Wednesday, April 29, 2015

Spilled Water

Today Aaron had a dentist appointment to have his teeth cleaned.  He was happy about it, not because he likes having his teeth cleaned but because he knows that afterwards it means we hit the Pizza Hut buffet down the road from the dentist’s office.  Aaron and I happily walked into Pizza Hut, only to find one very busy server working hard to keep up with a rapidly filling restaurant.

We waited a long time while this poor overworked server was on the phone before she was able to break free.  She told us just to go ahead and pick a seat, but asked us first what we would like to drink.  Aaron quickly told her that he wanted water WITH lemon…..because Holly, who had just taken care of him during our trip to Houston, put lemon in her water. 

“Mom!” Aaron had said to me earlier this morning.  “Do you know what Holly puts in her water?”  Then he proceeded to tell me how Holly put lemon in her water.  “Can I put lemon in my water when we eat at Pizza Hut?” he asked.  And I told him that he could.

So when the busy server asked for our drink order before we seated ourselves, Aaron jumped on it and made sure that his water would have a piece of lemon.  When we sat down, and our waters came, Aaron said, “Holly squished her lemon and poured the juice out.  Will you do that to mine?”  So I squished his lemon and he watched me pour the lemon juice out into his water.  He was happy.

We walked over to the buffet line, where the salad in the large bowl at the salad bar was nearly gone, and there was no pizza left on the pizza side.  Poor busy server!  We were able to fix small salads…..Aaron’s with way too much dressing before I could wrangle the dressing ladle from him.  Soon we were able to get some pizza, too, and we sat there eating and chatting.

I looked up at one point to see that five Amish young women had come in and were waiting to be seated.  With them they had two small children.  They were such refreshing and lovely young women, I thought.  I watched as others stared at them, and I hoped I wasn’t doing the same.  It must be hard sometimes to always stand out as being different.  Finally they were shown to the seats right behind Aaron and me.  I pretty well knew what would happen when they walked past us. 

“Mom,” Aaron said.  “They have on hats.” 

“Yes,” I answered.  “That’s part of their religious beliefs.  And don’t stare or point.”

“I was watching her,” he continued.  “You’d say I was staring?”

Again I just cautioned Aaron not to boldly stare, so he continued eating.  Finally, we got up for one more trip to the buffet, and as Aaron was getting out of his side of the booth his arm knocked over his nearly full glass of water.  His water with all the squished out lemon juice went all over the table and down onto my side of the booth.  Thankfully I had already stood up, so I didn’t get wet.

Aaron apologized profusely, so I told him it was fine…..and told him not to be so loud…..and he reached his arm up to me.  I leaned down as he still sat there and he gave me a big hug.  The older man in the booth beside us stared even more than he had already been staring.  And as I turned to see what kind of mess we had, I made eye contact with one of the young Amish women.  She looked quickly away, but I knew she was watching us and probably wondering.  I knew that I felt the way she must often feel.

For the rest of our meal, I sat with Aaron on his dry side of the booth.  Our poor harried server never did make it over to clean up the mess, and that was fine.  I felt really sorry for her.  Besides, this gave Aaron and me a chance to sit close together.  He leaned his head on my shoulder, so happy that Mom wasn’t angry and that all was well.  I knew he felt so badly about what had happened, but I assured him that it was fine. 

He was very happy that I offered him my water, but I took my straw out so he wouldn’t get my cold.  He quickly grabbed his straw that was laying on the table in the mess of spilled water, ice, and soggy napkins.  He was content as he ate his pizza, not minding that the server never made it over to clean our table.  While he ate, he sang songs from Phantom of the Opera…..quietly……and he drank every drop of my water.

I was now facing the Amish women as I sat beside Aaron.  One of the young women that was facing me was pregnant.  I looked up at one point and our eyes met, and we both smiled at each other.  I wondered what she was thinking.  I wondered if she wondered about Aaron.  Wondered if she wondered what my life is like, just the way I wonder what her life is like. 

Aaron and I finally went up to the register to pay.  I had to run after Aaron at one point because he walked rapidly over to the buffet.  He was just ready to reach in with his bare fingers and grab some bread sticks for the road before I was able to stop him.  Oh Aaron!  You know better! 

Aaron and his messes that he makes!  In the short time that we’ve been home from Houston, we’ve had several of those messes to deal with and try to correct.  They may be physical……like me on my knees cleaning up certain spills and missed aims, if you know what I mean.  Or they may be messes created by his behaviors.

That’s why I was on the phone this morning with Bryan, one of the Paradigm staff that takes Aaron with him to work on houses.  Aaron loves working with Bryan, but on Monday Aaron had a meltdown at Paradigm and was mean to Bryan.  I wondered what Bryan would say when we talked, but he was amazing.  He really loves Aaron.   He really understands Aaron, as much as any of us can understand him.  And he knows that all he can do…..all any of us can do… clean up the mess and move forward.

Sometimes we have to sit in the mess awhile, like Aaron and I today in our watered down booth.  Sometimes there are no quick fixes or easy solutions.  Aaron sees the mess and the havoc it creates, but it’s important for him to know that he is still loved in the midst of it.  He is still cared for despite it all.  He felt bad about the water today, and he usually feels badly about the outbursts he has.  Yet he can’t always stop it when he’s upset, any more than he could stop the water that spilled so suddenly today. 

The damage is done, but I can still sit closely enough for him to put his head on my shoulder, and know that he is forgiven and loved.    Believe me, sometimes I want to run to another room….another house….another state!  But that’s not the solution, for Aaron or for me. 

We stay in it because we are all Aaron has.  God gave him to us for a reason, messes and all.  And we do love that big, crazy guy. 

Spilled water and all.

Monday, April 20, 2015

Along Came a Storm

Saturday was a day that Aaron had anticipated for a few weeks.  That’s because Saturday was the day we were celebrating Rosa’s birthday by eating with her family at Chili’s.  Aaron and Rosa are very special friends.  They don’t see each other very often anymore since Rosa has a new day group and a new residential setting.  These infrequent get-togethers are very nice for both of them, and usually very enjoyable for us parents.

I knew that Aaron was excited about going to the birthday dinner when at 10:15 Saturday morning, he asked what time we were leaving.  I told him that we would leave at 4:45.  He asked again a little after 1:00, and of course my answer was the same.  He told me that it was going to be a long time before we left, but he hurried back up to his room and got busy once again.  I was surprised that he didn’t ask about our leaving time again.  I expected at least two or three more queries, but he didn’t ask further. 

Aaron and Rosa were happy to see each other, in their own way.  Rosa opened Aaron’s gift right away, and soon was holding some of the colored pencils he gave her in her hand.  At one point, amidst the commotion, I just watched the two of them.  Rosa talked and Aaron responded as he listened to every word she said.  Aaron didn’t really look at her like you and I would, yet he was listening and answering. 

After dinner, Aaron and Rosa wanted Rosa to ride in our van to her house.  We had all planned to go to Rosa’s house for birthday cake, so off we went on a pretty drive through the country west of Wichita.  Storm clouds had been building in that direction.  They were beautiful to see as we looked out over the flat Kansas landscape.  The clouds, the lightning, and our radar told us that soon we would have a good old Kansas thunderstorm. 

Leroy and Louise’s house is an old family farmhouse, built in 1912.  They have remodeled it, and it’s just so lovely and interesting.  We thoroughly enjoyed walking around the yard, learning some of the history.  Then it was fun to take the inside tour, seeing original elements of the house that are still intact and appreciating the updating that has been done.  I loved seeing the various family pictures on the walls, a story waiting to be told for each one.

However, as we oohed and aahed and asked our questions, Aaron was becoming pretty perturbed.  He had lost interest in the house, the history, the beautiful views from the large windows, and even Rosa’s room that he finally got to see.  I was trying to enjoy this time with friends, but Aaron was demanding more of my silent attention……and then eventually my not so silent corrections as his attitude was becoming more evident.  When Gary and Leroy came inside, Gary joined me in our attempts to keep Aaron on track. 

It was time, then, to look at Rosa’s pretty cake.  The candles looked like crayons, perfect for Rosa.  She had jungle themed plates, cups, and napkins in bright colors.   Those were also perfect for Rosa because she was adopted by Leroy and Louise from a jungle tribe in Brazil.  Talk about a story!!  Now there’s one for sure!


We sang Happy Birthday, and then Louise asked Aaron to help Rosa blow out her candles…..which he did, by blowing them all out except for one.  Rosa didn’t seem to mind, thankfully.  But Aaron still wasn’t happy.  He was continuing to let us know that he was ready to go home.  We knew that arguing with him wouldn’t help at all, but only make matters worse.  He didn’t want to sing Happy Birthday (but then he really never does like doing that); he didn’t want to eat cake; he didn’t want to eat ice cream; he didn’t want to drink sparkling grape juice; and he didn’t want to sit and watch us do all those things.  But we did sit and enjoy our cake and ice cream and sparkling juice…..with Aaron lamenting that he wanted to go home.

The storm was picking up outside and lightning was flashing, which only increased Aaron’s insistence that we go home.  His agitation was increasing, too, just like the storm outside. 

“Aaron, you’ve wanted to come to Rosa’s house for the longest time.  Why are you acting this way?  Why do you want to go home?” I asked.

“Because I want to watch the storm from MY room!” he answered.

I wasn’t at all surprised by his answer, though I was disappointed at how unhappy he was.  He wasn’t out of control, but he wasn’t enjoying this time that he had said he wanted to someday have.  Time to see Rosa’s house and Rosa’s room and Rosa’s life.

But a storm had intruded, and suddenly nothing else was interesting to Aaron.  All of our talk was about a house and a history that surrounded this pretty house, while Aaron just wanted to see it all quickly and then go home where he could get back to his world and his house and his history……and enjoy the storm in his own room, where storms are meant to be enjoyed.

It seems selfish to us, but when you know autism you know that it’s really not selfish.  It’s just rigid.  It’s Aaron’s rigid way of living his life.  Yes, Aaron’s life is mostly about Aaron, but those realities are beyond his control.  He thought that he was using great control to stay as long as he did without a complete meltdown…..and I guess we should be thankful for that as well.

That evening to me was a perfect example of the saying about trying to fit a square peg in a round hole.   Wanting Aaron to just get over it…..wanting him to enjoy the talk and the tour…..wanting him to really get excited about the birthday celebration with the cake and the decorations…..wanting him to enjoy the storm at Rosa’s house instead of in his room at his house…..well, it just wasn’t going to happen.  We could hammer all day, but the square peg would NOT fit in the round hole.  Nope.  Not going to happen.

It’s embarrassing to Gary and me, but we do understand what makes amazing Aaron tick.  A storm in any other place is just not right.  He wanted his house, his room, his pajamas on, his way.  I’m glad we did stay and we did make Aaron stay, stretching him beyond his comfort zone without devastating him.  I’m glad that Leroy and Louise understand, and I hope that Rosa was happy with the evening.  I do wonder what she was thinking, but she also knows Aaron well. 

You know, if Aaron was blind I would never ask him to go walk down a busy sidewalk by himself, unassisted in any way.  If he was in a wheelchair, I would never ask him to go up or down a set of stairs by himself.  Aaron is confined, in a sense, by autism.  He is confined to a way of functioning that cannot be overcome by mere encouragement.  Just like I could not cheer him in a wheelchair into being able to conquer those stairs, I could not cheer him with my words or expectations into being able to function appropriately at Rosa’s house on Saturday night.  He cannot just ignore his autism…..cannot stuff it into a corner of his brain for an evening and act like we want him to act.  He does try, like he did at Rosa’s house, but it’s very difficult for him.  We see progress sometimes, and other times not so much. 

On the way back to our house on Saturday evening, the rain fell hard against the van.  Aaron was sitting in the middle seat, visibly relaxing as we headed to our house.  He went inside, talking happily, and quickly changed into his pajamas.  Later, we had some conversation about the evening…..what was fun and what we were disappointed in concerning his behavior.  Will he learn from it?  We can only hope.  We can only keep trying.

But most of all, we must keep understanding and we must try not to be too discouraged.   We all have ups and downs.  Aaron’s are just usually louder and involve the people around him, no matter who they are. 

Maybe that’s why he likes storms so much.  They’re definitely seen and heard, just like Aaron. 

We were sure that Saturday would find us slipping that round peg in a round hole with no problem.  We were sure that the evening would be an easy fit for Aaron.  But along came a storm…..

Who would have thought?


Friday, April 17, 2015

Aaron's Funny Comments

Aaron’s Funny Comments

In keeping with the name of this blog……He Said WHAT?......I decided to just share some of Aaron’s funny comments.  I keep notes on my phone, in a notebook, on slips of paper - just wherever I can quickly jot down what he says.  I can’t remember for long the unique way that he has of expressing himself, so I do lots of grabbing and writing.  Maybe this will give you a reason to smile today.  Here goes!


Chick Flick:  “Annie is a girl movie.  Not a boy movie kind of way.”


About his thinning hair, as he explained that he’s not totally bald:  “I don’t mean being bald in one spot.  I mean being bald on different parts of my head.” 


After hitting his knee on the wall:  “I think I knocked my muscle!”


Aliens:  “That alien had a mad eye.”


Accents:  “What kind of accent are they from?  British?”


Aaron:  “Barb listens to Zach Brown.”  Me:  “Does she like them?”  Aaron:  “I don’t know.  I didn’t get to that yet.”


Commercial for Olive Garden:  “I remember when I got sick at Oliver Garden.”


Famous name:  “Sir Francis Bacon reminds me of food.”


Why does he need two deodorants?  “I’m separate.  I keep one in the bathroom for after I shower, and one in my bedroom for night.”


Coupons:  “Do you think razor coupons are getting famous?”


Basketball:  “Your Wichita State is the one with the blue suit on.”


Sponge Bob:  “I’m not a Sponge Bob cartoon watcher.”


Money for mall food:  “You didn’t give me enough for $5.36.  You only gave me $5.24.”


Describing shrimp:  “It’s a twist thing.”


Eating pizza:  “There’s a piece to a sausage on the floor.  Can Jackson have it?”


Letting Jackson lick his milkshake cup:  “I’m just giving him the pieces that are on the wall of the milkshake.”


After his tooth was filled:  “The hurtness is almost gone.”


Describing a tea bag:  “Where’s the tea filling?”


I hope that some of these Aaronisms made you smile, and maybe even laugh, today.  I whittled down some of my list, but there are many more where those came from.  And as soon as Aaron zooms in the door today, I better be ready to hear some more. 

Enjoy your world today, everyone!  Pay attention to every detail, because you just might miss something if you don’t.








Monday, April 13, 2015

The Slow Train

Imagine that every day when you drive away from your home to run errands or to go to work, you must cross a train track.  Imagine that every single time you come to that train track, there is a train on it, traveling ever so slowly.  You must wait on that train to pass before you can cross the track and continue on your way.  Then when you drive home later, the same thing happens.  Any time you try to cross that train track, no matter the time of day or how many times you have to drive over that track in a day, the same thing happens.  Over and over again, you must stop and wait on that train to slowly pass.  You begin to dread it and you find yourself very irritated about this slow moving train.  Some days you handle it better than others, but eventually on a bad day, you find yourself saying, “I hate that train!!” 

This is how I sometimes feel about autism.  Not Aaron, mind you…..but autism itself.  I love Aaron so much.  I love how unique he is… he views the world while opening up his view to me……all the many, many lessons he has taught me over the years as I have lived with him….all the times that he has made me laugh at the funny things he says. 

But some days it’s like running into that slow train every day.  On those days, if I’m tired or troubled, it can be especially difficult to remain upbeat or to see the fun in Aaron’s way of living in his world.  That’s because his way of living in his world usually involves me to some degree, and often that involvement causes me to stop what I’m doing and do what he wants…..or demands.  Just like that slow train that impedes my day, at times Aaron’s rigid routine makes me stop what I am doing while I meet his needs.

For instance, his bedtime routine at night.  At night, when I am more tired.  He absolutely does not want to go to his room to get things situated unless I go with him.  He wants me to help get his blanket on the bed just right, close his blinds, set his clothes out for the next day, and say goodnight in his room near his door…..not out in the hall or on the right side of his bed, but in his room near his door on the left side of the bed. 

If I am on the computer he will come to stand behind me and he will hover.  He is waiting for me to come up to his room for the bedtime ritual.  If I tell him to go on and brush his teeth and take his pills, he will do that and then return to stand behind me and hover some more.  I just know that he will not go to bed unless I stop what I am doing and go with him.  There’s that slow train, every day the same.

Or getting his coffee in the mornings.  When Aaron comes down to the kitchen, he wants his coffee.  I don’t mind that at all, unless he’s demanding.  But he will linger as he waits for the coffee to finish perking, if I’m making fresh, and he will linger as he waits for me to pour the coffee.  And he really wants me to carry it upstairs right away.  The other morning he was hovering, wanting me to pour his coffee.  I poured his cups of coffee and went back to what I was doing.  I always carry his coffee up to his room because he is so shaky that he spills it.  So he stood there, hovering, waiting for me to carry his coffee upstairs. 

“Are you carrying my coffee to my room?” he asked.  I told him that I would get it in a minute.  He walked in the living room, but soon was back in the kitchen…..hovering again. 

“Are you getting my coffee?” he asked again.  So I told him to go on upstairs and take his shower, and I would bring his coffee up while he showered.  This didn’t suit him at all. 

“Mom!” he said with impatience.  “Aren’t you getting my coffee?”  He started walking away, but I knew we weren’t done….and I knew I would need to carry his coffee upstairs now.

This made me very irritated on this particular morning.  I rinsed my soapy hands off under the running water at the sink.  And thinking he couldn’t hear me, I muttered, “I hate autism!”

But Aaron did hear me.  He heard my careless remark, and he did not like it…..not one bit.  Since that morning I have had to do some damage control.  I’ve explained to Aaron several times what I meant when I said those words, assuring him that I did not mean that I hate him.  I reminded him that Granddaddy died of cancer, and that I hate cancer.  I told him that Grandmother has Alzheimer’s and that I hate Alzheimer’s.  I’ve explained that I hate his seizures.

Explaining to him why I sometimes hate his autism has been a little trickier.  I’ve talked to Aaron about how sometimes life for him is very stressful because of his autism and how it makes some situations difficult for him to handle.  Aaron really doesn’t want to go into great detail about those things, though.  And I don’t either, because I don’t want him to feel that I think his life is bad or hard.  I wish I could take back that moment, and that I hadn’t said those words in my frustration.  Yet on the other hand, at least it’s opened up some conversation between us and enabled me to talk openly to him in a way I don’t normally do. 

Aaron and I were watching a movie on Saturday night, one that he had looked forward to watching with me.  Suddenly he turned to me and said that he was having a dream, and then went into a big seizure.  Gary and I stayed with him, and when he was able we went upstairs to his room so he could go to bed.  The movie would wait until another night.  I got his bed covers all ready while he brushed his teeth.  His head was hurting from the seizure, and he was slow and weak.

Despite how he felt, though, he went about his bedtime routine as he normally does.  I watched him carefully place his stuffed snake and skunk in the bed, under the covers, just right…..and then pull the covers up just to a certain point.  I watched him open his notebook and record the time he was going to bed, so meticulously.  I watched him make sure that his back scratcher and other items were on his desk where they belong….that his clock light was dimmed…..that his glasses were just where he always leaves them beside his watch that he was sure to remove from his arm. 

His routines are his life.  Even when he feels terrible after a big seizure, he still maintains his definition of normalcy and routine.  I do admire him for that.  He’s so determined despite how his body works against him.  So strong even though he’s weak at times like this. 

Yes, I do hate autism and how it has altered Aaron’s life in huge ways.  It has also altered my life in huge ways.  But I do need to be careful not to let my anger at autism be a cause for hurting Aaron’s heart.  I think he understands my statement from the other morning.  I still wish I hadn’t said it.  Lesson learned, I hope. 

That train will be on that track every single day.  I can’t change its path or its inconvenience in my life.  But I can change my attitude, and when I feel like muttering useless words I need to pray instead……count to 10 or to 100……go sit in the flower bed with Aaron for some mulch therapy……clap a few times like Aaron does to relieve my tension…..whistle or whoop out loud with Aaron…..

Poor Gary.  I don’t know if he could handle two of us in the house.


Sunday, April 5, 2015

Because He Lives

While enjoying a dynamic Easter service this morning, I was struck with the words from the familiar song, Because He Lives.  This old song by Bill and Gloria Gaither, written in 1970, can be sung by memory for most of us.  As I joined the congregation in singing the words to the second verse, my mind thought of Aaron.  It struck me forcefully and yet sweetly how much these words give me comfort concerning Aaron, in a way I hadn’t really contemplated this deeply before.  The reality of what a living Savior means to us as we deal with Aaron’s future and the seriousness of his seizures washed over me with great peace and hope. 


How sweet to hold a newborn baby,

Aaron, soon after birth

And feel the pride and joy he gives;


But greater still, the calm assurance,

Aaron - Video EEG

This child can face uncertain days because He lives.

Seizure day

Because He lives, I can face tomorrow;


Because He lives, all fear is gone;

Seizure day

Because I know He holds the future.

Newborn Aaron

And life is worth the living just because He lives!  (Bill and Gloria Gaither)

No matter what each of us is facing, we can face it with the calm assurance that Jesus lives, and in Him we will have all we need to face whatever the future holds

Wednesday, April 1, 2015

Shaky, But Not Shaken

Yesterday Aaron rushed in the house when he came home from his day group.  He had a huge smile on his face, but he had something else, too.  He was wearing bright yellow shades, as he calls them, and he was quite happy with his new look.  His huge smile was as bright as those sunglasses that Bryan had bought him that afternoon.  He let me take a picture to send to Andrea, Andrew, and Megan, and he was happy with their responses. 

Now today we’ve gone from that happy scene, to this:

Most of you know what this picture means.  Seizures.  How quickly things can change.  Poor guy!  Such awful seizures…….and all the awful side effects and results that go along with them are what he’s facing today.  Gary knew before bed last night that it would be a seizure night for Aaron, but I wasn’t so sure.  Well, he was right so here we are again as I listen to Aaron breathing deeply while he sleeps on the couch, his fourth seizure over as I hope there are no more.

It’s a beautiful spring morning here.  I’ve opened some windows, enjoying both the gentle breezes and the sweet sounds of birds outside.  In our front yard, just off the front porch, we have a large Golden Rain tree.  I noticed the other day, after some stout winds, that we had some small twigs scattered around the yard under the tree.  Nature had once again done her pruning work on our tree.  At other times, during strong storms, we have had very large branches scattered over our yard.  I was thankful that this wind only brought down small twigs that I will rake and throw away. 

Yesterday morning, as I finished reading Psalm 21, I was struck with verse 7.  David wrote, “For the king trusts in the Lord, and through the lovingkindness of the Most High he will not be shaken.”  Pondering that verse, my mind went to our Golden Rain tree.  That tree has been shaky, many times, as it’s buffeted in the Kansas winds.  Yet while it’s been shaky over and over again, it is not shaken.  That tree still stands tall and strong, minus some branches and many twigs, but not destroyed. 

Shaky sometimes, but not shaken.

I find myself there in life, over and over again just like our tree.  I’m especially thinking of that fact today as Aaron lays nearby, recovering from his latest seizures.  Things sure do get shaky sometimes in life.  I’m tossed around by the winds that come my way…..that come to all of us at one time or another…..or multiple times.  I know that God can use those winds to prune me, to take out of my life attitudes that I don’t need, and to shape me to love Him and serve Him more.  God’s pruning occurs best in the shaky times.

However, I’m not shaken.  That’s because I, like King David, have trusted the Lord.  I realize that through God’s lovingkindness……there’s that word “hesed” again……I will not be shaken.  God’s love is a covenant love, never ending and never wavering toward me, His child.  The Hebrew word for “shaken” here means to go off course or to waver.  That’s what I never need to do because I am wrapped in the unconditional love of God.  I know that He does what is best, always, even when I don’t understand it. 

I may look at life through tears.  I may look around me and see the tossed about twigs that come from going through the shaky times.  But I also know that because of God’s faithful, enduring love…..because He is sovereign and never makes mistakes……that I can still be found standing strong, unshaken.  Just like our tall, beautiful Golden Rain tree. 

Shaky, but unshaken as I watch Aaron sleep this morning.  I know that Aaron is in God’s loving hands as well.

Tomorrow?  Tomorrow will be a day for wearing bright yellow shades again.