Special Needs Adults – Page 17

Ever Long

Patience is a virtue, so someone said, but I can tell you that it is not a virtue that Aaron typically possesses.

On an average weekday morning, when Aaron is waking up to the smell of his coffee that I bring to his room, he is also waking up to the reality that he will soon be going to his day group, Paradigm. Hope springs eternal, though, that he can stay home. It’s not that he doesn’t like Paradigm. It’s just that he likes being home more.

I fully expect each morning to be the same and am surprised if it isn’t.

Mom, I have a headache.

Mom, my stomach hurts.

Mom, I didn’t sleep much.

Mom, mom, mom…followed by various stay-at-home excuses.

I leave him to his coffee and his conniving as I go about my own getting-ready morning routine…a routine that Aaron knows all too well.

Eventually, almost always, Aaron comes around and decides on his own to go to Paradigm. The problem is that when Aaron decides to go, he wants to go now.

Like, NOW now.

If Aaron walks into the bathroom while I’m drying my hair, he knows that after drying of the hair comes fixing of the hair.

After fixing of the hair, comes applying of the make-up.

Applying of the make-up may be short…meaning only a dusting of powder and a swipe of blush…and mom is good to go.

But sometimes, after the powder dusting and blush swiping, Mom moves to the dreaded eye make-up.

Eye make-up takes way too long in Aaron’s book on a morning when he has resigned himself to his Paradigm fate. He wants eye make-up to go away…to not be applied. He knows that if Mom moves to her desk in the other bedroom, where she seems to like that light from the window, then her eye make-up is really going to happen.

And now is not NOW!!

NOW must wait.

Waiting requires patience…that virtue that Aaron rarely possesses.

One recent morning, as Aaron hovered behind me in my bathroom watching me in phase one of my getting-ready routine…drying of the hair…he decided to broach the dreaded subject of my make-up amount.

“Mom,” he began, “so when you DO put on make-up, are you going to do it ever long?!”

He sounded positively Shakespearean!! 🙂

On many mornings, however, his impatience with my make-up routine can make him very angry. It’s not that he has a thing against make-up. It’s that he has a thing against waiting.

Just like I often begin my days with Aaron’s lack of patience, I also often end my days with that same impatience brewing in Aaron’s mind. This time his testy attitude surrounds the fact that he knows we will watch a show just before bed. We are working our way now through the series “Dr. Quinn: Medicine Woman.”

Last night, being New Year’s Eve, Aaron thought a great way to celebrate would be to watch TWO episodes. He came downstairs at 7:30 to find that I was watching an end-of-year special that I had no idea I would watch and that I had not run by him for his approval.

This was not good. Not good for me or for Aaron.

He let me know that he wanted to watch Dr. Quinn now.

Like, NOW now.

I told him no.

I told him that we would watch Dr. Quinn at 8:00.

Waiting for 8:00 was ever long for Aaron. And he let me know, as he went up the stairs to his room and down the stairs to the family room…over and over and over…that 8:00 was unacceptable.

I stuck to my guns, but not without facing Aaron’s wrath.

In fact, I finally marched to my bedroom…got my purse…put on my coat…and told Gary that I was going out for a drive, in order to clear my head.

Aaron just watched, not saying a word. I do believe he was scared. While I was gone, he stayed in Gary’s study. Gary was a captive audience with his leg all bandaged and propped up from his recent foot surgery.

I talked to God while I drove. I told him that I feel a little blank anymore, wondering what He wants to show me or teach me in this life I live. I told God that I want to be patient with Aaron, and that when I’m not, I don’t want to sin in my impatience and anger.

That’s the tough part…not sinning when I am also the one not exercising that virtue of patience.

While I was out driving, I saw a section of beautiful lights still on full display in a neighborhood. I went home, got Aaron, and together we drove through the pretty lights.

No lecture. No mention of his anger.

Just enjoying the bright beauty around us.

It was calming to us both.

And it was surprising to Aaron, I could tell.

Surprising to him that I wanted to simply show him something pretty…something that he loves…when he had just been so mean to me.

Aaron needs to learn to wait. It’s hard on both of us as I continue to try to teach him that virtue.

I read this morning some of my old notes from my Genesis Bible study I recently completed. In talking about how Abraham had to wait on God to give him a son, Joyce Baldwin said this:

“God’s delays are not God’s denials.”

A delay doesn’t mean no.

To prove His promise to Abraham of a son to come, God had Abraham look up into the heavens. God told Abraham to count the stars…the bright shining stars. He told Abraham that so would be his descendants, innumerable like the stars up above.

But the promise wouldn’t happen now.

Like NOW, now.

But Abraham, while watching others have sons and grandsons, had to wait on God to fulfill His promise in a most unlikely way and time.

Abraham had to believe God…had to trust God…and it was counted to him as righteousness.

God did fulfill His promise to Abraham, in His own time. Not in Abraham’s preferred time.

And this is where and how Abraham grew in his faith. As Baldwin says, “Faith rests on the fact that God is faithful, and when we take God at His word, we prove for ourselves His faithfulness.”

Aaron needs to learn to trust me and to be patient when he must wait on something.

I need to learn to trust God and to be patient when I must wait on Him as well.

Waiting on Him to show me what I need to learn…to give me grace for life with Aaron…to not compare myself to others…and a myriad of other reasons and ways that I must wait on God.

Bright lights calmed me and Aaron.

Bright stars calmed and settled Abraham in his faith.

Because God is faithful, I can have faith. Faith in God even during the hard times.

Faith to wait, even when fast answers don’t come.

Aaron and I did watch two Dr. Quinn episodes. It took ever long, but we did.

I kept my promise…and so does God.

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I Love This Place!

For the past few weeks I’ve felt like I live in a snow globe. I’m a figure that’s not fastened down, so when the globe is shaken I just fly all around with the snow. Crazy, to say the least!

Gary and I knew that this was going to happen:

Thankfully his foot surgery was planned and on our calendars many weeks ago. We had time to prepare, even throwing in some minor things like having two bedrooms remodeled. You know how that is. Emptying the rooms of everything; deciding on what supplies to purchase; purchasing supplies; going through drawers and shelves and making multiple donation trips to Goodwill; the remodel itself (great job, Distinctive Designs!!); cleaning; putting everything back in the rooms; and heavy furniture up the stairs or down the stairs (thank you to our son, Andrew, home for Thanksgiving!).

Then there was decorating and preparing for Christmas with all the shopping and wrapping and mailing and cards and cooking yet to do.

Oh, and let’s throw in cleaning our big storage room two days before surgery! Why not??!!

In the midst of it all, there is Aaron. Aaron…trying so hard to maintain his normal.

Aaron’s normal is very vital to him. His normal is as vital to him as breathing or eating. Normal gives him stability and predictability, which he needs to maintain his balance.

Gary and I can roll with the flow, stressful as that flow may sometimes be. Aaron…not so much. When his normal flow of life is redirected…shaken like the snow globe…Aaron most often will react instead of handling the change. Then whatever is causing his life change, as he sees it, becomes the enemy.

The enemy may be an event. That’s why holidays, parties, trips, or other out-of-the-norm happenings can rock his world. Aaron’s world is what he makes it. His world is set and settled in his brain, everything in its place. His days flow with an established pattern. Can we all spell “ROUTINE?!”

The enemy may also be a person. Any person who disrupts his pattern of life or his way of doing life becomes a huge problem to him. Just ask his siblings about our Christmas family time every year. We all know to expect at least one “Christmas Meltdown” every year. The meltdown often involves some aspect of our family Christmas Eve Bingo game, which combines a party atmosphere with a lot of crazy thrown in from the annoying people who are on his turf and messing up his routine.

Autism at it’s finest, let me tell you!

When Gary and I arrived home the day of his surgery, Aaron was so very happy to see us. I saw him scan over Gary’s huge wrapping with his ever-observant eyes, but Aaron never asked how the surgery went or how Gary was feeling.

Instead, Aaron talked up a storm as we got Gary settled in bed. He ran up to his bedroom, returning with a soft blanket of his that he wanted Gary to use. He ran outside in the dark and brought in our trashcans that were at the end of the driveway. He kept looking for ways to help and was just SO happy to have us home. I’m not sure how much of that happiness rested on the fact that his dad was all right or on the fact that we were home, at last, and now life could be back to normal.

Normal! Right?!

Wrong.

Dad was in the guest bedroom. Mom had to make trips down to Dillon’s for meds and food that sounded good to Dad and drinks to settle his stomach. Dad wasn’t talking much and Mom was distracted. People were calling. Or coming to the house.

The morning after surgery, Aaron was getting edgy. We knew it. And Gary, bless his heart…in the shape he was in…managed to ask Aaron about his game he was playing. Aaron was off and running then! Talk, talk, talk!! Talk about what he loved and what he understood and what mattered to him.

Honestly, Dad’s foot and leg all propped up on the living room couch didn’t matter to Aaron at that point. How Dad slept didn’t matter. Dad’s possible pain didn’t matter.

It seems heartless to us, but we know Aaron. We know how autism is often defined by a narcissistic way of viewing the world.

We had some storms that first week. It got rough. My reactions weren’t always kind and loving toward Aaron.

Then after the snow would settle in our upside-down snow globe world, Aaron would look at us and immediately launch into talk of aliens and outer space and his latest movie and anything…ANYTHING…but real life and feelings and concern for us. Then his anger would erupt if he sensed our lack of interest in what he was saying.

Just so exhausting.

One night after going around and around, Aaron regrouped quickly and stood by Gary in the living room talking about what show he was watching or game he was playing. This was Aaron’s happy place with his captive audience.

This past week, our second week post-surgery, Aaron came down with the crud bug. Fever, cough, sore throat, aching all over. A doctor visit, some meds, and he is better. But again, a sick Aaron was a touchy Aaron.

Until he thought of Christmas lights.

“Mom?” he asked on evening. “Can we go look at the lights on the big white house?”

It wasn’t necessarily what I had time or interest in at that moment, but I saw the hope on his face and so off we went. We saw the lights and then drove on to look at some other lights close by in several neighborhoods.

A couple nights later, after our neighbor mentioned a near neighborhood that was all decked out in lights, Aaron and I went out again. House after house was glowing and flashing and bright and fun. Aaron was mesmerized, leaning forward in his seat and very still, with a smile on his face.

“I LOVE this place!!” he finally exclaimed.

It warmed my heart so much for him to express such joy.

It warmed my heart to be the one who showed him this place he loved.

I’ll admit that sometimes I don’t love this place where God has us. Life with Aaron can be very tiring. He requires or demands things from us that we at times have no energy or interest in giving.

This place isn’t always bright and pretty and rewarding and fun. Sometimes we wonder why we’re here and what we’re doing.

But this place is where God has put us.

Aaron is God’s gift to us.

Sometimes we don’t feel that sentiment. Gary and I get weary…lonely…at the end of ourselves.

I’m sure the man Jesus…God’s Son…felt all that and more, thousands of times over, as He walked this sad earth.

And because Jesus walked with us, He also understands our weaknesses and our human thoughts. He is here with us to give us His grace and enable us to do the same with Aaron.

Aaron may not always love this place, either. When his life is askew and he is miserable, loving this place is the last thing on his mind.

But may he know, when the snow is settled and the storm is over, that HE is loved.

Loved by God, as are we…and loved by his parents.

May this place, where we are at the moment, be a place of love when all is said and done.

And may your place, dear one…hard as it may be…be a place filled with God’s love for you and through you.

Bright like the lights of this beautiful season!

In the Crosswalk

What is it with Aaron and crosswalks??!!

I was asking myself this question yet again yesterday as Aaron and I exited Wal-Mart.

I could also ask the question, “What is it with Aaron and Wal-Mart??!!”

Oh, the stories!

As we got out of the van yesterday, while we were still rather obscurely hidden in the parking lot, I reminded Aaron to pull up his jeans. He did that while tucking in his shirt, but for some reason yesterday his shirt tucking had a rather dramatic and unsettling beginning. It involved Aaron fully sticking his arm down the FRONT of his pants, getting his shirt settled down there, and then working his way around the remaining waistband.

I told you it was unsettling.

“Aaron, good grief, you don’t need to make such a production of tucking your shirt in,” I instructed him as we walked through the store and he decided that his jeans and shirt needed repositioning several times.

Several times in the same manner mentioned above.

When will I ever learn to quit walking ahead of Aaron in Wal-Mart?

You would think after the nightie story and the falling cereal display story and the singing story…that I would know better.

I was in full “ hurry-to-the-van-while-mentally-checking-off-my-to-do-list-and-plan-my-next-stop-for-that-one-missing-item” mode as Aaron and I exited Wal-Mart. Which means I wasn’t paying attention to lagging Aaron.

Instinct kicked in, I guess, because I turned around IN the crosswalk, with cars and staring drivers on either side of us, just in time to see Aaron pulling up his jeans and tucking in his shirt.

And doing it in that same disturbing manner!!!

IN THE MIDDLE OF THE CROSSWALK!!!!!

“AARON!!!” I calmly insisted, “STOP IT!!”

I said this while continuing to walk as if nothing was amiss at all.

Aaron knew then that he had erred, so he scurried up beside me as we left the embarrassing crosswalk.

“Well, I had to pull my pants up!” Aaron explained.

“In the middle of the crosswalk?!” I asked.

“What’s wrong with that?” Aaron questioned.

I just took a deep breath, reminded myself not to shame Aaron, and proceeded to once again remind him of how some things are best done in a less public setting.

Trust me, many of Aaron’s actions are best done in a MUCH less public setting!!

But Aaron truly doesn’t have a concept of social norms like you and I do. No amount of proper parenting, wise advice, careful instruction, and repeated modeling of acceptable behaviors has…or ever will…change him.

I mean, he does show some improvements in some areas. He hasn’t made his loud farting noise with his mouth in the middle of Wal-Mart in some time, come to think of it.

He can be so funny, but he can also be so exhausting. The exhaustion is mostly mental for me and Gary with some emotional thrown in as well.

A big part of it is Aaron’s talking. He loves to follow us around the house, sometimes a LOT, and talk…always a LOT!!

Our son, Andrew, drove home from Indianapolis for Thanksgiving. Aaron had fresh ears to listen to all his talking, but he also had competition. The competition comes into play for Aaron because now he must share our attention. He is not the only person in the house, and he must share his podium with his brother.

This is difficult for Aaron, try as he might to be patient. Another issue is the topic of our conversations. Aaron’s topics are typically about aliens, Star Wars or Transformers or Terminators or whatever else he is watching, relational issues at his day group, and more about aliens and outer space and droids and what-do-we-think about aliens and outer space and droids, etc., etc., etc.

All of us are like the drivers in the crosswalk, where Aaron has the right-of-way and we must wait for him to cross. No amount of confirmation from us toward Aaron can change the fact that his mind-numbing conversations dull our responses to him…and he senses this.

He also truly wants to be the ONLY one talking, and this is where we must step in and remind him to take his turn. This creates anger on his part and resentment toward the person who has pushed him off his podium, albeit unwittingly, but done none-the-less. We all understand this about Aaron, and even expect it, but still it’s tiring.

On the day before Thanksgiving, Gary got home early from work so we along with Andrew picked Aaron up from his day group and went out to eat in Old Town. Aaron had a seizure early that morning, and another one about an hour before we picked him up, but it didn’t dull his tongue. Not one bit. 😊

But my favorite picture of our Thanksgiving was when Aaron waddled into the kitchen wearing his shark blanket – a gift from Andrea and Kyle for his birthday – and proceeded to continue talking. It was just hilarious to see him standing there, oblivious to how he looked, and still talking up a storm.

Again, we were trapped in the crosswalk…all of us with hidden smiles on our faces…and Aaron unaware of how comical he looked.

Living with Aaron isn’t always easy, especially when we’re already stressed about other life events and concerns. Having to stop on a busy day for people in the crosswalk isn’t always fun, either. So, when we’re rushing to get ready for the holidays in the midst of having some remodeling done, with lots of furniture to move around and mess to clean up – thanks for your awesome help, Andrew!! – and Gary is having foot surgery on Monday and will be incapacitated for a long time in a house full of stairs!! – and there’s decorating and shopping and surgery prep and just LIFE!!…

Those crosswalks can be very, very irritating and draining.

It helps to be able to smile and sometimes laugh and to think of Aaron in his shark outfit, not to be derailed from talking!

The pulling up his pants thing, though. Some things are best forgotten.

My apologies to all the drivers at that crosswalk.

It was memorable, I’m sure. 😊 😊

Aaron usually is.

Joy and Crescent Rolls

My phone rang yesterday while I was working in the kitchen. Of course, it was Aaron making one of his several calls from his day group…calls in which he updates me on his doings, reports good times or bad times with friends there, asks me when I’m coming to pick him up, and stresses that he wants me to come EARLY!!

Since this day was Friday, and since Friday is the day we usually have a special meal of Aaron’s choosing, this phone call greatly concerned food. He also wanted to know if we were going on our Friday Wal-Mart trip to buy him his “end-of-week and beginning-of-weekend” snacks.

“MOM!!” he began. “Are we going to Wal-Mart after you pick me up?!”

I assured him that we were.

“MOM!!” he continued. “Can I get some Pillsbury Crescent Rolls to have for our supper?”

I assured him that we could.

“MOM!!” he added. “Not the kind in the box but the kind that you bake in the oven. Pillsbury Crescent Rolls!”

I assured him I understood.

And then he chuckled…his deep-throated chuckle of pure delight.

Pillsbury Crescent Rolls filled him with the greatest joy at that moment, a contagious joy that was passed on to me as I joined him with a laugh of my own.

One thing about Aaron that continues to teach me so much about handling life is his joy in the simplest of things…things that I often take for granted.

I typically don’t play Christmas music until after Thanksgiving, but for the past few years I have caved somewhat on that standard. Two days ago, while cooking supper, I turned Pandora to a Christmas station. Music has always, from my childhood, been a huge part of my life. I listened as I prepared our meal, waiting for that illusive “Christmas spirit” to wash over me.

Instead, though, I was soon brushing away tears. Silent Night was playing, and that song above all Christmas songs, reminds me of times past and of my parents and of how I miss them and of so many other memories. Sweet memories, but memories now…people and events of the past, not the present.

And the present…the now…is where I wish they still were.

This Thanksgiving and Christmas season, above all other seasons…with its music and traditions and memories…is so very full of emotion and expectations.

Expectations that often don’t materialize and so leave us with sadness.

In November of 2004, my parents called with the unexpected news that dad’s cancer was no longer in remission. Doctors had found inoperable cancer in his liver. All our close family was devastated at this news. Gary and I decided to quickly change our Christmas plans that year. We loaded up our van the next month just before Christmas and traveled the long distance home to West Virginia. All of us wondered if this would be Dad’s last Christmas.

This long, sad trip was very hard for Aaron in all the ways that change and travel have always been hard for Aaron. The most stressful aspect for Aaron, though…for all of us…was the raw emotion that we couldn’t hide. Aaron doesn’t like crying and on this visit we couldn’t successfully hide all our tears from him. The early morning that we left Mom and Dad’s to return to Kansas, we all stood in a circle as we held hands and prayed. And we all cried.

Except for Aaron, who sat off to the side rocking in a recliner and saying over and over, “Crybabies!! Crybabies!! Crybabies!!”

To borrow an Aaron phrase, it was half sad and half funny!

Yet a very sweet moment with Aaron happened during that trip. As Mom and Dad opened their Christmas presents, they unwrapped a framed poem of sorts that someone had given them. Aaron saw it and he held it carefully as he began to read. We all sat still and listened to him read every word in his monotone voice. It was good that he was looking down and didn’t see my parent’s tears, and ours as well.

I have this precious piece now and was looking at it the other day as I did some sorting. I thought of it as I listened to Silent Night and my heart filled with emotions about what used to be and what isn’t now.

I know that I have a choice to make. I also know what God has told me to do.

“Give thanks in all circumstances, for this is the will of God in Christ Jesus for you.” (I Thessalonians 5:18)

As the poem said, happiness is all around us. I like to substitute the more meaningful word “joy” for happiness, for joy is a fruit of the Spirit in my life and is possible no matter my circumstances. But whichever word you use, know truly that there is joy and happiness all around us, every day, in sometimes the smallest of ways. Yet small things are huge when we look at them through the lens of thankfulness.

Over the years, life changes…a lot…but joy with a thankful heart should be a constant for us.

Aaron has seizures, but we are thankful for good doctors:

Thankful for yummy and very cheesy chicken enchiladas:

Thankful for God’s amazing creatures in our own yard:

And thankful for Pillsbury Crescent Rolls!

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Hey, It’s My Birthday!!

We just finished celebrating Aaron’s 35^th birthday. We had three days of birthday events, full of fun and loaded with Aaron’s exuberance. There aren’t many 35 year old’s who would embrace their birthday with as much joy and pure excitement as Aaron did. His birthday is one of those times that we fully see how unencumbered Aaron is with adult responsibilities and burdens. 35 doesn’t seem old or worrisome to him at all. He’s all about HIS day and all the fun it holds! He’s very much like a kid, and everyone around him smiles at his delight.

Aaron begins planning his birthday months before the actual date. I’m not exaggerating. He talks and talks about his plans. Can we go here? Can we do that? And often, he doesn’t ask us before he starts inviting people to come to our house or to eat out. It’s easy to be exhausted long before the birthday celebration even occurs as we try to keep up with him and his grand plans.

His birthday was this past Friday. On Thursday, he stayed home from his day group. He helped me make lots of cupcakes for his day group to share the next day.

We also made lasagna for some of his friends to have on Thursday night. We loaded up the van with lasagna, garlic bread, cupcakes and drinks before driving across town to the residential home of some of his day group friends. All girls, by the way! 😊

On Friday, Aaron carried his cupcakes into his day group…chocolate cupcakes with chocolate icing and sprinkles, per Aaron’s wishes. At the end of his day, Barb…dear friend, second mom, and Paradigm manager…brought Aaron to meet Gary and me at Texas Roadhouse for his birthday “eating out” supper – Aaron’s choice once again, of course!

Oh my goodness, his excitement was almost palpable! He could hardly stop laughing and talking, and rubbing his hands together, in complete happiness.

“It’s my birthday today!!” he immediately told our server. “Can you sing to me?!”

Our sweet server laughed as well and said of course. She mentioned the saddle, which we had to explain to Aaron, and which he agreed to our surprise to do…but later he backed out on that saddle business. He wanted the largest sirloin, but we insisted on the next size down. He barely quit talking and eating. He was large and loud and very, very happy!

His gift bags from Barb, and from Casady – Barb’s daughter and another very good friend – were perfect for Aaron because they know him so well. And they love him, which he fully knows.

At home later, he opened more gifts and he talked to family…and he loved the shark cuddle blanket from Andrea and Kyle!

Then on Sunday evening, we met his special friend Rosa for their traditional birthday dinner at Chili’s. Again, Aaron announced his birthday to our server and asked if they would sing to him and bring him ice cream with chocolate syrup. Look at Aaron’s happy face when after dinner several of the staff sang and clapped and made Aaron’s final birthday celebration complete.

Rosa ran to their car as we left, bringing out her doll head that she loves so much, while Louise and I laughed and laughed. We love Aaron and Rosa’s friendship!

My heart was warmed later when Louise told me about how she and Rosa were looking at calendars to buy for Aaron. Aaron loves animal calendars, so Rosa eyed each of the three that Louise showed her. Rosa instantly chose the buddy calendar that shows dog and cat buddies for each month. Isn’t that so sweet?

I’m very thankful for each of Aaron’s friends and family that love him. Every text, Facebook message, phone call, and gift to Aaron was also a very deep gift to me, as well. I loved seeing Aaron so happy, and I love seeing Aaron BE loved by so many precious people in his life.

Sometimes it’s easy to feel alone when you raise a child with special needs, especially when they are fully adults yet, as in Aaron’s case, still so fully dependent on the help he needs from the family and staff that surround him.

Easy to look at others who are Aaron’s age, or much younger, who are finishing school and getting jobs and raising a family.

Those thoughts for me are fleeting, though, because I know the danger they carry. Aaron is Aaron, created by God, and my responsibility is to love and care for him – not to regret that he isn’t someone else.

Barb’s daughter, Casady, a kind soul who loves Aaron to pieces, wrote this in Aaron’s card:

“Happy birthday, buddy! Thanks for making me see all the sides of life. Love you so much.”

Those words seem to just go over Aaron’s head, but not mine. Her words go straight to my heart and come out from my eyes in tears that I don’t let Aaron see…or he would call me a crybaby.

But oh, life really is so much more than our routine and our version of “normal.” Trust me, Aaron shows us sides of life that we never even thought of! And other sides that we would like to forget!

Yet Aaron also shows us how much fun it is to relish routine and special days and music and warm blankets and coffee and cows and horses and bugs and steak and movies and shopping and dogs and cats and milkshakes and sharing and pennies he finds on the ground.

I sometimes stop and look at Aaron when he’s doing an Aaron thing, and my heart swells ‘til it almost hurts. He is so unique, complicated, hilarious, maddening, and upsetting. All the sides of Aaron are also the sides that all of us have, but Aaron doesn’t often have the ability to hide them like we can. They’re out there for all to see…and to hear!

And this morning, I heard a seizure a little after 5:00, and another just before 8:00. Then one that he’s only had once before, back in April – long and strange and scary. This is the side of Aaron’s life I dislike the most, but it’s a side we must handle and manage as best we can. I handle it by being thankful in the many ways that God brings to my mind, and by knowing as well that God is there for us and for Aaron with His sovereign protection and grace.

The sides of Aaron’s life…the good, the bad, and the sad…are all wrapped up like a birthday gift that God gave to us the day that Aaron was born. It’s up to us to relish all of who Aaron is, even the hard sides of Aaron; to thank God for our special gift; and to care for him in all the ways he needs.

Every side of Aaron…every day.

Hey, it was Aaron’s birthday!!

And I’m happy about that!!

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Did Someone Say, “Time CHANGE?!”

I am 99.9% certain that whoever thought up all this time change business did not have a child living with them who had autism. Specifically, a child with autism who has as one of their obsessions the desire for living life with precision timing.

Such is our Aaron.

Aaron wears a watch every day of his life. If his watch breaks, time for him stands still…and time for us is nearly unbearable until the broken watch can be replaced. Trust me, we take as little time as possible in finding him a new watch. It must be a specific watch, one with numbers all around…a second hand…and the day and date feature.

Heaven help us when the day and date feature needs to be adjusted! Aaron doesn’t have time to wait for that, either, and when I mess it up…which I so often do…then the world is off balance for Aaron until Dad is able to come to the rescue.

Many of you have heard lots of stories about Aaron’s precision with time. For instance, on the weekends Aaron wants to eat lunch at 12:00 noon. This often happens:

Me: Aaron, do you want to eat lunch?

Aaron: Yes.

Me: What do you want to eat?

Aaron: Can I have pizza?

Me: Sure. I’ll fix it now.

Aaron: I want to eat at 12:00.

Me: Well, it’s almost 12:00.

Aaron (pushing his sleeve up to look at his watch which is worn halfway up his arm): No, Mom! It’s 11:56!!

I sigh, exercising my lungs as I so often do with Aaron, and make sure we wait until 12:00 on the dot to start the lunch process.

Here’s another familiar scene:

Aaron: Mom, I woke up at 7:58.

Me: So, you woke up around 8:00?

Aaron (looking at me as if I had three eyes but no brain): No! I woke up at 7:58!

I began preparing Aaron for the dreaded time change on Saturday afternoon. When we finished watching our DVD before bed, he glanced up at the clock in the family room.

“Mom,” he began. “It’s 10:47, but it’s really 9:47, right?”

I assured him he was correct as he followed me into the kitchen. He carefully watched me change the stove clock, the microwave clock, and the coffee pot clock. Things were progressing smoothly.

Little did I know.

The bedtime routine was moving along normally when Aaron sat on his bed to write the time in his logbook. This logbook in which Aaron records…precisely records…his time to bed and his time to get up. Every. Single. Day.

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Aaron stared at his complex weather station clock beside his bed…the one that needs a person with an engineering AND rocket science degree to change the time.

“MOM!!!! My clock says 11:02, but it should say 10:02!!!”

WHY DIDN’T I REMEMBER AARON’S CLOCK?????!!!!!

But outwardly I was the picture of calmness. I told Aaron that I really thought it would set automatically by satellite. Aaron sat on his bed with his logbook open, very still, staring at the clock as if he could will it to change. I stood beside the bed, staring at Aaron as if I could will him to change.

Silly Mom.

He scooted off the bed and headed for the door.

“I’m getting Dad!” he informed me as he left his room.

Thump, thump, thump down one set of stairs.

Thump, thump, thump down the second set of stairs.

Soon I heard Aaron pounding up both sets of stairs. Seriously, he takes stairs like a bull elephant.

And there followed Gary, much slower than Aaron, who was full of purpose.

“Dad, can you set my clock?!” he asked anxiously.

Gary set the clock, Aaron sat once again on his bed with his logbook open, and I stood there waiting hopefully for the time to be entered, precisely.

Aaron stared at his weather station clock. Then he pushed his sleeve up and looked at his watch. He stared again at the blue numbers on his very difficult weather station clock.

“MOM!!!! It says 12:10!!!! It should be 10:10!!!!!”

Oh. My. Word.

Dear Gary, in his tiredness, had set the clock AHEAD an hour. Instead of falling back, we had gone full speed AHEAD…and Aaron was full speed DONE with this crazy time change!!

SO WAS I!!!!!!!!

“Aaron,” I kindly said (despite how UNKIND I felt), “can’t you just lay down, close your eyes, and go to sleep?”

It would have made more sense to tell him to climb Mt. Kilimanjaro…barefoot…in the dark…with no guides…and no supplies.

I wonder what time it was in Tanzania?

Aaron informed me that he could do none of those things. Lay down, close his eyes, or go to sleep.

“Aaron,” I continued (my lips drawn tighter than they had been), “can’t you just wear your watch to bed?”

With that, Aaron once again pushed his sleeve way up his arm and stared down at his watch.

“MOM!!!!” he said, “we need to change the time on my watch!!!”

AAAAAAHHHHHHHHH!!!!!!!!!!!!!

Anyway, I prohibited Aaron from going back to get Gary. I changed the dumb time on his watch. I then sat down on his bed, praying as I started pushing buttons, and somehow someway I was able to change the stupid time from 12:10 to 10:10.

Can you tell I was done? I needed a time out!!!

Oh, but we weren’t done!

Aaron was, once again, sitting on his bed while staring at his ridiculous weather station clock. Whose idea was it to get him this clock anyway??!!

All the bases had to have been finally covered, I thought. Aaron’s just waiting for the minute to change, as he usually does, before he will write down the time.

The EXACT time, for crying out loud!!!

“MOM!!!!” he nearly yelled, “it’s FLASHING!!!!!”

“WHAT????!!!!” I nearly yelled in disbelief. “What’s FLASHING????!!!!”

And sure enough, under the very current and precise time, there was flashing the words, “NO WI-FI.”

“It says, no wifey,” Aaron told me.

“You’re about to hear, no mother,” I wanted to say, but didn’t.

“Here, Aaron,” I said now through almost gritted teeth, “you can just turn your weather station clock around like this and then go to sleep.”

But I may as well have told him to climb….

You get it.

No, Aaron could NOT just simply turn the clock around like this or just go to sleep like that. Not with “NO WIFEY” flashing under the very perfect and totally precise time!!!!

I guess Aaron was spent…or knew that I was…because he finally got under his covers and let me escape to my room.

But soon I heard him thump, thump, thumping downstairs…where he told Gary about the flashing “NO WIFEY.”

Then came the thump, thump, thumping upstairs…and the elephant stomps to my closed bedroom door.

“Mom?” he said. “I’m tired of this day.”

“I know, Aaron,” I told him. “I am, too.”

Never were truer words spoken!!

He walked back to his bed.

He was soon back at my door.

“Mom? Do you think I should just wear my watch to bed?”

“I think that would be a good idea,” I replied (hopefully!).

Again, he was under his covers.

“MOM!!!!” I heard from the monitor in our room, “it quit flashing!!!”

Thank you, Lord!!! I really did thank the Lord!

But if you ask me, it’s high time to change the time change!!

At least it is in OUR house!! WHEW!!

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A Sweet Touch from God

Aaron saw the commercial for Pumpkins at the Park, and soon after he was telling Gary and me all about it. I had already seen posts about the event on Facebook and had told Gary that we should take Aaron, so with Aaron’s excitement already abounding I knew it was a match made in heaven. Tickets were ordered and plans were made to drive the mere mile and a half up the road to Tanganyika Wildlife Park on the following Saturday night to experience some pumpkin Halloween fun.

Aaron, who must plan multiple details before any occasion that he will attend, began to ask questions and to get his mind organized for our fun night. His list included:

Will I need a coat?
Will I need gloves?
Will I need a hat?
Will there be lots of people there?
Will there be food to eat?
Will the animals be out?
What time will we leave?
What time will we get home?
Do we have tickets?
Where are the tickets?
Mom, why are you sighing?

I answered all but the last question…multiple times. Which is why I was sighing, but Aaron doesn’t know that. It wouldn’t matter if he did. He just knows Mom’s weird that way and by the way, “Will I need a coat?”

Sigh.

But this is Aaron, and we totally expect the repetitive questions and ultra-planning. His comfort level depends on it, and trust me, we want his comfort level to be high…especially since our comfort level is so closely tied to his. Like, totally tied to his. COMPLETELY TIED!!

OK. Moving on.

As Gary and I climbed into bed on Friday night, the monitor beside us on my nightstand turned on to listen for Aaron, I told Gary that I sure hoped Aaron wouldn’t have a seizure during the night. You see, a nighttime seizure nearly always means a daytime seizure or more the following day. I didn’t want Aaron’s much anticipated Pumpkins at the Park to be ruined.

Wouldn’t you know that at 11:58 I heard a seizure. My heart dropped more than it usually does. Why on this night of all nights must he have a seizure? I was so sad for Aaron as I went to help him, and then returned to my own bed when the seizure was over, and Aaron was safe.

Surprisingly, there were no more seizures that night. But in the morning, Aaron’s eyes and actions showed that he was still feeling the effects of just that one seizure. I feared more would certainly come. He couldn’t even stay awake for his coffee, and later slept on the couch for awhile.

Still, no seizure.

When he napped in his bed later that afternoon, I thought for sure he would have one because that is what’s typical. I listened closely as I carried the monitor with me around the house.

And still, no seizure.

All day long, as we worked outside and as Aaron hung out with our little neighbor’s boys next door, no seizures.

And that evening, there we were at Pumpkins at the Park.

Aaron was totally ecstatic, and that’s no exaggeration. He didn’t stop smiling the entire evening.

We went from this:

To this:

Look at his smile!! Isn’t that just awesome?!

He loved every single part of the park that evening. The scary:

The spooky:

And the sweetness:

Speaking of sweet, I especially love this sweet picture of Gary and Aaron walking on the path.

And I love the sweet touch from God we all felt on that day. It was sweet to spend that time together and not have it ruined by seizures.

Sweet to have this special memory tucked away in our hearts.

Thank you, God, for such a sweet touch from You!

Keeping Everything in A Row

Aaron was busily preparing his little corner of the world one recent night as we got ready to watch an episode of Dr. Quinn. His typical preparations include his snack or snacks of choice, often placed in a bowl; his drink; his hand towel that is always with him; his blanket that is always over him as if he is a nursing home resident; his Nintendo DS beside him even if not played; his video remote; and his chair and ottoman placed just so.

It’s exhausting, unless you’re Aaron. If you’re Aaron, this is standard procedure and no big deal.

On this particular night, Aaron had chosen his rather new bag of Jolly Ranchers to sit on the end table beside him…the end table that bears the scars of being placed right beside Aaron.

“MOM!!” Aaron excitedly said before he sat down. “Here! I want you to have these!”

He handed me way-too-many Jolly Ranchers, his face full of delight because he loves to share. I hadn’t planned to eat Jolly Ranchers, but I wouldn’t disappoint his giving spirit for the world, so I cupped my hands and took his sweet gift.

He was getting situated under his blanket when he remembered something.

“Wait!!” he exclaimed. “I need to get my trash can!”

Having lived with Aaron for so long, I didn’t need to ask what he was doing. There are times that Aaron will use his trash can…and ONLY his trash can…for certain jobs. For instance, every Christmas Aaron must have his trash can with him for whatever he deems it must hold, despite the large trash bags that the rest of us use.

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For whatever reason is in his mind, he knows when his trash can is the one that is needed for certain trash, and obviously our Jolly Rancher wrappers fit that mold on that night.

Soon we were watching Dr. Quinn, relishing our candy as we happily tossed our wrappers in the correct trash can perched between us…and all was right in Aaron’s world.

Like the Bible verse that says there is a way that seems right to a man, there is most assuredly a way that seems right to Aaron…and he will not veer from it, if at all possible. Pity you if you try to make him do so!

Yesterday, Aaron and I piled in the van for our ride to his day group. Aaron loves listening to music and as we are still in dinosaur mode, we use CDs. Aaron looks at each song’s number as he picks up the CD and checks the back for the song number and name. He rubs his hands together with great enjoyment, laughs, and listens very carefully to each song.

Aaron often sings one phrase from the last song he has heard on his rides. He will sing that phrase over and over, usually at home, while he is on his computer. Never will I forget the time that we stopped to shop at Wal-Mart. The last song he had heard was Shania Twain’s “Man! I Feel Like a Woman!” It was very interesting hearing Aaron walk through Wal-Mart and in his monotone voice saying more than singing…over and over – “Man! I Feel Like a Woman!”

The word “interesting” really doesn’t do it justice. Though I’m sure that he and I were VERY interesting to more than one person on that trip.

Anyway, Aaron had chosen to listen to Brad Paisley. We have several Brad Paisley CDs. Something else that Aaron will do is listen to CDs by the same artist in order of their production date, written in microscopic print on the back of each CD. Print that is seen only by Aaron. We cannot listen out of order. Nope.

We jumped in the van, with Aaron immediately reaching down to find the first CD in order, of course. And of course, he knows that the first Brad Paisley CD in the correct order carries the date of 2003. And the 2003 CD was not in the van.

We were still in the driveway, both of us looking for the 2003 CD, even getting out of the van to check behind our seats. I ended up running back into the house and finding three CDs in the cabinet that he had missed.

“YES!!” he said, “there’s the 2003!!”

His joy was contagious as we drove down the road, his hands rubbing together quickly and his laugh filling the van. What a difference it makes when Aaron can have things this seemingly unimportant set right in his world!

Last night, Aaron sat in his chair in his usual fashion as we watched TV. I noticed that he was pulling loose threads from his ever-present hand towel and rolling the threads up into little balls. Later, as we were on our way upstairs for bed, this is what I saw on the end table.

I just smiled and shook my head. How like Aaron and his life are these little thread balls, all rolled up and placed in a precise order according to Aaron’s plan!

And how important I felt it was for me to just leave them there. I could have told Aaron to come back down and clean up his mess! But this really isn’t a mess. This is Aaron’s order, done Aaron’s way.

It’s really a beautiful picture of Aaron’s mind.

And a reminder to me that there are many times when I must understand Aaron’s way of living…a way unlike my own but of no less value. Not try to brush it off as unimportant or messy or inconvenient, but to remember that Aaron is far happier if he is allowed to keep not only his ducks in a row, but also his CDs and his trash can and his candy…

And his thread balls!

Of course!

Fixing the Broken

Last night I felt like this:

Mangled. Broken. Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group. Mixing all the various special needs can at times be volatile. Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair. I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later. I hoped that maybe, just maybe, they really weren’t beyond repair. The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

WOW!! Talk about a miracle re-do of what I thought was hopeless! She received my profuse thanks with a smile on her face and the comment that she loved a good challenge. I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually. I believe that about covers it. And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty. Talking about being truthful, Aaron is just that…at least in his mind. He has few filters, and totally does not get social norms. He is often unaware of other’s feelings. He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning. His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired. I get angry. I did last night, when Aaron who had been happy decided to be rude just before bed. He and I didn’t have our normal cheerful bedtime routine. He was still out of bed, on his computer, when I went to bed. I didn’t even challenge him. I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron. Somehow, it’s easier to show compassion for ones I seldom or only occasionally see. Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add. I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile. He even received the hug I offered! We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights. I had intended to sit there and pray, but sitting with Aaron was important, I knew. We talked softly about some of this and some of that. Then Aaron decided that he could take his pills, but I reminded him that it was too early. He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm. I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule. Gone was my caring at all at that point about the 12-hour rule! In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh. Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot. But today Aaron let me laugh. This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters. Or the 12-hour rule.

But it was good. Very good.

It was our normal.

And it was a gift. A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.” (Psalm 147:3)

Cool Aaron

My phone rang the other day and even before I looked, I pretty well knew it would be Aaron making his daily call from Paradigm, his day group. Yep, there was Aaron on the other end of the call, talking the second I said “hello.” He was excited and laughing about Chris, one of the Paradigm staff.

“Mom!! Me and Chris are playing a game where I can’t talk!”

Well played, Chris, well played! I just thought this. I didn’t say it to Aaron.

“But Aaron,” I replied, “you’re talking now.”

“HAHAHAHAHAHAHA!!!!!” Aaron bellowed. “I guess I forgot the rules!!”

I laughed as well. In fact, it felt very good to be laughing with Aaron. I never know when I pick up the phone in what condition I will find Aaron. Happy, sad, mad, crying, excited…I never am sure, so it’s with some dread that I answer his calls.

I had reason to feel dread this week because Aaron has been in a state of some anger and belligerence for awhile now. We’re not totally sure of the why, but we are totally sure that his ups and downs are tiring to us and to his staff and friends at Paradigm.

This past Monday morning was rough at home. I always let Aaron decide if he’ll go or not, knowing that forcing the issue is a recipe for disaster. But Aaron also knows that if he does go to Paradigm then he gets extra treats and his meal of choice over the weekend. He nearly always decides to go, but my reward system can also come back to bite me because the reason he goes is sometimes just for the future reward, and this stresses him to the point of bad behaviors.

Sometimes it’s just a perfect storm for a stormy day from Aaron!

Monday was that day. Anger at home…then a calming…a fun ride to Paradigm because his music cheered him…and my last admonishment as he left the van.

“Aaron,” I said, “try to have a really good day.”

“I can’t make you any promise,” he seriously replied.

And I had to laugh at that as he walked away. He was borrowing my often-used phrase when he tries to pin me down to doing something at a certain time, and I tell him I can’t make a promise. How well he listens and mimics when it suits him!

And boy, it’s a good thing he didn’t make a promise to have a really good day because it was anything BUT a really good day!! I’m very thankful for the patient staff at Paradigm!

Tuesday saw more issues at home, though not as severe as the previous day. I was encouraged by his good day at Paradigm, but our evening at home hit bottom again. He was not happy that Gary and I talked to our daughter on the phone before supper, in our bedroom with the door locked so that Aaron couldn’t come in and interrupt. Aaron was very rude before supper and during supper. Tough love ensued, ending with Aaron’s Cheddar Pasta Salad being taken away by Dad before he was through…and all his snacks being bagged up by Mom and put inside the locked van.

Well!!

Aaron finally calmed down as the evening progressed. He turned a corner, looked at me as we watched a show, and surprisingly…and nicely…said, “Mom, I’m sorry.”

“Thank you, Aaron,” I replied. “I’m sorry, too.”

“I like you, Mom,” he quietly said.

“I like you, too, Aaron,” I affirmed.

But the snacks stayed in the van, a test of his sincerity.

The next morning, yesterday, saw him irritable again and not wanting to hurry out of bed or hurry to get himself ready. I don’t tell him to hurry – I’ve learned better – but he knows the underlying theme.

“Don’t rush me!!” he stated. “I have no time to hurry!!”

Oh, Aaron! I want to both laugh and cry when he talks that way!

So, this morning, we were getting ready to go to his yearly support plan meeting. Again, he was sleepy and frustrated, and dreading this meeting. It helped that we meet at Carlos O’Kelly’s and get to eat out, but Aaron still does NOT like meetings. He wonders if he can stay at Paradigm, can he stay at home, and all sorts of other concerns. I felt bad that he was scared so I assured him that things are staying the same for now, but still he was on protective mode.

“Mom, I’m telling them that you and Dad are starving me!” he declared, threatening to tell them about the locked away snacks.

Again, I didn’t react and told him he had every right to do just that. But at the meeting, as he chomped down salad and chicken fingers and French fries, he was happy and loud and talked away at everything except his starvation.

We’ve been very weary lately, honestly. I don’t know if his mood swings are because of medicine side effects…because of strong low fronts moving through this week…because of seizures last week…because of who knows what??

As we signed papers today, I laughed at Aaron’s signature. This is his very favorite way to sign his name.

Aaron has such a very hard time playing by our rules…the societal rules that dictate how we talk to others and respect others and give and receive love. Try as we might, we cannot get him to tell us why he’s unhappy…at least not if his emotions are coming from someplace other than the fact that his snacks are locked away or he can’t stay home on his computer all day.

Aaron can convey plenty of facts. What he can’t convey easily are his emotions…his deep-seated reasons for his angry actions.

Gary and I know this about Aaron, but sometimes it’s hard to remember it in the heat of battle. That’s when we need to back away…take a deep breath…lean on each other and God…and remember one more thing.

Aaron Moore is cool.

He’s cool when he tries to sneak another notebook in to Paradigm to give away, knowing he’s not allowed to do that.

He’s cool when he leans against my legs after he’s been so angry.

He’s cool when he’s trying to feed an ant on the table at a restaurant.

He’s cool when he’s giving and sharing.

He’s cool when he’s “drying the bubbles off,” as he says.

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He’s cool when he’s playing a trick.

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He’s cool when he says, “MOM!!” at the grocery store and laughs and laughs at my reaction to him holding my LEAST favorite creature!!

And in so many other ways, our unique Aaron is very cool, even when he makes me lose mine.

Let me remember that, Lord, in the heat of the moment.

Let me remember that you crafted and created Aaron’s coolness.

Aaron Moore IS cool!

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