Month: April 2016

A Nightmare and a Flower

3:30 a.m.  I heard Aaron stirring, then walking up the hall to the bathroom.  He closed the bathroom door with a thump because he never, ever closes doors quietly.  Soon the bathroom door opened, but instead of walking back up the hall to his room I heard our bedroom door open.

“Mom?” Aaron said in as much of a whisper as he can ever muster.  Whispering seems to be a lost art with him. 

“Mom?” he repeated.  I answered him and he continued.

“Can you come to my room?  I need to talk to you about something.”

So I followed Aaron to his bedroom, where he wanted to turn on the light so that he could talk better. 

“Mom.  I had a nightmare.  I dreamed that you and dad made me go live in a support home because I was mean.” 

So that would explain what I had heard him speaking in his sleep earlier……something about wondering if someone would come up to his room to see him.  We talked about his nightmare, as he called it.  He has such a fear of ever having to leave our home.  No matter how we approach that subject it never goes over well.  But we hadn’t talked about it at all the night before, or even at all recently, so I don’t know where the dream came from.  But it greatly bothered Aaron, enough for him to call it a nightmare. 

We talked for a few minutes and I assured him that everything was fine, and not to worry about us making him move because he was mean.  But it is important not to be mean, I had to add.  And with that I made sure he was all the way in his bed, said goodnight, and turned off his light.

He was up before 8:00.  He walked into the kitchen looking a little worse for wear.

“Mom,” he immediately said.  “I don’t feel good.  My head hurts.  I feel weak.”

I tried to encourage him, but finally he brought up the real issue of the nightmare.  He decided that this awful experience should earn him a day off from Paradigm, but he saw right away that I disagreed.  I exuded cheerful optimism, which he tired hard to override with his dreary post-nightmare pessimism.  We were in that familiar tug-of-war. 

A shower and three cups of coffee helped a little, but Aaron had decided that he was not going to Paradigm.  I always leave the final choice up to him, but he knows the consequences of not going.  I told him that we would run down to get him a haircut, which he loves, but after the haircut he was still pretty firm about staying home.

I agreed to take him home and then told him that I was running my errands.  After that, I said, I would be busy all day getting ready to leave tomorrow on an out-of-town trip for Gary and me.  By the time we pulled into our driveway, he was happier and I was on the phone.  He opened his door and in a flash, my door opened and there stood Aaron……holding something for me.

“Here, Mom!” he tried to whisper.  “I picked you this flower.  I picked it because I love you and I’m going to Paradigm.”

Then he handed me the flower, bent over to lean in the van, and gave me a HUG!!

You could have blown me away!!  Kind of like the little seed pods on the flower he gave me.  You see, his “flower” was this:

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But he was as proud of this old dandelion as he would have been if he was holding a dozen roses.  And trust me, I was too!  This bent over, half bald seeded dandelion was what Aaron saw first and so pluck it he did……for Mom!

After I got off the quick phone call, I thanked and thanked Aaron for the flower.  He just beamed.  He got his glasses and his watch and his wallet, and off we went to Paradigm.  I think his morning there was a little tricky, but the rest of the day seemed to go well. 

It’s a good thing I don’t have allergies, because I’ve kept my special flower in the kitchen all day.  It’s nothing spectacular, but it’s the best Aaron had.  It would have been understandable for me to not want this sad sample of a flower.  To maybe throw it away when Aaron wasn’t at home. 

But I keep thinking about how the best Aaron had to give me was…..well…..not what we would call great, but it was from his heart and that makes it totally awesome.  That’s so often what Aaron does and is, all through the days of his life.  We may not get exemplary behavior every day…..we may not see stellar progress on most days…..we may not even take the time to notice how hard he tries on other days.

But for Aaron, it’s there.  His attempts to fit in, to express himself, to understand this world we live in with him, are there.  Some days the best we get is for him to ask if I’m happy that he didn’t make “farting noises” with his mouth in the store, but he made “meow” noises instead.   Or that he didn’t clap SUPER loud or clap too AWFULLY many times.  Or that he didn’t get 10 toothpicks at the welcome counter at the restaurant…..only 4! 

He so wants us to be proud of him.  He so wants to conquer his inability to communicate what’s really on his mind…..what’s really bothering him……what’s in that heart of his.  But it’s just so nearly impossible sometimes for him to do that……to talk like you and I do.  He might react, like he did this morning.  He might hit or slam a door or be defiant.  But I’m convinced that part of the frustration that Aaron feels is not that he’s mad at the situation….he’s mad at how very hard it is for him to identify and express to us just what he’s mad about. 

So whatever he is able to share, we must take it gladly and try to understand.  We must grasp what he hands us and take care to handle it well.  Just like my dandelion flower.  Would I have chosen it?  No.  But Aaron did, and with it he showed me his love.  To me that gangly old dandelion is beautiful.  It represents Aaron’s heart. 

I hope that when he sees it sitting on the table, or maybe later in a vase, he’ll know that Mom not only loved his gift……he’ll know that Mom loves HIM. 

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The Rewind

I was driving on Kellogg this morning, Aaron beside me and a favorite CD playing.  A new song had just started.  As we drove slowly in the construction area, Aaron saw that a policeman had pulled a car over.  The policeman’s lights were flashing, so it grabbed Aaron’s attention.

“Mom, look!” Aaron said.  “That policeman caught someone speeding.”

“Yes, he did,” I replied.

Aaron then leaned over and pushed the button on the CD player that made the just-begun song start over.  This is nothing new.  Aaron does it all the time.

“I didn’t hear the song,” Aaron informed me.  “No more talking.”

“Well, I wasn’t the one doing all the talking.  You were,” I muttered under my breath.  Aaron didn’t hear me, which was a good thing or he would have punched the button to start the song over for the second time.  I felt better, though, verbalizing my feelings out loud even just a little bit.

In the Aaron imposed quietness on our way to his day group, I thought about this rewinding business.  Aaron does it all the time.  If we’re talking……and it’s usually if Aaron is talking……he will finish what he is saying and then rewind the current song.  If it’s a song I like, then I enjoy the rewind.  If it’s a song I don’t like, then the rewind can get irritating, but I endure it anyway to make Aaron happy.  Such is life.

There are some recent moments with Aaron that I would like to rewind.  Some of the moments I would rewind because I would take a different path, perhaps, in handling an attitude with Aaron.  Like last night during our game of Skip-Bo……

Paradigm sent a new form for me or Aaron, one or both, to sign.  This is a one-page form concerning the responsibilities of the person served, which would be Aaron.  I can just read the form and sign it as Aaron’s guardian.  But I felt that Aaron should know what it said.  He could read it himself, but I also felt that my reading it to him would have more impact and that I could also explain anything that he wasn’t sure about.

I was wrong.

I explained the paper to him as we started our Skip-Bo game, and read number 1.  I read number 2, and just then Aaron said, “NO!”

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I was surprised, Aaron was agitated, and no amount of urging would make him agree for me to continue reading the rest of the form.  I believe that Aaron sees these responsibilities as things that are often next to impossible for him to perform.  He becomes almost scared, which presents itself as anger.  Aaron was not very happy for the rest of the game.  He carried this angst over to this morning, not wanting to go to Paradigm.  And also not wanting to take in the offending unsigned form.

“I’m NOT signing that paper!” he angrily told me.  I hadn’t even mentioned it.  But Aaron did go to Paradigm.  He wanted me to go talk to Barb, so we walked in together and Aaron immediately told Barb that he was NOT signing that paper!!

Anyway, I will get the paper to Barb, signed only by me.  And I wished I could rewind my decision to read the responsibilities to Aaron during our usually fun game of Skip-Bo. 

Then this morning on our way to Paradigm I told Aaron that we could stop in Dillon’s to get him a salad.  He was happy with that thought.  We stood at the salad bar and right away Aaron stuck his hand under the hood, barely touching some lettuce with his fingers.  I fussed at him and quickly scooped that lettuce into his container.  I was doing a good job of managing his portions but then I saw a friend.  I was asking her some questions about her son who has some medical needs, holding Aaron’s salad in one hand……but he managed to squirt half a bottle of dressing on it and then add two huge scoops of onions.  I bet he’ll feel good tonight.

Aaron didn’t want me talking to my friend, though, and so in front of her he said, “Mom!!  Don’t talk to a woman!!”

There again I wish I had that rewind button and could start that whole scene over again, hopefully with a less than embarrassing outcome.

His comment to me was kind of funny, kind of not, but is so typical of moments with Aaron.  It doesn’t bother him one bit to say or do the most awkward things in public.  So whether it’s at home or whether it’s out there for others to see, there certainly are many moments that I would like to rewind and start over. 

Yet there are also many moments that we hold dear…..moments that we wouldn’t change for the world. 

Look at him and Rosa a couple weeks ago after eating out for her birthday. 

 

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Aaron was ready to go home, you can tell.  He came, he talked (a LOT!), he ate, he got his toothpicks, he saw Rosa, and he was done.  But it was sweet, as always, to see Rosa’s delight when she came in the door at Chili’s and when she gave me a hug.  A hug!  That was awesome!

Aaron hit one of his friends at his day group recently.  On his own, he wanted to write her an apology on a card.  He picked the card out of my card box and wrote his own note.  It took him a couple days to get up the nerve to give it to Stephanie, but he did…..or so he told me.  That’s another moment I would not rewind.

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We can learn from all the moments we have with Aaron.  Some are just more fun than others.  Yes, Aaron will always, always, always put way too much chocolate syrup in his ice cream.

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But he will also turn around and always, always, always make me smile as he tells me a story and rubs his hands together in delight, his own smile on his face.

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Aaron is who God made him to be.  Yes, living this life can be wearing and tiring, as my friend Joyce messaged me last night.  She called me a “fellow mother on this very strange road.”  I love her honesty, because some days our road is indeed very strange.  Yet listen to what else Joyce said:

“It’s down to taking one day at a time and realizing that this is God’s story that I am in, not my story that happens to have God on the sidelines.” 

God’s story.  His story doesn’t have rewinds.  He is right here in the midst of designing our story, writing each word.  He’s not on the sidelines just watching us cope.  Nope.  He’s writing every chapter, every word of every song……for all of us.

So when I want to push the rewind button, I know that instead I need to listen closely to what God is saying and to what Aaron is teaching me. 

Be quiet, Mom, so we can listen to the song!

 

 

 

 

Lessons From the New Roof

When we moved into this house, it had a shake roof. An old shake roof, weathered and beaten. At least it looked weathered and beaten, but it passed the house inspection. Gary kept a close eye on it for the following years, especially after every hail storm. He patched a place here and a spot there. The roof held, though, so we were thankful for that and went on with life under our shake roof.

One day, though, we saw an ugly spot on our bedroom ceiling. It was a water mark, without doubt, so we had no doubt that our shake roof finally had succumbed to the latest hail or wind storm and needed to be replaced. The insurance adjustor came out and looked everything over, including the water mark on our ceiling. However, he said that the roof generally looked fine so he would recommend that the insurance pay to repair some individual spots that needed new shake shingles. We were disappointed, but what could we do except leave the decision in the hands of our insurance company.

On a Saturday morning as Gary and I worked outside, the phone rang and so Gary stood in the garage talking. I could tell that it was our insurance company, and I could also tell that Gary was happy about whatever it was they were saying. He hung up and told me the good news. Our insurance company had decided to just replace our entire roof! And not only to replace it, but their policy was to give the owner the price it would cost to replace the roof with the same kind of roof. Now a shake roof is expensive. Gary and I had decided that we wanted, someday, a composite roof, for many reasons other than price. Gary told our insurance man that we weren’t getting a shake roof, but he said it didn’t matter. Policy was policy, so we were given more money than we needed for our new composite roof. Wow! The extra money went toward a much needed bathroom remodel. We were so thankful for this extra blessing! We got a new roof and a new bathroom to boot!

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I’ve been slowly reading through the book of Nehemiah. This morning as I started the last chapter of this wonderful book, a phrase just jumped out at me. The people of Israel were reading aloud to the assembly from the book of Moses. They were reminded of how the Ammonites and Moabites, many years ago when the Israelites were in the wilderness, had treated God’s people so badly. In fact, the king of Moab had paid their prophet Balaam to speak a curse against the Israelites. Perhaps the best known part of this story is about Balaam’s donkey, whom God spoke through to Balaam. It’s an interesting and funny story from Numbers 22. But what was so meaningful to me today was that little phrase in Nehemiah 13, at the end of verse 2, as the people were reminded of the story of Balaam.

“HOWEVER, OUR GOD TURNED THE CURSE INTO A BLESSING.”

What a precious reminder these few words were to me today! So many times we have things happen to us that seem to be a curse, in a sense. Hard things……difficult to understand on many levels. Things out of our control, like the hail and the wind that beat on our old roof. And even when we might see some reason or make some sense of it, the answers still don’t fully come. We may get a small amount of partial relief here and there, but not really be able to escape the pain and the mess that we find ourselves confronting.

Paul reminded us that “all things work together for good,” though. He didn’t say that good things happen all the time. They don’t. But whatever does happen to us as believers is under the sovereign allowance of God, and we can be sure that it WILL all work together for good. We may not even see the good this side of heaven, or feel like any of it is working out for good at all. But God has His policies, so to speak……just like our insurance company. And His policies are clearly stated: He WILL turn a curse into a blessing!! He WILL work all the things in our lives out for GOOD!!

Someday, even if it’s not until heaven, we WILL be able to look at all the stuff that has happened in our lives and then voice that big “HOWEVER!”

HOWEVER, OUR GOD TURNED THE CURSE INTO A BLESSING!

Don’t lose hope! Don’t lose focus!

God comes through on our side, for our good, every single time!!

 

 

The Wonder of Me…..And Aaron…..And Lots of Things

I went to pick Aaron up at his day group on Thursday afternoon. I waited in the van for a couple minutes, then saw Barb coming toward me. I knew before I really knew that this probably wasn’t going to be good news. I was right. She told me that Aaron was inside after having a very rough afternoon and that he was refusing to come outside. I went in and we found Aaron laying on one of the couches, crying and very upset. After some time, and moving to a new couch where he laid down again, he told the story of how he had acted……which often starts with him thinking he’s teasing but turns ugly pretty quickly. One thing led to another and the situation became something it never needed to be.

How we wish that Aaron understood that his idea of teasing is often anything but. How we wish he could control himself when he is being redirected. All the talking and lectures and therapy in the world doesn’t seem to sink in. Maybe a little, but not as much as needed. He just doesn’t connect actions and repercussions like you and I do. Reading about the autistic brain……writing about the autistic brain…….saying that I understand the autistic brain as much as I can…….often doesn’t mean as much as it should when I’m staring at my belligerent son, hearing of his actions and trying to control my own embarrassment and anger.

Aaron is often immensely funny, but Aaron is also sometimes immensely frustrating. Thursday fell into the last category.

Aaron is seeing a family therapist every two weeks. This is a new thing for him. I had high hopes that as much as he loves to talk, he would really take to this and love talking to her. It hasn’t quite worked out that way. If she just let him talk about his things, like aliens and movies and games and eating out, then he would probably look forward to it. But he realizes that she wants to talk about his issues……how he’s doing at Paradigm and at home with relationships and anger and attitudes. To Aaron, this is uncomfortable and a waste of time, so he hasn’t been enjoying their sessions like I had hoped.

This past Tuesday she gave him a paper on which she had drawn a large stoplight. The green light means that he is doing good, so keep going. The yellow light means that he is starting to feel some frustration, so he needs to be cautious. The red light means that he is having a meltdown full of anger. At the end of the day, he is to mark what kind of day he has had…..green, yellow, or red.

Aaron didn’t want to take the paper home from her office. Then he told me several times that he thought the paper was stupid. I left it alone on Tuesday night, but on Wednesday night I told him before bed that it was time to mark his stop light with what kind of day he had. I felt like Wednesday had been a green day, so I thought he would be happy to mark the green light. But when I told him to get his paper and mark it, he crossed his arms and told me that he had hidden the paper.

Oh boy.

After some talking, he finally got down on his hands and knees, and pulled the paper out from under his bed. He rolled his eyes as he put a mark on the green light, the mark I thought would make him happy. Then he picked up the paper and as we stood there talking before saying good night, he crumpled that paper some in his hand. He was simmering, I knew it.

So after his meltdown Thursday at Paradigm, and a rather rough evening at home during Skip-Bo as I tried to talk to him, he went upstairs at my direction and brought down the stop light paper so that he could mark it. I knew that he needed to put a mark on the red light, and he knew that, too.

He came down to the kitchen table with his paper, and this was what he laid on the table.

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Well, so much for that idea. How many times I say that when we try something new with Aaron!

So often it’s back to square one with Aaron. We rarely feel like we pass go and collect our $200.00. I know there are times in his life when he needs to pull back and reboot, so on Friday I let him stay at home. He went grocery shopping with me, helping me at the store and helping me carry in the groceries at home. We went to see Jungle Book, run more errands, and get him a sub for supper. We watched a little TV in the evening. It was a pleasant, fun day for both of us.

Aaron found an Elvis CD that he wanted when we were shopping together at the first of the week. He’s been completely fascinated with the songs and with Elvis all week as we’ve listened to the CD while driving. He’s been hilarious with some of the things that he has said about Elvis, like how his voice is “jiggly” and his dancing is “rowdy.”

So on Thursday, meltdown day, Aaron turned on the Elvis CD in the van. The second song that played just left me pretty stunned and with a huge lump in my throat. “The Wonder of You.” Look at the lyrics for the first part of this song:

When no one else can understand me.

              When everything I do is wrong.

              You give me hope and consolation,

              You give me strength to carry on.

 

              And you’re always there to lend a hand

              In everything I do.

              That’s the wonder, the wonder of you.

 

Aaron has decided that he loves this song. It’s uncanny. This song that speaks volumes to me about what kind of mother I need to be with Aaron has become a very special song to him as well. It’s not for the reasons that it’s meaningful to me, either, because I’ve had him tell me why he likes it so much. But he’s played it over and over since Thursday. We even listened to it with Gary at supper last night.

I really do want to be this kind of mother in Aaron’s life. Sometimes he’s certainly hard to understand and he does a lot wrong, but I pray that I will give him hope and consolation, strength and a helping hand.

Honestly, many times, I don’t feel like I’m a wonder. I feel more like I’m left wondering…..wondering what to do, wondering what’s going on, wondering how I can stay calm…..

I could go on for a long time about some of the ways that I wonder.

But Aaron needs me to be there for him despite the wondering and the frustrations, the tiredness and the seeming dead ends that we end up taking. He’s taking a nap right now and just had a seizure. He needs me physically, too.

But he needs me the most when, like the first part of the song says, no one else understands him and everything he does is wrong. I know he’s frustrated by those times more than we are.

All moms can relate to what I am saying, and especially moms of special needs kids and adults understand it all too well.

Aaron will probably never look at me and say, “Wow, Mom! You’ve meant so much to me. You’re a wonder!”

Just reading that makes me laugh. I’d faint if he said that and probably get hurt, so it’s just as well that he doesn’t say it, right?

But I will keep striving to BE that in Aaron’s life…..pick him up, understand as best I can, hold his hand (figuratively speaking, because he doesn’t hold hands much ), and give him strength and consolation.

But trust me, I know me, and I know that at the end of some of our days I’ll still be saying, “Yes, I’m a wonder! I’m a-wondering how on earth we both made it to the end of this day alive and in one piece!!”

And tomorrow’s a new day!

             

Lessons From the Threatening Storm

Let’s keep our eyes on the One Who sent the storm and trust Him for the outcome.

He Said What?!

Gary and I are preparing for a huge backyard project that requires us to remove our fence. Gary doesn’t have much time for this kind of outdoor work, so the extended daylight in the evening has been a help. All day yesterday the weather was perfect, though a little windy. Yet I was reading on the weather information on-line, or hearing on the local news, that we might get some storms in the evening. You’d never know it to look outside, I thought. Such a sunny day it was!

Gary came home from work and we sat down for supper, as we always do. This time together is very special – time to enjoy dinner, talk about our day, and just relax with each other. But looking outside, we noticed some gathering dark clouds on the horizon. A few minutes later we heard a low, distant rumble of thunder. Knowing…

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Monopoly On a Scrabble Board

I have a dear friend, Joyce, who has two sons with special needs. They each have significant special needs. Joyce is someone that I admire very much. I know she couldn’t handle all that she does apart from God’s grace. One day over lunch, she said the most profound thing to me. We were discussing some of the unusual ways that our boys function in their daily lives, and how we must function as their moms.

Joyce said, “It’s like playing Monopoly on a Scrabble board.”

That’s just one of the best descriptions I have ever heard about living with a child with autism, or many other developmental issues.

How on earth DO you play Monopoly on a Scrabble board?!! At first glance, I might say that you DON’T!! But as parents of our special children, we must. We have to be creative……flexible……think outside the box……and be very patient when all the pieces just don’t fit.

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The bottom line is this……we just don’t have a choice. So we take the Scrabble board and figure out our version of Monopoly, often writing the rules as we make the plays……and changing the ones that don’t work.

Aaron has been doing so well lately that I’ve felt like I’m mostly playing Monopoly on a Monopoly board. Imagine that!!

Oh, we always have our Aaron moments because that’s just how it is. But he’s been unusually happy and kind lately, both at home and at his day group. He’s even wanted to help more around the house, including in the kitchen.

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There are mornings that he hasn’t wanted to go to his day group, just like we don’t always want to get up and face our day. One morning he was getting upset about having to go to Paradigm, saying that he just doesn’t have a good time there.

“But Aaron,” I countered, “every time I pick you up, you say you had a good time.”

Not missing a beat, Aaron replied, “Well, the next time you pick me up, I’m gonna say I DIDN’T have a good time!!”

So there!!

He didn’t see my smile as he huffed out of the room. He ended up going that morning and having a good day, by the way.

This past Friday, however, was just the reverse. He left the house happily. We enjoyed listening to our oldies on the way to Paradigm. He was looking forward to some shopping and pizza at the end of the day, after I picked him up.

I pulled up to Paradigm and saw him sitting outside with his friends. His face was red and he was minus his glasses. I just knew…..and I was right. It had been a meltdown day for Aaron, and who knows why? He had broken his glasses….again…..but thankfully this time I was able to pop the lens back in. His staff was talking to me as Aaron sat in the van beside me, red faced from crying. So instead of shopping we just went to get his pizza and then head straight home, where we continued to sort out what had happened. His behaviors were wrong on several levels, and dealing with it would take a long time, I knew.

Hand me the Scrabble board.

And that rule book that I’m working on, continually.

Yesterday we took a walk in Swanson Park, stopping at the recycling bins on our way. The bins were full, so we couldn’t drop our things off then. We enjoyed the park, the fresh air and sunshine, and the deer that we saw. Aaron had a good time, despite complaining of a sore throat.

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Last night at bedtime I told Aaron that we might get some rain, and maybe some thunder and lightning. Aaron loves rain and he loves storms. He followed me up the hall after I delivered the hopeful storm news to him.

“What time?” he asked.

I told him that I didn’t know what time the rain or storms would come, but that if it happened, it would be later. As in not this very minute.

“Like when?” he asked.

I repeated that I didn’t know just when.

“Will it be later?” he continued asking.

Deep sigh……which he totally didn’t notice.

“Yes,” I affirmed. “The rain and possible storms could be later.”

I hoped to finally be finished.

Aaron followed me still.

“So we might not hear it?” he wondered.

The Scrabble board! Where’s the Scrabble board?!

Today Aaron is home with his cold. He is home with me, snorting because he doesn’t blow his nose.

I am re-reading the Monopoly on the Scrabble board rules about patience.

I was in the bathroom. Aaron stood on the other side of the door, happy because he had asked if we could try the recycling bins again. I had said yes, and had also told him that we would run an errand as well while we were out. Aaron sees all sorts of possibilities in the word “errand.” Most of which are in the form of food.

So there he was outside my bathroom door.

“Mom?” he began. “Are we going to recycle?”

“Yes,” I answered. “I said we’ll run an errand and do the recycling later.”

“What do you mean later?” he asked.

I wilted a little.

“Just later,” I replied.

A moment of silence.

“So what time?” he asked.

A Scrabble board in every room is what I need, with all the Monopoly pieces. Certainly in every area of life with Aaron.

 

 

This Is My Friend

Years ago a visiting couple walked into a local church here in Wichita, sliding into a pew near the back. Having a long history of working with special needs, the husband was amused to see a young man sitting in front of them with his grandmother……a young man with special needs.

“They follow us everywhere,” Scott whispered to his wife, Atha. They chuckled, and after the service Atha struck up a conversation with this grandmother. Of course she did. That was classic Atha, friendly and warm. And this grandmother couldn’t wait to find me.

“Patty!” she said. “I met a couple who were visiting here for the first time. They have a background of ministry with special needs. I’ve got to introduce you!!”

So at the first opportunity, she did just that. Atha and I talked and talked the first Sunday that we met, making plans to get together soon for a coke and more conversation. We met at Spangles one afternoon soon after, and as they say……the rest is history. We clicked. We understood one another. We were on our way to a great friendship.

Over the next couple years, Atha achieved her life’s dream of being awarded her PhD. I was so proud of her, though I had gotten in on the action late in her life and late in her dream. It was only as the years went by that I learned more and more of the sacrifice and grit that went into Atha achieving this goal. She had put this part of her life on hold as she mothered their three children, but all along she was very active in the world of teaching special needs and writing Sunday School curriculum for special needs for the Southern Baptist Sunday School Board. She taught students; she taught teachers; and she taught me.

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Atha taught me lots about special needs as we worked together trying to establish that ministry in our church. She taught me lots about how to teach students with special needs. She taught me lots about my own son, Aaron, although she was always quick to point out that I was the expert when it came to Aaron.

But what Atha taught me the most was what it was like to have a friend who loved unconditionally…….who stuck with me through good and bad…….who was there for me no matter how busy and complicated her own life was.

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Her phone calls were regular and so welcomed, no matter what all she had on her to-do list. Our lunch dates were refreshing to me on so many levels. And every June we made sure that on our schedules we placed a very important lunch date……one at which we celebrated our birthdays. Atha’s birthday was June 15 and mine was June 18, so we would try to celebrate close to both of those dates. I would pay for Atha’s lunch, and Atha would pay for my lunch, and we would laugh and laugh.

 

Atha took my family as her own. Not only did she take Gary and our children into her heart, as did Scott, but she also grew to love our extended families. It didn’t matter that they were clear across the country in the mountains of West Virginia and North Carolina. She grew to know and love each one as if she had been a part of their lives forever.

Atha loved human beings and the stories that each person carried. She loved telling stories….she loved hearing my stories…..and she loved all the stories of the hundreds of people that she took the time to know and care for over the years.

A favorite quote from Atha tells so much about her: “Successful leadership begins with how you treat others. I challenge you to find time to be kind today.”

Atha definitely followed her own advice. No matter how busy she was as she worked to start her ADHD coaching business; taught college courses in multiple places; conducted seminars for teachers; and so many other activities……she still had time for those phone calls and visits. Time to keep in touch with me, to love me, and to be there for me no matter what. To teach me one of her most unforgettable lessons – to be established in my purpose.  https://hesaidwhatks.wordpress.com/2016/03/09/my-purpose-2/

Atha and I started going to different churches three years ago. We truly missed each other on Sundays. But I would often get a text from Atha on Sunday. “Are you worshipping?” she would ask. Or after church, she would ask what songs we sang. She and I would compare songs, and talk about what they had meant to us. Sometimes she would even text during her worship service to say, “We are singing Great is Thy Faithfulness!” That was our favorite song, one which encouraged each of us so much. We would talk about the sermons we had heard, and Atha would ask what I had learned. Ever the teacher. Ever concerned.

Atha began having some significant health issues last fall. On Dec. 26, I got a text from her son, Kyle, telling me that they were taking Atha to the ER. The day was very grey, cold, and icy…..just like my heart felt as I worried about her all that day. It was discovered that in addition to some other issues that had plagued Atha’s body, she had also recently suffered a stroke. I was shocked when I first saw her in the hospital. How sick and tired and old she looked!

On one of my visits to the hospital to see her, two CNAs came in the room to clean her. I sat behind the curtain as they worked. Soon, in typical Atha fashion, she looked at the young man and said, “Young man, what do you want to do with the rest of your life?” He stammered around for an answer, not expecting such a question from this little sick woman. I just smiled. He didn’t know my Atha. She then proceeded to instruct him on setting goals and achieving them. I bet he never forgets her.

Weeks went by, with Atha sometimes rebounding and giving hope that she would recover, only to be followed by a downward turn. She would fluctuate between rehab centers and the hospital. On some of my visits with her, she would talk in her special way….slowly and with difficulty, but still like her old self.

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“What do you know today, Patty?” she would ask. She didn’t want to talk about herself, but I felt guilty talking about me and my family and my issues, so small compared to hers. But that was Atha, always concerned for me above all of her own cares.

One day in the rehab center, she was very vacant. I was worried. I couldn’t get her to engage in conversation and she seemed far away. A therapist came over to her and asked Atha to tell her who I was. Atha looked up, brightened, and said, “This is my friend, Patty Moore.” Just like she always used to do.

On Monday, March 21, I sat by Atha’s bed at the hospital. She wasn’t doing well at all, but we still hoped for a full recovery. She kept her eyes closed, but she often did that. She didn’t talk. I opened my little Bible and held it up close as I read her some Psalms. Every little bit Atha would quietly say, “Amen.” That was all. Then she asked me to pray for Jesus to heal her, so I did. And before I left, I told her I loved her, my friend. And she said she loved me, too.

On Thursday, Sarah got the call about end of life issues and hospice. No one could believe it was happening. I spent part of that evening with them at the hospital. Before I left, I leaned down to my mostly unresponsive Atha. I said some things to her, and then I told her that she would always be my dear friend. Very softly, she spoke to me. One word.

“Friend,” she said.

Atha was moved to hospice late that night. I saw her on Friday and on Saturday, where a little twitch of her mouth was the only response she gave me. On Easter morning, a gloriously beautiful morning with a soft snow and bright sunlight, Atha went to heaven. How significant that her home going was on Easter! Atha always knew how to do things right.

This morning, a couple walked into a local church here in Wichita and slipped into a pew near the back. They were dreading this day. He put his arm around her as she fought the tears that were forming. Gary and I were here for Atha and for Scott, like they had always been present for us. But I just never dreamed it would be in this way. Never in a million years.

Many people were in that church this morning to honor Atha. As part of the service, people were given time to tell their stories of Atha…..of how they knew her…..of what she meant to them…..of how she had impacted their lives. She would have loved the stories, even though they were about her. She did love hearing and telling stories, after all. It was wonderful to hear just a small sample of how she had blessed and helped so many.

I’ll always treasure the many Atha stories I have tucked away in my memory and in my heart. Too many to tell here, that’s for sure. But suffice it to say that the best thing that Atha could ever have said to me is the last thing she ever said to me.

Friend.

And with that, I am beyond blessed.

This is my friend, Atha McNay.

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The Detour

Aaron and I were in Dillon’s last week, where I told him to pick out some items for his Friday snack bag. I usually have his goodie bag all ready for him when he comes home on Friday but this week had been full of unexpected things that had made it impossible for me to have his bag done beforehand. He never minds picking out the items himself even though he also loves it when his bag is full of surprises. His treat bag is a reward for a week well done by Aaron…..or at least done, sometimes not all too well.

Better behaviors = bigger bag. Or so that’s how it was meant to go. Like his former teacher, Mr. Z, used to say – “Sometimes you have to make it worth his while.”

Aaron, ever the clever one, sometimes calls it bargaining. Nothing much slips by his awareness.

Anyway, it’s fun to give him something to look forward to and to work for at the end of his week. On this particular Friday, he had already walked fast and eagerly toward the bakery aisle where he knew there would be a container of croissants waiting for him. I gave my permission as he held the treasure up for me to see, but I said no to his hopeful request for TWO packages as he held up the second one for me to approve. Aaron just laughed, not at all surprised to be vetoed on that one, and then he lunged past the meat section toward the candy aisle……but not before stopping to loudly point out the lobster and shrimp like he always does. I could really just have a recording of my comments as we walk through the store on most days. He’s so predictable in many ways. In other ways, not so much.

Aaron turned left down the candy aisle, seeming oblivious to the sample lady standing nearby. This pleasant young lady had my attention, though, so I stopped at her little table to acknowledge her offer. I was distracted for a short time with little Twizzler samples and water flavor enhancers, chatting away as I am prone to do. We finished our brief conversation, said “Have a good day!” with our smiles…..and I noticed that her eyes darted down the candy aisle that was just behind us and her smile grew even larger.

I turned around and instantly knew why as she said, “Looks like he’s found some candy!” There was Aaron, getting down and personal with the Starburst Jelly Beans.

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And there was a man coming right toward him, pushing his cart and just looking at Aaron. I’m used to Aaron sitting down in store aisles when I’m not there to tell him no, but I imagine this man wasn’t at all sure of what was happening here. I was telling Aaron to stand up, but Aaron doesn’t stand up quickly from a sitting position…..and it’s quite a sight to see when he does……so now this man just swerved around Aaron and gave me a kind smile as he passed us.

I smiled back, thankful that he didn’t scowl or stare awkwardly.

At times like this I just need to have a sign that I can hold high. A sign that in bold letters says – DETOUR!!!

Aaron is truly completely clueless that he has done something a little strange or that he is disruptive. We face these moments constantly in his life. It’s just who Aaron is, and it’s who we must be as well.

We often must take a different route to our destination with Aaron, and hope that we arrive there…..and in one piece. What worked for our other two children didn’t work with Aaron and often still doesn’t. When our children were younger there were many moments of frustration from them as they tried to understand their unusual brother. They both went through times of questioning, as did Gary and I, about why Aaron acted the way he did. Even after the diagnosis of autism, we still struggled to understand what made Aaron tick.

There were times that Andrea and Andrew thought that Gary and I didn’t discipline enough. That we gave in too much. That we let Aaron have his way too often. Now that they are adults, things have settled down a lot and they really do understand their brother. They love him to pieces. It just takes time, education, and a little maturity to come to grips with a brother who can be disruptive and annoying……and super embarrassing in public!

We could be rolling right along in life and before we knew it…..DETOUR!!

A detour because of Aaron’s behaviors or actions…..a time we were forced to recalibrate…..to try to understand and to work through a situation. Or to be uber patient or thick skinned, despite the red on our faces or the words we wanted to say but couldn’t…..to Aaron or to insensitive others.

After all these years, when I turn and see Aaron sitting on the floor like he did at Dillon’s, it makes me laugh. He does look pretty cute and funny sitting there. I think people now are more aware, too, of these special needs. Their smiles and looks of understanding are more encouraging to us parents than they probably realize.

To you parents of special children, just keep the lines of communication open as much as possible with your other kids. Let them vent without judgment. Understand that age, hormones, peer pressure, and so many other things weigh into their reactions to their special sibling. Things WILL settle down with time. And in the meantime, try to spend some one-on-one time with your children, a time where they know they can safely talk to you and that you will have empathy.

And remember that we often have to take a detour, going around issues in a different way than we normally would, because that’s just how life is in their world……and we can’t change that.

Later Aaron shared some of his jelly beans with me. That’s the way it is. Understanding and love lead to sharing and sweetness.

Sticky and germy sometimes, but still it’s sharing, done Aaron’s way.

The DETOUR way.