Category: Adult Autism

The Cold Sore

You know from the blog title that what I’m going to write about today has something to do with the pleasant subject of a cold sore.  Let me tell you, I am cold sore weary.  Looking at it…..talking about it……putting medicine on it……discussing every little detail of it……

It’s just tiring.  Oh, and I don’t have the cold sore.  Aaron does.

You probably guessed that.

I do feel sorry for him, truly.  Cold sores are painful.  He’s never had one before, so this new experience has been very impacting to him.  You would think with all the medical challenges that he faces, a cold sore would be minor.  But not Aaron. 

He will talk a sore to death.  He had a little cut on his knuckle not long ago, and I heard more about that little cut than I ever, ever want to hear again.  I have to say, though, that some of his statements are really funny…..or really insightful……or downright confusing.

“Mom?” he asked one morning as he held his cut finger up in front of my face.  “Is the blood holding in the sore of the skin?”

Ponder that one. 

“I’m not sure, Aaron” – has become a routine answer for me.  Or, “Google it, Aaron.”  That’s another good one.  Both are said in a rather monotone voice after about day three or four of Aaron dissecting everything there is to possibly dissect about his sore or bruise or bump…..or cold sore now. 

I wish I had written down all of Aaron’s comments about his cold sore, or how many times a day he has talked about it.  This unusual malady has him stumped for answers and explanations, so he talks it to death.  My monotone voice is in full force, trust me.  Aaron doesn’t notice that, of course.

So here are some of his statements about his cold sore.

“Mom, it hurts when I eat because I open my mouth high.”

“It stretches!”  (Talking about how it cracks)

“I feel it pumping.”  (That feeling of your heartbeat in a sore place)

“It gets dark…..the color of the sore.”  (How it looked as it scabbed over)

“Mom!  The medicine fell off!”

And after I told him that it gets worse before it gets better, he paused a minute before saying, “The reason it’s getting worse is because it’s getting better.”

Sure, Aaron.  Yeah.  We’ll go with that.

On Friday he went with Amy, one of the staff, to pick up some things for Paradigm at a drug store.  Aaron put two and two together really quickly.  Just that morning on our way to Paradigm, he and I had stopped at our Dillon’s and bought some new cold sore medicine.  But with Amy at a new drug store, he of course engaged the pharmacist in a conversation about his awful cold sore.  Aaron had news for me about what to do to treat his cold sore, according to this concerned pharmacist, but of course it’s what we were already doing.  Aaron didn’t bother to tell him that because he loved all this new attention. 

So today Aaron went with me down to Dillon’s again.  We went up and down the aisles while I checked this and bought that, and Aaron tried to talk me into more than his salad…..and croissants……and flavored water.  I ended up at the pharmacy, where I was checking on some calcium on the shelf, and where Aaron spied Marc and Greg in the pharmacy.  We have known Marc and his family for years, and Greg has gotten to know us more recently.  Aaron wasn’t concerned at all about whether we know Marc and Greg.  He only saw a fresh opportunity.

“Hey!” I heard Aaron say as I was bending over a bottle of calcium.

And I knew.  I knew immediately, from years of experience, what Aaron was doing.  He had grabbed a prime opportunity by the tail.

“Hey!” he repeated as he moved to the counter. 

I tried to run interference but Marc is very kind, and he knows Aaron, and Greg is also very kind…..so Marc moved over to where he could talk to Aaron.  I laughed mentally because just a few days earlier I had seen Marc and his wife in Penny’s, where I told them about the cold sore and how Aaron is so obsessed about it, and where Marc gave me some medicine advice.

“I have this cold sore,” Aaron began, and off he went.  Funny how totally Aaron could ignore me and stay on track with his story as I stood there commenting on all of his comments.   

“Aaron, your cold sore is getting better.”

“Aaron, we’re doing what they’re saying to do.”

“Aaron, you know all about how to take care of it.”

“Aaron, Marc and Greg need to get back to work.”

And so it went, until this:

“Hey!” Aaron added.  “Have you watched XFiles?”

“Aaron!” I said.  “Don’t get started…..”

“Have you watched NINE seasons of XFiles?!” he continued. 

“Aaron, we need to go!” I repeated.  “They need to get back to work.”

“Have you seen the smoking man?” Greg asked.

“Well, now you’ve done it,” I told Greg as I laughed.  Talk about throwing gas on a flame!

We finally escaped as customers began to collect, and probably wondered why we were standing there talking about XFiles to two pharmacists.  Cold sores, maybe……but XFiles?

Aaron ate his salad and his croissants, and I put more medicine on his cold sore……but I think it’s already fallen off.  Hopefully soon the cold sore will be a distant memory.  At least with a cold sore, Aaron doesn’t have to lift his shirt up to show it to unsuspecting random people.  Now that’s a memory!!

Maybe a cold sore is a blessing in disguise after all, at least for me and for others who have been bombarded with the bare stomach shock as Aaron showed off an under-his-shirt sore.  

Life is never dull with Aaron.  I could only wish on some days……

 

 

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom to all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

 

 

 

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.

 

 

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.

Fixing My Broken

 

I sit here at the kitchen table, one ear on the washing machine and the other on the baby monitor. Our washing machine was having some trouble two nights ago, so yesterday when Gary got home from work he opened up the back and got it all fixed. At least we hope it’s all fixed. That’s why I’m listening as it washes a second load this morning, wanting to be sure it’s working as it should.   A broken washing machine is no fun!

And my other ear is on the baby monitor because Aaron had two hard seizures last night. He’s been out of bed this morning, drinking his requisite three cups of coffee and then back to bed. He will sleep off and on today as he recovers. I’ll continue to listen for further seizures, which he often has during the day following his night episodes. Poor Aaron. He and I are still hoping to take supper over to Shawna and Aaron’s other friends at the house in which they live. He keeps asking if we can still go and I keep hoping that we can. Why do seizures have to so often mess up his fun times? It makes me sad for him. So in a sense a broken Aaron is no fun, either…..for him, certainly.

I don’t look at Aaron as broken, but I look at his seizures that way. They interrupt his life so often and so it breaks my heart for him. They break into his routine and into his plans, mess up his sleep and his following day, make his bitten tongue so sore, his head hurt, and all the rest that goes along with these awful things.

It makes me think about how we live among so much brokenness. There are so many broken issues and broken people all around us. Just this week I visited my dear friend, Atha, who is still struggling as she recovers from a stroke. Our friends in Texas, Steve and Dona, are working hard on his stroke recovery. Another friend’s son died from cancer early this morning. A friend is undergoing heart tests this morning. Our own daughter will soon have more medical tests run as her body continues to show a problem as yet unfound. Scrolling through Facebook…..looking at my prayer list……visiting with others on the phone or at lunch only confirms the deep hurts and problems that many are facing.

Our broken world is marred by sin, fractured back in the garden as Adam and Eve willfully disobeyed God. We and our world continue to bear the consequences of that sin in a universe imperfect now, not as God planned. But it’s not hopeless. Not at all. God made a way for each of us to come back to Him through His own Son. Jesus paid the price of sin, and for all who are called and respond to God through Jesus, there is life and hope.

God fixes our broken.

But we still have this life here, lived in broken bodies and in a broken world.

I watched Aaron on Sunday morning as he cut the Sunday coupons for me. This is his Sunday routine, performed faithfully for me as only Aaron does. In fact, he won’t let me come near the coupons with a pair of scissors because I don’t cut them correctly. Aaron cuts on the dotted line as best he can. Not near it. Not beside it. Not close to it. He cuts ON the dotted line.

Then he takes the little strips of paper that he has cut off and he meticulously snips them into tiny pieces as he holds the strip over his special trash can that’s just for that purpose and no other. It takes lots more time than necessary, but he doesn’t care about that. He has always, and will always, clip coupons and paper strips in this fashion. It’s very fascinating to watch.

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After the coupon is cut, he slowly and methodically places it into the coupon box. He doesn’t just toss it in. He slowly and carefully puts each coupon in its position, all neat and orderly. Look at the coupon box from this past week.

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As I think of the brokenness of life and of our world this morning, I’m reminded that for believers God is much like Aaron as he clips my coupons. God is full of purpose and planning for my life. He carefully cuts, always ON the dotted line, and He puts events and people and order into my life in the exact way that He knows is best. He is structured and precise as He takes each individual element of my life and places it exactly where it needs to be. His timing is perfect. His placement is always on spot. I may not understand it all. I may not like it all. But I know the One Who is doing the clipping and the snipping and the placement of each single area of my life, and of those I love.

And I know that I can fully trust Him to do it right. It’s called sovereignty.

“The Lord will accomplish what concerns me; Your lovingkindness , O Lord, is everlasting. Do not forsake the works of Your hands.” Psalm 138:8

Someday, maybe not until heaven, I’ll be able to open that box that holds my life events. I’ll see it all together, clearly, and I know that I’ll see order. I’ll see the plan of God. I’ll see each piece of my life put down just where and how God wanted it, always for my good and for His praise.

Even when I mess it up, God brings order back into it as I allow Him to do that. He loves me that much, like the verse above says.

So I’ll let God do the clipping, even when I don’t understand it or even agree with all of it. Because I know I can depend on Him to do it right, every single part and piece.

He keeps His ear on us, and He fixes our broken. He’s the only One Who can.