how to shower. He was telling her and showing her how he showered. She was basically helping him shower, his way. I was thankful that she helped Aaron shower, and I was hoping that maybe something she said stuck with Aaron, but I seriously doubted it. Aaron’s routine isn’t changed so easily, even if you are an OT.

We left the hospital with hugs from our wonderful nurse that morning and a big smile from the aid, the one who was Aaron’s buddy whether he agreed or not. I’m sure Aaron left his mark on everyone. I have the utmost respect for the hospital professionals who worked so well with Aaron, even when he was grumpy and at times rude.

And was Aaron ever glad to get home! That story will be for another time.

Aaron’s Hospital Stay

Aaron came home from his day group on Thursday, June 11, in his usual way, bounding in the hall door from the garage with talk of what he had done that day at Paradigm. It was later, as I stood in the kitchen fixing supper and he sat in his family room chair, that I noticed him coughing. It was just a dry cough, nothing major, but it was persistent. So I leaned around the corner and asked him if he was all right, and he answered in his usual droll way that he was just fine. But as we ate supper awhile later, Gary and I noticed that he was very slow. A couple days earlier, on Tuesday, Aaron had four seizures. That wasn’t unusual for him, but on Wednesday he was himself again. To be more lethargic on Thursday was concerning to us.

During Wheel of Fortune he wasn’t animated or excited at all. I felt his forehead and noticed how warm he was. Sure enough, when I took his temperature it was 102.4. The next morning I called McConnell Air Force Base to make a same day appointment. Aaron kept sleeping until I finally went in his room and roused him enough to take his temperature again. It was still 102.4. He had a very hard time waking up enough to take his morning pills, and then went right back to bed. As I continued to check on him I became very concerned at how he couldn’t wake up, so I finally made the decision to take him to the ER. McConnell agreed with me, so I worked to get Aaron awake enough to dress. I then had him sit on the floor of the hallway upstairs and scoot down the stairs on his bottom. He would scoot down one stair and fall asleep until I jostled him……then scoot down another stair and fall asleep…..all the way down the stairs.

We slowly made it to the van, and later at the ER a male nurse helped Aaron out of the van and into a wheel chair. Still he slept. We got him on the exam table and he slept again. Somehow he stood up for a chest X-ray, but he slept through the doctor’s exam, the blood draw, insertion of the IV, and even the catheter. The doctor found an ear infection, so I thought that Aaron’s body was just fighting hard and the sleeping was his reaction to that. I felt like we would soon leave with an antibiotic prescription, go home, and get Aaron well.

Yet the concern on the doctor’s face as he kept coming in the exam room was raising my own concern as well. Finally he told me that the blood work had shown Aaron’s sodium to be dangerously low. It should be at 135-136, but Aaron’s was 121. Then he said that Aaron would need to be admitted to the hospital to address the sodium issue, and to find out what else was going on with him. My mind was whirling as I called Gary and as we tried to decide if Aaron would stay at St. Teresa Hospital or go elsewhere, although that decision was made for us by insurance. We would stay at St. Teresa. It wasn’t long before we were on an elevator headed up to the small ICU unit, my mind still trying to adjust to all this. I looked down at my very sick son and wondered about the “what else” that the ER doctor had mentioned. What else was going on inside his body?

There Aaron lay, all hooked up to monitors and tubes, his body struggling against that unknown something that was making him so sick. He tried hard to wake up enough to answer nurse’s and doctor’s questions. He sometimes showed his definite personality, like when the nurse asked him a question about his bowel habits. He gave her a rather disgusted look and just answered with a “Hhmmpf!” When Gary was there, and I left later that evening to run home, Aaron asked me to bring him his watch and his glasses. He didn’t wear his glasses a lot during those first few days, but he put his watch on his arm right away, pushed way up the way he likes it. It was a piece of normalcy in this crazy place in which he found himself.

Over the weekend, when friends came to visit, Aaron would cry. He showed emotion that was rare for him. He told me later that he was sad. I told him that we understood, but I didn’t tell him about my own sadness. Or about those icy fingers of fear that were trying to grab at me. It was not only sadness but fear I was feeling as I watched the blood draws…..the strong antibiotics flowing through the IV into Aaron’s body…..the fevers that sometimes rose to 104.5……the CAT scan…..the X-rays…..the spinal tap……the kidney specialist and the infectious disease doctor…..the testing for West Nile and tick borne disease…..the low sodium issue.

Early on Saturday morning, as I have done many times in the past during stressful times, I asked God to give me a special verse. I asked Him to speak to me in the way that I needed at this time. There in that hospital room, with Aaron sleeping nearby, God gave me Ecclesiastes 11:5: “As you do not know the way the spirit comes to the bones in the womb of a woman with child, so you do not know the work of God who makes everything.” That was it! I didn’t know what was going on here with Aaron. I didn’t know the work of God but I do know God. I know that He loves us and I know that He has a work that He is accomplishing. I know that I can TRUST Him, regardless of what else I don’t know.

It was very hard to watch Aaron suffer. Hard to see the pain in his face when he coughed….the struggle to deeply breathe and to talk……the pain of needles and tests. It was easy for me to let fear take over as I helplessly watched our Aaron and wondered still about the “what else” that was so elusive to find in his body. Soon another principle from scripture came to my heart. “In everything, give thanks.” I went home one evening while Gary sat with Aaron, and I knelt by Aaron’s empty bed in his bedroom. His stuffed snake and skunk were still in the bed where he had left them. I stretched my arms over his animal print blanket and I asked God to please heal our son. I told God that I didn’t know about this work that He was doing, but I did trust Him. And I thanked Him for this time. That kind of thankfulness takes great trust in the One whom I was thanking, for sure, because I hurt for Aaron so deeply. But I also know God and I know that He can be trusted.

It was a turning point for me. My mother heart still hurt deeply all through that week in the hospital. One night, with eyes closed, Aaron said, “This is not fun.” There went my tears. And later, eyes still closed, he said, “I love you, Mom.” I leaned over his bed and he got as big a hug as I could give him. But I purposely stood there and voiced thankfulness to God, hard as it was, for this work that He was doing and that I didn’t understand.

Aaron’s chest X-ray finally showed pneumonia in his right lung. It was determined that he had Aspiration Pneumonia. Apparently, he aspirated some saliva during his seizures that previous week. He responded to a new antibiotic, was moved out of ICU to a private room, began walking with the help of physical therapy, and was soon clamoring to come home. I don’t know who had the bigger smile, Aaron or his doctor, when he was finally told that he could go home. On Friday, a week after being admitted to the hospital, he was wheeled out to our van and we took off for home…..after picking up his choice of McDonalds for lunch on the way. He is recovering his strength and his spirit, and some grouchiness, too.

There is more to write about this experience. About how Aaron’s autism affected his hospital stay, and about his tender return home to his world and his routine.

We’re so thankful for this outcome, but if it had been different, I pray that we would still be thankful. Thankful for the work of God who makes everything, even when don’t know or understand His work. When it’s all said and done, there is no better place to be than in His will as we watch His work and trust in Him.

Only If It’s Friday!

I just have to quickly share with you a perfect autism moment with Aaron that I had yesterday. One of the characteristics of autism that Aaron sometimes displays is that he doesn’t always understand jokes or irony. We had the funniest display of this yesterday that I’ve seen in a long time.

He stayed home yesterday because we had an appointment with his state insurance representative. I decided to make a quick trip to Dillon’s, and of course Aaron went with me. I told him that he could have his favorite Cheddar Pasta Salad for lunch, so he was very happy as we walked into the store. Aaron always gets a large container, by the way. That’s important to remember. Oh, and it’s also important to remember that yesterday was Friday.

We waited for awhile at the deli counter before an employee walked up behind us on her way to help us. Aaron was a tad impatient at having to wait, and was just ready to order his large salad. As the lady asked what we wanted, Aaron ordered in his usual way.

“Can I have a large Cheddar Pasta Salad?” he asked.

“Only if it’s FRIDAY!” she answered Aaron, with a big smile as she enjoyed her little joke.

And Aaron just stared at her. He didn’t smile. He didn’t laugh. He only stared at her as if she had three eyes.

I knew exactly what he was thinking. He was thinking that this woman was dumb. Of course it’s Friday, he thought. What is she talking about and why is she smiling at what she said? It’s just dumb.

Then Aaron gave a little grunt because he suddenly realized that something was expected of him, but he didn’t know exactly what that was. So he gave a small grunt of acknowledgement as I chuckled and said something about how funny that nice lady was. What I really wanted to do was bend over and begin a loud belly laugh, but I knew that would only frustrate Aaron further, so I resisted. And the look on the poor woman’s face was pretty priceless, although I felt a little sorry for her.

Then it got even better. There were no large containers on this Friday, so the lady said that she would fill two medium containers. Oh boy.

“But I want a large,” Aaron told her.

I then told Aaron that two of the medium containers equaled one of the large containers.

The nice lady began to fill a medium container.

“But I want a large,” Aaron repeated.

“Well, we don’t have a large but I’ll fill two mediums,” the lady repeated.

Aaron watched her closely as she filled the first medium container.

“I wanted a large,” Aaron said.

“Aaron,” I said, “two mediums are the same as one large.” I then pointed to the sample containers on display to prove my point.

“I can’t have a large?” Aaron asked.

Sigh.

“Look, Aaron,” I said. “You’re getting the same amount in the two mediums as you would get in a large. Maybe even more!”

He was quiet as the worker finished filling the second medium container. She handed them to us and wished us a happy day, saying nothing that time about it being Friday. Smart woman.

I put the two medium containers in our cart.

“So she didn’t have a large?” Aaron asked.

Sigh.

We walked off as I expounded on the wonderful qualities of getting two medium containers.

“But they didn’t have a large container?” Aaron asked.

I quit counting how many times during that short shopping trip that Aaron repeated, “She didn’t have a large container?”

Up one aisle and down another, Aaron was trying to process having to eat out of two medium containers instead of one large. Not even getting a bag of Starburst jelly beans deterred him from talking about the absence of his usual large container.

In this one little excursion to Dillon’s, I saw the complexities and the rigidity of autism in two distinct ways. It doesn’t matter how long I live with Aaron, it’s always amazing to see how his mind works. Plus it’s often downright hilarious.

And not “Only if it’s FRIDAY!” HaHaHa!

It’s every day with Aaron!

Some Special Heroes

Hero: One endowed with great strength or ability; one that shows great courage.

Don’t quit reading. I promise I’m not going to launch off into my opinion of Hollywood’s latest hero worship fiasco. Besides, those of you who know me know what I think about it….and I certainly don’t need to add my voice to the many voices who have so adequately expressed my views.

I was going to write this blog anyway, someday, but now I have many reasons to do so. And yes, a big reason is the messed up qualities that our culture is trying to cram down our throats…..not only the person this week but the people every day and every week that they try to convince us are worthy to be called heroes.

Another reason I want to write about some heroes I know is because of a conversation I had this morning with Barb, a manager at Paradigm and one of the kindest people I have ever known. She told me of a business owner across the street from Paradigm, Aaron’s day group. This man is not a nice neighbor to Paradigm. One day, as special needs clients were outside on Paradigm property, he told the Paradigm staff that they could “take their circus somewhere else.”

Someone hold me back! A circus?! Excuse me??

That poor man. He has no idea that he has heroes across the street from him every weekday. I looked around inside Paradigm today and I saw amazing young adults. Shauna gave me a huge smile from her wheelchair. Jessica waved at me and gave me a beautiful smile. Paul gave me a hug.

For years I have been surrounded by heroes…..by individuals who have extreme challenges, but display extreme strength as well. How often do we “normal” people stop to think about what these special people face every day of their lives?

Each of them has a diagnosis, but their diagnosis does not define who they really are. There is Epilepsy, Doose Syndrome, Autism, Prader Willi Syndrome, Spina Bifida, Muscular Dystropy, blood disorders, Downs Syndrome, Developmentally Delayed…..

But my friends are real people with real lives. They were named by their parents, who love them so deeply.

Jennifer

Darien

Johannes

Elijah

Christoph

Alyssa

Aaron

Nicholas

Bethany

Rosa

Kaleb

They each face, or have faced, more physical challenges than I have ever seen in my own life. Could I ever deal with even a fraction of what they handle, sometimes every day?

Seizures.

Taking medicines every day.

Facing the side effects of all the meds they take, which include being sleepy, dizzy, gaining weight, mood swings, organ damage, bone loss, etc.

Surgeries, some extreme.

Multiple doctor appointments.

Test, tests, and more tests.

Fear of infection.

This is just a very partial list of what they routinely encounter. They pick themselves up, every day, and they live. They live their lives to the fullest. Would I be able to function after having one seizure, or would I just go to bed for the rest of the day? How do some of them do it after having multiple seizures, sometimes daily multiple seizures?

But there is much more than just the physical part of their struggles. What would it be like to face the social aspects of living life every day with a disability or a diagnosis that hindered you from living like your peers?

Having to go to special classes at school.

Having an IEP.

Not going to college.

Wanting to drive but not being able to get your license.

Having seizures in public.

Looking different, possibly.

Being bullied or teased.

Not having filters, so you say things that others don’t like or understand.

Not having close friends, or any friends at all.

Not being invited to go out with your peers.

But our kids keep on going. Somehow they manage to not only live, but to laugh and to grow and to thrive the best they can. They jump over the challenges and push ahead, every single day.

I’ve watched Aaron on a seizure day as he still tries to smile, to get out of bed or off the couch, and to continue his day as best he can. I’ve seen him go back to hard situations, like after he’s had a meltdown, and face his staff and friends again. I’ve heard him say that he wished he could drive as he watched Andrew pull his truck into the driveway. It’s sad to understand that he can’t even go out on his own to get a hamburger without depending on someone to take him. I’ve been deeply touched as he watched his brother and sister grow and move on with life. It broke my heart when he came home from his special needs school one day and said, “Mom, I noticed that all those kids there have problems. What are my problems?”

And I want to say, “Aaron, you don’t have problems. You have challenges, yes, but you have overcome them every day of your life in ways I’m not sure I could. You are strong, and you are tough, and you are brave!”

You’re a HERO!!

And so are each of these wonderful young people that I’ve mentioned today. They are each full of courage and strength to live their days as fully as they can. They wouldn’t think of themselves as heroes, but I do!

And they don’t belong to a circus!!

They belong to a unique group of Super Heroes! They should be on magazine covers and cereal boxes and talked about on the news!!

But they probably won’t be. So look around you every day and find the true heroes among you. Smile at them, love them, encourage their families, reach out to them when you can, and pray for them.

I am very thankful to know so many heroes….TRUE heroes that fit that definition perfectly.

And someday I’ll see two other heroes that have already gone to heaven.

Ben.

And Katy.

They live on in our hearts, and especially in the hearts of those who knew them best.

Don’t listen to silly Hollywood stories and look at ridiculous magazine covers to find a hero.

I guarantee there are many special heroes around you every day who could be your example of strength and courage.

I’m so blessed to live with one! And to know many others!

Lights On. Lights Off.

There is something laying on the floor of our garage right now. It’s a baggie that contains some coins….some coins that Aaron needed to take to his day group today. The bag is on the floor of the garage because Aaron put it there. Well, he didn’t just put it there. He threw the bag down on the floor. He threw the bag down on the floor because he was angry. He was angry because he didn’t want to go to Paradigm today. He didn’t want to go to Paradigm today because of something that happened there on Friday. He didn’t have to go yesterday because of a doctor appointment and then a fun day with me…..so he doesn’t want to go today, either. Are you following me?

It’s how we have to follow Aaron. Living with Aaron means living with autism, and living with autism means that we often follow Aaron as he goes down one trail, switches to another, and back tracks to the first one, but is soon off on a wild tangent, and off we go. Living with Aaron and living with autism means that we must understand, as best we can, the things that Aaron can’t easily or sometimes ever express. At times it’s a fascinating journey. At times it’s a funny journey. And at other times, it’s a very frustrating journey. It’s really wild when all those emotions are mixed up into one ball. Boy, can we bounce from one to the other!

Anyway, back to the bag of coins on our garage floor. Aaron was awake a little after 5:00 this morning. I heard him go to the bathroom, but he never went back to sleep. He was in the kitchen watching me scramble Gary’s eggs well before 6:00. He ate some sausage and I took his coffee to his room. He came several times and stood behind my chair as I had my morning quiet time, sometimes talking and sometimes just staring. He showered and took his pills. And just under the current of his swirling mind, I knew what was there. He didn’t want to go to Paradigm. But when he saw that I was really going forward with our morning routine, like cleaning his glasses and handing him his wallet, he was not happy anymore. On the way to the van, he turned and threw the bag of coins on the floor. He left them there as we got into the van, and I am leaving them there for him to pick up when he comes home. But he went to Paradigm, was met by the manager who rubbed his back and calmed him down (I hope), and hopefully will come home with happy stories. And he will pick up the bag in the garage, because he needs to do that. It’s a small lesson, but a lesson regardless.

Sometimes we don’t necessarily understand what makes Aaron do certain things, but we know that these actions are set in stone. We are fighting a losing battle to try to change them. Like his sausage this morning. Aaron got his own silverware because he knew that Mom wouldn’t do it correctly. I knew what he was thinking as he reached into the drawer and pulled out his fork but also a knife and a spoon. Who needs a spoon for eating sausage? Aaron does. There’s no need to make a big deal about it or try to make him put it back. Why make it an issue?

And the family room lights. I don’t turn them on in the morning because we’re not sitting in there and so we don’t need the lights on, right? But every time Aaron walks through that room, headed for the kitchen, he flips the lights on. I flip them off at the first opportunity. He flips them back on. Lights on. Lights off.

This morning he walked into the kitchen. Lights on.

I soon took his coffee upstairs. Lights off.

He followed behind me. Lights on.

I came back downstairs. Lights off.

He came behind me again. Lights on.

I carried my own things upstairs. Lights off.

He finished taking his pills and then came upstairs. Lights on.

Sigh.

On the days that he is home and wants to eat lunch, he will eat only if it’s 12:00 or shortly after. He will not eat at any time before 12:00. Not 11:48. Not 11:55. Not even 11:59!!!! And if I ask him what time he wants to eat, he replies, “At the time for lunch!” As if Mom is a little thick headed, you know.

One day recently he said, “Mom, I’m sleepy. I think I’ll take a nap at 12:00.”

I said, mistakenly, “Well, it’s almost 12:00 now. You could go ahead and lay down.”

“But it’s 11:53!!!” he exclaimed. “It’s not 12:00!”

Well, of course. Whatever was I thinking?!

Wheel of Fortune is another one. It starts at 6:30, so Aaron has decided that he will turn the television on at 6:28. Again, not at 6:25 or 6:26 or even 6:27. No. Only….ONLY……6:28. He will stand in front of the TV, literally staring at the clock, until it is SIX…TWENTY…..EIGHT!!!!

It actually makes Gary and me smile.

Movie credits. Oh yes, movie credits. When Aaron watches a movie in his room, he watches the entire movie. But to Aaron, the entire movie means from the moment the DVD begins until the moment the DVD is over…..completely over. That means watching the credits…..every single bit of the credits, until there are no more credits to watch. He stares at them intently, too.

So yesterday, after Aaron’s doctor appointment and after eating lunch at Abuelo’s, we went to see San Andreas. He saw it at the theater on Friday, but he really wanted to see it with me. Yesterday worked out perfectly for that. For one reason, the theater wasn’t full at all and so I wasn’t as stressed about Aaron’s noises and rubbing his hands together when he got excited. And this is a VERY exciting movie. We had a good time, and when the movie was over I could tell that Aaron didn’t want to get up. Why?

Really? Surely you know. The credits!! Aaron would have gotten up if I had insisted, but I knew that watching San Andreas in the way that mattered to Aaron meant watching it to the bitter end…..which meant to the very long, last credit. Everyone had left the theater, and the cleaning crew stood in the back waiting on us to be finished, but Aaron and I did it. We watched every single line of every single credit for every single miniscule part of San Andreas. Aaron put his hands on the back of the seat in front of him, enthralled at getting to watch big screen credits all the way to the end.

This is what we often do as parents of Aaron, and as we live with autism. I entered Aaron’s world at that moment. It was actually funny and endearing. We left the theater laughing, and I laughed even more when Aaron bent over as he rubbed his hands together furiously, asking the ticket taker why San Andreas was “fictinous,” as Aaron says. The stiff, unsmiling ticket taker was rather put out at this odd situation and made some curt comment, which totally didn’t faze Aaron. That poor guy missed out on a wonderful opportunity.

I’m learning more and more to enjoy those opportunities to enter Aaron’s mind and to follow him on his paths. I am blessed to partake of Aaron’s world on most days, but there are many times when it’s hard and frustrating. Which brings me back to the bag on the garage floor. Hopefully, as he picks the bag up off the floor, Aaron will talk to me about what was really bothering him. Hopefully, he will learn that he needs to correct his own wrong actions. Until the next time he takes off down that trail of frustration, but we’ll deal with that as well.

Lights on.

Lights off.

Something About Subway

For some reason, whenever I take Aaron to Subway, I find that it’s quite an experience. Actually, I’m the one having the experiences as I watch Aaron and listen to Aaron and try to hush Aaron and so forth. What is it with Subway? Maybe because it takes so long to order there if anyone is in front of us, and if Aaron has time on his hands, there’s no telling what will happen.

Aaron told me after one of our trips, when he was with Zach, that they had gotten a sub at Subway. “Subway is a nutritious food area,” he told me. So earlier this week he asked me if we could have a sub on Friday night, and I told him that we would do this if he had a good week. So seeing that he had a good week, and seeing that Aaron never forgets any prospect of food, he and I were off to Subway shortly after he came home today.

I was hoping we were early enough to be there alone, with no one in front of us. No such luck. There was a mom with two children already there, just placing their orders. I told Aaron to slow down, that we would have to wait our turn, and I gave him the usual “Shhh” sign as he began talking loudly. It took several “shhhh’s” before he finally halfway whispered. I was trying to get Aaron to go ahead and tell me the kind of bread he wanted, and the kind of sub, but he said he wanted to wait until we got up to the counter……meaning that he would take forever to decide as he tried to find a picture to match his sandwich choice, identify the proper bread, talk about the cheese, etc.

In order to help locate the exact meat he wanted, he started edging closer to the family in front of us, craning his neck to look around their shoulders. I quietly motioned for him to stand back. He doesn’t worry much about other’s personal space and he definitely doesn’t notice their wary stares. I whispered for him to come back and stand beside me, but Aaron didn’t follow my whispering lead at all.

“Should I tell them they’re in the way?” he asked in his normal voice…..which is too loud. He also doesn’t notice my looks of frustration or embarrassment.

“No, Aaron,” I told him again in a whisper. “They’re not in the way. You are.”

But Aaron was already intent on listening to the mother as she requested the veggies for her sub. “She wants pickles!” Aaron told me, not in a whisper. “Who would want pickles?!” he continued.

How many ways can I tell him to hush, I wondered?

At this point, Aaron was getting a little frustrated at the wait. He saw another employee behind the counter, but this young man was working on a malfunctioning piece of equipment.

“Hello?” Aaron blurted out. So again I told Aaron to be quiet.

“I’m trying to get his attention,” Aaron explained, as I explained to him that this young man was not making subs right now.

Finally it was our turn. I had already figured out that Aaron wanted ham, but when I let him do the ordering, he just pointed to the meats and said, “I want that one.” Like this poor girl would know which one Aaron wanted? And he hadn’t even told her the bread choice yet. So with some patience from her, and from me, Aaron finally began his order correctly. She laid Aaron’s sub aside as she turned to take my order before beginning the veggies.

“Wait!” Aaron said. “I want tomatoes and….” he started to say, but I told him to wait. So he tried to be patient as I got Gary’s sub ordered, and then mine. Aaron watched the nice girl spread the Gouda cheese on mine, but he couldn’t resist giving his opinion.

“That looks like barf!” he told us. And I was glad that no one was behind us.

Aaron finally got to order his veggies, the way he always does.

“Can I have tomatoes?”

“Can I have lettuce?”

“Can I have onions?”

“Can I have cucumbers?”

And he told her that he wanted mayonnaise. Yay! He didn’t call it white mustard this time!

I finished the rest of our order. “I’ll take spinach, lettuce, tomatoes…..Aaron, don’t press the debit machine buttons……jalepenos, cucumbers……Aaron, don’t mess with the tea dispenser…….black olives, onions……Aaron, I said don’t press the debit machine buttons……and mayonnaise and a little oil.”

Aaron decided to whistle then…..a song we had just listened to on the radio. The girl guessed that he was whistling The Lion Sleeps Tonight, which made Aaron very happy and which reminded him that he should tell her about the movie he had been to see today with his day group.

“Have you seen San Andreas?!” he excitedly asked her. Except that Aaron pronounces the word “Andreas” the way he says his sister’s name, so it comes out as if he’s talking about San Andrea’s. Our server was confused, but Aaron wasn’t, so he launched right into as many movie details as he could manage while she finished wrapping our sandwiches. He bent over and rubbed his hands together, which only added to the comedy of this whole situation, as he breathlessly told of falling buildings and cracks in the earth and the lines on the earthquake machine going WAY up! I finally got him to quit talking when I told him that he shouldn’t tell her all about the movie before she saw it, and he laughed and agreed and somewhat calmed down as I paid for our subs…..finally.

We said goodbye and headed for the door. I thought we were nearly ready to escape as I pushed it open, and then realized that Aaron was not behind me. And there he was, bending over beside the trash can, picking something up off the floor. He sure can move fast for a big guy.

I could only imagine what it was that he was now putting in his hand, but as he stood I saw that it was only someone’s receipt. He had already turned and was headed back to the front when I stopped him.

“But I thought they wanted it,” he explained as I told him to throw it away. He reluctantly tossed the receipt in the trash, sorry that he couldn’t do a good deed. And probably especially sorry that he couldn’t once again talk to the nice girl who had already listened to far more than she had bargained for, I’m sure.

Whew! That was over! And I smiled as I thought of Aaron saying, “Hello?” to the young man behind the counter, and then explaining that he was just trying to get his attention.

Little does Aaron know that he doesn’t have to TRY to get anyone’s attention. It comes pretty natural, trust me!

Pipes and Pipe Parts

I never know when I hear Aaron burst through the door at the end of his day, as he arrives home from his day group, just what all I will hear or what I will see. He nearly always launches right in to some detail of his day that he just can’t wait to tell me about. Sometimes it’s a funny piece of information. Sometimes it’s about an event that excites Aaron. Sometimes it’s distressing and not so exciting or funny. Sometimes he frustrates me as he tells of something he has said or done that is inappropriate. We certainly never know what a day will hold with Aaron.

While I may not know what a day will hold, I do know that often Aaron will be holding something in his hands. Or he will be digging into his pocket for an item that he has found somewhere during his time away from home. I often question how he came upon these various items. Did he really find them? Did he take them when he shouldn’t? One thing for certain is that when Aaron spies something on the ground, especially, he will stuff it in his pocket in a flash. We have had him take lots of items back to Paradigm, his day group. Things we knew that had to belong to someone, or items that he had taken off of Barb’s desk, for instance. Post-it notes…….various cords that belong to devices…….notepads……….highlighters.

A few weeks ago, the day before Gary and I were leaving for a trip to see Andrea and Andrew in Houston, I heard the door slam when Aaron came home. He thumped loudly up the stairs. “Mom?” he loudly called. “Where are you?”

He found me cleaning his bathroom. As he walked in the bathroom door, he thrust a flower toward me and unceremoniously said, “Here!” I found myself holding an Iris……a very suspicious Iris…..as I wondered just where he picked it and how much trouble did he get into and who was mad at him for picking their flower.

I cautiously thanked him for the flower, and then asked him where he got it. “I tore it off the plant,” he casually answered.

Umm, yes Aaron, that’s pretty obvious. What plant?

So he told me that there were flowers growing at a house that Paradigm owns…..a residential setting where he often goes with Bryan to work on maintenance issues. And I realized that Bryan knew about Aaron tearing off the plant, and that Aaron didn’t rip it off of some flowers growing outside of a business or whatever, and that maybe it was sort of all right. And what could I do but put it in a glass of water while Aaron proudly watched? He was trying to tell me that he would miss me while I was gone to Houston, so he tore the Iris off the plant for me. It was a mixed blessing, I guess. One that he was quite proud to have accomplished.

He recently came home carrying this:

Thankfully he and Bryan had stopped at a yard sale, so this was a legitimate purchase. So he said….

And there was the eye ball. I have no idea who might be missing an eye ball.

He finds money. This, thankfully, was on our driveway so I didn’t have to worry about where he got it.

We’ve had some behavior issues with Aaron at his day group. It came to a head when I returned home from our trip to attend my mother’s funeral. No time is a good time to deal with these things, but to be forced to handle his emotional needs when mine were so raw was difficult. I made some changes in his transportation, for one thing, and he is much happier. He’s also much happier because of something we never dreamed.

Work. He’s been helping Bryan, one of the Paradigm staff, work on residential homes that Paradigm manages. Now this week they have been working on a new building that Paradigm bought. Aaron rushed in the house to find me the other day. He held his hand up to show me this:

“I worked in a place where there were pipes and pipe parts!!” he exclaimed. So of course he picked up some of the pipe parts, slipped them on his fingers, and couldn’t wait to rush home to show me. Then he showed Gary later, repeating the story with gusto.

“I like being with Bryan in that place where there are pipes!” he told us. Who would have thought?

The next day he happily held up his hands yet again.

More pipe parts!! “Bryan is working in that pipe place again!” he said. And there was more! I was thankful that Barb had talked to me on the phone before Aaron got home. She told me that Aaron would be bringing some money home, and that no, he had not stolen it! HaHa! She knew exactly what I would assume. Paradigm paid Aaron for the hard work he did that day.

After Aaron held up his fingers full of pipe parts, he dug in his pocket and pulled out some money. It was a $10 bill! He was so proud. He told Andrea all about it later on the phone. You would think he had made a thousand dollars. The effect was just the same, regardless of the money amount.

Pride. Aaron is proud of the work that he is doing, and proud to be helping in a tangible way. He is proud of the praise he is receiving. And like Andrea said, he feels like an adult who is doing real adult work. Again, who would have thought? But it does make sense, doesn’t it? Aaron has the same needs that we have. He needs to feel worthwhile and productive.

Plus he came home very dirty that day when his fingers were so full of pipe parts. His face and arms were dirty, as were his clothes. He actually agreed to take a shower at that time of day instead of waiting until the following morning. Wonders never cease!

Well, what made him seal the decision to take a shower in the late afternoon, totally out of his routine, was this comment that I made.

Aaron, if you shower now, you won’t have to shower in the morning.

Bingo!! His eyes lit up. “I won’t have to shower in the morning?” he asked in disbelief. No shower when he’s groggy. No shower when we’re in a hurry to leave. No shower when he’d rather drink his coffee and chill on his computer.

So far, so good. He has showered before supper for two whole days. He is delighted not to shower in the morning. He is very happy that his money he earned the hard way is safely tucked in an envelope, waiting for season four of Fallen Skies to be bought.

I never dreamed that our week which began with Barb and I meeting with Aaron, talking firmly about his options and his choices, would end on such a positive note. Oh, there will be bumps in the road. There will be ups and downs, as always.

But honest work and honest rewards are something that Aaron has responded to with genuine joy. I am very thankful for that!

Aaron has the same needs that we have. He just doesn’t verbalize them like we do.

But those fingers full of pipe parts and that smile on his face tells us all we need to know.

Along Came a Storm

Saturday was a day that Aaron had anticipated for a few weeks. That’s because Saturday was the day we were celebrating Rosa’s birthday by eating with her family at Chili’s. Aaron and Rosa are very special friends. They don’t see each other very often anymore since Rosa has a new day group and a new residential setting. These infrequent get-togethers are very nice for both of them, and usually very enjoyable for us parents.

I knew that Aaron was excited about going to the birthday dinner when at 10:15 Saturday morning, he asked what time we were leaving. I told him that we would leave at 4:45. He asked again a little after 1:00, and of course my answer was the same. He told me that it was going to be a long time before we left, but he hurried back up to his room and got busy once again. I was surprised that he didn’t ask about our leaving time again. I expected at least two or three more queries, but he didn’t ask further.

Aaron and Rosa were happy to see each other, in their own way. Rosa opened Aaron’s gift right away, and soon was holding some of the colored pencils he gave her in her hand. At one point, amidst the commotion, I just watched the two of them. Rosa talked and Aaron responded as he listened to every word she said. Aaron didn’t really look at her like you and I would, yet he was listening and answering.

After dinner, Aaron and Rosa wanted Rosa to ride in our van to her house. We had all planned to go to Rosa’s house for birthday cake, so off we went on a pretty drive through the country west of Wichita. Storm clouds had been building in that direction. They were beautiful to see as we looked out over the flat Kansas landscape. The clouds, the lightning, and our radar told us that soon we would have a good old Kansas thunderstorm.

Leroy and Louise’s house is an old family farmhouse, built in 1912. They have remodeled it, and it’s just so lovely and interesting. We thoroughly enjoyed walking around the yard, learning some of the history. Then it was fun to take the inside tour, seeing original elements of the house that are still intact and appreciating the updating that has been done. I loved seeing the various family pictures on the walls, a story waiting to be told for each one.

However, as we oohed and aahed and asked our questions, Aaron was becoming pretty perturbed. He had lost interest in the house, the history, the beautiful views from the large windows, and even Rosa’s room that he finally got to see. I was trying to enjoy this time with friends, but Aaron was demanding more of my silent attention……and then eventually my not so silent corrections as his attitude was becoming more evident. When Gary and Leroy came inside, Gary joined me in our attempts to keep Aaron on track.

It was time, then, to look at Rosa’s pretty cake. The candles looked like crayons, perfect for Rosa. She had jungle themed plates, cups, and napkins in bright colors. Those were also perfect for Rosa because she was adopted by Leroy and Louise from a jungle tribe in Brazil. Talk about a story!! Now there’s one for sure!

We sang Happy Birthday, and then Louise asked Aaron to help Rosa blow out her candles…..which he did, by blowing them all out except for one. Rosa didn’t seem to mind, thankfully. But Aaron still wasn’t happy. He was continuing to let us know that he was ready to go home. We knew that arguing with him wouldn’t help at all, but only make matters worse. He didn’t want to sing Happy Birthday (but then he really never does like doing that); he didn’t want to eat cake; he didn’t want to eat ice cream; he didn’t want to drink sparkling grape juice; and he didn’t want to sit and watch us do all those things. But we did sit and enjoy our cake and ice cream and sparkling juice…..with Aaron lamenting that he wanted to go home.

The storm was picking up outside and lightning was flashing, which only increased Aaron’s insistence that we go home. His agitation was increasing, too, just like the storm outside.

“Aaron, you’ve wanted to come to Rosa’s house for the longest time. Why are you acting this way? Why do you want to go home?” I asked.

“Because I want to watch the storm from MY room!” he answered.

I wasn’t at all surprised by his answer, though I was disappointed at how unhappy he was. He wasn’t out of control, but he wasn’t enjoying this time that he had said he wanted to someday have. Time to see Rosa’s house and Rosa’s room and Rosa’s life.

But a storm had intruded, and suddenly nothing else was interesting to Aaron. All of our talk was about a house and a history that surrounded this pretty house, while Aaron just wanted to see it all quickly and then go home where he could get back to his world and his house and his history……and enjoy the storm in his own room, where storms are meant to be enjoyed.

It seems selfish to us, but when you know autism you know that it’s really not selfish. It’s just rigid. It’s Aaron’s rigid way of living his life. Yes, Aaron’s life is mostly about Aaron, but those realities are beyond his control. He thought that he was using great control to stay as long as he did without a complete meltdown…..and I guess we should be thankful for that as well.

That evening to me was a perfect example of the saying about trying to fit a square peg in a round hole. Wanting Aaron to just get over it…..wanting him to enjoy the talk and the tour…..wanting him to really get excited about the birthday celebration with the cake and the decorations…..wanting him to enjoy the storm at Rosa’s house instead of in his room at his house…..well, it just wasn’t going to happen. We could hammer all day, but the square peg would NOT fit in the round hole. Nope. Not going to happen.

It’s embarrassing to Gary and me, but we do understand what makes amazing Aaron tick. A storm in any other place is just not right. He wanted his house, his room, his pajamas on, his way. I’m glad we did stay and we did make Aaron stay, stretching him beyond his comfort zone without devastating him. I’m glad that Leroy and Louise understand, and I hope that Rosa was happy with the evening. I do wonder what she was thinking, but she also knows Aaron well.

You know, if Aaron was blind I would never ask him to go walk down a busy sidewalk by himself, unassisted in any way. If he was in a wheelchair, I would never ask him to go up or down a set of stairs by himself. Aaron is confined, in a sense, by autism. He is confined to a way of functioning that cannot be overcome by mere encouragement. Just like I could not cheer him in a wheelchair into being able to conquer those stairs, I could not cheer him with my words or expectations into being able to function appropriately at Rosa’s house on Saturday night. He cannot just ignore his autism…..cannot stuff it into a corner of his brain for an evening and act like we want him to act. He does try, like he did at Rosa’s house, but it’s very difficult for him. We see progress sometimes, and other times not so much.

On the way back to our house on Saturday evening, the rain fell hard against the van. Aaron was sitting in the middle seat, visibly relaxing as we headed to our house. He went inside, talking happily, and quickly changed into his pajamas. Later, we had some conversation about the evening…..what was fun and what we were disappointed in concerning his behavior. Will he learn from it? We can only hope. We can only keep trying.

But most of all, we must keep understanding and we must try not to be too discouraged. We all have ups and downs. Aaron’s are just usually louder and involve the people around him, no matter who they are.

Maybe that’s why he likes storms so much. They’re definitely seen and heard, just like Aaron.

We were sure that Saturday would find us slipping that round peg in a round hole with no problem. We were sure that the evening would be an easy fit for Aaron. But along came a storm…..

Who would have thought?

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