Category: Special Needs Children

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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Helping Dad

Gary has been in the process of putting up a small shed in our back yard, one that can hold our garden tools and implements.  Aaron has been very interested in Gary’s work.  Last Saturday, Aaron knew that Gary was going to be once again laboring out in the heat.  He wanted to go out and help Gary, so after Aaron got his morning routine accomplished, he walked with purpose to the shed site to see what he could do.

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Aaron doesn’t have great manual dexterity or skill, but Gary didn’t say a word about that fact.  He welcomed Aaron, even as he was searching in his mind for a job that Aaron could help with at that particular point. 

He told Aaron that he could help by handing him the screws when he needed them as he worked on securing the floor to the frame underneath.  But for some strange reason, Aaron said that he didn’t want to touch the screws with his hands.

Hmmmmm……

So Gary told Aaron to hold the box of screws, which Aaron was very happy to do.  When Gary needed a screw, he would reach into the box that Aaron held and get one out. 

Now Gary didn’t really need Aaron to hold the box of screws.  Gary could have easily just scooted the box around and keep it handy as he worked.  But he would never have hurt Aaron’s feelings by not giving him a job to do. 

There Aaron sat, in the hot sun, holding the box for Gary.  And talking, I’m quite sure.  Talking about his Star Wars game…….his Star Trek television show that he is watching……the latest movie he has decided to watch……and any number of other things that really only Aaron is interested in.

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I’m also quite sure that Gary would have much preferred some solitude outside……time to work alone after a long week of endless people and situations at work…….time to hear the birds……time to ponder his own thoughts.  But Gary saw beyond his own desires, and saw Aaron’s.  He knew how much Aaron wanted to help and he knew how much it would mean to Aaron to do so.

I believe, too, that Aaron wanted to do a man’s job.  Time with a man, especially time with his dad, fills a need in Aaron that he probably doesn’t even recognize. 

It did my heart so much good to look outside and see the two of them working together.  It did my heart good because I knew that it was doing Aaron’s heart even better.  And it was very pleasing to Gary to give Aaron that opportunity, but even more that Aaron wanted that opportunity to help. 

Such a simple time it was, and not one that lasted all that long.  But the impact on Aaron was huge, one that will last much longer than the actual helping did. 

Aaron walked inside later.  “Dad said I helped!” he proudly told me.  And I praised him for that, which made him smile and rub his hands together in delight before he went on his way.

Gary and I don’t have all the answers to Aaron’s needs.  On some days and in many ways, we feel like we blow it, for sure.  But I looked at this scene on that hot Saturday and I knew that Gary got it right. 

Being a dad is incredibly important, and for a dad of a child with special needs, it’s also incredibly difficult at times. 

How thankful I am for this man who has stood by my side for all these years!   He has stood unbending through hard times, but he has also bent down plenty of times to meet Aaron where he is. 

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Happy Father’s Day to Gary! 

 

The Beauty IN The Beast

My phone rang this morning, and there on the line was my very dear friend, Wendy.  I knew right away from the sound of her voice that something was wrong.  It was Elijah, Wendy said, her tone flat and exhausted.  He had run away again, on his bicycle, and had almost gotten on highway 24.  Somehow Wendy got him back, although we didn’t go into all the details of that.

Elijah, who turned 20 years old yesterday, suffers from the worst form of Epilepsy there is.  He has horrible seizures that often require oxygen, and sometimes require strong drugs to just stop the awful seizing.  Those drugs may help to save his life, but they also cause his life to be miserable after the seizures stop.  Life saving drugs like that are also life changing drugs because of the terrible behaviors that usually follow their use.

It’s an awful catch 22……a dreadful dilemma for Dan and Wendy, his loving parents.  And for Elijah……and the whole family…….they live between a rock and a very, very hard place.

Seizures cause changes in the brain.  These changes can contribute to behaviors that defy reason.  Drugs to control the seizures often have the very unwelcome side effect of causing even more behaviors.  Add to all this the sometimes necessary brain surgeries that children like Elijah have had…..multiple brain surgeries…..and the mix is indeed toxic when it comes to the brain being able to make the connections that you and I take for granted.

Gary and I face these same dilemmas with Aaron, trying to find the balance between seizure control and quality of life……both Aaron’s and ours.  Yet preventing or lessening seizures is of paramount importance.  It’s literally a life or death situation.

But so are behaviors, sometimes, when those behaviors can be as dangerous as Elijah’s.

And let’s not forget autism.

BLAHHHHHH!!!!!

Sometimes it’s just too much!

No disease or syndrome of ANY kind is easy to bear.  But some are, sadly, easier to explain.

I do believe that explaining……let’s just say it……bad behaviors…..is tremendously embarrassing and frustrating to us parents who find ourselves having to do it over and over and over.

We get “the look.”

We get the questions, spoken or not.

We get “the talk” from teachers or our friend’s parents.

And sometimes we DON’T get…..the party invitations…..the friendships……the understanding…….the listening ear……the sympathy, that we so desperately need.  That our special children desperately need.

It was just last year that someone came up to my car window, and with great exasperation, said, “Can’t you DO something about Aaron?”

I looked at her in disbelief and said, “Do you have ANY idea what all we have been doing with Aaron for over 30 years?!”

Today I gave our Aaron a fun day after his four days in the hospital.  We went to see Beauty and the Beast.  Aaron wasn’t totally sure that this was prime movie material, but the thought of popcorn and time with Mom won him over.

As the movie progressed, I was pretty amazed at Aaron.  He was completely enraptured by this movie.  He was so still and quiet, except for the rubbing of his hands together that is just so Aaron.  He rubbed his hands softly, unless there was a very exciting piece of action.    He ate his popcorn but didn’t even want a second tub.

As I glanced at him during the movie, I saw him smiling.  His eyes were big and focused totally on what was taking place on the screen.  He loved the characters and the drama and most definitely the music.

But the character he loved the most was the Beast.  Aaron was registering in his mind every nuance of the Beast……his anger at the first, his softening as the movie progressed, his smiles, and his joy as he fell in love with Belle.

Aaron at one point simply said, “I love this movie!”

And when he said it again, a little later, Aaron laid his head on my shoulder.  It was pretty incredible.

Aaron wasn’t the only one, though, that was completely taken by parts of this love story.  I was, too, but for reasons that went far beyond Belle and The Beast.

I was looking at what can transpire when a Beast – or a person – is loved.  Is truly loved and valued for who they are under their rough exterior.

Wendy’s sad and tired words played through my mind as the music played on the big screen.  My own sometimes weary burden over our Aaron’s behaviors was heavy on my shoulders.

Elijah and Aaron are so much like the Beast in some ways.  They can evoke a measure of disbelief in how they act and in what they say or do.  They are at times unlikable, impossible to understand, and downright annoying.

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But there is another side to them, and to so very many others with these same issues.  A side that blooms under love and understanding, as much as possible.  And when we, or others, can’t really understand we at least know deep down that many actions are beyond their control.

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All of this was playing in my mind as the movie played today, with Aaron’s gently rubbing hands and big smile beside me.  And it’s why tears rolled down my cheeks as the words of this song, Something There, burned into my heart.

            There’s something sweet

            And almost kind.

            But he was mean and he was course and unrefined.

            And now he’s dear,

            And so I’m sure,

            I wonder why I didn’t see it there before.

            New and a bit alarming,

            Who’d have ever thought that this could be?

            True that he’s no Prince Charming,

            But there’s something in him that I simply didn’t see.

Aaron and Elijah, and many like them, have so much more in them than we often see.  They are wonderful and funny and smart and have so much to offer to the world……and the people…..around them.

They need what the Beast needed.  They need the “something there that wasn’t there before,” as the Beast’s friends sang at the end of this song.

That “something” is love.  Some days the love is harder in coming than on other days, but even when our boys aren’t being Prince Charmings, they still deserve as much love and understanding as possible.

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Aaron and Elijah have lots more awareness than we realize.  Aaron has always known who is real and who is not when it comes to how they react to him and interact with him.

You know what Aaron said tonight?

“Mom, Gaston fake loved Belle.”

Aaron gets it.

He knows very well that the Beast loved Belle for who she was as a person.  That’s real love.

And it’s the love our special kids need……the love for who they are, deep under all the medicines and conditions and labels and diagnoses.

I’ll be the first to say that it’s easier to write the words than it is on some days to live it out in real life.

But our kids will grow under unconditional love, some days more than others.

And all of us giving them real love…..not fake love…..will grow even more.

There truly is beauty in the beast, if we just love and look.

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It Makes Me Think

I wrote earlier about Aaron’s difficult day on Monday, and about his desire to take a “sorry card” to his friend whom he had hurt.  ( Another “Sorry Card”)  Time now for a quick update.

I walked into Aaron’s room on Tuesday morning, carrying his cups of coffee and finding him sitting on the edge of his bed.  He was writing in his log book the precise time that he was getting out of bed, and still trying to fully awaken.  I know not to talk a lot to Aaron first thing in the morning.  He needs time to process his new day, time to drink his coffee, time to shower…..and I need time to evaluate his mood.  So I said a simple good morning as I put his coffee on the bookshelf beside his desk.  He never even looked at me, which is typical.

But he did speak. 

“I don’t want to go today,” he softly said.  “I have a headache.”

I never know if he really has a headache, or if he’s just trying to get fully awake.  I don’t try to talk him OUT of having a headache, and neither do I encourage him to indulge his headache. 

“I’m sorry,” I said as I walked out of his room.  “I’m getting in the shower now.”

“I don’t want to go today,” he repeated.

“But what about the “sorry card” and Burger King coupon for J, and the pillow for S, and the green pepper for Barb?” I asked.

He was silent.

I went on about my morning.  I heard him taking a shower and then later heard him on his computer, yelling happily…..which is always a good sign that his outlook has brightened.

I went to his room for his glasses so that I could clean them before we left for Paradigm.  There lay the pillow for S, and the “sorry card” for J, near his empty coffee cups. 

“I’m going, Mom,” he said.  He even sounded cheery, and I was very relieved.

We walked out the door later, Aaron carrying a bag in which we had placed the pillow and the green pepper.  His “sorry card” for J, along with the Burger King coupon, were in a plain envelope and placed in the bag as well.

Aaron went into Paradigm with no hesitation when I dropped him off at the curb.  I prayed as I drove away, that Aaron would be happy and kind and would actually give his gifts to his friends…..especially the “sorry card” to J, for that was most important.

That afternoon my phone rang.  The caller ID displayed Barb’s name, and my heart dropped a little.  Sometimes Aaron calls me using Barb’s phone, and some of those times it’s because he’s unhappy.  Sometimes Barb calls me, though rarely, but usually it’s because Aaron is having a really rough day.  Sometimes Aaron also calls just to loudly laugh and tell me how much fun he is having.  Sometimes answering that phone is like playing Russian Roulette.  I just don’t know what pressing that answer button will bring.

“MOM!!!!” Aaron yelled into the phone.  And I immediately knew that he sounded like all was well.  “I wanted to tell you something!!”

“OK,” I simply answered, hoping for the best.

“I’ve been having a good day!” he continued.

“That’s wonderful!” I replied.  “Did you give J the “sorry card” and the coupon?”

“YES!!!” he said.  “WAIT, MOM!!!  WAIT!!!!” he eagerly said.

Now this always means that Aaron is getting ready to hand the phone off to someone else.  Often it’s Barb, and I’ll hear Aaron say to her, “My mom wants to tell you something!”  And Barb knows full well that I didn’t say I wanted to tell her something, so she gets on the phone laughing and she hears me laughing, and we talk for a minute while Aaron – I’m quite sure – is standing nearby rubbing his hands together furiously.

So on this day I was prepared to once again hear Barb’s voice, but it wasn’t.  I heard a young man’s voice haltingly saying hello to me.  He was a little hard to understand, but I figured he was J.

“Is this J?” I asked him.  He said yes.

“Thank you for the card and the coupon,” he said.

“You’re very welcome, J,” I told him.  “I’m sorry that Aaron hit you.”

“Oh, it’s OK,” he replied.  And he said something else about the coupon.  I could tell he was very happy with that, and with the “sorry card,” too.

He handed the phone back to Aaron, who told me with great exuberance that he had also given the pillow to S and the green pepper to Barb.  We soon hung up, with me feeling very happy for Aaron.

As we drove home that afternoon from Paradigm, we talked about how much it meant to J to get the card and especially the coupon.  We talked about how S smiled when Aaron gave her the pillow.  We talked about how Barb thanked him for the green pepper. 

And we especially talked about how happy it made Aaron when he was kind to his friends……how much better he felt on this drive home because of being nice.

These are simple, elementary truths that seem so hard for him to retain.  Aaron wants to be nice.  He really does.  But his impulses and his lack of filters sometimes drive his “nice” desires out of his brain quickly as he responds to the moment.

The next morning, Wednesday, Aaron wanted me to go inside Paradigm when I dropped him off.  He wanted me to talk to S about the pillow he had given her.  Sometimes my to-do list makes it hard for me to agree to anything extra, but something told me that I should do this for Aaron.  So I parked the van and we both got out, walking inside his day group together.

Aaron immediately strode over to the wheelchair where S was sitting, and I followed. 

“S!!!!” Aaron said, rubbing his hands together.  “Here’s my mom!!!!”

I felt like I was Vanna White on Wheel of Fortune.  “Here’s Vanna White and Pat Sajak!!!!!” 

I walked around to where S could see me, and I patted her arm as I told her hello and asked how she’s doing.  S always says that she is fine, as she is all bent over in her chair.  She amazes me as she does something else I always see when I am with her……she smiles.  A huge, sweet smile.

“Did you like the pillow that Aaron gave you?” I asked her.  There was that wonderful smile again as she looked up at me and said a simple, “Yes.”  But her smile said it all.  It must mean a lot to her, in her limited world, to have friends.  I know that Aaron understands that.

One day, when talking to me about his friendship with her, Aaron said to me, “S doesn’t have much friends.  Am I her friend?”  I told him that he is indeed her friend…..a good friend.

“It makes me think I don’t know what to think,” he answered after some thought.

How sweet!  How telling! 

Friendships do matter to Aaron, very much.  He just doesn’t always know how to make them…..how to maintain them……how to express his feelings to his friends without being loud and rough. 

But sometimes he does, like with S.  He talks a lot to us about her limitations and he feels empathy for her.  So even if he thinks he doesn’t know what to think, the very fact that he IS thinking about these things is very positive to us.  We’re thankful that this week turned out so well…..that Aaron hopefully learned some important lessons…..and that those lessons will actually STICK in his brain!!

Because trust me, there are many many days that Gary and I look at each other after an Aaron episode and scratch our heads.

Aaron’s words could easily be our words:  It makes us think we don’t know what to think!!!

But I do think that this week has been mostly positive, for me and for Aaron and hopefully for his friends. 

It makes me think that we have a very special son, even when he makes me think I don’t know what to think!

And that’s just how it is around here.

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Who Is Aaron Supposed to Be?

I love this picture I found on FB this morning. 

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Aaron certainly has opened our eyes to a whole unique and special way of viewing his world…..which becomes our world as Aaron pulls us in, willing or not.  It doesn’t matter to Aaron if I am busy or tired or embarrassed or if I’ve heard or seen the same thing a zillion times.  To him, each experience seems refreshingly new and fun and definitely shared.

Like yesterday at the grocery store.  I decided to run back to the produce section after I saw the pretty cantaloupes in a fellow shopper’s cart.  Aaron loves everything about the grocery store, except maybe for the aisle with toothpaste and body wash.  If you lived with him awhile, you would see that those items are not a priority or an interest of his.  Unfortunately.

Anyway, I was examining big round cantaloupes while Aaron was pointing out the cool, spritzing water that was spraying over the vegetables nearby.  You would think that this was the first time he had ever seen this gentle spray, but it isn’t.  It’s probably the 753rd time I’ve told him what it is, but he was as excited as if he was seeing it for the first time. 

I turned and headed for the registers after deciding against any cantaloupes.  I knew that Aaron was lagging behind.  I was already in the florist section when I turned to look for Aaron.  There he stood, large and loud Aaron, holding up an artichoke.  His face was just a huge smile as he held his prize up for me to see.  I had to smile, too, standing there among the sunflowers and daisies.  What is it about artichokes that always, always grabs Aaron’s attention?  We have examined them, cooked them, and researched them…..but still Aaron will find those artichokes and hold one up for me to see as if it’s the very first artichoke that we have EVER encountered. 

I smiled and then shook my head no as several surrounding people were turning their heads to see who Aaron was showing his artichoke to.  I could see them making the connection……wondering, I’m sure, about Aaron. 

Maybe if we all saw our world through Aaron eyes, we would smile more and laugh louder and keep our curiosity sharper, even as we age. 

So let me share with you a few snapshots of Aaron in his world.

Making a funny face while we played Skip-Bo, trying hard not to laugh:

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Putting a clothes pin on his earlobe, which is totally nothing new…..but you wouldn’t know that if you looked at how intense and serious he was on this night.

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Playing Skip-Bo, knowing that Mom is looking out with eagle eyes for his cheating attempts.

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Waiting for me to go through the Wal-Mart line, and smiling like this when I looked up and saw WHERE he decided to wait……the chair at the bank desk. 

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Noticing after he got his teeth cleaned that the digital clock on the counter was flashing.  “Your clock is destroyed!” he exclaimed as he pushed by his hygienist and tried to fix the clock.  Incorrect time is intolerable!

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Recovering from three strong night seizures.  We had to cancel his therapy appointment, which to Aaron meant cancelling our lunch plans.  I was nervous about taking him into a restaurant, fearing another seizure, so instead we went through the drive-through window at Little Caesar’s and got him pizza AND breadsticks.  He was happy.  I was happy.

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And finally, sunflowers.  Aaron has wanted sunflowers for such a long time, so this summer while I was in Houston to see Andrea, he and Gary planted sunflowers around our garden.  He has watched them grow and grow and grow, until now they are much taller than he is.  Now he can’t wait for them to bloom.  He was looking at the sunflowers one day when they were much smaller.  “When are they supposed to be the size they’re supposed to be?” he asked.

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I smile at the way he phrases things.  His unique way of expressing himself is a big reason I started this blog.  I can remember wondering, when Aaron was much younger, how he would turn out.  In a sense, I wondered when Aaron was supposed to be the Aaron he’s supposed to be – to borrow Aaron’s wording. 

Well, Gary and I pretty well know that Aaron is now the Aaron he is supposed to be.  Some days that can be discouraging, I’ll admit……on the seizure days or on the hard behavior days or on the days when we are tired and really don’t want to see another artichoke.  Yet Aaron is who he is supposed to be because he is who God created him to be. 

But God gives grace when we need it the most.  He really does.  I don’t think I even realize sometimes in just what forms His grace comes to me.  Yet I do know, often in retrospect, that making it through the frustrations……the fears……the failures…..is the hand and the grace of God upon us. 

And I am so thankful that God gives me pause more times that I can count……moments to pause and enjoy Aaron’s world through Aaron’s eyes.

So you see that the sunflower in the above picture is just too perfect.  Aaron is waiting for his sunflowers to be the size they’re supposed to be and to bloom.  Gary and I see that Aaron is who he is supposed to be, and that every day he blooms in our lives, teaching us to see the world through different eyes. 

I pretty well know, too, what Aaron would say if he looked at this sunflower picture.  “What?!” he would probably say.  “That sunflower is wearing shades!!”

Better to see you with, Aaron.  Better to see you with. 

 

 

 

 

Giving Away Kindness…..Aaron Style

In the last blog I wrote about Aaron, I talked about how much it means to us when others treat him with kindness.   Simple Kindnesses   Even the smallest kindness shown to Aaron is just huge to us, and to him. 

On the flip side of kindnesses being shown to Aaron is the issue of Aaron showing kindness to others.  Sometimes we’re happily surprised at how Aaron will be kind to others.  Sometimes we’re sadly embarrassed at his total lack of kindness.   We never know what a day will hold.  We never know what an hour will hold.  We actually never know from minute to minute what Aaron will display toward others. 

Aaron is pretty self-centered, which is common for those with Asperger’s.  Empathy doesn’t come naturally to him most of the time.  For instance, if I’m crying it makes Aaron either angry or scared.  He doesn’t ask what’s wrong or ask me if I’m OK.  Instead, he might make fun of me or get very agitated.  I know that about him, so I try to never let him see me cry.  I can’t invent that sort of empathy in Aaron, try as I might. 

Therefore, when Aaron shows that he cares about someone, those of us who live and work with Aaron are delighted.  I wrote a few months ago about how I saw Aaron walking to Quik Trip with his day group.   Pictures of Kindness   He purposely waited to be the last in line so that he could walk with his friend, S., who is in a wheelchair.  It melted my heart to see that about him. 

We make it a purpose to help Aaron see practical ways that he can be kind.  For instance, when we eat out I make sure that Aaron always says thank-you to our server.  The same goes for thanking those who help us at Wal-Mart or the grocery store, Great Clips, or anywhere else we go where we receive assistance from others.  I don’t think Aaron would do that by himself if we didn’t remind him over and over to do so.  Verbal kindness is very important to all of us, and we want Aaron to be verbally kind to everyone.  Trust me, sometimes his verbage is anything but that, yet we have to keep reminding and reminding. 

A couple weeks ago, when I went to pick Aaron up at his day group at the end of the day, one of his staff came out to tell me that it was a rough day with Aaron.  I still feel like the parent of a disobedient, still learning kindergartner on those days.  Yet we need and want to know what’s going on so that we can help deal with it and address it at home.  A couple days later, this same staff headed for my car as I waited for Aaron.  Aaron ran behind her, all smiles, and opened the passenger door with gusto as I rolled down my window to talk to Melinda.  I was dreading what I would hear, but right away I was all smiles like Aaron as I listened to Melinda tell me that Aaron was awesome and wonderful and fabulous, and all other sorts of affirming adjectives.  I think I was happier than Aaron was to hear those words! 

And there on Melinda’s shirt, like a name tag, was a note that she pointed out to me…….a note that Aaron had written.  It said, “Melinda is cool.”  She was wearing it with pride, all the while confirming to Aaron that sweet behaviors bring sweet rewards of praise and smiles.  Aaron had written a note to another staff that day as well, on her calendar.  It was just extra sweet and funny.

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At his day group, Aaron also loves to give things away.  We’ve really had to work with him to quit giving away his money.  He’ll give others candy, gum, fruit or sliced veggies from home, whole cucumbers or squash from our garden that he has sometimes hidden in his shorts pockets…….you name it, Aaron has probably tried to give it away at one time or another.  And while that’s nice, there are times we have to draw the line and say no.

There are times that helping Aaron to be kind doesn’t necessarily work into my schedule, but I have to remind myself that he needs help with carrying out some of the things he really wants to do.  For instance, a couple weeks ago he wanted me to bring Jackson with us when I dropped Aaron off in the morning at Paradigm.  I wasn’t really in the mood to do that, but finally I agreed and off we went, Jackson sitting on the seat in the back of the van looking all around and Aaron happily talking in the front seat.

Once at Paradigm, I attached Jackson’s leash to his collar and we went inside.  The other clients love Jackson, so he was received with lots of petting and hugs.  But the one person that Aaron wanted the most to see Jackson was his friend S., who is wheelchair bound and bent over with her disease. 

“Mom!!  Come over here and let S. see Jackson!” Aaron loudly told me from across the room. 

So I took Jackson over to S., and I was so happy to realize that big old Jackson was just the perfect height for S. to just reach over and pet his head.  She doesn’t move well, but Jackson was able to stand there and let her pet him easily.  Aaron stood there rubbing his hands together the way he does when he’s very happy, his face just one big smile.

And the smile on her face was worth every single extra minute it took me to bring Jackson with us that morning.  I left there later with a huge smile on my face that matched hers……and Aaron’s. 

Aaron has also shown kindness to S. by giving her food.  He has told me that sometimes he has to put it in her mouth, and that it seems weird to him to do that.  But then we talk about her limitations and I remind him that he is being a true friend to her. 

He is also sad when he sees her sitting alone.  I’m not there to see how much time he spends with her, but he has said that he does talk to her sometimes when she’s alone.  It makes Aaron sad to see her lonely, and it makes us very glad in that case to see Aaron sad.

One other thing we recently did was to make cookies for Aaron to take to his friends.  It was a week ago on Sunday afternoon that we made the cookies after I suggested it to Aaron the day before.  He was very happy about this idea.  I had him help measure and pour and scoop so that the cookies were genuinely from his hand.

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He enjoyed taking them the next day and sharing them, giving the whole bag with the remaining cookies to one of the guys when I picked him up that day. 

However, we got an incident report concerning the cookies, too.  I think Aaron wasn’t so nice sometimes with sharing his cookies.  This is so typical.  I can’t let it stop us from doing this nice gesture that others enjoy, but it is discouraging sometimes to see Aaron take something good and make it an ugly issue.  We’ll talk about it during our next baking session, and I’ll drop Aaron off that morning hoping and praying that he’ll be nice to everyone and share equally. 

It’s all a lesson to me on how we can’t give up on Aaron.  We have to keep reminding……and training……and instructing…….and teaching…..

And putting ourselves out there in order to help Aaron become the young man we want him to be, at least most of the time.  We can’t expect it all of the time, but we can’t quit trying. 

Parenting never quits for any of us with children, but with our Aaron the parenting REALLY never stops.  Other special needs parents can certainly agree to that. 

May as well make cookies, right?  And be sure to eat some while they’re warm!    

 

Simple Kindnesses

I was at Aldi the other day, having finished my grocery shopping and unloading my groceries from the cart to the back of my van.  Now, if you know anything about Aldi you know that in order to get a shopping cart you must insert a quarter into the cart slot.  Your quarter releases the cart chain and you then have your shopping cart.  When you’re all done, you simply return your cart to the cart holding area, insert the chain, and out pops a quarter for you to take.  You never see random shopping carts littering the parking lot, and you never see an employee pushing a load of carts back to the cart area.  That’s because everyone returns their cart in order to retrieve their quarter.

So there I was, empty cart in hand, when I saw a woman walking in my direction.  She was on her way to do her shopping, her quarter in her hand.  I offered her my cart and she then offered me her quarter, but I did what many other shoppers do…….I told her to just keep her quarter and she was welcome to the cart.  Now you would have thought I had offered to save her $25.00 rather than just $.25.  She was so appreciative, and she said that she would pay it forward to someone else.  I know that Aldi shoppers do this all the time, giving fellow shoppers their empty carts without taking their quarter.  As I got in my van I was all smiles, just like the woman was who now had my cart and still held her quarter.  I thought of what a simple deed that was and yet how very happy it made that woman, and also how very happy it made me.

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Showing kindness can be such a simple act, yet can have such profound effects on the person to whom the kindness is given.  Most simple acts of kindness take no pre-planning or preparation at all.  They simply take an open heart and an eye for opportunities that come our way.

I’m always so thankful for those who show extra kindness to Aaron.  It means so much to me as I’m out with Aaron to see those who show patience and respect for him, even if he’s standing there talking to them about aliens or a computer game or whatever else is in his head……while he might be rubbing his hands together in excitement……or scratching himself inappropriately…..or laughing loudly.  Most people don’t know what to do in that situation but there are those who seem to just be gifted with a special understanding of our special son.

There’s the manager of our nearby Subway, whom I noticed has a knack for focusing on Aaron as if he’s all that matters to her at that moment.  She is completely relaxed with Aaron, and when she told me that her mother worked with special needs and she grew up with those individuals in her home, then I understood.  She asks Aaron what he wants to eat, not asking ME what Aaron wants.  She was on her break one day, sitting in a booth trying to eat her supper, when Aaron spied her and remembered that she paid attention to him.  He stood there talking about the latest movie he had seen, and she just looked up at him and listened as if he was discussing the very most interesting and important thing in the world.  She answered him when he asked her questions.  She made him feel that what he said was valuable.  I wanted to kiss her!!!  But I knew that might be taking it a bit too far!  🙂

There’s Shelly, the hygienist at our dentist’s office who cleans Aaron’s teeth.  We have Aaron’s teeth cleaned every two months.  Shelly should get a medal.  She is very patient with Aaron and knows just how to handle his desire to talk or to stretch or to push the instruments out of his mouth.  Look what she let Aaron hold at his last visit.

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This kept Aaron’s hand occupied and gave him something to think about other than what was going on inside his mouth.  Perfect!!

There was the girl at the theater snack counter this past Sunday.  I thought Aaron was right behind me as I bought our tickets, but I turned and he wasn’t there.  I went to one side of the snack area, but there was no Aaron.  I finally found him on the other side, and by this time he was not in a line but was right up at the counter where a young woman was waiting to take his order.  Aaron saw me and yelled, “MOM!!” as I hurried over to where he was.  The first thing I did was to ask the young woman if Aaron had pushed ahead in line and she assured me that he had not.  I knew instantly that she understood.  A mom just knows.  Relief washed over me as she asked Aaron what he wanted, looking him in the eye, and smiling at him with kindness and not with uncertainty.  She just had a wonderful way about her with Aaron, treating him with calmness and with great ease.  I wanted to quickly thank her specifically for her kindness to Aaron and maybe ask her about her background, but by then Aaron had moved on and was trying to stuff a huge wad of napkins in his pocket and locate a handful of toothpicks, so I had to run.  I’m sure she got that, too.

This encapsulates exactly what I’m trying to say:

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I just love it when somebody treats Aaron like he’s a somebody……because he certainly is a somebody.  He’s special in his own right, and not just a person with special needs.

It doesn’t take someone doing some huge thing for Aaron, like taking him on a two month vacation trip…….although if you want to do that, I might say yes.   No, just like my Aldi cart and the quarter, the kindnesses that mean the most in my everyday life and in Aaron’s everyday life are the “small” kindnesses.  These acts in their everyday hues are really enormous bursts of color to me and to Gary and to Aaron.

Each of us can do the same for everyone that we encounter.  The littlest gesture can lighten a load in others that we don’t even see or know about.  It’s never a small thing to be kind.  We have no idea of the lasting impact a word, an action, or a smile can have on those random people that come across our paths every day.

There’s another aspect to kindness that we have with Aaron as well.  It’s about our efforts to teach Aaron to be kind.  On some days he acts as if he’s never heard the word, but on other days he amazes us and others.  I’ll save that for the next blog.

Aaron does give me plenty of material to write about, after all!

All I Need to Know

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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 to 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.

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.

 

 

 

The Wonder of Me…..And Aaron…..And Lots of Things

I went to pick Aaron up at his day group on Thursday afternoon. I waited in the van for a couple minutes, then saw Barb coming toward me. I knew before I really knew that this probably wasn’t going to be good news. I was right. She told me that Aaron was inside after having a very rough afternoon and that he was refusing to come outside. I went in and we found Aaron laying on one of the couches, crying and very upset. After some time, and moving to a new couch where he laid down again, he told the story of how he had acted……which often starts with him thinking he’s teasing but turns ugly pretty quickly. One thing led to another and the situation became something it never needed to be.

How we wish that Aaron understood that his idea of teasing is often anything but. How we wish he could control himself when he is being redirected. All the talking and lectures and therapy in the world doesn’t seem to sink in. Maybe a little, but not as much as needed. He just doesn’t connect actions and repercussions like you and I do. Reading about the autistic brain……writing about the autistic brain…….saying that I understand the autistic brain as much as I can…….often doesn’t mean as much as it should when I’m staring at my belligerent son, hearing of his actions and trying to control my own embarrassment and anger.

Aaron is often immensely funny, but Aaron is also sometimes immensely frustrating. Thursday fell into the last category.

Aaron is seeing a family therapist every two weeks. This is a new thing for him. I had high hopes that as much as he loves to talk, he would really take to this and love talking to her. It hasn’t quite worked out that way. If she just let him talk about his things, like aliens and movies and games and eating out, then he would probably look forward to it. But he realizes that she wants to talk about his issues……how he’s doing at Paradigm and at home with relationships and anger and attitudes. To Aaron, this is uncomfortable and a waste of time, so he hasn’t been enjoying their sessions like I had hoped.

This past Tuesday she gave him a paper on which she had drawn a large stoplight. The green light means that he is doing good, so keep going. The yellow light means that he is starting to feel some frustration, so he needs to be cautious. The red light means that he is having a meltdown full of anger. At the end of the day, he is to mark what kind of day he has had…..green, yellow, or red.

Aaron didn’t want to take the paper home from her office. Then he told me several times that he thought the paper was stupid. I left it alone on Tuesday night, but on Wednesday night I told him before bed that it was time to mark his stop light with what kind of day he had. I felt like Wednesday had been a green day, so I thought he would be happy to mark the green light. But when I told him to get his paper and mark it, he crossed his arms and told me that he had hidden the paper.

Oh boy.

After some talking, he finally got down on his hands and knees, and pulled the paper out from under his bed. He rolled his eyes as he put a mark on the green light, the mark I thought would make him happy. Then he picked up the paper and as we stood there talking before saying good night, he crumpled that paper some in his hand. He was simmering, I knew it.

So after his meltdown Thursday at Paradigm, and a rather rough evening at home during Skip-Bo as I tried to talk to him, he went upstairs at my direction and brought down the stop light paper so that he could mark it. I knew that he needed to put a mark on the red light, and he knew that, too.

He came down to the kitchen table with his paper, and this was what he laid on the table.

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Well, so much for that idea. How many times I say that when we try something new with Aaron!

So often it’s back to square one with Aaron. We rarely feel like we pass go and collect our $200.00. I know there are times in his life when he needs to pull back and reboot, so on Friday I let him stay at home. He went grocery shopping with me, helping me at the store and helping me carry in the groceries at home. We went to see Jungle Book, run more errands, and get him a sub for supper. We watched a little TV in the evening. It was a pleasant, fun day for both of us.

Aaron found an Elvis CD that he wanted when we were shopping together at the first of the week. He’s been completely fascinated with the songs and with Elvis all week as we’ve listened to the CD while driving. He’s been hilarious with some of the things that he has said about Elvis, like how his voice is “jiggly” and his dancing is “rowdy.”

So on Thursday, meltdown day, Aaron turned on the Elvis CD in the van. The second song that played just left me pretty stunned and with a huge lump in my throat. “The Wonder of You.” Look at the lyrics for the first part of this song:

When no one else can understand me.

              When everything I do is wrong.

              You give me hope and consolation,

              You give me strength to carry on.

 

              And you’re always there to lend a hand

              In everything I do.

              That’s the wonder, the wonder of you.

 

Aaron has decided that he loves this song. It’s uncanny. This song that speaks volumes to me about what kind of mother I need to be with Aaron has become a very special song to him as well. It’s not for the reasons that it’s meaningful to me, either, because I’ve had him tell me why he likes it so much. But he’s played it over and over since Thursday. We even listened to it with Gary at supper last night.

I really do want to be this kind of mother in Aaron’s life. Sometimes he’s certainly hard to understand and he does a lot wrong, but I pray that I will give him hope and consolation, strength and a helping hand.

Honestly, many times, I don’t feel like I’m a wonder. I feel more like I’m left wondering…..wondering what to do, wondering what’s going on, wondering how I can stay calm…..

I could go on for a long time about some of the ways that I wonder.

But Aaron needs me to be there for him despite the wondering and the frustrations, the tiredness and the seeming dead ends that we end up taking. He’s taking a nap right now and just had a seizure. He needs me physically, too.

But he needs me the most when, like the first part of the song says, no one else understands him and everything he does is wrong. I know he’s frustrated by those times more than we are.

All moms can relate to what I am saying, and especially moms of special needs kids and adults understand it all too well.

Aaron will probably never look at me and say, “Wow, Mom! You’ve meant so much to me. You’re a wonder!”

Just reading that makes me laugh. I’d faint if he said that and probably get hurt, so it’s just as well that he doesn’t say it, right?

But I will keep striving to BE that in Aaron’s life…..pick him up, understand as best I can, hold his hand (figuratively speaking, because he doesn’t hold hands much ), and give him strength and consolation.

But trust me, I know me, and I know that at the end of some of our days I’ll still be saying, “Yes, I’m a wonder! I’m a-wondering how on earth we both made it to the end of this day alive and in one piece!!”

And tomorrow’s a new day!