I Love This Day

Aaron had an appointment this afternoon with his Epilepsy doctor, and as always on doctor days, he and I went out to eat lunch.  Aaron loves these lunch dates, not necessarily because of the company but because of the FOOD.  But maybe I’m wrong about that, because when we pulled into the parking lot of Carlos O’Kelly’s and were taking off our seat belts, Aaron said, “I love this day.”  That made me smile a huge smile as I asked Aaron why he loves this day.  “I love this day with you,” he said. 

So OK, my heart was sufficiently melted and I was surprised I could walk into the restaurant.  Yet Aaron was already leading the way, so I had no choice but to follow.  He beat me into the entrance and was already rolling the little toothpick dispenser around as he gathered up three or four toothpicks…..while the greeters greeted him and Aaron ignored them.  The girl who ushered us to our booth smiled broadly, though, and I could tell that she understood and liked Aaron.  We moms of special children just know.   Aaron was oblivious of any of this.  He was just happy to have had the time to get several toothpicks before picky Mom made him stop……and I wondered if he still loved this day with me.

We sat down, and before our understanding greeter could hand us our menus, Aaron was already telling her that he wanted water.  Except he always asks if he can have water, as if he needs permission.  She and I both told him at the same time that our server would bring water, but Aaron was already opening his menu.  He needs lots of time to try to match what he wants to eat with the pictures that are shown.  Our greeter also handed us a special menu that was for items that would only be available for the next week.  She told us that this menu was for us to keep along with the two regular menus.

Our pleasant server introduced himself as Aaron quickly asked him if he could have water, and soon Aaron and I were looking at our menus.  Our water came, but no straws…..and straws are a staple to Aaron.  Our server immediately realized his mistake, apologized, and hurried off to bring us straws.  “He’s clumsy,” Aaron said.   “He forgot our straws!”  I was thankful that Aaron didn’t repeat this to our server when he returned to take our order.  I handed him our menus when we were through placing our orders, but I forgot the special menu laying off to the side.  He asked for it as well, and after I gave it to him, Aaron said that he thought that this menu was ours to take home.  I realized then that Aaron had pushed it to the side in order to hide it.

“Why did you think it was ours to take home?” I asked. 

“Because that girl told us to keep it,” Aaron patiently replied. 

As so often happens, statements that often slip right past me certainly don’t slip past Aaron.  Literal Aaron.

We munched on chips and salsa, and when Aaron’s salad came he dug right in to that…..only pausing to grab another chip or two here and there because he didn’t want me to eat them all.  He always keeps a close eye on the chip bowl when we eat at Carlos O’Kelly’s.  Soon our meals came, and when the plates were in front of us I took a bite of my enchilada.  Aaron looked at me eye to eye and said, “Are we gonna pray?”  He held his hand across the table for me to hold as we always do…..and my heart melted again.  How could I forget to ask the blessing?  But Aaron remembered….and I’m almost glad that I forgot because it showed me that Aaron remembers!  He remembers these important lessons…even when silly Mom doesn’t!

Aaron watched the servers as we ate, and he listened as I thanked our server for filling Aaron’s glass with water or bringing us extra napkins.  “We’re nice to the staff, right?” he asked.  I agreed that we should be nice to the staff…..the servers.  “It’s hard to be staff,” Aaron continued.  He knows that sometimes people aren’t kind to servers and this bothers him.  I remembered the last time that we ate here.  One of the servers dropped a napkin, and Aaron looked at her.  “Hey!” he said.  “You spilled your napkin.”  It was funny and sweet, and I was glad that she laughed and that she thanked Aaron for pointing out her napkin that spilled.  

Soon we saw a group of servers singing Happy Birthday to a diner.  Aaron, who doesn’t like having Happy Birthday sung to him….or to anyone, really…..did not care for this display of silliness.  “Oh my word!” he said.  “Tell those people to shut up.  We’re trying to eat!”  So much for being kind!  I was very thankful that we had an end booth, and that for once Aaron spoke rather softly.

As we finished eating, our server asked if we would like dessert.  I declined, saying that we were full, but Aaron didn't want to let that idea slip away.   Dessert sounded very good to him today.  “Why didn’t you order dessert?” he asked.  I told him that we didn’t need dessert, and besides, we were full.  He wasn’t convinced, I could tell.

“Are you full?” I asked him. 

“Yes,” he truthfully answered, before thinking of the consequences of admitting fullness.

He recovered quickly.  “I mean, not TOTALLY full,” he explained.

I laughed….and still said that I did not want dessert.

“But I mean dessert, just for me,” he countered.

Good try, Aaron, but it’s still a no.  So we got up from our booth.  I headed one way and Aaron headed the other, so I turned to head him off, wondering what he was doing.  Aaron saw our server and I saw what Aaron was doing. 

“BYE!” Aaron said as he waved.  It was another sweet moment, and I was so thankful that our server…..our staff, as Aaron says…..told Aaron goodbye. 

I like Aaron to walk in front of me when possible in interesting places like restaurants.  That’s so I can intercept him when he stops to stare at someone’s food….or pulls the leaves of the plants…..or stops to feel the texture on the walls…..or any number of other unique behaviors.  Like how he stopped today to feel a fake cactus on our way out, and comment loudly about its fakeness. 

Of course, he immediately stopped at the faithful toothpick dispenser as we passed it before leaving.  Out came two more toothpicks as he turned the knob.  Our understanding greeter just smiled and I was relieved. 

I had told Aaron earlier that we were having chicken for supper.  As we left the restaurant, I asked him why he got more toothpicks. 

“They’re for the chicken tonight,” he flatly answered. 

Of course.  I should have known that.   

We had to interrupt our fun by going to the doctor and talking about adding a new medicine….and taking away another medicine……and doing a sleep study…..and discussing Aaron’s hand tremor….

But Aaron also had the doctor laughing about how the Rocketeer looks like a grasshopper in his mask…..and how the holes in the ceiling of the exam room were made by paper needles……and many other comments that only Aaron makes.

He had me standing in the corner of the elevator as we left the Epilepsy Center so that I could feel what he feels from that vantage point as the elevator went down.  It was just the two of us in the elevator, but I knew that if there were others in there, Aaron would still have insisted that I stand in the corner so that I could enjoy what he enjoys.  He bent over and rubbed his hands together in great delight, and we exited the elevator laughing and talking about what we felt.

We went into Best Buy on the way home, and Aaron immediately stopped at the entrance to ask the employee there if they had the Beauty and The Beast DVD….and I so resented how that guy looked at Aaron as if he was a Martian.  He needs to ride in an elevator with Aaron, I thought.  He needs to look at life through Aaron’s eyes instead of looking at Aaron through his uncaring eyes.  He has no idea what he’s missing.

Hey, Aaron!  Guess what?  I love this day!  And you know why?

Because I love this day with you. 

 

DO Sweat the Small Stuff!

Aaron seems to have almost fully recovered from his no good, very bad seizure episodes that began on Thursday night and went into early Saturday morning.  This was a tough round for Aaron, taking a huge toll on him physically and mentally.  He slept and slept…..he’s been very slow in both mind and body…..and he hasn’t wanted to eat much.  Not eating much is a sure sign that he isn’t himself.  He also developed a sore throat that didn’t help, and of course his bitten tongue has made eating difficult.  Yesterday, on Sunday, we saw more of the old Aaron return….and it was a welcome sight, even when he was trying to feed the dog. 

On Saturday he finally woke up “for real” around 12:45, meaning that he was more alert and more able to really talk to us.  It was around lunch time….although we know lunch time to Aaron is as close to 12:00 sharp as he can make it……but I offered to heat him some potato soup anyway.  I had made the soup the day before…..the day of his terrible seizures…..but all that day he hadn’t been able to eat a thing.  I hoped he could enjoy his favorite soup on Saturday, so I heated him a bowl.  He couldn’t eat it, though, stopping after managing only a couple spoons full.  I put it back in the frig, and he hasn’t touched it since. 

Something else unusual is that he offered to take a shower without being prompted.  He actually wanted to shower, so as soon as he was steadier we let him get cleaned up.  Later, he and I went on a walk around the yard with Jackson.  It was good for Aaron to get some fresh air on that beautiful, warm January day.  Then we soon got in the van and drove up to check out the car wash, which was still too crowded, so we went on down to the Little Caesar’s pizza shop.  He and I waited in the drive-through line, and soon I looked over and asked Aaron if he wanted some bread sticks.  I rarely let Aaron have bread sticks, though he always wants them.  He just doesn’t need the extra calories when he’s going to eat so much pizza.  He was very surprised when it was ME who brought up bread sticks.

“Yeah!!” he responded when I asked him if he wanted them.  His eyes brightened and he was very happy…..and I was happy, too.  What a little thing that meant a LOT to Aaron.  And to me, if anyone deserved some bread sticks at this moment, it was Aaron.

Once at home, he only barely managed to eat one piece of pizza and one bread stick.  Normally, he would have tried to wrangle that whole pizza down his throat, plus all the bread sticks.  Honestly!  But not on Saturday, when he was still recovering, and also fighting that sore throat and damaged tongue.

Aaron continued to recover yesterday, gaining his strength and his spunk.  His appetite still wasn’t back to normal, but he was talking more and managing the stairs more easily.  He began to watch his Indiana Jones movies that he had started last week…..and we knew he was feeling more like himself when he started talking to us about them as well.  I know that Gary and I will soon tire of his repetitious talk about these movies, but I also know that we will relish having old Aaron back with us.  Remind me I said that in a day or two when my brain is numb from his constant talking.

I stood in Aaron’s room on Friday night, when he was still so affected by the seizures, and I watched him get ready for bed.  I helped him get the covers on his bed just right according to Aaron standards, and then I stepped back as he finished his routine.  He was slow and unsteady, but nothing was going to stop him from getting his room exactly perfect. 

He carefully pulled back his covers, and every bit as carefully placed his stuffed snake in his bed.  He made sure that Mr. Snake was very straight, with just enough of his head on the pillow.  Then Aaron took his old stuffed skunk and placed him right beside Mr. Snake, just so-so.  The skunk’s little tail was arranged correctly, along with his paws and his head.  Aaron didn’t speak a word, working slowly with purpose……and slowly because of the seizure effects.  He pulled the covers up when he was finished, letting Mr. Snake’s snout still show, but totally covering the little skunk.

Then Aaron smoothed out any wrinkles that he had made in his covers before he headed around the bed to pull back the covers on his side.  He got his long pillow situated just the way he likes it, pulled over to just a certain point that only Aaron knows.  He made sure that his nightstand items were still where they were supposed to be, in the right place and order.  Then he picked up his notebook in which he writes the times that he gets up in the mornings and the times that he goes to bed at night.  He had to write in the time for that morning since it was blank because of his seizures.  I watched him write 8:17 A.M., although I knew that was not the correct time that he got out of bed.  I wouldn’t tell him that, though, not for anything.  Then he wrote down his going to bed time and carefully closed his notebook, placing it back in the floor with the pen on top, just right. 

 

He still had his glasses on, so I asked him if he wanted me to put them on his bookshelf for him.  He agreed as he slowly took them off, handing them to me.  “Put them by my watch,” he instructed me as I turned to lay them on the top shelf.  So I did as I was told, and I laughed inwardly as Aaron leaned around to examine my placement.  I hoped it was correct…..and it was….so Aaron was finally, I hoped, ready to actually get in his bed for the night.

I got his covers pulled up close around him the way he loves, and we talked for a minute before I turned his lamp off.  But just as I was shutting his door, as he so often does, I heard him say, “Mom?”  So I opened the door and said, “Yes?”  And he paused before I heard, “Mom?  Is it almost 10:00?” 

“Yes, Aaron, it’s almost 10:00,” I assured him.  You see, Aaron can barely tolerate going to bed before 10:00.  So just as his snake and his skunk and his covers and his pillow and his nightstand and his going-to-bed and his getting-up times and his glasses beside his watch and his covers pulled up…..ALL had to be JUST right…..so did his actual time to bed.  Or at least as close to right as possible.  He had to ask, even though his clock was there beside him on his nightstand right where it was supposed to be.  I guess he just had to hear Mom confirm to him that it was near enough to 10:00 to go to sleep.  The world would still turn, even though it wasn’t exactly 10:00….or later.  So I closed the door and Aaron quickly fell asleep.

Aaron doesn’t act like his seizures greatly concern him.  If they do, he doesn’t say much about it.  He has wished that he didn’t have seizures and that he didn’t need to take pills, but he doesn’t seem to get depressed or sad about it.  He manages to push on ahead despite the pain and the side effects that the seizures cause.  But don’t mess with his bedtime routine!  Don’t ask him, if he has any cognizance at all, to go to bed with his two stuffed animals out of place or his covers wrinkled or his glasses not beside his watch or his time not written in his notebook.  That would be disastrous!

These facts are some of what is so amazing about autism, and about Aaron.   I guess, in the long run, it helps Gary and I handle the stresses of Aaron’s situation a little easier.  We talked about Aaron’s bedtime routine that night, and we laughed…..when there hadn’t been much to laugh about that day, for sure.  We laughed because Aaron is truly unique, and his being unique is often a cause for us to smile and even laugh. 

I can’t take away Aaron’s seizures, but I can usually accommodate his desire for order and routine in his world.  My world, and Gary’s world, may be anything but orderly in the process…..but that’s OK. 

And one more thing.  You know the saying, “Don’t sweat the small stuff?”  With Aaron it’s just the opposite.  He DOES sweat the small stuff, and seems to let the big stuff roll off his back.  Sometimes that’s very freeing when we stop to consider that the big stuff in Aaron’s life is at times really serious.  It helps get our minds off our sadness and fear as we are pulled by Aaron into focusing on stuffed snakes and wrinkled bed covers.

Leave it to Aaron to pull us into his world, and to get our minds off of our other worries……with a stuffed snake, no less!     

 

 

The Darkness

On Thursday evening, Gary and I noticed that Aaron didn’t seem quite like himself.  He became lethargic as the evening wore on, even falling asleep sitting up in his favorite family room chair.  Then he wanted to go to bed early…..and for Aaron to agree to a bedtime before at least 10:00 is very unusual.  It’s like his lunch at 12:00 mindset.  Bedtime should not occur before 10:00 in Aaron’s world, so his desire to head on up to bed at 9:30 combined with his tiredness made Gary and I wonder what was going on with him.  

Therefore, we weren’t too surprised to hear him having a seizure a couple hours later.  It was a very hard seizure, lasting about four minutes.  Three other long, hard seizures followed that one during the night.  He wet the bed after the second one, bit his tongue during the third one, and I walked in his room at his fourth seizure to find him on the floor.  We have no idea how that happened, because he was in a sitting position with his back against his night stand.  Blood was coming from his mouth as he bit his tongue again.  Gary and I eventually got him back in bed, and then later before Gary went to work he was able to get Aaron a little cleaned up before helping him downstairs to the couch.   

 

Aaron slept all day, with only a few short waking moments when I was able to give him his pills or something to drink.  At 3:30 he woke up and told me that he didn’t feel like going to Paradigm.  He was so shocked when I told him that it was 3:30 in the afternoon……that he had totally missed Paradigm that day and didn’t have to worry about it.  He had no memory and no idea of what had happened. 

I don’t tell all this to garner sympathy or to any way embarrass Aaron.  I tell these things in an effort to share with others the faithfulness of God in the midst of pain…..the pain of a mother for her son, in our case……the shared pain of parents bearing this burden together……...and the pain of fear that often tries to settle its icy grip in our hearts.

This seizure episode for Aaron has been a bad one.  In fact, he had another small seizure early this morning.  He got up later but wanted to go right back to bed.  His tongue is extremely sore and damaged, and he also has a sore throat now.  Worry and sadness could easily be my companion this morning.

Sadness was definitely near me yesterday morning as I sat at the kitchen table while Aaron slept nearby.  At times like this, I desire to hear from God.  I know that the comfort He gives is like no other.  I don’t doubt Him.  I don’t question why he allows this to happen.  I’ve gotten to know Him over the years and I know that He is always loving, and good, and that His sovereignty is beyond my understanding.  I trust Him.  What I desire is His comfort during the moments when my heart is a little fractured, and my emotions are raw.

I would like to remain free of emotion when it comes to Aaron and his special needs.  Emotion hurts.  Emotion means that I’m thinking of Aaron and what he is enduring…..and what he’s missing in life……and what the future might hold.  But how can a mother keep her son at arm’s length and not at times deeply hurt over his pain?

Such was my morning yesterday.  I was hit with the reality of Aaron’s suffering.  I cried.  I just let myself feel the pain for a few moments and I cried in my hands.  And God saw His daughter crying and He comforted me.  I love, love, love how He speaks to me through His Word when I need it the most.  I’ve started reading Daniel, and there it was.  My eyes fell on Daniel 2:22:  “…..He knows what is in the darkness, and the light dwells with Him.”

Most of Aaron’s seizures are during the night as he sleeps.  I detest that sound coming out of the baby monitor on my nightstand…..the sound of Aaron’s seizure beginning.  It jolts me out of sleep and it always fills me with dread.  I never get used to that awful sound.  And the darkness.  Our room is dark, the hall is dimly lit, and Aaron’s room is very dark.  I turn on his light, not knowing what I will see, and I stay with him until the seizure is over and I know he is safe.

Then usually I will hear that gasping sound later again coming from the monitor as another seizure begins.  The scene is repeated…..the darkness…..the dread…..the fear.

So this verse from Daniel was very special to me.  Once again, God reached down to me in my particular situation and spoke especially to me as the loving Father that He is.  He knows!  He knows what is in that darkness that I face, whether it’s the physical darkness of nighttime seizures or the darkness that fills my soul with fear for Aaron.

And guess what else?  Listen to Psalm 139:11-12:  “If I say, surely the darkness will overwhelm me and the light around me will be night….even the darkness is not darkness to You, and the night is as bright as the day.  Darkness and light are alike to You.”

Those words are so sweet to me.  I felt overwhelmed yesterday with hurt and fear for Aaron.  It’s a darkness as real as the darkness I face when I am awakened with the sound of his night seizures.  But God is there in the dark.  He’s the light!  There is no darkness to Him.  He knows my dark fears and He knows my pain, yet He was there yesterday to remind me that He is light in my darkness.  He knows what is in my darkness as I hear Aaron seizing, and as my own heart is seized with sadness and with dread.

I can trust Him with my pain, and I can trust Him with my son.  He said that darkness and light are the same with Him…..and that the night is as bright as the day.  His promises and His peace are my light in the darkest dark.

So I took our beautiful bright sunrise this morning as God’s personal gift to me.  I relished it as His reminder that no matter how often I feel that the light around me will be night, God says, “No way!  The light dwells with me….and so do you, little daughter.  Now enjoy My light, even when it seems dark.”

We have a good God.

 

 

 

 

 

Lessons From the Bean Patch

“In this world, nothing can be said to be certain except death and taxes.”  We all know this famous quote by Benjamin Franklin.  I might add one more item to his short list of certainties:  hurt.  Please don’t think I’m being negative.  It’s just that the longer I live the more I see it…..the various hurts that impact lives and families.  It seems that no one is immune from sometime, somehow, having to face hurt.  And how we respond to those hurts is paramount to our happiness and even our health. 

Sadly, even Christians suffer hurts that are sometimes at the hands of others.  Like I said, none of us is immune from hurt.  As believers, we have a standard for dealing with hurt that goes far beyond any self-help book ever written.  Of course, I mean scripture.  But still, dealing with the pain of various hurts is very difficult…..and sometimes lasts for the rest of our lives. 

When forgiveness is sought by the offending party, and reconciliation is offered, then the healing can more easily begin.  This certainly is the desired outcome for anyone who has or is suffering from the hurts inflicted by others.  But what is one to do when forgiveness is not offered, and when the desire for reconciliation is rebuffed?

Which brings me to my bean patch from last summer.  Stay with me here.  Those who know me know that I learn many lessons from my simple life of household and outside chores.  So last summer, in June, Gary and I were gone for a week.  We returned from our trip to find that our garden had grown tremendously.  I saw right away that I had tons of green beans to pick.  Well, not tons but it felt that way as I bent down to examine the vines.  I had so much catching-up work to do after our trip that I was unable to make it out to the bean patch for a few days.

Finally, one early morning, I was able to pick the beans.  My five gallon bucket was full to the brim with all those beans.  Soon I called my neighbor to ask if she wanted some, and she gladly said yes…..so I trotted over to her house with a bag of beans for her family to enjoy.  It took me awhile to get back to my bucket of beans, which I washed carefully…..strung and snapped……and put on to cook.  As I worked with my beans, I began to fear that they weren’t in great shape.  And sure enough, when they finished cooking my fears were confirmed. 

I had tough beans.  Not only did I have tough beans in my pot, but I had shared my tough beans with my neighbor.   So I called her and I apologized for the inedible beans, after which I threw our tough beans away.  I knew the problem:  the beans had stayed on the vine way too long.  As they lingered on that vine, under the hot Kansas sun, they toughened until they were of no use.  I needed to pick them days earlier, but I hadn’t done that….so my beans were tough and useless. 

This bean experience made me think of a situation that Gary and I have had…..and in some ways are still experiencing.  It has to do with hurt, as I mentioned earlier.  The hurt that is not handled…..is not dealt with properly…..and does not result in reconciliation.  Over the years of our situation, Gary and I have learned some things…..some do’s and don’ts of dealing with unreconciled hurts.  Maybe some of you can benefit from a few of the lessons that we’ve learned in the hard classroom of a hurting heart. 

FORGIVE:  It’s much easier, I believe, to forgive someone when they do as Luke 17:3 says:  when they truly repent and ask for forgiveness.  But what is one to do when the offending party doesn’t repent….doesn’t ask for or seek forgiveness?  We are to, simply, still forgive.  God’s commands are clear, given for a reason.  It is always our responsibility to forgive. 

But how do I forgive when the person who has done the hurting doesn’t ask for, or even seem to want, my forgiveness?  I asked my brother, Dr. John King, about this issue.  He reminded me that the word for “forgiveness” in the Bible often has the meaning of the word ‘release.’  It’s the word used of a fisherman releasing his fishing line…..casting it out and away from him.  Likewise, I am to do some releasing.

I am to release the offender to God.  I do this over and over and over, maybe for the rest of my life.  When I feel anger, resentment, old memories surface, when I see this person……whatever it may be…..I once again should make it a matter of my will to once again release this person to God.

I also am to release my anger and my bitterness to God, realizing that these emotions are sin.  I may be able to rationalize them, but they are still sin….and so I release them to God.

I release any right I may think I have to get even, to gossip, to undermine this person.  Do I fail at this?  You bet!  And that’s why I’m so thankful for God’s continuing forgiveness of my own sin. 

BE FAITHFUL:  Gary and I could easily have walked away from our situation.  Nothing was holding us there…..except God….and people that we loved.  So we stayed in ministry and service, and we were so blessed beyond description during that time.  Staying also gives the offenders more of an opportunity to make things right.

And even beyond that description of faithfulness, and more importantly, is to simply be faithful to God.  Don’t give up on your faith because others, especially others of faith, have brought such hurt into your life.  Their actions should bear no impact on your own walk with the Lord.

WATCH YOUR OWN HEART:  Going along with the above is the admonition that David often wrote about in the Psalms:  Search my heart, O God, and see if there be any hurtful way in me.  Gary often told me, and our children, to not focus on the others but to focus on our own hearts.  Each of us needed to search our own hearts every day, and let God deal with everyone else.  If I’m busy concentrating on my own heart, and my own standing before God, I won’t have time or desire to be looking at anyone else.

SERVE:   Gary and I were, thankfully, already in some ministries that allowed us to serve those who had hurt us.  Though at times it was very difficult to do that, we knew that God wanted us to serve and to do so with a glad heart.  Those times truly aided in our healing.  It’s just an example of how God’s ways often don’t make sense to us, but His ways work! 

Once again, my brother talked to me about Proverbs 25:21-22.  There are varying meanings associated with this passage that talks about heaping coals of fire on your enemy’s head, but I love the picture that John gave me.  He talked about how in those ancient times, when a person’s fire would die, they would often go to someone and ask for a coal in order to restart their fire.  So what should a person do if his enemy came to the door asking for a coal?  John said that God would want His people to give them not just one coal, but heaping coals of fire.  I love that word picture! 

Pour a cup of coffee, prepare a meal, send a card, make a phone call……there are many avenues of service that can reach out to ones who would least expect it from us. 

PRAY:  Another way to serve and to bless those who have wronged us is to pray for them.  Pray for them and for their families, not just for the situation in which you find yourselves with them.  And pray for your own heart and attitude to be what God would want it to be.

DO NOT DELIGHT IN HARD TIMES:  One early morning, Gary came upstairs from his study and told me about a verse that God had impressed upon him.  The verse is Proverbs 24:17: “Do not rejoice when your enemy falls, and let not your heart be glad when he stumbles.”  Gary felt strongly that he and I both needed to be careful to not ever rejoice if any bad things happened to those who had wronged us.  There have been times that God has reminded me of that verse, and times that I have prayed for these as they have faced struggles, instead of delighting in their hardships.

And finally:

GUARD YOUR MIND AND THOUGHTS:  In Philippians 4:8, Paul gives an extensive list of things upon which our minds are to dwell.  It’s painful for me to read that verse because I see how often I have failed…..and fail daily…..to follow its admonition.  I believe this is especially true….the part about failing….when your heart is hurting and you are wanting to be vindicated.  I need to constantly remember that God will do any vindicating that is necessary, and that I am responsible to guard my thoughts.

Unresolved relationships can eat away at our souls like an acid.  Solomon warned us in Ecclesiastes 11:10 about this.  “Remove vexation from your heart,” he said.  Another version says, “Remove grief and anger from your heart.”  In other words, quit dwelling on all that grief and anger.  Continually dwelling on those hurts has been one of the hardest things for me to overcome…..and I won’t pretend that I’ve accomplished that yet.  I’m better, but I’m still at times overwhelmed with thoughts that pull me down into pain again.

And so I go back to that concept of releasing…..praying…..and watching my own heart.  Over and over again, because the issues were not resolved and the relationships not restored. 

Gary and I were finally forced to leave our situation.  We left…..but it has never left us.  And I’m back again to the bean patch.

Because Gary and I are still hanging on the vine.  BUT…..we don’t want to be tough or bitter, like our beans were.  How much better it would have been if the situation had been handled fully and quickly, like the beans that I harvested the week following the picking of the tough beans.  The new beans that grew were picked quickly, and they were perfect……crisp and delicious. 

Well, the response we have is totally up to us.  There are no excuses for our reaction to still being on the vine.  We can choose to be tough, or we can choose to obey God’s principles and still be growing in the way He wants.  To be better, not bitter. 

Remember how I shared my tough beans with my neighbor?  I don’t want to share bitterness with others over our pain.  I don’t want to be tough to those I encounter, or to my family, or especially to the Lord.  I know it’s been a process for me, but I pray that God will use my pain to produce tenderness in my life and heart….not toughness.  To not cast blame, but to take responsibility for my own actions and reactions.  To speak truth, but not with hatefulness or anger.

I had to throw away all those tough beans…..but not the lessons they have taught me.  I know that these lessons will always be with me.  I hope that my sharing them has helped you, too.

 

 

 

 

Laughter, Fussing, and Frowning

Aaron came into the kitchen early this morning, before Gary left for work, and the very first words out of his mouth…..the. very. first. ……..were, “Mom, so you’re saying that War of the Worlds was an old movie?  It was an old movie that had been made before?”  It was as if he was continuing a conversation that we had left three minutes ago, instead of nine hours ago, when he was going to bed.  I had to chuckle, which was better than crying.  You see, all weekend Gary and I endured endless discussions about War of the Worlds…..and Terminator.  Take your pick.  We were completely saturated with both movies, to the point that several times during the weekend we had to tell Aaron, “Enough!”  No more talking of these movies for the foreseeable future…..which wasn’t nearly long enough, in Aaron’s book……and so we would soon find ourselves once again immersed in movie discussions. 

Thankfully, Aaron moved right on to his next topic of interest.  “Mom, I woke up at 5:00!!”  Of course, I asked him why as he stood there staring at me waiting for me to ask him why….and he continued.  “The covers on the right side of my bed were not normal.  They were not like the covers on the left side.”  He again stared at me as he waited for yet another response, so I gave him another response by asking him why the covers were not normal and he gladly answered.  “The covers on the right side were ALL the way out!!  The covers on the left weren’t all the way out.”  So this is what I heard on the monitor at 5:00 this morning.  Aaron cannot tolerate abnormal covers on his bed, so he was up and about re-adjusting the covers so that the right matched the left.  And I laughed at Aaron’s description of his early morning effort to normalize his bed, and he was quite proud that he had made mom laugh, though he didn’t understand…..or care to understand….why.

Soon Gary was down, putting on his coat to leave for work, and Aaron immediately launched into his War of the Worlds observation.  Gary was still saturated by two and half days of movie talk, so he answered Aaron’s question that he had just asked with a little humor……which Aaron did not appreciate.  Aaron knew we were tired of movie talk, and he interpreted Gary’s humor as being insulting…..and so Aaron in turn insulted Gary……and we in turn fussed at Aaron…..and our day was off and running in typical fashion.  Laughing one second…..frowning and fussing the next. 

These ups and downs are true for all parents.  It seems more exaggerated with Aaron, at least to us, because of his age and his persistence.  He is not easily deterred from the paths of conversation that he sets out on, or the paths of behaviors.  We so wish we could detour him from some of the things he says and the actions he takes.  I wish this every time I read another incident report from Paradigm, where Aaron has taken the path of anger and rudeness.  He gets in so much trouble when he is trying to “tease” someone, or when something or someone sets him off. 

But then he can be so hilarious sometimes, and so endearing.  This weekend, he was very exhausting with all his movie talk…..following us around the house as he talked, or finding us downstairs watching football.  But then he would come out with something that made us laugh.  Like the football games, which he observes in his unique Aaron way:

          “So who are you guys voting for?”

          “Does the team you’re voting for have the most points?”

          “Does that football player have a pacifier in his mouth!!?”  (It was the

          mouth guard.  HaHaHa!!!)

          "I bet the man who taught the Carolina Panthers is not very happy that they only

          have 17!"

 

His humorous comments were like a breath of fresh air…..a wonderful break from War of the Worlds or Terminator.  When Aaron and I played Skip-Bo last night, I had to once again forbid any further movie talk.  We listened to Disney music on Pandora, and Aaron had fun trying to guess what movie the songs were from.  He would cock his head to the side in deep thought, and I knew he was re-living those old movies.  I enjoyed his reactions, and I relished another movie reprieve.  We had two games of peace, and then the second it was all over, he launched into more movie talk.  NO!!!!

We went to McDonalds for lunch yesterday, and again urged him to think of other things to talk about.  He was mostly quiet as he ate all of his burger first, and then tackled his French fries.  He will only eat one food item at a time.  He methodically ate every French fry, one at a time, by dipping them slowly in his very, very full ketchup cup and then taking a bite……dipping slowly again and taking a bite…..over and over.  At least it kept him busy and not talking about movies.  And then he spied a little girl looking at him and he stared back.  I was nervous.  Would he stick out his tongue or be nice?  We never know.  But he smiled at her and then said, “I was smiling towards the little kid.”  I was relieved at his sweetness, wishing it could always be the case with Aaron.

Last night as we watched the Broncos losing the football game, we heard Aaron’s loud thumping down the stairs.  Gary and I both commented about it, how soon it was that Aaron had just been downstairs to talk more about movies and here he was coming down again.  It’s wearying, really.  Aaron bounded in the room and stood between our chairs, looking down at me as I sat there looking up at him…..waiting with dread for his latest movie verbal digest once again.  But this time, Aaron wanted to hand me his nearly empty bag of Skittles…..the bag that he had been eating out of all weekend.  In the bottom of the bag were several remaining Skittles.

“Here!” Aaron said as he held the bad toward me.  “You can have the rest of these, Mom.”  I thanked him but told him that I really didn’t want them right now, and that he should eat the last Skittles.

“No!” he insisted.  “I want you to have them.”  And with that, he put his hand in the bag and dug out the few remaining candies.  He put his hand toward me and I held my hand out, receiving his gift.  I really don’t enjoy eating something that Aaron has fingered as much as he had those Skittles…..because I just don’t know where Aaron’s hands and fingers have been, honestly.  But God has blessed me with a strong immune system, so I took the Skittles, hiding from Aaron my hesitation. 

I laid them on the table beside me, and Aaron picked up a couple of the orange ones because they look green to his color blind eyes…..and he wanted to show Gary the new green apple ones……but he realized they were orange, so he put them back in my little pile.  More handling, I thought.  But while he stood there watching me, I picked them up and ate them.  This made Aaron happy.  He wanted to share with me his special candy, and he knows that Gary doesn’t eat candy, so I was the recipient of every single Skittles…..germs and all.

And today I’m alive to tell about it.  I don’t even have a sniffle or an upset stomach.  But I have the memory of Aaron’s sweet sharing.  He shares with us in so many ways, in many different colors and flavors, his life and his take on it.  Like I said earlier, we can be laughing one minute, and then frowning and fussing the next.  There are so many ways we wish that we could change our big, loud, rough Aaron.  But then there are many ways that we wouldn’t change a thing about our kind, sharing, funny Aaron. 

Yet he comes as a package, as all children do, and we know that we have to love all of him.  We DO love all of him.  We cherish the positive and we work on the negative.  We ask God for wisdom, and we ask others for forgiveness or understanding when they are affected by Aaron’s behaviors.  We share life with Aaron, usually Aaron’s way.

Laughter, fussing, frowning…..germs and all.  It’s worth every part....every color.

Love Rules!

Here we are.  It’s the third day of our new year.  The third day of new beginnings, so I’m told, and new attitudes…..new challenges and new goals……new everything.  But I have our washing machine running this morning and it’s reminding me that the sameness of life also continues despite my desire to work up some enthusiasm for newness.  Aaron had a seizure last night and so once again I am washing his bedding from the mattress pad up to the top layer…..his favorite cheetah blanket, or whatever animal it represents.  I’m not complaining at all.  It’s our life and I’m thankful that I’m here to be a part of it, and to care for Aaron.  It’s certainly not new.

Aaron doesn’t care for new, unless it’s a new video or a new bag of candy.  He doesn’t like new routines or new schedules, and he doesn’t like the people or the holidays that cause a disruption to his sameness.  On Thanksgiving Day, Aaron came into the kitchen while I was preparing our meal.  He asked when we would be eating.  I told him it would probably be around 2:00.  He stared at me for a few seconds and then said, “That’s why I was thinking if I could eat lunch.”  I didn’t have to look at the clock to know that it was nearly 12:00 and to Aaron, 12:00 means lunch……Thanksgiving Day or not.  He did agree to wait for his meal, but he did give remaining in his routine his best effort as well.

We try not to give in to Aaron’s routine oriented way of viewing the world when there are special days or events to consider.  We give it our best effort in order to include Aaron in our family traditions and our special times together.  Yet we know that at times it’s not only difficult but nearly impossible for Aaron to comfortably enter into our celebrations together as a family.  The complexities of his autistic world, at times, will simply not allow him to move beyond a certain point.  There are several reasons for this dilemma that he…..and we……face during the holidays.

One reason revolves around conversation.  Aaron doesn’t understand and is rarely able to enter into the normal ebb and flow of family conversation.  Andrea and Andrew both came home for Christmas on Christmas Eve.  We sat around the table and talked that evening, and all of us noticed Aaron.  He had moved to one end of the table.  His eyes darted back and forth between us as we talked.  We were catching up with Andrea and Andrew……their lives…….their jobs……their friends.   Soon Aaron would loudly interject with his “Hey!!”  And we would all look to him as we gave him an opening to talk, but he often didn’t quite know what to do with this opportunity to enter into our flow of talk.  So he would pause and then he would continue.  “Uh…..well…..did you know that my favorite character on Phantom of the Opera is the Phantom?!” 

His comment didn’t fit at all into what the rest of us were discussing, but we’re used to this with Aaron, so we all commented in some way.  We really tried to act as interested in what he was saying as we did with the rest of our conversation, but sometimes it’s hard.  And if you give Aaron an inch, he’ll take a few dozen miles and he’ll talk until the rest of us are…….honestly……..bored beyond words.  So after we all responded to Aaron, we would pick up our conversation where we had left off and once again Aaron would sit there with darting eyes and bated breath, waiting for his next opportunity.  “Hey!!”  And we waited.  “Uh…..well……did you know that there’s a Queen alien?  Is she bigger than the other aliens?  Why do you think there’s a Queen alien?”  So then it’s our turn to say, “Uh….well…..we didn’t know that, Aaron.”  Come on.  Show interest……show enthusiasm for Queen aliens and for Phantoms and for whatever else Aaron chooses to talk about, we’re all telling ourselves. 

Another reason that Aaron gets stuck during the holidays in his point of no return is the change in his routine.  Everything is messed up.  His meal times……watching Wheel of Fortune with Mom…..bedtime rituals, especially if Mom doesn’t come right away to say goodnight……playing SkipBo……..having his bathroom to himself……and so much more.  His brain is soon on overload, no matter how Gary and I try to maintain his sense of normalcy. 

The third reason for Aaron’s holiday struggles……and probably the straw that breaks the camel’s back……is having to share his time and space with others.  Aaron has gotten used to being the only “child” at home now.  He is doing better with having Andrea and Andrew come for visits…..probably because he knows he can talk and talk to someone other than Mom and Dad.  We weren’t sure how he would react to Megan, Andrew’s girlfriend, being here again this year.  Megan arrived the day after Christmas.  I was a little nervous, but I greatly relaxed as we all stood in the kitchen chatting and I noticed that Aaron was happily talking.  Soon I had him tell Megan about his movie of the moment…..Phantom of the Opera……which fortunately is one of Megan’s favorites.  Aaron loved feeling included as all eyes focused on him, and he really enjoyed our interest in hearing him sing his favorite Phantom of the Opera song.  He’s hilarious when he sings and we all laughed with him as he relished being the star.

 

And then I goofed.  Aaron had returned to his room, so I asked Andrew to go up and tell Aaron that it was time to eat.  There are reasons that this wasn’t a good idea, but suffice it to say that Aaron from that point forward began to do down the path of frustration and anger.  He wanted me to come get him for dinner, for one thing, and though we roll our eyes at that, it was this important to Aaron.  His nearly overloaded system was beginning to crack under the holiday strain.  He was rude to Andrew during lunch and we knew then that we were facing an uphill battle.  When we later opened presents from Megan, Aaron sat with his back to Megan and Andrew.  He was edgy still. 

Then off we went to walk through Botanica and see the Christmas lights.  It was cold and we all bundled up, and piled in the van……including Aaron.  I let him have his favorite, normal passenger seat, beside Gary.  And wonderful Gary walked beside Aaron and kept defusing him the whole way through Botanica.  You can see in the pictures that Aaron is NOT seen.  When he’s in this frame of mind, you can forget pictures.  They only make him angrier.  We were way down that frustration path at this point.

 

 

We got home and I was hurriedly taking off my coat, getting ready to set out all the snack foods to enjoy while we played our Christmas games.  Aaron knew he was welcome to stay downstairs and play the games with us, but Aaron detests this part of Christmas.  He doesn’t like the silliness and the loud laughter…..at all!  And in the mood he was already in, we knew he wouldn’t want to stay.  So as I removed my coat, Aaron turned to me and loudly said, “Mom, I wish Andrea and Andrew and Megan would just leave, and that I could have things normal again!”

Embarrassing, yes…….especially because Megan is still new to all this and we so wanted her to feel welcome.  Thankfully she’s kind and understanding.  You must be in these situations with Aaron.  But Aaron’s comment was also telling as he revealed, in his blunt way, that he wanted his normal life back.  The night went downhill from there, if that was possible.  The five of us totally enjoyed the games, but we were often interrupted by Aaron’s heavy footsteps on the stairs and the floor as he came down to check things out.  He really wanted to enter in, I believe, but he didn’t know how to comfortably do that.  At one point, he looked at the container full of wrapped Bingo gifts and he softly asked if he could have one.  That made us sad.  Of course, we let him unwrap one and he was happy to get a Wal-Mart gift card.  Then off he went to stew in his anger some more.

 

Aaron and I eventually ended up in my bedroom, where he talked angrily about how we only love Andrea and Andrew, and only want to talk to them….and to Megan.  He cried for a long time, a sure sign of deep frustration.  My heart hurt for him as I tried to comfort and assure him of our love.  I really believe that Aaron senses a difference in how we talk…..our inflections and our words……when we talk to him compared to the others.  Try as we might, we can’t manufacture the same interest in his comments compared to theirs.    Aaron is perceptive……so perceptive. 

I also know that he needs repercussions for poor behavior, so I took the movie away that Andrew got him for Christmas, as well as the lap desk from Megan.  Finally Aaron came downstairs, face and eyes red from crying, and he gave a semi-apology to them.  I helped him into bed, but it wasn’t long before we heard him coming back downstairs.  He walked into the room where we sat, tensely waiting for another outburst.  But in his hand he carried his Ghostbusters movie, which he thrust toward Andrew.  “Hey Andrew!” he enthusiastically said.  “Have you seen this movie?”  And Andrew, with equal enthusiasm, said that he had and then he said, “Who you gonna call?”  Aaron laughed and took the movie back upstairs…..and we knew that his crisis was over and all was well once again.

The next morning, Aaron wanted to give some of his crescent rolls to Megan and Andrew for breakfast.  And when they left for a couple days, and returned to see us again, Aaron was fine with that.  I wish this scenario wouldn’t be repeated next year, but I’m realistic enough……we all are…..to know that it very well might be.  I returned Aaron’s movie and lap desk from Andrew and Megan to him, hoping that he understood the consequences of poor behavior and the reward of good behavior.  We always hope that Aaron will understand and that things will click in his brain, but his brain isn’t like ours at all.

 

So we do our best to understand Aaron, and to love him in all his unique and often frustrating ways.  Like Andrea said to Megan on the night I was upstairs with Aaron, as they cleaned the kitchen…..”So now you see what it’s like to be a part of our family.”

Yes, it’s not easy to be a part of this family sometimes.  Sometimes I think…..AUTISM RULES.   But then I realize that only one thing really rules.  LOVE RULES!!  We don’t necessarily love autism, but we all love Aaron.  We seek to understand autism, and therefore better understand Aaron.  I see growth in all of us that has occurred over the years.  It’s the growth based on our experiences with Aaron, and growth based on knowing that Aaron may improve in some areas, but he will never be totally like the rest of us. 

We may feel beat up and tired and angry ourselves, but we must remember that love rules over all.  God’s love for all of us, and our love for each other and for Aaron, will remain firm during these rough spells.  There’s nothing new about that, even in this new year. 

What a long post!  I have laundry to put in the dryer, and much more to wash.

With love.