Family – Page 8 – He Said What?!

AARON’S Mother’s Day

The above title is not a mistake. You see, every special day for Aaron has one bottom line. That bottom line, simply put, is food. Aaron knows that special days usually call for special food. To Aaron, special food is what makes the world go round. Forget all that love stuff. It’s FOOD, baby!!

This memory from 10 years ago popped up on my Facebook news feed recently:

Aaron: “So are you getting something special since it’s your Mother’s Day?” I walked over to him, put my arm around him and said, “Well, a hug is special.” Aaron: “I was talking about food!!” Ah, if Mom gets special food then Aaron might get special food. Smart boy!

This past Saturday, while I was planting my porch flowers in various pots, Gary took Aaron out to buy me a Mother’s Day card and flowers. Aaron walked up on the front porch when they got home and awkwardly thrust the flowers out for me to take. He immediately turned to walk away, hoping to avoid the hug that he knew was coming. But before he got very far, he turned and said these priceless words: “Mom, now that I got you flowers, can we get something special to eat?!”

HaHaHaHaHa!!!!

He enjoyed watching me put the flowers in a vase.

He was happy when I finished the porch flowers.

He was VERY happy when he hopped in the truck with me and Gary as we went to Lowe’s. A shopping trip might…just might…mean a stop for special food.

So he was beyond happy when he heard the words “Burger King” come out of our mouths. Yay!! Later, as we sat around our table and ate our simple but special food, Aaron was enjoying every bite.

Mission accomplished!!

The next day, Aaron ran into the bathroom as I finished drying my hair. He told me to hurry because he had something for me. I didn’t hurry fast enough, however, and Aaron couldn’t contain his excitement.

“Mom!! I got you a card!! Hurry!!”

No matter how many times I tell him not to divulge the secret, Aaron cannot keep secrets very well when it comes to the gifts he gives.

With unfixed hair, we ran downstairs to where Gary sat. Aaron grabbed the card from Gary’s hand and happily handed it to me.

I opened it, and my laughter delighted Aaron no end!

Later that evening, we feasted on great food – grilled ribs and yummy sides.

And I was once again reminded that, despite the issues we sometimes face with Aaron, he provides us with many special moments.

Happy Mother’s Day to me, from Aaron!

Every day, if I take the time to look.

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms. While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided. A big reason I think this is because I know me. I know me better than anyone else knows me, except God. I know that I’m no more special than any other mom out there. This isn’t fake humility, either. It’s just the truth.

All moms need God’s grace for each day. We who are His children need His grace for our own children in so many different ways. How amazing is God’s grace, too! He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning. He has all that I need. He has all that any mom needs. I asked God many times to give me grace for the challenges that I faced as a mom of all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs. My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

Aaron-mothers day 12May1985

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
Who dread with a passion those IEP meetings.
Who dread having to once again explain your child in every new setting.
Who dread high school graduation because……then what?
Who try to ignore the stares from others in public places instead of basking in admiring glances.
Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
Who are searching for the best wheelchair rather than the best bicycle.
Who watch their child being marked for radiation rather than getting a cool tattoo.
Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
Who hurt because their child doesn’t have many, or any, friends.
Who are signing guardianship papers instead of college admittance papers.
Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
Who know more drug names and side effects than they ever wanted to know.
Who spend far more time finding caregivers than finding cool vacation spots.
Who are adept at rearranging schedules due to unexpected medical issues.
Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
Who read your adult child the same book every single night of his life.
Who keep waterproof mattress pads on your child’s bed – your adult child.
Who have a hard time finishing a conversation with your husband without being interrupted over and over.
And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

So to all of you amazing mothers of special needs children, I give you a huge high five!! I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

23456371_10154728426231895_7304768848480843521_o

Keeps Me Singing

My mother passed into heaven five years ago today. I wanted to re-post this blog I wrote at that time about the sweet gift that God gave us shortly before she died.

It was probably over 55 years ago that a soloist with a beautiful voice went to sing in a revival service in the little town of Oakvale, West Virginia. She sang the hymn “I’d Rather Have Jesus,” and then she sat down to listen to the sermon preached by Jimmie Jones. Her heart was disturbed as she listened to the gospel being preached that night. She thought of the song she had just sung, and of the words that came out of her mouth in such a perfect performance…..words that she knew she didn’t really mean. For it was just that – a performance. She sang beautifully, but she sang a lie. She knew that she didn’t really know Jesus, and that she didn’t really mean it when she sang about wanting Jesus more than anything this world affords.

This woman was my mother, and that night changed her life and the life of our family. She went home and urged my dad to go with her to listen to Jimmie Jones preach. Mom didn’t know that my dad had already trusted Christ as his Savior. It wasn’t long before my mother made the same decision. She bowed her head and confessed her sin, and asked Jesus to be Lord of her life. God changed my parents tremendously. They raised their five children to know and serve the Lord, and they left us a spiritual heritage that has more value than anything this world affords. And “I’d Rather Have Jesus” became my mother’s signature song…..one we heard her sing many, many times over the years. One she sang with honesty for the rest of her life because of the work that God had done in her heart.

Last week we said goodbye to my mother for the final time on this earth. We had really lost her a long time ago to the horrible ravages of Alzheimer’s. She no longer had her memories, her personality, or any of her other faculties. But even Alzheimer’s cannot take the Lord away. He has promised to always be with us, and He always keeps His promises. We saw evidences of His presence with Mom as she struggled in various ways. What sweet comfort it brought to know that deep in her heart and her mind, God was ministering to her in ways that we could not.

Two weeks ago, on the day before the call went out to family that mother was dying, we saw a profound picture of God’s grace in her little body and in her heart. Jan and her daughter, Bethany, had gone to spend some time with Mom in the care home where she lived. Mom was sitting in the commons area, her head down and her eyes closed, unresponsive to the voices and the noises around her. Suddenly, on the television that was playing, a man started singing “Amazing Grace.” Bethany looked down at her grandmother and saw that her lips were moving. Surprised at this, she and Jan leaned down and put their ears to Mom’s moving lips. Here is what they heard coming from my unresponsive mother:

Jesus, Jesus, Jesus,

Sweetest Name I know.

Fills my every longing,

Keeps me singing as I go.

My mother was singing! Jan and Bethany wouldn’t have believed it had they not heard it for themselves. She was clearly singing this beautiful old hymn. She was singing about Jesus, whom she was soon to meet. God’s prompting, God’s presence, was there with Mom in that room. Jan and Bethany joined her in singing, and then Bethany said, “I love you.” Mom clearly said, “I love you” to Bethany, her eyes still closed. Then Jan said, “I love you, Mom.” And Mom said, “I love you” to Jan as well.

Those were the last words that my mother spoke. The next day the family got the call that she was dying, and on Monday, May 4, my mother met Jesus. Jesus, the sweetest name she knew. Jesus, who filled her every longing. Jesus, who kept her “singing as I go.” Singing as she got ready to go to heaven.

Like my brother, John, said at her funeral…..how appropriate that Mom’s walk with the Lord began with a song many years ago. And her life with the Lord ended with a song…..a song that surprised us all, but was such a gift of grace and hope from God.

A gift and an example that we will always, always cherish.

See…And Be…The Blessing

While my husband was mowing our yard on Saturday evening, I decided to run down to the store for some good old fried chicken. Working behind the counter was a familiar face…a sweet woman who often waits on me. I always ask her how she’s doing and ask about her elderly mother who lives with her. She missed seeing Aaron with me and was asking about him. Everyone knows Aaron…trust me on that! 😊

I ordered my chicken, and then asked for a few more pieces to be added a la carte. As she filled the container for me, she told me that she would just put in those extra legs and thighs at no charge. I said no, that I would pay for them, but she insisted on her plan. The reason?

“You are always so kind to me,” she said. “I want to do this for you.”

I was so touched…a little embarrassed…and walked away very blessed.

The next morning our pastor shared a meaning of that very familiar word…the word, “blessed.”

He said that to bless means, “To kneel in order to serve.”

He talked about how Jesus knelt down and washed the disciples’ feet. Jesus was kneeling in order to serve.

We often talk about how we want to be a blessing, to God and to others. We also talk about God blessing us.

But how can I possibly bless God?

I bless God by kneeling and serving. I kneel before God, certainly. But I am also to be like Jesus and kneel in service before the people in my life.

As Gary and I listened to the sermon, it hit me. God had given me a sweet object lesson of this “blessing” principle just the evening before.

I had blessed this deli worker by showing her that I cared about her and her life. She turned around and blessed me by giving me some free chicken. I wasn’t showing her kindness for the purpose of getting something free, but my kindness gave her the desire to bless me in return.

As I serve God, I am blessing Him…and He, in return, will bless me.

I don’t mean that God will give me free stuff. I mean that God will kneel down in His kindness and will bless me with joy…peace…love…grace…and other such sweet blessings that are promised to me all through scripture.

Sometimes, though, we think of serving God in big, obvious, public ways. Our human nature and our culture tend to value the well-known over the little-known.

Over the years, more and more, God has taken away most of the public ways I had of serving Him. Instead, God has brought home to me that, well, my home is to be my primary place of blessing God and blessing others. This is my personal experience and doesn’t mean that it will be yours as well. But wherever God has put you is where you ARE, by His plan, and that is the place where you can still bless Him and others.

Home can be a hard place to feel like I am a blessing. The sameness and the drudgery of home life, honestly, can squelch the feeling that I often associate with being a blessing.

Cleaning around the toilet can be a blessing? Really?!

But I’m brought back to Jesus, humbling himself by doing the disgusting work of a servant.

Washing the disciples feet can be a blessing? Really?!

Really.

I kneel. And I serve. In the place where God has put me.

I don’t choose the place. I don’t choose the service.

Validation isn’t the important thing.

Serving is the important thing.

For me, I serve God as I serve Aaron. He was given to us by God.

On a seizure day:

While we walk:

Or he TALKS:

When he wins and grins:

Or asks for that homemade milkshake:

The times are precious:

And so are the children and the homes that we are given!

“Bless the Lord, O my soul, and all that is within me, bless His holy name. Bless the Lord, O my soul, and forget none of His benefits.” (Psalm 103:1-2)

Where There’s A Will…

Autism 101: Individuals with autism tend to “…have eccentric preoccupations or odd, intense fixations… They tend to follow their own inclinations regardless of external demands…” (Karen Williams)

You got that one right, Karen!

In our home, living with Aaron means that Gary and I also live with his fixations. Sometimes his obsessions are funny. Sometimes they are maddening. Sometimes they are exhausting.

But always, Aaron will…to finish the above title…find a way to fulfill his inner demands of how his life is to be lived.

Like his mealtime routine. Aaron will always, always, always, have multiple utensils or plates or bowls of whatever kind he desires for each meal. Here was his place setting recently as he ate lunch in the family room.

We have come to expect this, and we don’t even try to correct him. He will make sure to have the proper number of knives, forks, or spoons for every meal. I am just very thankful that I have a dishwasher!

How about movie credits? Gary and I watched a movie yesterday. Afterwards, we wondered where the movie was filmed. We watched the credits to find our answer, which happened to be at the very bottom of the huge stream of names and job titles. And we laughed at ourselves, realizing we had become…for that moment…just like Aaron.

Aaron…who watches movie credits with as much focus as he watches the movie.

WP_20180916_17_54_42_Pro

Aaron loves his Star Light that he turns on every night. It was a Christmas gift from Kyle and Andrea, and he has turned it on every night since then. Aaron very quickly developed his own rules for his Star Light. He wants it turned on just as he is getting into bed.

One night, Gary came upstairs shortly before Aaron was actually getting INTO his bed. Aaron wanted Gary to see his Star Light, so while Gary stood in the doorway, Aaron turned the light on. Gary oohed and aahed, Aaron was very happy, and then off went the light. Maybe two minutes later…tops…Aaron turned the light back on because he was now getting INTO bed and it was the REAL time to turn on his Star Light.

Back to Karen Williams’ quote: Aaron will follow his own inclinations regardless of external demands.

Gary and I are usually the ones making those external demands in many cases.

Let’s talk sweaters…Aaron’s sweaters, to be precise. Of course.

Aaron LOVES his sweaters. Certain sweaters are better than others, and he will wear them until they are worn to bits. He had this old sweater for several years, but it was his very favorite. He wore it or carried it or had it nearby, inside and outside…always.

This year, for Christmas, I ordered him two new sweaters. They are long and flowing, the kind he loves. And love them he does!

He wears one pretty constantly. Inside and outside, his sweater is being worn.

He also wants to wear it to bed, under all his necessary covers…including his new weighted blanket that he loves. This means that sometimes he gets too hot, but he will rarely agree to sleep without his sweater. This happened on Saturday night when he talked about being too hot the night before.

Enter the external demands, made by me. I reminded him that he should remove his sweater before climbing into bed. He was reluctant, but finally agreed to those external forces trying to rearrange his internal inclinations.

We discussed it on his monitor when I went into my bedroom. We discussed it as he stood at my closed bathroom door while I tried to brush my teeth. And he continued to discuss it with Gary after he clomped down two sets of stairs to Gary’s study.

We thought we had won. We were the new KING AND QUEEN OF EXTERNAL DEMANDS!!!!

Silly us.

Soon Gary came upstairs. Aaron called out to him from behind his closed bedroom door, wanting one last word with Dad.

And last word it was…for there lay Aaron.

Wearing his sweater.

On TOP of the covers.

We removed our King and Queen crowns as we climbed into our own bed.

Instead, we wore smiles.

Why fight the inevitable, right?

Aaron will always find a way.

Stay-At-Home With Aaron

This Friday will mark one month that I have kept Aaron home due to COVID-19. To borrow Aaron’s words while I was still able to take him shopping: “You’re getting that because of the Coronavirus, aren’t you?” Said with frustration, I might add, as he has seen this virus as a great deal of unnecessary drama in his life. I think many are feeling that way right now!

The other night he got to video message with two of his friends from his day group. It made him realize how much he misses them and his other friends. I was glad to hear him say that, for getting Aaron to re-enter his former routine may take some doing.

He does love being at home, although some days he is at loose ends. When this first started, I thought of something to do every day that would keep him occupied and happy. Watching some shows during the day, for instance, was a treat for him since it’s something we never do. So many activities we would normally do – eating out, movies, the zoo, shopping – are off limits now, so giving happy moments every day was…and is…vital to Aaron and to ME.

However, Aaron has now become a professional Event Coordinator. 😊 He finds it quite fun to plan our days! But today, after going through the car wash and grabbing a to-go pizza for lunch, I had to say no to driving to a nearby lake. My days are still full of necessary home life, so when added to these fun activities with Aaron, I’m finding myself getting behind. I’m realizing that these are the days I used to wish I had…days at home when I could get so much done…but the “getting so much done” just isn’t happening!

One thing I really wanted to do today…and have wanted to do for many days…is to give a quick update on my stay-at-home life with Aaron. What have we been doing to occupy our time? Let’s see:

Playing Go Fish:

Taking drives and seeing fun wildlife like these turkeys:

Cutting coupons:

Watching favorite programs:

Dairy Queen Blizzards at Lake Afton:

Donuts at Lake Afton (this pattern must stop!):

Walks at Swanson Park:

Practicing with selfies:

Cooking:

Getting a new PC game:

Eating by lantern when the electricity went out:

Pulling Weeds:

IMG_2300 (002)

And relaxing as only Aaron does, crunching mulch:

We’ve had some moments, for sure, but I can honestly say that Aaron has mostly handled our stay-at-home much better than we thought he would. I know that’s because of prayer, and I am so thankful for God’s mercies and strength and wisdom.

We are truly blessed to have so many options of places to go and activities to do that keep us safely distanced from others, yet able to leave the house and get some fresh air and sunshine, hear the birds, and enjoy this new pause in our lives.

How are each of you and your families doing? I pray that God is strengthening you and that you are being encouraged in unexpected ways during these days.

Let’s keep praying for one another, and for our great country. May God keep us safe and wise, and may we continue loving Him and each other in these unprecedented times.

Talking Points #3

Aaron’s been having what may be Myoclonic (jerk) seizures on occasion. While I in no way take these seizures lightly, what he said about it yesterday was pretty funny. He said, “ALL my arms and ALL my legs were shaking!!” Excuse me now – I need to go count his arms and legs to see just how many he has!

Aaron likes to call us Master, sometimes adding a not-so-flattering word with it, like Master of Darkness. It comes from some of his games and movies. Yesterday at Aldi, I told him to carry our bag of groceries to the van while I put the cart up. “Yes, Master,” Aaron replied. The young mother also putting up her cart heard him, and just smiled. I wonder what she thought? Either that I’m a very stern mom, or that we’re way too hooked on I Dream of Jeanie.

Aaron: Did we get any mail today?

Me: Yes, we got three things.

Aaron: Was any of it bad? (Junk mail)

Aaron (Before I could answer): Did Dad tear any of it in that paper breaking thing? (shredder)

Aaron: Mom, you know what I noticed the Olympics is all about?

Pause for me to answer.

Me: What did you notice the Olympics is all about?

Aaron: SNOW!! It’s all about snow!

We’ve explained Winter Olympics and Summer Olympics, but I’m not sure it stuck. ☺️🏂⛷️

On our way home from his day group:

Aaron: I’m STUFFED!! The bacon and eggs you fixed for breakfast, and then I had burritos!

Me: You had burritos for lunch?

Aaron: Yes! Barb and Brandy took me and Yolanda to get burritos.

Me: Were they good?

Aaron: Yeah! The people asked if we wanted beef or chicken for the insides! 🙂 I got chicken!

I never thought of burritos as having “insides.” Not sure I WANT to think of burritos as having “insides!”

I sent some food with Aaron to Paradigm today – peanut butter crackers, cucumbers, a granola bar – so he just told me that they stopped at Quik Trip and he bought two sausage biscuits and a slushie. He added, “Later I ate the food you sent so it would settle my stomach.” Tomorrow I’m just sending Pepto Bismol.

Aaron’s ear was bleeding, so I asked him what happened.

“I was scratching an itch off my ear!” 😄😄

I asked Aaron what movie they went to see today.

Aaron: We saw Samson! He was Noah’s brother, right?

And later: God gave Samson his strength. Then he could beat up people!!

I think we need to revisit that Bible story. 😁

Aaron walked up behind me at 6:44 this morning. He had just gotten out of bed, not even stopping at the bathroom first.

Aaron: Mom, guess what I saw?

Aaron then waited on me to guess.

Me: What did you see?

He reached into his right pocket. Nothing. He reached into his left pocket. Nothing.

Aaron (finally!): Spiders!

Me: WHAT??!! WHERE??!!

Aaron (very calmly): On my floor.

Me (not very calmly): OH DEAR!!!

I grabbed my glasses as I tried to gather my nerve and wondered if our exterminator could make an emergency call today…or if another emergency call would be made and I would soon be in an ambulance.

Aaron was in no hurry as he walked up the hall to his room. TORTURE!!! Once in his room, he turned and gave me a smile. And I knew.

Me: Aaron! Did you just dream about spiders?

Aaron (flatly, but with that smile): Yes.

He is quite happy that he pulled one over on Mom. He should be happy that he is still standing and breathing!

I am, too. Still standing and breathing, that is. And happy. Happy Aaron’s little story was so clever…and NOT true!!

🤣😲🕷️🕸️

Aaron went to the mall today and was telling me that he got an M&M ice cream thing at Dairy Queen. I had told him not to get the triple death by chocolate upon chocolate thing that he usually gets, so he was quite proud of himself for just getting the M&M creation. Then he told me that his friend, Shauna, saw him eating it.

Aaron: Shauna told me that was her favorite.

Me: Did she?

Aaron: Yeah. So is it OK that when it was half high, I let her have the rest?

Aaron not only has a sweet tooth, he also has a sweet side. He loves giving things away to his friends.

And I LOVE how he described giving it to her when he had eaten some of it while Shauna watched. He didn’t give it away until it was “half high.”

He’s not half bad, is he?

And of course I told him it was a very wonderful thing to do.

Me: Aaron, go ahead and take your pills. It’s 9:30.

Aaron, pushing up his sleeve to see his watch: It is not 9:30.

Me: What time is it?

Aaron: 9:26.

Me, in my head: AAAHHHHH!!!!!!!!!!

There. I feel better.

The Bedroom

Aaron went to the Goddard Day School for three years, graduating from there at the age of 21. His teacher, Tom, was just wonderful with Aaron and with all the students. Tom would have one-on-one time with each student. He would fix tea, sit with each one, and just talk and connect. Tom called that time Tea with Tom.

When Aaron was a senior and ready to graduate, he was allowed to quit going to school earlier than those students who weren’t seniors. Tom was still teaching, so one day he contacted me and asked if he could have one more Tea with Tom time with Aaron. He said he would come to our house, so we agreed on a day for Tom to come.

On the morning Tom was to arrive, I had things ready for our Tea with Tom. Tom wanted me to join him and Aaron. Gary was at work, even though he had a bad cold, and couldn’t be there for our tea time. That little detail about Gary having a cold is important.

So is the fact that off our kitchen, down a couple little steps, is a guest bedroom. And a small bathroom. Because of Gary’s bad cold which made him cough all night, he had been sleeping in that guest bedroom. This is another important detail to know.

Tom, Aaron, and I were enjoying our tea as we sat at the kitchen table. Aaron was full of non-stop talking, as always, and Tom was his usual patient self.

Tom turned to me at one point and asked if he could use our bathroom. I pointed him in the direction of the small bathroom. As he headed that way, he saw the bedroom and for some reason he commented about it.

“I didn’t know you had a bedroom there,” Tom innocently said.

And before I could even reply, Aaron answered.

“Yeah,” he flatly replied to Tom. “That’s where my Dad sleeps. He doesn’t sleep with my Mom anymore.”

Well.

There it was, on the table……like a family secret thrown out there for Tom to know.

I was horrified. Mortified.

I looked at Tom, my face flaming at this point. But Tom had turned and was heading for the bathroom.

“It’s not that way,” I somehow managed to say.

“You don’t have to say a thing,” Tom answered.

“YES, I DO!!!!” I blurted out.

So I explained Gary’s cold…..and his coughing……and his thoughtfulness in sleeping in the guest bedroom so as not to bother me……and that he and I were fine.

Why was I having this conversation with a man??!!

And Aaron, as usual, was oblivious to my embarrassment and to Tom’s discomfort with the direction this conversation had taken.

When Tom returned, our Tea with Tom resumed. We chuckled and nothing else was said about this family secret, at least not that I remember.

Some things are best forgotten.

Some things still make us laugh, years later.

And Aaron…..nothing much escapes his notice.

And he will tell it…..sometimes yell it.

Every. Single. Time.

I Love This Place!

For the past few weeks I’ve felt like I live in a snow globe. I’m a figure that’s not fastened down, so when the globe is shaken I just fly all around with the snow. Crazy, to say the least!

Gary and I knew that this was going to happen:

Thankfully his foot surgery was planned and on our calendars many weeks ago. We had time to prepare, even throwing in some minor things like having two bedrooms remodeled. You know how that is. Emptying the rooms of everything; deciding on what supplies to purchase; purchasing supplies; going through drawers and shelves and making multiple donation trips to Goodwill; the remodel itself (great job, Distinctive Designs!!); cleaning; putting everything back in the rooms; and heavy furniture up the stairs or down the stairs (thank you to our son, Andrew, home for Thanksgiving!).

Then there was decorating and preparing for Christmas with all the shopping and wrapping and mailing and cards and cooking yet to do.

Oh, and let’s throw in cleaning our big storage room two days before surgery! Why not??!!

In the midst of it all, there is Aaron. Aaron…trying so hard to maintain his normal.

Aaron’s normal is very vital to him. His normal is as vital to him as breathing or eating. Normal gives him stability and predictability, which he needs to maintain his balance.

Gary and I can roll with the flow, stressful as that flow may sometimes be. Aaron…not so much. When his normal flow of life is redirected…shaken like the snow globe…Aaron most often will react instead of handling the change. Then whatever is causing his life change, as he sees it, becomes the enemy.

The enemy may be an event. That’s why holidays, parties, trips, or other out-of-the-norm happenings can rock his world. Aaron’s world is what he makes it. His world is set and settled in his brain, everything in its place. His days flow with an established pattern. Can we all spell “ROUTINE?!”

The enemy may also be a person. Any person who disrupts his pattern of life or his way of doing life becomes a huge problem to him. Just ask his siblings about our Christmas family time every year. We all know to expect at least one “Christmas Meltdown” every year. The meltdown often involves some aspect of our family Christmas Eve Bingo game, which combines a party atmosphere with a lot of crazy thrown in from the annoying people who are on his turf and messing up his routine.

Autism at it’s finest, let me tell you!

When Gary and I arrived home the day of his surgery, Aaron was so very happy to see us. I saw him scan over Gary’s huge wrapping with his ever-observant eyes, but Aaron never asked how the surgery went or how Gary was feeling.

Instead, Aaron talked up a storm as we got Gary settled in bed. He ran up to his bedroom, returning with a soft blanket of his that he wanted Gary to use. He ran outside in the dark and brought in our trashcans that were at the end of the driveway. He kept looking for ways to help and was just SO happy to have us home. I’m not sure how much of that happiness rested on the fact that his dad was all right or on the fact that we were home, at last, and now life could be back to normal.

Normal! Right?!

Wrong.

Dad was in the guest bedroom. Mom had to make trips down to Dillon’s for meds and food that sounded good to Dad and drinks to settle his stomach. Dad wasn’t talking much and Mom was distracted. People were calling. Or coming to the house.

The morning after surgery, Aaron was getting edgy. We knew it. And Gary, bless his heart…in the shape he was in…managed to ask Aaron about his game he was playing. Aaron was off and running then! Talk, talk, talk!! Talk about what he loved and what he understood and what mattered to him.

Honestly, Dad’s foot and leg all propped up on the living room couch didn’t matter to Aaron at that point. How Dad slept didn’t matter. Dad’s possible pain didn’t matter.

It seems heartless to us, but we know Aaron. We know how autism is often defined by a narcissistic way of viewing the world.

We had some storms that first week. It got rough. My reactions weren’t always kind and loving toward Aaron.

Then after the snow would settle in our upside-down snow globe world, Aaron would look at us and immediately launch into talk of aliens and outer space and his latest movie and anything…ANYTHING…but real life and feelings and concern for us. Then his anger would erupt if he sensed our lack of interest in what he was saying.

Just so exhausting.

One night after going around and around, Aaron regrouped quickly and stood by Gary in the living room talking about what show he was watching or game he was playing. This was Aaron’s happy place with his captive audience.

This past week, our second week post-surgery, Aaron came down with the crud bug. Fever, cough, sore throat, aching all over. A doctor visit, some meds, and he is better. But again, a sick Aaron was a touchy Aaron.

Until he thought of Christmas lights.

“Mom?” he asked on evening. “Can we go look at the lights on the big white house?”

It wasn’t necessarily what I had time or interest in at that moment, but I saw the hope on his face and so off we went. We saw the lights and then drove on to look at some other lights close by in several neighborhoods.

A couple nights later, after our neighbor mentioned a near neighborhood that was all decked out in lights, Aaron and I went out again. House after house was glowing and flashing and bright and fun. Aaron was mesmerized, leaning forward in his seat and very still, with a smile on his face.

“I LOVE this place!!” he finally exclaimed.

It warmed my heart so much for him to express such joy.

It warmed my heart to be the one who showed him this place he loved.

I’ll admit that sometimes I don’t love this place where God has us. Life with Aaron can be very tiring. He requires or demands things from us that we at times have no energy or interest in giving.

This place isn’t always bright and pretty and rewarding and fun. Sometimes we wonder why we’re here and what we’re doing.

But this place is where God has put us.

Aaron is God’s gift to us.

Sometimes we don’t feel that sentiment. Gary and I get weary…lonely…at the end of ourselves.

I’m sure the man Jesus…God’s Son…felt all that and more, thousands of times over, as He walked this sad earth.

And because Jesus walked with us, He also understands our weaknesses and our human thoughts. He is here with us to give us His grace and enable us to do the same with Aaron.

Aaron may not always love this place, either. When his life is askew and he is miserable, loving this place is the last thing on his mind.

But may he know, when the snow is settled and the storm is over, that HE is loved.

Loved by God, as are we…and loved by his parents.

May this place, where we are at the moment, be a place of love when all is said and done.

And may your place, dear one…hard as it may be…be a place filled with God’s love for you and through you.

Bright like the lights of this beautiful season!

In the Crosswalk

What is it with Aaron and crosswalks??!!

I was asking myself this question yet again yesterday as Aaron and I exited Wal-Mart.

I could also ask the question, “What is it with Aaron and Wal-Mart??!!”

Oh, the stories!

As we got out of the van yesterday, while we were still rather obscurely hidden in the parking lot, I reminded Aaron to pull up his jeans. He did that while tucking in his shirt, but for some reason yesterday his shirt tucking had a rather dramatic and unsettling beginning. It involved Aaron fully sticking his arm down the FRONT of his pants, getting his shirt settled down there, and then working his way around the remaining waistband.

I told you it was unsettling.

“Aaron, good grief, you don’t need to make such a production of tucking your shirt in,” I instructed him as we walked through the store and he decided that his jeans and shirt needed repositioning several times.

Several times in the same manner mentioned above.

When will I ever learn to quit walking ahead of Aaron in Wal-Mart?

You would think after the nightie story and the falling cereal display story and the singing story…that I would know better.

I was in full “ hurry-to-the-van-while-mentally-checking-off-my-to-do-list-and-plan-my-next-stop-for-that-one-missing-item” mode as Aaron and I exited Wal-Mart. Which means I wasn’t paying attention to lagging Aaron.

Instinct kicked in, I guess, because I turned around IN the crosswalk, with cars and staring drivers on either side of us, just in time to see Aaron pulling up his jeans and tucking in his shirt.

And doing it in that same disturbing manner!!!

IN THE MIDDLE OF THE CROSSWALK!!!!!

“AARON!!!” I calmly insisted, “STOP IT!!”

I said this while continuing to walk as if nothing was amiss at all.

Aaron knew then that he had erred, so he scurried up beside me as we left the embarrassing crosswalk.

“Well, I had to pull my pants up!” Aaron explained.

“In the middle of the crosswalk?!” I asked.

“What’s wrong with that?” Aaron questioned.

I just took a deep breath, reminded myself not to shame Aaron, and proceeded to once again remind him of how some things are best done in a less public setting.

Trust me, many of Aaron’s actions are best done in a MUCH less public setting!!

But Aaron truly doesn’t have a concept of social norms like you and I do. No amount of proper parenting, wise advice, careful instruction, and repeated modeling of acceptable behaviors has…or ever will…change him.

I mean, he does show some improvements in some areas. He hasn’t made his loud farting noise with his mouth in the middle of Wal-Mart in some time, come to think of it.

He can be so funny, but he can also be so exhausting. The exhaustion is mostly mental for me and Gary with some emotional thrown in as well.

A big part of it is Aaron’s talking. He loves to follow us around the house, sometimes a LOT, and talk…always a LOT!!

Our son, Andrew, drove home from Indianapolis for Thanksgiving. Aaron had fresh ears to listen to all his talking, but he also had competition. The competition comes into play for Aaron because now he must share our attention. He is not the only person in the house, and he must share his podium with his brother.

This is difficult for Aaron, try as he might to be patient. Another issue is the topic of our conversations. Aaron’s topics are typically about aliens, Star Wars or Transformers or Terminators or whatever else he is watching, relational issues at his day group, and more about aliens and outer space and droids and what-do-we-think about aliens and outer space and droids, etc., etc., etc.

All of us are like the drivers in the crosswalk, where Aaron has the right-of-way and we must wait for him to cross. No amount of confirmation from us toward Aaron can change the fact that his mind-numbing conversations dull our responses to him…and he senses this.

He also truly wants to be the ONLY one talking, and this is where we must step in and remind him to take his turn. This creates anger on his part and resentment toward the person who has pushed him off his podium, albeit unwittingly, but done none-the-less. We all understand this about Aaron, and even expect it, but still it’s tiring.

On the day before Thanksgiving, Gary got home early from work so we along with Andrew picked Aaron up from his day group and went out to eat in Old Town. Aaron had a seizure early that morning, and another one about an hour before we picked him up, but it didn’t dull his tongue. Not one bit. 😊

But my favorite picture of our Thanksgiving was when Aaron waddled into the kitchen wearing his shark blanket – a gift from Andrea and Kyle for his birthday – and proceeded to continue talking. It was just hilarious to see him standing there, oblivious to how he looked, and still talking up a storm.

Again, we were trapped in the crosswalk…all of us with hidden smiles on our faces…and Aaron unaware of how comical he looked.

Living with Aaron isn’t always easy, especially when we’re already stressed about other life events and concerns. Having to stop on a busy day for people in the crosswalk isn’t always fun, either. So, when we’re rushing to get ready for the holidays in the midst of having some remodeling done, with lots of furniture to move around and mess to clean up – thanks for your awesome help, Andrew!! – and Gary is having foot surgery on Monday and will be incapacitated for a long time in a house full of stairs!! – and there’s decorating and shopping and surgery prep and just LIFE!!…

Those crosswalks can be very, very irritating and draining.

It helps to be able to smile and sometimes laugh and to think of Aaron in his shark outfit, not to be derailed from talking!

The pulling up his pants thing, though. Some things are best forgotten.

My apologies to all the drivers at that crosswalk.

It was memorable, I’m sure. 😊 😊

Aaron usually is.

	Patty hesaidwhatks on Being Aaron’s Mother
	Patty hesaidwhatks on Being Aaron’s Mother
	Patty hesaidwhatks on Being Aaron’s Mother
	Sharon Howell on Being Aaron’s Mother
	DONNA G MADDOX on Being Aaron’s Mother