Fixing the Broken

Last night I felt like this:

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Mangled.  Broken.  Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group.  Mixing all the various special needs can at times be volatile.  Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair.  I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later.  I hoped that maybe, just maybe, they really weren’t beyond repair.  The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

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WOW!!  Talk about a miracle re-do of what I thought was hopeless!  She received my profuse thanks with a smile on her face and the comment that she loved a good challenge.  I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually.  I believe that about covers it.  And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty.  Talking about being truthful, Aaron is just that…at least in his mind.  He has few filters, and totally does not get social norms.  He is often unaware of other’s feelings.  He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning.  His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired.  I get angry.  I did last night, when Aaron who had been happy decided to be rude just before bed.  He and I didn’t have our normal cheerful bedtime routine.  He was still out of bed, on his computer, when I went to bed.  I didn’t even challenge him.  I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron.  Somehow, it’s easier to show compassion for ones I seldom or only occasionally see.  Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add.  I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile.  He even received the hug I offered!  We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights.  I had intended to sit there and pray, but sitting with Aaron was important, I knew.  We talked softly about some of this and some of that.  Then Aaron decided that he could take his pills, but I reminded him that it was too early.  He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm.  I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule.  Gone was my caring at all at that point about the 12-hour rule!  In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh.  Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot.  But today Aaron let me laugh.  This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters.  Or the 12-hour rule.

But it was good.  Very good.

It was our normal.

And it was a gift.  A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

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But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.”  (Psalm 147:3)

 

 

 

Whose I Am

I read this once: “It’s not who am I but WHOSE I am.”

Honestly, in the past, I’ve gotten very caught up in the ‘who am I’ part of life. I could list all sorts of ‘who am I’ things in my life…all good things, but still my heart was often about ‘who am I.’ When those things were gone, God gently began to show me, through my pain, that what’s more important is ‘WHOSE I am.’ I belong to Christ, and He was the one who was washing the dirty feet of the disciples.

What God wants is our service, not our accomplishments. And service is usually low-key and humbling. Just some thoughts today. Oh, and if you think you’re not ‘doing’ enough, think again. Say a prayer, send a card, give a ride, share a hug…serve.

“So, whether you eat or drink, or whatever you do, do all to the glory of God.”                     (I Corinthians 10:31)

 

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Cool Aaron

My phone rang the other day and even before I looked, I pretty well knew it would be Aaron making his daily call from Paradigm, his day group.  Yep, there was Aaron on the other end of the call, talking the second I said “hello.”  He was excited and laughing about Chris, one of the Paradigm staff.

“Mom!!  Me and Chris are playing a game where I can’t talk!”

Well played, Chris, well played!   I just thought this.  I didn’t say it to Aaron.

“But Aaron,” I replied, “you’re talking now.”

“HAHAHAHAHAHAHA!!!!!”  Aaron bellowed.  “I guess I forgot the rules!!”

I laughed as well.  In fact, it felt very good to be laughing with Aaron.  I never know when I pick up the phone in what condition I will find Aaron.  Happy, sad, mad, crying, excited…I never am sure, so it’s with some dread that I answer his calls.

I had reason to feel dread this week because Aaron has been in a state of some anger and belligerence for awhile now.  We’re not totally sure of the why, but we are totally sure that his ups and downs are tiring to us and to his staff and friends at Paradigm.

This past Monday morning was rough at home.  I always let Aaron decide if he’ll go or not, knowing that forcing the issue is a recipe for disaster.  But Aaron also knows that if he does go to Paradigm then he gets extra treats and his meal of choice over the weekend.   He nearly always decides to go, but my reward system can also come back to bite me because the reason he goes is sometimes just for the future reward, and this stresses him to the point of bad behaviors.

Sometimes it’s just a perfect storm for a stormy day from Aaron!

Monday was that day.  Anger at home…then a calming…a fun ride to Paradigm because his music cheered him…and my last admonishment as he left the van.

“Aaron,” I said, “try to have a really good day.”

“I can’t make you any promise,” he seriously replied.

And I had to laugh at that as he walked away.  He was borrowing my often-used phrase when he tries to pin me down to doing something at a certain time, and I tell him I can’t make a promise.  How well he listens and mimics when it suits him!

And boy, it’s a good thing he didn’t make a promise to have a really good day because it was anything BUT a really good day!!  I’m very thankful for the patient staff at Paradigm!

Tuesday saw more issues at home, though not as severe as the previous day.  I was encouraged by his good day at Paradigm, but our evening at home hit bottom again.  He was not happy that Gary and I talked to our daughter on the phone before supper, in our bedroom with the door locked so that Aaron couldn’t come in and interrupt.  Aaron was very rude before supper and during supper.  Tough love ensued, ending with Aaron’s Cheddar Pasta Salad being taken away by Dad before he was through…and all his snacks being bagged up by Mom and put inside the locked van.

Well!!

Aaron finally calmed down as the evening progressed.  He turned a corner, looked at me as we watched a show, and surprisingly…and nicely…said, “Mom, I’m sorry.”

“Thank you, Aaron,” I replied.  “I’m sorry, too.”

“I like you, Mom,” he quietly said.

“I like you, too, Aaron,” I affirmed.

But the snacks stayed in the van, a test of his sincerity.

The next morning, yesterday, saw him irritable again and not wanting to hurry out of bed or hurry to get himself ready.  I don’t tell him to hurry – I’ve learned better – but he knows the underlying theme.

“Don’t rush me!!” he stated.  “I have no time to hurry!!”

Oh, Aaron!  I want to both laugh and cry when he talks that way!

So, this morning, we were getting ready to go to his yearly support plan meeting.  Again, he was sleepy and frustrated, and dreading this meeting.  It helped that we meet at Carlos O’Kelly’s and get to eat out, but Aaron still does NOT like meetings.  He wonders if he can stay at Paradigm, can he stay at home, and all sorts of other concerns.  I felt bad that he was scared so I assured him that things are staying the same for now, but still he was on protective mode.

“Mom, I’m telling them that you and Dad are starving me!” he declared, threatening to tell them about the locked away snacks.

Again, I didn’t react and told him he had every right to do just that.  But at the meeting, as he chomped down salad and chicken fingers and French fries, he was happy and loud and talked away at everything except his starvation.

We’ve been very weary lately, honestly.  I don’t know if his mood swings are because of medicine side effects…because of strong low fronts moving through this week…because of seizures last week…because of who knows what??

As we signed papers today, I laughed at Aaron’s signature.  This is his very favorite way to sign his name.

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Aaron has such a very hard time playing by our rules…the societal rules that dictate how we talk to others and respect others and give and receive love.  Try as we might, we cannot get him to tell us why he’s unhappy…at least not if his emotions are coming from someplace other than the fact that his snacks are locked away or he can’t stay home on his computer all day.

Aaron can convey plenty of facts.  What he can’t convey easily are his emotions…his deep-seated reasons for his angry actions.

Gary and I know this about Aaron, but sometimes it’s hard to remember it in the heat of battle.  That’s when we need to back away…take a deep breath…lean on each other and God…and remember one more thing.

Aaron Moore is cool.

He’s cool when he tries to sneak another notebook in to Paradigm to give away, knowing he’s not allowed to do that.

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He’s cool when he leans against my legs after he’s been so angry.

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He’s cool when he’s trying to feed an ant on the table at a restaurant.

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He’s cool when he’s giving and sharing.

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He’s cool when he’s “drying the bubbles off,” as he says.

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He’s cool when he’s playing a trick.

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He’s cool when he says, “MOM!!” at the grocery store and laughs and laughs at my reaction to him holding my LEAST favorite creature!!

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And in so many other ways, our unique Aaron is very cool, even when he makes me lose mine.

Let me remember that, Lord, in the heat of the moment.

Let me remember that you crafted and created Aaron’s coolness.

Aaron Moore IS cool!

 

Of No Use?

Our neighbors across the street from us had a yard sale a couple weeks ago.  Aaron loves yard sales!  He REALLY loved the fact that there was a yard sale right across the street!  He asked if we could go over and check it out to see if there was something he could buy.  I agreed, knowing that he would end up over there anyway talking to Derek and Gina until I came to the rescue and escorted him home.

Before we left, I remembered that in my wallet was an envelope that held Aaron’s remaining Christmas gift money.  I was always forgetting it was there!  I looked inside and pulled out the cash.  Aaron had $5.00 to spend, and he was happy.

It didn’t take Aaron long to spy exactly what he wanted.  A lava lamp!!  Aaron LOVES lava lamps and has been through several over the years.  He has a glitter lava lamp in his room now, but this was a good old normal lava lamp.   Aaron knew he had found his yard sale prize!

We looked at the sticker and guess what?  It was priced at $5.00!  Could it be any more perfect?  We crossed the street with the “new to Aaron” lava lamp, carried it up to his room, placed it on his already crowded nightstand, plugged it in, and went about our day.

Aaron was waiting, though, for the level gunk in the lamp to begin bubbling.  As he went about the remainder of the day and evening, he kept glancing at his lit lava lamp.  There was no motion, however.  The gunk was still.

“Mom!” Aaron finally said.  “Do you think I bought something that is of no use?!”

I turned my head away so I could smile at his phrasing.  He’s just so funny sometimes…so precise.

“No, not at all,” I responded.  “The lamp just takes some time to heat up the goo inside.”

Gary got home and Aaron happily showed him his new lava lamp…his still not-moving lava lamp.  Supper came and went, as did evening chores and Wheel of Fortune and watching our DVD show just before bed.

As Aaron got into his bed, he sighed with exasperation as he looked at his boring lit but not bubbling lava lamp.

“I think I bought something that is of no use!” he sadly repeated as he pulled his covers up.  I was beginning to wonder myself if the lamp would work even as I told Aaron that it just needed more time.

No one was happier than me to walk in Aaron’s room the next morning, his coffee in hand, and see the lava lamp bubbling in all its globby glory!!  YAY!!!  Yay for Aaron…yay for me…and a special yay for Derek and Gina, whom I was afraid would have certainly heard all about the lava lamp that was of no use!!

Aaron was happy, happy!  And every day since then, when he returns from his day group, he plugs in the lava lamp, totally enjoying the goopy bubbles in all their various shapes and sizes!

Last night, Aaron went to bed talking about how he was going out to eat lunch the next day with a group from Paradigm – his day group.  There is nothing Aaron loves any more than eating out.  So, this morning I wasn’t too surprised to hear him stirring early.  How early?  Aaron keeps a logbook like this:

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This morning’s time was:

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He had so much to look forward to today!  He was ready to get this show on the road!  He supervised me as I poured his coffee and carried it to his room, then told me he would shower and dress.  I went back to my quiet time desk, but it wasn’t quiet for long.

Aaron was soon standing behind my chair, his shower completed and his impatience growing.

“Mom,” he ordered.  “Take your shower and put your make-up on so it will become 9:00!”

I soon realized that Aaron’s hurried mood wasn’t going to improve until he saw me making some headway concerning my shower and make-up.  But I also realized that Aaron’s eyes were very droopy, and his mood was changing even further from excitement to not feeling so well.  He told me his head hurt, his stomach hurt, and that he felt like he was having a dream.  We’ve learned that this often means a seizure is coming.  Aaron was ready to go back to bed, and sure enough I soon heard on the baby monitor the unmistakable sound of a seizure.

I never like Aaron’s seizures, of course, but I especially detest them when they keep him from doing something that he’s looking forward to so much.  No eating lunch out today for Aaron, I thought.  Bless his heart!

And my heart?  My mama heart takes a beating every time I watch Aaron going through this hard part of his life.  He handles all this much better than I do, thankfully.  But as I looked down at Aaron when I checked on him later, look what was in the background.

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The lava lamp.  Aaron’s lava lamp, that he worried was of no use, was performing perfectly there beside Aaron in his bed.

And it hit me.  How easy it would be for me to wonder about all the why’s of Aaron’s seizures and autism…to even feel like it was all sadness and of no use.  But never, never have I felt such hopeless thoughts.  Even in the changed path of Aaron’s life…changed from what we thought our firstborn son’s life would be…there is the sure hope that only God can give.

You see, knowing and following Christ gives to me and to Gary and to Aaron the same hope that God gave to Jeremiah to share with the Jewish nation centuries ago.

“I know the plans I have for you,” declared the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.”  (Jeremiah 29:11)

I can claim that promise for us and for Aaron today because we know that God!  We know that He has told us in Romans 8:28 that “ALL things work together for good to those that love God, who are the called according to His purpose.”

God doesn’t plan to hurt us!  He plans to work for our good in order to conform us to Christ!  We have a hope in Him and a future beyond anything we can imagine!

So you see, all the tough times and the sadness and the unanswered questions we may have do NOT mean that this life is of no use.  Absolutely not!!  This life is working perfectly, just how God intended, and in that knowledge – in God Himself – I can trust, and I can rest.

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