True, Special Friends

Aaron attends a special needs day group on Monday through Friday.  This day group, Paradigm, has clients of various ages – all adults – that have a variety of special needs.  They are out in the community nearly every day attending a host of different events and activities. 

Aaron has developed friendships there over the years.  Like any group that is together as often as they are, there are ups and down.  Then you throw in the special needs, medicines and side effects of medicines, behavior issues, lack of filters, and so much more – and there can be plenty of noise and drama and action. 

But there is something else I have seen there that is very touching.  I have seen empathy for each other.  I have seen real caring.  And I have seen forgiveness.

Aaron is in a very good place right now with his behaviors.  He has, in the past, struggled with anger and has had eruptions because of his lack of control.  He has come home with broken glasses, broken watches, ripped clothes, and many tears…his not being the only tears, for sure.  So while he is still loud in his playfulness, and loud in his talking, and loud and sometimes inappropriate in his teasing – he is basically very happy and helpful. 

When he was having behavior issues at Paradigm, there were very many times when it was his friends who warmly welcomed him back the next day.  He may have hit one of them, or insulted them, or yelled at them…but they would warmly tell him that it was all right, that it was a new day, and that they still liked him. 

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When he would have a rough day, he wouldn’t want to go back to Paradigm the next day.  Almost always, though, with our encouragement he would return.  I remember times when he would want me to walk into the center with him, as if my presence would buffer him from either being rejected or from bolting back out the door before he faced his friends again.

I would hear his friends call out to him.  “Hey, Aaron!” one would say, and then another.  I was just amazed at their forgiveness and their fresh start as they helped Aaron pick up the pieces and have the courage to face them again. 

Once I walked with Aaron over to a table filled with his best friends…all girls, by the way.  😊  Aaron was very nervous about talking to them after whatever had happened the previous day, but they spoke to him as if nothing had happened at all.

Aaron’s eyes filled with tears as they darted around the table, afraid to make contact. 

“I told Mom I was afraid you wouldn’t like me,” he finally said, his voice trembling and thick with emotion.

He was so like a child, this adult man.

“We like you, Aaron,” one of the girls said.  And they all said those same words as they affirmed to Aaron that he was their friend.  What wasn’t voiced, but was as clear as the morning sun, was that they understood Aaron, and they loved and accepted him just the way he was.

Aaron has made huge strides in learning to accept his friends there, as well, on many different levels.  He is sometimes curious about their physical handicaps…wheelchairs, muscle issues, deafness, seizures, etc.

He has seen many behaviors that are disruptive, loud, angry, and irritating.  And other behaviors that are just very unique – the young man who wears a suit and tie every single day, or the one who keeps a towel around his neck, or the person who rocks – and so many, many more. 

He has been curious about those who can’t hear or who can’t talk well.  About those from different ethnic backgrounds.  Or ones who are from different countries.

“Mom!” he said one day.  “Giselda said she was sorry in a Mexican way!” 

What is very sweet to me is to see how this setting is now so very normal to Aaron.  I hope that makes sense.  We might walk into Paradigm and see special needs.  Aaron walks into Paradigm and sees friends.

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Not long ago, as Aaron and I stood at the card counter trying to pick out a greeting card, Aaron remembered that he wanted to tell me something.

“MOM!!” he bellowed for all around to hear.  “I forgot to tell you something!!”

“You did?” I asked when he paused in order to see if I heard him.  How could I not?!

“YES!!” he continued.  “Guess what?!”

Aaron is great at making an effect.

“What?!” I obediently asked.

“Shauna got a NEW wheelchair!!!” he exclaimed.

My emotions tumbled at that point.  I didn’t let Aaron know this as I responded with excitement and asked him to tell me all about it.

You see, most 33 year old men would be saying things like:  “Guess what?  So and so got a new job…or a new car…or is having a new baby.”

But Aaron was just as excited about Shauna’s new wheelchair as anyone else would have been about those other life events.  It was sweet, but sad to me in a way, too.  It was just something that drove home to me once again, out of the blue in front of the card counter, the reality of Aaron’s life.

As I dropped Aaron off at Paradigm a few days later, Shauna and some of his other friends were coming down the sidewalk.  Aaron quickly lowered his window.

“Shauna!!!  Come and show my mom your new wheelchair!!” he yelled.

So she rolled over to the van to show off her new ride, and I loved every minute of it.  Aaron was so very excited as he jumped out, rubbing his hands together in pure delight.  Shauna was all smiles. 

How could I be sad when there are so many reasons to be thankful?

Watching him walk into Paradigm with his friends just gives me every reason in the world to be happy as I drive away, on so many days. 

And to the business owner across the street who one day called the Paradigm clients “a circus”:  I would choose that “circus” over yours any day of the week. 

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Singing We Go

Aaron LOVES listening to CD’s when we drive places…and yes, we still use CD’s in our van, and sometimes in our kitchen, because we’re old and our van is old and Aaron LOVES CD’s. 

Why does he love CD’s?  Well, he can hold the case and look at the title of each song that is playing, as well as the number of the song on the back of the case.  This is orderly and sensible, which makes great sense to Aaron. 

It’s pretty hilarious, actually, to watch Aaron go through this process, and to hear his voice.  He watches the CD player in the van, for instance, and as soon as the number of the song pops up, he then repeats the number to me and tells me the song title.  It doesn’t matter that I haven’t asked for this information.  He gives it anyway.

The current CD that we are playing becomes his sole focus for however long it takes us to finish this CD.  It’s usually several days, so for that period of time we hear all about the singer or the group.  Again, it doesn’t matter that we haven’t asked for this information.  We will get it anyway, an any time of the day or night. 

At this moment in time, Aaron is listening…again…to Ronnie Milsap.  He adores Ronnie Milsap.  He knows all about Ronnie Milsap…where he was born (near Gary’s hometown!)…his childhood…his blindness…and definitely his songs!  And I can’t tell you how many times Aaron has said, “Mom, when Ronnie Milsap sings, he goes like this!”  At which time Aaron jerks his head around just like Ronnie Milsap does, because Aaron has watched him on YouTube and has keenly observed Ronnie Milsap’s head jerking and swaying as he keeps time to the music.  But when Aaron copies those movements, it’s quite hilarious…and to people in cars beside us, it’s probably quite puzzling.

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Another musical trait that Aaron displays, proudly and loudly at times, is to sing a main phrase of the last song that he has heard before we exit the van.  There was the day, etched into my memory, when the last song that was playing before we entered Wal-Mart was Shania Twain’s classic, “Man!  I Feel Like a Woman!”  So yes, Aaron walked around Wal-Mart singing…more like saying…with his unexpressive and flat voice, “Man!  I feel like a woman!” 

That was a very interesting day.

Aaron had a doctor appointment today, so I decided that it was a good day for a morning haircut and beard trim on our way to lunch.  We drove to Great Clips, and on our way Ronnie Milsap was singing.  Aaron reached down between our seats to grab the CD, look at the number displayed on the CD player, and then match the number to the title index on the back of the CD box. 

“Number 6,” Aaron intoned.  “All Together Now Let’s Fall Apart,” he read with no expression. 

We soon sat in Great Clips after confirming our on-line check-in.  Aaron was ready for his hair cut NOW, but I told him that we needed to sit and wait…that it wouldn’t be long. 

I hoped.

Soon another customer entered and walked up to the counter.  Aaron immediately thought that she would delay his haircut.  In disgust, he uttered his favorite saying lately.

“Oh, puhleeeese!” he muttered.

“Aaron!” I then muttered close to his ear.  “Don’t say that!”

So I began tickling his back, which always calms him, and sometimes gives me hope that he’ll be quiet.

Then another customer entered.

“Oh no!!” Aaron said. 

Now I was REALLY tickling his back, pushing him down so that I had better access, and also so that his face and mouth were facing the floor!

He then decided to sing.

“All together now, let’s fall apart,” he spoke/sang in his usual monotone. 

No joke, I thought!! 

But soon his hair cut was done, lunch at Longhorn was happily completed, and we ran home for a few minutes.  I needed to let Jackson out to potty, and I also had another chore to do…a bit of a yucky one.

Aaron had informed me, just before we left for Great Clips, that he MIGHT have wet a little…maybe just a little…in his bed during the night.  It wasn’t a seizure, but instead a result of TOO much water before bed.  He has been read the riot act on that, by the way.

More of the story and the extent of the damage was found just before we left, with no time to clean it up.  I couldn’t stay too irritated for too long, though, when at Longhorn Aaron agreed to ask the blessing before we ate.  He stretched his hand across the table for me to hold.

“Dear Lord,” he began.  “Help me not to pee in my bed again.  And thank you for this food.”

How could I stay mad?

So at home, I gathered up his bedding…ALL of it…his many covers included.  I examined the carpet, and then knelt down in the tight spot between his bed and the wall.  The spray bottle wouldn’t work at first, but eventually it did.  But my legs wouldn’t work well, either, as I struggled to get up.  Just then, I heard Aaron at his desk…singing…

“All together now, let’s fall apart,” he once again flatly sang.

He has no idea how my loud laughter made getting up off the floor even harder!!  And how much it helped dissolve my frustration.

I have two Ronnie Milsap songs that I have decided are Aaron’s songs, though he is clueless about them. 

The first one was playing in the kitchen last night. 

“Number 11,” Aaron said with no emotion.  “There’s No Getting Over Me,” he read. 

“That’s a funny name for a song,” he added.

But it’s a PERFECT song for YOU, Aaron!!  There’s no getting over you!! 

And I don’t want to, either!

The second song?  It was playing when we pulled into the driveway after his doctor visit today.  It’s on the second CD disk, in case you’re wondering.

“Number 1,” Aaron said, of course.  “I Wouldn’t Have Missed It For The World,” he finished.

BINGO!!

 

 

Happy, Helpful, and Forgiving

It’s beyond time for an Aaron update.  I do believe I could write every day about life with that young man of ours.  I wish I had that kind of time, so since I don’t, I’m sitting here wondering how on earth to corral my rambling thoughts on recent…or not so recent…Aaron antics.  And not only his antics, but what those actions show about the real Aaron, deep in that brain of his.

Aaron has been mostly happy lately.  He is showing that happiness in various ways.  One way is by being extra helpful, so he’s been taking out the trash and the recycling; setting the supper table; carrying in groceries; and even helping others in ways that are…well…a little intimidating.

I saw that for the second time yesterday as we left Sam’s.  We were walking to our van when Aaron spied a lady near where we parked, putting her items in her car trunk.  She had a couple heavy packs of drinks.  Before I knew it, Aaron was running toward her.  I knew what he was going to do because he had done this same thing last week at Wal-Mart.

“Aaron!” I said.  “Come back here!”

But he was determined to help this random lady.  She looked up, a tad startled at first, but then she quickly relaxed when she saw Aaron.

“Hey!” Aaron blustered.  “I’ll help!!”

She smiled and actually let him!  Then she looked at me with a big smile, which made me very happy, as Aaron proceeded to put her two heavy drink packages in her car.  She thanked him as he stood there with a huge smile, rubbing his hands together in his Aaron way, and then came back to the van.  And I don’t know who was happiest at that point…Aaron, or me!

The lady last week at Wal-Mart was kind but said no to Aaron.  So as I did then, I once again explained to Aaron that his offer was very nice but that he had to understand that running up to various women at their cars might be scary to them.  Aaron thought this to be strange, even after I explained it to him.  It’s so amazing that he doesn’t get it, that social norms elude him. 

I had just seen this demonstrated a few minutes prior to the parking lot incident, while we were in the self-checkout lane inside Sam’s.  A man in the other lane beside us was trying to get the attendant’s attention.  She was talking to someone else and was unaware that this man needed her help.  He continued to try to get her to notice him.  What I was noticing was that this exchange was bothering Aaron.  He was bothered by the fact that the man’s voice was rising, and he was bothered by the fact that the attendant didn’t hear him.  Therefore, Aaron decided to be helpful once again.

“HEY!!!” he yelled out. 

Well, well, well.  This did get the attendant’s attention.  And Aaron got a very annoyed look from her, with a raised eyebrow to boot.  I apologized to her while correcting Aaron, and then she realized about Aaron, and she was kind and understanding, and Aaron’s face turned very red, and I have no idea what the irate man was doing. 

WHEW!!!!

It was another teaching moment for Aaron, with me doing the teaching and Aaron looking around for someone else to help. 

OK, where was I?

Oh yes, I was talking about how happy Aaron has been and how he shows it.  He was so happy to see my good friend, Jennifer, in Sam’s that he gave her a big hug.  Yeah.  SO big and strong that I texted her last night to see if she was hurt.  She said she’s not.  Oh, Aaron!  Just another social norm and boundary that Aaron doesn’t get. 

Sam’s was pretty exhausting yesterday, can you tell?

In fact, by the end of the day, Gary and I were at the end…of our patience and our wits and our nerves.  I don’t know, it was just such a tiring evening with Aaron.  He wasn’t bad at all.  But goodness, he LOVES to talk!!!!

That’s another way that he shows his happiness.  Talking!  Almost incessant talking!!  He’ll be in his room for a few minutes and then we hear him barreling down the stairs.  He finds us no matter where we are…outside, downstairs, in the garage, on the porch or patio, or in the bathroom.  It matters not!  Aaron has something to say and he WILL say it, even if he’s said it a million times before.  You think I’m exaggerating?  It certainly doesn’t feel like it to me and Gary.

We often tell Aaron that we just talked about this…that he needs to look that up on his computer…that we don’t have a clue about it…and we even throw up our hands as we say, “I DON’T KNOW!!!!”  But Aaron is not easily deterred as he pushes on with his comments and his questions and his observations…over and over and over. 

I wish I could say that I’m ever the wise and patient mom.  I wish I could give examples of how to always be on top of these issues.  But in all honesty…and I do try to write this blog with all honesty…I’m just not.  Not always patient and calm and understanding, much as I want to be. 

At the end of last night, when I was at the end physically, Aaron and I were in the kitchen.  He was talking again and I was just so done.  He, I thought, spilled a little water on the kitchen floor and that was it.  I didn’t yell, but I talked through…I’m ashamed to say it…gritted teeth. 

“Just clean up the water,” I said, in my “gritted teeth” voice.

I hurt Aaron’s feelings. 

“Shut up!” he responded.  More than once.

This prompted a stern rebuke from Gary.

Well, the rest of the evening went fine as Aaron and I went through his bedtime routine.  But when it came time to give him his hug and a kiss on his cheek, he put his arms under his covers and said no.  No goodnight.  No hug.  No kiss. 

“Because you were mean to me,” he said.

So I left his room.  But before long he was at my bathroom door.

“OK, Mom,” he said.  “I’ll say goodnight.”

He walked into his room with me following.  He got under the covers, held out his arms for my hug and accepted my kiss on his cheek.  Bless his heart.  He so wants our love.

Forgiveness is a big part of our life.  We have to forgive each other a lot. 

God forgives, too, and I’m surely thankful for that.

And God understands, as my dear friend Linda reminded me this morning.  She understands this kind of weariness as she reminded me that Jesus often tried to get away to be alone…but the crowds still followed Him.  I’m so thankful that God understands, and ever thankful for the forgiveness and peace He gives.

I’ll end on a funny note.  I am sometimes amazed at how quickly Aaron can be irritated by me.  I mean, really – ME?!  Be irritating?

It is very puzzling, though, at what can set him off.  Like the other morning, when feeding our Great Dane and fixing his pills in some peanut butter, I dipped into some peanut butter for myself.  This really bugged Aaron. 

“MOM!!  You act strange!” he said angrily.

“How do I act strange, Aaron?” I asked.

He stared at me a minute.

“In lots of DIFFERENT ways!” he replied as he turned and walked away.

Now if that’s not the pot calling the kettle black!  HaHa!!

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The Last Puzzle Piece

For some of us, at some point in life, a person will come along who will…through gentle words and a huge kind heart…have a profound and lasting impact.  Gary and I, and our three children, have been privileged to have such a person in our lives.  Here is her story…a very small part of her story…but such a large part to us. 

Her story, at least the part that was to affect us, began before either Gary or I were born.  In the little Smoky Mountain town of Bryson City, North Carolina, a very young couple were married.  Sixteen year old Leo Briggs married 19 year old Ray Moore.

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They were so young, and I’m sure so full of youthful hopes and dreams.  But those hopes and dreams did not fully materialize.  There are many details that are unknown to us…details that don’t need to be known.  At some point the marriage was over, and Ray and Leo moved on with their lives.

Both remarried.  Ray’s second marriage was to be greatly important to us.  You see, Ray married Willene Edmonds.  Ray was in the Merchant Marines, so he took his new bride with him to Port Arthur, Texas…far, far away from the Smoky Mountains of western North Carolina. 

Again, details are sketchy to us, and perhaps that is best.  Willene was soon pregnant, and Ray was thrilled.  That we do know.  What we don’t know is why Willene called her brothers when Ray was out to sea and told them to come to Texas.  She wanted to move home to Bryson City.  So move she did, while Ray was gone, and it seemed that this chapter of her life was over.

The marriage was over, as well.  But Ray really wanted to be there for his baby that was coming.  For some reason, this wasn’t allowed.  Ray did pay for the baby’s birth, but he never got to see his new baby…his son.

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Ray and Willene’s new little son was named William Gary Moore, and known to all as Gary.  I know this Gary very well.  He is my husband, a most wonderful man on whom God’s grace was abundantly given.  It wasn’t easy to be raised without his dad in his life.  It was especially hard to never know why his dad wasn’t in his life. So Gary grew up thinking that Ray didn’t care.  In reality, the opposite was true.  But in those days, especially, secrets were kept close inside a person’s heart, not to be spoken of ever again.

Ray married again, as did Willene years later.  Gary grew up in Bryson City, and was blessed to have many wonderful uncles and other men in his life…men who taught him how to be a man.  Gary spent his last two years of high school living with his Uncle Jay and Aunt Teetle in Winston-Salem, North Carolina.  Then he was drafted into the army during Viet Nam, went to Thailand, and returned home a tired and philosophical young man who still had no father in his life.

God reached down into those mountains, through His Word and through the prayers of his godly grandmother, and miraculously saved Gary.  Gary went to Bible College, where I met him, and the rest is history.  Another marriage took place…ours…and later military life took us around the world. 

In the meantime, Willene was a fabulous part of our lives.  She was a wonderful mother-in-law to me and a very loving Granny to our three children.  But there was never any talk of Ray.  It seemed to be a closed subject.  Willene’s husband died when I was pregnant with Aaron, and she moved back to Bryson City. 

Ray’s wife, unknown to us, died.  Leo’s husband also passed away.  Ray was living back near Winston-Salem, North Carolina.  Leo was living in Florida. 

There is a part of this story that I didn’t mention.  Leo and Willene had been friends growing up together in Bryson City in the 1940’s.  Despite having married the same man, their friendship continued. 

One day, Willene got a phone call.  Leo was on the other end, excitement in her voice.

“Willene!” she exclaimed.  “Guess what?  I’m getting married!!”

Willene was very happy for her friend.

“And guess who I’m marrying?” Leo playfully asked.

“Ray?!” Willene guessed.  And she was right!  Leo and Ray were going to be married…again…after all these years!

Willene was very happy for Ray and Leo.  There was never a hard feeling there at all.  And you know what’s amazing?  Willene went to their wedding, held in Bryson City where they were now living.  Willene and Leo laughed and laughed at what people must have thought.  And Willene gave herself a new name.  She called herself the Wife-in-Law!! 

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During all this time, Leo had begun to do her gentle work.  She began reminding Ray that he had a son and three grandchildren whom he had never met…and that he really needed to meet.  Ray was hesitant, understandably so, after all these years.  But finally, Ray reached out to Gary with a letter.

I will always remember the way this impacted Gary…the way he responded upon receiving this first letter…having this first contact with the dad he had never known.  Gary’s response was actually very concise.

“Patty,” he said, “I just don’t feel like a piece of the puzzle is missing.  He’s never been in my life and I don’t think I need him in it now.”

I had been excited about this new development with Ray, but I also totally understood Gary’s reaction.  So on our end, I was patiently trying to encourage Gary to respond to Ray.  And in North Carolina, Leo was also encouraging Ray not to give up.  Willene, of all things, was very hopeful, too, that this long-closed door would open.

It was God Who did the best work, though, and eventually Gary did write a letter back to Ray.  In the summer of 2000, at Ray and Leo’s beautiful mountain home, father and son finally met.  Ray also got to hug his three grandchildren for the first time.  He became Grandpa…and dad. 

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The next few years were full of communication…of learning about one another…of sharing love too long denied.  It was amazing to see how similar in personality Gary and Ray were.  It was sweet to see them walking together in the mountains they both loved.  We wished we lived closer.


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We also wished we had been given more time.  You see, Ray developed a pre-leukemia condition and was placed on chemo.  He developed some random infection that quickly and unexpectedly took his life in October, 2008.  Once again, time with his dad was denied to Gary, but all of us were very thankful for the time that we DID have.

And it was all because of the loving prodding of Leo.  She knew that this missing puzzle piece truly was of upmost importance.  She knew that her Ray needed to get to know his son and his grandchildren.  It didn’t bother her one bit that they came from his marriage to another woman.  She opened her mouth and her heart when it was extremely important to do so.  It would have been easy to ignore it…to stay silent…to go on with her new life with Ray again. 

Leo made room for all of us in her huge, loving heart.  She is still a part of our lives.  It’s because of her that Gary got to know and love his dad…and call him Dad!  Our children know their Grandpa now.  All of us know that what Leo told me once is very true.

“Ray is a very wonderful man,” she said.  And he certainly was.

And Leo, you are a very wonderful woman!!  We thank you from the bottom of our hearts for completing our family circle.  Your love and influence will never be forgotten. 

As you struggle with your own health issues now and are on Hospice, may you know how deeply you are loved and respected by each of us. 

Thank you for finishing our family puzzle…for completing our picture.  That last piece has been amazing and beautiful!

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Long Time and Long Day

My goodness!  It’s been such a long time since I’ve written anything new on here that I had to look back at my last blog to refresh my memory.  I haven’t been able to write about life because of life being hectic and so busy.  When I don’t write for awhile, I feel like I’m covered up with things that I want to talk about.  There are too many happenings to share coherently.  So I hope I will just pull back, focus, and be as brief as possible (since WHEN??!!).

Let me say here that I do write more snippets of life with Aaron on my HeSaidWhat Facebook page.  (https://www.facebook.com/hesaidwhat84/).  You might want to check that out, like it, and follow along.

Now, where was I?  LIFE!

Gary and I did make it to Houston after our crazy few days with Aaron’s seizure injuries, written about in my last blog.  Poor guy!  The morning we left, before Casady (awesome friend!) came over to stay with Aaron, Aaron got out of bed and had blood on his face and pillow.  It was more of a pink blood, but still I was worried about his tooth extraction site.  All was well, though, and he did fine while we were gone.  He only had one seizure during his sleep while Casady was here.

We enjoyed being with our kids in Houston, so much!!  Time with Andrea and her fiancé, Kyle…and our son, Andrew…was great!  It’s always too short, but we’re thankful for every minute.

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It was wonderful to spend time with Kyle before he had to go back out to sea.  Sweet to do a little more wedding planning with Andrea, and to hear about her genetics lab that she manages and of the exciting new project that will soon launch under her leadership.

And it was loud and fast and fun to be at Royal Purple Raceway for the NHRA race that weekend, where Andrew is working now for Leah Pritchett and Don Schumacher Racing.

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We got to take Kyle’s mother, Marie, with us on Sunday and introduce her to this sport that you have to see and HEAR and feel in order to fully appreciate.

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Side note:  Leah was the #1 qualifier that weekend and broke a track speed record!!  And this past weekend, in Atlanta, she and the team took home the Wally!  That means they won the race, for those of you who were like me a few years ago and have no earthly idea what a Wally is!

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Even Aaron, who used to be very jealous of Andrew and who bad-mouthed racing, has become a huge fan.  This past Friday, I picked Aaron up at the theater after his group had watched a movie.  It went like this:

 

Me: Did you like the movie?

Aaron: Not really.

Me: Why not?

Aaron: Well, it was about a volleyball game.

Me: Oh, I love sports movies! Why didn’t you like it?

Aaron: I don’t like volleyball. I only like drag car racing.

 

We never thought we’d see the day!

So Aaron has had a few more falling seizures since our return from Houston.  He scraped his neck on the edge of his desk.

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He fell the following morning as we headed out the door, but I was able to somewhat break his fall, thank the Lord!  Our unfinished floor would have been brutal for landing!  He did bend his glasses but that’s no big deal.  Then he had another seizure that night but was sitting, which was a blessing.

I think I’ve figured out a pattern for these seizures, somewhat.  I changed Aaron’s appointment to his Epileptologist in order for him to be seen sooner.  Gary and I have decided to try CBD oil, and our doctor agreed to that plan.  It arrived today and I’m anxious for Aaron to give it a go…and praying that it will help his seizures, and aid in other ways as well.  Aaron has lost lots of weight and has been over drugged, big time, so we really weren’t wanting to go back to adding more meds.  We have lowered his seizure drugs and are hoping we can stay there.  I was reminded this morning as we drove to his day group about how very tired these drugs make him.

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Scenes like that tug at my heart.  I so desire for Aaron to live as normal a life as possible…to feel alert and strong…to be happy.  Many things beyond his control so often prevent that from happening for him.  Seizures…autism…behaviors – all of it can make his life challenging.  One minute he has me laughing…then he has me crying…later I want to throttle him.  So it went on Tuesday.

Our van was in the shop for new tires and some other necessary work.  I couldn’t take Aaron to Paradigm, his day group.  He was quite happy about that, for no matter how much he loves Paradigm and his friends there, he thinks that staying at home is the absolute BEST!  Here is what I wrote on my Facebook page about one of our morning encounters that day.

 

Aaron is staying home today because our van is in the shop for new tires and a check-up. Therefore, I can’t drive Aaron to Paradigm.

Therefore, Aaron is following me around as he talks…and talks…and talks.

Therefore, I have already told Aaron several times that he needs to go find something to do.

It is only 8:37.

Aaron found something to do. He is watching Falling Skies, so he hurried downstairs to tell me that the Queen Skitter Alien is big. Why is she big? Why is she the Queen? Why is there not a King?

Therefore, we discussed Queen Ants and Queen Bees, including their size, which is large. Huge, even, according to Aaron.

There ARE times that Aaron does connect the dots. Usually in ways that are unwanted.

Therefore, Aaron just barged down the stairs with this tidbit:

“Mom!! You’re the Queen, because you’re HUGE!!”

Therefore, I gave Aaron my best stink-eye stare, which he finds quite funny.

Therefore, it’s gonna be a LOOOONG day!!!!!

 

I had no idea when I wrote that about WHAT a long day it was going to be.  Aaron was first funny…

And then Aaron pulled at my heart.  I was outside watering and weeding some, and Aaron decided to “play in the mulch,” as he calls it.  He has always, since he was a little boy, enjoyed breaking sticks and leaves and mulch into tiny pieces, and watching it fall into his trash can.  It’s a very autistic behavior which relaxes and calms and focuses him.  But there is something about it, especially now that he’s an adult, that just touches my heart for him.

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He also decided to lay back on the sidewalk for a minute, and I wondered what neighbors or passersby may have thought if they saw him.  I often wonder that when it comes to Aaron, actually.

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Later came the frustration.  GREAT frustration!

Aaron was not having as much fun staying at home as he thought he would.  He was at loose ends, seemingly bored though constantly denying it, and was continually following me around the house…talking and talking and talking.  I had lots to do and we had no way to go anywhere, except to take our Jackson for a lingering walk around the yard, so Aaron was trapped.

I was trapped!!  In desperation I threw out a life line.  I know better than to do what I did, but I did it anyway.  I told Aaron that when Dad got home from work, we would go to the shop and pick up the van.

What was I thinking??!!  I know not to tell Aaron that something is going to definitely occur…or sometimes to even tell him that it MIGHT occur…because if it doesn’t, then Katie bar the door!!  And I know not to tell him far ahead of time, because the event then becomes his major focus.  I think he had sucked all the oxygen out of the room and I was light-headed.  Not thinking clearly, you know.

Aaron wanted Dad to come home, way before it was time for Gary to be home.  He asked and asked and asked when we were leaving.  I watched the change coming over Aaron with each time he asked that same question, over and over and over.  His focus had narrowed to that one upcoming event, and he wanted it to happen NOW.

When Aaron is like this, his mood becomes angry and impatient.  He wants what he wants, immediately, not later.  It’s totally impossible to veer him from the one thing upon which he is, at this point, obsessing about.

The more I said, the angrier Aaron became.  He was rude and belligerent.  I was tired and frustrated.  I walked away from Aaron several times before saying something that I knew I would regret.  Funny Aaron was now fuming Aaron.

It truly is amazing to see how his mind works at times like this, though I would rather not.  We’ve often said that at these times, Aaron is like a train on a track and there is no derailing him.  A milkshake might have done the trick, but that wasn’t an option.  It was a long late afternoon.

Then Gary got home, unaware of the tension in the house.  His phone rang right away and I listened as he was being told that the van wouldn’t be ready until the next morning.  AAAAHHHHH!!!!

But Aaron was spent, I guess, and with a new person in the house to talk to, he cheered up dramatically.  Gary is amazing, coming home from a demanding job and then dealing with the demands of Aaron.  Aaron was content to later watch some television with me, and then play a game of Skip-Bo…which he won, happily!

Recently, a friend sent Aaron some money for him to use in whatever way he wanted.  As we strolled through Wal-Mart, Aaron found this:

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Aaron flashes the peace sign all the time, so this figurine was perfect for him.  He wanted it right away, so some of Bill’s gift was used for this gift for Aaron.  It’s a perfect fit!

And it’s a perfect reminder to me that peace always returns after the rough spells – both peace in our home and peace in my heart.  That’s because I know the God Who made Aaron.  I know Him personally and He guides my every step, orchestrating each day.

God’s peace is only one of His many gifts to me.

Aaron is another one…another of God’s gifts.  I need to remind myself of that fact at times.

Actually, God has many ways of doing just that in my life…of reminding and refreshing me.

And for that…and for Aaron…I am grateful.

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To Notice or To Ignore

The other night, Aaron and I were watching a DVD as he munched happily on his jar of peanuts.

“Mom!!” he suddenly exclaimed.  “What’s this on my dry roasted and salted peanuts?”

That by itself was funny, the way he says the complete name of the peanuts printed on the jar. Of course, Aaron sees nothing unusual about that at all.

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What WAS unusual, to him, was the little thing that he held up for my viewing.

“What’s what?” I asked as he held something miniscule up for me to see.

So Aaron quickly pushed back his blanket, crawled out of his chair, and stood beside me with his open palm carrying the mystery object.

Before I could tell him what “it” was, Aaron decided to first inform me of what he thought “it” was.

“It’s the cover that’s on some of the peanuts,” he told me.

This isn’t the first time that Aaron has called the thin skin on peanuts a “cover.”  It had been awhile since we had carried on this conversation.  I therefore told him once again that the “cover” was actually a thin skin that remained on some of the peanuts after they were processed.

“A skin?” he asked.  “Can I eat it?”

I assured him that he could eat it.  Later, after he had gone to bed, I found several peanut coverings on the table…ones that he had set aside, not to be eaten along with his dry roasted and salted peanuts.

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Yesterday, Aaron and I ran down to Dillon’s to buy him some lunch.  There in the entry were some little Girl Scouts selling their Girl Scout cookies.  Aaron had walked ahead of me, so as I grabbed a cart one of the girls focused on Aaron.

“Would you like to buy some cookies?” she asked him.

But Aaron had spied the salad bar.  At that moment his entire focus was on lettuce and cheese and boiled eggs and lots of ranch dressing…not on little girls with yummy cookies for sale.

Aaron completely ignored the girl’s question as he barreled in the open door and headed for the salad bar.  I was hurrying after him, because Aaron is sometimes a disaster at salad bars.  My job is to keep his fingers out of the tempting toppings, his head out from under the plastic shield, and to minimize spillage as he insists on “doing it myself!!”

But as I rushed by the sweet little scout, I definitely saw the look on her face.  She was confused by Aaron; for many reasons, I’m sure.  One of the big reasons, though, had to have been the way he completely dissed her and her question.  She was totally ignored.

I smiled at her as I scurried by, thanking her and saying no thanks, and wondering what she must have thought.

I survived the salad bar with Aaron, even as he told me I was rude for taking the tongs away from him as he spilled first some lettuce and then some cheese, and as I yanked the ranch dressing bottle from his hand before he squirted half of it on his salad.  A man was awaiting his turn, and as I turned to walk away he just smiled at me.  Aaron does have a way of becoming the center of attention no matter where we are.

I grabbed a few more items and then we went through the self check-out, me reminding Aaron over and over to stand beside me.  No wandering off to inspect other’s purchases, engage a random stranger in conversation, or sit down at a Starbuck’s table up the aisle while he ignored the worker who asked him if he wanted something.  All of the above…and more…he has done, trust me.

It was easier this time, though, because Aaron was keeping his eyes on his salad.  After I had paid for everything, he took his salad and held it in his two hands.  He walked this way out of the store, holding that salad ever so carefully, as if he was carrying a delicate Ming vase that he dared not jostle at all.

Aaron was once again so focused on his salad that when the young man who was overseeing the self check-out spoke to Aaron, Aaron once again totally ignored him.  And once again I saw that look on the employee’s face, the look that mirrored the one on the little Girl Scout.  A moment of confusion at being dismissed in such fashion.

But I also saw the young man’s face relax with understanding as I was sure he was quickly processing the reality that is Aaron.  And as I walked by, I spoke to him as I chuckled, and he broke out into a huge grin.  He got it!

How is it that Aaron can pay attention to a tiny little peanut “cover” while totally ignoring human beings who are speaking to him?

Elementary, my dear…elementary.

Autism.  Pure and not so simple.

Aaron often notices what we don’t notice, and ignores what we do notice.

When it comes to ignoring people, we can be downright embarrassed at times.  And then there are those times that it’s probably better for him to not notice certain people.

Anyway, the complexities of autism take many years and many experiences to understand.  Plus each individual is just that…an individual who is unique in how autism presents itself in their life.

That’s why it’s called a spectrum.  A “broad range of varied but related ideas or objects.”

Except Aaron is not an idea or an object.  He is a unique and varied human being, one who delights and engages and ignores and yells and frustrates and…

Well, you get the picture.  At least I hope you do!  Because then you can smile more as you enjoy the broad and varied view.

 

 

 

 

Other’s Colors

Do you remember that old song, Color My World, sung by Chicago?  I’ve always LOVED that song!  The meaning of those lyrics takes on a different hue when I think of our life with Aaron, and how he most definitely puts his own color on everything that we do. 

For instance, on Sunday after church I took Aaron with me to our local Dillon’s.  The grocery store is one of Aaron’s very favorite places!  Every aisle is full of discovery to him.  And since those discoveries involve his taste buds, he is especially eager to go along if offered the opportunity. 

Sunday was a chilly day, but not a super cold day.  However, Aaron decided that it was super cold, no matter what I said.  So he walked outside to the van with his toboggan perched goofily on his head and wearing his thick winter gloves.  I could have insisted that he take them off, but after suggesting such, he still wanted to wear his arctic garb and so I just let it go.

We went in the store, and as I headed to the pharmacy, Aaron veered off to explore the candy and snack aisle.  No surprise there!  When I veered up the same aisle to join him later, I had to laugh at the sight of him standing there examining the selection of peanuts. 

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He did not think it at all unusual to still be wearing his hat and his gloves.  Nor did he think it at all unusual to talk loudly when he saw me coming toward him. 

“Mom!!”  he bellowed.  “I’m looking at the peanuts!!”

And with that update, he proceeded to bend over to examine the jar that he thought he wanted.

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And then he had to stretch his arm out to retrieve the perfect jar.

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“See, MOM?!” he continued to bellow.  “These are lightly salted!  Is that good?”

I assured him that this jar was a great choice, and off we went to the self check-out…where he proceeded to talk to the attendant there about his lightly salted peanuts, in his commanding voice and his even more commanding presence…hat and gloves still included.

Sometimes it’s easy to be embarrassed by Aaron.  He doesn’t need the funny hat and gloves to be noticed, trust me!  So on this day, as he was even more noticed than usual, I just smiled and tried to see Aaron through fresh eyes…to relish how unusual he is…and to enjoy the moment.

The colors of that moment could have been red from my red face, and maybe my face was slightly red some of the time.  But that’s OK.  A little red doesn’t hurt me one bit! 

Another aspect of my colorful life with Aaron has been the joy of getting to know other moms of special needs children and adults.  The special bond we share is a rare treasure.  It’s very encouraging to walk the same path with others, though none of us would wish our circumstances on them.  But here we are, together on this journey, and our shared experiences make us all stronger. 

One of those friends, Joyce, has a particularly rough path as she mothers two adult sons with very significant special needs.  I truly am in awe of what she must handle on a “normal” day, much less on the kind of days she has had lately.  One of her sons had his wisdom teeth removed.  Then sickness hit the family, including Joyce and both her special sons.  Intestinal…respiratory…fevers…seizures…many, many sleepless nights. 

Her world is most certainly colored right now with the colors of poop and puke and puffy eyes, to be honest.  So on Sunday afternoon, I called her and I asked if she might want to escape for a bit…go somewhere and catch a breath of fresh air.  Change the colors a bit.

“Yes!” she said.  And a short time later, when I pulled into her driveway, she strode out to my van with a big smile on her face.  I was amazed, though knowing Joyce, I shouldn’t have been.

“Look at your smile!” I told her as she climbed in. 

“Well, I know what I want to do!” she happily declared.

I was expecting her to name a restaurant…or a park…or maybe the mall. 

“I would like to go to Dollar Tree,” she continued, “and get five vases.  Then I want to go buy some tulips and take them up to Oxford Villa.” 

And again, this woman amazed me.  Oxford Villa is a senior assisted living center where her mother used to live.  Joyce wanted to take some vases of flowers there for some of the residents who might not have anyone who loves them and brings them flowers.

Wow!! 

Joyce, I thought, needed some color in her life.  But instead, she wanted to GIVE some color to others!  I was so touched by her unselfishness!  So impacted by yet another lesson taught to me by this dear friend!

Instead of sipping a coke or coffee while eating a piece of dessert somewhere, I watched Joyce buy pretty colored vases and then examine the beautiful colors of tulips at another store.  We realized that Sunday was not the best day to deliver the flowers, though, so that job will be completed another day.  I hope I can help make that delivery!

Sometimes the best way to mix up our colors in this all-too-demanding life of parenting special needs children…or any other part of life that is draining you…is to look beyond yourself and see the needs of others.  To reach out and help carry their burden while taking your eyes off your own for awhile.

There was joy for me in watching goofy looking Aaron find just the right jar of peanuts.

There was joy for me in watching Joyce’s delight in finding just the right colorful vases for some unknown, needy seniors. 

Looking beyond ourselves causes us to see so many stunning colors that otherwise would have remained hidden. 

It’s so worth the effort, even with red cheeks or through tired eyes!

Thank you, Joyce, for your wonderful and colorful friendship!

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