Category: Adult Autism

The Nightgown

While we’re on the subject of night wear, before I put it to bed, I have another Aaron story to relate.  I’m trying to determine the purpose of sharing this.  I strive, with my blogs, to educate…..encourage…..enlighten…..entertain.  And with this blog, I must say, embarrass.  Myself.  Embarrass myself.

Actually, it was Aaron’s fault.  He did the embarrassing…..as usual.  It’s up to me to do the telling, which can also be embarrassing.

OK, I’ve established that fact.

On the particular night of this story, Aaron and I had gone through his extensive bedtime routine.  Blinds closed…..next day’s clothes laid out……glasses and watch put in their exact place…..shoes side by side in front of his trash can……clock turned so the light is hidden…..backscratcher and hand towel on his chair……stuffed animals in his bed……multiple blankets pulled up just right……pillow perfectly placed……and every wrinkle smoothed out of his covers.  Every.  Single.  Wrinkle.

I answered all his questions about whether it was going to rain and would I have the baby monitor on and what the temperature was outside.  A hug, a goodnight and I love you, and I was done. 

A short time later, I had my nightgown on and was almost in bed when I heard Aaron call me from his room.  I knew better than to ignore him.  If I ignored him, I would soon hear him thumping up the hall and he would bound into our bedroom and tell me whatever it is he wanted to tell me.  Therefore, I walked down the hall in my normal…..and might I add, modest……nightgown.  I went into Aaron’s room, where he had turned on his lamp, and I listened to whatever it was he wanted to tell me.  I don’t even remember what it was, but it could very well have had to do with aliens or something genetically modified, knowing Aaron.

It only took a minute, max, but it was long enough for Aaron to make an observation.

Fast forward to the next afternoon when he was home from his day group.  He was filling me in on what he had done that day; what he had eaten; and whatever conversations he thought were interesting. 

“Mom,” he finally said.  “I told everyone that last night you came in my bedroom in your underwear.”

I try not to overreact with Aaron.  Too much emotion or reaction can upset him, or anger him, or excite him.  So as calmly as I could, I said……

“WHAT????!!!!!!”

 I proceeded to explain that what I wore last night was a normal, MODEST, nightgown……NOT underwear, for crying out loud.

Aaron was the one who stayed calm.

“Oh,” he said, totally unaffected by my reaction.  “I thought it was your underwear.”  And off he walked, with not a care in the world.  But I cared!!

I spent the rest of the evening wondering what the staff at Paradigm thought about Aaron’s brazen mother.  I told Aaron the next day to be sure and tell everyone what his mother was REALLY wearing.  And as time went on, it became a funny story that his staff and I laughed at many times. 

I’m sure they never thought for a second that I would do such a thing. 

Right?

 

 

Choosing My Focus

I had my day all planned today, my to-do list made, and the order of that list firmly in my head.  Take Aaron to Paradigm, then the post office, return an item to Gordman’s, stop at the Vintage store to ask about milk paint, run quickly into Dillon’s, probably get gas, home for a quick lunch and indoor straightening, and then outside into this upcoming warm afternoon where I was looking forward to some leaf raking out of our drainage ditches and picking up branches and maybe pine cones and cleaning off the front porch and vacuuming out the van……whew!…..and pick up Aaron and home to make supper and then Wheel of Fortune and ironing and then bedtime before I know it. 

There.

What I wanted to get done today is based on what I need to get done tomorrow, and the next day, and the next.  We all know how that is.  None of these errands is life changing, by any means, so if they don’t get done today it’s really not a huge deal. 

And they won’t get done today, at least most of them won’t.  Poor Aaron had a night of hard seizures, so he’s having a day today of sleep along with a terrible headache……and the possibility of more seizures, so I won’t stray too far from him today.  My to-do list pales in comparison to what he endures, and to how I hurt for him. 

I’m extremely blessed in many ways and I recognize that.  Gary’s job allows me to stay at home with Aaron.  Gary is a faithful, hard worker.  Aaron’s seizure clusters don’t happen daily, so he has many days where he feels good and is able to participate in life.   And my greatest blessing?  That I know God and I know that He is in control of our lives, including Aaron’s life. 

Aaron came downstairs this morning, took his morning pills and some Ibuprofen for his terrible headache, and then lay back down on the couch with his soft pillow and his favorite fuzzy blanket and a trash can close by in case he needs to throw up.  And as I listened to him breathing in sleep, I thought that this…..

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This hard thing…..is what has continually over time drawn me ever closer to God.

If all I see, though, is Aaron and this sadness, then my faith will falter.  But I have learned to look beyond the seizures…..the sadness for my son…..the pain…..and to look at God. 

God….Who has a plan.  I read in Psalm 25 this morning, and was so filled with joy.  “O Lord, I give my life to You.  I trust in You, my God!  The Lord is good and does what is right.”  And other verses this morning that confirmed to me that the very thing that causes me the most heartache is the thing that also deepens my walk with God.  God does what is right, even when to me it seems far less than right.

It’s all in where I choose to put my focus.

Then my friend, Jill, posted an article on Desiring God…..an article on intimacy with God, written by Jon Bloom.  It was excellent!  And this statement in the last paragraph says it perfectly:  “Intimacy with God often occurs in the places where we must trust Him most.”

Yes!!  Lying on my couch is my son whom I dearly love, and whom I dearly wish could live a normal life, but God has not willed that to be the case.  But in that pain of my mother heart has grown a deep trust in God, learned over time and in the hard, broken places.

I’m reading “Faith of Our Father” by Dale Ralph Davis, and is it ever good!  Today I read about Abraham and his faith, but how faith isn’t always a piece of cake in the long term.  Our faith can waver, so that’s why we need to keep our eyes on the One in Whom our faith rests.  Davis says, “….if the object of faith is what matters, then don’t be overly worried about faith itself, wondering how much you have, anxious about the ‘amount’ of faith.” 

I’ve heard people say, “Well, God didn’t answer my prayers.  Was my faith not strong enough?”  No, no!  The strength of our faith has nothing to do with us but everything to do with the God that we trust.  He is the strong one!  And He DOES always answer prayer.  It’s just that sometimes the answer isn’t what we wanted, so we tend to think that He hasn’t answered.  In reality, what we’re thinking is that we just didn’t get our way.

I love Davis’ prayer at the end of this chapter I read today:  “We give thanks, O Lord, for the trouble you take to help us go on believing.  Teach us not to fret over the intensity of our faith, but convince us that even a weak faith may lay hold of a strong Christ.  Amen.”

Amen, indeed!

My faith can on some days be weak.  If I just look at Aaron…..his seizures……his autism and behaviors……his here and now…..and his future – then I can most definitely falter.  But like Davis said, may my weak faith lay hold of a strong Christ!! 

I’m not a super parent, but I do have a super God!

And the more I trust Him, the more my faith grows. 

The impossibly hard times are times rich with learning, if we but let go of our pain and place our focus on God, Who loves us more than we can know.  When I open my hand and place it in God’s hand, then I have also let go of the pain that I sometimes hold too close. 

“Bible faith looks away from itself to the One Who promises and finds rest there.”  (Davis)

I can be thankful that God took my to-do list and added the most important thing to be done, at the very top of the list. 

Trust Him and rest in Him. 

And to be here for my Aaron…..this son that has taught me so much, even when he doesn’t know it. 

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Taking the Bags Out

We’ve been very encouraged lately to see Aaron in mostly good moods at his day group, Paradigm.  He had some very discouraging struggles over the last few months of 2016, but now it’s like he’s turned over a new leaf.  We certainly pray that it lasts.  Perfection?  No, of course not, but he’s been far happier than he’s been in a long time. 

Honestly, one reason may be that we did reluctantly increase one of his drugs he takes for his autistic behaviors.  I think it has helped to calm him.  With this increased calmness, then, has come the ability to relate better to the people in his surroundings. 

Aaron loves helping.  He would rather be out somewhere helping with shopping or errands at his day group than to go on most of their activities.  The smaller group is more suited to Aaron, but the helping itself also does something for his ego, too…..in a positive way. 

We’ve been praising him for helping Amy, who works at Paradigm, with shopping at Sam’s or WalMart for Paradigm supplies.  We praise him for helping Brandy or Barb with work at one of the Paradigm residential settings.  Aaron, like any of us, thrives when he is commended.  And for all of us, it’s wonderful to be praising Aaron rather than to be fussing at Aaron. 

His personal relationships with Paradigm clients have been mostly better lately, as well.  Take his friend, A, for instance.  She is usually Aaron’s nemesis, and he hers. There is much bad blood between them.  But this week Aaron had a taco that came with his meal from Taco Bueno……and he gave it to A!!  Today Barb sent me a picture of Aaron hugging A!!! 

All which goes to show that when Aaron is happy, everybody is happy!

Getting Aaron happy, though, can be tricky.

And there’s something else.  Getting Aaron happy first thing in the morning can be virtually impossible.  That’s why this morning was such a shock, and worthy of a blog.

It started last night, when Aaron saw me carrying two pink AMVETS donation bags down to our guest bedroom.  He asked what I was doing, so I told him that I was preparing donation bags for AMVETS. 

“I’ll carry them out for you!” he enthusiastically offered.  But I thanked him and then told him that I wouldn’t be taking the bags out until morning.

“What time are you taking them out?” he asked.

“I don’t know,” I answered.  “Just sometime in the morning.”

Aaron lingered. 

“What time?” he asked again.

“I don’t know an exact time,” I replied, knowing how Aaron loves exact times.

More lingering.

“What time?” he patiently repeated.

I knew that Aaron would need an exact time or he would go to bed still asking me what time I was carrying AMVET bags outside!!

“OK,” I said.  “Probably around 7:45.”

“So, 7:45,” Aaron confirmed.

“Well, maybe not EXACTLY 7:45,” I said, “but sometime around there.”

I was sitting at the kitchen table this morning.  7:45 had come and gone.  I hadn’t taken the bags out yet.  I heard Aaron on the monitor, up in his bedroom, stirring and then getting out of bed.  Before long, he came down the stairs and into the kitchen.  I looked up and saw right away that he had put on his tennis shoes, still wearing his pajamas, and I knew right away why.

“Mom?” he asked first thing.  “Have you taken the bags out?”

“No,” I said with a smile.  “But let’s do it right now.”

Aaron, who usually isn’t very chipper in the mornings and likes to talk about how he doesn’t feel well, turned and put on his jacket.  Then he followed me happily to the guest bedroom, took two bags, and carried them out to the end of the driveway.  He came back and carried a small table out for me.  Then we were done and Aaron went about the rest of his morning. 

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I was pretty amazed.  I thanked Aaron, but not in a way that was too exuberant.  Aaron doesn’t like excessive exuberance.  He can be excessively exuberant, but no one else usually can.  We’ve learned this about Aaron.

I’m a realist, born of experience with Aaron. But I am, at the moment, a very happy realist.  I pray that Aaron continues down this helpful path, learning how much fun it is to be needed.  We all love being needed, don’t we?

Aaron really is no different than the rest of us, despite his glaring differences that at times show outwardly.  His heart desires praise and love and usefulness, just like mine.

He also desires…..eating out. 

I think I’m seeing a Friday night plan taking shape.   

I’m Trying to Go HAPPY!!

Aaron and I sat down to play Skip-Bo the other night.  It’s a familiar nighttime routine for us on many days, this game of Skip-Bo.  As Aaron came to the table, I saw that he was carrying two bowls.  One was empty, and the other was full of Tootsie Rolls.  These Tootsie Rolls had been a sweet surprise from our friends, Jim and Joyce, this past Sunday.  Aaron was very happy to have been given such a huge bag of Tootsie Rolls, trust me!

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As we sat down to play Skip-Bo, while I was shuffling the cards, Aaron began unwrapping a Tootsie Roll.  He carefully took off the wrapper, and I then learned the purpose of his second bowl, the empty one.  He placed the Tootsie Roll wrapper into the empty bowl.  Soon he was ready for his second piece of candy, so he once again pulled on the wrapped Tootsie Roll, removed the paper, and carefully placed it alongside the first wrapper in the proper bowl. 

If there was ever a picture of how Aaron organizes his life, it would be in his use of multiple bowls.  I have blogged about this in the past, especially this piece from a few years ago.  It so fully explains Aaron’s use of bowls.  Put That in a Bowl!!

So as I watched him eat his Tootsie Rolls while we played Skip-Bo, I was once again reminded of how Aaron wants……no, he needs……his life to be just a certain way.  We all do that to some extent, but for an individual with autism, those needs are ever more acute.  The smallest disruption in routine and expectations can totally pull the rug out from under Aaron. 

Providing some fluctuations in his day and in his life can actually be very good for Aaron.  Finding the balance, though, is tricky.  Giving him consistency while also guiding him through changes can be very challenging for him, and definitely so for all of us who are a part of his life.

The staff at Paradigm can most assuredly attest to this fact.  They endure changing Aaron more than anyone.  Aaron can be very up and he can be very down at his day group.  Sometimes we see and know the triggers, and sometimes we don’t.  They have seen the good, the bad, and the ugly from Aaron during his nearly 11 years there. 

Aaron has been home this week with a bad cold.  He totally loves staying at home and would do so every day if we let him.  But like I said, Aaron needs to be away from routine and predictability in order to grow and to thrive.  He has friends at his day group and staff that he loves, but the atmosphere there is active and sometimes loud.  He can’t totally control his environment there……what people say or do……what activity he will participate in that day……how he will feel.  So for Aaron, staying home is much more preferred, but is not at all what he needs to do every day. 

He was well enough to return to Paradigm yesterday, on Friday.  I could tell he didn’t really want to go……didn’t want to think of leaving home for the day.  I was encouraging Aaron to keep a good attitude as I poured his morning coffee under his watchful eye.  He watches to make sure I do the coffee job JUST RIGHT!

“Mom,” he finally said.  “I’m not trying to go MAD!  I’m trying to go HAPPY!”

Wow!  His insights floor me sometimes.

He really wants to process life correctly.  Sometimes, however, it’s just a huge stretch for him to be able to do that. 

For Aaron, it’s Tootsie Rolls in one bowl and Tootsie Roll wrappers in another bowl.

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He can control this business of candy and candy wrappers.  He can’t control, though, his atmosphere at his day group.  Some days it’s just too much.  But we must gently push……must keep trying……must understand how hard it can be for him.

He had a great day yesterday at Paradigm.  They went to watch Rogue One at the theater.  Well, I’m not sure if it was a “great” day, but Katie told me that it was a good day……and to me, that’s great. 

Gary and I had Aaron with us at Sam’s on Monday.  I was checking out the asparagus when Aaron walked up to me with a bouquet of flowers, his face all smiles while Gary watched in the background.  Gary had pointed out the bin of flowers to Aaron, and Aaron instantly wanted to buy me some.  We’ve watched those Iris’s this week, some blooms falling off as they wilt while other buds burst into bloom.

Again, just like Aaron.  We wait for him to grow……hopefully to bloom……and in the mean time we enjoy him and his unique, colorful life that we see every day. 

Candy and wrappers…….buds and blooms……it’s all part of what makes life with Aaron both challenging and beautiful.   

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New Year, Old Ways

A new year is upon us!!  Welcome, 2017!

A fresh start can be so nice.  New everything.  Out with the old, right?  Well, not always, as I have seen on the past two days.  We all know that to be true.

I ended my old year on a most familiar note…..playing SkipBo with Aaron right before bed.  I guess that’s our version of a party, which suits Aaron perfectly as he really does NOT like parties.  Parties have too much noise and emotion for him, thank you very much.  But SkipBo with Mom is orderly, predictable, with nice piles of sequential numbers, and plenty of opportunity to cheat.  Yes, cheat, of which Aaron is a master if not watched closely.

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The next morning, our New Year morning, saw Aaron blandly staring at me as I very happily wished him a Happy New Year!!  His lack of expression at these moments is often hilarious, but I can’t always laugh because he finds that emotional expression irritating or he thinks I am laughing at him.  Which at times I am, but in a good way that he just wouldn’t understand.

Anyway, Aaron’s main concerns on our New Year morning were:

1)      Can I have FOUR cups of coffee?  (Don’t worry.  The cups are half full).

2)      Are there coupons in the newspaper for me to cut?

3)      What time are we going to Chili’s for lunch?

Aaron had opened a gift during our family Christmas Bingo game.  The gift was a Chili’s gift card that was burning a hole in…..well, in my wallet because I don’t dare give Aaron gift cards to keep.  They won’t keep with him.  They will be lost or given away.

I told Aaron that we would go to Chili’s after church.  He wanted to know the exact time, so I gave him my usual ball park figure and he was happy.  He was not so happy with the coupons in the paper for some reason.  Still slow from his cluster of seizures on Friday night, the coupons did not make him show his usual sense of purpose.  However, he settled in on the floor with his coupon trash cans as he sat on his coupon pillow with his coupon scissors…..and his FOUR cups of coffee on the bench nearby…..and he began to clip the coupons, very slowly.

I was in the bathroom later when Aaron came to the door.  “Mom,” he slowly began.  “I was cutting coupons but there were too much.”

Pause.

“OK,” I responded.

Pause.

“There were too much,” he repeated.

“Yes, there were a lot today,” I replied.

Pause.

“There were too much coupons,” he said again.

Pause.

“There were too much,” he once again asserted when he got no Mom reply.

Pause.  Sigh from me.

“Aaron, just take a break.  You can finish them later,” foolish Mom said.

Pause.

“I ripped them,” Aaron flatly replied.

Pause.  Another sigh from me.

I was following Aaron’s train of thought, one all too familiar.  He didn’t want me to cut those coupons.

“Because you don’t do them right,” he continued.  “You don’t cut them straight on the line like I do.”

He made his exit on that note.  No surprise from me.  It might be a New Year, but we are still living in our old ways…..always, always.

And sure enough, there on the family room floor lay his unfinished little stack of coupons……ripped, just like he said.  Aaron’s thinking has always been this…..that if he can’t cut the coupons, NO ONE will cut the coupons.  Especially Mom, who is a dismal failure at coupon cutting.

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Those ripped coupons were a stark reminder to me that just under the surface with Aaron there is always that issue of how he handles stress in his life.  He reacts, and often his reactions are very inappropriate.  His behaviors are a huge concern to us.  So I stood there being reminded that we were on our first day of a brand New Year, brand new beginnings, brand new opportunities……and here we were, being slapped into our old reality of life with Aaron.

Some things just never change.  We know that.

But there were other reminders of wonderful things that never change, either.  Gary and I finally got to church on time.  Yes, we were one of THOSE people who totally didn’t see the memo on the changed time for church……one of THOSE people who didn’t give New Year’s Day a second thought…..and so on this New Year’s morning we drove to church TWICE.  And we laughed at ourselves.  We’re HOW old?!

Anyway, we walked into church to the hugs and handshakes of sweet friends.  And there was Joyce, who handed me a bag containing a huge bag full of Tootsie Rolls…..for Aaron, because of my recent Tootsie Roll blog.  How unexpected and sweet, in more ways than one!  Later, Aaron was also surprised and full of smiles at this kind gift.

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The care of friends is unchanging in our lives.  Such a blessing!

The worship and the message on our New Year’s morning was encouraging and challenging.  And we sang one of my most favorite songs – Great is Thy Faithfulness.  What a wonderful reminder of God’s unchanging faithfulness in our lives!

And later, as we sat with Aaron at Chili’s, Gary and I watched him ever so slowly eat his enchilada lunch and his salad.  His joy at eating out was very evident.  Never changing, his love of restaurant food!  And seeing that joy is always fun for us, despite our constant reminders to him that he doesn’t need to take 17 toothpicks…..don’t stare at the other people and their food……don’t make noises…..don’t clap…..please don’t loudly stretch when you get out of the booth.

Never changing.

I was able to salvage a few coupons later from the ripped pages.  I didn’t let Aaron see me as I quickly cut them out behind his back.  And I know that we will continue to try to salvage good out of the bad days that Aaron will surely have this year.  It’s our reality with Aaron, New Year or not.

But through it all I know, like that favorite old hymn says, that God will remain the same, too.  Faithful to us, as always.

 

            Great is Thy faithfulness, O God my Father,

            There is no shadow of turning with Thee;

            Thou changest not, Thy compassions they fail not;

            As Thou hast been, Thou forever wilt be.

 

            Great is Thy faithfulness!  Great is Thy faithfulness!

            Morning by morning new mercies I see.

            All I have needed, Thy hand hath provided.

            Great is Thy faithfulness, Lord unto me.

 

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My Priceless New Year’s Gift

I was sitting by our Christmas tree this morning, knowing this is the last time I’ll be enjoying its soft beauty this year.  And it hit me.  Everything I do today will be the last time I do “that” this year, because tomorrow is a whole new year!  My brain, fuzzy from another long seizure night with Aaron and waiting for my first cup of coffee to kick in, tried to wrap itself around that fact.  2017 is almost here!

I’m not really as excited as that exclamation point may indicate.  I mean, a new year is always pretty cool to think about.  But life has a way of pulling us back to reality, especially as we get older, and for me my vision is narrowed to what I have on my plate right now.  I know I need goals, but on days like today, today is about all I can handle.

Up four times with Aaron and once with the dog last night made my reality at that moment very narrow.  It was the tree and the lights…..my coffee…..and the baby monitor beside me as I listened to Aaron after he returned to bed, my ears jumping into alert mode at each change in his breathing.

And one more thing……a word.  The word “grace.”  Sometimes that word may be overused, if that’s possible, and for me may lose its full meaning.  But this morning that word kept going through my tired mind.

Two meanings of this word popped up on my handy phone dictionary app.  They are:

1)      The freely given, unmerited favor and love of God.

2)      The influence or Spirit of God operating in humans to regenerate or strengthen them.

Perhaps my favorite grace passage in the Bible is 2 Corinthians 12:9-10.  I was drawn to that this morning, and though I know it pretty well by heart, I made myself actually walk upstairs to get my Bible.  Really, walking up the stairs took some effort this morning.  I felt like I should copy Aaron, who earlier went up the stairs monkey fashion on all fours, as he often does.

Anyway, Bible in hand, I sat down and opened to these familiar verses.  Paul had been given his “thorn in the flesh,” whatever that was…..and three times he implored God to take it away.  Implored…..past tense.  It seems that Paul was done with asking God to remove it, and was now able to say in the next verse that God “has said,” meaning that there was an ongoing result of God continuing to say these truths to Paul:

“And He has said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’  Most gladly, therefore, I will rather boast about my weaknesses so that the power of Christ may dwell in me.  Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”

One thing I had written beside these verses in my Bible, my memorial stone, was simply:  “Feb. ’92, Aaron.”  That was the terrifying day in Germany, 25 years ago, when Aaron had his first big seizure.  I’ll never forget that Sunday afternoon in our kitchen in military housing…..the terror of him falling backward into my arms…..blood coming from his mouth as he seized and I screamed for Gary……the frantic phone call……the ambulance……the German children’s hospital…..language barriers with doctors…..so much to absorb and to understand and to fear.

But God was there with us bringing His unmistakable peace and calm, due only to His grace.  It had nothing to do with Gary and me being strong, or having a certain personality, or any of that “me” stuff.  I was a momma wreck!  It was totally God pouring out His strength…..His grace…..onto and into me.

So here I was this morning, 25 years later……TWENTY FIVE!!!!…….and God pulled me back to these memorial verses.  Nothing has changed.  Aaron had four hard seizures last night.  God has not taken away this thorn, this reality, this sadness in Aaron’s life and in ours.  But he has, over and over and over again, shown us His grace….His love……His favor…..His strength…..in the middle of our pain and our struggles.

So am I, like Paul, “well content” with this weakness that God has given our Aaron and us?   That phrase means “to take pleasure in.”  Well, no.  I can’t honestly say that I take pleasure in Aaron’s seizures or in his autism.  But I must look beyond all that list of things Paul mentions “taking pleasure in,” and look at those words, “for Christ’s sake.”

For my whole life, really, is to point to Christ.  That’s what following Him is all about, after all.  And if I could handle it all myself, I wouldn’t need Him.  But I DO need Him!!  And therefore, what Paul said is so true.  “When I am weak, then I am strong.”

Strong because God makes me that way, and He makes me that way only because of His grace.  Back to that word again…..grace……the outpouring of His favor and strength upon me.

So I just found my resolve for this new year.  It’s to come back to the realization that I can’t change a thing, but I don’t need to change a thing.  Recognizing my sorrow and my pain isn’t meant to point to me and to make me the focus.  It’s to point to Christ and to talk about His grace through it all.

“So that the power of Christ may dwell in me,” Paul said.  That word “dwell” means “to pitch a tent.”  Christ’s power is here for the long term, for me, as I rely on Him and trust Him in the hard times and thank Him through all of it.

His grace is here for all of us who follow Him.  What a priceless gift!  So I close with the words of this old song written by Don Moen, perfect for this new year ahead.

 

                     He Giveth More Grace

He giveth more grace as our burdens grow greater,

He sendeth more strength as our labors increase;

To added afflictions He addeth His mercy,

To multiplied trials He multiplies peace.

 

When we have exhausted our store of endurance,

When our strength has failed ere the day is half done,

When we reach the end of our hoarded resources

Our Father’s full giving is only begun.

 

His love has no limits, His grace has no measure,

His power no boundary known unto men;

For out of His infinite riches in Jesus

He giveth, and giveth, and giveth again.

 

His grace is such a gift!  And so is our Aaron.

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You Want Me Gone?

The other night, Aaron kept coming in our bedroom after we had gone through his bedtime routine and said our goodnights.  Gary was already trying to go to sleep, and I wanted to do the same.  But Aaron kept opening our bedroom door and then softly knocking on our closed bathroom door……as softly as Aaron knocks, which is about as softly as he whispers……which is not much. 

“AARON!!” I hissed.  “Why are you in our room?” 

“I just wondered if you’re gonna have the monitor on,” he said.

“I’ve already told you I’ll have the monitor on,” I replied.   “Now go to bed!”

Not long after, it happened again.  Just repeat the above scenario, but this time Aaron said, “I just wondered if it’s going to rain tonight.”

I told him it was not going to rain…..and to go to bed, as I escorted him to our door, which I soundly closed.

Take three.

Same thing, except now he stood in the bathroom with me saying, “I just thought I could talk to you while you get ready for bed.”

The Mom look I gave him was all he needed, but still he just had to ask one more question.

“Are you SURE you want me gone?”

I assured him that I was sure as I yet again walked him to the bedroom door, closed it with one last goodnight……and locked it!

It’s been a rough couple of weeks with Aaron.  Both his seizures and his behaviors have escalated…..seizures at home, behaviors at his day group, Paradigm.  Another bad report this past Monday just took all the wind out of me.  Gary and I feel like nothing is working, but something has to make a difference.  We saw his caregiver at the Epilepsy Center this week, had labs drawn, will see his autism doctor before long, talked to friends who travel this road, are researching some options……and praying.  Praying a lot.

I was so thankful for the verse that God gave me this week.  The portion that meant so much to me was this phrase: 

“DO NOT HIDE YOUR EAR FROM MY PRAYER FOR RELIEF.”  (Lamentations 3:56)

It’s like that old story of the guy up in the tree with a coon, telling his friend on the ground, “Just shoot up her amongst us!  One of us gotta have some relief!!” 

It’s funny to hear that story…..not so funny to live with Aaron when he has so many behavior struggles that are severely impacting his happiness.  But all of us need some relief, Aaron included.

When he and I got home on Monday, after such a dismal report from his day group staff, Aaron went to his room.  Soon he walked up to me and handed me one of his sticky notes.  Here is what he had written:

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Bless his heart.  He really wants to do better, but finding that better is very difficult for him in certain circumstances.  Really impossible at times, as his Epilepsy nurse and practitioner discussed with me on Wednesday. 

That verse God gave me early in the week was perfect.  We need relief, as many believers through the ages have expressed, and as many of my friends are experiencing now in their lives in very serious ways.  The book of Lamentations is all about God’s faithfulness throughout the stresses and calamities of life on this earth.  In fact, the following verse after the author begs God to not hide His ear, says, “You came near when I called on You; You said, Do not fear!”

Good advice…..great promises!!

The day after these verses spoke so much to me….the day after Aaron’s bad day at Paradigm…..this happened.  I was out with my little elderly friend, Nora, when I got a text.  This text was from my friend in Texas, Dona, whose husband had a terrible stroke 11 months ago.  Dona and I rarely text, so I was surprised and a little alarmed to see her name appear.  I instantly thought it might be about her husband, Steve.

But all Dona said was, “Are you doing OK?”

Wow!!

She had totally, absolutely no way of knowing what I was dealing with.  We briefly texted, with her telling me that I had just been on her heart and mind.  God at work, without a doubt.

I could hardly wait to get home and call her.  We talked for quite awhile.  She told me again that she kept thinking about me and so she prayed.  I love it when God does these things!  He shows His love and His care in these amazing, wonderful ways, blessing all of us in the process.

A day or two later, Aaron and I were in Dillon’s.  We bought our few items, and then the cashier pointed to a large container of roses at the end of the conveyer belt. 

“Would you like a free rose?” she asked.

And Aaron jumped on that like a flea on a dog!!  He took a rose and then handed it to me, his face nothing but a huge grin.

“Here, MOM!”  he boomed.  “I want to give you a rose!!  Because I love you!!”

And with that, he gave me the biggest hug!  I thought my heart would explode!

The love note…..the rose……the hug. 

Mixed this week with the behaviors…..some scary seizures…..doctor visits…..decisions looming.

It’s like Aaron bounding in our room at bedtime, just when we think that he’s settling in for the night.  BAM!!  There he is again, full of talk and excitement, no matter how tired we are. 

“Are you sure you want me gone?” he asks.  No, Aaron, not gone…..but resting.  Go rest, and let us do the same.

His behaviors can be so very tiring.  This past week has been emotionally exhausting for us, as well as physically.  We could use some relief.

But we don’t want Aaron gone…..his personality and his take on life’s events to be gone.  We just want him to be happy, and to know how to behave in a way that makes others happy, too.  We have to keep working on that, and to keep trying to enable him to achieve that.

We’re praying for God to give us wisdom, and to not hide His ear from our cry for relief.  I know He’s listening…..I know He cares……I know He’ll answer.  He’s already impressed others to pray for us.  That’s such an encouragement!

And when I look at my lone little rose in its vase, I’m reminded of Aaron’s love and of God’s love, entwined in many ways in my life.  One so often shows me the other. 

I just have to be making an effort to look sometimes. 

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My View

I was in TJ Maxx with my elderly friend, Nora, last Wednesday when I got a call from Paradigm, Aaron’s day group.  I was tempted not to answer it, figuring it was Aaron just wanting to tell me about his day.  That could wait.  But I wasn’t sure, so I did answer and I immediately knew that the news was not good.  Aaron was on the other end, his voice thick and choked with anger and tears.  Here we go, yet again, I thought.  How I wish that Aaron could stay happy!

I picked him up as soon as I got Nora settled back at her apartment.  Aaron was asleep, so I had time to talk to the staff, all of us scratching our heads as to what caused his angry outburst that morning……and what the solution could be.  I found out from Aaron later what happened.  He tried to give his good friend two McDonald’s coupons and she didn’t want them.  She wasn’t being mean to Aaron, just honest, but Aaron felt rejected and very hurt, so he just had a total meltdown. 

Thursday was a better day for Aaron.  Then came Friday…..

I told Aaron that we would go out to eat when I picked him up at the end of his day.  His choice.  So he chose Denny’s, of course.  He does love Denny’s.  On the way to Paradigm, I talked to him about being nice…..being kind with both his words and his hands.  About talking to someone if he was angry or hurt.  He agreed with everything I said……until he walked into Paradigm.

I was waiting in the van after I dropped him off, waiting for him to come and tell me if they were going to a movie.  But instead, out the door came one of his staff.  She told me that Aaron had become verbal instantly with another client when he walked in the door.  Then out came Aaron, yelling at this staff as he stood on the sidewalk.  He eventually got in the van and off we drove.  My anger and disappointment and great frustration spilled out in harsh words as we drove toward home.  I was so mad at Aaron and mad at myself for being mad, and it just all boiled over. 

I pulled into Denny’s, deciding that it might do us both good to be in a neutral place.  Aaron sat on the curb before going in, saying that maybe he just shouldn’t go in to eat.  I told him to come on and he did, but for most of the meal I just sat silent.  I was exhausted and defeated and still battling my anger.  Aaron was scared……scared because of all the people from whom he fears rejection, he fears it the most from me.  He kept telling me that he loved me……kept trying to share his salad with me…..his crackers, French fries, chicken strips……even reached over, took my hand, and kissed the back of my hand.  Yes, he really did that.  I wonder who saw it, and what they thought of my lack of emotion? 

We ran into WalMart after our meal, where I picked up food for Thanksgiving bags for church, and Aaron tried to help.  I still felt numb, tired.  After I checked out, I looked toward the bench where Aaron was sitting, and this is what I saw.

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Then my heart did stir with sorrow for Aaron as this picture of him was a picture of dejection, and his own tiredness.  Oh Aaron, how I wish your life wasn’t so difficult and hard!  And how I wish you could understand that you so often make it that way, and yet so often you can’t control the impulses you have that make you make it that way.  It’s so complicated!

Aaron went right to bed when we got home.  I went to the patio, baby monitor and my Bible in hand.  I could listen for seizures while I spent some time unwinding and processing……reading my Bible and praying.  I could hear Aaron’s steady breathing on the monitor as I breathed out my prayer to God, asking Him for wisdom to know how to deal with these constant ups and downs from Aaron. 

I called my friend, Wendy, who walks this road that I walk.  She understands and doesn’t judge.  She offers counsel and advice, empathy and understanding.  And I know that she prays for us, for Aaron……prays with love and care.

Aaron was awake then, coming outside to test the waters……to see if Mom was still distant and angry.  He relaxed some when he could tell that I was better.  He smiled when I said that we could take Jackson for a walk around the yard.

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We walked down to the back of our yard, around the huge evergreens that hide the very back loop of our property.  It’s an area that is hidden from view as you stand on our patio or look out our windows.  You would never know it’s there until you walk behind the thick trees that keep it hidden.

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I stood looking at the eerie sight.  Branches of the old trees there hang low, gnarled together as they bend toward the ground.  A finger of the neighborhood lake curls around under the limbs, still holding water since we’ve had such a wet summer.  It’s a shadowy and dark place, a little creepy even.  It’s interesting, but not warm and welcoming……not a place I want to linger for long. 

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As we stood there, Aaron talking and Jackson sniffing the bushes and tall grass, it hit me that this is so much like our life with Aaron.  Anyone who lives with a person who has autism…..or multiple seizures…..and takes tons of meds to help them…..knows what I mean. 

Aaron is funny and smart and often kind.  But he is also prone to angry outbursts where he is hurtful and unreasonable.  For days we may mostly see the pleasant side of Aaron, but we know that hidden inside him is still the anger and the frustration that he feels, and sometimes releases.  It is not a fun place, and it is not a place where we desire to linger.  Yet sometimes Aaron makes us linger there as his brain is going through whatever his brain goes through at those times. 

I know that mentally and emotionally I must walk away from the shadows that threaten to engulf me when I am overwhelmed by Aaron’s behaviors.  He needs me, for one thing.  And I need to stay whole and strong, loving and forgiving.  It’s not easy, but I must.  Friends and family help.  A good staff at Paradigm helps.  Gary is my biggest help, taking over when I can’t.  And definitely, crying out to God helps the most. 

Aaron and I turned from that scene, finally, and went back out into the open yard…..to the sunshine and grass……to the full view of our welcoming house.  Likewise, given a little time, he and I returned to our normal relationship.  I love him dearly.  I know he needs me.  He needed me when he had three hard seizures during the night on Friday.  But he also needed me even more when he was out of control emotionally that day.  He needed me to believe in him…..to discipline him……to try to help him even when he pushes me away……to care for him and to love him.

Behaviors are perhaps the hardest part of Aaron’s disability.  They are frustrating, embarrassing, and exhausting at times.  Families who deal with this need extra love and prayer.  Staff who deal with this need the same, as well as frequent thank-you’s for what they endure. 

Aaron’s behaviors hold him back in many ways…..and could easily hold us hostage in many ways, as well.  But Gary and I know that we can’t let the dark times be our focus.  Like the staff at Paradigm says, today is a new day and we start all over.

We don’t always get to choose our view on any given day, but we don’t have to stay forever where the view is scary and dark.

“Today is the day that the Lord has made!  Let us rejoice and be glad in it!”  (Psalm 118:24)

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I’ll Go Happy

Last Monday, Aaron had a rough and grouchy day at his day group.  Sometimes we can pinpoint the cause and other times we just can’t.  I’m so thankful for the understanding staff at Paradigm.  I don’t know how they do what they do on some days, but I do know that they don’t get paid enough for all they endure on those days.  I love their philosophy:  Tomorrow is a new day and we start all over.

As I said goodnight to Aaron at the end of his rough day and gave him a hug, Aaron said, “Mom, tomorrow I’ll go happy!”

So on the next day, the new day in which we were starting all over, Aaron was indeed happy.  His attitude was entirely different than the no good very bad yesterday.  And on this better day we also got some wonderful news from our daughter in Houston.  She has a break between jobs and was coming home for a visit!!!!  Not only Andrea was coming, but also her boyfriend Kyle!!!!  Not only Andrea and Kyle were coming, but also Andrea’s two dogs and Kyle’s dog!!!!!   

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Can you tell I was excited?  You bet!  Aaron was excited, too.  He loves and misses his sister.  He’s getting to know Kyle and to realize that Kyle is a new part of our family.  But oh, I know Aaron and I know that having a house full of people and pets can be challenging for him.  We face this issue any time that we have extra people around…..extra noise……extra routine disruptions……extra attention grabbers away from our usual main attention grabber.

We work to prepare Aaron for those disruptions before they occur.  I went over several things with him, like how he would use Gary’s and my bathroom while Andrea and Kyle were here.  We talked about the dogs and how we need to act with having four dogs in the house.  I tried to cover all the bases with Aaron, but Aaron brings out new bases quite often……based on what’s happening around him at the time…..things we just can’t predict. 

I let Aaron stay home from Paradigm on the two Paradigm days that Andrea and Kyle were here.  Aaron was SO happy with that idea!!  He loved going with us to eat lunch at Freddy’s.

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He loved going for a walk in Swanson Park.

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He loved being here with us and the doggies.

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He loved us watching Independence Day Resurgence with him while he ate snacks and snacks and snacks.

He loved trying to sneak snacks and snacks and snacks to the doggies.

He loved talking to all of us, especially to Andrea and Kyle, about all his favorite topics.  And this is where we usually start seeing some issues with Aaron, because Aaron doesn’t know when to stop talking.  Sharing the stage is hard for Aaron.  He truly wants to be included in our conversations as we sit around the dinner table, for instance.  We do listen to him and try to include him, but Aaron isn’t going to talk about the subjects that we talk about. 

Here is a sample conversation:  We may be talking about Andrea’s new job or talking about Kyle’s summer at sea.  Then Aaron will loudly call one of our names.

“Andrea!!”  he says.  When she responds to him, we often hear this from Aaron:  “Ummm.  Ummm.  Ummm.”  We wait.  “Ummm.  Did you know what the Queen Alien on Independence Day Resurgence looks like?!”

“No, Aaron, I don’t know what she looks like,” Andrea answers.

“Well, she looks like a…..I don’t know.  Mom, what do you think she looks like?” Aaron asks.

So I try to answer but I don’t really know how to describe the Alien Queen because it’s been awhile since I saw that movie….and I don’t really care what the Alien Queen looks like…..and in trying to muster some enthusiasm and interest in this question that I’ve heard a hundred times, Aaron can sense a shift in my emotions.  As much as Aaron struggles with social norms, he is very adept at picking up the subtle cues that we are not as animated about Alien Queens as we are about Andrea’s job or Kyle’s schooling. 

He views our world from afar, wanting so much to enter in, but never knowing how.  But he does express his frustration by comments that we later hear.

“Mom, you didn’t want to talk to me.  You just wanted to talk to Andrea or Kyle,” he will say. 

I try to explain that we do want to talk to him but that we haven’t seen Andrea or Kyle in so long…..and we want to catch up with them on their lives…..but to Aaron that doesn’t make sense.  Round and round we go, and where we land nobody knows.  Or when we land.

Which happened on Friday during supper.  Andrea’s friend, Sarah, had come over to see Andrea and Kyle.  They sat in the family room visiting and talking and laughing.  Aaron was up in his room, then down in the family room…..up in his room, down again.  He wanted to be a part and he was in many ways.  He just can’t be the whole part and so conversation would swirl around him.  Kyle was talking and laughing at one point, and Aaron whacked Kyle’s leg with a book.  I heard it but didn’t see it.  It was a sign of things to come.  Aaron was frustrated now, truly frustrated, and when that happens he picks a target.  Lucky Kyle.

I don’t remember all the details of what happened at supper.  I was up from the table getting slices of cheesecake ready to serve.  Aaron was at a boiling point and we didn’t realize it.  His system was on overload…..his pressure gauge was maxed out…..and he erupted.  He leaned forward and yelled at Kyle. 

Aaron left the table.  We apologized to Kyle.  He was understanding and patient.  Aaron came down later and apologized.  We watched the movie later and Aaron was very happy, as if nothing ever happened.

Why do I tell you this story, one you’ve heard before if you’ve read this blog for very long?  Because this scenario is just a very real picture of how Aaron processes…..or doesn’t exactly process…..the world around him.  Our world is ticking along like normal, but Aaron’s isn’t.  He is so impacted by nuances that we don’t even notice.  Sounds…..loud laughter that he doesn’t understand…..hilarity……silliness…..his routine changing….   All these things greatly affect him, more than we can begin to know. 

So he reacts, usually loudly and hurtfully.  Then he’s sorry.  It takes great understanding, as I’ve said, to deal with this about Aaron.  He doesn’t think like we do or process as we do or react over time as we do. 

But he truly wants to. 

Andrea and Kyle left to go back to Houston the next day.  Aaron was with us in the driveway, entering into things, when Andrea asked for a hug.  Aaron ducked his head and walked away, through the garage and into the house as he muttered to himself.  A hug in front of everyone?  Are you kidding me?!  We know this about Aaron and it makes us smile.  He can yell, but spontaneous hugs are very, very difficult.

One of the first things I did after they left was to get Aaron’s things put back in his bathroom.  “Us kid’s bathroom,” he calls it.  We got his cup with his toothbrush and toothpaste put back on the counter.  We got his body wash and wash cloth back in the shower.  We hung his towel on the towel rack. 

Aaron then noticed that his razor attachments were not in the correct place.  He rearranged them the way he wanted them.  He stood back and observed the counter for a few seconds. 

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Then he said, “OK.  It’s looking good.”

That night at supper, Aaron asked the blessing.  He nearly always says two things when he prays.  He doesn’t say the same thing with each prayer, but he says two things.  On that night he said, “Lord, thank you for the food.  And thank you that Kyle and Andrea got to come.”

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Yes, it was looking good now for Aaron.  He was happy that Andrea and Kyle were here, along with Darcy and Oakley and Aries and our own Jackson.  He will be very happy when everyone comes for Christmas. 

Aaron will have every intention of saying, “I’ll go happy!” 

He’ll go happy into our family time, but it will be a time of upheaval for him and of struggle as well.  It’s up to us to understand that and to allow that for Aaron, all the while trying to help him know how to take time to decompress and not to blow up. 

Only when things are back to normal…..Aaron’s normal…..will he be able to step back and say, “OK.  It’s looking good.”

And it’s very important for us to be able to look at Aaron’s world through Aaron’s eyes, and still be able to say, “OK, Aaron.  It’s looking good.”

Let’s go happy!  It’s sometimes the hard choice, but always the best choice. 

Pass The Kleenex

Aaron has just recovered from a nasty virus.  It was nasty in more ways than one.  He felt terrible.  He had a stuffy head.  He had a sore throat.  He ran a fever.  He had some seizures.  All of this is definitely nasty.  But there is another level of nasty with Aaron when he has a cold……a level that I have written about in the past.

Aaron would not blow his nose.  We’re not totally sure why he won’t blow his nose, but he just refuses.  Therefore, as I wrote before, Aaron snorts.  It’s very disgusting and annoying.  Nasty.  For me, for Gary, and for anyone else within hearing distance.

I told Aaron over and over how much better he would feel if he blew his nose.  I finally resorted to telling Aaron over and over how much better his dad and I would feel if he blew his nose.  Aaron wasn’t particularly interested in how we felt, however, so the snorting continued.  He wasn’t even interested in the fact that blowing would help HIM feel better.

Until finally, one day, my words got through to Aaron’s stuffed up head.  He blew his nose.  He actually, for real, blew his nose.  I praised and praised him as if he was a small child who had just gone potty for the first time.  He looked at me as if I was an irritating gnat, so I backed off the vibrant praise and tried to be very flat and factual, which Aaron much prefers.

“Good job, Aaron,” I said with a level voice.  “Doesn’t that feel better?”

“Yeah,” he said as he walked away.

The next time he blew his nose, I asked to see the Kleenex.  He knew then that I had surely lost my mind, but I told him that the color of the mucus could tell us if he had an infection.

Sorry for being gross.

But Aaron held out the Kleenex very gingerly and I peeked at it, made a comment…..we don’t need details……and off Aaron went.

Aaron marked that information down, though, as a way to keep reminding us that he wasn’t feeling well.  When he’s sick, we hear over and over the same four word comment from him:  “I’m not feeling well.”

“Mom!” he said soon after the mucus color test.  “I blew my nose and it was GREEN!!  That’s how I’m not feeling well!”

I wanted to tell him that’s how I’M not feeling well now!

I heard a lot from that point on about green nose stuff.  We were still in a nasty mode, but at least it was in a Kleenex now.

Speaking of……Aaron did with his nose blowing what he does with everything in his life.  He developed his own way of doing this task.

He had to have a box of Kleenex with him at all times.  Not a few Kleenex, but a box.  A box at his desk.  A box on the end table beside his TV chair.  A box on the kitchen table while we played Skip-Bo.  A box on the nightstand beside his bed at night.

And not only a box of Kleenex.  He also had to have a trash can in which to place the dirty Kleenexes after blowing.  And not just any trash can.  It had to be his trash can from his room.  His trash can beside his desk.  His trash can beside his TV chair.  His trash can beside the kitchen table while we played Skip-Bo.  His trash can beside his bed at night.

When he finally felt better and was able to return to his day group, he was still needing to blow his nose.  By now his nose blowing was routine for him, but also done in just his routine way.  So he told me that he needed to take a box of Kleenex with him to Paradigm on his first morning back.  I agreed, and Aaron was very happy about that, as you can see.

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He marched into Paradigm that morning, box of Kleenex in tow, ready to start his new week.

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“Barb!” he said as he barged into her office.  “I’m blowing my nose!  I brought a box of Kleenex!”

Barb laughed and I explained.  She knows Aaron well enough to understand that this was a big moment for him, and to not question the box of Kleenex.

I was just thankful that Aaron didn’t insist on taking his trash can!

Aaron has blown and blown and blown this past week.  We hope his nose blowing hang ups are a thing of the past.  We definitely hope that his snorting is a thing of the past!!

And once again we just watch as Aaron decides to own something like this…..and to really make it his own, in the unique way that totally suits him.

Gary and I are once again along for the ride, shaking our heads and laughing when Aaron can’t see or hear us.  Even something as mundane as nose blowing becomes a picture of just how unique Aaron is.

Pass the Kleenex.

The BOX!!