October 2019 – He Said What?!

A Sweet Touch from God

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

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

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

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

Sigh.

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

OK. Moving on.

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

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

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

Still, no seizure.

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

And still, no seizure.

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

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

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

We went from this:

To this:

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

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

The spooky:

And the sweetness:

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

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

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

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

Keeping Everything in A Row

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“YES!!” he said, “there’s the 2003!!”

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

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

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

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

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

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

And his thread balls!

Of course!

Throw ON the Towel

Written a few years ago, but this truth bears repeating:

Here we go again. I heard it from upstairs…….the sound of the plastic containers full of coffee hitting the floor and then the thump. My heart sank as I hurried downstairs to check on Aaron. He was fine, although sprawled on the floor with spilled coffee all around him. He jerked and dropped his coffee yet again………lukewarm coffee, thankfully. And thankfully he didn’t throw his coffee containers as he has been known to do when he’s in a rage. This was a true accident, but messy and discouraging none the less.

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I was frustrated with Aaron this morning over a couple things already and this didn’t help, believe me. My compassion for him still hasn’t quite kicked in yet. He has cleaned up and showered, and seems to be fine. I hope he’s not bruised.

I just stood and looked at this mess………coffee all over the floor, the cabinets, on and under the frig. UGH! And I thought of how many times I’ve just felt like throwing in the towel. We all do, don’t we, whether we are parents or not. But we can’t quit. God doesn’t and we can’t. Especially as parents……….these children are given to us by God and He wants us to hang in there despite how tough it sometimes is.

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So instead of throwing IN the towel, we throw ON a towel. We clean the messes up step by step, bit by bit. We’ll see progress one day, even if it’s slow to come…………even when we just stand there and don’t know where to start. God gives patience; and God gives us the same grace toward our children or others that He has extended to us. We clean up the messes, whatever they may be, and we push forward.

The rest of the day is before us. It’s up to me now not to mess up my reactions and my attitudes. I’ll need to grab another towel if I’m not careful!

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Fixing the Broken

Last night I felt like this:

Mangled. Broken. Greatly in need of repair.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“It’s 7:41,” he flatly continued.

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

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

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

But it was good. Very good.

It was our normal.

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

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

But I also know that we’ll have this:

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Thanks to God who fixes our broken!

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

Whose I Am

I read this once: “It’s not who am I but WHOSE I am.”

Honestly, in the past, I’ve gotten very caught up in the ‘who am I’ part of life. I could list all sorts of ‘who am I’ things in my life…all good things, but still my heart was often about ‘who am I.’ When those things were gone, God gently began to show me, through my pain, that what’s more important is ‘WHOSE I am.’ I belong to Christ, and He was the one who was washing the dirty feet of the disciples.

What God wants is our service, not our accomplishments. And service is usually low-key and humbling. Just some thoughts today. Oh, and if you think you’re not ‘doing’ enough, think again. Say a prayer, send a card, give a ride, share a hug…serve.

“So, whether you eat or drink, or whatever you do, do all to the glory of God.” (I Corinthians 10:31)

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Cool Aaron

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Well!!

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

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

“I like you, Mom,” he quietly said.

“I like you, too, Aaron,” I affirmed.

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

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

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

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

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

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

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

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

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

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

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

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

Aaron Moore is cool.

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

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

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

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

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

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He’s cool when he’s playing a trick.

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

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

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

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

Aaron Moore IS cool!

Of No Use?

Our neighbors across the street from us had a yard sale a couple weeks ago. Aaron loves yard sales! He REALLY loved the fact that there was a yard sale right across the street! He asked if we could go over and check it out to see if there was something he could buy. I agreed, knowing that he would end up over there anyway talking to Derek and Gina until I came to the rescue and escorted him home.

Before we left, I remembered that in my wallet was an envelope that held Aaron’s remaining Christmas gift money. I was always forgetting it was there! I looked inside and pulled out the cash. Aaron had $5.00 to spend, and he was happy.

It didn’t take Aaron long to spy exactly what he wanted. A lava lamp!! Aaron LOVES lava lamps and has been through several over the years. He has a glitter lava lamp in his room now, but this was a good old normal lava lamp. Aaron knew he had found his yard sale prize!

We looked at the sticker and guess what? It was priced at $5.00! Could it be any more perfect? We crossed the street with the “new to Aaron” lava lamp, carried it up to his room, placed it on his already crowded nightstand, plugged it in, and went about our day.

Aaron was waiting, though, for the level gunk in the lamp to begin bubbling. As he went about the remainder of the day and evening, he kept glancing at his lit lava lamp. There was no motion, however. The gunk was still.

“Mom!” Aaron finally said. “Do you think I bought something that is of no use?!”

I turned my head away so I could smile at his phrasing. He’s just so funny sometimes…so precise.

“No, not at all,” I responded. “The lamp just takes some time to heat up the goo inside.”

Gary got home and Aaron happily showed him his new lava lamp…his still not-moving lava lamp. Supper came and went, as did evening chores and Wheel of Fortune and watching our DVD show just before bed.

As Aaron got into his bed, he sighed with exasperation as he looked at his boring lit but not bubbling lava lamp.

“I think I bought something that is of no use!” he sadly repeated as he pulled his covers up. I was beginning to wonder myself if the lamp would work even as I told Aaron that it just needed more time.

No one was happier than me to walk in Aaron’s room the next morning, his coffee in hand, and see the lava lamp bubbling in all its globby glory!! YAY!!! Yay for Aaron…yay for me…and a special yay for Derek and Gina, whom I was afraid would have certainly heard all about the lava lamp that was of no use!!

Aaron was happy, happy! And every day since then, when he returns from his day group, he plugs in the lava lamp, totally enjoying the goopy bubbles in all their various shapes and sizes!

Last night, Aaron went to bed talking about how he was going out to eat lunch the next day with a group from Paradigm – his day group. There is nothing Aaron loves any more than eating out. So, this morning I wasn’t too surprised to hear him stirring early. How early? Aaron keeps a logbook like this:

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This morning’s time was:

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He had so much to look forward to today! He was ready to get this show on the road! He supervised me as I poured his coffee and carried it to his room, then told me he would shower and dress. I went back to my quiet time desk, but it wasn’t quiet for long.

Aaron was soon standing behind my chair, his shower completed and his impatience growing.

“Mom,” he ordered. “Take your shower and put your make-up on so it will become 9:00!”

I soon realized that Aaron’s hurried mood wasn’t going to improve until he saw me making some headway concerning my shower and make-up. But I also realized that Aaron’s eyes were very droopy, and his mood was changing even further from excitement to not feeling so well. He told me his head hurt, his stomach hurt, and that he felt like he was having a dream. We’ve learned that this often means a seizure is coming. Aaron was ready to go back to bed, and sure enough I soon heard on the baby monitor the unmistakable sound of a seizure.

I never like Aaron’s seizures, of course, but I especially detest them when they keep him from doing something that he’s looking forward to so much. No eating lunch out today for Aaron, I thought. Bless his heart!

And my heart? My mama heart takes a beating every time I watch Aaron going through this hard part of his life. He handles all this much better than I do, thankfully. But as I looked down at Aaron when I checked on him later, look what was in the background.

The lava lamp. Aaron’s lava lamp, that he worried was of no use, was performing perfectly there beside Aaron in his bed.

And it hit me. How easy it would be for me to wonder about all the why’s of Aaron’s seizures and autism…to even feel like it was all sadness and of no use. But never, never have I felt such hopeless thoughts. Even in the changed path of Aaron’s life…changed from what we thought our firstborn son’s life would be…there is the sure hope that only God can give.

You see, knowing and following Christ gives to me and to Gary and to Aaron the same hope that God gave to Jeremiah to share with the Jewish nation centuries ago.

“I know the plans I have for you,” declared the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.” (Jeremiah 29:11)

I can claim that promise for us and for Aaron today because we know that God! We know that He has told us in Romans 8:28 that “ALL things work together for good to those that love God, who are the called according to His purpose.”

God doesn’t plan to hurt us! He plans to work for our good in order to conform us to Christ! We have a hope in Him and a future beyond anything we can imagine!

So you see, all the tough times and the sadness and the unanswered questions we may have do NOT mean that this life is of no use. Absolutely not!! This life is working perfectly, just how God intended, and in that knowledge – in God Himself – I can trust, and I can rest.

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	Patty hesaidwhatks on The Fringes