Special Needs Children – Page 9

Tired of This

Recently, Aaron had his Epilepsy doctor visit. After his appointment we had to walk over to the building next door for Aaron to have some blood drawn. His liver function needs to be checked routinely due to one of his newer seizure drugs. Aaron wasn’t thrilled about that because he really wanted to hurry up at the doctor and then go to Pizza Hut like we had planned. Eating lunch out, after all, is the real reason Aaron was with me that day. At least that’s the real reason according to Aaron. Going to the lab was just another annoying delay in reaching his true objective. The Pizza Hut Buffet…oh, and Wal-Mart after that. We mustn’t forget the all-important Wal-Mart visit!

The next morning found us going down to the air base for yet another lab visit for Aaron. This time we were preparing for Aaron’s 2-year physical, so labs had to be done ahead of time for that. No matter that we were getting some sleet and snow – we needed to get this done. Aaron had resigned himself to no lunch out that day but instead I would take him to his day group on my way home. However, our van engine light came on, so I had to go back over to our side of town…run to our shop to ask about the light…and by then, I just decided to keep Aaron at home. Happy Aaron! A tiny bit frustrated Mom. And an even happier Aaron when he heard the words “Taco Bell” come out of my mouth.

On the following afternoon, the air base called to tell me that they had messed up on one of Aaron’s tests. We would need to come back and have more blood drawn. UGH!!! Fasting blood work, which would mean getting there in the morning. But the next morning I had to take Gary to his foot surgeon appointment. Gary, who still wasn’t driving due to his surgery.

I’m just scratching the surface of my life right now. And honestly, I’m not complaining. I’m just reporting. (Thank you, Alice Zwemke, for giving us that wonderful statement so many years ago!!). 😊

There we were on that cold Friday morning, back at the air base lab. Aaron was dreary and slow, tired in several ways. He pulled up his shirt sleeve without being told because he knows the routine so well, looked at his new watch perched halfway to his elbow the way he must always wear it, and slowly stretched as he waited for the tourniquet and needle.

“I’m tired of this,” he muttered in his resigned monotone voice.

There went my heart. I wanted to scoop him up in a motherly hug, but it wasn’t the time or place for that. Besides, motherly hugs rarely have a time and place in Aaron’s autistic world.

But I had another reaction as well. The depleted side of my spirit nearly kicked in. My thought was this:

“YOU’RE tired??! I’M the one who’s tired!!”

Yep. Those truly are the words that swarmed around in my head.

Tiredness has been closely following on my heels lately. Not just physical tiredness, although that is certainly present, but a soul weariness that has crept into my spirit.

All of us reach that point at some point.

“I’m so tired of ________.”

Then all of us can fill in that blank…or several blanks, right?

With Aaron, being his mother AND his caregiver, I am pulled this way and that.

Seizures. Autism. Medicines. Side effects of medicines. Weight loss. Low sodium. Needs to eat more. Needs to drink less. New medicines. New side effects. Blood work. Behaviors. Routines. Disrupted routines. Needing caregivers.

Sometimes I’m just so tied up in all of it.

And tied down to all of it.

Discouragement can sneak in unexpectedly. A comment. A picture. A thought. I can let it get to me in ways I know I shouldn’t.

Discouragement can roar in like a Kansas tornado. A seizure. A behavior. A disappointment.

What I do at that point with my discouragement is key to my frame of mind from that point forward.

I can nurture a heavy spirit, or I can let the Holy Spirit do His sweet work in my heart. I can’t change my situation, really, but I sure can work to change my attitude.

I do this through thinking more about my blessings than my burdens. No matter what, I do have so many blessings and it does my tired heart good to think about those instead of wishing for what isn’t.

Another thing that helps me is to go to my Bible, especially the Psalms. For instance, just read and hear the wonderful instruction and hope in these verses.

When I thought, “My foot slips,” Your steadfast love, O Lord, held me up. When the cares of my heart are many, Your consolations cheer my soul.

(Psalm 94:18-19)

It’s not a shallow pep talk. It’s listening to God Himself and trusting that He knows where I am and what I face…and He cares!

Then sometimes there are extra nuggets of love from Aaron himself – rare as nuggets of gold – that warm my soul and remind me of the value of this life that God has given me.

Not long ago, after some seizures and while we watched a show, Aaron looked over at me and surprisingly said:

“Mom, I’m glad you’re caring for me.”

He rubbed his hands together happily as he saw the smile on my face.

“I’m glad I’m caring for you, too, Aaron,” I replied.

And very, very glad that God is taking care of us both!

A Cow Up Close!

Our sweet friends, Bing and Lolly, lead our Life Group. At our last meeting, Bing was showing a picture of an adorable calf that was born just that day to the cow owned by his son and his wife. Troy and Nikki have a few cows, some goats, ducks, and chickens at their country home. And I must mention their beautiful Husky named Winter.

Aaron loves cows. We always look for cows in the various pastures that we pass as we drive around our side of town. So, I asked Bing and Lolly if it might be possible to bring Aaron to see Troy and Nikki’s cows, along with the cute little calf.

“Absolutely!” they said. So last Saturday Gary and I drove with Aaron the short distance to Troy and Nikki’s house for a little animal time. It was SO much fun to just watch Aaron relax and interact with the animals. Nikki was very patient and sweet with Aaron, helping him feed and pet the mama cow and the goats; pet a chicken; and watch Winter jump up high for a bone.

The precious little calf kept his distance but oh, he was just the cutest little guy!

I’ll let the following pictures do the talking.

Aaron really does love animals. He had such a good time!

And so did Gary and I. Moments like this are a gift to us that can’t be bought. They can only be experienced, and for that we are truly thankful.

Number 10 Song

I was already fairly saturated with Aaron issues when he and I walked out to the van this morning.

Him standing outside my bedroom door earlier, wanting me to come look at his bed – and me knowing what I would find.

“Aaron, is your bed wet?” I asked.

“Yes,” he answered. “And my pajamas. Come look!”

My day was already taking a track I did not plan.

Him saying he didn’t want to go to his day group today because of the Valentine party. No surprise there since he doesn’t like parties, of all things. Too noisy, says the loudest person I know.

Him wanting to take his wallet if he did go to Paradigm, even though he didn’t need money on a pizza day. I know his plan. Give money away if he can get by with it.

Him wanting to take snacks even though food was to be provided today. Again, his plan is to give food away even when he’s not supposed to do that.

There I was, redirecting and being level and not reacting and listening to him tell me that everything was my fault – including any possible seizures he said might happen today. I didn’t hear a seizure last night and he doesn’t act like he had a seizure, but he was laying claim to that possibility in an effort to stay home.

He finally came around and compliantly went to the van with me, where he immediately wondered where his CD of choice was. I had removed it earlier this morning along with a stack of others. Varying choices I offered were not acceptable as we sat there in the driveway.

Finally, I saw one! The Oak Ridge Boys Ultimate Collection! He had wondered only yesterday if we had any other Oak Ridge Boys CDs. We had just finished listening to the two that I remembered having, so this other one I saw laying there was a real find!

Or so I thought. Aaron was not impressed.

He mumbled something about the other Oak Ridge Boys CDs…and I knew what was going on here. He really wanted to listen to this third CD but not without completing his order of listening. I knew that there was no other choice but to go back in the house to get the two CDs that were in that stack I had earlier removed.

“Seriously?!” I thought as I headed in the house. “Why are you so…so…RIGID??!!”

I climbed back in the van, carrying the hopeful source of Aaron’s contentment. Then I learned that Aaron didn’t want to listen to both of the CDs again. He wanted…NEEDED…to complete the one that we had not finished yesterday. This must be done before he could begin the new CD.

“We were on number 10,” he flatly said as he pushed the CD in the slot and pressed the button until number 10 was on the screen.

Aaron visibly relaxed as number 10 song began to play. He was still and quiet, his hood pulled over his head and his gloved fingers entwined together.

I say this often, but Aaron’s world was made right in that moment. He seriously must finish the prior CD by the same artist before he can begin the new CD. I do not feel that angst that Aaron feels, but I will certainly feel his angst if I do not cooperate with his very ordered view of his world.

I can’t be selfish, tired and frustrated as I may be at that moment. Selfishness will only increase Aaron’s frustration and will lead to more conflict which will not in any way help our situation.

Aaron needs understanding. That’s all.

Oh, and a dose of love.

He doesn’t want hugs and kisses, gooey words and all that sort of stuff.

He wanted me to get the CD, and to not make him feel dumb for needing it. This is Aaron’s love language.

As we drove away, finally, the number 10 song was playing. It’s a pretty song, and suddenly my heart was very touched as I listened to these words:

“You’re always in my heart, and you’re often on my mind.”

My love for Aaron was being sung in that number 10 song. The tears trickled from my eyes, but I couldn’t let Aaron see me cry. My tears make Aaron very uncomfortable.

“I like that song,” I said as it ended.

“Do you want to play it again?!” he asked with excitement.

“Sure!” I happily answered.

My affirmation, on every level, was just what Aaron needed. But so did I.

Aaron is often on my mind for less than pleasant reasons. Worries. Frustrations. Anger. Dilemmas. Prayers.

But Aaron is often on my mind for happy reasons as well. Joy. Humor. Uniqueness. Thankfulness.

He is always in my heart, for all the above reasons.

He needed more than Skittles and a goofy love card this morning.

He mostly needed…and needs EVERY day…to know that despite my weariness and my worries, I get him.

Because I get him, I got his CD.

I liked the number 10 song.

That’s the BEST heart gift for Aaron…and for ME!!

Aaron’s Talking Points

I’ve been thinking about the fact that I don’t often write a blog where I just share some of Aaron’s sayings. His unique way of expressing himself is, after all, the reason I started this blog. Therefore, I hope to share Aaron’s Talking Points more often than I’ve been doing. Many of these have appeared on my HeSaidWhat Facebook page, but many of my blog readers haven’t seen them. So! Here goes!

Sometimes Aaron is very precise in what he says. For instance, he ordered a Top Sirloin steak in a restaurant one day. With a little prompting, he ordered it well done. Thereafter, and probably still today, Aaron tells everyone that he ate a “Top Sirloin Well Done.” He says it all together as if it’s one name, the name of his steak.

He wanted to buy some saltine crackers. We bought Zesta crackers, but to Aaron they are “Zesta Original Crackers.” That’s what’s on the front of the box, people! “Mom! I like those Zesta Original Crackers!”

So, yesterday Aaron looked out the window just as the mail truck pulled up in front of our house.

“MOM!!! The U.S. mail is here!!”

When I picked Aaron up from his day group, he told me about going to Quik Trip.

Aaron: Antoine took me to Quik Trip today!

Me: Good! What did you buy?

Aaron: I got hot dogs and coffee.

Me (thinking of caffeine in the coffee): What time did you go to Quik Trip?

Aaron: 3:06.

Does his precision make you smile like it does me?

Every. Single. Time. 😃😃❤️❤️

We woke up to a very foggy morning.

Aaron: Mom, when I woke up this morning, my window was blurry! 😀😀

Aaron would eat 7-Layer Salad every day of his life if I made it often enough for him to eat every day of his life. He was putting in his order for his special meal tomorrow, and of course 7-Layer Salad was on his list. I told him I wasn’t sure if I was making that tomorrow. He thought about that for a few minutes.

“Mom,” he finally said. “I know what you can do. You can start the boil of the eggs in the morning!” 😀😀

Aaron, after checking last night to see if NCIS Los Angeles was on TV:

“Mom! It’s not on! The 62 Granny’s Award Show is on!”

Yay for 62 Granny’s getting awards!! 😂😂

Would you like a little pizza with your cheese, Aaron? 🤪😄😋

Aaron has a friend at his day group whose heritage is Korean (I think). He was talking about her today, trying to tell me her nationality and having a hard time doing so.

“Mom? What’s that Chinese thing that starts with a K?”

We’re having bad weather today, including storms with lightning. Aaron is always concerned about the lightning hitting his computer so he asks and asks if he should turn off his computer. He also likes to look at the radar on my phone. He is his mother’s son!

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 earlier this morning, 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?!”

Aaron: Hey Mom, can I have some of that sparkling grape juice? You know, the kind that looks like it’s in an alcohol can. 🤣🤣🤣

Aaron wants more of the sparkling grape juice tonight. He wants to be sure I put it in a clear glass so he can see it. And he’s still loving that bottle.

“It looks like an alcoholic bottle in a bar!”

Should I be worried? 😁 😁

“Mom,” he finally said. “I know what you can do. You can start the boil of the eggs in the morning!”

I’ll end with a cute picture of Aaron and our neighbor’s cat, Moe. And trust me, I’ll be back with more of Aaron’s words!

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.

	Patty hesaidwhatks on Aaron’s Talking Points
	Cindy Dawson on Aaron’s Talking Points
	Patty hesaidwhatks on Aaron’s Talking Points
	Patty hesaidwhatks on Aaron’s Talking Points
	Patty hesaidwhatks on Aaron’s Talking Points