One of Aaron’s Sunday routines is to clip the coupons that are almost always in the Sunday morning newspaper. I’ve blogged before about his coupon cutting process. Believe me, it’s just that……a process. A precise process that he is 100% convinced only he can do. I, especially, have no business cutting out coupons because I am a dismal failure at that task. Those are Aaron’s thoughts, not mine. Aaron cuts as closely on the dotted line as he possibly can. He then takes any little strips of paper that are left over and he clips them over a certain trash can, snipping each strip into tiny pieces and watching them fall down to join the other tiny pieces that fill the tiny snipped pieces trash can. It’s an art. Other odd sized pieces of left over coupon paper fill another trash can. The finished coupon sheets of paper, full of gaps where once were coupons, are placed neatly in a stack to Aaron’s left side. And the finished coupons are placed in precise order in the coupon box with the red lid. It truly is fascinating to watch him cut coupons.
Sometimes I don’t get the coupon box with the red lid emptied and sorted before the next round of coupons appear the following Sunday. Such was the case a few weeks ago. Aaron had completed his coupon cutting set-up in the family room. His three cups of coffee were waiting for him on the bench beside where he sits on the floor, along with his pillow that he sits on, his scissors, his two trash cans, and the television turned to The Animal Planet. He came to retrieve the coupon box with the red lid, opened it, and found last week’s coupons still inside. So without further ado, he promptly dumped the week old coupons onto the table and turned to walk into the family room and complete his coupon cutting mission.
“Wait,” I said. “Can’t you still keep the old coupons in the box?”
“No,” he simply answered.
“Because you can’t mix them up, right?” I asked, knowing full well the answer.
“Yeah,” he again simply answered as he sat on his pillow and started his mission.
Yeah is right. Aaron can’t stand to mix the old coupons with the new coupons. He does it on occasion, but not often. So he clipped that day’s coupons and later I found the coupon box with the red lid on the kitchen table…..every coupon placed in just the right place and in the right order. Aaron’s way, which to him is the only right way.
Aaron’s life, and living with Aaron, is so much like his coupon clipping process. He wants everything in its place…….the details of his life in a certain order. This goes here…..that goes there…..and if I’m done with it or it’s old or messed up, out of place or frustrating, I just dump it and we start over. Neat and tidy, with Aaron in control of the set-up and the tools and the timing and the process. Except life’s not like that, not for Aaron and not for any of us. You and I can adapt to these changes for the most part pretty easily, but not so Aaron. Even the simplest change, the most minute little snag in an otherwise orderly process, can easily put Aaron over the edge.
Gary and I just returned from a short trip to Topeka, where we watched Andrew work on his NHRA race team. Aaron knew that his two caregivers were coming to take care of him. He was excited for us to leave, as he always is, because our leaving means more eating out and more movies and hopefully less bossiness from those in charge and more of him pulling the wool over unsuspecting eyes…..so he hopes.
“I can’t wait for you to leave!” he said on Thursday as I was getting ready to go. “NO parents!!” he added as he rubbed his hands together and laughed loudly. He is at least very honest.
“What time are you leaving?” he asked, though he had been told how many times before?
“We’re leaving at 3:00,” I answered.
“Can’t you leave early?” he asked. “Like 2:59?”
He was completely serious about that. So I smiled when I hugged him goodbye later, and told him that it was 2:52. He just nodded his head and went on his way, and I stifled my laughter until Gary and I drove down the road.
Aaron calls repeatedly while Gary and I are away from home. Every day, several times a day, he calls. So much for his “NO parents!” comment! Therefore, it was no surprise on Monday morning when he called, and also no surprise to me that he was most unhappy. After his busy weekend, and after NO parents, he was ready to settle into his normal……but not ready to go to his day group. He wanted to stay at home, which is common for him, and he wanted to be there when we arrived. I always question what to do in that case. Let him just stay home…..but is that giving in? Make him go…..and maybe pay the consequences of that decision. Mainly, his caregiver and day group have to pay the price of Aaron’s grouchiness.
As Aaron and I talked on the phone and he finally agreed, unhappily, to go to Paradigm, he asked me if I would pick him up early at the end of the day. I said that I would.
“Mom!” he said. “I mean to pick me up before 4:00. I want you to pick me up at 3:59!”
Again, he was entirely serious. “3:59?” I asked him.
“Yes!” he answered. “Don’t wait until 4:00! Will you pick me up at 3:59?”
So I agreed to pick him up at 3:59 and he went reluctantly to Paradigm. However, he had a miserable day. The other clients had a miserable day. The staff had a miserable day. Thankfully they are so understanding and forgiving.
It was around 1:30 when my phone rang. I heard Aaron on the other end, voice thick with tears. I’ve lived this scene so many times that I didn’t even need to hear what Aaron had to say.
“Mom,” he started……and I just told him that I was coming to get him.
“No!” he said strongly. “I want you to come at 3:59!!”
“But Aaron,” I countered. “You’re very upset now so let me come and pick you up.”
“No!!” he forcefully repeated. “I want you to come at 3:59!!”
He handed the phone to Barb, and she said that he was very firm about me coming at 3:59, but then for some reason he changed his mind and said that I could come on to get him.
A short time later, he and I sat in Freddy’s. I figured a Freddy’s burger and fries would be the best medicine for him. He was relaxed and very happy as he ate his burger, but his eyes were still red and bleary from all the tears. As I asked him why he was so upset that day, he couldn’t tell me why. I kind of know why, but he really has a very hard time verbalizing outwardly what goes on inwardly in his mind and emotions.
So many diseases or syndromes show up in a person’s bloodwork when it’s tested, but what Aaron is missing doesn’t show up firmly in lab work or on a piece of paper. The connections in our brains that allow us to process and filter our environment, and our responses to life’s occurrences in our environment, are missing in Aaron’s brain. He cannot just simply deal with issues like I can. So he reacts, often in great frustration, and getting to the root of that frustration and his reaction to it is what we continually try to do.
However, we are often very frustrated ourselves……frustrated by Aaron’s behaviors and his reactions and all that goes along with it……that it’s hard to pause, take a breath, and try to figure it out ourselves before we can even begin to help Aaron figure it out. Add to that our embarrassment at times……our tiredness…….our feelings of failure or ineptness…..and it’s like my box of coupons.
I just want to dump the whole thing and start over!!
Start over with an empty box……new coupons…..all in precise order!
But life’s not like my coupon box with the red lid. I can’t just dump days or events out on the table, and arrange the new day the way I want. And neither can Aaron.
But we can start each day with a clean slate, and try again. We can build on the old experiences and the lessons they taught us. Clipping here……cutting there…..arranging our thoughts and our responses in the right way. We do it through prayer, through seeking God’s wisdom, and through loving each other through not only the good, but also the bad and the ugly. And we have plenty of those last two, believe me.
And through always keeping in mind that Aaron’s most impacting special need is the one we can’t see in that amazing brain of his. We don’t understand how he thinks at times, or how he acts, but we do understand that he really wants to do better and that the frustrations for him are far greater than any that we as his parents and caregivers will ever feel.
There’s one more thing about starting each day anew. God has promised that His mercies are new every morning. They’re not based on yesterday and on yesterday’s failures. His mercies are new and fresh every morning, as is His longsuffering and forgiveness and kindness.
Can I be any less for Aaron?
I don’t think so. And I can put that promise on the very top of my daily coupon box.