Special Needs Children – Page 9

The Good-Smelling Difference

Aaron was awake and out of bed very early Monday morning, especially considering the fact that he took a long time getting to sleep the night before. We were late to bed on Super Bowl Sunday, and not just because of the game. He and I watched a Dr. Quinn after the Super Bowl…a SUPER Super Bowl for us, by the way. Aaron would tell you that the team we voted for WON!! YAY!!

Aaron enjoyed watching the game with us. He didn’t have many new insights, except for thinking that he heard something upstairs on fire. What?? He was sure of it.

“I hear a snappeling sound!” he insisted.

Gary and I assured him that there was no fire upstairs, but finally he had to prove it to himself, so up the stairs he stomped – he does sound like a bull elephant! – and came back with the report that there was no fire upstairs.

“There’s the snappeling sound again!” he soon insisted once more.

Still no fire.

We eventually realized that the “snappeling” sound he heard was the sound of the player’s shoulder pads hitting together. Who notices that sound?

Aaron does. And isn’t that word just the perfect word for a crackling fire?

He didn’t eat much of the food I fixed. He did try to convince me when I told him that he could have two Rice Krispie Treats that this was, indeed, only TWO! 😊

On this Monday after Super Bowl, Aaron had an autism doctor appointment. Aaron would tell you that we were eating lunch at Old Chicago as the main event, with the doctor visit as an annoying side trip.

He was chipper and happy, eating some breakfast I fixed him, but by the time we left the house later he had greatly changed. I think he had a small seizure that I didn’t totally catch, only seeing the end of it. Therefore, on the way to the doctor he was very tired, keeping his eyes closed most of the way.

The doctor does a good job with Aaron, trying to get him to communicate with her, but he was still draggy and tired…and his answers often very inaccurate. She and I end up, as we did yesterday, talking about my Aaron concerns.

And my concerns seem to grow. Weight loss…behaviors…seizures…a hard time on many nights going to sleep.

Adding a medicine…the concerns with that…

Just on and on. And so many issues are unknown, even to doctors, when it comes to the brain and to the impact of long-term seizures and meds.

Now I was feeling dreary and burdened as we drove away, Aaron’s eyes closed again. Even inside Old Chicago, as Aaron managed to eat two pieces of pizza, his mood wasn’t his usual over-excited self.

But on the drive home, Aaron and I had fun watching the temperature drop number by number as a cold front blew through. He thought it was great fun! It was also great fun to anticipate getting a haircut, which he loves. I had signed in on-line and he was happy – but still very tired.

We ran home for a quick stop and to grab our jackets. Then I told Aaron that I was sure a few Reese’s Cups would perk him up.

“Yeah!!” he agreed.

He carefully took three small ones, put them in his coat pocket, and off we went.

I never know when we go to Great Clips just how the visit will be. As we walked in the door, I was just happy that Aaron didn’t barge in and loudly say,
“I’M HERE FOR A HAIR-CUT!!!” – as he so often has in the past.

However, yesterday I realized that we didn’t know any of the stylists. I could feel discomfort invading my happiness. I just never know if someone will understand Aaron or stare at him in that all-too-familiar way that makes me half angry and half sad. I was hoping for someone who knew Aaron and was good with him. Instead, we were given the perfunctory greeting as we entered, mixed with inquisitive stares.

UGH!!!

Aaron and I sat in our chairs, him totally unaware of my concern. He wanted to know what Bed Head meant as he examined the products on the shelf, his voice still a little slurred. Finally, he sat down and carefully pulled his Reese’s Cups out of his pocket.

Two were placed neatly on the chair beside him, and the third he slowly unwrapped. He ate it, and then repeated the action two more times.

By then, the stylist walked our way and called his name…and I, with huge relief, saw that Aaron was in very good hands.

I knew he was in good hands because of the stylist’s big smile and her comfortable conversation with Aaron. There was none of the awkward staring or obvious discomfort that we sometimes encounter when we are out.

Aaron sat in the wrong chair, one he has often used, but she handled it so easily. Soon Aaron was sitting in the correct chair as the stylist asked him if he watched the Super Bowl. Perfect question!

“Yeah!!” Aaron answered. “Who did you vote for?!”

“I wanted the Chiefs to win,” she answered. “Did you?”

“Yes!!” replied Aaron, rubbing his hands together in delight.

They talked about Super Bowl snacks as she cut Aaron’s hair and trimmed his facial hair, and soon she was done.

“Aaron, would you like some good smelling stuff in your hair?” she asked.

“I need to ask Mom,” he said as he looked my direction.

“MOM??” he yelled. “Can she put some good smelling stuff in my hair?”

I laughed and said yes, of course, knowing how very happy Aaron would be with this turn of events. He doesn’t have enough hair for good smelling stuff, but that’s not at all important.

Smiling, good smelling Aaron left there a very different person than when we walked in. I did as well, I assure you.

And once again it hit me just how big a difference one person can make in another person’s day….specifically, in Aaron’s day…and thus, in mine.

Later that evening, Aaron was waiting on me to finish some things in my bedroom. He was hovering, as he so often does.

“Mom!!” he suddenly exclaimed. “Do you want to smell my hair?!”

Normally, that would be a no. A big no. But not today, thanks to our difference-making hair stylist.

“Sure I do,” I answered.

Aaron chuckled in joy as I took a sniff. He was rubbing his hands together, a sign of his total happiness.

Who would imagine that such a simple thing as good smelling hair stuff would bring such happiness to Aaron and to me?

His hair still smelled good, but more importantly, his heart was light and happy. The residual nice scent was like the residual warmth in our hearts, both of us.

Never underestimate the difference you can make in someone’s life, especially in the lives of our special ones. It isn’t necessary to spend money or to take tons of time.

A smile…a word…the warmth of understanding…are all such sweet gifts to each of us, parents and children alike.

That good smell lingers for such a long time!

Longer than the good smelling stuff in Aaron’s hair, trust me! 😊

She Took It All

One of Aaron’s favorite things to eat is a Cheddar Pasta Salad from the deli at Dillon’s. The name has actually changed to Cheese Pasta Salad, but to Aaron and to me it’s still Cheddar Pasta Salad. Aaron always gets a large size, watching carefully to see that the container is filled to the brim. We go so often that we’ve gotten to know some of the deli workers, who can always guess what we want when we walk up to the counter.

Yesterday afternoon Aaron asked me if he could have a Cheddar Pasta Salad, so off we went to run an errand before the Chiefs – Titans football game, and then end at the Dillon’s deli. Things were going smoothly, and I was happy that we would make it home in time for the game.

It doesn’t ever seem to matter how carefully I plan our entrance into Dillon’s. Aaron always seems to somehow get ahead of me as we make our way to the deli counter. He is definitely on a mission!

The problem is that he will often push in front of people if there are others standing at the counter. Therefore, he and I are in a foot race as I try to head him off at the draw, before he offends the others who were there before us. Aaron doesn’t care one bit about waiting his turn when it comes to his Cheddar Pasta Salad. He doesn’t notice if people are staring or are angry, if they sigh or if they edge closer to the counter. He only has eyes for the food behind the counter window, looking quickly to see if there is any Cheddar Pasta Salad.

Yesterday there was a mom there with her very cute little girl who was maybe four years old. I made it to the counter just a few steps behind fast Aaron, just in time to touch his arm and remind him that someone was before us in line.

Aaron was very happy to see that there was some Cheddar Pasta Salad in the tray. “Look, Mom,” he said. “They have Cheddar Pasta Salad!”

“That’s what we’re getting, too!” said the friendly mom. “It’s her favorite!” she added as she looked down at her smiling little daughter.

In an instant, I knew that we were in a dilemma.

In an instant, Aaron had figured out that there was NOT enough Cheddar Pasta Salad for both him and the little girl.

And in that instant, Aaron’s face fell.

“Oh boy,” I thought to myself.

The mother was telling me that her little girl just loved the pasta…that she never ate the broccoli…that the mom ate the broccoli…

“There won’t be enough for me!!” Aaron blurted out.

“Yes, Aaron, there will be some for you,” I assured him, while I felt dread creeping up my spine. How far would Aaron go in his disappointment? Would he become angry?

The mother also told Aaron that they weren’t taking all the salad, but Aaron could see that there would not be enough for his large container.

He stared down toward the floor, not making eye contact, as he tried to process the fact that these interlopers were taking HIS Cheddar Pasta Salad!

Their transaction done, the mother told us to have a good day and told Aaron to enjoy his salad.

“Shut up,” Aaron softly replied as he continued looking down at the ground.

I was horrified!!!!

The mother and cute daughter were walking away as I sternly told Aaron to say thank you to them.

He refused.

I told him through firm lips that he would NOT get his salad if he didn’t say thank you.

The girl behind the counter, new to us, was waiting on my order. I fumbled out that we would take the rest of the Cheddar Pasta Salad.

“She took it all,” Aaron flatly said.

My face was flaming.

The mother and little girl were a short distance from us. The container…the medium size and not the large…was being filled with the last of the Cheddar Pasta Salad.

“THANKS!!!” Aaron suddenly bellowed.

And the mother turned and smiled at us. I wondered if she could see the distress on my face, and on Aaron’s as he processed taking home a medium container.

Not a LARGE!!

Then the mom and her daughter turned and walked right behind us. I touched her arm and whispered to her.

“I don’t know if you heard what he said, but I’m so sorry,” I told her.

She said she didn’t hear anything. I softly told her that Aaron has autism, but I could tell she knew.

“Don’t even worry,” she kindly said. “My older daughter works at Open Doors with autism all the time, so I totally understand.”

Relief washed over me…partly because they hadn’t heard Aaron’s comment and largely because she was so kind.

I thanked her, turned back to Aaron…who was staring dejectedly at his medium container…and then she said to me:

“You’re a very good woman.”

I was so surprised! I thanked her.

And I blinked back tears and swallowed the growing lump in my throat.

I was so happy that now Aaron was holding a jar of Chili Fig Spread, excited about his new find, moving on to the next thing as he always does.

He is so oblivious to other’s emotions. So clueless as to the stress he inadvertently creates.

SO unaware of how embarrassing and wrong it is to tell someone to shut up!

But he did just that.

And he will do it again.

So, we give the lectures and we live the example, but none of that can permanently re-wire his brain.

I picked myself up off the floor, figuratively speaking, as I gathered my wits about me and picked up the pieces of my shattered motherly pride.

Yes, my son is the one who told you to shut up.

But this is our life with Aaron.

Aaron, who wants life to fall into place his way and when it doesn’t, is hardly able to do anything but to tell the offender to shut up.

But he DID say thanks!! I’m so thankful for that!!

I DID give him his Cheddar Pasta Salad. Look at his sad face, though.

His medium…not large…Cheddar Pasta Salad.

“She took it all,” he said over and over as we walked through Dillon’s.

“She did NOT take it all!” I reminded him over and over.

We actually got a lot in return at that deli counter.

A large serving of kindness goes a long way!

MERCY!! AARON!!

I’m a southern girl. Well, from southern West Virginia – born and bred – so no matter what the Civil War folks say about my home state, I still consider myself to be from the south.

I guess that’s why sometimes I just want to look at Aaron when he’s being a particular form of disagreeable and just say, “MERCY!! AARON!!”

And then tell him that he just needs to hush!!

When I talk to Andrea or Andrew on the phone, Aaron invariably barges in the room and wants to talk. This happened on Saturday evening as Andrea and I were gabbing away. I knew Aaron would persist until I caved, so I finally put the phone on speaker and off Aaron went.

He was particularly fixated on Luigi’s Mansion 3 – his newest Nintendo Switch game. And he was even more fixated on going over Luigi and Gooigi. I think I spelled that right.

He wanted Andrea to know who Gooigi is. What Gooigi is made of. What color Gooigi is. What Gooigi looks like. What Gooigi does.

Andrea, ever patient with her brother, commented on everything Aaron said. She even asked questions…good questions…which fanned Aaron’s flames and off he blazed.

Talk, talk, talk, talk, talk.

It took me awhile to put out the flames. I usually have to end the talking by telling Aaron to say goodbye, after he has pushed me away several times from taking back the phone.

Never once does he ask about Andrea or Kyle, or Darcy or Oakley or Aries or Siggy…all dogs, by the way. 😊

For some reason on Sunday evening, Aaron kept referring to that phone call. He declared that I only wanted to talk to Andrea…that I never talk to him (REALLY??!!)…that I would hardly let him talk to her…and so forth and so on.

Everything is bad to Aaron when he gets like this, including the fact that I am a bad mom. I eventually shut down when this happens, meaning that I do not fan the flames of Aaron’s anger by things I say. Even my eyes – “Don’t squint your eyes, MOM!!”…or my voice inflections, can increase his anger.

Nothing that I say helps. Nothing that Gary says helps.

Aaron’s lack of empathy and his inability to connect the dots like we do is a most frustrating part of his autism.

The next morning, weary and bothered, I thought of how my friend – a manager at Aaron’s day group – deals with these issues on the day after they occur. Aaron often doesn’t want to go to Paradigm on that “next day” after he has blown it, but Barb always reminds him of an important truth.

“It’s a new day, Aaron,” she says. “We just start all over and don’t let yesterday bother us.”

Thinking of that…of a new day…reminded me also of the wonderful promise in Lamentations 3:22-23:

“The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.”

God’s love and mercy to me, no matter how much I sin, is new every morning. And I know that I must also face every new morning with Aaron in the light of God’s loving-kindness to me.

If God is so loving and kind to me, how can I be any less to Aaron?

That next morning was still a little rough on Aaron’s part. And then when I picked him up in the afternoon, as I watched him approach the van, I saw him stop and turn, running back into the building.

He returned, holding a paper that blew in the wind as he ran toward me again, his face all smiles.

IMG_1900 (002)

“MOM!!” he said as he got in the van. “I colored this for you!”

With great delight he handed me this picture:

I was so touched. So amazed.

Amazed that Aaron sat still long enough to color.

Touched that he wanted to mend our fences in such a sweet way.

And both amazed and touched that it was a cross he colored for me.

You see, it’s because of the cross that I can even begin to love Aaron as I should, especially when he is at times so unlovable.

It’s because Jesus died for me, and because He is my Savior, that I AM loved and that I CAN love.

And I love how the old King James Version says that verse I wrote earlier. “It is because of the Lord’s mercies that we are not consumed, because His compassions fail not.”

I am not consumed by hatred and sin or God’s judgment, but only because of God’s love and mercy.

Love and mercies that are new every morning.

Like I said, how can I love Aaron any less when I am so loved by God?

One more thing. The cross is also the reason that I can bear the sadness and fear of Aaron’s 3:00 a.m. seizure today, and another one later. The reason I can see him sleeping again now and know he may likely seize again.

The reason I can bear up under the disappointment of our doctor day being canceled…because doctor day means, to Aaron, eating out day. And he does LOVE eating out! It’s always a fun and happy day, but not today.

Aaron goes through these disappointments and rough days often, which means I do as well.

But like the verses above said, great is God’s faithfulness. He doesn’t leave me to handle it all alone. He is right beside me, my best friend, with His mercies and love that give me His peace that passes understanding.

Speaking of understanding, I won’t even go into all the detail of having to wash Aaron’s favorite fuzzy blanket today because he spilled coffee on it…and how it’s the only blanket that he wants to use on his lap when he’s at his desk…or on the couch.

About trying other blankets.

Rejecting those blankets.

Checking his blanket in the wash.

Observing me putting it in the dryer.

Following me around the house because without a blanket he can’t sit or lay.

MERCY!!! AARON!!!

Hanging Off – Or On?

Aaron has a way of repeating what we say but changing just one word or even just one letter, and so making us laugh or pause in thought. He has a uniquely Aaron way of expressing himself.

That is, after all, the reason I started this blog and the reason I named it He Said What?!

For instance, yesterday we had some rough weather move through our neck of these Kansas woods. Aaron was concerned, asking about the storms and wondering if he should turn off his computer.

I’ve often shown him the radar and pointed out some storms headed in our direction. I sometimes refer to them as a clump of storms coming our way.

So, as he followed me around the house and fretted over his computer being hit by lightning, he said, “Mom! Is that lump of storms going to hit us?!”

Two words, so similar, yet somehow the difference was enough to make me laugh.

Aaron has become a fan of the television show Chicago Fire. In December the fall finale had the typical…and very unrealistic…cliffhanger. Aaron has talked and talked and talked and talked about those canisters in that basement, surrounded by fire, and whether they would blow up or not!!!

I told him that this was a cliffhanger. Aaron, who is very literal, saw no cliff in that fall finale. He also saw no one hanging from a cliff in that basement.

I therefore…and not for the first time…explained that a cliffhanger is when the show’s producers leave you hanging on after the last show of the season in order to make you come back and watch the first show of the new season.

Hanging ON.

But here is Aaron’s take:

“MOM!! I can’t wait till January 8^th!!

Then he waits for me to ask why he can’t wait till January 8^th.

“Because that’s when Chicago Fire comes back on!!”

Then he waits for me to show excitement. I am a good actress.

“Remember how they left us hanging OFF??!!”

Then I laugh. He thinks my laughter is an expression of my excitement over Chicago Fire resuming.

But my laughter is really about the way he changed my original phrase.

Are we hanging ON…or hanging OFF?

His change-up of that one little word has had me pondering over the past few days.

Hanging OFF a cliff is a scary situation, to put it mildly.

Hanging ON, to me, conveys hope.

In life, when I am hanging off a cliff of fear or dread or disappointment…or any number of other scenarios…I must remind myself to hang ON.

I hang ON to God and to the hope that He gives me.

How often our life with Aaron changes! We can so quickly go from enjoying life:

To the suddenness of seizures:

The above picture was right after Aaron’s third seizure on Christmas Eve, just as we were getting ready to play Christmas Bingo as we Skyped with Kyle and Andrea from Houston.

It’s a stretch for Aaron to want to play games. My first heart reaction was to wonder why. Why must he have a seizure when he was actually willing to sit with us and play a game?

Sometimes his seizures keep him from participating in something that he really wanted to do. That makes me sad for him. Disappointed.

He did arouse enough to play Bingo, but I played his card because he was uncoordinated and shaky…and grouchy, which is typical when he plays Bingo.

Every day…every situation…can be a cliffhanger with Aaron. Will we have seizures to manage? Behaviors to handle?

I do feel like I’m sometimes hanging off a cliff, holding on for dear life, afraid of what’s next and afraid of falling…of failing.

But then I must remind myself that I’m not alone. I know and trust God.

And I hold ON to Him.

I don’t understand everything.

I don’t even like everything.

But I love God, and I know He loves me.

So whatever cliff it is, I do know that I’m not just hanging off.

I reach up and I hang ON to God.

He lifts me up and He rescues me…not from the situation, necessarily…but from the danger of despair and hopelessness that can so easily overwhelm me.

After all, look at what God says about Himself in Psalm 91:15:

“He will call upon Me, and I will answer him;

I will be with him in trouble;

I will rescue him and honor him.”

May I remember, every day and in every cliffhanger, that I don’t need to just hang off.

I can hang ON…to the God Who rescues me.

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!

IMG_1689(Edited)

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.

IMG_1442(Edited)

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!

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