I'm Patty, and my husband and I are living with our adult son who has autism and epilepsy. I love sharing lessons learned from life around me, especially life with Aaron.
It was 14 years ago that I sat in the exam room of a pediatric neurologist in Tucson, Arizona. I tried to talk quickly to him about the reason that I was there, because the reason that I was there was sitting by himself out in the waiting room. There sat Aaron………..or at least I hoped he was sitting and not roaming……….all by himself while I tried to convey to this new doctor our concerns for Aaron. There were things that I didn’t want Aaron to hear coming from his mother’s lips. I didn’t mind talking in his presence about the seizures that he had battled for 7 years. Seizures were out of his control……..out of our control………no matter what drugs he was currently taking. Seizures were a medical issue. But his behaviors that were increasingly disruptive and odd…….his social awkwardness and lack of friends during this pivotal time of…
Here we go again. I heard it from upstairs…….the sound of the plastic containers full of coffee hitting the floor and then the thump. My heart sank as I hurried downstairs to check on Aaron. He was fine, although sprawled on the floor with spilled coffee all around him. He jerked and dropped his coffee yet again………lukewarm coffee, thankfully. And thankfully he didn’t throw his coffee containers as he has been known to do when he’s in a rage. This was a true accident, but messy and discouraging none the less.
I was frustrated with Aaron this morning over a couple things already and this didn’t help, believe me. My compassion for him still hasn’t quite kicked in yet. He has cleaned up and showered, and seems to be fine. I hope he’s not bruised.
I just stood and looked at this mess………coffee all over the floor, the cabinets…
Gary and I just returned yesterday evening from a trip to Houston, where we got to see our daughter and her boyfriend, and our son.Aaron stayed in Wichita, where our friend Amber and her family provided excellent caregiving for him.He has so much fun eating out, watching movies, and just generally being the center of attention.And we have so much fun seeing our other kids, and having some time to ourselves.It’s a win-win.
Before we leave on a trip, Aaron is very excited at the prospect of us being gone.Remember, no filters equals complete honesty from Aaron.But of course, while we’re gone he calls multiple times every day.I had told him over and over that while we were at the race track where our son works that I wouldn’t be able to answer the phone because it was too noisy to hear.That didn’t deter Aaron one bit.He never left a message, but just pursued calling until eventually, even hours later, I would answer the phone.
“HEYYYYYY!!” Aaron would say with great enthusiasm……as if we hadn’t talked in weeks instead of it being just hours.And then he would launch into the story of his latest happenings at home or at his day group……what he had eaten and where……what Amber or one of her kids or her husband had done……what our Great Dane was up to……..what movies they had watched……and various other stories and comments.He never asked what we were doing or how we were, and I certainly would be surprised if he did.
In between all his phone calls, we did have a wonderful time in Houston…..despite the horrendous traffic that we often found ourselves a part of……and seeing or hearing of multiple fatality accidents, with detours and delays.Oh Houston, you are so huge and exhausting!
We got to see Andrea’s genetics lab that she has gotten up and running.Quite an accomplishment!!She is now the lab manager.We were privileged to meet her genetics director and hear some very affirming things about our daughter, which thrills the heart of any parent.
Andrea and Gary
We got to spend some precious time with Andrea’s boyfriend, Kyle, who is working hard to complete his degree as a ship’s captain.Between his studying, projects, and work, we were very happy to see him when he could spare the time.We also got to eat dinner our first night in Houston with him and his dear parents, Kent and Marie.
Andrea and Kyle
We got to spend time at the NHRA racetrack in Baytown, watching Andrew as he works with Cruz Pedregon Racing.We saw Cruz run his career best time!And again, we heard such nice comments about Andrew and were thankful for the impact he is having on others there.
And let’s not forget that we got see our adorable granddogs, Darcy and Oakley.We also got to see Aries, Kyle’s dog, but silly me forgot to take a picture!
Andrew got to have some rare time for us to get together on Sunday evening for a visit to Andrea’s apartment, and then dinner with all of us together.Times like this happen so seldom for us, and we were very thankful for every single minute together.
Aaron was happy to see us when we got home, although he didn’t want to hug and he didn’t want to act TOO glad to see us.But he followed us around most of the evening, talking and talking.Then this morning……did I really hear Aaron get out of bed at 5:25?!And did I really hear Aaron NOT go back to bed soon after?!Yes, indeed I did!I was looking forward to sleeping in just a little instead of getting up at my usual 5:30, so I closed my eyes and hoped……
But no, Aaron was awake for good.Gary was downstairs, where Aaron went at first, and then back upstairs he thumped.I got out of bed a little after 6:00 and walked into the kitchen to the beaming face of Aaron.My, what bright eyes he had on this VERY early morning!!
Gary had gotten Aaron’s coupons from the Sunday paper out for him to cut, and so his coupon cutting station was all set up on the floor in front of the television.This gave me some time to read my Bible and drink some coffee, preparing myself for the Aaron onslaught I knew was soon coming.
Sure enough, as soon as Aaron heard the door open and knew I was finished, up the stairs he lumbered and into the room he came.I was getting ready to iron Gary’s work clothes, so Aaron sat on the bed where he could look at me and talk to his heart’s content.
I decided to write down a few of the things Aaron said while I ironed and then on through the morning so you can get an idea of what I mean when I say that Aaron talks a lot.I mean, a LOT!!This is only a mere fraction, mind you.
Aaron, while on Andrea’s bed watching me iron:“The big slug aliens, they had also legs.They screeched!!”
“This is how I sit when I cut coupons.Then my leg hurts!”
“You want me to cut diaper coupons?Do you want me to cut wipes coupons?”
Then back downstairs, where he was watching the movie Battle of Los Angeles:“Mom, this is the OLD movie.The new movie doesn’t have ‘of.’It was only Battle Los Angeles.”
“Where is Los Angeles?”
“The hideout that comes down to earth, that brings their little ships.”
“Why does the military go in the hideout?”
“They put detonators in there and blew up the hideout!”
“The woman military is cute.”
“I didn’t know a woman could be a fighter!”
“Why do they make every alien giant and look like a slug?”
And on and on and on and on he went, until finally I was able to make a legit exit to my bedroom and lock the door while I got ready.But eventually I had to unlock the door, where Aaron promptly entered and continued his monologue as if nothing at all had interrupted him.Finally, it was time to take him to Paradigm.
“Guess what time Amber took me to Paradigm?” he asked.
And before I could answer, he breathlessly told me.
“9:13!” he exclaimed.
He waited for my sure response, as if 9:13 was the most amazing time to leave for Paradigm……and mom’s usual time is, of course, very sub-par.
“9:13?” I asked.
“Yes!!” he replied.“She took me at 9:13!”
I’m still not quite sure what magic there is in leaving at 9:13, but to Aaron it was impressive and he wanted it to be for me as well.That, along with giant slug aliens that had also legs and the woman military who was cute and could fight and ships and detonators and diapers……it was just altogether a very impressive morning, let me tell you.
Home sweet home in Kansas…..where the wind blows a lot and Aaron talks a lot.
Sometimes refreshing and sometimes it rattles the nerves, but it’s home.
War: A struggle or competition between opposing forces or for a particular end
According to the above definition, Aaron and I are in a state of war. We are actually in a state of war on two fronts. One front has been ongoing for a long time…………the other is fairly new, but escalated today.
Moore War One: The Fan Wars Aaron has a tendency to get hot. Not hot as in angry……well, sometimes he does do that…….but hot as in just hot……like sweaty hot. Yuck! Of course, it could have something to do with the fact that he often has his fuzzy blanket thrown over his lap as he sits at his desk and is on his computer. And under that blanket may very well be long pajama pants, slipper socks AND slippers, and even a long sleeved shirt. Never mind that we’ve told him time and again that he…
Last night I enjoyed a beautiful light and sound show, thanks to our great Creator God. Just as we were turning in for the night, a pretty significant Kansas storm was cranking up. Aaron loves storms, and so he was getting all ready to sink into his covers and watch the lightning through his windows that he faces from his bed. Of course, that was after he made sure that all of his covers were just right and that his clock that was flashing from a previous short power outage was reset – using my cell phone as his reference point since his portable digital clock is broken. I hoped he was settled as I finally made my way to bed.
I’m sleeping in Andrea’s former room right now due to a shoulder injury that causes much tossing and turning on my part, along with pillows and grunts and…
Last year, especially in the fall, we were having a terrible time with Aaron’s behaviors.He was generally miserable, and so therefore everyone around him was miserable as well.Poor behaviors, no filters, and an inability to figure out cause and effect, can certainly produce some headaches for everyone.It’s the side of autism as well as the effects of seizures, at least for Aaron and for others that I know, that is most difficult to understand.Difficult, too, to have compassion and empathy for our adult Aaron when he is hurtful with his words and careless with his actions.
Aaron seems so high functioning.He is, in many ways, just that.So it’s very hard to decipher when he is manipulating us and being willfully disobedient, and when he is truly on a track that he just cannot control.
We see a wonderful psychiatrist for Aaron’s autism.Gary and I resisted any drug intervention for a long time, but eventually years ago we decided it was time to see if medicines would help Aaron. Several have been tried over the years. We feel that we have found a beneficial drug now.The change in Aaron has been dramatic, for the better.Perfection?No.But the improvement we’ll take, for sure!
Since we increased Aaron’s dose of this medicine in January, he has done so well at his day group and at home that it’s been like a vacation.Well, not totally – but definitely we have seen positive strides.
But then this week happened.It’s not been over-the-top awful with Aaron, but he hasn’t been his chipper and happy self as much as in the past few months, either.He had been collecting steam for two days, disgruntled in the mornings and just very edgy.Yesterday morning he was fully on track for a bad day, and I didn’t have the ability to derail him, try as I might.
To add to the volatile mix, I am very vulnerable right now.Honestly, I don’t handle holidays very well sometimes.That’s because I miss our two kids who live too far away to come home quickly.My loneliness for them runs deep during holiday time…..any holiday……and I am more emotional.Easter is this Sunday.I love what this time of year is all about.I long to live every moment in the victory that is mine in Christ.Then along comes Aaron…..
God bless him!I picked him up from his day group yesterday.For maybe one minute things were fine.Then he told me that he had given his money away….again….and that he did do this and didn’t do that.And I was just done.I didn’t yell, but I lectured, which is almost always ineffective with Aaron.We can do this and we won’t do that and maybe so-and-so……And I was cold and distant, which makes Aaron feel abandoned.
We were home, I was in the kitchen, and Aaron kept coming in to say one more word…..to throw one more barb at me.It’s amazing to see how he thinks.How I can be making a profound point, eyeball to eyeball with him, and then to have him open his mouth and still be way back at where he was in the beginning, totally not connecting things the way most of us would.
He finally bent over, hands rubbing furiously together like he does when he’s excited…..but this time he was NOT excited……and his eyes were wide and wild.
“I don’t love you anymore!!” he said through firm lips.
And he waited for my response.I turned my back and it hit me.I am vulnerable.I am tired.I am emotional.
It’s the perfect time for Satan to attack.He is no gentleman.He loves to kick Christians when we are down.I knew that the adversary of my soul would have been thrilled for me to lash out at Aaron with my words……to release all my pent up anger at him……and then to blame my reaction on Aaron and on my emotions and even on the upcoming holiday!
I had asked some friends earlier in the day to pray for Aaron.I know they were praying for me, as well.And there in the kitchen, with my back to angry Aaron, I prayed, too.I asked God for peace, for wisdom, and especially for Satan to be defeated right then and there.I claimed God’s power over our home and over this situation, recognizing that His power was and is all that I need.
I hoped for time with Gary alone when he came home from work, before Aaron bombarded him unexpectedly with all the sordid details of the day.That doesn’t often happen, but God was so good.Aaron was busy in his room when I saw Gary’s truck pull in.I was able to meet him in the garage, where he knew right away that something was wrong.We had alone time to talk before Aaron burst through the door.Gary was ready then, able to be kind and calm, with understanding.
I was amazed at the happy Aaron that came in the house soon after!He ate supper with us and acted as if nothing happened.I was so thankful!And after Gary and I cleaned the table, Gary told me to come with him as he headed out the door for a walk around the yard.That sounded wonderful to me!
But it also sounded wonderful to Aaron, who of course knew what we were doing.My heart sank a little as he followed us outside.He didn’t care that he was wearing his pajamas already…..didn’t care who might see him……didn’t care that he wasn’t wearing shoes.So I told him to take off his socks, and he happily joined us for a stroll outside.
It actually turned into a very sweet time.Gary showed Aaron the sunflower plants that were popping up in the garden from last year’s seeds that had dropped in the soil.Gary pointed out the deer tracks all around, the toad jumping in the water, the clearing he’s been doing out back, and the new grass seed planted.He pointed out an ant hill and how busy the ants were working.
He showed Aaron how the oak tree is budding and how the buds look like baby pineapples.
He showed Aaron the oak tree seed pods that fly like a helicopter when you throw them in the air…..things that Aaron knows but that are fun to see again with fresh eyes.Then Aaron threw one up and watched it land.
Suddenly Aaron remembered something that HE wanted to show Gary.It’s something that I had pointed out to Aaron a couple days earlier.
“DAD!!!Come look at this plant!” Aaron insisted.
We followed Aaron, with me knowing where he was headed, and we found him standing there just staring at the Lilac bush.I love the way he stops and stares at things that interest him, as if he’s absorbing every detail…..which he probably is.
Aaron then leaned over and smelled the sweet lilac scent, and Gary and I followed.
I was filled with more than the smell of lilacs.I was filled with reminders of how important it is to give Aaron time…..time to work through his frustrations and anger without losing mine.Time to hopefully express himself better.Time to join Gary and me in a few moments of simple pleasures.Time for him to see and to know that he is loved.Time to hopefully show him how to live in thankfulness for all that God has given him.
If I’ve learned anything with Aaron and with autism, it’s that taking time is absolutely necessary.
I encountered a very simple yet perfect illustration of autism this past Saturday, at least autism for Aaron.It wasn’t a profound experience, but was – like I said – very simple, yet spoke volumes to me.
I decided to plant a few flowers in an empty spot in one of the front flower beds.I also needed some mulch.Aaron is like a dog sniffing the air on weekends, waiting for one little whiff of either me or Gary running an errand.Then he’s on it!He wants to go with us, no matter where we’re going.I do know I would cross the line if I told him I was shopping for clothes.He would nearly go anywhere but clothes shopping!
I told him I was going to a couple nurseries to look for flowers and mulch.“Can I go?!” he immediately asked.And of course, I said yes.
Off we drove, with Aaron turning on his latest CD choice.He rubbed his hands together and gave his low chuckle as he listened to the song that played.He LOVES hearing music while we drive, his latest CD always on the very beginning of the current song selection……because Aaron will never, ever exit the van until the song he is listening to is over and the next song number pops up.Off goes the CD quickly before the song starts!That way, the next time we get in the van, the next song is all ready and waiting for Aaron to push the “on” button……and away we go, happy as can be.
We eventually ended up at Denning’s Greenhouse.Aaron and I walked into the section where I hoped to find the flowers I wanted.I was immediately struck by the beautiful hanging baskets with their unusual fluffy flowers hanging down.
“Look, Aaron!” I exclaimed.He reached up to touch the soft growth and I let him.They were so pretty and so soft!I was going on and on about them, but Aaron had seen and had touched and he was ready to move on.
But everywhere I turned there was more beauty to behold.The large yellow flowers….
The dainty purple and white blooms……
And then I saw the one that always makes me laugh….
“Aaron, see this one?It always reminds me of my hair!” I told him with a laugh.
But Aaron was less than impressed.In fact, all through the nursery he was sighing and becoming impatient.Aaron, who usually loves the unusual, was acting bored and very ready to leave.Was it too warm?Too colorful?Was Mom acting too weird?
Probably that last one.
So I went to the pretty little Verbenas growing all in a group, and I began to choose the three I wanted.
Aaron stood there sighing.
“Why do you have to pick out flowers?” he dully asked.He was the epitome of rank boredom.You would have thought we were clothes shopping!
I knew it was time to leave.No exploring the other greenhouse to check out garden veggies for future planting, I decided.I was a little mystified by Aaron’s lack of interest in all the different plants, but then again we never totally know about Aaron.Who can tell, but Aaron, why he is interested in one thing one day but not the next.
I was busy at the register paying for my three little Verbenas.I wasn’t aware that finally something had grabbed Aaron’s attention.
Onions.Yes, common everyday onion sets in a little net bag.
“MOM!!” I heard him say loud and clear.
I turned and saw him holding the small bag up to his face, his nose planted in the mesh.
He lowered the onions and turned to me.
“MOM!!” he said again, loudly.“SMELL THESE!!”
So I stepped over to him and he held the bag up to my nose.I took a deep sniff while Aaron laughed happily.
“Those are ONIONS!!!” he told me as if I had no idea what I just sniffed.
“Yes, they are!” I replied.And Aaron did one more face plant into the net bag while he sniffed with joy.
“Those are ONIONS!!” he exclaimed again as we walked out of the nursery.Everybody there knew that those were onions at this point.
“They hurt my NOSE!!” he informed me, and everyone else, as we opened the door.
I just laughed.Aaron has always had a fascination with onions and with how they smell, so I wasn’t surprised at his unusual show of delight over a simple bag of onion sets.
I thought that surely Aaron would show the same level of enthusiasm for all the unique and pretty flowers that we saw blooming in the nursery.And maybe on another day he would.But for whatever reason, on this day, the blooms and colors and shapes did very little to interest him.
He was drawn to what I didn’t notice.And how true this is of Aaron’s life!He notices what to me is mundane or common or just off my radar, and he makes it into the grandest thing ever.
It might be funny……or embarrassing……or awkward…..or frustrating, to us.But it’s none of those things to Aaron.He immerses himself in the moment, and tries to take us with him.
We can hardly ever make Aaron enjoy what we enjoy if his level of interest just isn’t there.He can’t even fake it!We know, trust me, if Aaron isn’t into whatever we want him to be excited over.
He Said What?! 