Category: Understanding

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.

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.

 

 

 

A Little Understanding, Please

I shouldn’t have let Aaron go to his day group on Monday.  His mood was pretty foul at home, but he wanted to go and so I let him.  He only wanted to go because he knows that having a special meal on Friday night depends on him going to Paradigm every day.  Funny how these rewards can come back to bite me.  He was pleasant on the drive across town.  But the way he slammed the van door when he got out was a sign to me that it might be a rough day.  And it was.

I knew when I got the phone call from Paradigm that afternoon, and Barb said a quick hello before putting her phone on speaker.  That’s usually what she does when she wants Aaron to also talk, and wants him to hear me.  Aaron was yelling, very upset and belligerent.  It had been a no good, very bad day…..and was soon to get even worse.  At this point, Aaron didn’t want to ride home with his driver.  Last August, we hired an agency to bring Aaron home from Paradigm in the afternoons.  Aaron likes going from point A to point B, with no stops in between.  But the route includes other clients that go home before him, so this had become a trigger for Aaron.  On his no good, very bad day….Monday….he did NOT want to ride anywhere but home. 

Once Aaron is upset…really upset….he’s like a volcano that must erupt until the flow of anger is over.  His autism prevents him from calming easily.  It prevents him from listening to reason or being reasonable.  He has very few filters, so words fly when he erupts, and some are inappropriate.  He decided on Monday to go ahead and ride home with the driver, knowing that he really had no other choice.  But he promptly told her to shut up when he got in the car, and he refused to put on his seat belt.  The whole way.  Not good….not good at all.

Shortly after he got home, upset still but calming some, my phone rang.  It was the agency that provides his rides home, telling me that they were very sorry but that Aaron would no longer be allowed to ride with them.  I understood, but I tried to do some explaining and then I asked for a second chance….but two days later was told there was no second chance.  Good luck with finding a new driver….it’s been nice working with you…. 

Back to Monday.  After the phone call, Aaron looked stricken.  He decided to try to rectify things by offering to help cut the ends off the asparagus I was fixing for supper.  I let him.  And during supper, out of the blue, he asked if he could write a get well note to our friend, Atha.  She’s been very sick and is in a rehab center.  I got him a note card and he wrote her his succinct get well wishes.  They were words of gold to me that night.  I think they will be for Atha as well.

Later, though, as Gary and I tried to absorb the events of Aaron’s day – especially the loss of his ride home, which is huge – things went downhill fast.  Aaron ended up realizing that we were trying to bring up the recurring subject of him moving out one day….living in a residential setting. 

“You could live with some friends, Aaron!” we said.

“I DON’T WANT TO LIVE WITH FRIENDS!!” he yelled.

And he stormed up the stairs as he told us how much he hated us.

But within seconds he was stomping back down the stairs, sitting in the recliner and rocking furiously.

“You just want me to leave!” he said, with tears coming down his face.

We tried to explain….tried once again to reason with him.  It doesn’t work.

“Aaron, Rosa lives with her friends and comes home on weekends.  And Shauna, and Natalie….”we told him.

“I DON’T CARE ABOUT ROSA OR SHAUNA OR NATALIE!!” he again yelled…..and again stormed up the stairs.

This went on for a long time, until finally he….and we….were spent and there was nothing else to say.

Tuesday was a better day at his day group, for the most part.  I drove to Paradigm in the afternoon to pick him up, fighting my frustration.  It didn’t help me at all to see and hear Aaron being rude to another client.  I was distant and silent as we started the drive home, finally responding some to Aaron but being rather cold.  That wasn’t a good choice for me to make.

“Mom!” Aaron said.  “You’re ‘iknorin’ me!”

The volcano erupted once again when we got home.  Aaron kept saying over and over that I had ‘iknored’ him.  He was crying hard, and my heart was breaking.  I tried to explain, but to no avail.  He pulled a large picture off his wall, taking some paint and dry wall with it.  He ripped a dollar bill into pieces.  He very loudly slammed his door several times.  And he told me that he was going to put a sticky note on his door that said, “Mom is an idiot!!” 

I sat on his bed.  He had his headphones on as he looked at a video.  I told him again that I was sorry, and I asked him to forgive me.  All he could do was cry and say, “You were ‘iknorin’ me!!”

So I said the words that always reach his heart.

“Aaron?  Would you like to go get a Slushie from Sonic?”

Without even a pause he quickly said yes, and so we got in the van and got his slushie.  I parked in the Dillon’s parking lot, away from others, and he slurped while I talked.  He calmed and I tried to explain things, knowing full well that Aaron doesn’t relate to most of our explaining sessions.  Finally I was done.  There was quietness before Aaron spoke again.

“Mom?  There’s a reason why you shouldn’t watch Alien Vs. Predator 2.”

He didn’t notice my deep sigh or the shaking of my head.

Oh, if only Aaron could convey to us his hurt and his anger with reasoning words instead of hard and hurtful words!  Or curse words.  Or just totally ignoring the situation and talking about aliens. 

Aaron often doesn’t even know why he’s frustrated.  He just is on some days.  As he escalates, so do others around him, and that only further compounds the issues.  I reacted with ‘iknorin’ him on some of the drive home, which I really shouldn’t have done, so he reacted.  Did he ever!  But he was afraid that I didn’t love him anymore.  He’s terrified of losing my love, but he can’t verbalize that.  So he reacts with anything that comes to his mind that demonstrates his deep fear and hurt.  That usually means that he breaks something, like his watch or his glasses or his picture on the wall or the dollar bill.

Why am I telling you all of this ugliness?

I’m sitting here listening to Aaron’s monitor….listening for another seizure which may come.  He had a long seizure at 5:30 this morning, and only one seizure means that usually more will follow during the day.  He’s napping in his room and I’m on alert as I go about my day. 

I tell you the ugliness of his behaviors because really, those behaviors hold him down more in life than do his seizures.  It’s a raw, hard reality for many parents of special needs children.  Those sudden, awful, interrupting, exhausting behaviors.

I can explain seizures.  Other parents can explain various visible special needs of their children, or even special needs not seen but understood.    But behaviors?  So frustrating….so embarrassing…..so condemning for both child and parent.

But we need those behaviors to be understood as well.  And we as parents need to always work to understand them, too, especially in the heat of the moment. 

I have friends who would say to others, “Please, please understand my loud and uncooperative and bizarre and hateful child.  Please just try to understand, and not judge and not condemn and try to give advice or lectures.  Just understand, a little even.  Sometimes that’s all we can manage, too.  A little.”

And love a lot.

Tuesday night, as Gary was going to bed, he said, “Hey Aaron.  Come here.” 

I thought that Gary had something cool to show Aaron, so I looked around the corner of the kitchen to see what it was.

And as Aaron walked toward his dad, Gary held his arm out and gave Aaron a hug.  Aaron even responded!

I blinked back the tears.  Sometimes it’s hard to love Aaron, honestly, but we must….and we do.  I was very thankful for that sweet picture that ended our second no good, very bad day with Aaron.

One more thing.  I went inside Paradigm yesterday when I went to pick up Aaron.  What a lifter-upper that was!!  Those wonderful clients, with so many needs, have so much love to give….even on or after the bad days.  Love for me and more importantly, love for Aaron.  We could hardly leave for all the hugs and talking and smiling. 

Every day is a new day, as Barb says.  A fresh new start.

“This is the day which the Lord has made.  I will rejoice and be glad in it!” 

But sometimes I AM glad when they’re over.  J 

Playing Skip-Bo at the end of one of those rough days

A Fight to the Finish

I’ve written in the past about how much it means to me when someone “gets” Aaron.  You know what I mean.  It’s when a person out somewhere in a public setting reacts to Aaron in a way that makes me know they totally understand him.  Or at least partially understand him.  I don’t know that even Gary and I on some days totally “get” Aaron.  This past Friday night was an example of both. 

Aaron and I went to Subway to get our special Friday supper, as per Aaron’s request.  One of the girls who began with our order was very nice, but I could tell that she was nervous with Aaron.  She was unsure of what to say to him, and very unsure of what he was saying to her as he robustly placed his order. 

“Can I have a sub?” he bellowed, with me standing close by patting his arm in an effort to soften his tone. 

“And can I have extra cheese?” he continued bellowing.  “My Mom says I can’t have extra cheese!” he rambled on as she was just saying that he COULD have extra cheese, and so she glanced nervously at me. 

I told her to go ahead with the cheese, which caused Aaron to bend over and rub his hands together as he laughed in delight…..which caused her to attempt an uncertain smile as she placed the extra cheese on the meat, all under Aaron’s watchful eye.  I wanted to tell her that it was OK….that Aaron was loud but harmless…..but I didn’t do that with Aaron standing right there.  I just hoped my smile would convey to her what I was thinking.

Just then, the manager appeared and began helping with our order.  I remembered her and she remembered Aaron.  This girl’s mother worked with special needs and so she grew up around other Aarons.  Therefore, she was very relaxed and affirming toward Aaron. 

“What you need, Buddy?” she asked Aaron as she waited for him to complete his order.  Nothing he said or did from that point on phased her in the least.  I think the other server was as happy for her to take over as I was.  Aaron was just very happy to finish his requests, figure out the mayonnaise issue, and watch as his sandwich was wrapped and labeled. 

Yes, we deal with watching others try to understand our Aaron nearly every day.  I wanted to hug the two who were on duty at Papa Murphy’s a couple weeks earlier.  They completely engaged Aaron on his level as they made our pizzas.  Aaron stood there in total happiness as he loudly talked to them about aliens and spaceships and rubbed his hands together like crazy as they responded to him as if he was talking to them about school or sports. 

Then there was the young man behind the counter at the theater yesterday, his eyes big with uncertainty as Gary and I both exited the restrooms at the same time.  Aaron was talking to him about the Star Wars movie, I think it was, that we had just seen.  All I could focus on was the “Would you please rescue me?” look on the boy’s face as he tried to figure out what to do with Aaron.  Aaron loves a captive audience, and that boy was just that.  He looked it, too, as Aaron talked loudly – of course!- and rubbed his hands together and laughed.  We tried to quiet Aaron and lead him away but Aaron had more to say.  As we finally left, I laughed and I thanked the shocked young man.  I really wanted to walk back to him and say, “You have just encountered the amazing world of autism!”  But I knew that Aaron would follow me and pick up his story where he had left off, so I left well enough alone as we walked to the van, Aaron talking all the way…..of course.

All of these are mostly “Ha-Ha” funny moments.  They may be embarrassing to us at times, or frustrating, but they are not usually awful.  Those more disturbing moments happen at his day group and occasionally at home.  That was also the case on Friday night.  We went from hugs when Aaron came home from his day group to the joy of ordering and eating subs to the downward spiral of Aaron’s cascading emotions.

It all started with me realizing that Aaron wasn’t telling me the truth about his rough day at Paradigm.  I made an off handed comment that hurt Aaron’s feelings, so after we watched Wheel of Fortune he turned to me and had “that” look on his face and in his eyes.  I knew then that he had started down that track of frustration.  Time proved that evening that Aaron wasn’t going to be easily derailed.  His emotions were in a turmoil, as were ours.  Yet if we escalated, it would only serve to further escalate Aaron, which is the last thing that needed to happen.  He escalates very well on his own, thank you.  Gary and I tried to exercise firmness with calmness.  Just when we hoped that Aaron had calmed, though, we would soon hear his heavy steps coming downstairs to engage us once again in the battle that was going on in his head.  He was almost manic in his laughter and in his efforts to unsettle us.  It truly is amazing to see, but not amazing in a funny way.

It’s the other side of Aaron that we don’t see that often at home anymore.  It’s him in a fight to express himself and voice his hurt over his own actions, or over ours.  But he simply cannot tell us with calm and rational words what it is that is bothering him.  Therefore, he chooses something that he knows will either alarm or frustrate us, and he will go off on it over and over again.  Just when we think that our words of great wisdom have reached into Aaron’s head, he starts all over again on that same issue and our heads just bow down in defeat. 

I sat in Aaron’s bedroom with him late that night.  He sat on his bed, legs dangling, trying to express himself and his emotions but clearly unable to do so in the way you and I would.  But he was winding down, I could tell.  I just needed to wait patiently, listen closely, and pray silently.  I literally bowed my head in prayer as Aaron talked.  I knew he saw me but he never asked what I was doing.  He may have thought Mom was falling asleep.  After all, it was after 11:30….way past both our bedtimes! 

At last he said he was going to bed.  I watched as he pulled back his covers and then began arranging his snake, skunk, and frog in perfect order.  I wanted to rush over and yank the covers up over Mr. Snake as Aaron worked and worked and worked to turn his lower skinny stuffed body just the right way.  But I knew that one wrong move could open up Aaron’s emotions again, so I just stood and wearily watched.  Finally all was well with the stuffed animals and the pulled up covers. 

I asked Aaron if he was reading before he went to sleep.

“No,” he said with no emotion.  “It’s 11:47.”

I was relieved.

“Mom?” he asked.  “’Guess what?”

And I knew he had nothing to say.  He does this when he wants us to stay with him.  He asks, “Guess what?” and then tries hard to think of something to say.

“What?” I answered.

“I’m wearing my watch lower,” he said as he pulled his shirt sleeve up. 

Maybe it was a few centimeters lower, but it sure was hard to see the difference.

“Mom?”  he asked again.  “Guess what?”

“What?” I repeated

“When Independence Day Resurgence comes out, do you think the theaters will be crowded?”

Sigh.

“I don’t know, Aaron.  We’ll just wait and see,” I replied.

“Mom!  Look at this!”

And at 11:49 I was looking at the back of the original Independence Day movie box and talking about the plasma ray coming down from the spaceship.

Oh dear.  Would this night ever end?

But if finally did, only after Aaron went up and down the steps several times to tell Gary about plasma rays and new Independence Day movie news and to say good night once again. 

Earlier during the evening, when Aaron was working through his anger, he began feeling badly about his actions.  He came to me in the kitchen and had something in his hand he wanted me to take.  I held out my hand, and Aaron gave me some of his Mike and Ikes.  They were sticky and I’m sure covered in multiple germs, but he stood there waiting for me to eat them.  So I did, praying silently for God to please strengthen my immune system at that moment. 

“I wanted to give you these Mike and Ikes since I’m sorry,” he explained as he waited for me to enjoy them.  So what could I do but eat them? 

And what can we do but try our best to do what we hope others will do with Aaron.  We appreciate the understanding that strangers show to Aaron.  Can we do less?  Understanding what makes him tick, what makes him upset, what it is he is really trying to say when he is so upset……this is all part of figuring him out. 

It’s “getting Aaron.”  Not condoning behaviors, which we don’t, but understanding the behaviors as much as a parent of a child with asthma understands an asthma attack.  I thought of all this when I was sitting in Aaron’s room with him, watching him come to the end of the fight, and realizing how vital it is that I understand.

It means as much to Aaron for us to understand as it does to us for others to understand.  Complicated.  But so very necessary. 

Aaron?  Guess what? 

We’ll keep trying to understand. 

And I should keep a box of Mike and Ikes stashed somewhere for good measure.

Shake and Toss

I remember when Aaron was just a little guy and we were stationed in Germany.  Boxes of gifts from family would arrive before Christmas, full of presents for all of us.  It was so exciting to place the bright packages under our little tree and see the happiness on the kid’s faces as they especially noticed each gift that had their name attached.  On Christmas morning, we would open our gifts and watch with the delight that all parents experience as our children could hardly contain their excitement.  It was a time of pure joy!

But Aaron quickly learned something about his gifts.  Some of his presents contained clothing.  Others contained toys.  Toys tend to rattle.  Clothes don’t rattle.  So smart little Aaron would pick up a gift and give it a shake.  If all was quiet inside the box, he would then toss it over his shoulder and move on to the next one.  It really was hilarious.  We caught him in the act on the video that we were making.  Shake and toss.  Shake and open.  Shake and toss.  And Aunt Sandra, after seeing the video that we mailed to her, declared that she would never send another gift of clothes to Aaron ever again! 

We laughed and laughed over that.  “But wait,” I said.  “Clothes are wonderful!  Maybe not to Aaron, but to us they’re great!!”  Gary and I knew the value of  clothing for our children when we lived under a tight budget.  Aaron could care less, but he just didn’t understand their importance. 

Life’s gifts come in all shapes and sizes.  Some we know right away are amazing and will be treasured forever.  Others are uncertain.  And then there are those gifts that we want to shake and toss away.  Gifts of hardship and pain……gifts that aren’t fun…..that definitely weren’t on our want list. 

I recently received a wonderful gift from some old friends of ours.  We came to know Bruce and Glenda at our first military duty station in Fort Carson, Colorado.  Then we were also stationed near each other in Germany.  Our kids played together when they were very young.  Bruce and Glenda live in Alabama now, and are flying me there to spend a few days.  I haven’t seen Glenda in years, though we’ve stayed in touch.  It’s a gift that I didn’t need to shake!  I knew right away what a precious gift it was.  I leave today, in fact, and am so looking forward to this getaway with a dear friend. 

Another gift of mine, in his own amazing way, is our Aaron.  Of course, he’s our son and I love him with all my heart.  His special ways of living life due to his seizures and autism, however, make him a very unique gift.  Trust me, there are plenty of days that I wonder about this large gift of Aaron.  There are many times that I want to shake and toss.  I want to shake and toss Aaron!!  But those moments are always balanced by the spurts of joy and laughter that he brings into our lives.  He’s the whole package, that’s for sure!

For instance, last Friday we were listening to a CD on our way to his day group.  He likes it when a song totally ends before he gets out of the van at Paradigm.  As we pulled up to the curb on Friday, the song seemed never ending.  I had errands to run and then an appointment at 1:00, so I finally told Aaron that I really had to go.  I told him that he could finish the song the next time we played this CD.  Aaron didn’t like that idea at all, but he finally agreed.  However, to register his disapproval, he gave me a resounding hit on my arm before he left the van.  It hurt!  And it made me very angry.  Yet off he strode as if nothing at all was wrong.

I drove away in frustration.  See what I mean?  Aaron can go from happy to hurtful in a flash.  It was a time I really would have shaken and tossed that gift.  Yet I know better.  I know that God gave us Aaron and that he is indeed a beautiful gift, not to be shaken and tossed, but to be opened and enjoyed.  It sure takes a lot of patience sometimes, though!  More than I often have on my own, for sure. 

Yet that evening, Aaron bounded in the house with a little wrapped butterscotch candy in his hand.  His driver, Paulette, had given Aaron a wrapped candy and then gave him one for me.  Aaron was so excited to give me this little candy, and wanted me to eat it right away.  It was close to supper and I told him I would wait.  Aaron made sure, for the rest of the evening, that I didn’t forget his gift to me.  He talked and talked about that candy. 

“It’s one of those sucking things,” he described.  And he ran up to my desk that night to retrieve the piece of candy and bring it to me, hovering nearby until I finally ate it. 

Aaron can go from hitting to hugging in no time.  From grouchy to giving.  His gifts are all over the place, but each one I must receive and enjoy.  Well, not always enjoy but at least try to understand and appreciate.

He stood in front of me one evening like this.

 

“Take a picture and send it to Andrea!” he said.  So I did just that as we both laughed at his silliness. 

He just came downstairs this morning.  One of the first things out of his mouth?  “Mom? What do you think of Megatron and Optimus Prime versing each other?”

And we’re off and running, as always.

I’m still unwrapping all the layers of this Aaron gift that we’ve been given.  And remembering the verse that I read this morning.

“For from Him and through Him and to Him are all things.  To Him be glory forever.  Amen!”  (Romans 11:36)

No shaking and tossing allowed.

 

Getting Aaron

I ran into Great Clips this morning, taking Aaron for another haircut, shave, and beard trim, and who greeted us but Erin!  Erin has worked there for quite awhile.  Erin loves Aaron, if you follow me.  She’s a mom, and just a very sweet person who genuinely loves seeing our Aaron.  So it’s always nice when Erin cuts Aaron’s hair! 

Erin is one of these people who just gets Aaron.  She was genuinely happy to see Aaron as we walked through the door.  She talks to him while she cuts his hair, asking him questions and interacting so well with him.  I just love having people like that in Aaron’s life.

 
I can tell very quickly if someone gets Aaron or not.  You don’t have to totally understand Aaron to get him.  Is this making sense?  There are just some people who from the first moment they encounter Aaron, are relaxed and accepting of him.  And there are others who look at Aaron like he has an alien head or something…..although Aaron would think that having an alien head is pretty cool. 

For instance, Friday evening Aaron and I went to Little Caesar’s for pizza.  The line at the take-out window was long, so I decided that Aaron and I would go inside to grab our pizzas.  As I parked, I gave Aaron the usual directions…..wait for me, don’t barge in the door, if there’s a line then don’t push ahead, please don’t clap, and please talk SOFTLY!!  Of course, I was trailing behind him as I finished my instructions and he was barging in the door.  Oh well.

Thankfully, there was no line, so Aaron had free rein to walk up to the counter, lean way over and loudly say, “Can I have some breadsticks??!!”  I was tugging Aaron back while reminding him to talk softly and also reminding him that I already told him he could have breadsticks…..when I turned and saw the cashier’s face.  She was staring a hole through Aaron while she wore totally no expression on her face.  There was no emotion at all from her.  She looked at Aaron like he was perhaps an alien, but a very boring alien.  Like she was thinking, “Who are you and why are you in my store?”   

Aaron was very excited and happy, totally oblivious to this girl’s cold stare.  He continued to interrupt as he loudly asked if we could get TWO pizzas as well as breadsticks.  Her eyes went from me back to Aaron, with her impersonal cold stare once again.  At times like that, I’m very thankful that Aaron doesn’t get social cues.  This girl didn’t get Aaron, but Aaron didn’t get that she didn’t get him, so in that respect all was well. 

But all was not well in my spirit.  I wanted to give her nose a little pinch and then deliver a lecture, but of course I didn’t.  And I know that maybe she was having a bad day.  Yet really, deep down, I just know that some people get Aaron and some people don’t.

Tuesday for lunch, Aaron and I met his case manager at Applebee’s for his yearly PCSP meeting.  Barb, from Paradigm, was there as well.  Aaron is as comfortable with Barb as he is with me, so she understood Aaron’s whacks on her arm, his too tight squeeze of her hand, and how he helped himself to some of the chicken on her salad.  It was our server, though, whom I especially noticed.  She made eye contact with Aaron, smiled at him, listened to him, and was genuinely relaxed with him.  I even looked at Barb and whispered, “She gets Aaron.”  And Barb knew just what I meant. 

When someone understands Aaron, it’s as obvious as the nose on their face….like that little girl’s nose that I wanted to pinch.  J  But it’s very obvious to me when a person understands Aaron, and even accepts him just as he is.  Sometimes being in public with Aaron is embarrassing, honestly.  He’s large, and loud, and totally blind to the effect he has on others by being “out there” with some of his behaviors.  He might point at someone because of their hair or whatever.  He might turn around in the restaurant booth to see what the people behind him are eating or saying.  He might stop to stare at their plates as we walk out of the restaurant.  And if he goes to the bathroom by himself during our meal, it’s very interesting to watch people’s faces as he walks by, his head high and arms swinging, often making funny noises with his mouth.

So when someone gets Aaron, I find myself relaxing some.  It’s as if I don’t feel the need to explain, which I usually don’t do anyway.  I shouldn’t have to explain Aaron.  He is who he is, in all his boldness and uniqueness.  But I’m human and I feel my face getting red when Aaron does something a little crazy that draws attention to us.  It’s nice to see others understand him even if they don’t really understand…..to accept him…..and especially to enjoy him. 

Having Aaron in my life has taught me to try hard to show understanding to other families I see who are probably uncomfortable in public.  I remember when Gary and I ate dinner at a local restaurant with some friends.  Our table was near a mom and dad who were eating dinner with their special needs son.  I noticed their son immediately.  He was stimming in his unique way, and I just knew what they were feeling.  I could see it on their faces, especially the dad.  So I finally made eye contact with the mother, and I smiled at her.  I pointed to myself and shook my head yes.  She was a little confused, so I just stood up and walked over to their table.  I spoke to her and her husband, and told them who I was…..and that I had a son much like their wonderful son.  They both visibly softened and relaxed.  They were so happy that I understood and that I spoke to their adult son, and that I got it.  That’s what meant the most to them….the fact that I got their son. 

So when you’re out and about, and you see an Aaron…..or most likely, when you HEAR an Aaron…..just smile at the parents with genuine love.  Even when their Aaron might pull one of the lower boxes of cereal out of the huge cereal box display….and mom stands there with fallen cereal boxes all over the aisle….smile and maybe even offer to help pick them up.  Yes, that happened to me.  And the help of a sweet teenaged boy was such a blessing that day!

There are special people all around us who need us to get them.  There are families of special ones who will feel a huge weight lifted off their hearts if you are that person in their lives. 

I get it!  You can, too.

Walking the Tightrope

I heard Aaron on the monitor early this morning, a little after 5:00.  I rolled over in bed so that I could hear better.  No, it wasn’t a seizure.  I listened for a couple more minutes and then knew that Aaron was awake.  Not only awake, but it sounded like he was out of bed.  Soon Gary got out of bed and went downstairs.  Aaron popped out of his room when he heard the footsteps and said, “Mom?”  But he knew it wasn’t Mom when he heard Gary’s voice, so he went back to his room while I listened again on the monitor.  Soon I got up, too, and went down to fill my coffee thermos.  I headed back upstairs and was in Andrea’s room, where my quite time desk is, and was quietly closing the door when once again Aaron quickly opened his bedroom door.
 
I was discovered!  He clomped up the hall and began to tell me about his head and stomach hurting.  His blood shot eyes also told a tale.  Aaron has started a new medicine this week, and every morning he has gotten up early……..much earlier than usual, but this morning was way too early.  Is it the medicine that is causing his sleep to be disrupted?  Does he really feel sick?  With Aaron it’s hard to tell because he tends to exaggerate aches and pains in order to either get sympathy or to be able to stay home from his day group. 
 
I ushered him back to his room while listening to him talk about not feeling well, and then he launched into a rundown of the latest movie that he’s watching.  I told him to hush about the movie, helped him take his sweater off, pulled back and straightened his covers, and finally talked him into getting in bed again over his protests that he wasn’t sleepy.  He kept talking.  “Aaron, Aaron,” I said.  “Just close your eyes and relax.  Don’t talk anymore about movies or about your head or stomach.  I bet you’ll go back to sleep.”  He wasn’t sold on that idea, but I could tell that he liked the feel of his multiple blankets on top of his tired body and that he was indeed relaxing.  I turned off his light and closed his door.
 
It wasn’t long before I could hear his steady breathing through the monitor.  Good!  He had fallen back asleep.  Hopefully he would stay in bed for a couple more hours, at least.  It was just a little over an hour later, as Gary was getting ready to leave for work, that I heard Aaron stirring and soon he was downstairs.  I waited in the kitchen to see what look was on his face…….what mood he was showing………when he came into the room with a smile.  Ah, relief!  He talked about not being able to sleep, about his head and stomach, and his movie once again……..but he was happy and I was hoping the pleasant mood would last.
 
“Mom!  I woke up at 5:09!  Why couldn’t I sleep?”  We talked about Aaron’s sleeplessness even as I reminded him that he did get an extra nap after he went back to bed.  I wanted him to feel rested and not to claim extreme tiredness as a reason to stay home today.  Soon I had talked him into eating some breakfast.  
I suggested boiled eggs and bacon, but he only wanted eggs.  He finally agreed to the bacon if I would make it crispy and not chewy.  Later he had his eggs and bacon along with his coffee as he was snuggled under his blanket watching a program on the DVR.  What a life!  Of course, the program he was watching was one that he started yesterday but he didn’t get to finish it.  Therefore, in true Aaron fashion, he started the recording over from the beginning.  He will NOT usually resume watching a program where he left off but will instead start all over from the beginning.  Some programs take several times to watch because of this regimented way of doing things.  He also presses the pause button every time he looks down at his plate to put food on his spoon or fork.  He cannot miss one second of his program………not one.  So it’s pause……scoop food……..look up…….press play……..chew and swallow……press pause…….scoop food……….
 
I mentioned this to Aaron this morning in a very matter-of-fact way so that he wouldn’t get defensive.  He confirmed that this is how he operates.  I just agreed with him and walked back in the kitchen as I left him to his pausing and playing, over and over and over.  There he sat, with his food and his multiple utensils and napkins and coffee………..with his particular way of watching his program………and his mother just smiling inwardly at this unusual son.
 
I got our supper in the crock pot and cleaned the kitchen while Aaron finished his pausing and chewing and playing.  He was very quiet, and I saw that his head was laying back though his eyes were open.  He got a little grouchy when I told him that I was going to shower, and that he should do likewise.  Later, I looked up the hall and saw that his door was closed.  When I knocked and then walked into his room, I saw him sitting at his desk, watching a movie on his computer.  Now his mood was different.  He was grouchy Aaron, and he let me know that he wanted me to leave him alone.  In fact, he took off his headphones and got up from his chair as he pointed to the sign that he had put on his door.
 
 
He was quite irritated that I had not seen the glaring sign………..the sign that told me to not only stay out, but to get lost.  Oh boy………here we go, I thought.  So I just told him that soon we would be leaving, and then I left his room as he closed the door behind me.  Surprisingly enough, the rest of the morning was pretty calm.  He allowed me in his room a few more times………he gladly let me help him with his belt………he listened while I explained that his tiredness was not my fault……….and he actually got ready to leave for his group without a fight.
 
He talked on the way to meet his ride about all the things that Aaron talks about, which is anything and everything that crosses his mind in that 10 minutes.  “Mom, I saw a boy walking a dog this morning.  That dog is full of fluffy fur!”   And off he went, only pausing for a brief comment here and there from me.  As we neared Quik Trip and the Paradigm van waiting in the parking lot, Aaron said, “Mom, tell them that I got up at 5:09.  Tell them about my stomach and my head and that I’m tired.”   I said, “So you want me to tell them that you got up a little after five?”  Of course, Aaron replied with impatience, “I got up at 5:09!!!!” 
 
Aaron played the part of being very tired as I conveyed to the driver that Aaron had gotten up at 5:09 and didn’t feel well, etc., etc.  He was satisfied then, got in the van, and off they went.  Off I went, too, driving to Sam’s and thinking of our morning.  I feel like I am walking a tightrope nearly every day.  Hearing that Aaron was up so early……..at 5:09!!…………..was how I started my tightrope walk today.  One foot gingerly in front of the other as I heard him stirring and then as I went downstairs, hoping that he wouldn’t hear me.  Silly me!  Of course he heard me.  I headed across my tightrope as he came out of his bedroom and as I helped him get back in bed.  I was steady on the rope as I heard Aaron sleeping again, but I wobbled when he came downstairs an hour later.
 
I kept my balance as I suggested breakfast and talked Aaron into eating something, and as we talked about his unique way of watching his recorded programs.  Things got tricky when I mentioned taking a shower and getting ready.  Then I really felt like I was going to fall off the rope when Aaron pointed me to his sign and abruptly shut his door again.  Wobble………get my balance………wobble………..get my balance.  Such is life with Aaron.
 
I couldn’t completely breathe a sigh of relief until I was driving away after conveying his message to the driver, being sure I got the 5:09 part correct.  This balancing act covers the complete spectrum of Aaron’s life………from serious new medicine issues and behavior problems and seizures………to whether he wants to eat a somewhat healthy breakfast or will refuse good food………to being told to stay out of his room.  Always balancing our decisions about Aaron and our direction with Aaron, wondering if we’re going to fall off that rope at any given time. 
 
We balance our reactions to Aaron as well, struggling to be patient and loving while knowing at times that we need to be firm and strong.   We balance our time spent with Aaron as opposed to our time spent doing what we want to do……without guilt.  We balance whether to listen to Aaron’s same stories or same issues over and over and over again, or whether to pull the plug and tell Aaron that he just needs to quit telling us this same thing….AGAIN!  And as time goes on, we will need to balance how to protect Aaron with how to release him. 
 

 

I’m just very thankful that we have God to steady us when we start going sideways.  Thankful that we have good family and friends who give us love and support and advice and laughter.  And very, very thankful that even if we do fall off the rope……….underneath are God’s everlasting arms to catch us and to gently lift us back onto the rope……….where we will once again put one foot in front of the other and once again walk this tightrope of life with Aaron.

Depressed? Feeling Sad?

 

Yesterday I drove Aaron to McConnell Air Force Base for a doctor visit.  He loves this time together.  We listen to music and there is much for Aaron to see and to talk about with mom…….who can’t go anywhere else but in the driver’s seat right beside him as he talks and talks and talks.  He talked about road construction and house remodeling that we passed; he talked about trucks that we passed; he talked about the purpose of U-Hauls; he talked about RVs and what they are and what they’re for and what they look like inside and do they have a bathroom and can we get one to take on our next trip back east; he talked about storage buildings and what people do with them and he remembered our storage building in Arizona; he talked about the guards at the gate going on to the air base and why they have to check our ID cards; he talked about all the planes that we passed at the airfield and why are they here and what kind of fuel do they use; and he even talked about the beer bottle he saw on the ground beside us at a stop light!  My ears were very weary by the time we opened the van doors and walked into the clinic.
 
I had already told Aaron in the van, after he made his famous farting noise with his mouth, that I did not want him making ANY noises when we got  in the clinic.  “OK,” he said……..and then made his other famous “POP” noise with his mouth.  “And not that noise, either!” I added.  And as always, he questioned, “Isn’t that better than the farting noise?”………and I reminded him that I said NO noises – farting, popping, or otherwise.
Check-in went smoothly and I was thankful that our name was called quickly.  After his weigh-in, we were ushered into the exam room by the little medic who looked like she might have been all of 12 years old.  She was sizing Aaron up, I could tell.  Aaron sat on the exam table and promptly began to take his shirt off and to tell her about the rash under his arm.  Our little medic was looking a little shocked, and I was telling Aaron to just keep his shirt on………but he was having none of that.  He was ready to get down to business, much like he does when he plows into Great Clips to see if he can get his hair cut, with me walking behind him as he practically yells out, “Can I get my hair cut!!??” 
So now his shirt was off and the little medic was a little flustered, but Aaron was already well into his story of the rash under his arm……….as he held his arm up high for our little medic to observe.  And she certainly could, since she was seated conveniently on the rash side.  I finally got Aaron to hush while our little medic collected herself and began to fill out the required paperwork.  She was struggling somewhat with whether to ask me the questions, or direct them to Aaron.  Finally, she got beyond the queries about phone numbers and the meds that Aaron takes.  She looked at me and began saying, “How would you rate…..” and then she finished the question by looking at Aaron……”your pain level?”
 
Aaron was absolutely delighted to have a question aimed at himself.  He had been chomping at the bit, waiting for this very opportunity…….and before I could even part my lips, he had launched into his answer.  “Well!!” he bellowed, “it hurts when I use soap on it!!”  Our little medic grinned and was trying to decide how to put this answer on her chart……and I’m quite sure that Aaron was hoping that she would tell him that he no longer needed to put soap under his arm, as taking a shower and actually using soap is not one of Aaron’s favorite priorities in life.
 
She glanced at the next question and then turned to Aaron……..not to me……..and asked the mental health question that is always asked at these military medical visits.  “Are you depressed or do you feel sad?” she asked Aaron, as he sat there grinning and wide-eyed at this attention.  Even I wanted to hear this answer, so I sat back in my chair and relaxed as Aaron pondered this unusual question.  But of course he had an answer!  “Well,” he said, “I’m tired of all this!!”  I had to laugh, for my own mental health, and our little medic was even beginning to enjoy this.  I have no earthly idea what she wrote on his chart, but now she was ready to ask the last question.
 
She turned again to look at Aaron as she asked, “So how would you describe your overall health?”  He didn’t even skip a beat as he answered, “Well, sometimes I have to blow my nose!”  I was seriously thinking that I would have to leave the room as I was about to explode with laughter.  I do believe that our little medic was wishing that she had more questions to ask.  She was relaxed and totally enjoying Aaron’s answers, especially as he expounded on the nose blowing comment by explaining that he doesn’t really blow his nose, but he wipes it on a towel that he keeps for that purpose and Mom doesn’t want him to do that………..right, Mom?……….but that it’s a towel he uses in his room, and on and on and on.  But it was time for our little medic to leave, and soon the PA and the doctor came…….which gave Aaron more opportunity to talk and to be listened to and to answer more questions, as I watched the PA and the doctor smile (they know Aaron) and try to follow his rabbit trails.
 
And all the while, as we waited for people to come and go from the exam room, Aaron had his eyes on the automatic paper towel dispenser by the sink.  He had talked to me about it and how much he liked those and did I know how they worked……….and I told him NOT to get off that table and go over there to get a paper towel that he did NOT need.  Soon it was time to go and Aaron was putting his shirt on.  I was intent upon looking at the PA and talking to her, when I heard a sound…………brrrrrrrrrrr. 
 
Yes, of course it was the towel dispenser.  Aaron made a beeline for it and was very happily holding the brown towel when I turned toward him with my mother look, and with an apology to the PA.  But she was laughing and said it was just fine, and Aaron probably would have held up his hand to get another towel if I hadn’t stopped him with my threatening look. 
 
Soon we were back in the safety of the van, where I let out a huge sigh and Aaron launched into his next list of topics.  “Mom, you know those little interviews they show before movies start?”  he asked. 
 
Yes, Aaron…….trailers.  He totally disregarded the trailer comment as he talked about seeing an interview for Iron Man 3…….”Can I see that movie, Mom?”   And the movie, Lincoln…….”I don’t know if I want to see that one.”  And of course, “Mom, can I see the Texas Chain Saw Massacre?” 
 
No, Aaron, you cannot see the Texas Chain Saw Massacre.
 
He shifted gears in his talking and said, “Mom, the other day when Katie was driving me home she asked me something and I said, ‘OK, babe!’, and she told me not to say that.”  So we discussed why he should not call women “babe” and what it means to respect someone and why the term “babe” is not showing respect………and before I knew it, we were home. 
 
I tell you, only Aaron can make a simple doctor visit into one adventure after another just by his conversations and his observations.  When we got home, and he was finished with his talking and went up to his room, I had some time to breathe and to collect myself. 
 
How would I answer the question on this day…………the question about whether I’m depressed or sad?  I worry about Aaron at times, and I get aggravated or embarrassed at times……but my goodness, he makes me laugh!  And laughter is good medicine for body and heart and soul. 
 
I wonder if our little medic thought of Aaron later that evening after work?  I hope she’s still smiling, too, and has a new insight into all the special people that will cross her path. 
 

Aaron’s good at that!