Special Needs Adults – Page 18

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.

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.

I Did It My Way

In our Life Group the other night we were talking about the fourth chapter of James. There James tells us that we shouldn’t say we’re going to go here or do this without acknowledging God’s will for us in these things. James reminds his readers to say, “If the Lord wills, I will do this or do that.” We talked about the signature song of Frank Sinatra, I Did It My Way, as being the exact opposite of the attitude that James wants for us.

But my friends, laying aside any spiritual implications, I must say that I have found Aaron’s life song!! How many times in a day could Aaron, with his autistic way of living life, rub his hands together in glee and yell, “I DID IT MY WAY!!!”

Sometimes Aaron’s way is a funny way. Sometimes Aaron’s way is a frustrating way. Sometimes Aaron’s way is a very fascinating way. But it is nearly always HIS WAY!!

One recent evening, Aaron wanted to set the table for supper. I love having Aaron’s help. Aaron knows my first comment will be for him to wash his hands, so here’s how it always goes: “Mom, can I set the table? I already just washed my hands.”

And I’m thinking, “Yeah, like two days ago?” Aaron knows what Mom is thinking so he just turns and heads for the bathroom, returning with clean hands (I hope) and ready to set the table. On this particular evening, when he was all done and had left the kitchen, I stood staring down at his place setting.

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What a perfect picture of Aaron doing things his way! He must always have multiple forks and spoons, no matter what we are eating. I was proud of the precise way that he placed his utensils and napkin on the correct side of the plate and humored by this example of how Aaron thinks deep in that amazing brain of his. Gary and I each had been given one fork and one spoon, but Aaron set his place at the table HIS way.

Gary and I see Aaron doing life Aaron’s way every single day. Let me show you some examples of Aaron’s way.

Look at how Aaron wears his watch way up on his arm. He has always…and will always…wear his watch this way.

Aaron loves this sweater and he wears it every day, even in the summer and even outside in the summer. Plus, the slipper socks!

When I drop Aaron off at his day group, I would always tell him to quit picking up sticks to carry inside to Piper, the resident day group dog. One day I took my eyes off Aaron as he got out of our car to walk into the building. When I looked up, he was limping. I was alarmed, especially because we were getting ready to take a trip out of town. Weird things happen before every trip…things like stitches and staples and ER visits and dental procedures, all involving Aaron. So, I was very worried to see him limping. I texted Barb, and soon she sent me back this picture.

Aaron decided to be sneaky in how he carried sticks into Paradigm to give to Piper! Now, every day, he stops to take off his shoe and place a stick inside…in full view of me and everyone else. 😊

Aaron listens to music CDs as we drive. He loves music, but almost always only as we drive. And if there are multiple CDs, he will listen to them in order of the date they were produced. “Mom,” he said one day, “I listen to them as the years have gone by.”

He also watches the credits after every movie, as intent on the screen as if it was the most exciting part of the movie he just watched.

Watching him clip coupons is very interesting. He cuts as precisely on the dotted line as he can, and then cuts each of those little strips into very small pieces that fill his special trash can. The coupon papers are laid out neatly when he is done, with coupons stacked just right in the coupon box and restaurant coupons kept out separately. If there are good coupons and I buy an extra paper, I hide it from Aaron because he will NOT let me clip coupons. “You don’t do it right, MOM!!” he angrily says. One day he grabbed coupons out of my hand and wadded them up into a ball because he was so angry to think of me cutting them. This is how important it is to Aaron to do these things his way.

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Aaron loves to find items at his day group…even if he must open a drawer to do so…and bringing them home. How many times I’ve made him return many of those pilfered pens and sticky notes and clips and much more! One day he got in the van, reached into the bag he was carrying, and showed me the boy’s bathroom sign. “AARON!!” I exclaimed. “You took the boy’s bathroom sign?!!” But he assured me that Chris let him take it because they put up a new one, and Chris came to the car to confirm to me that this was true, and now Aaron’s bathroom at home has the prized sign on the door!

Aaron crunches mulch outside into a bucket. This is his special way of relaxing.

What’s funny is to watch him at a restaurant that serves peanuts. Here he is yesterday as we ate lunch after his doctor visit, crunching peanut shells just like he does the mulch.

I could go on and on with these examples. You see why I say that I Did It My Way is a very appropriate way to describe Aaron. But I like even better to say that Aaron is really doing his life God’s way. After all, God has fearfully and wonderfully made Aaron just the way he is.

So, yes, Aaron is doing things his way but it’s because God made Aaron HIS way!!

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The Chicken Whisperer

God did the sweetest thing last week and I wanted to share it with all of you. Some of you read my last blog about how Aaron and I went from a very happy almost three days, to having Aaron crash and taking me with him. We went from happy to sad faster than it takes for me to run from a spider…and those of you who know me know that’s FAST!

On Saturday evening, while Aaron and I were happily watching a movie, I got a message from my friend, Summer. She asked if Aaron and I would like to come down to her family’s home in the country to see their chickens. A couple of the hens recently had baby chicks so Summer thought Aaron might like to see them. I eagerly said yes! That sounded like so much fun. The invitation just added to my happy and I was…well…VERY happy!

Our future chicken visit was a bright spot after Aaron’s happy disappeared on Sunday night. I looked forward to it so much…to having something fun to do with Aaron that was out of our norm.

Wednesday, chicken day, finally came. Aaron slept later than anticipated, but at last he and I made it to Summer’s house. How pretty the day was, and how pretty their home was as we pulled into the driveway! I immediately noticed the windmill and thought it was a perfect Kansas scene.

Aaron was a little nervous because he had forgotten meeting Summer, and he had not met her sons, and he wasn’t too sure about meeting the chickens – fun as it sounded. But Summer came right out to meet us, as did Austin and Tyler, and they all put Aaron right at ease. Right away we were standing at their pond, where they tossed out some fish food and up from the water appeared lots of catfish.

Aaron thought that this very cool! And what fun it was when he got to throw some food out in the water as well!

We walked behind the house then, and there were the chickens…and a goose, Paco. As we approached the gate, one of the chickens hopped up right beside Aaron. Aaron petted her, and Summer told Aaron that he was a Chicken Whisperer. 😊

Inside the enclosure, Aaron got to throw some chicken feed on the ground and soon we were surrounded by chickens.

Aaron got to hold a chicken, managing to still hang onto his prized goose feather he had found at the same time.

Then we saw the cute baby chicks under low hanging evergreen trees. Surprisingly, the mama chickens were very tolerant of us being so close to their babies.

Summer was telling us that no one had been able to hold a baby chick yet because of their protective mamas. Just then we turned around and saw this:

“How did you do that, Aaron?” Summer asked.

We laughed, and I wondered if maybe there WAS something to this Chicken Whisperer after all.

Aaron sat in a chair and Summer gently talked to him about how to carefully handle the wee one.

Then one more up close and personal with one of the grown-ups:

And the opportunity to gather some eggs with Austin before it was time to go.

We left there later with a plate of cookies that Summer had made, and with the eggs that Aaron gathered, and with such happy memories just made.

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When we got home later, after eating too much at the Pizza Hut buffet, a thought hit me. I couldn’t remember when exactly Summer had messaged me about coming to see the chickens, so I looked at my messages and there it was. Summer had messaged me, as I said earlier, on Saturday night.

Saturday night…when Aaron and I were still in happy mode. Saturday night…before the sadness of Sunday night. Saturday night…before I knew just HOW much her invitation would mean to us.

I know in my heart that Summer was nudged by God to message me that night. I was excited to receive her offer, but I had no idea what the next night held. I had no idea that I would be wiping away tears of disappointment on Sunday night when on Saturday everything was going so well.

But God knew. God cared about me enough to prompt Summer to invite us down. God knew before I knew…and He knew what Summer didn’t know…and that was this: that He wanted to bless me and give me a hug when I really needed it through the action of one of His children who was listening to Him.

This thought and this seemingly simple action is simply profound to me. God indeed does go before me in ways I sometimes never see, but when I do see it I can only say, “WOW!!”

And to thank God for His sweet care for me, and for Aaron, by using one of His very sweet families.

No action is too small or insignificant to be used by God in a huge way in someone else’s life.

Thank you to Summer, Tyler, and Austin!

And a special thank you to God!

Mom, Don’t Be Sad

Blah! Bleh! However you want to spell it, it’s how I feel right now.

If we’ve learned one thing about Aaron, it’s that we’re always learning about Aaron. The autistic brain, as well as the brain changed by seizures…and let’s not forget the brain impacted by so many meds…is indeed a complex mess at times.

Aaron’s mess often makes me a mess.

I also feel like a Yo-Yo. Up and down…up and down…up and down.

Aaron had a cold last week and was home for a couple days from his day group because of it. On Friday he was out of bed and reluctantly ready for Paradigm when I looked down the hall and realized that he had gone back to bed.

Oh well, I thought. I guess it’s another home day for Aaron. I had a must-do trip down to the air base scheduled, so off I went, minus Aaron. But I was barely down the road when my phone rang, and there was Aaron, out of bed and ready to go to Paradigm. I turned around, picked him up, and off we went – his current CD of choice playing and a smile on his face.

What a relief to me to see him happy!

I told him about the pizza lunch that was scheduled, being careful not to use the word “party,” because Aaron doesn’t care for parties. I definitely didn’t tell him about the planned dance, either, because Aaron not only doesn’t like parties, he REALLY dislikes parties with dancing. It’s all just too much sensory overload for Aaron, despite the fact that Aaron himself causes plenty of sensory overload for those of us who are routinely living in his world. Go figure.

Aaron was still pleasantly happy when we pulled up to Paradigm. He was still happy when he called me later to give me a report on his day. And happy still when I picked him up later…an early pick-up just for fun and so we could make our Friday Wal-Mart shopping trip for weekend treats.

Aaron came to the van looking like this:

Chris, one of the staff, jokingly put some tape on Aaron’s mouth…and I can surely guess why…and Aaron loved it. He wanted to go into Wal-Mart that way, but stuffy mom said no!

Aaron immediately asked me in Wal-Mart if we could buy him an Xbox and I immediately told him no…as always. I reminded him that an Xbox is too expensive to buy for a weekend treat. Aaron asked if he could go to the electronic section to look around since he had no interest in looking at hair spray and make-up, so off he went with a reminder from me to NOT run!

I should have also reminded him to not bother any of the associates since I know that Aaron invariably finds an unsuspecting associate in their blue vest, and invariably asks them questions. Friday was no exception, as Aaron told me later what happened.

“Hey!” Aaron said as he pounced upon said associate. “Do you sell any CHEAP Xboxes?!” 😊 😊

Once home, Aaron helped me carry bags in the house. He helped me make spaghetti for supper. Never mind the broken noodles all over the stove-top. He was trying his best. He helped me make brownies, looking down at the bowl of batter and asking, “Is that the WHOLE brownie?!”

He set the table, took the recycling items to the garage bin, and learned a funny song to sing to Kyle the next day for his birthday. And after supper, he crammed spaghetti in his mouth and mumbled, “Send a picture to Andrea!!”

On Saturday morning, we called Kyle for his birthday and Aaron happily sang his funny song that he had practiced over and over in his monotone voice while on his computer: “Happy Birthday to you! Happy Birthday to you! You look like a monkey. You smell like one, too!”

And Aaron, who is often jealous of his new brother-in-law, rubbed his hands together in delight after he sang his song, and ran upstairs after laughing loudly.

That afternoon, while Gary worked on our extremely frustrating messed-up internet, Aaron and I went for a walk in Swanson Park. We saw beautiful Kansas prairie grasses.

We saw lots of very old, dramatic trees.

Aaron even happily posed for a picture.

But best of all, we got up close and personal with this gorgeous deer.

What a very fun, relaxing afternoon!

We finished the day watching a movie while eating supper, with Aaron totally delighted to eat his egg rolls as he watched a huge volcano erupt.

After church on Sunday, Gary had to get busy on our internet repair again, so Aaron and I scooted down to the grocery store for his favorite Cheddar Pasta Salad…and chicken…and drinks…and then doughnuts at Paradise Donuts down the road. But as the day went on, and especially while I was on the phone with Andrea, I noticed that Aaron’s happy brightness was fading. And after another movie that night, and one of his favorite television DVD shows, I knew that our happy time was over.

I just wish I knew why.

I really wish that Aaron knew why and could talk about it.

Asking Aaron to talk about his feelings or to verbalize his thoughts about these things would be like me asking him to walk up the stairs if he had Cerebral Palsy and was in a wheelchair. That’s how impossible it is.

And even though I kept telling myself that this very happy time would no doubt end, I still realized that deep down I dreamed that maybe it wouldn’t end…that maybe Aaron would see how much fun it is to be happy and compliant, and would want to stay that way.

It was like Aaron crashed. Like he went from being manic to being angry again, for whatever reason. He was just upset for no reason that I could see.

He said he was not taking his pills, but he did. He said he was not taking his CBD oil, but he did. He said he wasn’t going to bed, but he did. He said he wasn’t going to brush his teeth, and he didn’t do that. Of course. 😊

I just shut down, trying to stay flat and unaffected in order to not escalate Aaron’s unhappiness. He noticed my change every bit as much as I noticed his. He didn’t like it and wanted me to be happy even as he was anything but.

“Mom!” he said. “Don’t be sad!”

But if I tried to explain why I was sad he did not want to talk about it or to hear me talking about it…talking about how he had dramatically changed so quickly. No talking allowed. But no sadness, either.

Aaron was worried that I wouldn’t participate in our nightly routine, especially talking to him over the monitor from our bedroom after he was all tucked in his bed.

“Mom?” he asked over the monitor. “Are you going to say goodnight?”

So I did, half- heartedly, and he knew…but he thought that he should just be happy with what we had at that moment. And so did I. But once more before we were done, he said it again.

“Mom, don’t be sad.”

My tears came then when Aaron couldn’t see them. Tears of frustration and sadness. Tears due to the realization of how very much I loved our fun days, without any stress, and how much I wished they could last forever.

And having those happy days, only to have the anger re-emerge, showed me just how stressed I often am. I was so relaxed and content when Aaron was happy, but the instant stress again was a real blow.

Many of you reading this, in your own particular context, know exactly what I mean. The ups and downs of life take a toll. The good news and the bad news. The hope and then the dashing of hope.

Long term care-giving mamas, though, know it all too well. Balancing the moods, the environment, the activities, the meds, the decisions…and most definitely, the guilt for not thinking we’re doing it well enough.

Gary was right beside me last night, as always.

And so was God. He reminded me as I laid awake for a long time of His love for me and of His unending grace. Grace upon grace. Grace for me and for Aaron…and grace to give to me so I can give it to Aaron.

God’s strength is made perfect in my weakness. He never lets me down or leaves me to my own resources. He is forever there for me with that tangible comfort that only those who really walk with Him will know and understand.

In a real sense, these hard times…this Yo-Yo life with Aaron…keep me experiencing God in a way that I might not otherwise. For that I am thankful.

“Mom, don’t be sad.”

Aaron has no idea of how God uses him to teach me so much.

Let’s Go Racing!

Our son, Andrew, works for a professional NHRA race team. He works for Don Schumacher Racing and is on Leah Pritchett’s team. It’s an unusual, hard-working, and interesting life. Gary and I subscribe to the NHRA live feed so that we can watch each qualifying and elimination run at every race from February – November.

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This weekend the big Indy Nationals Labor Day race is being run for its 65^th year. It’s a huge event! And you can bet that Gary and I will be watching each run. One qualifying run was on Friday…two runs today…two more tomorrow…and the big race will happen on Monday. It’s so much fun to be able to go to the races while we’re at home! And even more fun to see Andrew!

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Leah and the team won the race at Brainerd two weeks ago. Here is a picture of Andrew and Leah with the coveted Wally trophy.

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We wish all of them the same success this weekend, for sure!

Someone else will hang out with us, too, for each run. Aaron! Now this is unusual because Aaron used to care nothing for racing. Part of that was lack of interest in the sport. But a huge part of his lack of interest was also due to jealousy.

Aaron has struggled with resentment toward Andrew for years. I think it’s partly because they are both guys. Aaron wanted friends like Andrew had…wanted to drive a truck like Andrew did…and craved the attention Andrew got when he told his cool stories.

Therefore, when Aaron would see Gary and me watching a race, he would say, “I don’t care about that stupid race!!” And off he would stalk, mad at us for the time and attention we gave to the race…and mostly to Andrew.

Something changed, though, a few years ago. Aaron took an interest in racing and so he would come down to Gary’s study to join us. Granted, sometimes his head is buried in his Nintendo DS, but he is still listening and soaking up knowledge about drag racing.

It was amazing and wonderful to hear Aaron talk to Andrew on the phone. “Hey, Andrew!! I watch you on racing!” And to hear Andrew so sweetly engage with Aaron, and to say he’s glad he gets to watch.

Our little neighbor came over a few weeks ago to watch a run with us. Keegan is in the first grade. It was so cool to hear Aaron answering some of Keegan’s questions about drag racing. Things like the difference in Funny cars, like Andrew used to work on:

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And Top Fuel cars, where he is now:

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It was also fun to hear Aaron talk about Leah Pritchett, the driver of the car where Andrew is now working. This has been one of the funniest and sweetest aspects of Aaron’s interest in racing.

Leah is very pretty. Aaron has never mentioned before that a girl is pretty. He might talk about her hair being “yellow”…or her clothes that are weird…or her weight!!…or any number of other aspects that often require our correction. But being pretty? Nope. Aaron has never seemed to notice. Until Leah…

The first time he saw her in a close-up shot on our television, Aaron said, “She has nice eye polish!” 😊 😊

Gary and I stifled laughter as we looked at each other in shock. Aaron noticed her eye make-up?!

When I was able to meet Leah in person two years ago at the Houston race, I told her about Aaron and what he said. She loved it!

Aaron has broadened his appreciation of Leah, though. He says that she is beautiful, and that he wants to marry her…which is to Aaron a normal connecting of the dots, not at all unusual or extreme.

This past year, in Houston, I asked Leah to sign one of her posters for Aaron. She was glad to do so.

And Aaron…he was BEYOND happy when I handed him his poster, signed – LOVE, Leah!!

He has showed this poster to all our neighbors and to many others who have come to our house.

I told Leah about this at the Topeka race, about how happy Aaron is to have her signed poster. It made her smile, and then to ask when she would see Aaron. But taking Aaron to an actual race…that’s a whole other challenge!

In all this racing interest, the best part has been to watch Aaron care about Andrew’s life and his job, and for the bond that has been formed between them.

“My brother is a drag car racer worker!” Aaron tells everyone.

That’s the best win-win, in our book.

But we would still love to see another Wally this weekend!

Smooth Gliding

Aaron had a seizure shortly after 4:00 this morning, so I kept him home from his day group today. One seizure not only makes him feel bad when he gets up and about, but one seizure can also mean more seizures to come…especially drop seizures that are so dangerous.

As I went sleepily up the hall this morning to be with him, I was mentally trying to remember what my day held that would need to be changed. Fortunately, today was just errand day for me…nothing critical that had to be rearranged, like a doctor appointment for me or for Aaron.

Still, the point is driven home yet again that I am always on call when it comes to living with Aaron. Any caregiver knows what I mean. It’s very difficult if not impossible to commit myself to activities that would demand my presence, like a job or even some volunteer positions. And that’s OK for me, thankfully. God has blessed me with the privilege of being able to stay at home with Aaron.

Sometimes that blessing, though, can turn into a struggle for me. Aaron isn’t always easy to care for. Oh, I can handle seizures and wet bedding and interrupted schedules and doctor appointments and all the rest that goes along with life…life with Aaron.

It’s his behaviors, at times, that wear me and Gary down. Aaron’s ups and downs due to his autism can be exhausting and so very frustrating. Then when I erupt, along comes the guilt and the “I’m so done!” attitude. My own ups and downs are personally exhausting to me on so many levels.

So today, in an odd kind of sad way, has been a reprieve for both me and Aaron. He is far happier when he has no place to go…no schedule to keep…no expectations. And happy Aaron equals happy Mom – though my heart is always sad to see his seizures and the toll they take.

One toll is that Aaron often loses his taste, as he says, after seizures…and today was no different. Nothing interested him for lunch until I mentioned cream of chicken soup. He slurped happily while watching a bit of the old Incredible Hulk television series, leaning back occasionally to hold his head.

Later, I sat down beside him and asked this magic question:

“Aaron, would you like to go get a milkshake?”

How Aaron loves milkshakes!

“Yeah!!” he answered as his eyes lit up. “And can it be a hot fudge?”

I agreed to hot fudge, and Aaron was happy and very ready to go.

When I later told him it was time to leave, he came to my closed bathroom door with his report.

“Mom,” he said. “I have on my shoes and my glasses and my watch.”

Bless his heart. Preparation details for these excursions are very important, even if Sonic is only one mile down the road.

When we got home, Aaron sat on our porch glider with his yummy hot fudge milkshake while I watered the porch plants and swept away some unwanted spider webs. Then I settled in beside him.

It’s a beautiful day today, and our time on the front porch and out in the yard later was so sweet. We examined the veins of the flower petals he pulled off my orange geranium. We talked about the dragonfly that landed near us…about the squawking blue jay we heard…about mosquitoes that drink our blood…about the squirrels that steal all our pecans…about the bag worms that haven’t built any web nests this year…about the bush that needs pruning yet again…and about the molted remains of Cicadas he found.

We examined mushrooms in the back yard…small, medium, and large.

And watched honeybees in the Rose of Sharon blooms, laughing at their legs all fuzzy with pollen as they flew around from bloom to bloom.

We also rocked in our front porch glider. Well, we attempted to rock. That’s because rocking with Aaron in the glider is either smooth and fun or is more often a lesson in frustration.

You see, Aaron has a hard time keeping a joint motion going as we try to rock. I go forward and Aaron is going backward. Or he keeps his feet locked on the ground, stopping the motion altogether. When he does master the idea of rocking simultaneously, he goes too fast and furious.

Smooth gliding with Aaron for any length of time is nearly impossible because he doesn’t cooperate. He’s not trying to be difficult. He just doesn’t have the motor skills to master the art of joint gliding, so we end up with an awkward mess most of the time. It takes time and patience on my part to hang in there with him and make it work, at least part of the time. It’s often best to just stop for a few seconds, and then try again.

In my walk with God, I’m often like Aaron on the glider. I don’t want to be. I don’t mean to be. But oh, sometimes I am so out of sync with God and with who and what I know Him to be. This is true especially in relation to our life with Aaron.

Over the years, God has worked and worked on me to show me that His ways are best, always. Not easy, but best. This path upon which God has set me is of His choosing.

But you know, I get tired. I find myself saying more and more that I’m done…just done. Yet that’s when God, if I get still and listen…like when I read His Word to me and I pray it back to Him…says to me that He understands. He knows tired and He knows being done.

What I need to know is that He is God. I just need to be still…to quit striving…and to know that He is God (Psalm 46:10). Sometimes God just needs us to stop the rocking, rest a spell, and then pick it up again.

And I need to let Him do the leading. It’s a mess when I take over.

I do that by trusting Him, obeying Him, confessing my failures, and looking at Aaron as a gift of God in our lives.

God doesn’t expect perfection from me, but He does expect cooperation if I want to live in peace and joy. Peace doesn’t come by my surroundings being what I want them to be. Peace comes to me despite my surroundings so often being an awkward and frustrating mess.

“Just be still now,” God says. “Quit trying to be the lead as we’re on this glider of life. I’m right here beside you. Let Me lead and you follow.”

“Lead me in Your truth and teach me, For You are the God of my salvation; for You I wait all the day.” (Psalm 25:5)

What Number?

Aaron loves storms.

LOVES storms!

And we got a doozy of a storm Wednesday evening. We followed it on radar as it approached. We saw the clouds swirling and thickening from my favorite upstairs vantage point.

Aaron was happy.

Happy until our power went out. What’s strange is that our power vanished before the storm really hit our area. We were surprised.

Aaron was puzzled.

He was also a little irritated that he could no longer be on his computer. A loss of electricity is not his favorite part of a storm.

We were outside looking at the clouds when Aaron spied our neighbors outside on their driveway, and despite my admonishments he was over there in a flash.

“Hey, Colby!” Aaron yelled. “Is your power out?”

And off Aaron tromped through our yards, his ever-present sweater flapping in the wind, to stand on Colby’s driveway…eventually joined by me and Gary, and Colby and Amanda, and Derek and Gina, and all their children…and Aaron.

Our neighborhood storm gathering didn’t last long, but Aaron took full advantage of the short time to become even more excited, more animated, and definitely louder.

Sorry about the sweater on your head, Gina.

It was probably best that rain started falling so we could all escape inside to our own homes, where for us…and for Aaron…the reality of no electricity began to settle in. No lights…no television…no computer.

Aaron was unsettled.

He was full of questions and wandered around the family room and kitchen, asking said questions and wondering what to do with himself.

His main question?

“When will the power come back on?!”

We had no answer, until finally Gary got an email from our power company with the answer.

The APPROXIMATE answer of 9:15 for restored power.

Too bad Gary told us the time, out loud for all to hear.

Aaron doesn’t do approximate.

Times for Aaron are pretty much precise or nothing.

I should just say precise. Pretty much precise does not go together in Aaron’s world.

Aaron and I have been watching the TV series, Bones, at night. We watch one show every night. Aaron, now busy playing his Nintendo DS in the family room that was lit with lanterns, latched on to 9:15 as being the firm time that our power would be restored.

“So Mom, can we watch Bones at 9:15?” he asked. I explained that we weren’t totally sure that the power would be on at 9:15.

A short pause ensued.

“Mom, do you think we can watch Bones at 9:15?” he ventured again.

That’s when I started praying that the Lord in His mercy would allow our electricity to be on by…if not by some miracle BEFORE…9:15.

At 8:58, Aaron announced that he was going to bed at 9:00. He loves watching lightning out of his upstairs bedroom windows, leaving his blinds up so he can enjoy his perfect view of the western sky. Aaron sat in his family room chair until it was 9:00, on the dot, and just as he promised he got himself ready for bed by the light of our lanterns. I was thankful for the storm’s distraction from his certainty that the lights would be on at 9:15.

At 9:11, just as I walked back into the family room after saying goodnight to Aaron, the lights came back on! Aaron jumped out of bed, of course! And at, or very close to 9:15, Aaron and I were settling in to watch Bones. Thank you, Lord!

The next night we had a chance of storms, but none were on the radar when Aaron went to bed. Just as I told him goodnight and was closing his bedroom door, he asked…as he always asks…if it was going to rain. I told him it might rain but that we’re never sure.

The words “might” and “never sure” are never satisfactory to Aaron.

“Mom??” he asked through the baby monitor on my nightstand as soon as I was in our bedroom.

I pressed the Talk button.

“What, Aaron?”

“So it might rain?”

“Yes, it might rain.”

“Might?” he repeated.

Sigh. That was me.

“Yes, Aaron, might.”

“So what number?” he asked.

I quit pressing on the talk button so I could laugh.

“40%,” I responded.

“What does that mean?” he asked.

“It means there’s a 4 in 10 chance it might rain,” I answered.

I knew he wouldn’t get that, but I did it anyway.

“So they’re not sure,” he said.

“Right, they’re not sure.”

“They don’t know,” he continued.

“Aaron, it MIGHT rain. They’re not SURE it’s going to rain. No one KNOWS if it’s going to rain. But MAYBE it will rain. Good night. I love you.”

Talk button off.

But Aaron’s talk button wasn’t off as I heard him muttering about the chance of rain as I escaped to the bathroom.

The next night, last night, saw us with that chance of rain once again. Aaron had already queried us over and over during the evening about the possibility of rain. As soon as our Bones episode was over, he looked over at me.

“Is the rain 4 to 10 tonight?”

I just didn’t even care at that point about precision and accuracy, about percentages and correct explanations.

“Aaron, I think it’s 5 to 10 tonight.”

“What does that mean?”

AHHHHHHHH!!!!!

That was me…internally.

“It means there’s a half-and-half chance it could rain.”

“So there’s half a chance it could rain,” he repeated.

He was satisfied with that, repeating it several times as we got his bed all ready and made sure his blinds were open in case that 5 to 10 worked out the way he hoped.

But I can tell you one thing. There is absolutely a 100% chance that we will again be discussing our rain chances all weekend long…over and over and over and over and over.

There is also a 100% chance that we will have our typical highs and lows…and I’m not talking about the weather now.

Oh, and a 100% chance that we’ll see this image of Aaron walking through our yard at some point with his favorite sweater blowing in the wind…slipper socks on…oblivious to the image he leaves for all to see.

Free as a bird…outside…where it might rain.

3 to 10 today.

8 to 10 tonight.

I’m ready with answers today!!

A Normal Thing

One evening we were eating supper and Aaron was talking.

That sentence makes me laugh because I could just leave the first part blank – to be filled in, you know – because any place and any time and any meal and absolutely ANY scenario could easily end with: “…and Aaron was talking.”

After all, the name of this blog IS, “He Said WHAT?!” I write about lots of other things, too, but I started out wanting to convey the amazing way that Aaron expresses himself. Sometimes he is not only amazing. He is also funny, maddening, complex, insulting, and so many other adjectives.

Anyway, we were eating supper and Aaron was trying very hard…and largely succeeding…in monopolizing the conversation. I don’t remember Aaron’s question to Gary, but Gary decided to answer in a joking way. Gary must have had a momentary loss of focus or memory. Aaron rarely appreciates joking, at least not joking in the way that we…and all of you, no doubt…would understand. Most joking does not compute in Aaron’s autistic brain. Instead, he is most often angered by the give and take that the rest of our family enjoys.

So, when Gary offered a little joking response, Aaron’s response was not at all light and funny.

“Dad!!!” Aaron responded. “I’m trying to talk a NORMAL thing!!!”

Oh, how I wanted to look at Aaron and ask, “Aaron, please define normal!”

Aaron’s definition of normal would most assuredly not be our definition of normal. And that’s OK, really. It’s just that sometimes we have a hard time not bending over in a belly laugh when Aaron responds to one of us as he did. Instead, Gary and I share a fleeting look of understanding with each other…a slight and very quick smile so that Aaron won’t notice…and wait until later to laugh at the whole situation. Or sigh, very deeply.

But we can’t sigh when Aaron is around.

“Mom!!” he said once after I sighed. “Don’t breathe madly!”

You would think that if Aaron notices my sighing then he would also notice and then copy how to engage in conversation, joking, excitement, and all sorts of other regular communication. Yet that element is often missing from Aaron’s abilities. It’s one of the mysteries of the autistic brain, that lack of being able to connect the social dots like you and I do.

As I mentioned earlier, our joking often sets Aaron on edge. But what Aaron thinks is funny is usually not at all funny. Aaron thinks it’s funny to whack a person on their bottom, for instance. I’ll never forget the day he hauled off and whacked a resident doctor in the hospital. That was an interesting moment, and so embarrassing for me.

And Aaron’s response when corrected was, and always is, this: “But I was just trying to be funny!”

We had this recurring scenario one day, with Aaron telling me he was just trying to be funny, when I repeated what I often say: “Aaron, what’s funny to you usually isn’t funny…at all!”

He looked at me for a few seconds and then answered: “Mom, I don’t know what I could use as funny.”

And THAT is a very true statement! It’s also a very insightful look into what makes Aaron tick.

Yet Aaron truly is very funny sometimes, although he doesn’t know that he is. He says things in such unusual and comical ways, but we often can’t laugh because we don’t want him to be self-conscious or to get angry.

A couple examples from this past week:

“Dogs are more trainful than cats.”

After dumping Parmesan cheese on his pizza: “Mom, you’ll need to buy some more of that spaghetti powder!”

And a favorite from the past, after I once again reminded him not to ever ask a girl how much she weighs: “Mom, I didn’t ask Tiffany how much she weighs. I asked her how much she eats!”

🙂 🙂 🙂

Aaron’s talking can also be very draining to Gary and me. Sometimes we try to slip out of the house without Aaron hearing us. We sneak out the garage door, closing the door to the house as softly as possible, and then we sit on our front porch for a few minutes to ourselves. We feel like two teenagers who are trying to sneak out without permission, and it makes us laugh.

But usually it isn’t long before we hear the unmistakable sound of Aaron in the house, clomping down the stairs and most certainly looking for us. He has something he must say and so he searches until he finds us.

Here he was one evening, standing on the sidewalk talking to us as if he was on a stage and we were his audience.

His subject was no doubt something like Star Wars and the Jedi Knights…or Transformers…or whatever else he was playing on his computer. Talk of androids and Anakin and Padme’ and Darth Maul…of Sith Lords and Jedi knights and clones and Queen Amidala…of light sabers and droids and the force and motherships.

His excitement builds as Gary and I slip further into a stupor.

Aaron doesn’t notice our glazed eyes or fixed looks. He’s having his version of fun! But then the dreaded happens! He asks us a question. And we just look at him blankly while he, at last, is quiet as he awaits our answer.

Our brains scramble to link up to the last thing or person or alien or whatever that he was talking about. If it’s a person, my usual answer is actually a question: “Ummmm…is he a good guy or a bad guy?”

Aaron happily answers me, and once again he is off and running – thankful for any engagement from me or from Gary.

Ah, yes, we’re having Aaron’s version of talking a normal thing.

But sometimes…sometimes…Aaron is quiet, like he was on the porch during this rainy moment. It was such a sweet moment, too.

And I am reminded that Aaron needs me and Gary to understand his normal and to, when possible, allow his normal to be our normal, as well.

WHACK!!

Except for that.

Sigh.

What Am I Cultivating?

I sat on our patio one recent morning, enjoying coffee while watching birds and dragonflies flitting all around. The mowed yard, the green trees, the blue sky…it was all so pretty and pleasant. But then my eyes wandered over to our garden plot. UGH!! So much for looking at beauty!

Why? Because for the second year in a row, Gary and I did not plant a vegetable garden. Rain…two out-of-town trips…schedules – it all added up to once again, no garden.

Now our small garden area is a huge mess, full of overgrown weeds and sad neglected old tomato cages. What a difference to have gone from this:

WP_20160720_17_05_15_Pro_LI

To this:

Same ground, but different cultivating.

I read this verse around the time I was thinking about the comparison in our little piece of land from one year to the next.

“Trust in the Lord and do good; dwell in the land and cultivate faithfulness.” (Psalm 37:3)

God’s desire for Israel was for them to dwell in the land He had promised to them. He told them over and over that dwelling in the land successfully and fully would require their total obedience to Him. In Deuteronomy 30:15-20, God told Israel very clearly what their choice was:

“See, I have set before you today life and prosperity, and death and adversity; in that I command you today to love the Lord your God, to walk in His ways and to keep His commandments and His statutes and His judgments, that you may live and multiply, and that the Lord your God may bless you in the land where you are entering to possess it.” (v. 15-16)

God told them that disobedience would bring death and a curse. He urged them to choose life by loving the Lord, obeying His voice, and holding fast to Him. And not just life but life AND prosperity.

In other words, to cultivate faithfulness.

This same principle is very true for me today. I have a choice to make. God won’t force me to make the right one, but He has told me what the right choice is and how to make that choice.

It’s simple, really. Choose to love God, choose to obey Him, and hold fast to Him. Hold fast by hanging onto Him when life is crazy and tiring and disappointing.

I get really tired sometimes. I know we all do. Just as I began this blog, Aaron called me from his day group. I knew he had been having a hard day, and his voice and manner on the phone confirmed it. I ended up just picking him up early today to avoid any further meltdowns at his day group. This change in my day was not in my plan. His attitude today makes me angry and tired.

And guess what I saw before all this happened? Beautiful beach vacation pictures. When I hung up from talking to Aaron, I was wanting to just hang up this life with him too, quite honestly. For a fleeting minute, I wanted to give in to my beach thoughts…have a pity party…and allow myself the “luxury” of wallowing in the wishes for a life I don’t have.

I just HAD to be writing a blog today on faithfulness, right?!

You see, God has put me right here where I am. This life with Aaron is not what I had planned, but I must see and trust that this life with Aaron is what God planned…for me.

And in this life that He planned for me, I really do want to live it in victory and joy. I want to cultivate this:

IMAG00644

And not this:

It truly is up to me which picture will be the picture of my life. I choose what to cultivate by choosing whether to love God…obey Him…and hold fast to Him.

I love Him by praising Him even when I don’t like what’s going on around me.

I obey Him by reading His word and finding out what exactly it is He wants me to do each day…and then DO it!

And I hold fast to Him by not allowing my thoughts to digress into selfish wishful thinking and all those “what if’s?” and asking Him to give me grace to love and handle Aaron correctly.

I should know that when God burdens me with a blog, then He’s going to hammer it home to me in a very personal way! 😊

So, wherever you are today…on a public stage or stuck at home…reeling from an unexpected diagnosis…planning a funeral…facing life alone as a single…hurting from unfaithfulness…starting all over in a new life or new church or new friends…losing your job or needing a new one…raising your grandchildren…raising special needs children…

Whatever is your situation, just remember:

CULTIVATE FAITHFULNESS!

And just watch what God will grow in your life!

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Lens #1

Last week, I once again took Aaron to his yearly eye exam. Doctor visits are always an adventure with Aaron. Waiting for the doctor to come into the exam room is also a test of my patience. Aaron stretches and wants to lay down.

Or he eyes the tempting equipment and tools that the doctor uses, trying to pick them up and test them out before I tell him to stop.

IMG_1081_HEVC_Moment

As I sat with Aaron last week and watched him during the exam, I was reminded of the following post from a couple years ago. This was such a funny moment for me! Here is what I wrote:

I took Aaron to his yearly eye exam today. God bless Aaron’s eye doctor. Next week I’ll be saying, “God bless Aaron’s dental hygienist,” but today all blessings go his eye doctor and to the staff. Oh, Aaron isn’t mean. He just has a very difficult time understanding what the doctor needs from him…..how to express what he is seeing or not seeing clearly…..opening his eyes wide…..not leaning back from every instrument that comes toward his eyes…..things like that. There was one very funny interchange, though, during the exam. You know how the doctor wants you to tell which lens helps you to see the letters on the wall the clearest.

Dr. Nelson: Aaron, is number one better? Or number two?

Aaron: Number one.

Dr. Nelson: OK. Now which is better? Number three, or number four?

Aaron: Number one.

Dr. Nelson: Let’s try again. Number three, or number four?

Aaron: The first one.

Dr. Nelson: You mean number three….here…..or number four…..here.

Aaron: Number one.

Dr. Nelson: Let’s try these. Number five, or number six.

Aaron: The first one.

Dr. Nelson: Let’s try number seven…..

Aaron: Number one.

Dr. Nelson: OK, let’s not do numbers anymore. Is this one better, or this one better?

Aaron: Number one.

HaHaHaHa!!!!!! How I wanted to belly laugh!! I do believe that number one was the winner, don’t you??!! 😎😵🤣

However accurate Lens #1 was, Aaron was sure that this was the lens he liked the best. He didn’t waver one bit from that determination.

I’ve been thinking about this as I look at my own life, and the lives of many that I know and love.

Through what lens am I looking at my life?

I just ran upstairs to be with Aaron as he had another seizure today. I’m thankful he was lying down, so there was no falling and no injuries. But his seizures, especially after all these years, are serious and scary. As we get older, and as Aaron gets older, Gary and I do wonder about our future and his future.

In the past days, I have communicated with family and friends who are enduring all kinds of trials. Two with aggressive and serious forms of cancer, out of the blue. Tragic family issues. Separation. Divorce. Friends who just bought a house and now he lost his job, literally overnight with no warning. Lots of chronic health issues with no end in sight.

So much suffering! And the way that I view suffering depends upon which lens I choose to look through.

I know the lens I NEED to be using. I need to focus on the God that I know and on His word that He has given me. I may be rattled and shaken, but my focus will be sharp if I’m looking to God. My faith is in and on Him when I look to Him…not disrupted by all the suffering around me that I or others are enduring.

It’s like Aaron’s eye exam. I need to realize that lens #2 or lens #3 are not right for me.

Fear is not a lens God wants me to use when viewing my circumstances, or the circumstances of those I love. Neither is anger…or worry…or a host of other responses that are all too common for me.

I know that when I have my eyes off God, life becomes blurry. I lose focus. I lose peace. I lose hope.

I need to go back to lens #1, for sure!!!

The best way for me to keep my focus is to go to my Bible…to read God’s promises and let His words soak into my mind and my heart.

My parent’s favorite Bible passage is perfect for me to use in keeping my focus:

God is our refuge and strength, a very present help in trouble. Therefore

we will not fear, though the earth should change and though the mountains

slip into the heart of the sea; though its waters roar and foam, though the

mountains quake at its swelling pride. (Psalm 46:1-3)

God told us we would have suffering and trouble on this earth. But He also has promised to be our very present help, our strength and our refuge, no matter what carnage is around us. He is a loving Father who takes care of His children.

This is the focus I need. God is the focus I need.

God is my lens #1.

I love the old hymn, The Solid Rock. Look at verses 2 and 3:

When darkness veils His lovely face,

I rest on His unchanging grace;

In every high and stormy gale,

My anchor holds within the veil.

His oath, His covenant, His blood,

Support me in the whelming flood;

When all around my soul gives way,

He then is all my hope and stay.

On Christ the solid rock I stand;

All other ground is sinking sand,

All other ground is sinking sand.

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