Month: January 2019

My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening.  I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures.  I would rather have heard a seizure, honestly. 

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels.  I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook.  I love sharing the very unique and humorous ways that Aaron speaks.  His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word. 

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00.  He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set.  But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer.  When Aaron plays a game like this, he has a very hard time stopping it and saving it.  He must reach a certain point in the game, and in his mind, before he will turn it off.  For over an hour he kept repeating the same phrase, loudly: “I’m coming!!”  Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time.  We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out. 

“Can we watch Bones, Mom?!!  Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that.  He was in such a tizzy.  And he could tell that I was tired and didn’t want to stay up late.  His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility. 

Mom was mean.  Mom was dumb.  Mom didn’t care.  On and on.

He turned his DVD on.  Turned it off.  More yelling.  Turned it on.  Turned it off.  Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry.  I wasn’t crying, but he didn’t believe me, so he stared and stared at me.  And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much.  He looked so funny, really, that in my tiredness I did the forbidden…I laughed.  Aaron thought I was laughing AT him personally.  He erupted and we traveled even further downhill than we already were.

It was a wild hour after that.  He was in and out of his bedroom…in and out of bed…in and out of our bedroom.  He was calmer talking to Gary…angry talking to me.   Say goodnight, Mom…no, don’t say goodnight, Mom.  I don’t want your goodnight kiss…OK, I do want your kiss. 

He calmed when Gary came upstairs.  He let me hug and kiss him goodnight.  And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated. 

My calmness during the whole episode only seemed to fuel his flames.  The realistic, upset words I did say seemed to appeal to him more than soft kindness.  So strange how that works.  So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors.  Seizures are scary and sad.  Behaviors are exhausting and often hurtful.  People feel sorry for seizures.  But behaviors…what do you do with behaviors? 

And behaviors leave me feeling like a very unfit special needs mother.  I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me.  Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort.  But my tension was strong, too, and sleep wouldn’t come.  My tossing and turning was keeping Gary awake, too, I knew.  I would relax and then thoughts would wash over me.  I would relax again and Aaron would stir, seeming to be restless as well. 

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately.  How could I have handled it differently?  What should I have said?  What should I have NOT said?  Guilt for not liking Aaron when he’s out of control.  On and on.

What I do know is that God is always there for me.  He heard me last night, there in the dark, praying and confessing and praising.  He knows my form.  He knows that I am human and that I am weak and that I need Him, totally.  He knows that I get frustrated and tired, and that I do love Aaron with all my heart.  And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy.  Some days…and happenings…make it harder than others. 

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace. 

That’s the kind of parent I need to be with Aaron.  Forgiving him…understanding but not condoning…and opening my heart and my arms with love. 

I have no superior wisdom or strength.  I mess up…I give up…I look up.  And there I find God, always understanding and giving me grace. 

God’s a good Father to me, his special needs daughter.  I need all He gives to me and does for me, for I have nothing of my own.  He certainly didn’t choose me for this parenting role because of anything I have to bring to the table.  He chose me because…well, I don’t really know.  But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest.  Which is often.

God loves me, His special needs daughter. 

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care. 

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Aaron’s Bowl of Normal

Walking through the family room the other day, I noticed something red sitting on the end table beside Aaron’s favorite chair.  I knew he had left his bowl of Hot Tamales on the table, but there was something else.  I stopped to look, and this is what I saw.

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Aaron had set aside these two Hot Tamales.  This is nothing new, so I knew exactly what it meant.  It meant that Aaron realized these two Hot Tamales were a different shape and size than his normal Hot Tamales.  To Aaron, they don’t fit into the bowl of regular candy.  They are not the norm.  They must be separated from the usual candy, sitting there until all his candy is finished, and then thrown away.  He will not eat them.  They are unacceptable to him. 

Our Christmas holiday is still a warm memory to me.  However, not every memory with Aaron is warm and fuzzy.  Those unusual Hot Tamales help explain our family dynamic perfectly.

Aaron both loves, and somewhat dreads, our Christmas celebration.  He loves the anticipation of opening his gifts.  He looks forward to time off from his day group…time to be at home relaxing and filling his days with whatever he wants.  He likes seeing what food I am making, hoping that some of his favorites are in the mix. 

However, Aaron’s autistic mind is also very aware that his structured schedule is about to change.  He knows that he will soon need to share his ordered world with Andrea and Kyle…with their three dogs…and with Andrew.  He even must share his bathroom, for crying out loud!  In his mind, he is already setting aside some of these daily issues much like he does his unacceptable Hot Tamales.  They are not the norm, so they are cast off mentally as being unpleasing…yet in this case, necessary.

Aaron in many ways looks forward to our family being together for Christmas, just as he looks forward to eating his candy that is poured into one of his ever-present bowls.  But soon comes along those pesky interruptions into his ordered life…interruptions that are very difficult for him to sort and to deal with properly.

Christmas Eve is most often the time for what Andrew calls “Aaron’s Annual Christmas Meltdown.”  We say this with a smile when Aaron doesn’t hear us, but we also say it with some dread for what might come. 

Two of our best Christmas traditions occur on Christmas Eve.  My favorite is the Christmas Eve service at our church.  Each year we ask Aaron to come, and each year he turns down our offer.  The large crowds…all the talking with strange people…some of the louder music…and having to sit quietly for such a long time…are all very stressful to Aaron.  We understand this, and we don’t push the issue.  We know better.  But each year I’m sad that our picture in front of one of the beautiful Christmas trees does not include our full family.

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When we get home from the Christmas Eve service, our other fun Christmas tradition takes place.  Christmas Bingo!!  Otherwise known as the usual cause for “Aaron’s Annual Christmas Meltdown.”  Our Christmas Bingo is fun and loud and unpredictable.  Aaron greatly dislikes loud, unpredictable fun…which to him is NOT fun!  This is why Aaron shuns parties of any kind.  He says that people act weird at parties.  Never mind that on any given day one may hear Aaron clapping or saying outlandish things as he watches a show or scratching himself openly in Wal-Mart.  Aaron sees his actions as totally fine, but when Gary acts goofy as he announces each Bingo card, Aaron’s frustrations grow and grow.  Add to that our laughter and joking, winning or NOT winning each round, prizes that disappoint…well, Aaron’s bowl of normal is quickly being emptied and he is usually simmering as the game progresses.

This year, Aaron joined us after we had played a couple rounds.  He hovered near the table, observing us and seeming to need time to gather his courage to sit down at the table.  Aaron usually targets one of the guys, especially Kyle since he is new to our family and Aaron still isn’t sure it’s OK that he married Andrea.  He targets Andrew because Aaron has always been somewhat jealous of his brother.  And he targets Gary because Gary is Dad, and Dad is acting way too silly. 

When Aaron sat down with us to play, we all quietly decided to try to make the game as non-silly as possible.  We also decided to be as quiet as possible when announcing that we had a Bingo.  However, this plan ultimately made us laugh even more…as quietly as possible but still not quiet enough for Aaron. 

But something else was also going on with Aaron.  Andrea later said it very well.  Aaron knew that things were very funny because we were all laughing, but he couldn’t figure out what the funny things were.  There were many comical moments, but none made Aaron laugh.  He was focused and intense and struggling very hard to keep from being angry.  There was nothing worth laughing about in Aaron’s mind.  Instead, he was wondering why we were all laughing at the gifts and at each other’s comments, and as we see every year, his tension was mounting and his fun meter was doing way down. 

My heart went out to him as I just watched him sitting on the opposite end of the table from me.  He had just won a prize and was so very seriously opening the little box. 

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He loved getting a Bingo, and I found myself wanting him to win every time.  But life isn’t like that, and I knew he needed to once again learn to be a part of our world…loud and puzzling and frustrating and disappointing as it is.  He can’t remove the parts of life around him that are not his normal.  He must adapt as much as possible, and we must also be allowed to enjoy our family life together with him when we can…when he can. 

There are small ways that we have learned to let Aaron be…to not ripple the water unnecessarily.  Like when he won a bottle of body wash, but it was ladies body wash.  With each other, we would have laughed at this…making fun of the girlie name on the bottle and teasing whichever guy had the misfortune of winning it.  But not with Aaron.  We just kept quiet about it, watching Aaron stash his prize safely on the floor beside him.  And later that night, I found the body wash placed in the shower to be used by him the next morning.  I never said a word to him about it, and he happily used it…and smelled very nice!

We pick our battles with Aaron when we can, happy that he actually made it through this Bingo game without an eruption of anger.  His anger later spilled out toward me after I made a random comment about forgetting to put the ham cheese ball out to eat, saying that maybe we should start our game all over.  That did NOT make him happy…and neither did my hand motions that he copied angrily.  He was so done with that evening!  All of us were picked out of his normal bowl, trust me!

I was happy that his seizure during the night didn’t ruin his Christmas day.  I was happy that he was able to open his presents, though he was heavy-eyed and dreary after the seizure.  I was happy that his other seizure later that day was during his nap, and that he didn’t fall down. 

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And I was especially very happy that our neighbor came over and took our family picture in front of our tree.

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For really, our family isn’t complete without Aaron.  He may want to kick us at times out of his normal bowl, but then he does turn around and let us back into his life. 

And we do the same with Aaron, over and over and over again.  We welcome…we include…we modify…we adjust…we sigh…we go to bed tired – but we do love our Aaron and will always want him in OUR bowls as much as possible.