Autism Awareness at Our House

It was 14 years ago that I sat in the exam room of a pediatric neurologist in Tucson, Arizona.  I tried to talk quickly to him about the reason that I was there, because the reason that I was there was sitting by himself out in the waiting room.  There sat Aaron………..or at least I hoped he was sitting and not roaming……….all by himself while I tried to convey to this new doctor our concerns for Aaron.  There were things that I didn’t want Aaron to hear coming from his mother’s lips.  I didn’t mind talking in his presence about the seizures that he had battled for 7 years.  Seizures were out of his control……..out of our control………no matter what drugs he was currently taking.  Seizures were a medical issue.  But his behaviors that were increasingly disruptive and odd…….his social awkwardness and lack of friends during this pivotal time of puberty……….his rages and his strange obsessions………..these were issues that I did not want to discuss in his presence.  My mother’s heart hurt for him and I refused for my son to hear me talk about him in this way.

Gary and I had taken Aaron to many military doctors since his first seizure.  His care was good, we thought.  But as he grew, he was more and more different.  We blamed his differences on the seizures or the seizure drugs, but more and more we weren’t so sure.  Finally, stationed in southeast Arizona at Fort Huachuca, we had reached the end of our rope.  Gary was having to drive five hours one way to take Aaron to the closest military pediatric neurologist in El Paso, Texas.  Aaron’s seizures were worsening, and his strange behaviors were increasingly alarming to us.  We requested to be allowed to see a civilian peds neurologist and the military approved.
So there I sat in Dr. Gray’s exam room in Tucson, telling this new doctor about my unusual son and sharing my concerns.  As we talked, the door opened and an assistant stuck her head in the room.  “Uh,” she said, “can Aaron come in with you now?  He’s out in the waiting room dismantling the artificial tree in the corner.”  I was not at all surprised, although embarrassed.  That would be exactly what he would be doing and I knew it.  So Aaron was nicely ushered into the room with me and Dr. Gray, where he sat on the exam table and let this new doctor begin his check-up.  Within a few minutes, Dr. Gray turned to me and said, “I know exactly what this is.  Aaron has Asperger’s Syndrome!”  This nice doctor may as well have been speaking Russian to me.  I had no idea what this strange syndrome was.  When I asked him to explain, he did just that in three words that changed our lives……..”Aaron has autism.”  I was stunned, and remember very little of the rest of our visit……..except I do distinctly remember standing in the hall with Dr. Gray as he had Aaron walk down the hall.  The doctor pointed out that even Aaron’s unusual gait confirmed this diagnosis.

Later that night, after all the kids were in bed, Gary and I talked at length about this new diagnosis.  And I cried, just as I cried when Aaron was diagnosed in Germany with Epilepsy.  One hard, gut-wrenching cry……….and then I dried my eyes and smiled in front of Aaron and off we marched into this unknown future.  But I wasn’t alone.  I had Gary by my side and we marched and we learned together.  And most importantly, we had God by both our sides.  My special verses in Psalm 18:28-29 became even more relevant to me:  “For it is You Who light my lamp; the Lord my God lightens my darkness.  For by You I can run against a troop, and by my God I can leap over a wall.”  And God has repeatedly done just that.  He has lightened many a dark moment, and He has given us giant leaps over lots of walls that we thought were impossible to scale. 

It’s not been easy over the years to live with Aaron.  As we have tried to teach Aaron how to adapt some of his thinking and his behaviors to our world, it is most often the rest of us that have found ourselves adjusting to Aaron’s world.  It seems that no matter what we say or teach or emulate, there are some of Aaron’s traits and behaviors that will be a part of him forever.  Some of his behaviors are very frustrating………some are very embarrassing……..and some are very funny.  Over the years, we have relaxed with Aaron and have learned to smile and to laugh at many of the things he says and does.

This month of April is Autism Awareness Month.  Well, there are plenty of times that Aaron raises our autism awareness, whether we want it raised or not!  For instance, on any given trip to Wal-Mart, you will know that you are with Aaron for these reasons:

1.  As you walk across the crosswalk to the Wal-Mart doors, Aaron just might hold both his arms out as he stops in the middle of the crosswalk……….proudly thinking that he is stopping the traffic just like a policeman does…….with his head up high and a very serious look on his face.

2.  Upon entering the store, Aaron looks at the security camera and holds up both hands as he gives the peace sign, grinning broadly.

3.  If you hear some of the cereal boxes in the cool display at the end of the aisle start hitting the floor, you’re not one bit surprised to turn and see Aaron standing there, saying, “Mom!  Look!  Chocolate cheerios!!”………….as he holds up one box that didn’t fall and is oblivious to the ones laying on the floor all around him.

4.  If you hear a loud fox whistle, you know that Aaron is near………….unaware of the girls who turn and stare at him.  He just thinks the fox whistle is cool.

5.  If you hear a very loud clap, you know that Aaron is in the store…………again not one bit concerned about the number of people who are eying him suspiciously.

6.  If you walk past little sexy nighties  that are displayed for Valentine’s Day right beside a busy center aisle, and you hear someone say, “Mom!”………….and you turn to find Aaron holding up the tiger print nightie while he yells, “You need this!”…………you know that you are with Aaron and you know that you are wishing for a hole to swallow you at that moment. 

7.  If you send Aaron to get a package of the rolls that he likes, and you see him walking toward you with his hands full of packages of rolls, you just laugh and realize once again that Aaron will take full advantage of every opportunity given to him.

8.  If you hear someone yell, “Mom!”  and you are anywhere near the produce department, you know that you will turn to see him holding up an eggplant or maybe an artichoke or a coconut…….and wanting you to buy it. 

I have never liked drawing attention to myself in public, so living with Aaron has been a lesson in remaining calm and trying not to be embarrassed……..and remembering to coach Aaron as we enter public places about not whistling or clapping or making that farting noise with his mouth.  And not striking up conversations with random people, for Aaron does love to talk to anyone on whom he spies ears on the sides of their head.
Aaron definitely does not have non-verbal autism.  Talk, talk, talk, talk, talk…………on some days, especially when he is at home all day, it can get very tiring.  If friends come over, we eventually have to almost get rude in order to make Aaron hush and let the rest of us talk.  However, in the midst of all that talking, he does make some hilarious comments.  His way of expressing the world that he observes can be very amazing, really.  For instance, here a few recent comments from Aaron:

1.  “Isn’t it a legend that Huskies were used for dashing?”

2.  “I heard on Forensic Files that some people make artificial money!”

3.  “Mom!  I looked up the Archie’s on the internet!  Can I show you someday today?”

4.  Speaking of jello, he said, “Do you like that wiggly pudding?  It’s bouncy!”

5.  Realizing that he had numbers on the back of his shirt – “I didn’t know I had something behind me on my back while I was doing coupons.”

6.  Calling me a funny name one day – “Mom, I’m not trying to name call you.  I’m trying to do a teasing.”

7.  Noticing a hole in Krysten’s pants – “Mom, look!  Krysten’s pants are broken!”

I could go on and on about the things that Aaron says.  And oh, the things that Aaron does……….day in and day out, without fail.

1.  He loves to wear his watch halfway up his arm.  One day recently he said, “Mom, I don’t wear my watch up high anymore.  You know why?  It was trapping the blood!”  But he does still wear it up high, trapped blood or not.

2.  He relaxes by sitting in the mulch, breaking it into tiny pieces and watching them fall into the trash can that is just for that purpose.

3.  He will always get multiple pieces of silverware when he eats, using only one piece for each food item.  Even when eating pizza, for instance, he will have his pieces of silverware near his plate.  And a straw for his drink – always!

4.  He takes delight in the simplest things, like a special rock that he found one day. 

5.  He loves our Great Dane, Jackson, and will pet him……….and try to give him Skittles or peanuts or

Chex Mix  or whatever else he may be eating at any given moment.

6.  He loves Wheel of Fortune, and will watch it now every night………clapping VERY loudly and yelling VERY loudly…….and working hard to figure out every comment and facial expression of the hosts and contestants…….and still wondering if Vanna and Pat are married because they are always on beaches together!

7.  He loves to go out and take a walk with his dad……….talking all the while, of course.
8.  He wants to play Skip-Bo every night………..although we don’t play EVERY night, much to his dismay.

These are just partial lists of what Aaron says and does.  It’s impossible, really, to fully explain Aaron.  He is very complex while also being very predictable at times.  He is a unique young man and he has shown us a different world than I would ever have imagined.  Would I have chosen this path years ago if God had given me a choice?  I sometimes doubt that I would have, yet I think of all that I would have missed and realize that this path truly has been amazing. 

Verse 30 of Psalm 18 says:  “This God – His way is perfect…..”   Yes, His way has been perfect for us.  Easy?  No.  But somehow perfect – yes. 

And this Aaron – he is so special and we do love him very much.  

Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

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