When Questions Come

I’m sitting at the kitchen table on this fairly early morning, listening to the sounds of my day beginning.  It’s really a quiet morning, almost as if the outside fog is buffering all other noise.  I hear our Great Dane let out an occasional groaning sigh, so typical of him.  He just ate his breakfast and ran outside to do his business, so he is once again lying on his big pillow with his ever-present blanket close by his side.  I hear the swishing of the washing machine as it begins to wash the load I just piled into its tub.  I hear the quiet sound of the furnace running on this cool morning, and I am thankful for the privilege of heat for our house.     

There is another sound I hear, as well as one that I hope I do not hear.  I hear the sound of Aaron’s soft breathing coming from the couch where he is now lying.  Every little bit I hear the soft fluttering sound of an almost-snore coming through his lips.  His head is on his very fluffy black pillow that he often perches behind his back when he watches TV or when he reads in bed at night.  And he is all snug under his new animal print blanket that he received from Paradigm for Christmas.  This is his new favorite blanket that has now been added to his growing list of bed covers at night……..and it is put on his bed in just the right order, which is on top of all the other covers so the fun animal print is visible.  I hear his slurred speech as he just stirred and asked about his coffee, and then was asleep again in seconds.  His throat is swollen and sore from probably the same virus that I had after Christmas, so I empathize with his pain and discomfort, and I wish he could have his warm coffee.

The sound I do not want to hear……..and the reason he is not drinking his coffee………is the sound of another seizure.  Aaron had two hard seizures during the night.  He has a bad headache right now, is very slow both physically and mentally, and will probably sleep for quite some time.  Yet his seizures usually occur in his sleep, and so I sit here listening and waiting and praying that he does not have another episode. 

I’m amazed at Aaron’s strength……at his ability to even get out of bed and make his way downstairs when he obviously feels so awful.  I’m amazed at his desire to keep his routines going even though he can barely stand.  He really wants to begin his day…..to get out of bed……to shower and drink his morning coffee…..and to talk, of course!  But none of this is very possible for him on this morning, so he clumsily made his way over to the couch and lay down.  I got his fuzzy pillow and animal print blanket, and he was asleep before I finished wrapping him all up in soft warmth. 

I don’t know why Aaron has to suffer like this.  His sore throat kept him from going to a basketball game last night with Barb, and that made me sad.  Now he also has seizures piled on top of feeling miserable anyway.  It’s very easy for me this morning to ask those ever-present questions……..the ones that lurk near the top of my mind on days like this.  Why does Aaron have to suffer?  Why is life so hard for him?  Why are things so complicated?  We’ve added a new drug to help with Aaron’s autistic behaviors, but is this why his seizures are increasing?  Now what?  One thing helps but also hurts, so here we go down this path again.  It can be overwhelming and frustrating and deeply hurtful to watch Aaron endure all of this. 

From the time our children are growing in our womb, our hearts are entwined with theirs.  We cannot, and would not, separate ourselves from their pain and their trials……but also from their joys and triumphs.  It’s just that poor Aaron doesn’t have a lot of joys and triumphs, it seems.  At least that’s how I feel on a day like today.  The poor guy is even color-blind! 

Yet I know from years of experience that when Aaron is suffering, like today, that I need to especially guard my heart.  It’s easy to keep trudging down that path of defeat and unanswered questions.  I will probably never know until eternity why Aaron suffers.  Why does Elijah, and so many others, suffer on such a great level?  Why did Paul, and Ben, and Katy not live past their young adulthood?  I could name so many families who are suffering from ongoing hurts and trials.  We all can.  Why?

Just like Job did, we question God sometimes.  I am convinced that God wants to use Aaron to point me more to Him.  To learn to give God my complete trust and my praise even on these days when Aaron is seizing and has a bad sore throat and wasn’t able to go have some fun at a basketball game like everyone else does.  Oops, there I go again……….letting my mind focus on the sad and the negative instead of on God. 

I opened my Bible here at the kitchen table while listening to Aaron’s sleeping sounds.  I sometimes just open it and see where my eyes land, and what God has for me in those verses.  This morning it was Job 9, where Job talks about God’s power revealed in nature but also questions God’s bruising and wounding in his own life.  Job couldn’t figure out what God was doing at all, and neither can I.  Oh, I know what God was doing with Job because I have the whole picture as written in the book of Job.  But I don’t see that whole picture in my life as it relates to Aaron’s sufferings. 

Reading Job 9 today reminded me of how God led me one morning in a hotel room in Missouri to read Isaiah 40.  Reading those verses about God’s mighty power in creation impacted me more than anything had in a long time.  I was reminded that this powerful God Who holds the oceans in His hand can certainly heal Aaron……..or do any number of other things that would mean a lot to me.  Yet He is also worthy of my complete trust when He does NOT choose to heal or to rescue immediately…..or ever.  I trust God because I know Him, even when I don’t understand Him.

Those surrounding chapters in Isaiah are rich with promise.  God does not become weary; His understanding is unsearchable; His strength is there for me; He will hold my right hand; He tells me not to fear.  He doesn’t say I won’t hurt or that I won’t question.  But my thoughts are to not dwell on those questions as much as they dwell on the One Who has the answers……….revealed to me now or not. 

So I wrap up my heart with God’s promises just as I wrapped Aaron up in his special animal print blanket this morning.  Once again I face my hurts and my pain for Aaron, propped up with God’s ever present love and his strong arms that are always under me.

Like Job I can say, “I have heard of You by the hearing of the ear; but now my eye sees You.” 

Experience does that, you know.  We can see God in ways we never have before. And that kind of experience is never wasted.    

Can I Talk?

It seems that Aaron has come down with my sore throat virus that I got after Christmas.  That was a wicked sore throat for me, so if Aaron feels the same then I feel very sorry for him.  I also feel sorry for him because he was really looking forward to going with Barb, one of his day group staff, to watch her daughter play in a basketball game this evening.  Now he can’t go and he’s very disappointed.

Aaron doesn’t care about sports, but he does care about several other things.  He loves Barb and so spending time with her outside of his day group was something he really wanted to do.  She also told him that there was a concession stand there, which he knows means food, and so he had already asked me if I would send more money with him today.  “Lots of money!” he said yesterday.  Lots of money for lots of food, which fits into Aaron’s agenda very nicely.  Now it’s applesauce and hot tea with honey for him.

The other thing that Aaron cares about is talking.  Talking and eating are his two top priorities in life.  Aaron is definitely not a non-verbal adult with autism.   Talking, and having listening ears around him, is of utmost importance to him.  Therefore, I should not have been surprised, when Aaron was talking about this basketball game, to hear him say, “Mom!  I asked Barb if I could talk at the game.  She said yes!!”  So now he was set.  There would be food and there would be talking…….especially his own talking……..and so he was happy. 

There will, as Barb said, hopefully be another basketball game for Aaron to attend.  For now, Aaron will eat here at home.  He has already requested his lunch – leftovers from last night of his favorite chicken casserole.  And he has asked if he can pour and drink the last of the coffee.  His day at home is beginning well and is full of promise, that’s for sure.

And for now, Aaron will also talk here at home.  Not even a sore throat will hamper his verbal skills.  I love Aaron and I love to hear what he says…….within reason.  Last night I had nearly reached the end of my listening skills, however.  He didn’t see me lowering my head and didn’t hear my sighs as I heard him thumping down the stairs once again to tell me something.  He also didn’t see my relief when he breezed past me to head down to share something with Gary.  Yes, Aaron, share the wealth…….please! 

I remember the Saturday morning a few weeks ago when Aaron would not stop talking.  Sometimes it’s just too much, especially when the subject is aliens or transformers or anything from a Star Wars game.  Finally Gary said, “Aaron.  Be quiet.”   Aaron said, “Why?”  And Gary wisely answered, “Because I want you to.”

Then Aaron responded with, “Ok.”

Pause from Aaron before saying, “And then why?”

Laughing felt good right at that moment.  Aaron sees no reason to be quiet.  One day I was trying to listen to an interview on the radio when Aaron popped in my room and of course, proceeded to talk.  I held up my finger and told him to hush while I listened.  He promptly said, “Sorry you’re listening to that and I’m talking.”  And he also proceeded to keep talking until I escorted him from the room. 

He has found that Jackson is a willing listener but not a great responder, so Jackson doesn’t get the amount of conversation that we do.  But one day Aaron excitedly said, “Mom, I said Great Dane and his ears act like they’re listening!”  Aaron loves listening ears, even on a dog!

Aaron even talks in his sleep.  I often hear him on the monitor having a regular conversation, including laughter.  He coined a phrase for this activity when one day he said, “Mom, Brandy and Barb were doing something on the computer where you could hear a voice but not see anyone.  Is that called voiceage?” 

So with Aaron, we have voiceage as well as normal conversation.  And there are many times that I just know I hear him when he’s not even in the house.  It’s a mom thing, I know……..and it’s an Aaron thing. 

I’m very thankful that Aaron talks.  I recognize that non-verbal autism would be heart-breaking on many levels.  It’s just that I sometimes reach overload, like Aaron did last year when we were having new siding put on our house.  Aaron would wake up in the mornings to the sound of loud hammering, especially when the men were working on the outside walls near Aaron’s room.  One day, totally frustrated, Aaron said, “I’m ready to let them be quiet!!”

Oh, Aaron, if only it were that easy.  Trust me, there are times that we are ready to let you be quiet.  But not for too long.  You do make life interesting and amazing, and I have tons of quickly jotted notes to prove it……….more notes than I will probably ever be able to even put into this blog. 

So keep talking, Aaron.  Because we want you to……..really.  And you’ll know when we’re ready to let you be quiet.  Like I said, if it were only that easy. 

It’s a NEGATIVE!

Aaron walked into the kitchen this morning around 7:20.  If I was Aaron, I would give you the precise time, such as he did with me after entering the kitchen.  “Mom!  Last night I went to bed at 10:42 and today I woke up at 6:53!”  This is always funny to me.  I never tire of hearing his precision with time like I tire of many other things that Aaron so often repeats.  He continued by wanting to know if he got enough sleep and then he volunteered to take his shower.  He sure was happy on this Monday morning, I thought………too soon.

It wasn’t long after his shower and after he was once again downstairs that I noticed a darkening of his once cheerful mood.  “Mom, do I have to go to Paradigm,” he asked?  I said yes and he proceeded to push a little more as he asked why he had to go.  He knew it was cold and that it was Monday, both of which were reason enough for him not to want to go to his group.  But his voice was getting angry now as he went downward on his path change.   Soon he answered me, as I was trying to reason with him, with a loud “NO!” 

Knowing that he was on the path of no return, I just turned around and marched up to his room without saying a word.  He quickly followed me and once again yelled as I started to unplug his keyboard.  As I turned and spoke firmly to him, he stared at me in defiance.  Then when I once again said that he would go to Paradigm, he sat on the edge of his bed and said, “NO!  It’s a NEGATIVE!!”

And then I knew.  I knew that Aaron had seen the outside temperature of -4 degrees on his indoor weather station.  This is a first, I thought.  There have been many reasons over the years that Aaron has refused to cooperate when it comes to leaving the house in the morning, but this was the first time that his reason was a simple, “It’s a NEGATIVE!”

Now in a way it was comical, especially with the way he phrased it.  It was once again hard for me not to laugh at him, but doing so would have only made him VERY angry.  It was a huge deal to him that it was a negative temperature outside.  Aaron is as particular about the weather as he is about the way that he makes his bed and places his pillows and covers just right………or the way that he meticulously clips the coupons………or reads his Handy Answer books at night………or how he watches all the credits on his DVDs…..ALL the credits.  Anyway, differing weather patterns, and definitely differing temperatures, throw him for a loop.  He cannot make the weather cooperate in his orderly world, so he will instead want to use it as an excuse for not going on about his day.

The negative temperature outside had quickly become a negative inside as well.  His attitude was negative, as was mine, and this whole morning was now headed down a very negative path.  It was enough to make me want to throw out those wonderful weather stations along with all the Christmas leftovers I was chucking in the trash!  Who cares what the outdoor temperature is?  Well, Aaron does………way too much!  Isn’t autism fun when a simple weather station and a simple negative temperature can cause such complex problems?  Good grief!

Well, to make a long story short, Aaron on his own started to have a definite mood improvement.  He eventually asked if we could use his Burger King gift card for another biscuit that he could take to Paradigm, so we did that.  Barb, at Paradigm, said that later Aaron had a little Burger King picnic on the floor of her office.  He was happy, despite the negative.

I’ve been thinking about myself today and all this negative business.  How do I let the negatives affect me?  Not the negative temperatures, but the other negatives in my life.  Will they make me angry, irritated, full of self-pity, aloof, bitter?  I often can’t control my negatives any more than Aaron can control the weather, but I CAN control my reactions to the negatives that come my way. 

We work and work with Aaron in his autistic state in order to better enable him to handle his reactions and emotions.  Likewise, I know that God works and works with me in order to better enable me, through the Holy Spirit, to handle the negatives of this life.  To not let them get me down and out………to not let them make me yell, “NO!” to God or to anyone else……….to not let them become an excuse for shutting myself inside myself and not opening up to all that God has for me.

God wants me to go about my day, just as much as we want Aaron to do likewise, without letting the negatives call the shots.  Let the negatives become positives, and decide to sit down and have a happy picnic.  I know it’s often easier said than done, but it is a choice that only I can make.  I hope Aaron has learned today that he did survive the negative……..and I want to learn that I can survive the negative, too. 

However, I do hope it’s a little warmer tomorrow.