Patience – Page 3 – He Said What?!

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.

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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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!

Smooth Gliding

Aaron had a seizure shortly after 4:00 this morning, so I kept him home from his day group today. One seizure not only makes him feel bad when he gets up and about, but one seizure can also mean more seizures to come…especially drop seizures that are so dangerous.

As I went sleepily up the hall this morning to be with him, I was mentally trying to remember what my day held that would need to be changed. Fortunately, today was just errand day for me…nothing critical that had to be rearranged, like a doctor appointment for me or for Aaron.

Still, the point is driven home yet again that I am always on call when it comes to living with Aaron. Any caregiver knows what I mean. It’s very difficult if not impossible to commit myself to activities that would demand my presence, like a job or even some volunteer positions. And that’s OK for me, thankfully. God has blessed me with the privilege of being able to stay at home with Aaron.

Sometimes that blessing, though, can turn into a struggle for me. Aaron isn’t always easy to care for. Oh, I can handle seizures and wet bedding and interrupted schedules and doctor appointments and all the rest that goes along with life…life with Aaron.

It’s his behaviors, at times, that wear me and Gary down. Aaron’s ups and downs due to his autism can be exhausting and so very frustrating. Then when I erupt, along comes the guilt and the “I’m so done!” attitude. My own ups and downs are personally exhausting to me on so many levels.

So today, in an odd kind of sad way, has been a reprieve for both me and Aaron. He is far happier when he has no place to go…no schedule to keep…no expectations. And happy Aaron equals happy Mom – though my heart is always sad to see his seizures and the toll they take.

One toll is that Aaron often loses his taste, as he says, after seizures…and today was no different. Nothing interested him for lunch until I mentioned cream of chicken soup. He slurped happily while watching a bit of the old Incredible Hulk television series, leaning back occasionally to hold his head.

Later, I sat down beside him and asked this magic question:

“Aaron, would you like to go get a milkshake?”

How Aaron loves milkshakes!

“Yeah!!” he answered as his eyes lit up. “And can it be a hot fudge?”

I agreed to hot fudge, and Aaron was happy and very ready to go.

When I later told him it was time to leave, he came to my closed bathroom door with his report.

“Mom,” he said. “I have on my shoes and my glasses and my watch.”

Bless his heart. Preparation details for these excursions are very important, even if Sonic is only one mile down the road.

When we got home, Aaron sat on our porch glider with his yummy hot fudge milkshake while I watered the porch plants and swept away some unwanted spider webs. Then I settled in beside him.

It’s a beautiful day today, and our time on the front porch and out in the yard later was so sweet. We examined the veins of the flower petals he pulled off my orange geranium. We talked about the dragonfly that landed near us…about the squawking blue jay we heard…about mosquitoes that drink our blood…about the squirrels that steal all our pecans…about the bag worms that haven’t built any web nests this year…about the bush that needs pruning yet again…and about the molted remains of Cicadas he found.

We examined mushrooms in the back yard…small, medium, and large.

And watched honeybees in the Rose of Sharon blooms, laughing at their legs all fuzzy with pollen as they flew around from bloom to bloom.

We also rocked in our front porch glider. Well, we attempted to rock. That’s because rocking with Aaron in the glider is either smooth and fun or is more often a lesson in frustration.

You see, Aaron has a hard time keeping a joint motion going as we try to rock. I go forward and Aaron is going backward. Or he keeps his feet locked on the ground, stopping the motion altogether. When he does master the idea of rocking simultaneously, he goes too fast and furious.

Smooth gliding with Aaron for any length of time is nearly impossible because he doesn’t cooperate. He’s not trying to be difficult. He just doesn’t have the motor skills to master the art of joint gliding, so we end up with an awkward mess most of the time. It takes time and patience on my part to hang in there with him and make it work, at least part of the time. It’s often best to just stop for a few seconds, and then try again.

In my walk with God, I’m often like Aaron on the glider. I don’t want to be. I don’t mean to be. But oh, sometimes I am so out of sync with God and with who and what I know Him to be. This is true especially in relation to our life with Aaron.

Over the years, God has worked and worked on me to show me that His ways are best, always. Not easy, but best. This path upon which God has set me is of His choosing.

But you know, I get tired. I find myself saying more and more that I’m done…just done. Yet that’s when God, if I get still and listen…like when I read His Word to me and I pray it back to Him…says to me that He understands. He knows tired and He knows being done.

What I need to know is that He is God. I just need to be still…to quit striving…and to know that He is God (Psalm 46:10). Sometimes God just needs us to stop the rocking, rest a spell, and then pick it up again.

And I need to let Him do the leading. It’s a mess when I take over.

I do that by trusting Him, obeying Him, confessing my failures, and looking at Aaron as a gift of God in our lives.

God doesn’t expect perfection from me, but He does expect cooperation if I want to live in peace and joy. Peace doesn’t come by my surroundings being what I want them to be. Peace comes to me despite my surroundings so often being an awkward and frustrating mess.

“Just be still now,” God says. “Quit trying to be the lead as we’re on this glider of life. I’m right here beside you. Let Me lead and you follow.”

“Lead me in Your truth and teach me, For You are the God of my salvation; for You I wait all the day.” (Psalm 25:5)

The Dandelion

I’m a little…actually, a lot…fired up right now because of an article I just read. Apparently, a special-needs teacher in Indiana decided on award night to present one of her male students with the Most Annoying Male award. Yes, you read that correctly. She did this in front of all the other students and their parents, including the parents of this young boy.

OK. You have the background now for why I’m upset. To publicly humiliate this boy and his parents is inexcusable. To do it in this fashion is heartless. And the fact that this woman actually teaches special-needs students is beyond belief.

Yesterday evening, after we ate supper and as I was cleaning the kitchen, I looked over at our kitchen table. The evening sun was shining in the windows beside our table, highlighting the beautiful flowers that Gary brought to me last week for our anniversary. The flowers still look so gorgeous, so bright and cheerful, that I just had to snap a picture.

When I look at those pretty flowers, I’m reminded of Gary’s love for me over all these years, and how he showed it on this particular occasion. Gary shows his love for me every day in so many ways, but he knew that these flowers would be a very special way to demonstrate his love on our special #40 anniversary.

Later, I went out to the garage to talk to Gary while he whittled on a walking-stick he’s finishing. It wasn’t long, though, before we heard the familiar sound of Aaron’s fast walking headed in our direction through the house. He loudly opened the door and barreled into the garage, primed to talk about whatever was on his mind. So much for our quiet conversation, Gary and I both said without speaking as we looked at each other.

I became occupied with some things that needed my attention, soon realizing that Aaron had disappeared but had not gone back into the house. I stepped out on the driveway and sure enough saw Aaron at our neighbor’s house. He was standing at their pool talking to them as they were, I’m sure, trying to have a few moments of conversation without interruption from either of their young boys. After calling to him a few times, Aaron turned to come home, and I turned back into our garage.

A few seconds later, Aaron rounded the corner and ran excitedly into the garage. “Here, Mom!!!” he exclaimed. Into my face he thrust his gift…a decrepit looking and closed-up Dandelion.

Aaron was all smiles as he awaited my reaction, holding this unimpressive Dandelion under my nose. Honestly, my first initial impulse was to say something like this: “Oh Aaron, how sweet, but I don’t need a Dandelion in the house.”

Yet something stopped me as I saw Aaron’s huge smile and looked at how his eyes were sparkling with delight. So, I took the little Dandelion and instead thanked Aaron. When I did, Aaron spontaneously put his arm around me and gave me the sweetest side hug! If you know Aaron, you know how unusual this was! I hugged him back, a little awkwardly because I had been turning to walk away and because I was so surprised at his hug.

Aaron chuckled, full of satisfaction at his good deed. I told him to come with me and we would put this special flower in some water. This made Aaron very happy! When I put the browning and unimpressive Dandelion in a small plastic glass of water, you would have thought I had put a gorgeous bouquet in a crystal vase. Aaron grinned from ear to ear as he bounded back outside to talk some more to Gary.

I decided to put Aaron’s little gift beside Gary’s big gift, which only accentuated the smallness of this meager Dandelion. Yet, in no way was Aaron’s intent any smaller than Gary’s. Both were full of love, expressed in two different and yet two very sweet ways.

This is Aaron. He does, in the midst of his often perplexing and annoying ways, show us his love. He shows love on his terms and in his times, not usually on ours. But in allowing him this freedom we are also allowing him to be expressive in manners that suit him and that come from deep in his heart. It’s beautiful to see!

You notice I did say that Aaron can be annoying. Aren’t all of our children, at times? Yet never would I publicly shame Aaron as this teacher did to her student. Our special children often find it impossible to function as expected in our complex world, but they are rarely setting out to purposely be annoying. It’s up to us as parents and as teachers to understand this and to respond appropriately.

I don’t always understand, and I don’t always respond as I should. Like last night as I said goodnight to Aaron, why did I choose that time to mention his need of improving his showering skills? It took him a while to wind down from that, just when I am most tired, but what did I expect? There are times I need a lip zipper, for real!!

This morning I saw that Aaron’s closed and rather ugly Dandelion had opened fully and was a bright yellow. I showed Aaron, and he smiled a smile that was as bright as his Dandelion gift.

Our special children…ALL of our children…will open and thrive if given the opportunity. A little water and some light totally changed my little Dandelion. He still looked small beside the larger vase of flowers, but he has quite a large place in my heart.

Just like our Aaron. If given the chance, he can shine along with the biggest and the best. It’s just going to be in HIS way, and I need to know that this is a good thing. A very good thing!

I also need to remember to point out to Aaron his own progress and accomplishments. He loves hearing affirmation, just like he loved seeing his Dandelion gift sitting there looking brand new. It reminded him that he had made a very good choice!

I pray that Indiana special-needs teacher will understand this someday, too. And I especially pray that her student will be nurtured and will open up to his full potential…and that someone certainly threw away that awful “award!”

The Turn Signal

A few months ago, as I headed out of our neighborhood taking Aaron to his day group, I noticed that my right turn signal didn’t sound right. The second time that I pushed up on the turn signal lever and heard that very fast clicking sound, I knew what it was. Either my front or my rear turn signal was out. I drove across town, dropped Aaron off, and then before leaving I got out of the van to check the turn signals. Sure enough, the rear signal wasn’t working.

Bummer! Of all the days to have this happen, it had to be on the day I had several errands to run instead of just going straight home. One of the places I had to go was McConnell Air Base…and they are super picky there about things like the speed limit and vehicles working correctly. Imagine that!

I drove under the speed limit the entire time I was on base and was thankful that I only had to use my right turn signal once. But I was sure that this one time would be the one time that an MP was behind me!

I had also promised Aaron that I would take him to one of his favorite stores, Big Lots, after I picked him up. Our local Big Lots had closed, so I had to once again do some extra driving in my defective van. I never knew how many times I needed that right turn signal until it wasn’t working! And I decided a possible conversation with a police officer was a better choice than the conversation I would need to have with Aaron if I told him our Big Lots trip was cancelled.

I wanted to paste a sign in the rear van window that explained my situation…to let others know that I knew my light wasn’t working…to tell them that I really DO know how to use a turn signal. How many times have I said that very thing out loud about other drivers who don’t use their turn signals? I was feeling a little guilty, wondering how many of their signals were broken, too.

Sometimes we just can’t see and don’t understand what a person is going through, do we? We look at the outside and think things look fine, but the inner workings of a person are far more complex than what we outwardly see. This fact is very true for every single one of us but is very VERY true for our Aaron.

To be clear, I am not saying that Aaron is broken. What I AM saying is that Aaron’s responses and handling of life situations can manifest outward behaviors that are extremely frustrating for others around him to understand and handle correctly. His brain is wired way differently than typical people, and so his turn signal often doesn’t let anyone around him know the direction he is getting ready to take until he’s turned that corner and there’s no going back.

Karen Williams wrote in a paper years ago concerning students with autism: “Rage reactions/temper outbursts are common in response to stress/frustration. Children with Asperger’s Syndrome rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate they should be. Interacting with people and coping with the ordinary demands of everyday life take continual Herculean effort.”

Williams was writing about young students, but this same description also applies to adults with autism…to our adult with autism…our Aaron – who definitely flipped his turn signal on last week at the theater.

First, the set-up: Aaron had been home for three days this past week due to our severe weather chances and flooding concerns. Aaron loves being at home where he is totally relaxed and able to do all the things he enjoys. But when he must re-enter normal life, like going back to his day group at Paradigm, it is often a huge struggle for him. And therefore, for everyone around him.

On Friday, Aaron was reluctant to go to Paradigm. Even the thought of Friday movie day didn’t really help him. He decided not to go to the theater, despite having his nine dollars in his wallet for popcorn and the prospect of a fun movie to see. I encouraged him to go to the theater, and his staff encouraged him to go after texting with me. But no one MADE him go. However, that is not at all how Aaron saw it. His anger was getting deeper.

Second, the incident(s): At the theater, Aaron took a behavioral turn that everyone could see despite his lack of a working signal. I don’t even know all that happened there, and don’t really want to know. I believe, though, that his day group staff was told by theater staff that Aaron needed to leave. No matter what I know about Aaron and what I understand about his autistic outbursts, these times test my love and my patience. I’m a normal mom who is terribly embarrassed when Aaron blows it, especially in public.

I wonder what all he did there. Who saw him? Did anyone we know see and hear our son acting that way? Now what?

Third, the repercussions: When I went to pick Aaron up at the theater, he was sitting in the Paradigm van. Aaron emerged from the van with a very unhappy face, and I knew something not-so-good had happened. Athena, his kind staff, gave me a very brief update, but Aaron’s still-angry mood told us it was not the time to discuss it.

He and I talked about it on the way to Wal-Mart, and again inside the store. But Aaron was saturated with frustration and guilt so I knew I could only say so much before I would push him over the edge again. Two repercussions that initially happen with Aaron, when that angry turn he took is over, are regret and guilt. He truly wishes that he hadn’t gone so far in his anger.

Aaron was totally compliant in Wal-Mart, overly so. This is his way of making up for his angry actions. At the self-checkout counter, Aaron was super helpful. He held my coupons, helped unload the cart, and couldn’t say thank-you enough to the clerk who assisted us.

“Am I being good, Mom?” he asked at one point. “Am I helping?” And he looked me square in the eyes, waiting for my response and my affirmation. It would have been so easy for me to say, “Yes, Aaron, but I sure do wish you would have been this nice in the theater!”

But when I saw his eyes, tired from the bad day and hopeful that he was finally doing something good, I nearly cried. Right there in the check-out lane at Wal-Mart with holiday shoppers all around me, I wanted to burst into tears for Aaron and for me. For Aaron, because I fully know that he can’t repair his broken turn signal in time to avoid that wrong turn. And for me, because I love him and I want to “fix” him, but I really can’t.

I turned away quickly and finished paying. Aaron helped gather up the bags out of the cart and we walked to the van, happy that the rain had stopped. When we got home, another storm was coming. Aaron was concerned about the lightning while he was on his computer, so he wanted me to be sure and tell him if he needed to shut the computer off.

“Mom,” he instructed, “come up and tell me, or call to me from downstairs, OK?”

He waited for me to respond.

“I’m giving you two decisions,” he finished.

I always smile at how he says that…two decisions instead of two choices.

But I thought of how true his saying was at that time. I did have two decisions regarding more than lightning and his computer. I also had two decisions about that turn signal issue of Aaron’s. I could be angry and berate him, or I could be loving and instructive at the same time. The decision is mine to make, despite how difficult it sometimes is. It’s easier to lash out at Aaron, honestly, but harder to be loving and patient with instruction thrown in. Yet the first decision only brings more anger and hurt. The second decision, hopefully, helps to fix Aaron’s hurting heart and show him a better way to handle his anger.

Back to my van’s turn signal – Gary was able to pick up the correct part and repair it that evening. Aaron was beside him the entire time, at one point using that moment to show Gary some scrapes on his legs. Aaron is so oblivious about how he looks in public, and at times it’s really funny.

But at other times, like the theater incident, it’s anything BUT funny. How we wish that we could install the part that would make Aaron’s turn signal work correctly and avoid all the damage that’s done when it doesn’t!

How many times do I wish I could paste a sign on Aaron’s back that explains his behaviors?!

I can’t, though. We just keep driving down this road with Aaron, trusting that some people understand and not worrying about the ones who don’t. Easier said than done! But God does give grace and He gives us wisdom to make that right decision…and He redirects us when we don’t!

Aaron’s turns aren’t easy when his signal’s messed up, but we’re there to repair the damage and pray it works better at the next turn.

And sometimes hang on for dear life!

Included

Last night, I peeked into Aaron’s room and saw this:

THIS…is Aaron finishing The Meg movie by watching the credits. He keeps his eyes glued to the screen as if he is looking at the most pivotal part of the movie and wouldn’t dare look away. He knew that I was getting ready to go downstairs so that he and I could watch our nightly show.

“Mom, I’m almost done!” he said. “It won’t be long!”

To Aaron, the credits are a part of the movie. He will not end a movie when most of us say that a movie is over. No. The movie is over only when the credits end.

If Aaron starts something, he will finish it in his Aaron way.

Aaron has started something else recently. It’s not the first time we’ve seen him start this thing, but it’s the most recent. It’s not something that we can touch or see, but it’s something that we definitely hear. And feel…because Aaron feels it deeply.

I can explain it by telling what happened a few weeks ago. We were eating breakfast on a Saturday morning on our patio. Gary prayed before we ate. One thing he did was to ask God to take care of us, and also to bless and take care of Andrea and Kyle, and Andrew. He named them, but for us three sitting at the table, Gary just said “us.”

No big deal, right? Wrong.

Aaron’s head popped up after the prayer and immediately he said, “You don’t also want to love ME?!”

Gary NOT using Aaron’s name did NOT sit well with Aaron.

We talked about why Gary called us “us,” and explained that it had not one thing to do with not loving Aaron. Aaron finally hushed about it, but we could tell he wasn’t totally convinced.

Like I said, once Aaron starts something, he will finish it…sometimes weeks later. And even if we think it’s finished, one more little part of it may emerge at any moment.

Aaron has a very difficult time expressing his deep feelings in conversation. He also has a blind spot when it comes to seeing how he is affecting others at times. But to be so unaware of other’s reactions, he sure can see a difference sometimes in how we talk to him compared to how we talk to our other children.

For instance, when I’m on the phone with Andrea, Aaron will almost always stand beside me at some point and want to talk to her. He waits and waits until I let him have the phone, or turn it on speaker, and then he goes on and on and on about his latest movie or game. He doesn’t ask her about her life but gets his satisfaction by doing all the talking. Andrea responds so well, and Aaron loves it.

But Aaron has also observed that the way I talk to Andrea, and she talks to me, is different from how we talk to him. He doesn’t get why it’s that way, and he really isn’t able to change it, but he does know that our interactions with each other are not what they’re like with him.

This has been bothering him lately, and he’s been comparing himself to her or to Andrew. Therefore, he strives for attention…and Gary and I strive to give him a share of our attention while we are getting more and more tired of the striving.

The other night, Gary and I snuck outside and sat on our front porch. Just the two of us. Talking. Uninterrupted.

But then we heard the door in the garage close. Aaron popped around the corner. We were caught!

There Aaron stood, talking and talking and talking. Talking about Terminators and Trandoshians and clones from the Delta squad and visor modes…

Our brains freeze and our minds wander when Aaron talks non-stop. Then he asks a question, waiting for an answer, and we do a mental hustle trying to remember what on earth he was talking about. It’s a scenario repeated so often, and one that Aaron so often interprets as a lack of interest on our part.

A couple nights ago, Andrea texted during supper and sent us a picture of what is growing on the mystery plant in their yard. Grapes! It was fun to see the picture as we’ve all wondered if the plant was a grapevine. Gary and I were happy!

Then yesterday, she sent a picture of their first onion harvest from their backyard garden. And again, we were happy.

But Aaron was not happy. Once again, he sensed more enthusiasm from us about Andrea’s life than his. And once again we were doing damage control for much of the evening. UGH!!

This morning, Aaron was up and on his computer at 4:30. That’s 4:30 A.M!!! I got him to go back to bed, but he was up again not long after. And as I talked to him, he mentioned Andrea and her things and he hoped she wouldn’t call.

I sighed. But not where he could hear me. He heard me sigh once when I was on the verge of anger.

“Don’t breathe madly!!” he commanded me.

I went to the kitchen this morning, and then decided to do the hard thing that I didn’t feel like doing. I walked back upstairs to Aaron, sitting at his computer.

“Hey, Aaron,” I said. “Do you want some eggs and bacon?”

He did. So later, there we were, sitting at our kitchen table eating eggs and bacon. I wanted to be having my quiet time and talking to God, but here I was having a not-so-quiet time and talking to Aaron.

But before I prayed over our food, Aaron blew me away by what he said.

“I just want to be included,” he said.

That was truly amazing! And as we ate, I was able to assure him that he IS included in our lives. Yet no number of words coming from my mouth gave him assurance of that fact as much as my listening to HIS words coming from his mouth.

Really listening. Asking questions. Looking at his Ironman Guide Book that he ran and got from his room.

The flying fortress. AIM. Girl face statues. Titanium Man. The frozen ship. The brain controls that make you dizzy. And oh, SO much more!

Then I got a text on my phone.

“Better not be Andrea,” Aaron muttered. “Like her grapes and onions!”

I wanted to laugh but knew better. And I know better than to think that this inclusion and being loved business is settled. I know it isn’t. But I was very touched by how Aaron calmed and responded when he knew he had not only my full attention, but my full interest.

The credits on this part of Aaron’s life movie are still rolling, and we must show interest…and also guide him to know when it’s time for a break.

And that a break doesn’t mean exclusion!

God, give us and so many other parents like us the grace to love ALL our children just the same, even when the expression of that love is anything but the same.

My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening. I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures. I would rather have heard a seizure, honestly.

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels. I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook. I love sharing the very unique and humorous ways that Aaron speaks. His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word.

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00. He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set. But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer. When Aaron plays a game like this, he has a very hard time stopping it and saving it. He must reach a certain point in the game, and in his mind, before he will turn it off. For over an hour he kept repeating the same phrase, loudly: “I’m coming!!” Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time. We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out.

“Can we watch Bones, Mom?!! Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that. He was in such a tizzy. And he could tell that I was tired and didn’t want to stay up late. His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility.

Mom was mean. Mom was dumb. Mom didn’t care. On and on.

He turned his DVD on. Turned it off. More yelling. Turned it on. Turned it off. Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry. I wasn’t crying, but he didn’t believe me, so he stared and stared at me. And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much. He looked so funny, really, that in my tiredness I did the forbidden…I laughed. Aaron thought I was laughing AT him personally. He erupted and we traveled even further downhill than we already were.

It was a wild hour after that. He was in and out of his bedroom…in and out of bed…in and out of our bedroom. He was calmer talking to Gary…angry talking to me. Say goodnight, Mom…no, don’t say goodnight, Mom. I don’t want your goodnight kiss…OK, I do want your kiss.

He calmed when Gary came upstairs. He let me hug and kiss him goodnight. And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated.

My calmness during the whole episode only seemed to fuel his flames. The realistic, upset words I did say seemed to appeal to him more than soft kindness. So strange how that works. So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors. Seizures are scary and sad. Behaviors are exhausting and often hurtful. People feel sorry for seizures. But behaviors…what do you do with behaviors?

And behaviors leave me feeling like a very unfit special needs mother. I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me. Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort. But my tension was strong, too, and sleep wouldn’t come. My tossing and turning was keeping Gary awake, too, I knew. I would relax and then thoughts would wash over me. I would relax again and Aaron would stir, seeming to be restless as well.

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately. How could I have handled it differently? What should I have said? What should I have NOT said? Guilt for not liking Aaron when he’s out of control. On and on.

What I do know is that God is always there for me. He heard me last night, there in the dark, praying and confessing and praising. He knows my form. He knows that I am human and that I am weak and that I need Him, totally. He knows that I get frustrated and tired, and that I do love Aaron with all my heart. And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy. Some days…and happenings…make it harder than others.

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace.

That’s the kind of parent I need to be with Aaron. Forgiving him…understanding but not condoning…and opening my heart and my arms with love.

I have no superior wisdom or strength. I mess up…I give up…I look up. And there I find God, always understanding and giving me grace.

God’s a good Father to me, his special needs daughter. I need all He gives to me and does for me, for I have nothing of my own. He certainly didn’t choose me for this parenting role because of anything I have to bring to the table. He chose me because…well, I don’t really know. But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest. Which is often.

God loves me, His special needs daughter.

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care.

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