Thursday, March 3, 2016

Last Blog Here

Sadly, I'm writing to let you know that this is my last post on BlogSpot.  I've enjoyed blogging here, but problems have arisen on this site that remain impossible to fix.

BUT.....

I haven't quit writing.  I am now posting on WordPress, so if you're reading this and want to join me there, please do!!

My new address is:

www.hesaidwhatks.wordpress.com

Come on over and let's pick up where we left off.

See you there!

Monday, February 22, 2016

Set Sail!


It’s a good thing that I looked in the cabinet this morning, checking on a key ingredient that I needed for my chicken dish that we’ll eat for tonight’s supper.  I thought I had plenty but I didn’t, so I quickly added it to my short grocery list and was able to stop at the store later to pick it up.  Being prepared is important! 

This small episode fit perfectly with what I read this morning during my quiet time.  I actually learned a new word…..a Greek word.  Well, most Greek words are new to me, but this particular word made a huge impression on me.  I hope it will do the same for you.  The word? 

Pleroma.

Impressed yet?  Hang on.

Pleroma was part of the ancient world’s shipping vocabulary.  It has to do with being complete or being full.  Here is what Raymond Brown says about pleroma in his book The Message of Nehemiah:

            Pleroma….described the ship’s complement.  Before leaving port the vessel was carefully checked to ensure that there was an adequate crew and that the cargo included sufficient food, drink, medical supplies, spare cloth to replace torn sails, ropes, in fact everything necessary for its journey.  That was the ship’s complement or completeness. 

A departing ship today, and especially in ancient times, definitely had to be careful to have all necessary supplies before sailing.  No ship would leave for a journey until it was filled with supplies….filled with all it needed for the time on the open sea.
 
 
 
OK, so why was this word such a blessing to me today?  And why do I pray that it’s a huge blessing to each of you reading this as well?

Because pleroma is the word that John uses in John 1:16.  “For of His fullness (pleroma) we have all received, and grace upon grace.”  Again, Raymond Brown says:

            John’s Gospel began by assuring its Christian readers that, however great the pressures of life, all their needs would be met out of the abundant completeness and inexhaustible sufficiency of Christ.

You see, God doesn’t push His children out on life’s voyage without preparation.  Just like a ship being loaded up in the dock before setting sail, so God loads us up with all that we need for the ride that is ahead of us.  We don’t even know that He’s doing all that work on us most of the time.  All the equipping and the completing comes as we live day by day, getting to know Him better through His Word and through the growth that comes with each new trusting time in our lives. 

Then the waves come crashing in and the journey is long.  The ocean is big and scary.  Don’t think that when you’re slammed in the face with an unexpected trial, God didn’t know beforehand that it would come.  He knew.  He in His sovereignty ordained and allowed it.  But not before He prepared you for it.  God completed you, and is still completing you, with all that you need for the rough waters all around you.

Pleroma!!

Grace upon grace.  Unmerited favor from God, over and over again.

Blessing upon blessing as we sail through the waters and as we experience God’s complete provision for all we need, before we even knew we needed it. 

God prepared you, and me, for every single event in our lives before we needed it.  And He then stacks grace upon grace as we live through the tough times…..blessing upon blessing…..growth upon growth. 

God loves His children.  He’s a good God.  He would never leave us incomplete, lacking what we need. 

He alone is really all we need.

So even when we don’t understand our situations….or don’t like them….or are hurting….afraid….turned upside down….

Pleroma!

You are complete.  You are filled.  You are ready to sail! 

Trust your Captain.  He’s got your course all charted, and He’s got you more equipped than you realize.

Of His fullness we have all received. 

 

Sunday, February 21, 2016

You Might Live With Autism If....


Here are a few snippets of life with Aaron from the past few days – otherwise known as:

You might live with autism if:

·       You poor one cup of coffee for Aaron, knowing that he always has three cups.  You tell him that you are brewing more coffee and will pour his other two cups when the fresh coffee is ready.  But he won’t let you take the one cup to his room until the other two are poured and ready to go.  You don’t take ONE cup of coffee to his room…..ever!  You take THREE cups!!

 

·       You hand him a piece of sausage that he wanted in a napkin, to be eaten similar to a cookie.  Silly you!  Sausage goes on a plate, not in a napkin.  You just do it with no argument, because you know that arguing about these critical matters is useless.
 

 

·       Aaron has watched four seasons of The XFiles.  For Christmas he received the remaining five seasons.  He decided to finish watching The XFiles, but instead of starting with season five, he is going to start watching from the beginning – again.  You try to talk him into just starting with season five since he’s already watched the first four and he seems to agree, but later walks back into the room, obviously in discomfort.  You give your blessing to him starting with season one, despite how long it will take now to watch the entire series….because you know he’ll do it that way anyway.  So you may as well remove the burden from his shoulders and let him fully enjoy the ENTIRE series, watched the way he wants….all together the way they should be.

 

·       Aaron had a couple seizures during the night, so on Saturday he was very tired.  He decided to lay back down later in the morning.  Then you have this conversation:

Aaron – Will you get me up?

Me – Sure.  What time do you want up?

Aaron – Before 1:00

Me – OK, I’ll get you up before 1:00.

Aaron – What time is that?

Me – I don’t know.  Just sometime before 1:00.  What time do you want that to be?

Aaron – I know!  Get me up at 1:00.

Bedroom door closes.

Bedroom door opens.

Aaron – How about 12:30?

Me – 12:30?  Are you sure?

Aaron – No.  Let’s do 1:00.

Trust me.  I got him up at 1:00.  Not 12:59.  Not 1:01. 

1:00!!

 

·       Aaron has a bad headache after having seizures.  While we changed his sheets, because it was Saturday and we always change sheets on Saturday, I asked him how his head was feeling.  He told me it still hurt, so I made a sound of concern.  You know, a soft murmuring sound…..mmmm.  Aaron’s response:  “You’re weird, Mom.”  He doesn’t appreciate soft murmuring sounds of concern….or crying…..or most hand gestures…..

 

You might live with autism if:

·       You go on a walk with Aaron and he finds a “thorn seed pod,” as he calls it, and he carries it proudly home.  It is given a place in his room among all the other treasures he has found on walks, in stores, at his day group, etc.
 

 

·       You go on another walk and Aaron finds a feather this time, which he carries for the remainder of the walk, trying to feed it to our Great Dane…who has no interest in feathers that anywhere matches Aaron’s.

 

·       You go to the grocery store and as you look up from the self check-out register, you see Aaron sitting on the empty display shelf in the front of the store.  Smiling.  Content.  Not one bit embarrassed. 
 

Which is how I know I should be with Aaron, even after I say, “Let’s go, Aaron.”  And he answers with, “OK, babe!” 

“How come you say only Dad can call you babe?” he asks for the zillionth time. 

And for the zillionth time, I know that life will never be mundane or usual with Aaron. 

You might live with autism if:

·       You know it’s really all right that life will never be mundane or usual with Aaron.  Most of the time it’s fun.

 

·       You think of song titles at times like this.  Titles such as “I Like You, Babe.”

 

·       And thinking of what Aaron says, not all the time but most of the time, makes you smile.

 

 

 



Wednesday, February 17, 2016

Stuff It!


Several years ago I wrote this short piece about Aaron and the covers on his bed.

 

Helping Aaron change his sheets today reminded me once again of another characteristic of Aspergers - an insistence on sameness.  Aaron wants every wrinkle pulled out of his covers when we're putting them on his bed, and there is one smaller blanket that must be centered.  Not only that, but he likes several blankets, in addition to his sheet, and they must be put on his bed in a particular order. 

 I remember once, several years ago, that as I helped him change his sheets I decided that there was a better order for the blankets to be put on the bed.  My order made it easier to tuck the sheet and blankets under the mattress.  So I matter-of-factly showed him my plan as I changed up his plan for the Order of the Covers.  He said he didn't like it.  So very patiently I showed him again that my Order of the Covers was a good Order of the Covers.  The same covers were included as always but in a different order.  Aaron stood there pondering and the only word that he heard, as I would soon discover, was the word "different."  Not the word "better" or the word "good," but only the word "different" - which is not a favorite word of Aaron's.  He complied with my plan at that time, and so we completed the bed making with the new Order of the Covers.  I trotted happily on my way without giving that exchange a further thought. 

 Until the next morning.  Aaron usually makes his bed before leaving the house, but something that next morning didn't seem right about his bed and so I took a look.  AH HAH!!  After we had gone to bed the night before, Aaron got up and changed the Order of the Covers back to HIS Order of the Covers.  "Well, well, well," I thought.  Two can play this game!  And I changed the Order of the Covers back to MY Order of the Covers.  HaHa!  That'll show him!  Neither of us said a word that night before bed, but don't you know that when I got up the next morning he had changed the Order of the Covers back to HIS Order of the Covers again?!  We went back and forth then for several days in our silent battle over the Order of the Covers.  Finally, though, I faced reality.  Did I really want to spend the rest of my life remaking his bed every morning?  Was this issue really worth that?  Nah, I didn't think it was. 

 I conceded.  He won the Battle of the Order of the Covers.  Good grief, I may as well admit it.  He won the whole war! 

 

Well, as of last August Aaron has a newly painted room along with a new bedspread, new valence on his windows, new pictures on his walls….new, new, new!  I wrote about his insistence on keeping his books on the floor beside his bed, despite the NEW lined basket that I have in his night stand for just that purpose.  Aaron doesn’t really care about new lined baskets nearly as much as he cares about his routine of keeping his books and notebooks on the floor beside his bed in a tidy little row.  So just like I quit fighting the order of the covers, I also quit fighting the books on the floor. 

 
 
Now we have yet another war.  This one concerns his bedspread.  His nice new bedspread.  I noticed something funny about it one day as I helped him make his bed or change his sheets….I don’t remember.  But I do remember that something wasn’t right about his bedspread on one side.  I pulled and tugged, only to find that the whole right side was tucked in, like a sheet.  But you don’t tuck bedspreads in like you tuck in sheets. 

Aaron noticed me looking at the bedspread as I tried to figure out what was wrong with it. 

“Mom, I like stuffing it,” he said.

“Ah, stuffing it,” I replied as I began to understand what he had done.

“Yeah, I stuff it,” he went on.

Well, I proceeded to unstuff the bedspread as we made his bed.  I explained that we don’t tuck bedspreads in like we do sheets. 

“Why?” Aaron asked.

And I explained that bedspreads are made to hang down nicely, all smooth and pretty, and not be tucked in. 

“So I shouldn’t stuff it?” he asked.

“No,” I answered.  “You don’t stuff it.”

So you can guess that over the next few weeks I have often found that his bedspread has been stuffed.  I have then unstuffed it.  But at night, as he and I get his room ready for bed or maybe after I leave the room, he stuffs the bedspread again. 

The other night he saw me staring down at the stuffed bedspread once again.  I looked at him and didn’t have to say a word. 

“You don’t want me stuffing it, Mom?” he asked

“Right, Aaron,” I answered for the umpteenth time.  “You do not stuff your bedspread.”

“You mean you don’t want me stuffing it because you can’t see it?” he wanted to know.

And I told him it was something like that.  Explanations don’t matter one bit to Aaron, I have learned.  Pretty hanging bedspreads matter not at all to him, either.

So today I found once again that his bedspread had been stuffed.  I asked him to please tell me why he stuffed it.

“Well,” he began in all seriousness.  “I lean my feet against the side and they halfway come out under the blankets.”

Aaron doesn’t like his feet coming out halfway under the blankets.  I didn’t even bother to ask him what position he had to be in for this to happen.  I know that we are in another war and that Aaron will win this bedspread war as he also won the war of the order of the covers.

So now instead of saying, “Bring it on!!” – I say, “You know, it doesn’t really matter in the great scheme of things.”

I will make his bed the way I want it made on the days that I have the opportunity, but otherwise, stuffed it will be.

I’m just thankful that Aaron makes his bed, to one degree or another.  And maybe we’ll come to a compromise…..stuffed at night, unstuffed in the morning. 

A sleeping bag on top of his bed is sounding better all the time, actually.



Saturday, February 6, 2016

Can You Be Sure?


Aaron had a seizure at 4:30 this morning.  It was around two minutes long, shorter than some but always too long.  No seizures at all is definitely preferred, but that doesn’t seem to be what God has planned for Aaron in his life.  His nocturnal seizures are why Gary and I still sleep with a baby monitor on our nightstand.  Aaron knows that I go into his room when I hear a seizure and that I’m there to help him as needed. 

Aaron got out of bed around 7:00.  I would need to look in his log book that he keeps to see the exact time. 

OK, I just snuck in his room and took a peek.  He wrote down his getting out of bed time as 7:02.  Isn’t he funny and amazing?

He drank his three cups of coffee, as always…..and he bugged me about a fourth cup, as always.  He said his head hurt, too, as always it does after a seizure.  I can only imagine.

And as always after a seizure, he decided to go back to bed.  He told me his plan, but he wasn’t forgetting about that fourth cup of coffee.

“Can I have a fourth cup when I get out of bed?” he hopefully asked.  And I gave him some hope that he could.  He has no idea what all I would gladly do for him on these seizure days.  I try not to show my hurting heart generosity too much, either, because good old Aaron will jump on that like a tick on a dog.  Forget the fourth cup of coffee!  Let’s go for five or six!

After Aaron had the assurance that a fourth cup of coffee was a real possibility, he started to walk away.  But he came back to the top of the stairs, one more request on his mind.

“Can you make sure I don’t have another seizure in bed?” he asked me.

Oh, if only I could!  I might have to think about granting a fourth cup of coffee, but if I could grant that my son have no more seizures then I would do it in a flash. 

I knew what Aaron meant.  I try to get him to express himself more clearly, so I asked him how I was supposed to do that.

“Can you hear if I do?” he clarified.

“Yes, I’ll hear if you do,” I answered.  I assured him that I had the baby monitor on right beside me and that I would be listening.  He was satisfied with my answer and with the knowledge that Mom was keeping her ear open, so off he went to bed. 



It’s sad to see that Aaron shows this fear of having a seizure.  I don’t blame him one single bit.  He doesn’t remember the seizures, but he’s seen friends at his day group have them and so now he knows what they look like.  And he certainly knows what they feel like when he wakes up with a bad headache, sometimes a bitten tongue, losing his sense of taste, and other complications.  It’s a very hard thing to see your child endure this.  Harder still to see your usually unexpressive adult child begin to verbalize his fears. 

Victory in the verbalization…..sadness in the expressed reality.

I am Aaron’s strength right now.  I am his comfort and his hope.  Me….and the baby monitor.  Aaron is depending on us to be there for him and to help him if he has another scary seizure.

This morning I had planned to write about Nehemiah and the guarantee that he gave the children of Israel as they built the wall of Jerusalem.  I didn’t know I would have this illustration from Aaron.  I would rather not have it.  I would rather use another example from some other scenario in my own life that doesn’t involve him.  But this is where God has us.  This is His sovereign plan, one that I trust even when it hurts.

The Jewish people were rebuilding the wall of Jerusalem, but there were enemies who didn’t want them to succeed.  These enemies used words of discouragement and ridicule, but when they saw that the Israelites were serious about rebuilding the wall they changed their tactic.  The enemies became intimidating, threatening to kill not only the workers but their families as well. 

The Jews became scared.  The enemies’ threats were working.  In Nehemiah 4:10, it was said that the worker’s strength was failing.  That word, “failing,” meant to stumble or totter.  The workers were literally tottering under not only the physical work they were doing, but especially they were stumbling emotionally and spiritually under the continued threats they were facing from their enemies. 

They were scared.  And in verse 14, Nehemiah said that when he saw their fear he spoke to them….to the nobles, the officials, and to all the people who were so afraid.  Here’s what he said:

Do not be afraid of them!  Remember the Lord Who is great and awesome, and fight…..”

This verse has been on my mind for a couple weeks now.  I’ve had some fears and concerns in my life.  Health issues for Aaron, for Andrea, for Gary.  Aaron’s behaviors that impact him and us so much.  Andrew adjusting to a difficult new job.  So many other things that jump around in my brain during the dark night hours when I’m unable to sleep…..

I could name fears that I know so many of our friends are experiencing.  Life has changed in a moment for some.  Then there’s the continuing impact of those changes.  Strokes….dementia…..upcoming surgeries…..serious infections…..the diagnosis of a child with a potentially life changing syndrome…..ongoing multiple children with special needs….exhaustion…..job uncertainties…..

Our life stresses are like the enemies of the Jews in Nehemiah.  They surround us, threatening us with their potential or certain life changes.  We sometimes stumble under the burden of it all.  Fear is very debilitating.  Our mind goes places it shouldn’t but it’s so hard to keep from doing that.

This is why Nehemiah’s words have meant so much to me lately.  I need to refocus my focus.  I need to choose what I allow my mind to dwell upon.  The answer is simple, but difficult, because the enemy wants me to stay glued to my fears and my worries…..both the known and the unknown.

But…..REMEMBER!!

Remember the Lord!!

The Lord Who is GREAT and Who is AWESOME!!

God’s got this….all of this.  Whatever the enemy is throwing at us, whatever we see around us, whatever we hear in our head in the dark of the night….is NOT what we are to remember or to dwell upon.

Our God is great and He is awesome.  The battle is His, not mine! 

And so I fight, but I’m not the one fighting.  I am allowing God to fight for me as I pray and give Him my battles and my fear and my worries.  When I feel that familiar fear being thrown at me from the enemy outside the walls of trust, I remember and I remind myself that God is the One Who will fight for me.

The Lord Who is GREAT!

The Lord Who is AWESOME!

I’ll hear you and I’ll be there if you have another seizure, Aaron.

“Can you be sure?” he asked.  “Yes.  I’ll be sure,” I answer.

I’ll hear you and I’ll be there in your fears, God says to me.  

“Can you be sure?” I ask.  “Yes.  I’ll be sure,” He answers.

“Our God will fight for us!”  (Nehemiah 4:20)

Remember!  The Lord!



Sunday, January 31, 2016

The Scar


It’s been an interesting week.  I guess that’s one word to describe it.  Other words would apply as well.  Stressful…..demanding…..concerning…..worrying.  In case you’re wondering what I’m talking about, you can read about it in the blog I wrote.  Here’s the link:



It hasn’t just involved Aaron, though.  Yet he certainly does take center stage in our lives.  All the above descriptive words certainly can, and do, apply to him.  I’m reminded of our bad beginning to our week now every time I walk into his room and see this.



“This” being the place on his wall where a picture similar to the one hanging USED to hang.  Used to hang before he yanked it off the wall in a fit of anger on Tuesday….after fits of anger on Monday.  Anyway, read my last blog, like I said.  It explains more about what happened.

Now we’re left with the ugly reminder there on his wall.  A reminder of a bad day….of hurt….of anger….of events that led up to this ugly scene and this ugly spot on his wall.


A scar. 

It would be easy to see this scar and to focus on the bad things that happened that day.  It would be easy to see this scar and to remember the awful feelings….the frustration….the anger…..the failures.  Both mine and Aaron’s, for sure. 

However, there are other parts to this whole story, too.  There are other pictures that I can choose to focus upon if I just will. 

And there it is.  It’s a matter of my will, of my choosing, as always.  I can choose to only conjure up the depressing thoughts of those two days, and of this past week generally, or I can instead choose to ponder also on the bright spots. 

On Monday evening, after Aaron’s really bad day, he suddenly asked if he could write our friend Atha a note.  He knows Atha, and he has heard us talking about her stroke.  Aaron rarely offers on his own to write anything to anyone, unless it’s what he wanted to write on a sticky note about me on Monday.  It wasn’t nice, either.

So this idea of his to send Atha a get-well note in his own words was just a very special, unexpected warm moment in the midst of a terrible time for him and for us.  That made it a double blessing.  A very needed blessing, double at that!!




I can look at the scar on Aaron’s wall and I can remember this precious note.

Also to be remembered are the prayers of friends and family….the kindness shown when aware of our need….the time spent with friends and the encouragement of warm hugs.  There was Julie, an employee at our Dillon’s, who asked me out of the blue if I needed any more one dollar bills for Aaron.  It’s not easy to get the ones when I need them, and I had forgotten in my stress that I was running low, but Julie saw me and asked me….said she thought I might be running low….said she was looking out for me.  She has no idea, though I told her a little, of how much that meant to me this week.

The scar on Aaron’s wall can remind me of all those blessings.

And there is the recliner at Dillon’s – two recliners, actually – that Aaron sat in the first time he saw them.  They were something new.  Something fun!  But probably not something that Dillon’s wants everyone to sit in and enjoy like Aaron does.  J  So the next time we saw them, in front of the registers, each chair held a huge stuffed animal.  I laughed and told Aaron that now he couldn’t sit in them since they were already occupied.  I figured that Dillon’s had a motive for putting those animals there.

On Friday, Aaron and I were there after I picked him up from Paradigm.  We were ordering him his favorite Cheddar Pasta Salad when suddenly he took off walking briskly toward something.  I thought he was headed to the Chinese side of the deli.  He LOVES looking at the Chinese food, and having the workers ask him what he wants while he laughs and says he’s just looking.  Every time.  But on Friday, when I looked up to see him walking away, I soon saw where he was headed.




Yep.  He spied the recliner, moved to a new spot in the store.  The empty recliner….but not for long.  Look at his smile.  How could I not smile? 

I see the scar on Aaron’s wall and I see the choice I have to make.  Aaron knows he did wrong and he knows he must wait for the wall to be repaired.  I don’t need to keep hammering that home to him.  But there are some issues that sometimes need hammering into my brain as I look at his scar.

What will I allow that scar to teach me?  What will I allow that scar to do to my heart and to my spirit?  Will I use that scar to remind me of the bad, or will I use that scar to let me remember the blessings in the midst of pain and the lessons learned in the hard times?

We all have them, those ugly scars of life.  We can wallow in anger and unforgiveness….regret and guilt…..pain and sadness.

Or we can choose to do what God said and forget those things that are behind, and press forward.  I know we can’t really forget, but we can forget in the sense of clinging on to them and letting the defeating thoughts control us.  What’s done is done.  Let God handle it as you pray and trust.

And as you forgive those that have hurt you, whether they know it or not.  Like Gary said on Monday night, our relationship with Aaron is much like God’s relationship with us.  It’s one of constant sin on my part and constant forgiveness on God’s part.  How can I do less? 


I want my scars to be touch points for memories of God’s grace in my life, and then for me to extend that grace to others…..including….especially!....Aaron.






Thursday, January 28, 2016

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