Special Needs Adults – He Said What?!

Aaron’s Move: Battle of the Books

The day of Aaron’s move to a group home is drawing near. He will be moving on Monday, August 3. It’s still hard to believe we’re really doing this.

Aaron continues to talk excitedly about moving to anyone who will listen, or to anyone who might pause near him in a store aisle, or to anyone whom he thinks he might know even if he doesn’t……

If you see us out and about in the next few days you might want to hide unless you have extra time to listen to Aaron talk ALL about moving.

But Aaron is also showing some concerns about this huge change in his life. He’s been talking more this week about missing us when he leaves, and about not wanting to leave his room. Some of his increased concerns are no doubt because we have started moving some of his things over to his group home.

Aaron loves his Handy Answer Books. I counted 31 of those books! He has had them stacked in a very high pile beside his bed. He won’t hear of any better ideas for their storage, so his mountain of books has stayed there and has grown even taller with each new book.

A couple days ago I put the books in three baskets and carried them to our kitchen, where I put them on our kitchen table bench waiting to be taken to his new room.

I picked him up from his day group that afternoon. He hurried inside and by the time I walked in the house, the books were not on the bench. I knew exactly where they would be.

Sure enough, quick as a flash he had put the books beside his bed where, to him, they belong. At least they were still in the baskets.

“Hey Aaron,” I said. “I had those books downstairs so that we can take them to your new room tomorrow.”

“Well, I’M not moving tomorrow,” he quickly responded. “I want them to stay here!”

I left it alone for awhile. Later I broached the sensitive book subject again and he agreed to let us take them to his group home. A small yet huge step for him.

He came downstairs before he went to bed to dig in his books until he was satisfied with what he needed to see. I just watched, not wanting to pester him in whatever his needed mission was at that moment.

Dear Aaron. I know we can’t begin to imagine the turmoil in his life that the removal of his favorite books caused. They are safely in his new room across town now, waiting for him to join them again.

Aaron is putting on a brave face, but we know that this change is more monumental to him than we can ever fully realize.

Only God knows what thoughts are rumbling around Aaron’s brain as he sees the only life he’s known being uprooted and drastically changed.

We know God is in it and that He will take care of Aaron. He knows Aaron even better than we do and loves him even more.

God knows our worried thoughts, too, and that my heart that feels like it might break.

God didn’t clearly answer our two very huge prayers regarding Aaron moving only to leave him or us stranded. We know that in our heads. Our hearts are taking a little longer to adjust.

But I do look forward to seeing how this move will show us God’s loving care in very real and sweet ways.

And I would not be at all surprised to walk in Aaron’s new room one day to find all 31 Handy Answer books out of their bookcase and stacked on the floor beside his bed in a very tall book tower.

Don’t tell Aaron, but I don’t think I would mind that one bit.

Moving Aaron

Yes, you read that title correctly. Aaron is moving!

We have known for a long time that moving Aaron to a group home would need to be a part of his future. But that part of his future was something we would always refer to as coming someday. The prospect of him moving really wasn’t anywhere near a reality to us, though we knew that this “someday” would…someday…need to be THE day.

Gary and I have faced the truth that we are officially in our old age. We have never wanted or planned for either of our other children to be responsible for Aaron moving when we are gone. We know that planning for and carrying out Aaron’s next steps in life should be our responsibility, not theirs. We also have known that facing this big challenge should be done before a crisis of some sort hits me or Gary.

But what we have known for years in our hearts and on paper has been extremely hard to carry out in Aaron’s life…and in ours. So many obstacles. So many emotions. So many reasons to wait until a better time.

A few months ago, we put out some little feelers to our good friend at Aaron’s day group. She is like a second mother to Aaron and has known him for years. I told Barb that we were ready…maybe?…to pursue these next difficult decisions for Aaron.

Aaron has a sweet friend at his day group. Victoria and Aaron have a very special relationship. We finally started letting Aaron call Victoria his girlfriend last year. They really do seem to love each other.

We talked and prayed about Aaron moving but had no idea how on earth to make this happen. Aaron would NOT want to leave home. He would be very angry and resistant to even the idea, much less an actual move.

One day I told Gary that the only way I could see this working was if there would be an open room in Victoria’s group home. Co-ed group homes are common. But that was a real stretch, I knew. Her house was full, with no vacancies expected. But I prayed anyway that if this was God’s will then a room in that house would open.

On May 4^th, I got a text from Barb. She told me there had been a change and that suddenly there was a room opening in Victoria’s house. Oh my! Talk about mixed emotions! We had excitement mixed with concern. But deep down I knew that God had opened a very definite door for us. We could not walk away and ignore this precise answer to prayer. Gary agreed and so we knew we must move forward.

Our other prayer now was that Aaron would want to move. This was another huge obstacle that we saw no way around but for God to work a miracle in Aaron’s heart.

On the day Barb told us about the open room, I started a journal of God’s doings during this process. I would open my Bible and read on those pages. On May 5^th, the day after Barb told us about the room, here is what I read.

“When my spirit was overwhelmed within me, You knew my path.” Psalm 142:3

And: “You have worked wonders, plans formed long ago with perfect faithfulness.” Isaiah 25:1

God strengthened my spirit so much that morning with those precious promises about this path He had put us on for Aaron. I certainly did feel overwhelmed, but I knew that God knew my path. Our path. His plans for Aaron and for us would be covered by His perfect faithfulness to all of us.

With Barb’s help, we planned for Aaron to go to the group home one day for supper. We had Victoria ask him and he was beyond excited. That day he rode to the house in the van with Victoria and the rest of the residents.

He hung out there for a few hours and ate supper. While there, the staff showed him the empty bedroom, and they talked to him about moving there.

When I went to pick him up, I cringed when Aaron told me that they had shown him the room and asked him if he would like to live there. I didn’t know they would do that yet. But Aaron was all about it! He thought that was a great idea!

Since then, Aaron has still been very upbeat about moving. It’s amazing! Another very big answer to prayer!

But he’s also going around telling everyone that he’s going to move in with his girlfriend.

“Um, it’s not exactly like that,” I feel compelled to add.

So here we are. We are having our intake meeting next week. I’m not sure of an exact move-in date yet.

My emotions are all over the place. You can imagine. I know we’ll have bumps in the road as Aaron adjusts to leaving home. He is expressing some fears about that.

And I’m expressing my fears to some, but mainly to God. Who can take care of Aaron like I do? Who understands him and can read him like a book? Who will be on alert for his seizures and take care of him when they happen? Who will take him for a slushie or a milkshake? And on and on and on.

But the God Who so definitely opened this door will take care of all those details and will take care of Aaron and of me during this huge transition.

My verse for May 30^th: “Do not fear, for I am with you. Do not anxiously look about you, for I am your God. I will strengthen you; surely I will help you; surely I will uphold you with My righteous right hand.” Isaiah 41:10

How good to know we can trust God with each chapter of our lives, and of Aaron’s!

Being Aaron’s Mother

I was awake early this morning, looking forward to coffee and quiet time before the busy start of the day began.

But just as I was climbing out of bed, so was You-Know-Who.

I thought maybe he would just go to the bathroom and back to bed. But that hope was dashed when I heard him turn on his lamp that sits on his nightstand. Turning that lamp on usually means he’s up to stay.

No sooner was I downstairs with my cup of coffee than I heard his familiar thump-thump-thump down the stairs. There he stood beside the table, staring at me.

I smiled and wondered if he could tell my heart wasn’t in it.

“Hey Aaron,” I said. “It’s early and you could still sleep some. Do you want to go back to bed?”

“No,” he replied. “I want my coffee.”

“Are you sure?” I asked.

“Yes,” he repeated.

I gave him a playful look along with a little laugh.

“Don’t laugh at me!” he angrily said. “I don’t like to be laughed at!”

And we were off and running.

I tried to explain the difference in teasing and being rude for what I’m sure must be the millionth- something time.

And for the millionth-something time Aaron didn’t get it.

He proceeded then to come downstairs repeatedly to talk…about anything and everything.

How we didn’t pay him his allowance last night. How barracuda live in the deep ocean and why do unmanned submersibles have to go down deep? How long will it rain? Can you show me on the radar? I think I need to change clothes because it’s cold so can you pick out new ones for me? I’m hungry. Can I have some sausage? Can you fix my stuffed animals in my bed? We can’t go see Sheep Detectives at the theater since it might be crowded today so when will it be a day that’s not Mother’s Day that we can go see it. And so forth and so on and on and on and on….

I sighed and rubbed my eyes.

“What’s wrong?” Aaron asked.

“Oh, nothing,” I answered. “I’m just tired.”

“Well, I wish it wasn’t Mother’s Day and we could go see Sheep Detectives,” was his response.

Dear dear Aaron. So oblivious to other’s feelings much of the time.

I was finally able to slip out on the patio after he was settled in his room. It was nice to listen to the softly falling rain and the birds.

But I thought about how many family’s plans might be disrupted on this wet beginning to Mother’s Day.

Yet we need the rain. Feelings for many were mixed this morning, I was sure.

Mixed feelings much like I was having with Aaron on this Mother’s Day, of all days!

I love Aaron so much but on mornings like this when he interrupts my plans with his talking and his attitude, I feel frustration mounting. He was raining on my morning!

But just like we need the rain despite the inconvenience, I often need Aaron to remind me that being his mother is a calling that God placed on my life.

Living with Aaron isn’t all funny sayings that he comes out with that make us laugh. It’s also repetition that gets very old…anger that tries us to the core…demands that frustrate us…worries about his health and his future that keep us awake at night….

And when despair rains down on me, though I often fail in mothering him with total grace and kindness, God doesn’t fail me.

He is always there to pick up the pieces when I break, to forgive me as I often must forgive Aaron, and to remind me of how much love He has for me and for this unique Aaron that He gave to us.

To all of you who mother special needs children…really, children of any kind…know that God has sent the rain to grow you to be more like Him.

It’s not that he gives special children to very special parents.

It’s that He shows us very common and weak parents what a special God He is.

Another Unkie Aaron Update

It’s been a minute since I wrote an update on Unkie Aaron and his “boy nephew,” as he calls Ryker. And now we happily include his “girl niece.”

And “Unkie” is still what Ryker calls Aaron…adorably so.

But first I want to begin with an object lesson from this morning. Aaron asked me to help him straighten his stuffed animals after he got out of bed, and while I was at it to also help him get his covers in order.

Aaron loves his Christmas blankets and wants to still have them on his bed. He and I got his layers of sheets and blankets all straightened up just so. He is very particular about their placement and careful to get as many wrinkles out as possible. If I ignore this importance in Aaron’s life, I will pay with his frustration that often turns into full-blown anger. But if I show him that I value his emphasis on what to me seems minor, his contentment is well worth the interruption that helping him has caused me.

Sometimes this aspect of autism is very hard to remember and to value. After all these years I still find myself rolling my eyes, sighing, and expecting Aaron to think as I think.

Silly me.

We have had our precious grandchildren over to our house more often lately due to our son-in-law’s work schedule. Initially, this arrangement did not go well with Aaron.

It’s easy for us to want to say, “For crying out loud, what’s not to like?!”

Until we take a deep breath and think like Aaron thinks…or at least try to think like Aaron.

Aaron doesn’t like his routine and schedule to be disrupted any more than he likes his sheets and blankets to be jumbled and wrinkled. A three-year-old and a one-year-old are, to Aaron, major wrinkles in his otherwise (mostly smooth) life at home.

Aaron doesn’t understand that they don’t understand what he wants and likes and needs. It’s an enormous leap for Aaron to comprehend that Ryker thinks like a three-year-old. Aaron has no idea what that even means.

We can’t pick and choose what areas of Aaron’s life are affected by his autistic mind. Every single corner of Aaron’s world is colored by how he thinks and feels and reacts, as is all of ours.

We’ve had bursts of anger from Aaron and some very trying situations.

But we have also recently had a long stretch of Aaron looking forward to their visits.

Aaron has been a fun buddy to Ryker more than he has been a grumpy Unkie.

They have played fun games.

Eaten fun food.

Shot nerf guns together.

And Aaron loves for Ryker to join him in his nighttime routine of listening to sounds and watching videos of his “animal of the day.”

Aaron still examines Cora as if she is an unusual little creature to watch and learn about.

And little Cora looks at him the same way. We got such a kick out of her trying to mimic some of Aaron’s hand gestures.

Aaron loves to give her toys to play with, including some of our little garden creatures.

Our home is certainly not typical in many ways but in many other ways the uniqueness that Aaron brings, I do believe, will grow and shape Ryker and Cora into people who will have an innate understanding of special persons like Unkie Aaron.

They may someday be straightening Aaron’s sheets and covers while not being one bit surprised at how important this is to their Unkie Aaron.

And this ability taught to them by their Unkie Aaron will be a very rare and precious gift.

Clinging

I stepped outside yesterday morning to snap a picture of our beautiful sunrise. I turned to walk back inside when it hit me that there was something else I needed to see and to think about.

I mean, I have seen this sight many times this winter, but it was like God was telling me to REALLY see it.

There, up in our big old pin oak, are squirrel’s nests. It’s amazing that they can cling to those branches through all the wind, rain, storms, and snow.

We don’t see those nests in the summer, but when all the leaves are gone, we see them clearly.

A couple weeks ago I was wearily getting ready for bed at the end of a long day. Aaron’s behaviors that day had depleted me. Future decisions we need to make for him were weighing on me. Other deep concerns pulled at my emotions. Soon tears blurred my vision.

Those who have walked with God for a long time will know what I mean when I say that He spoke to my heart right then. He reminded me of the many times in the past when I felt broken and how He told me to go to my Bible and look at what He had to say to me right then and there.

“Silly me,” I thought. “Why haven’t I done that in a while?”

Laying there on my desk was my Bible, open to where I had been studying in the book of Joshua. I looked down and this is the verse that I instantly saw:

“But you are to cling to the Lord your God, as you have done to this day.” (Joshua 23:8)

I just sat down and cried, this time with thankful tears for this simple yet profound reminder from God.

“Just cling to Me, Patty,” God said, “as you have done for all these years to this day.”

Such simple words but so impacting to me.

I’m no longer young. I’ve walked with the Lord for a long time and oh, the many verses I have marked with the dates God gave them to me. Times of trials that led to trust as God spoke to me through His word.

This time in my life is no different than all the other times that God has led and strengthened and sustained me.

It’s like the squirrel’s nests that we can see when all the leaves are gone.

When the trappings of our lives are gone, what is seen?

When we are slammed with huge decisions, disappointment, a scary and unexpected diagnosis, a wayward child, an uncertain future, betrayal…whatever it is…

Will we cling to God like the squirrel’s nests clinging to the pin oak branches?

Will our trust be clear to us and to others even through our pain and our tears?

I now have “February 2026, Aaron,” written beside Joshua 23:8.

And I’m working on clinging to God like a squirrel’s nest in the branches.

The Thanks I Get?

Yesterday Aaron and I delivered roses to his day group friends at Paradigm. Our local Dillon’s store and our sweet friend Jody organize this special treat every year. The smiles and excitement are so much fun to see.

Last night Aaron was cleaning out the bag he takes to Paradigm. He came running into the kitchen holding…something.

“MOM!” he excitedly said, “this is for you!”

He held out…this.

“Victoria wanted me to give you this to say thanks for the rose today!” he explained.

It was so hard not to laugh.

This…was an old, mangled, broken candy cane, complete with food crumbs stuck in the open spots.

Now, I know Aaron and I know with a fair degree of certainty that Victoria did NOT send me that worn out candy cane. Aaron found it in the bottom of his messy bag and impulsively came up with what he thought was a solid story whereupon he could gift me with…this.

Aaron’s love language is giving gifts.

He just needs a little work sometimes on the choice of gifts he gives.

We’ve been having some rough times with Aaron. He’s been struggling with some things that make him respond with anger toward us.

A trait of autism is a focus on oneself because they want their world to operate in the order that gives them peace. Interruptions to that order can cause lots of anger, taken out on me and Gary at home.

Then there’s the care that Aaron requires on so many levels, care that often ties us down and intrudes upon the way we sometimes want OUR world to go.

I’m not complaining and I hope I don’t sound selfish. These are just the facts. Parents of children are caregivers, and having our adult Aaron still with us is like having a child still at home. Special needs then compound the situation a lot!

It’s easy to get mired down in the daily and to feel like all I do for Aaron is unrecognized by him, which is often true.

Like I’m left holding onto more broken when I’ve had enough, thank you.

But one morning I was especially encouraged when I read the words of Nehemiah 5:19:

“Remember me with favor, O my God, for all that I have done for this people.”

Caregiving is so often self-sacrificing, but it’s a walk of life that honors God. I don’t always have the right attitude, and I have anger issues sometimes, too.

Yet so many times, during the mundane or dirty work, when I am tired and feeling very unappreciated, I remember that I am remembered.

I am remembered by God. He sees me.

And everything I do, I really am to do for Him.

There are many of us working day after day after day to care for someone in our lives. We are not on a public stage, sought after and held in high esteem.

But we are noticed by God, whom Hebrews tells us will not forget our work and labor of love we have shown for Him by helping His people.

And this…this is a promise I can hold on to when the serving is hard.

It’s like the biggest and best thanks ever!

Notice The Flowers

I hurried into the house one afternoon with my sister-in-law. We had been running pre-Christmas errands. My mind was on many things that needed to be done as I hurried around the kitchen putting items away, planning which to-do item on my list to do next, talking, hanging up my coat…and then I saw them. There in the middle of the kitchen table was a vase of beautiful flowers. I had been scurrying all over that area but was so occupied in my busy that I didn’t even see the beauty and the love right there in front of me.

I was embarrassed. My husband had bought those for me for no other reason than to show his love for me and I hadn’t even seen them for quite a long time. I thanked him profusely and he just laughed. He knows how I am at Christmas.

We’ve had some sweet ups and some rough downs with Aaron lately. It’s a struggle for him to share his home and change his routine during Christmas. He has had times of deep anger and strong words. Sadly, we have in some moments reacted in the same way to him.

We are not always the poster children for patience.

Remember the old hymn, Count Your Many Blessings? I love the last verse.

So, amid the conflict whether great or small,
Do not be disheartened, God is over all;
Count your many blessings, angels will attend,
Help and comfort give you to your journey’s end.

Sometimes I’m slow to notice God’s blessings when I’m in the middle of stress and worry. But with Aaron in particular it’s easy to get caught up in wondering when the next shoe will drop or rolling our eyes at his demand for sameness in his life at the expense of what we are doing during a very busy time.

But really, instead of rolling my eyes so easily I need to stop and see the flowers right there in front of me…to see the progress he made during all the upheaval of Christmas.

He happily unwrapped candy for our cookies. See the flowers?

He loved a walk with Ryker.

He and Ryker played games.

I don’t have pictures of other blessings. How he shared with Ryker and Cora some of his fun toys along with as many snacks as he could. He gave unexpected hugs and I love you’s before bed several times.

And he was able to wait for our Christmas celebration to come later when more family could be here. Well, mostly wait. He did open two presents on Dec. 25 because Christmas IS ON DECEMBER 25, PEOPLE!!

But he was all smiles on the day we did celebrate Christmas.

All this and so much more across the board have reminded me of Psalm 103:2:

“Bless the Lord, oh my soul, and forget not all His benefits.”

At night when I pray with Aaron, I have started asking him to tell me one thing for which he is thankful. It’s a good lesson for me as well as for him.

I hope these simple words today will remind you to stop and see the flowers right in front of you. God’s benefits and blessings are around us even when all we might be seeing and feeling are the burdens.

Aaron’s Joy to The World

Today after I picked Aaron up from his day group, we went to our vision center to get Aaron’s bent glasses un-bent. This will not be the last time we do this.

Aaron was super excited to show me the Christmas antler headband he had gotten at his day group. Of course, he grabbed it as we left the car and put it on his head as we walked in the door to the vision center.

I saw three other people sitting in the glasses area and thought our wait would be too long so I told Aaron we should just try again tomorrow.

This Plan B of mine was not acceptable to Aaron.

The poor new-to-us receptionist that was headed around the corner to the waiting area was suddenly waylaid by Aaron before I could even grab one of his antlers.

“HEY!” he loudly exclaimed to her. “Can I stay and get my glasses adjusted?”

She stammered as I began to tug on Aaron’s coat while explaining to her that we would come back tomorrow because the wait might be too long.

“No,” Aaron said, “can I get my glasses fixed now? They’re bent!”

“Well, sure,” she kindly responded, “you can get them fixed today.”

“But I think we should come tomorrow,” I began.

But Aaron was taking off his glasses and reached out to hand them to her.

“Here!!” he said, “can you fix them?”

I had to explain that she was not the glasses fixer as she went back to her chair and signed Aaron in and my fate was sealed.

“Wait!” Aaron blurted out as we sat down. “Since we might have to wait, I need to get my sticker book out of the car.”

He was gone in a flash while I watched him from the window and hit the unlock button on my app.

The car would not unlock.

I tried again. Aaron stood there staring at me in the window and shaking his head no.

So out the door I went, got the door unlocked, and Aaron grabbed his book before walking briskly back to the waiting room.

Just as we walked in, the technician who knows us smiled broadly as she called Aaron’s name.

Actually, everyone knows us if I have Aaron with me.

This lady is the kindest person and she loves Aaron. She complimented his green sparkly reindeer antlers and then asked to see his latest sticker book. She took all the time in the world to talk to him, all the while with a huge grin on her face and true delight.

He was already busily filling his sticker book page as she got up to go in the back and work on his glasses. The page wouldn’t stay open, so he took the mirror on the table beside him and put it on the page to hold it open. He acted perfectly at home to do that.

I just relaxed in my chair. It felt good to take a breath after our very hectic and loud entrance. It was a big relief to be with someone who knows Aaron and who loves to talk to him.

Aaron didn’t see anything at all amiss about his loudness. He was totally unaware that all eyes were on him.

But me…even after all these years I still feel the eyes of the people around us and I struggle sometimes with embarrassment.

Yet I looked at Aaron sitting there, green antlers and all, with the mirror holding his book open and his eyes intent on each sticker being placed just right…

And I thought how to Aaron, everything in that moment was just right, too. He was getting his glasses adjusted and he was talking to someone who truly was interested in his every word, and he finished the picture he had started.

I looked around and saw the other technicians smiling at Aaron and at me. His comments were delighting them.

Aaron moved the mirror and gathered his book up after we were done. He was up and off without even a goodbye as our friend just laughed with…joy.

That was it, I thought. Joy.

I saw other patients smiling at us as we walked out, Aaron’s green antlers shining as he led the way to the door and the car.

There it was again as we passed them. Joy.

It was on their faces. I wondered what was on my face when we first came in the waiting room. I can tell you it wasn’t joy.

There are plenty of times that Aaron exasperates me but today it did me lots of good to pause and see that Aaron does have his unique and uninhibited way of spreading his own brand of joy to others.

I want to remember this day.

Green antlers and all.

You’re Looking for Reindeer WHAT?!

Our sweet (and funny!) friends got Aaron this exploding reindeer poop for his birthday.

He LOVES it and has had so much fun sharing it with Ryker. Recently he and I went to Walmart to buy more of the poop (REINDEER poop!).

Of course, Aaron, who loves to accost every Walmart employee within sight to ask them where something is, was on a mission.

We couldn’t locate the poop (REINDEER poop). As we walked up an aisle, Aaron began veering toward a woman in the unmistakable blue Walmart vest.

Me: AARON! Do NOT ask anyone where the reindeer poop is. We can find it ourselves.

We had already looked in one section of Christmas supplies without success. Soon I saw an employee walking our way.

Me: Excuse me, I have a question…..

Aaron: We’re looking for the reindeer poop! Can you tell us where it is?

Me: Aaron, HUSH!

Me (trying again): Is there another section of Christmas decor and so forth?

He was able to answer my question despite his confusion and on our way we went, with me ordering Aaron in no uncertain terms to NOT ask any other poor innocent employees for help finding reindeer poop.

Soon we were in the garden section, scouring the Christmas aisles for reindeer poop, when there stood an unsuspecting blue-vested Walmart employee with a smile on her face. A smile which Aaron took for an open invitation to ask the dreaded question.

Aaron: HEY! Do you know where the reindeer poop is?

Me: AARON!

Aaron: I’m just trying to help us find the reindeer poop.

So I felt the urgent need to do some explaining about reindeer poop while she told us where it might be and I continued with my explanation more fully while Aaron briskly walked toward, hopefully, reindeer poop.

I hurried to catch up with him.

Me: AARON! I will find the reindeer poop!!

We did locate it, finally. Aaron was super excited and rubbed his hands together furiously while I carried the poop prize to self-checkout.

Hey, if any of you want to buy some exploding reindeer poop I can lend Aaron to you. He’ll help you find it or find who will.

I dare you.

Aaron’s Lost Order

One day last week our exterminator was coming. Aaron’s favorite storage place is his bedroom floor, so I had reminded him to clear his floor before we left the house.

Soon a very upset Aaron came bounding up to me.

“Mom!!” he angrily said, “I lost the order of books!!”

When I walked into his room, I saw this.

His large stack of books had taken a tumble, ruining the careful order that Aaron had put them in.

I knew not to dismiss what to us would be no big deal. To Aaron, this mayhem was a HUGE deal.

We got the books put on his bed as I assured him that he could restore the order when he came home later that day.

This is a perfect picture of our life with Aaron, more so lately than perhaps ever before.

Aaron has a rhythm to his life that he creates. His routines and methods are vital to his happiness.

We know better than to discount his routines.

There is always a balance in our life with Aaron as we seek to help him manage disruptions while at the same time validating his concerns…concerns of his that can lead to serious anger outbursts from him, which in turn lead to disruptions in our life.

Sadly, Aaron isn’t concerned about the effects he has on us. Autism often manifests itself as narcissism in Aaron and in most others that I know who struggle with this condition.

I have always said that physical disabilities are much easier understood than behavioral ones.

For instance, we have sadness and sympathy for Aaron when he has seizures. The interruptions in our life that seizures might cause when we must change plans are clearly understood.

But when Aaron loses the order in his life that he has created he reacts with anger that sometimes becomes rage. Nothing we say or do at that point has much if any effect.

I know when Aaron has a seizure that I can’t tell him to just wake up and come take a walk with me. He understandably is unable to do that.

But I must also know that when Aaron has an emotional meltdown over something that has upset him, I can’t tell him to just get over it and stop being ridiculous. He understandably is unable to do that either.

Except most of the time, at least on paper, his behaviors at those times are not understandable to most people.

My husband and I understand what is upsetting Aaron, most of the time, better than anybody.

But again, those behaviors of his…goodness, they take a toll on us some days.

Autism surely is full of puzzle pieces, but we don’t have a picture on the box to tell us what the finished puzzle will look like.

And the pieces keep getting rearranged as Aaron’s order from day to day gets lost in one way or another.

Sometimes, though, a sweet picture starts taking shape from all those random pieces that we’re trying to fit together.

Despite lots of anger lately about having to fit his precious nephew and niece into his life and how their being here at our house causes his order to be mostly lost, he does often pull it together and shows his caring side.

Saturday evening, I watched Ryker climb up on Aaron’s bed and hand Aaron his current favorite Golden Book.

Aaron took the book and started reading Goldilocks and The Three Bears.

When I read that book to Ryker, I use all the voices. Papa Bear has a deep voice. Mama Bear has a medium voice. Baby bear has a little baby voice. Ryker does the same when he “reads” it to us.

When I read it to Ryker, though, we don’t make it through the whole book in one sitting because Ryker is soon off and running to his next adventure.

So, there was Aaron propped up in bed with Ryker kneeling on the bed nearby staring at him. Aaron began to read Goldilocks and The Three Bears.

Except Aaron read the story with no inflection in his voice…no deep voice or medium voice or baby voice.

No excitement. No change in his voice when he read a question.

Just a monotone monologue. It was really hilarious.

And Ryker didn’t move a muscle.

Maybe he was in shock. I have no idea.

But for the first time that I have seen at our house, Ryker let Aaron read the whole book.

I think Ryker senses a difference in Aaron but in his innocence, he accepts his Unkie Aaron just the way he is.

Oh, that we could all do the same!

Especially when Aaron’s life, like his stack of books, has lost its order and we think we might lose our minds.

Ryker let Aaron finish reading his book.

Sometimes we need to let Aaron finish his book with us, too…to try to understand him as we listen to his anger and his words.

To accept Aaron as he is while still trying to teach him and show him that there are other ways to manage life when he loses his order of books.

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