A Sometimes Wonderful World

Aaron was with me all day on Monday because he had a doctor appointment in the morning.  Afterwards, we swung by the eye doctor to have his glasses adjusted; went to Taco Bell for lunch, which was the real reason that Aaron was happy to be with me; and then to Wal-Mart, his second real reason for being happy.  I experienced quite a few autism moments, too many to remember them all……for after all, Aaron’s whole being is influenced by autism.  So is mine.

There was the ride in the van across town, and Aaron’s excitement about listening to the CD he had chosen.  Pop Memories of the 60’s was quickly inserted in the player, and then Aaron’s instruction as he held his hand up, palm facing outward:  “Don’t talk.  I want to listen to the music.” 

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The number 1 showed on the CD player, so Aaron reached down to quickly pick up the CD holder and announce in his monotone voice, “Stevie Wonder.”  He bent over again to place the CD holder back where it had been.  The song began and Aaron said, “Mom, do you like Stevie Wonder?”

Notice who’s doing all the talking.

So we listened to “My Cherie Amour” as memories of high school flooded by brain.  But I didn’t share that with Aaron because I wasn’t supposed to talk. 

Then number 2 came on the player, so Aaron bent back over to pick up the CD holder.  “Kenny Rogers and The First Edition,” he again announced.  And back down went the CD holder.

Number 3:  Pick up holder…….“Tom Jones,” Aaron flatly said…….replace holder. 

Number 4:  Pick up holder…….. “Mama Cass,” was announced……replace holder.

You get the idea.  All across town, and back across town, he never tired.  Oh, and there was this one.

Number 10:  Pick up holder……. “Lois Armstrong,” he said as sounds of “Hello, Dolly!” filled the van. 

“Ummmm, Aaron, that would be Louis.  Louis Armstrong.”

“Don’t talk, Mom!  I want to listen to the music,” said guess who?

This doctor visit was to the psychiatrist who oversees his autism care.  Oh, could I fill her ears full!  I refrained somewhat, but Aaron didn’t.  He stretched himself out on her small couch right away, uninvited to do so, legs hanging out over the end, and proceeded to talk about Mom’s upcoming trip to Houston……his upcoming trip to NC with Mom and Dad……his new Superman set of movies that we let him have for the NC trip……and Ultraman.  Among other things. 

Later, at the eye doctor, he was rather impatient as we waited.  Doctors and glasses adjustments are such a bother, especially with Taco Bell just around the corner!  Then in walked a nun, dressed in her full habit from head to toe.  I hoped that if I began tickling Aaron’s back, he would keep looking down and not see her.  Aaron is fascinated with nuns and with their unusual clothing, so I wasn’t sure what he would say.  Too bad we didn’t have a CD playing so maybe, just maybe, he would be quiet.  He did look up and he did see her, of course, standing right there at the front desk.  But as she walked into the bathroom, out of earshot, all he said was, “Mom, she’s wearing a hood!  She must work for the church.” 

I was pretty relieved when she was called back immediately.  I had no idea what to expect with both of them sitting in the waiting room together, and it wasn’t her I was worried about.

Aaron loved lunch, of course, even amid my reminders about not whistling as we waited for our food or making various other unusual noises.  And then before we ever stood up to leave came my reminder to him about stretching.  Aaron makes quite a production of stretching when we get up to leave a restaurant, his back arched and his stomach stuck out and his amazing stretching noise.  So I’ve learned to remind him before we even stand up that he is not supposed to stretch, which I did there in Taco Bell.  He stood up, though, and did a suppressed stretch……what you might call an abridged stretch……which on Aaron still looked amazing and drew attention, I’m sure.  I’ve learned not to look at the people sitting nearby.  He just looked a little like he was puffing up and about to implode, right there near the drink machine.  Nice.

And then he saw it……the quarter that someone had dropped on the floor directly in front of the register.  He has such hawk eyes for things on the ground, unless it’s his dirty clothes in his room or his mounds of books on the floor.  I tried to stop him but it was too late.  He bent over clumsily and picked up the quarter, while the line watched him and I just stood there.  It was quite a sight, Aaron doing the old man bend.  The employee told Aaron to keep the quarter, which he gleefully pocketed, oblivious to the scene he had just created. 

Dear Aaron!  He is so unaware of how funny and unusual he is, or of how he comes across.  These autism moments, I call them, come in many various forms.  And yesterday at his day group, they weren’t so funny.  The not so funny autism moments cause anxiety and frustration for many other reasons.  He wasn’t so happy to go to Paradigm yesterday, but he went.  He ended up in tears for part of the morning, and then in the afternoon he was almost manic in his fake laughter and his “teasing.”  He calls it teasing, even though we all remind him over and over that if he’s the only one laughing……and others are hurt or angry…….it’s not teasing.

Aaron thinks it’s funny to say things to people like, “You’re fat!  You’re dumb!  You’re old!”  Or many other things as well, most of which are not funny at all.  He truly can’t seem to permanently connect what is correct to say from what he impulsively wants…..and does…..sometimes say.  This is especially true when he is frustrated about something.  Instead of addressing the issue of his frustration, he will verbally harass others, and then often regret it later.  And he does it under the guise of “teasing.”

He has a special friend who is all bent over in a wheelchair.  He has shown so much kindness to her.  I wrote once about how he waited on her at the end of the line as they walked to Quik Trip so that he could walk with her.  He loves giving her things or helping her eat.  But yesterday on the way home from Paradigm he said, “Mom, I told S that she’s ugly.  I was just teasing!” 

I was so hurt for S and I was so disappointed in Aaron.  I told him that S is a young woman who would love to be able to get up from that wheelchair, go shopping for pretty clothes and make-up, and get her hair and nails done.  I told him that she would love to go to bed at night thinking about how Aaron had told her that her hair was pretty, or that she had a pretty smile.  Instead she would go to bed that night thinking of how Aaron had said she was ugly……and she probably feels ugly every day. 

Aaron listened.  He talked about it last night at supper with Gary.  I have to say that it was hard for me to say the words I said to Aaron.  Part of me wanted to just assure him that I was sure S knew he was teasing……that it was OK, but he should do better……or that we all understood what he really meant.  But I knew that I needed to let Aaron know of the hurt he had inflicted, while it also hurt me to say the hard words to Aaron without backing down. 

Aaron had a small seizure at 5:30 this morning, but it was enough for him to wake up later with a bad headache and with bleary eyes.  I let him stay home today.  Later in the morning, he went with me to run a few errands.  On the drive back home, out of the blue, Aaron remembered.

“Mom?” he asked.  “Can we stop at Dillon’s so that I can get S a sorry card?”

My heart was so touched, and so thankful.  Aaron does know right from wrong.  He does feel bad when he’s been hurtful, even though it’s after the fact. 

So I told him that I had some cards at home.  Right after we ate lunch, before he took a nap, I got out my card box and found him a card that he liked.  It was blank inside, but not for long.  Short and sweet, he simply wrote these words, with her name underneath.

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I hope that he has learned a lesson, one that will stick and not be forgotten during his next crazy mood swing or unhappy moment. 

The last song on the 60’s CD was another one by “Lois” Armstrong – “What a Wonderful World.”  I want Aaron’s world to be wonderful, but I want him to also understand that he can quickly ruin the wonderful world of others by his words and actions. 

Likewise, he can make it right with things like his “sorry card,” and with an attempt to watch his words and his teasing.  Our job is to instruct, to understand, to be patient, to forgive…….and to be thankful for the wonderful world we share with Aaron, even on the rough days, always hoping that the rough days will be fewer and the wonderful days more frequent.     

Now, don’t talk!  Let’s listen to the music. 

Sing it, Lois!

A Gift on Atha’s Birthday

Today is my friend Atha’s birthday.  It should be a very happy day of celebrating for Atha, her family, and for me.  Atha and I should be going out to lunch one day this week to celebrate our birthdays that are close together, paying for each other’s lunch while we laugh and while we share some heart-to-heart time.  But none of this will be happening today, or this week, or ever again.  At least not happening with Atha present.  Atha is in heaven now, and has been for nearly three months.

Is that even possible?

I wrote about my dear friend Atha after her memorial service.  Here’s the link in case you missed it and would like to know her better.  This Is My Friend  She was……she is……so worth knowing.  I can’t believe she’s not here now.

I still hear her voice clearly in my head, and her wonderful laughter.  I had lunch today with Atha’s daughter, Sarah, and I saw Atha in Sarah’s movements……the way Sarah held up her index finger as she talked……the way she opened her eyes so wide and moved her head…….her laughter.

I have so much I’d like to tell Atha.  I deeply miss our conversations, whether in person or more often, on the phone.  She was my best porch buddy, where I would sit as we chatted on the phone……my iced tea by my side……until the mosquitoes would drive me inside.

I still hear her words of advice, mixed with southern charm and sometimes a dash of sarcasm, depending on the subject.  I hear her words of comfort during the hard times, and her words mixed with the fire of resolve over injustices or wrong that either of us were enduring.

And I will always hear, and never forget, one of the most impacting things she…..or anyone……ever said to me.

“You are established in your purpose, Patty,” she said to me one day.  I wrote about that, too.   My Purpose

I will carry that with me always.

I’ve been missing her more the past few days, probably because of her birthday.  The special days are always hardest.  This past Saturday evening, for some reason, I just wanted so much to go sit out on my porch and talk to Atha.  I was so sad, and the tears came.  So I went up to my table that holds my Bible and I sat down, opening the pages, and reading here and reading there as I asked the Lord to give me a word that I needed.

I ended up in Isaiah 46.  God was speaking to Israel but principles are there for us as well.  Listen to verses 9-10:

Remember the former things long past, For I am God, and there is no other.  I am God and there is no one like Me, declaring the end from the beginning, and from ancient times things which have not been done, saying, ‘My purpose will be established, and I will accomplish all My good pleasure.’

I looked at that after reading it, and I said to myself, “Wait.  What did that just say?”

So I read it again.  Yes, there it was!  Atha’s words to me were spoken by God to me as well!!

Atha said, “You are established in your purpose.”

God said, “My purpose will be established.”

Isn’t that just awesome and amazing?!!

God has a purpose, and His purpose WILL be established.  He WILL accomplish all of His good pleasure.  He will accomplish His plan, according to His purpose that He has established……and in which He IS established.

And I wanted to say, “Well, Atha……looky there!!”…….to borrow an old childhood word.  Looky at that, would you?

Wasn’t God SO extra good and loving to show me those verses when I was so sad?

So I thanked God for reminding me of Who He is, and that He has a purpose even for the pain.  I don’t understand it……I may not even at this point really like it…..but His purpose will be established.   It will be accomplished, whether I see it or understand it this side of heaven or not.

Verses like this become memorial stones to me, so beside that verse I wrote, “Remembering Atha, June 2016.”

Atha would absolutely love this.  I wonder if God told her how He leaned down and spoke to me on Saturday evening, using her words that are His words.

It was just all wrapped up together like a beautiful package, perfect for this birthday week.

Happy Birthday, Atha.  I miss you, I love you, and I am so happy that you are…..and always will be…..my friend, Atha.

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Do You Wanna?

I hear it all day long.  I’m not exaggerating.  Honest.  At least all the part of the days that Aaron is home I hear it over and over.

He walks into the kitchen or wherever I am in the morning.  Most days he begins his first of many words during the day with these words.  Or if they are not the first words out of his mouth, they will be close to first.

“Mom, do you wanna…….?”

And then he often stops.  He just stands there, thinking of how to fill in the blank after “wanna.”  I used to ask what it was that he wanted, but I’ve learned to just wait.  And many times, really, he doesn’t even complete the sentence.  Sometimes it’s because this question is just a habit with Aaron.  Sometimes he just asks it in order to get my attention.  He asks without even a plan in mind as to how to finish the sentence.  Other times, he does have a motive.

“Mom, do you wanna play Skip-Bo tonight?”

“Mom, do you wanna watch The Incredible Hulk tonight?”

“Mom, do you wanna take Jackson on a walk?”

“Mom, do you wanna take me to Dillon’s?”

“Mom, do you wanna give me extra money?”

I could continue for a long time filling in the blanks to “Mom, do you wanna……?”  Just like Aaron does.

But really, a majority of the time Aaron never finishes his question.  It’s like the unfinished conversation cloud hanging over his head in a comic strip, waiting to be completed but never is.

All parents know that repetitive questions from young children can be tiring.  So it is with me and the “Mom, do you wanna……?”  But it’s not just that it’s tiring to hear it all the time.

I’ll admit that I sometimes get weary of being the usual object of his question.  I know however he fills in the blank….the long pause….it will somehow involve me.  I can no more than pull my chair up to my computer after a tiring day and I soon hear Aaron’s loud thumping down the stairs from his room.  Thump, thump, thump down the first flight of stairs.  Is he going to stop in the kitchen for a snack and go back to his room?

Nope!  Thump, thump, thump down the second flight of stairs……where he then stands behind me and stares at my computer screen, maybe loudly chewing gum.  And I wait, usually not very long.

“Mom, do you wanna…….?”

So honestly, at that point, I feel a little put upon.  No, Aaron, I do not wanna…….

I might be tired physically at the end of the day.  But there are many times that I’m tired in spirit.  Like I said, tired of being the one that Aaron comes to as he fills in the blank after “do you wanna……”

It’s a normal parent emotion, that conflict between loving your child totally yet needing some space.  But when your child is a grown man and he has special needs, the emotions of spirit tiredness can cause great guilt.  I have nice breaks from the responsibility of Aaron while he’s at his day group.  I’m very thankful for that.  Yet there are times at home that Gary and I both feel the weight of being caregiver and companion to our Aaron.

My friend, Wendy, recently wrote about this on her Care Page that she has for their son, Elijah.  Elijah, who prefers to be known as Mr. Speedy, has significant special needs.  We’ve been friends with their family for a long time.  Dan, Wendy, Jeremiah, and Elijah even came to the NHRA race at Topeka to see us and Andrew.

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So read what Wendy said:

As I read my text back to myself, ” E and Me…” I think how I often I write those words. I smirk to myself with a light heart; yet heavy sigh and realize this is my life, my calling, my journey. As the rest of the kids move on and become more independent, E and me are the constant. You can be sure you never have to wonder where E is for where you find (mom) me, you find E.

 How could I ever feel lonely? I have Jesus and my super hero, Speedy, making every day a story to reread. Something about the days with my Super Speedy give me a reason to giggle and reflect on how wonderful life is with my special E. His world is heavenly; childlike and simple; the way the Lord wants mine to be.

Wendy’s sweet, powerful words did me good.  Really good.  Often, seeing life through another’s similar eyes is just what I need in order to see my life more clearly.  As Wendy said, sometimes our lives are very childlike and simple, kept that way by the lives of our boys.  I may at times sigh and wish it wasn’t so, but it is.  And there is joy in that simplicity, even on the hard days.

Maybe I need to fill in the blanks to Aaron’s constant question more often. “Mom, do you wanna…….?”

Aaron, I wanna see you healthy and safe.

Aaron, I wanna see you enjoy life.

Aaron, I wanna see you as happy as you are when you find your favorite “croysants,” as you call them.

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Or as happy as you are when you always, always stand in the back corner of the elevator at the doctor’s office……so you can feel the movement better.

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Aaron, I wanna capture your ability to experience life’s simple joys with great delight, just as much as if you were looking at the Eifel Tower or the Taj Mahal.  A lady bug, a dandelion, a frog, a song……they still tickle you to pieces.  That’s a gift!

Aaron, I wanna continue to be your favorite Skip-Bo partner……even when you cheat, and you laugh when I say, “Cheater, cheater – Pumpkin eater!!”

Aaron, I wanna count my blessings with you instead of numbering some things as burdens.

And when I feel burdened, I wanna take it to my Heavenly Father before I unload on you.

I wanna count it all joy, and know that when I don’t, God understands and He has new mercies every morning…..new yet unchanging.

Just like something else that’s unchanging.

“Mom, do you wanna…….?

 

A Fun Day at Tanganyika

I’m a little late to blog about our fun day at Tanganyika Wildlife Park.  This jewel is just a mile up the road from our house!   Gary and I took Aaron there on Memorial Day.

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We love it because it’s beautiful……and it’s not too big, so Aaron doesn’t get all tired out……and you have access to so many of the animals.  You can walk among them, feed them, ride some of them, and have some sit on your lap.  We didn’t ride the camel this year or have any animals on our lap, but we have done that in the past.  Anyway, it was a very nice day, so I wanted to share it with you in pictures.

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Come back and see us again!!

Only If It’s Friday!

He Said What?!

I just have to quickly share with you a perfect autism moment with Aaron that I had yesterday.  One of the characteristics of autism that Aaron sometimes displays is that he doesn’t always understand jokes or irony.  We had the funniest display of this yesterday that I’ve seen in a long time. 

He stayed home yesterday because we had an appointment with his state insurance representative.  I decided to make a quick trip to Dillon’s, and of course Aaron went with me.  I told him that he could have his favorite Cheddar Pasta Salad for lunch, so he was very happy as we walked into the store.  Aaron always gets a large container, by the way.  That’s important to remember.  Oh, and it’s also important to remember that yesterday was Friday.

We waited for awhile at the deli counter before an employee…

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Lessons From the Loaded Truck

Casting all our cares upon Him, because He cares for us!

He Said What?!

Gary and I appreciate how our neighborhood association has a designated clean-up weekend twice a year. The association rents a huge dumpster and puts it in a field that’s just around our circle from us. It’s the perfect time for us to unload any large unwanted items that are allowed in the dumpster. Our big goal, though, is to cut and trim many of our branches, bushes, and trees that have gotten out-of-hand or have died. This last clean-up time a couple weekends ago was no exception. The weather was perfect in every way for Gary and I to head outside and begin our chopping and sawing. It wasn’t long before the piles were growing all over our couple acres. It was time for the dying cherry tree to go, as well as an old long-dead spruce. Our huge Crepe Myrtles needed to be cut down low, and the violet…

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All I Need to Know

He threw the glass across the kitchen this morning.  At least it was a plastic glass……and at least it was empty.  So began our morning.  Aaron got up just in time to go out to Gary’s truck in the driveway and hug him goodbye.  He was happy and I was hopeful.  Yesterday was up and down with Aaron.  He didn’t like me for awhile but then settled down and we had a nice evening.  We watched Wheel of Fortune, and played Skip-Bo later while eating strawberries.

Simple pleasures, but not always such a simple life with Aaron. 

This morning as we walked back into the house after his goodbye hug for dad, he decided that Mom was the bad guy again.  He told me he wasn’t going to go to Paradigm today, and on and on. 

Oh, the complexities of his mind!  The challenges of autism!  Physical issues I can handle so much easier because the flesh and blood of those special needs is right there to see and somehow grasp.  But the workings of the autistic mind are sometimes anyone’s guess, and this morning I was in no guessing mood.

So I launched back after his verbal barrage got to a certain point.  I pointed my finger at Aaron and I very firmly put him in his place.  But Aaron rarely stays in the place I put him.  I may feel better for a few seconds, but then he opens his mouth and his resolve is more set than ever……his resolve to win the war, even if he loses a few battles in the process.  I know this about Aaron, but I sometimes act despite what I know.  I act on my feelings, and I often regret it. 

The rest of the morning was filled with Aaron telling me he wasn’t going to talk to me anymore, all the while talking to me to tell me that he wasn’t going to talk to me.  Over and over and over.  He also didn’t want me to talk, so I mostly remained silent, which actually drives him crazy.  There was no winning for either of us at that point.

Aaron went to Paradigm, wanting me to come in with him so I could tell Barb to be sure he was nice……and Barb told him the same thing I had said earlier, that he was the only one who could be sure he was nice.  I don’t know for sure how his day has been.  I don’t know for sure that I want to know.

We’ve had lots of storms in Kansas lately.  On our way back from Topeka recently, Gary and I drove through the beautiful Flint Hills.  There on the horizon were storm clouds, and we were headed straight into them.  There was no avoiding the storm.  No matter what road we took, the drive home led into the storm. 

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And again yesterday, driving Aaron to his day group, we were facing storm clouds.  There they were, dark and threatening. 

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Driving into a storm reminds me of living with Aaron.  It also reminds me of Moses.  I’m reading the book of Exodus, and in chapter 3 God spoke to Moses in the burning bush.  He told Moses of the job He wanted him to do…..to lead the children of Israel out of Egypt.  And Moses said, “Who am I, that I should go to Pharaoh and bring the children of Israel out of Egypt?” 

The first part of God’s answer was simply this: “But I will be with you…..”

God didn’t say, “Oh come on Moses, you’re the man!  You’re so great!  I know you can do it!”

Moses’ sufficiency rested only in those six words that God first spoke: “But I will be with you…..”

Moses’ sufficiency rested only in God.  Not in himself…..not in his family…..not in his royal connections from years past.  No.  The strength and wisdom and courage that Moses needed rested only in God.

I’m not proud of the times I blow it with Aaron.  I’m not proud of Aaron’s behaviors on the bad days.  I often feel like Moses.

“Who am I, that I can parent Aaron?  Who am I, that I can have patience enough on the bad days to tolerate the behaviors?”

And God’s answer for me is just the answer He gave to Moses: “But I will be with you…..”

It’s no mistake that I am Aaron’s mother.  God put me on this road because of His sovereign plan for me and also for Aaron.  I may feel on some days that I can’t do this correctly, or do it at all, but this is where God has put me.  God doesn’t make mistakes.

So here I am, driving on this life road and headed into yet another storm.  I know I’m not alone in this.  I know of others who are feeling the pressure of the dark clouds on their horizons, and are soon overcome with rain and lightning and thunder.  But if you’re God’s child, He is with you.  He promises you strength, wisdom for the asking, peace in your inner being, and joy deep down.  Whatever your situation…..your worry……your pain…..your secret turmoil……your fear…..your failures, God’s word to Moses is God’s word for you…..for me…. “But I will be with you….”

I don’t always feel this fact.  But I know this fact to be true, this fact of God being with me, and so I can rest in that knowledge even when I don’t feel it.

After I dropped Aaron off and drove home yesterday, this was my view.  All the time I was driving into the storm, just behind me was the lifting of the clouds. 

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It’s true of my life, too.  God will relieve the burden, even if the situation remains.  He relieves my burden by reminding me of Who He is, like He did to Moses.  And reminding me that He is with me, always. 

Even when I say, “Are you sure, God?  Did I take a wrong turn somewhere?  And look how I’ve messed up!!”  And He answers once again, “But I will be with you…..”

Dark clouds, or bright sky.  Angry Aaron, or happy Aaron.  God is with me.

On some days, that’s all I know.  But on every day, that’s all I need to know.