A Little Understanding, Please

I shouldn’t have let Aaron go to his day group on Monday.  His mood was pretty foul at home, but he wanted to go and so I let him.  He only wanted to go because he knows that having a special meal on Friday night depends on him going to Paradigm every day.  Funny how these rewards can come back to bite me.  He was pleasant on the drive across town.  But the way he slammed the van door when he got out was a sign to me that it might be a rough day.  And it was.

I knew when I got the phone call from Paradigm that afternoon, and Barb said a quick hello before putting her phone on speaker.  That’s usually what she does when she wants Aaron to also talk, and wants him to hear me.  Aaron was yelling, very upset and belligerent.  It had been a no good, very bad day…..and was soon to get even worse.  At this point, Aaron didn’t want to ride home with his driver.  Last August, we hired an agency to bring Aaron home from Paradigm in the afternoons.  Aaron likes going from point A to point B, with no stops in between.  But the route includes other clients that go home before him, so this had become a trigger for Aaron.  On his no good, very bad day….Monday….he did NOT want to ride anywhere but home. 

Once Aaron is upset…really upset….he’s like a volcano that must erupt until the flow of anger is over.  His autism prevents him from calming easily.  It prevents him from listening to reason or being reasonable.  He has very few filters, so words fly when he erupts, and some are inappropriate.  He decided on Monday to go ahead and ride home with the driver, knowing that he really had no other choice.  But he promptly told her to shut up when he got in the car, and he refused to put on his seat belt.  The whole way.  Not good….not good at all.

Shortly after he got home, upset still but calming some, my phone rang.  It was the agency that provides his rides home, telling me that they were very sorry but that Aaron would no longer be allowed to ride with them.  I understood, but I tried to do some explaining and then I asked for a second chance….but two days later was told there was no second chance.  Good luck with finding a new driver….it’s been nice working with you…. 

Back to Monday.  After the phone call, Aaron looked stricken.  He decided to try to rectify things by offering to help cut the ends off the asparagus I was fixing for supper.  I let him.  And during supper, out of the blue, he asked if he could write a get well note to our friend, Atha.  She’s been very sick and is in a rehab center.  I got him a note card and he wrote her his succinct get well wishes.  They were words of gold to me that night.  I think they will be for Atha as well.

Later, though, as Gary and I tried to absorb the events of Aaron’s day – especially the loss of his ride home, which is huge – things went downhill fast.  Aaron ended up realizing that we were trying to bring up the recurring subject of him moving out one day….living in a residential setting. 

“You could live with some friends, Aaron!” we said.

“I DON’T WANT TO LIVE WITH FRIENDS!!” he yelled.

And he stormed up the stairs as he told us how much he hated us.

But within seconds he was stomping back down the stairs, sitting in the recliner and rocking furiously.

“You just want me to leave!” he said, with tears coming down his face.

We tried to explain….tried once again to reason with him.  It doesn’t work.

“Aaron, Rosa lives with her friends and comes home on weekends.  And Shauna, and Natalie….”we told him.

“I DON’T CARE ABOUT ROSA OR SHAUNA OR NATALIE!!” he again yelled…..and again stormed up the stairs.

This went on for a long time, until finally he….and we….were spent and there was nothing else to say.

Tuesday was a better day at his day group, for the most part.  I drove to Paradigm in the afternoon to pick him up, fighting my frustration.  It didn’t help me at all to see and hear Aaron being rude to another client.  I was distant and silent as we started the drive home, finally responding some to Aaron but being rather cold.  That wasn’t a good choice for me to make.

“Mom!” Aaron said.  “You’re ‘iknorin’ me!”

The volcano erupted once again when we got home.  Aaron kept saying over and over that I had ‘iknored’ him.  He was crying hard, and my heart was breaking.  I tried to explain, but to no avail.  He pulled a large picture off his wall, taking some paint and dry wall with it.  He ripped a dollar bill into pieces.  He very loudly slammed his door several times.  And he told me that he was going to put a sticky note on his door that said, “Mom is an idiot!!” 

I sat on his bed.  He had his headphones on as he looked at a video.  I told him again that I was sorry, and I asked him to forgive me.  All he could do was cry and say, “You were ‘iknorin’ me!!”

So I said the words that always reach his heart.

“Aaron?  Would you like to go get a Slushie from Sonic?”

Without even a pause he quickly said yes, and so we got in the van and got his slushie.  I parked in the Dillon’s parking lot, away from others, and he slurped while I talked.  He calmed and I tried to explain things, knowing full well that Aaron doesn’t relate to most of our explaining sessions.  Finally I was done.  There was quietness before Aaron spoke again.

“Mom?  There’s a reason why you shouldn’t watch Alien Vs. Predator 2.”

He didn’t notice my deep sigh or the shaking of my head.

Oh, if only Aaron could convey to us his hurt and his anger with reasoning words instead of hard and hurtful words!  Or curse words.  Or just totally ignoring the situation and talking about aliens. 

Aaron often doesn’t even know why he’s frustrated.  He just is on some days.  As he escalates, so do others around him, and that only further compounds the issues.  I reacted with ‘iknorin’ him on some of the drive home, which I really shouldn’t have done, so he reacted.  Did he ever!  But he was afraid that I didn’t love him anymore.  He’s terrified of losing my love, but he can’t verbalize that.  So he reacts with anything that comes to his mind that demonstrates his deep fear and hurt.  That usually means that he breaks something, like his watch or his glasses or his picture on the wall or the dollar bill.

Why am I telling you all of this ugliness?

I’m sitting here listening to Aaron’s monitor….listening for another seizure which may come.  He had a long seizure at 5:30 this morning, and only one seizure means that usually more will follow during the day.  He’s napping in his room and I’m on alert as I go about my day. 

I tell you the ugliness of his behaviors because really, those behaviors hold him down more in life than do his seizures.  It’s a raw, hard reality for many parents of special needs children.  Those sudden, awful, interrupting, exhausting behaviors.

I can explain seizures.  Other parents can explain various visible special needs of their children, or even special needs not seen but understood.    But behaviors?  So frustrating….so embarrassing…..so condemning for both child and parent.

But we need those behaviors to be understood as well.  And we as parents need to always work to understand them, too, especially in the heat of the moment. 

I have friends who would say to others, “Please, please understand my loud and uncooperative and bizarre and hateful child.  Please just try to understand, and not judge and not condemn and try to give advice or lectures.  Just understand, a little even.  Sometimes that’s all we can manage, too.  A little.”

And love a lot.

Tuesday night, as Gary was going to bed, he said, “Hey Aaron.  Come here.” 

I thought that Gary had something cool to show Aaron, so I looked around the corner of the kitchen to see what it was.

And as Aaron walked toward his dad, Gary held his arm out and gave Aaron a hug.  Aaron even responded!

I blinked back the tears.  Sometimes it’s hard to love Aaron, honestly, but we must….and we do.  I was very thankful for that sweet picture that ended our second no good, very bad day with Aaron.

One more thing.  I went inside Paradigm yesterday when I went to pick up Aaron.  What a lifter-upper that was!!  Those wonderful clients, with so many needs, have so much love to give….even on or after the bad days.  Love for me and more importantly, love for Aaron.  We could hardly leave for all the hugs and talking and smiling. 

Every day is a new day, as Barb says.  A fresh new start.

“This is the day which the Lord has made.  I will rejoice and be glad in it!” 

But sometimes I AM glad when they’re over.  J 

Playing Skip-Bo at the end of one of those rough days

Getting Aaron

I ran into Great Clips this morning, taking Aaron for another haircut, shave, and beard trim, and who greeted us but Erin!  Erin has worked there for quite awhile.  Erin loves Aaron, if you follow me.  She’s a mom, and just a very sweet person who genuinely loves seeing our Aaron.  So it’s always nice when Erin cuts Aaron’s hair! 

Erin is one of these people who just gets Aaron.  She was genuinely happy to see Aaron as we walked through the door.  She talks to him while she cuts his hair, asking him questions and interacting so well with him.  I just love having people like that in Aaron’s life.

 

I can tell very quickly if someone gets Aaron or not.  You don’t have to totally understand Aaron to get him.  Is this making sense?  There are just some people who from the first moment they encounter Aaron, are relaxed and accepting of him.  And there are others who look at Aaron like he has an alien head or something…..although Aaron would think that having an alien head is pretty cool. 

For instance, Friday evening Aaron and I went to Little Caesar’s for pizza.  The line at the take-out window was long, so I decided that Aaron and I would go inside to grab our pizzas.  As I parked, I gave Aaron the usual directions…..wait for me, don’t barge in the door, if there’s a line then don’t push ahead, please don’t clap, and please talk SOFTLY!!  Of course, I was trailing behind him as I finished my instructions and he was barging in the door.  Oh well.

Thankfully, there was no line, so Aaron had free rein to walk up to the counter, lean way over and loudly say, “Can I have some breadsticks??!!”  I was tugging Aaron back while reminding him to talk softly and also reminding him that I already told him he could have breadsticks…..when I turned and saw the cashier’s face.  She was staring a hole through Aaron while she wore totally no expression on her face.  There was no emotion at all from her.  She looked at Aaron like he was perhaps an alien, but a very boring alien.  Like she was thinking, “Who are you and why are you in my store?”   

Aaron was very excited and happy, totally oblivious to this girl’s cold stare.  He continued to interrupt as he loudly asked if we could get TWO pizzas as well as breadsticks.  Her eyes went from me back to Aaron, with her impersonal cold stare once again.  At times like that, I’m very thankful that Aaron doesn’t get social cues.  This girl didn’t get Aaron, but Aaron didn’t get that she didn’t get him, so in that respect all was well. 

But all was not well in my spirit.  I wanted to give her nose a little pinch and then deliver a lecture, but of course I didn’t.  And I know that maybe she was having a bad day.  Yet really, deep down, I just know that some people get Aaron and some people don’t.

Tuesday for lunch, Aaron and I met his case manager at Applebee’s for his yearly PCSP meeting.  Barb, from Paradigm, was there as well.  Aaron is as comfortable with Barb as he is with me, so she understood Aaron’s whacks on her arm, his too tight squeeze of her hand, and how he helped himself to some of the chicken on her salad.  It was our server, though, whom I especially noticed.  She made eye contact with Aaron, smiled at him, listened to him, and was genuinely relaxed with him.  I even looked at Barb and whispered, “She gets Aaron.”  And Barb knew just what I meant. 

When someone understands Aaron, it’s as obvious as the nose on their face….like that little girl’s nose that I wanted to pinch.  J  But it’s very obvious to me when a person understands Aaron, and even accepts him just as he is.  Sometimes being in public with Aaron is embarrassing, honestly.  He’s large, and loud, and totally blind to the effect he has on others by being “out there” with some of his behaviors.  He might point at someone because of their hair or whatever.  He might turn around in the restaurant booth to see what the people behind him are eating or saying.  He might stop to stare at their plates as we walk out of the restaurant.  And if he goes to the bathroom by himself during our meal, it’s very interesting to watch people’s faces as he walks by, his head high and arms swinging, often making funny noises with his mouth.

So when someone gets Aaron, I find myself relaxing some.  It’s as if I don’t feel the need to explain, which I usually don’t do anyway.  I shouldn’t have to explain Aaron.  He is who he is, in all his boldness and uniqueness.  But I’m human and I feel my face getting red when Aaron does something a little crazy that draws attention to us.  It’s nice to see others understand him even if they don’t really understand…..to accept him…..and especially to enjoy him. 

Having Aaron in my life has taught me to try hard to show understanding to other families I see who are probably uncomfortable in public.  I remember when Gary and I ate dinner at a local restaurant with some friends.  Our table was near a mom and dad who were eating dinner with their special needs son.  I noticed their son immediately.  He was stimming in his unique way, and I just knew what they were feeling.  I could see it on their faces, especially the dad.  So I finally made eye contact with the mother, and I smiled at her.  I pointed to myself and shook my head yes.  She was a little confused, so I just stood up and walked over to their table.  I spoke to her and her husband, and told them who I was…..and that I had a son much like their wonderful son.  They both visibly softened and relaxed.  They were so happy that I understood and that I spoke to their adult son, and that I got it.  That’s what meant the most to them….the fact that I got their son. 

So when you’re out and about, and you see an Aaron…..or most likely, when you HEAR an Aaron…..just smile at the parents with genuine love.  Even when their Aaron might pull one of the lower boxes of cereal out of the huge cereal box display….and mom stands there with fallen cereal boxes all over the aisle….smile and maybe even offer to help pick them up.  Yes, that happened to me.  And the help of a sweet teenaged boy was such a blessing that day!

There are special people all around us who need us to get them.  There are families of special ones who will feel a huge weight lifted off their hearts if you are that person in their lives. 

I get it!  You can, too.

Embarrassments

We all know the famous Browning poem, “How Do I Love Thee?”  Well, I have some thoughts about Aaron, but the title would be “How Do I Embarrass Thee?” As in, how does Aaron embarrass me?  Being a southern mama, I would add, “Bless his heart.”  And you can take that any way you want.  We southern girls certainly know how to do that. 

            You know I love Aaron with all of my heart.

            You know I love Aaron, every part.

            But oh, how embarrassing he can be.

            So today I have a story of three.

OK, I’m no Browning……bless my heart. 

Anyway, today was dental cleaning day for Aaron, so we took off this morning for our beautiful drive north through the country.  We drove up 135^th street to 53^rd, for you local folk, as we headed to the town of Maize and to our dentist’s office there.  Aaron was enjoying his day off as we drove by cows and horses and goats and one field of critters that I couldn’t identify.  He was really loving the oldies CD that we listened to, and hearing the fact that these were songs from my high school days. 

Aaron didn’t have time to enjoy the waiting room where he likes to talk to Lee, the receptionist.  He was immediately called back for his cleaning.  I had urged him to be patient and polite, character traits that run short for him sometimes in the dentist’s chair.  And when he walked out about 40 minutes later, I heard him before I saw him.

“Mom!” he said.  I could tell just from the sound of his voice that he was exasperated.  “Let’s go now!” he demanded as he walked into the waiting room.  I could tell from the wild look in his eyes that he was upset.  Oh dear.  So as I checked out and made his new appointment, the hygienist was able to whisper that he was more upset than usual today.  He even told her to shut up at one point…..or maybe more than one point.  He was just rude and belligerent to her.  He doesn’t like the cleanings…..he doesn’t like the feel of it and the time it takes……and he doesn’t like being told over and over to hold his mouth open and to loosen his steel-like lower lip.  And of all things, we go every two months to the dentist for cleanings because of how Aaron doesn’t brush well enough. 

I was embarrassed.  I know the staff there understands as best they can, but it’s hard to be the mom at that moment….no matter how old my “child” is.  I know that I will always be dealing with these red-faced moments, and I know there is a legitimate reason why, but it’s still just….embarrassing.  As Aaron and I drove away, I gave him a lecture.  He doesn’t do lectures, I know, but I still try.  I filled my lecture with talk and examples and reasonable comments to which I felt he could relate.  I was still somewhat lecturing as we walked into Menards for a quick stop.  As we walked up the long middle aisle, Aaron was lagging behind.  Finally he said, “Mom!  You keep talking about mad things!”

So I knew it was time to stop.  Enough talking about mad things.  What’s done was done, and I hoped that some of what happened and what I said had made an impression on Aaron.  Yet Aaron lives in the moment, so permanent change is doubtful.  The next moment in the dentist’s chair may still cause frustration for Aaron.   Anyway, the dentist was my first story of embarrassment today.

Number two – Pizza Hut.  Aaron and I love the Pizza Hut not far from the dentist’s office.  It’s fairly new and it has a nice lunch buffet.  Aaron loves anywhere that has an all-you-can-eat buffet, because all-you-can-eat is a meal made in heaven for Aaron.  He does get my money’s worth!  But buffets, where Aaron gets up and down, and is in front of people as he does so, can sometimes max out my embarrassment quota.  I can understand when he’s awkward and spills the salad bar cheese on the counter.  I often go with him in order to help him hold his plate straight and steady.  Pizza sliding off his plate onto the floor has taught me that lesson.  I can understand and deal with that, too.

 

But good old Aaron is so happy and relaxed because of the all-you-can eat reality that he will sometimes break out in song.  He did that today as he went up to the buffet for what I told him would be his last time.  He was remembering the last song we heard on the oldies CD as we parked outside.  I had stayed in our booth near the buffet and just watched him as he put two more pieces of pizza on his plate, and as many breadsticks as would fit.  Then suddenly he broke out into, “Oh, there’s magic….”  Several times, as I watched.  And then some passing gas noises.  I just sat there and savored the moment.  The table of construction guys must have, as well.  I didn’t look.  

Aaron sat down and started talking, loudly, so I did the “Ssshhhh” thing for the umpteenth time.  “It’s always, sshhhh!” he complained to me.  And I told him it’s because he’s always NOT “ssshhhhing” when he should be “ssshhhhing!”  I looked down for a few seconds and looked up to find him with both arms straight up in the air, flashing the peace sign with a look of purpose on his face. 

“Aaron, arms down,” I said with resignation.  At least he was quiet.  Peace.  Until we were leaving.  I had paid the bill, and as I turned to leave, Aaron turned back to the buffet…..where he reached in and grabbed one more bread stick with his FINGERS!!!!  He had me talking about mad things again as I hurried him out the door. 

Number three place of embarrassment – Great Clips, of course.  A new girl cut his hair, and today Aaron talked non-stop to her.  He told her about his scraped arm, his day group, robots, aliens, movies, and what he had done that morning.  “Going to the dentist is not my thing!” he informed her.  And of course, he had to tell her about his room being painted. 

“Do you know what happened on Saturday?” he asked her, sort of breathlessly, as if it was a major and unusual event.  She told him she didn’t know what happened on Saturday.

“This man came to my house,” he continued.  “And he painted my whole wall!” he finished.  Like he would paint only part of it?  I smiled and the new hairdresser smiled, and everyone there was hearing all of this……aliens, robots, disliked dentist visits, and painted walls.  All of it, clearly heard throughout the shop. 

Including his parting words to the nice hairdresser as we stood at the counter to pay.  “Do you like oldies?” he asked her.  “My mom and I are listening to oldies.  Mom said those were songs she knew in high school.  That’s when Mom was young.  She USED to be young.” 

The girl politely smiled, not sure of what to say with Aaron’s “USED to be young” mom standing right there.  Aaron continued.  “Yeah, mom knows those songs.  She USED to be young.”  So then the very composed, somber older lady in the waiting area burst out laughing.  So did I.  May as well.  And as I herded Aaron toward the door, I told this woman that at least Aaron wasn’t discussing my weight.  He’s been known to do that, too. 

You know, there is good embarrassment and there is bad embarrassment.  Aaron’s behaviors, such as he showed to his hygienist today, are a bad embarrassment that makes me feel frustrated and sometimes humiliated.  Aaron’s good embarrassment when he’s singing at the buffet, flashing the peace sign for all to see, or talking about his mom who USED to be young, can still redden my face.  But it’s all fun in the way that Aaron makes it funny.  He makes us laugh, even as we may try to hide.  I can let it ruin my day because of the embarrassment, or I can let it make my day.  I can choose to enjoy Aaron, or I can choose to always be frustrated. 

Sometimes Aaron needs for me to talk about mad things as I try to help him grow and be appropriate.  But many times, I just need to relish the unique person that Aaron is and not let my embarrassment let me miss these special moments with the joy that they can hold. 

It’s magic, if I allow it to be. 

Reminds me of a song I knew when I USED to be young.