Category: Relationships

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 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!

             

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.

Pictures of Kindness

Aaron has a kind side to him that we love to see. He’s always liked to share things that he has, including money, which we discourage. Lately I’ve been sending him to his day group with baggies of baby carrot sticks, pepper strips, gum, or something else along that line. He then will sit with his friends and share his food, hopefully satisfying his sharing urge without also giving away his money.

Aaron was so sweet over the weekend here at home. He knew that my friend, Atha, was not expected to live long. He was concerned about that, more than we usually see over those things. He asked about it several times. Then after I returned from the hospital and we watched Wheel of Fortune on Saturday, he held his hand out to me on the couch and said, “Here!” I held out my hand, not showing him my reluctance, and he dropped two very sticky jelly beans onto my palm. Therein lay my reluctance……sticky, germy, well-handled jelly beans. But I didn’t think too long…..didn’t give myself time to chicken out. I just thrust that candy in my mouth and thanked him broadly. Gulp!!

Later he sincerely wanted to give me even more jelly beans, so he got out a bowl…..of course!…..and poured a few of his prized jelly beans in the huge bowl, handing it to me proudly. Such kindness once again! And at least this time the candy wasn’t man handled first, but came straight out of the bag. Relief!

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As I watched basketball soon after the jelly bean gift, Aaron came downstairs with his favorite soft blanket. He proceeded to offer it to me, and once again I didn’t refuse. I just sat still while he placed the blanket over my legs, pulling it just so and making sure that my feet were covered. Sweetness!

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Last night, again while I watched basketball, he gave Gary and I each a piece of his favorite Big Red gum.  He knew that Atha had gone to heaven that morning.  He had seen me earlier, with tears on my face, and instead of calling me a cry baby like he usually does in his discomfort with emotion, he instead gave me a piece of gum. Empathy…….rarely seen!

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This morning Aaron wasn’t too happy about going to his day group. Sometimes Mondays are that way for him, just like they are for many when it comes to ending a fun weekend. I was afraid of a real meltdown this morning when I heard Aaron’s back scratcher go sailing up the hall floor. Aaron had thrown it. Oh dear, I thought.

A little talk and a little time helped. I cleaned his glasses like usual as I listened to him complain one more time, but not as energetically as before. And once I told him that we could take Jackson with us, all doubt was gone. Happy Aaron was ready to go!

Once at Paradigm, Aaron ran inside while I got Jackson ready to be swamped by Aaron’s friends. His collar and leash in place, Jackson hopped out of the van and enjoyed all the petting and exclamations that usually happen when he’s being adored. But Aaron wasn’t totally happy until he made sure that his very special friend was able to be wheeled out in her chair. “S” was all smiles and even talked to me about big old Jackson as I made sure that Jackson was right where she could see and touch him.

Soon we were back in the van, Jackson and I, and Aaron’s group began walking the few blocks to the nearest Quik Trip. I looked as I drove away and what I saw warmed my heart, so I snuck into a parking lot and waited for the group to pass by. This first picture shows the main group.

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Look who came at the end. Sorry for the poor quality of these pictures.

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There was Aaron, walking with “S” and one of his favorite staff, Antoine. Aaron just loves “S” and another girl at his day group, both in wheel chairs. This act of kindness, Aaron walking slower so that he could stay with “S”, just made me very thankful and happy for the kind heart that Aaron really does have.

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Kindness. I just can’t say enough about the importance of that quality in any of us, but especially in big old blustery Aaron, who at times seldom shows concern for anyone other than himself. Emotion and thinking of others is a characteristic that hasn’t usually come easily to Aaron over the years. Expressing those traits is hard for one with autism.

God was good to give me these evidences of Aaron’s heart this past weekend. He was good to allow me to see Aaron, unaware of my presence, showing such kindness to his special friend.

We never know what a day with Aaron will hold. Kindness TO Aaron certainly helps make situations smoother.

Kindness FROM Aaron…..priceless!!

The Waiting Game

It all started a few weeks ago with a commercial that Aaron and I saw on television during Wheel of Fortune. There was Ronnie Milsap, playing a piano as he sang one of his signature songs. For some reason, Aaron was captivated. Maybe I made a comment about Milsap. I don’t really remember, but from that point Aaron was on a mission. His mission, that he gladly accepted, was to find a Ronnie Milsap CD. Of course, Ronnie Milsap CDs are virtually impossible to find on store shelves. We did find the Ronnie Milsap insert at Wal-Mart that showed where some CDs used to be, but none were to be found. This discovery just further fueled Aaron’s desire to find some Milsap music, but several stores and phone calls later found us empty handed.

Aaron knows that when one is empty handed, there is always…..AMAZON.COM!!!! His answer to every fruitless search on the planet is found….in his opinion…..at this amazing Amazon place. And Aaron, knowing that Mom was weakening in her search, knew something else. He knew that one should strike the iron while it’s hot, and that if Mom was on the amazing Amazon for one item, she might…..just might…..order two items while she’s at it. Or even THREE!!!

So Aaron used his very favorite internet tool…..GOOGLE. And on Google he found an epic disaster movie that he decided he could not live without.

10.0 EARTHQUAKE!!!!! Predictable story line…..cheesy acting…..unknown actors……painfully unbelievable….

In other words, the perfect movie in Aaron’s professional opinion. And trust me, he knows ALL about terrible B disaster movies.

So this past Tuesday, Aaron hovered behind my chair as I ordered The Essential Ronnie Milsap CD……10.0 Earthquake……and The Essential Charlie Daniel’s Band just for fun.

Aaron’s hounding and hovering surely paid off, he was thinking.

And then it began. The countdown, all too familiar to me. And a big reason that I really wanted to find Ronnie Milsap in a store, where I could buy the CD outright without the wait.

I had barely gotten out of my chair after placing the Amazon order when it began.

“Mom, when will it come?” Aaron asked.

“It’ll be a few days, Aaron,” I answered.

“So when will it get here?” he continued.

Oh dear. I was thinking that paying the whopping postage charges for overnight shipping might have been worth it. I didn’t want to tell Aaron that Amazon had said 4 – 6 days. Why not? Because then Aaron would want to know which it would be. Four days? Or six days? If four days, then that would mean Saturday. If 6 days, then that would mean Monday. We would be in constant uncertainty as he tried to nail down the four or six day business. Nope. So I made a decision at his next inquiry, which was soon in coming when I didn’t answer the previous one.

“Mom, how long will it take?” he queried.

I told him it might take a week. That’s a nice solid guess.

“A week?” he confirmed.

He thought for a few seconds.

“So……next Tuesday?” he asked.

“Maybe,” was all I would venture.

“So if it doesn’t come on Tuesday, then you lied?” he continued.

There is no winning in this waiting game with literal Aaron.

There were more questions that day, and the next.

Will it come in a box?

Will it come to the front porch?

Will it come to the mailbox?

We were 24 hours into the amazing waiting game from our amazing Amazon order, and I was already exhausted from Aaron’s desire for definitive answers.

On Thursday morning, Aaron was up before 6:00. I was NOT ready for that! And I was really NOT ready for this, the first words out of Aaron’s mouth as he stood in the kitchen.

“Mom, you said it might come in a week?” he asked.

“Yes, Aaron, it might come in a week, but we’re not sure,” I answered.

“Why might it come in a week or not in a week?” he wanted to know.

Here, Aaron. Drink your coffee and get back with me later.

On Friday, it went like this: “Mom, I think my video will come on the 15th.”

“What day is that?” I asked him.

“It’s another Tuesday,” he told me.

Tuesday to Tuesday is a week, and Aaron was hanging on to that hope.

Saturday: “Mom, what time does the mail come?”

AHHHHHH!!! With another nebulous answer, Aaron just walked away in disgust.

He stood at the window later in the afternoon, eyes hopeful as he watched Gary remove the envelopes from our mailbox. Was that a package that Gary removed?

Yes! YES!!!! Dad had a package. Could it be?

I was thinking it BETTER be!!!

And yes, finally Aaron held his long awaited amazing Amazon package! He was all smiles…..but no more so than me! Inside was Charlie Daniels, Ronnie Milsap, AND 10.0 Earthquake!!!!

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Aaron asked if we could listen to Ronnie Milsap later while I fixed supper. I agreed. He stood in the kitchen for a song or two, but before I knew it he had gotten a dining room chair and perched himself in it as he listened.

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He was pretty cute sitting there happy as a lark, listening to every word of every song. He kept the CD holder close by, and at the end of each song he would look to see what the next song was.

“Mom, Smokey Mountain Rain is the next song!” he would announce, rubbing his hands together in delight.

Ronnie Milsap continued to croon during supper, with Aaron trying to hear every word and every note.

Of course, I watched the stellar Earthquake 10.0 movie with Aaron later. It was as awful as I knew it would be. Aaron yelled and clapped and had a great time. I endured.

“Mom!” he said at one point. “Your face doesn’t look like you like this movie!”

Sometimes his powers of observation are very acute. So I worked hard to rearrange my face and act interested. Aaron kept turning his head in my direction, matching the look on my face with my level of interest. 87 minutes. I was a far better actor than any of those unknowns on the screen, let me tell you. 87 minutes of fake interest should earn me an Oscar!

Well. Things should be a little more settled down here. The amazing Amazon package arrived….and in LESS than a week! We have fun new music to listen to, and I already checked off watching another lame movie so I don’t have to hear Aaron ask me every day about when I’m going to watch it with him.

Tomorrow Aaron has a doctor appointment in the afternoon. I will go to my Bible study in the morning, then come home to pick him up for our usual “Doctor Day Lunch Out.” I can hear it now.

“Mom, when will you go to Bible Study?”

“Mom, when will you be home?”

“Mom, where do you want to go eat?”

“Mom, what time is my doctor appointment?”

“Mom, what time did you say you’ll be home?”

“Mom, what time are we going to lunch?”

Another day…..another chance to enter Aaron’s world and to hope he can tolerate mine as well.

 

Simple is Good

I can hear our Kansas wind outside blowing like crazy. We’ve had several days in a row of very strong winds, typical for flat Kansas. I can also walk by a mirror and see that I’ve been out in the wind as I look at my fly-away hair!! The winds remind me of living with Aaron in many ways. He’s like shifting winds most days. We never know what we’ll wake up to find with Aaron as far as his mood or his physical state or his general attitude.

Lately, though, he’s been mostly very happy. I wrote about that a couple blogs ago. It’s been fun for us to experience, and definitely a relief for the staff at his day group, I’m sure.

But I should have known that on the very next day after posting my happy blog, Aaron woke up in a mostly grouchy mood. Why does that happen? Anyway, he kept coming into the bathroom where I was putting on my makeup, fixing my hair, and doing all my getting ready things that morning.

“Mom, can you hurry?” he impatiently asked.

“Mom, why are you taking so long?”

“Mom, did you clean my glasses?”

“Mom, why aren’t you ready?”

I know that when he’s like this it’s better to mostly ignore him instead of returning his impatience, so that’s what I did. But not before I made one observation.

“Aaron,” I said. “You were so happy yesterday. So why are you angry this morning? What happened during the night?”

He just stood there and stared at me. I continued with my face preparation as he stared. Then he simply turned and walked out of the bathroom.

Soon he was back, of course.

“Well, All Star is boring!” he informed me. “I found that out during the night.”

It was really hard not to laugh. So that’s what he found out during the night? That All Star Sports, their activity for that day, was boring? Since when?!

Aaron went on to his day group and he had a reasonable day, from what I was told. I went in to his day group with him to talk to Barb about whether Aaron and I could take supper over to one of their residential homes on Friday. Aaron’s best friends, all girls, live there and he had been wanting to go back there again as we have done in the past. It cheered him up to have that planned at last. This was on Wednesday.

The next night, Thursday, Aaron had two hard seizures during the night. He stayed home on Friday, feeling crummy, but wondering over and over if we could still go to “Shawna’s house,” as he calls it. He insisted on going to get a few groceries with me, walking like a zombie through the store. He slept off and on during the day, but had no more seizures. We did take chicken enchiladas and No Bake Cookies to his friend’s house. I was so thankful that it worked out for Aaron to do that. He slept all the way there and most of the way home, but he had a good time at their house as we sat around the table, eating and talking. The girls had missed him that day at Paradigm, and they were so sweet…..rubbing his back and asking him how he felt. Each of them has significant special needs, so it’s just very touching to see them worry about Aaron.

Aaron was in bed a little after 8:00 that night, totally exhausted. But he kept coming back downstairs to be sure that it was OK for him to go to bed so early. It was fine with us, but not so much for Aaron and his rigid schedule. Bedtime is 10:00 or later!! Not 8:00!! But he slept for 12 hours and woke up a new person.

A very new person!!

Look at what Aaron did with Gary and I on Saturday.

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Aaron, who resists most work…..and definitely yard or garden work….actually got outside with us and helped!!

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And he helped happily!!

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He gathered up the big Crepe Myrtle limbs that I pruned, and he pulled up old tomato stakes with Gary in our garden.

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And Jackson supervised all of us.

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It was a really a pleasant afternoon, and a surprising one for us as we watched Aaron willingly help.

Simple pleasures mean the most to us. The warm sunshine, the fresh air, trying to find the pecking woodpecker we heard, laughing at Jackson encounter our neighbor’s trying-to-be-brave cat, and ending the day with a simple supper…..Wheel of Fortune and Blue Bloods…..and a couple games of Skip-Bo.

The older we get, the more we know that simple is good. Simple is better for Aaron. And the things that make him happiest inevitably do the same for us as well.

Happy, Giving Aaron!

I wanted to write a quick blog tonight in order to test my new blog site. I have switched to WordPress now for blogging since I was having so much trouble with Blogspot. Gary couldn’t fix the problems, and if he can’t fix them they can’t be fixed.  That’s a mouthful, but it’s true. Anyway, more about all that in another blog. I just want to test my new site tonight. Bear with me as I work out the kinks. Who am I kidding?! Bear with me as Gary works out the kinks and I sit beside him wringing my hands. 🙂

I have to say something about Aaron, though, right? He has been so happy lately!! I’m almost afraid to say it! He’s just thriving in his friendships at Paradigm, his day group, and is enjoying doing what he loves to do the most…..giving. Here are some things he has recently taken from home, on three different days, to give to his friends.

His whale:

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His fluffy dog:

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His other stuffed dog:

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And today, along with the above dog, he took gum and green pepper slices that he shared. If he keeps up this giving, his room will be all clean!

He was also very happy that today was Shawna’s birthday, so with Barb’s help he made her a card at Paradigm and then signed it. That made him feel so good!

Today he also wore the necklace pen that Stephanie made for him last week. He loves it!

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If you want to have your day brightened, come with me sometime when I go to pick Aaron up from Paradigm at the end of the day. Today I just sat in the van watching the “kids” – who are really young adults – get in their various vans and cars as they left for the day. Many go to group homes and so ride together. In some ways, it’s heart breaking to see the van with wheelchair accommodations lifting some of Aaron’s friends up in the van for their ride home. It could also be sad to see the various special needs of the clients as they spill out of the building and mill around in the parking lot.

But if you get beyond that, you will see big smiles…..hear laughter…..and see friendships all over the place. Finally, out the door bounded Aaron. There was Yolanda coming behind him, holding her dog leash. I soon saw that the other end of the leash was around Aaron’s wrist and he was laughing up a storm. He came to the van with Yolanda following and holding the leash, opened the door, and just burst out laughing. Yolanda was laughing, too. She’s much older than Aaron but she had youthful delight on her face. Yolanda doesn’t hear, so in her difficult-to-understand speech she told Aaron goodbye and that she would see him tomorrow. He said, “OK!” and that was it. But he was, once again, so happy. It truly warmed my heart.

I remember when Aaron first went to a special needs school here in Wichita. After a few days there, he came home and said, “Mom? I notice something about that school. All the kids there have problems. What’s my problem?”

I didn’t know what to say as I tried to swallow the lump in my throat. But then I told him that he didn’t have problems. Yes, he had Epilepsy and Autism, I told him. But he didn’t have problems. He and all his friends were wonderful in their own right.

So that’s what I told myself today as I watched these amazing young adults with their limps and their unique looks and their wheelchairs and their……specialness! There are issues and there are concerns and there are so many things to think about with each one.

But each one is special and valuable. The problems they face put me to shame, but they live daily with their challenges.

I can learn a lot from them. I can learn a lot from Aaron.

As we drove away, Aaron started talking. Of course. And I listened, wondering what new thing he was about to teach me today.

The Scar

 

It’s been an interesting week.  I guess that’s one word to describe it.  Other words would apply as well.  Stressful…..demanding…..concerning…..worrying.  In case you’re wondering what I’m talking about, you can read about it in the blog I wrote.  Here’s the link:

 

 

It hasn’t just involved Aaron, though.  Yet he certainly does take center stage in our lives.  All the above descriptive words certainly can, and do, apply to him.  I’m reminded of our bad beginning to our week now every time I walk into his room and see this.

 

 

“This” being the place on his wall where a picture similar to the one hanging USED to hang.  Used to hang before he yanked it off the wall in a fit of anger on Tuesday….after fits of anger on Monday.  Anyway, read my last blog, like I said.  It explains more about what happened.

 

Now we’re left with the ugly reminder there on his wall.  A reminder of a bad day….of hurt….of anger….of events that led up to this ugly scene and this ugly spot on his wall.

 

A scar.

 

It would be easy to see this scar and to focus on the bad things that happened that day.  It would be easy to see this scar and to remember the awful feelings….the frustration….the anger…..the failures.  Both mine and Aaron’s, for sure.

 

However, there are other parts to this whole story, too.  There are other pictures that I can choose to focus upon if I just will.

 

And there it is.  It’s a matter of my will, of my choosing, as always.  I can choose to only conjure up the depressing thoughts of those two days, and of this past week generally, or I can instead choose to ponder also on the bright spots.

 

On Monday evening, after Aaron’s really bad day, he suddenly asked if he could write our friend Atha a note.  He knows Atha, and he has heard us talking about her stroke.  Aaron rarely offers on his own to write anything to anyone, unless it’s what he wanted to write on a sticky note about me on Monday.  It wasn’t nice, either.

 

So this idea of his to send Atha a get-well note in his own words was just a very special, unexpected warm moment in the midst of a terrible time for him and for us.  That made it a double blessing.  A very needed blessing, double at that!!

 

 

I can look at the scar on Aaron’s wall and I can remember this precious note.

 

Also to be remembered are the prayers of friends and family….the kindness shown when aware of our need….the time spent with friends and the encouragement of warm hugs.  There was Julie, an employee at our Dillon’s, who asked me out of the blue if I needed any more one dollar bills for Aaron.  It’s not easy to get the ones when I need them, and I had forgotten in my stress that I was running low, but Julie saw me and asked me….said she thought I might be running low….said she was looking out for me.  She has no idea, though I told her a little, of how much that meant to me this week.

 

The scar on Aaron’s wall can remind me of all those blessings.

 

And there is the recliner at Dillon’s – two recliners, actually – that Aaron sat in the first time he saw them.  They were something new.  Something fun!  But probably not something that Dillon’s wants everyone to sit in and enjoy like Aaron does.  J  So the next time we saw them, in front of the registers, each chair held a huge stuffed animal.  I laughed and told Aaron that now he couldn’t sit in them since they were already occupied.  I figured that Dillon’s had a motive for putting those animals there.

 

On Friday, Aaron and I were there after I picked him up from Paradigm.  We were ordering him his favorite Cheddar Pasta Salad when suddenly he took off walking briskly toward something.  I thought he was headed to the Chinese side of the deli.  He LOVES looking at the Chinese food, and having the workers ask him what he wants while he laughs and says he’s just looking.  Every time.  But on Friday, when I looked up to see him walking away, I soon saw where he was headed.

 

 

Yep.  He spied the recliner, moved to a new spot in the store.  The empty recliner….but not for long.  Look at his smile.  How could I not smile?

 

I see the scar on Aaron’s wall and I see the choice I have to make.  Aaron knows he did wrong and he knows he must wait for the wall to be repaired.  I don’t need to keep hammering that home to him.  But there are some issues that sometimes need hammering into my brain as I look at his scar.

 

What will I allow that scar to teach me?  What will I allow that scar to do to my heart and to my spirit?  Will I use that scar to remind me of the bad, or will I use that scar to let me remember the blessings in the midst of pain and the lessons learned in the hard times?

 

We all have them, those ugly scars of life.  We can wallow in anger and unforgiveness….regret and guilt…..pain and sadness.

 

Or we can choose to do what God said and forget those things that are behind, and press forward.  I know we can’t really forget, but we can forget in the sense of clinging on to them and letting the defeating thoughts control us.  What’s done is done.  Let God handle it as you pray and trust.

 

And as you forgive those that have hurt you, whether they know it or not.  Like Gary said on Monday night, our relationship with Aaron is much like God’s relationship with us.  It’s one of constant sin on my part and constant forgiveness on God’s part.  How can I do less?
I want my scars to be touch points for memories of God’s grace in my life, and then for me to extend that grace to others…..including….especially!….Aaron.