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.
Iβm sure that all of you reading this know who Shecaniah isβ¦or was, I should say. Right?
If you donβt know him, itβs because he is what Dale Davis in his book on Ezra calls a βminor character.β
Ezra and the people of Israel had been allowed to return to Jerusalem after the Babylonian exile. They were rebuilding the temple and the cityβs walls. But as usual, Godβs people chose to sin by intermarrying with the heathen nations around them.
Ezra was distraught as he confessed the nationβs sins to God. A large assembly of people had gathered when out of the crowd, Shecaniah stepped forward to encourage Ezra in the actions that needed to take place. He said there was hope for Israel despite their sin.
βArise!β Shecaniah said to Ezra. βFor this matter is your responsibility, but we will be with you. Be courageous and act.β
Ezra arose and acted, surely energized by Shecaniahβs timely shared wisdom.
All through scripture and history, God has used those βminor charactersβ to lift His discouraged servants and to accomplish His great plans.
I remember my grandma. She lived with us for 14 years. How often I would walk by her bedroom and see her sitting in front of her open Bible. Her head, covered in beautiful white hair, was bowed as she prayed for every single member of her large family.
She was what some would call a βminor character.β But her impact in our lives for Christ is major, I am sure.
Do you wonder what purpose you can serve for Christ?
It doesnβt matter who or where you are. We are never sidelined in our ability to pray, to send a card, to speak encouraging words to those around us who are struggling, to make a meal…
The possibilities are endless for us βminor characters.β
Letβs be minor characters making major differences in ways that matter most to Godβ¦not to be seen, but to be used by God for eternity.
Time waits on no man, Chaucer said. Time waits on no child, either. We see this clearly as we watch Ryker growing. Pictures from a few months ago compared to now show his physical growth. New words and speaking in sentences show his intellectual growth.
It brings joy mixed with a dose of sadness as all parents and grandparents know very well.
Ryker and Aaronβs relationship is also growing with time. We have seen great strides on Aaronβs part in his friendship with his little nephew.
Sometimes Aaron sees Ryker as his buddy.
Aaron still loves giving Ryker snacks.
Screenshot
He didnβt even mind Ryker taking his favorite chair one day.
They play funny make-believe games.
Wear goofy hats of Aaronβs.
Watch cars zoom down the track.
Do chalk drawings.
Laugh at silly cartoons.
Thoroughly enjoy water balloons.
Blow dandelions.
Play music.
Occasionally share the playset.
Fly a plane.
And one of the best is when they watched our fireworks on the Fourth.
Itβs just the cutest thing to see Aaron look at Ryker and say, βRyker! Come on!β Then to see Ryker bolt as fast as he can on his little legs to run with Aaron up the stairs to Aaronβs room where all sorts of fun and unique gadgets await his exploration.
And snacks that are new to Ryker! Dots! Red Hots! Pistachios!
And gum!
So, you can see that we must monitor things closely, sometimes much to Aaron and Rykerβs frustration.
But for all the positive steps forward, Aaron still carries the burden of his autistic way of processing his world and how others impact it.
Aaron sends mixed signals to Ryker. One minute he might be happily allowing Ryker to play with one of his cool toys and the next he might yell no to Ryker for touching another treasured item.
Aaron can be hurtful with his words during those times, and inappropriate.
Therefore, we must also monitor those moments as we try to foresee certain triggers that might upset Aaron. Weβre just never totally in the clear and probably never will be.
Yet, again, the progress Aaron has made truly gives us much for which to thank the Lord.
The challenges cause us to seek Godβs patience and wisdom as well.
Speaking of prayer, this has been one of the sweetest and funniest areas of Uncie Aaron and Rykerβs relationship.
Aaron has never forgotten a silly prayer that he heard in an old Don Knottβs movie when he was a child. He sometimes yells it out when we get ready to ask the blessing before eating.
βRub-a-dub-dub!! Thanks for the grub!!β
No amount of correction on our part has kept Aaron from blurting that out sometimes. So, you guessed it. One day as we all sat at the table and joined hands, Aaron gleefully yelled, βRub-a-dub-dub!β
And Ryker, without missing a beat, chirped βRub-a-dub-dub!!β
Letβs close our eyes to pray nowβ¦and let the adults grin real big!
Every night as part of Aaronβs bedtime routine, we join hands and pray. Ryker has joined us before. One night I asked Ryker if he wanted to pray with us, so he scurried up on the bed, took our hands, and immediately launched into his own prayer. We didnβt understand much of what he said, but it was precious in Godβs eyes, I know, and certainly in ours.
Andrea shared with us Rykerβs prayer one night at their house. I had come over to help with the baby. Laying in his bed before he went to sleep, Ryker prayed:
βDear Jesus, dank you Gramoo. Dank you Uncie Aaron. Dank you donuts.β
Out of the mouths of babes.
Dear Jesus, dank you Uncie Aaron. Even in the frustrationsβ¦the continual training that sometimes never seems to take holdβ¦the correctionsβ¦the monitoringβ¦
May we see the joy he also bringsβ¦the laughterβ¦the delight at the simplest things that we often overlook.
And the huge progress heβs made in his role as Uncie Aaron.
A couple months ago, Aaron found a CD in our van that he had not listened to before. I saw that it was an instrumental CD produced by Chelley Graves. Chelley is an accomplished violinist who taught our daughter violin for quite a few years.
Now, Aaron only likes to listen to music that has people singing. Instrumental music is not his interest. He will even skip songs on his CD’s that have no singing, which is very telling since Aaron goes from #1 to the last song without ever skipping a song because one does NOT skip numbers.
He popped the CD in and sat back to listen as he examined the CD case. It didn’t take long for understanding to sink in.
Aaron: Mom, doesn’t Chelley sing?! (He pronounced her name with the hard CH sound, as in check)
Me: No, Chelley (soft CH) is a violinist. She doesn’t sing on this CD.
I figured that was the end of listening to this CD. But no, Aaron kept listening to song #1, #2, #3, #4. Since you’re not Aaron, I don’t need to keep counting but you get the picture.
I was very pleasantly surprised!
The next morning, as we left the house for his day group, Aaron pushed the rewind button, and we went from #8 all the way down to #1. He wanted to listen to the whole CD again!!
This was AMAZING for Aaron on so many levels!!!!!
This was AMAZING for me on so many levels!!!!
No more wobbly voiced Elvis, either!!!!
Chelleyβs beautiful music was filling our van and making us both very happy!
Aaron was intrigued with the fact that I know Chelley. One day he told me that he wanted to send her a card to tell her that he liked her music. I messaged Chelley for her address and Aaron wrote her these precious words.
And then a few days later, Chelley messaged Aaron. I printed her message and handed it to Aaron.
I wondered how his face could hold his enormous smile.
Aaron placed Chelleyβs message on his bed with his collection of special items that he carefully arranges on his bed every night, surrounding him while he reads and listens to music before he goes to sleep. Her letter is also on Aaronβs desk every day, a testament to how special it is for him to be acknowledged.
Chelley has recently been playing her violin at an Italian restaurant in our city one or two nights a week. So, last night Gary and I took Aaron to this restaurant as a special treat, but also for a very fun surprise.
Chelley knew we were coming. As we sat in our booth, she came to our table and spoke to Aaron. He was puzzled at first but when I told him who she was, there was that huge smile again. He told her that he liked her music, and of course then he had to show her his sticker book that he had brought with him. Chelley was so gracious and kind.
All during our dinner, he would look over at her as he listened to her play so beautifully, and his happiness was once again on his face and in his eyes.Β
Β
Kindness shown to Aaron means the world to us. So does the opportunity for Aaron to show kindness to others as he did to Chelley when he wrote her that note.
We came full circle in a sense, all of us sharing in the joy that Aaron brings in his own unique and uninhibited way.
And hereβs hoping for less Elvis and more Chelley!
I was sitting at my desk the other morning when in rushed Aaron.
βHere, Mom!β
And with that, he reached over to place a handful of M&Mβs in a little pile on my desk.Β Β Some stuck to his hand, so he wiggled his fingers to dislodge them as I wincedβ¦which of course he didnβt notice.
βEat them!β he commanded as he stood there waiting for me to obey.
I never know where Aaronβs hands have been. All I could see in that colorful pile was bacteria of all sorts. And Iβm supposed to put those in my mouth?!
This happens routinely in our homeβ¦Aaron sharing his food treasures with us. And routinely I pray for Godβs protection as I put a fake smile on my face and gingerly place the bacteria-laden morsel in my mouth.
Aaron would not take no for an answer, so in went an M&M. And Aaron laughed happily as he stood there rubbing those suspicious hands together, totally full of joy as he watched my reaction and then tromped out of the room, mission accomplished.
Thank you, Lord, for this strong immune system that you have given me.
Our day soon began with a visit to his Epileptologist, where Aaron always makes himself quite at home on the exam table and makes the doctor very nervous that he will fall off the table.Β
Afterwards, we joined Aaronβs case manager at Carlos OβKellyβs for his annual Person-Centered Support Plan meeting. Aaron only loves chomping down on chips and salsa, enchiladas, and of course his ββ¦side salad with NO croutons and TWO ranches!!β All the talk of his support plan, likes and dislikes, behaviors, goals, and plans are of exactly zero interest to Aaron.
As we left the restaurant, I asked Aaron if he needed to use the bathroom. He said no. So, we zipped into the Dollar Tree nearby for a few itemsβ¦where Aaron did have a bathroom crisisβ¦and Iβll leave it there.
Sigh.
We got home in one piece but frayed and frustrated with the situation and with each other. I wish I could tell you how to handle it all like I did, with grace and supreme patience and amazing kindness.
But I do know that lying is a sin.
Another sigh.
Later, I walked to my desk and saw that little pile of colorful M&Mβs. I sat down and ate a few.
And I remembered this verse:
βConsider it all joy, my brethren, when you encounter various trials.β (James 1:2)
Guess what that word βvariousβ means?
Multi-colored.
In just the span of a few hours, Aaron shared himself in several varied waysβ¦multi-colored, you could say. Some funβ¦some pleasantβ¦some stressful.
I donβt mean to suggest that living with Aaron is a trial, but sometimes it is. Any parent/caregiver knows that the days can be long and full of many emotions.
I call it the highs and the lows.
That word βconsiderβ means to make a mental judgment. So I must, at some point, corral my thoughts and mentally choose to see the trials as having purpose in my life.
And to choose joy, as this verse says and as I have written about even recently.
βOur Sovereign oversees the trial itself and oversees us IN the trial, so it strengthens and deepens our faith.β (Daniel Doriani)
I stared down at that little stack of M&Mβs after the challenges of this one day. And I ate some of themβ¦praying again. ο
I partake of what Aaron gives to me, in all the colors involved.
Itβs up to me to choose how I respond, especially in my long-term endurance of daily life with Aaron.
Two days after our full day of ups and downs, Aaron and I stood in the home of a dear Meals on Wheels client. Aaron began digging into his shorts pocket. Soon he pulled out an M&M.
ONE lone M&M.
βHere!β he excitedly said to Edna. βI brought you this!β
And he laid the one little M&M on the table beside her chair. Just one.
She laughed with delight and thanked him profusely while he grinned from ear to ear, rubbing those hands of his together in pure joy.
Then yesterday, while Gary sat beside my desk and we talked, he looked down at the floor.
βWhatβs that?β he asked as he pointed to the floor.
There, beside a chair, was one little green M&M. It had probably fallen off Aaronβs sticky hand.
Evidence that Aaron had been there, leaving me with his heartfelt gift.
The evidence of Aaronβs place and impact in our lives is scattered here and there over every page all through these years.
One little piece, placed here and put there.
Multi-colored.
Designed by God.
Producing a beautiful picture of joy and grace if I but choose to see it in that light.Β Β
Aaron and I have a client on our Meals on Wheels route named Edna. She is such a delight every single week. And she takes great delight in Aaron, evidenced in her wide-eyed attention to every word he says.
Last week, Edna had a special gift for Aaron. She leaned down to pick up a small and very pretty pillow.
βHere, Aaron,β she said, βI have something for you.β
She held the pillow for him to see. Then she proceeded to point to each letter.
βThis is an L,β she said as she showed him the first letter.
βThis in the middle is an O,β she said, βand next is a V, and right here is an E.β
She stopped and smiled broadly at Aaron.
βIt spells LOVE,β she finished.
She let me snap their picture, giving me permission to share it.
Now, I donβt know about you, but right away I knew that the word on this pillow was not the word LOVE but was instead the word HOME.
Iβm not sure if Edna really thought the word was LOVE or not.
I suspect, though, that Edna didnβt know Aaron can read. I think she wanted him to believe that the word was LOVE because she wanted to show Aaron that she loves him, which is so precious.
I just held my breath, though, hoping that Aaron would not correct her.
I ran to the van to grab my phone and take some pictures. I came back into the house to find Aaron talking to Ms. Edna about the planet Mercury.
I figured he had not corrected her spelling error since he was more interested in having a captiveβ¦though hard of hearingβ¦audience who would smile and nod at all the planet Mercury data and details.
I breathed a huge sigh of relief as we drove away.
βEdna is real nice who lives on ______ Street,β Aaron commented.
I smiled at his phrasing and attention to detail, being sure to include her street name.
And I smiled because he had not corrected Ms. Edna, allowing her to have her joy.
But later, as we returned to the van after another delivery, I held the pillow up.
βHey, Aaron,β I asked, βwhat word do you see on this pillow?β
βHome!β he exclaimed without missing a beat. π π
As soon as we got HOME with the LOVE pillow, Aaron showed it to Gary. Then I asked him if he wanted me to put it in his favorite family room chair. Aaron was happy with that idea.
So, there it sits now, every dayβ¦reminding me each time I see it that really, HOME is LOVE.
“For You formed my inward parts; You wove me in my mother’s womb. I will give thanks to You, for I am fearfully and wonderfully made; wonderful are Your works, and my soul knows it very well.” (Psalm 139:13-14)
Aaron and I were eating lunch out when I received this sonogram picture from our daughter, Andrea. I showed it to Aaron right away, a huge smile on my face. He stared at it for a few seconds.
βWhat is it?β he finally asked.
βThis is your niece or nephew,β I told him.
Aaron stared at the picture again.
βItβs too small!β he said.
I just smiled, still in awe over this amazing view of the miracle taking place in Andreaβs womb. I have, like you, seen hundreds of these sonogram shots but this one took my breath away. Isnβt it just amazing that when the baby is yours, as in this is MY grandchild, then the picture takes on a whole new depth and meaning?
It’s another miracle of God, this love that He puts in our hearts for our own flesh and blood.
There in the restaurant as we crunched on chips and salsa, I pointed out to Aaron the babyβs head and torso and the beginnings of his little body.
Several days later in the grocery store, Aaron and I saw a friend. Aaron quickly launched right into what was still fresh on his mind.
βI saw the stomach picture of my sister and I didnβt know what it was!β he excitedly said.
I saw the look of confusion on our friendβs face, so I quickly explained about the stomach picture!
Aaron rarely gets family relationships correct. Not too long ago, before we knew that Andrea was pregnant, he had an observation.
“I wish Andrea was pregnant. Then we could all be Granddads.” π
But now Aaron knows a few things. For awhile this is what he would say to anyone who was fortunate enough to be near him or to anyone that I stopped to chat with.
βMy sister is having a baby and Iβm the UNCLEand we don’t know if it’s a boy or a girl because it’s too little!!”
But nowβ¦NOWβ¦we know that Andrea and Kyle are having a baby BOY!!
Aaronβs rote phrase has changed.
βMy sister is having a baby and Iβm the UNCLE and itβs a boy and heβs the NEPHEW!!β
Then Aaron often adds that he is scared to be The Uncle and that heβs not sure he wants a baby boy. We assure him that all he needs to do as The Uncle is to play with and love his nephew.
Time to insert the first Baby Bump picture! Andrea asked Kyle if she looked pregnant or if she looked like she had just eaten too many donuts. π
Aaron has obsessed about changing the babyβs diaper. The nurse at his day group actually brought a baby doll in and taught Aaron how to change a diaper. Aaron tells us all that he passed the diaper test! Now we tease him about being the main diaper changer, so maybe this is why heβs scared to be The Uncle. π
But really, we have all been very surprised and touched by how excited Aaron is about this new baby business. A recent example happened just a few days ago. The background is that Andrea has been very sick with this pregnancy, having a hard time finding food that will stay down. One weekend she felt like biscuits would taste good. She and Kyle bought a can and of the eight biscuits, she ate seven!
Kyle didnβt waste any time in buying more biscuitsβ¦many more biscuits! He stacked them on their counter, and we laughed and laughed when we got this picture.
As Aaron and I were picking up a few groceries the other day, he suddenly started briskly walking toward the biscuits in the cooler.
βMom!!β he declared, βI want to buy some biscuits to send to Andrea!β
It was the sweetest thing for him to want to do that. I explained that we canβt mail biscuits but that we would buy her some on our next visit.
Aaron continually infuses our lives with his own very special way of life and his own unique view of our world.
We often stand beside him either smiling or laughing or explaining to others or doing damage control from the things he says.
But all this wonderful baby business and Aaronβs way of dealing with such a huge life change for us has, as always, offered another view into the complex and compelling world as Aaron sees it.
We got the BEST news on Sunday night. I had been talking to our daughter, Andrea, for over two hours. We were winding things down when she asked if I would go get Garyβ¦that she and Kyle had something to show him on Facetimeβ¦and I just assumed it was something they wanted him to see about the big door installation they had worked on when we were there last month.
We were soon chatting when Andrea said they had a picture to show us, which she then texted to me and Gary. Here is the totally adorable picture she sent:
And oh my goodness, the surprise was real! I whooped and hollered, and we laughed and I cried and it was so wonderful!! Our first grandchild!!
We got our son, Andrew, on Facetime and his reaction was equally fun.
We wondered about when to tell Aaron. For the longest time he has asked Andrea when she is going to have a baby. I have told him not to ask that question because itβs personal, but none of that matters to Aaron one bit. He has continued to ask anyway, and she always handles it with humor and patience.
Soon we heard him coming loudly down the stairs. He was surprised to see everyone on the phone screen. I knew this would be the time to tell him.
βAaron,β I said, βguess what? Andrea is going to have a baby!β
He grinned a huge grin. Then he bent over at his waist and rubbed his hands quickly together while he laughed and laughed. He was thrilled! His reaction tickled us all to pieces.
βYouβre going to be Uncle Aaron!!β we told him.
He laughed again as he absorbed that news.
βAndrea!!β he exclaimed, βdoes that mean youβre going to be fat?β
Andrea was her gracious self while I reminded Aaron for the umpteenth time that you do NOT say a pregnant woman is fatβ¦that she is pregnant, not fat.
Can you tell this isnβt the first time he has made that comment?
Yesterday, Aaron and I were at our neighborβs house. Suddenly Aaron leaned in to say something to Amanda while he softly rubbed his hands together.
βMy sister has a baby in her stomach,β he slowly began, as if in awe. βAnd the baby is too little to tell if itβs a boy or a girl.β
He spoke softly, not with the exuberance of the night before. It was as if he was sharing the most amazing factβ¦which it really is.
It was so precious and sweet. Amandaβs face was beaming, as was mine, and Aaron knew that he had shared something very special as he saw our reactions.
And we knew, as we saw his look of wonder and heard the same in his soft voice, that Aaron was getting it.
βAaron,β Amanda said, βyouβre going to be an uncle!β
βIβll be an uncle!!β he repeated.
Uncle Aaron!
I like the ring of itβ¦and I think Aaron does, too.
Two weeks ago today we were travelling down to Texas to see our kids. Our βkidβ Aaron went with us, somewhat compliantly until the morning we left. The reality of actually leaving the house and his room and all his things was too much for him to handle gracefully.
All during the packing process I encouraged him to downsize what he took. For instance, I told him to take the one Handy Answer book he was readingβ¦not five. He wonβt read five books in the next three years. Thatβs because he will ONLY read at night before bed, a few pages, and nothing so far has ever changed that reality for him. He agreed to this deal, but as I was putting something in one of his bags, I uncovered two extra Handy Answer books that he had hidden from me under some clothes. I removed them, saying nothing. He put them back, saying nothing. HaHa! We finally agreed on taking one extra book, which of course was never opened.
We also let him use his money to buy a Nintendo game he had wanted. He bought it two days before we left, but the game was in our possession until he walked into Kyle and Andreaβs house in Texas. Call it bribery if you want, but we call it another of our clever survival tips for traveling with an autistic child. Survival for us even more than Aaron.
Other than dragging Aaron kicking and screaming out of the house on the morning we leftβ¦not literally, but almostβ¦he did great on this trip. Iβll start my photo dump now.
Happy Aaron blowing his straw wrapper on me at Quik Trip.
Spending Easter morning at church with Kyle and Andrea. A huge blessing!
Then giving Aaron the basket that Andrea made for him. Sweet sister!
He helped Kyle gather sticks before their new fence was installed the next day. Kyle is great about getting Aaron involved with activities.
He fed the dogs every chance he got!
Our big outing was to NASA. He was having a slow day physically and mentally, but he loves telling everyone about that day.
Our son, Andrew, was in town for an NHRA race. He got to come over for dinner one night. What a joy to have us all together, even briefly.
Gary, Andrea, and I went to the race on Saturday while Kyle stayed home with Aaron.
And on Sunday, their Monster Energy team won!! Sadly, we were unable to be there that day. βΉ
I love the love that Andrea, Kyle, and Andrew show to Aaron.Β I wish I had a picture of Kyle trying to teach Aaron to do push-ups while we were at the track. Or one of him the night we arrived giving Aaron the special game he bought him.Β π
The week was packed with much more, but Iβll end this now with a funny story:
Background: For years my family has had fun with my association with cows, as in cow Patty. I also go by Moo as much as Mom. π
On our way to Houston, we stopped at our favorite tourist center/rest stop in Oklahoma City. Aaron was ecstatic that Gary told him he could buy me a little stuffed cow.
Aaron decided to explain his purchase to the clerk at the cash register.
Loudly.
βIβm buying this for my mom because sheβs a COW!!β
He Said What?! 