Autism Spectrum – He Said What?!

A Girlfriend

Tears stung my eyes one night last week as I listened to Aaron suddenly tell me about how much he loved his friend, N. Oh, he’s talked about N for a long time. Sometimes she’s his good friend…sometimes she’s his antagonist. She is a fellow client at Paradigm, Aaron’s day program, and they have known each other for years.

Aaron’s developmental delays due to his autism and seizures have prohibited him from having some of the normal joys of life that our other two children have enjoyed. He’s not able to drive. Holding down a job would be very difficult for him. Responsibilities that they have assumed as they have become independent have not been possible for Aaron.

Aaron has always had a pretty simple view of life. He’s never seemed to really mind not moving on in life as Andrea and Andrew have. It’s actually a blessing that he doesn’t have those desires. He’s very happy to live as he does.

Yet when Andrea and Kyle started dating, we saw another side of Aaron beginning to show. It was a combination of jealousy over Kyle’s relationship with Andrea, whom he dearly loves, and resentment. But was there resentment over Kyle taking Andrea away? Or resentment over Andrea and Kyle having something that he did not have?

Two years ago, Aaron went with Gary and me to see Andrea in Houston. This trip had the different dynamic of Kyle now being in the family picture. He and Andrea were not engaged yet, but we all knew that they would be someday.

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On one hot Texas afternoon, Kyle was showing us around Galveston. We walked in the historic district, going into quaint shops and enjoying the sights before heading to dinner and the beach.

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Aaron, however, was in a very foul mood. And when Aaron is in a foul mood, no one is in a good mood.

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Aaron didn’t want ice cream. Aaron didn’t want candy.

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Aaron didn’t want to look at old architecture.

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Aaron didn’t want to have his picture taken.

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It was miserable. WE were miserable! He kept saying, “I just want to go out to eat and go to that lake!” A really big lake, by the way.

In the parking garage, as we walked to our car, Aaron finally had enough. With pent-up anger, as I tried to walk with him and cheer him up, he blurted out: “Well, Andrea and Kyle are going to get married!! Why can’t I get married??!!”

There it was…a glimpse into Aaron’s feelings and into his heart. And there I was, with no words to console him. What could I even have said to make him feel better?

In the following months, Aaron brought up the girlfriend and marriage subject more and more often. He was putting two and two together, and there were some uncomfortable moments.

“Mom,” he said one day, “I want a girlfriend.”

“Oh, Aaron,” I answered. “I understand that, but you don’t really need a girlfriend. Just be happy to be friends.”

“But you were a girlfriend to Dad, right?” he asked.

Oh dear! Busted!!

“Well, yes, I was,” I uncomfortably answered.

“What was it like?” he continued.

“Ummmm,” I struggled, “it was special.”

“I want to be special,” he said.

My heart!! What does a parent do with this side of their special-needs child?! No doctor or medicine or therapy can fill the normal void of my son wanting to be loved in the way that I had just described as being special!

As Andrea and Kyle became engaged and we planned their wedding, Aaron was resentful. He didn’t even try to hide it. And on the day that we told him about their engagement, he went outside and did his thing in the mulch, alone, as he crumbled mulch and I watched him out the window…my heart crumbling, as well.

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Gary and I have tried to be honest with him as he’s asked more than once about why he can’t get married. I mean, could he marry one day? But then we’re reminded of the very answers we give to Aaron when he brings up the subject.

We tell him he needs a job…that he would need to live somewhere else with his wife…be able to pay his bills…that there would be her medical issues and his medical issues…

And we feel mean to tell him these things.

Yet that IS the reality of Aaron’s life. Reality can’t be sugar coated in an effort to make Aaron feel better.

Or in an effort to make us feel better, as well. Letting Aaron marry would bring to our doorstep a host of issues that we do not even want to think about.

On that night last week, after Aaron and I had watched a rather emotional episode of the series we’re watching, instead of hurrying out of his chair he instead started talking.

“Mom,” he began. “I love N, and she says she loves me. When I come in Paradigm, she says hi to me. She wants me to sit beside her, and she holds my hand. That makes me happy. It makes me feel good.”

The sincerity in his voice and his sudden cascade of words stopped me from moving off the couch. His rushing words and his emotion also stopped me from brushing off what he was saying. Instead, I sat there and looked at him as he talked. He continued.

“Ever since first grade,” he said, “I wanted a girlfriend. No one ever wanted to be my girlfriend until N.”

It was hard not to smile, and also hard not to cry. In fact, my eyes did fill with tears, which Aaron really dislikes.

“Are you crying?!” he asked. But when I told him I was, a little, he didn’t even get upset. He just kept talking about N…about how he wanted her to be his girlfriend…and how no one else wanted to be her friend.

His relationship with N is complicated. She is complicated and Aaron is complicated, and there are many issues. N uses Aaron, trying to take his money and his food and all his time. She gets angry, and sometimes makes Aaron cry. Yet Aaron defends her most of the time, particularly when she talks him into giving her his money.

Aaron reminded me of the day that I had recently called Barb about N taking some of his money. Aaron gets very angry when I do that. He said the most amazing thing that night.

“Mom, when you called Barb about N taking my money, you messed up the boyfriend/girlfriend option!”

Where on earth did he come up with that?! And how on earth did I not break down laughing?!

A few weeks ago, as I drove Aaron to Paradigm, this is what he said:

“Mom, N asked me to marry her. On accident, I put it too far and I said yes!”

Again, I was laughing inside but knew that on the outside Aaron needed my understanding. Thankfully, his “putting it too far” did not end up in a commitment of any kind. But sometimes, in his heart, I know he wants to have this taste of a normal life even though he has no idea at all about what it would mean.

But Gary and I know what it would mean, and we know it can’t happen. It makes me a little sadder for Aaron when he does talk about it. Yet I think of the reality of what would happen if we said yes to this grand idea, and I’m jerked back to THAT reality and know that it can’t be a part of Aaron’s life.

God continues to give us grace and to soothe my heart when I hurt for Aaron. And I’m very thankful that He gives us the strength to not “put it too far,” and say yes!!

I’m thankful, too, that God isn’t too far from us in any of this. He knows and understands, and His promise to be near the brokenhearted is always true!

The Jam in the Road!

I broke the devastating news to Aaron a few weeks ago.

“Aaron!” I began with great excitement. “We’re going to Houston over the 4^th to see Kyle and Andrea, and YOU’RE coming with us!!”

There was a pause. I often know what Aaron’s pauses are about, but this one was a mystery. Not for long, however.

“NO!!” he replied with emphasis. “I DON’T want to go to see Andrea and Kyle!!”

“What?!” I asked. “You’re always saying, ‘Can us as a family do this or do that?’, so we thought you would love going with us.”

“I DON’T want to GO!!” he blurted out again. “I want to stay in this house, and I want Casady to watch over me!”

I was surprised at this turn of events. Aaron has traveled with us in the past, even on an airplane, and has not demonstrated this level of anger at the thought of traveling. Thus began our big summer sell…yes, sell…as Gary and I attempted to sell Aaron on this idea of taking a vacation trip with us.

Just as we would be thinking that Aaron was warming up to the idea, out he would come with another reason that he did NOT want to go.

“I just like MY house!”

“I want to sleep in MY bed!”

“I want Casady to watch over me!”

“I want to eat out when you’re gone!”

“Are we eating at a restaurant on the way to Andrea’s, or at a STORE?!!”

And even when he saw a commercial about our local fireworks, he had even more ammunition for not going with us.

“SEE??!! The fireworks start July 4^th! How can I see the fireworks if it’s not July 4^th at Andrea’s house?!”

I got lots of deep breathing exercises done during those 3 weeks before our trip. Lots.

He ran out to the porch one day when he saw me talking on the phone.

“Is that Andrea?? Let me talk to Andrea!!”

So, I put the phone on speaker.

“Andrea!! Do you have a place in the wall in your house where I can plug in my Nintendo??!”

Seriously?? Does he think that Andrea and Kyle live in a jungle tent?!

But as always, Andrea was the picture of patience as she carefully answered all of Aaron’s questions with as much seriousness toward him and his concerns as she would if she was talking to one of her genetics patients.

He told everybody he talked to…neighbors, day program staff, family…that he did not want to go to Texas. Everybody told him how much fun it would be, and that he should go and that he would love it. He didn’t care what everybody said. His mind was made up. The big sell was not working.

He and I packed his DVD player on the weekend before we were leaving. He picked out some movies. We packed his CD player. He picked out some CD’s. We packed his Nintendo DS. He picked out the game he really wanted to play along with the game guidebook. We packed his Handy Answer Geology Book because his topic of choice and endless conversations at that time was all about the core of the earth. We packed his snacks. He picked out Pringles and Twizzlers and peanuts at Wal-Mart.

There! We were all set!

Or so we thought…and hoped. Silly parents!

On Tuesday, the day before we were leaving, I had hoped to get out the door to take Aaron to his day group a little early so that I could get a pedicure. But Aaron was grouchy about having to go to Paradigm and having to go to Texas the next day. He was a simmering mess as we drove to his day group. And when he got out of the car, he threw his water bottle at the fence.

“Get in the car,” I told him. “I’m taking you home.”

But a few blocks up the road, Aaron begged me to turn around and take him back. I did. And a few miles up the road, my cell phone rang. It was Aaron, who was crying as he told me that this time he threw his water bottle at one of the staff. I turned around again, picked up my upset son…trying hard myself not to be the same…and took him home. I zipped down to the nail salon, where there was by now a long wait, so I once again headed home to finish our packing and to deal with angry Aaron.

Aaron was spent and he was sad over his actions. He walked in while I was loading some clothes into the washing machine.

“Mom?” he calmly asked. “Can we start over and forgive each other?”

Of course, my heart melted as I assured him that we could most definitely do just that. I had no idea how much forgiving was in my near future.

The remainder of that day was happy, but as bedtime drew near his mood changed yet again. He was nervous as the actual day of our trip was now a few hours away. Everything was irritating him, especially me.

More deep breathing for me as I stared down at my toes that did not have their needed pedicure.

The departure morning dawned with us having to awaken angry Aaron, who wanted none of this trip. We were finally in the car, packed to the gills, with one quick errand for Gary to run before we left town. I ran to the back of the car to adjust some things and had to smile at Aaron. There he was, earphones already in use, with all his food and music and movies and coffee and pillow around him.

We weren’t too far down the highway when Aaron decided to take a nap. This was a good thing in more ways than one.

And when he woke up, he was a new man. He was happy and talkative…in a very nice way…ready for a rest area stop and full of new life.

Maybe we made the hard sell after all?!

We headed back down the highway again.

“Can we stop for lunch?” Aaron asked. “At 12:00?”

Of course, Aaron wanted lunch at 12:00! Those who know Aaron know that he will rarely eat lunch before 12:00. There he was, sitting behind me, watching his core of the earth movie…wearing his sweater with his shoes off and his striped blanket over his lap…wearing his headphones…crunching on his peanuts…

Aaron very much wanted his normal to travel with him. The reason he did not want to take this trip is because his normal is at home, not in the car and not on the road and not at Kyle and Andrea’s. He feels no control when his normal is disrupted, and having no control is both scary and maddening to Aaron. The behaviors we were seeing was, for Aaron, his normal way of expressing his loss of normal in his life. But for us, it was very frustrating and exhausting to deal with his handling of these concerns.

It was classic Autism 101. And we were just beginning our class. We had no idea of the tests that were yet ahead. Like these storm clouds south of Dallas, we were headed into an Aaron storm.

The first one hit us about 40 miles from Houston, near the Sam Houston National Park. Not rain and lightning, but red tail lights. Those tail lights up ahead of us on I45 were not a welcome sight. Traffic jam! And not just a little traffic jam! We were stuck there, creeping along very slowly, for over an hour and a half!

Aaron lost his happy. We nearly lost our cool. The day had totally gone downhill yet again.

“Can we just HURRY with this vacation?!” he asked.

Oh, if only!!

Finally, we pulled into Kyle and Andrea’s driveway. We could hardly wait to get inside, to hug our kids and hug the doggies, to stretch our legs and our backs, and just be out of that car! Except for Aaron, who angrily informed us that he was NOT getting out of the car and he was NOT going into Andrea’s house and that he WAS going to stay in the car all night. Twelve hours in the car wasn’t enough for him?!

But I knew what was going on with Aaron. He was a nervous wreck about going inside this new house that did not hold his normal. Even the fact that Andrea was there didn’t help him at that point because her life in this strange house was just that…strange. She was married now, she and Kyle living together, and all of it was just too much for Aaron.

Gary and I went inside to barking, ecstatic dogs…to hugs from Andrea and Kyle…to the smell of supper and the warmth of family. But poor Aaron, still out in the car, was only anticipating a very unfamiliar and uncomfortable start to this vacation.

My heart went out to him even as I battled my desire to yell at him. One day in, and this vacation was not the happy time that I had hoped it would be.

I went outside, where I found Aaron struggling to gather up and carry as many of his things as he could. He would carry as much of his normal into this strange house as he could! Finally, he headed toward the door, his arms as full of his blanket and movies and music as he could carry.

I got him in the house, then went back to the car for some things, and when I walked into the kitchen a minute later there stood Aaron, talking for all he was worth about the core of the earth. It was so classic! So totally Aaron! And so lovingly Andrea as she sweetly conversed with him about a subject so out there…but again, so Aaron.

Andrea walked with us upstairs to the bedroom Aaron was using. She had it fixed just perfectly, complete with a big soft stuffed dog bearing Aaron’s name, perched on the bed. She knows her Aaron so well! We showed him that Andrea and Kyle did indeed have outlets in their walls! We got all his devices plugged in. We showed him how his bed would be just fine…how there was a lamp on the table beside the bed…how he could see at night with the light from the window. He was relaxing, at least a little, though still full of concerns.

He didn’t want to come to supper, but finally he did come down. He ate, all the while talking to Kyle about Star Wars matters. Kyle engaged him perfectly on that topic. Aaron was literally shaking all over, partly because of pent-up nerves and partly because he was SO excited to be talking about one of his favorite subjects with someone who knew all about it, too.

The next three days were quite a mixture for all of us. Aaron was at one moment happy and funny, and the next might be angry and insulting. He had some good times when Kyle’s mom, dad, and cousin came over for the 4^th. We ate burgers and watermelon and watched some fireworks. He spent a little time here and there petting the dogs. But he didn’t want to go anywhere, and we knew not to push him. He was happiest when we went out to eat one night. But we didn’t take him to the beach or a museum or shopping. Heat and crowds and Aaron’s mood was a volatile mix. It was not the vacation that I had hoped it would be.

Aaron was more than ready to leave on the morning of our departure. “I want to live in MY house, not HERE!” he declared. Nice.

Aaron’s normal was spread around him on the back seat as we made good time leaving Houston and trucked up the highway toward Dallas. But south of Dallas we saw them…the red lights of stopped cars!!

“Is that a JAM in the road?!” Aaron asked, almost in a panic.

“I’m afraid it is,” Gary answered. And sure enough, we crept along again for over an hour due to an accident up ahead.

Later, in Oklahoma, we had another slow down for construction. Aaron got so that every time he saw backed up traffic ahead, he would ask the same question.

“Is that a JAM in the road?!”

How perfectly that describes our life with Aaron…and not just on this vacation, but nearly every day.

We get jammed up trying to understand and manage Aaron’s behaviors…his way of thinking…his expectations…his demands. We are forced to move at a much slower pace than we want because Aaron won’t respond to any other speed than his own.

“Oh, he’s just autistic!”

That’s so easy to say, but wow, the complexity of what this autism involves!

I cried twice at Kyle and Andrea’s. Cried out of sheer frustration, disappointment, anger, and sadness. Cried because I realized how tied down and unusual our life is with Aaron. Then came guilt because I felt that way.

UGH!!!!!

I was anxious to get back in my Bible on Monday morning. Nothing comforts me and encourages me like opening God’s treasure chest full of His words. One thing I read in a devotional book I’m using was Psalm 12:6:

“And the words of the Lord are flawless, like silver refined in a furnace of clay, purified seven times.”

Boyd Bailey said, “The Bible is our handbook for holiness and happiness. We steward it well when we honor it above our own wishful thinking.”

My wishful thinking about life with Aaron isn’t what often honors God or helps with our big road jam. But when I read the Bible and listen to God, I do find what Boyd Bailey also says: “We listen for instructions in our obedience. We listen for encouragement. We listen for rebuke. We listen to the Lord’s flawless words because we know we are loved by Him.”

The traffic jams on our road with Aaron will continue. They will come and they will go. Up and down. I mess up. I don’t have all the answers.

But I know where to go for all that I really need, and for God’s Word and for His love I am ever grateful.

God knows the road ahead for us with Aaron. The map of His Word will guide our attitudes as we journey. God will go before us, behind us, and most importantly He will be beside us.

There isn’t a jam in any road that’s too big for God!

The Colliding of Obsessions

How did such a small thing cause such a huge problem?!

That’s what I was asking myself yesterday as events unfolded at Paradigm, Aaron’s day group.

The small thing was a simple little Subway gift card. I had used the remaining money on it last Friday when Aaron and I went to get subs for supper. I had asked Aaron to throw it away in the trash can near the door as we left, but instead he saw the opportunity to keep something interesting. He thinks gift cards are fun to hold, like a credit card, and to slip in his pocket for safe keeping. When he asked if he could keep it, I agreed…with the further comment from me that I would one day be throwing it away when I found it laying on the floor of his room. Experience is a good teacher, after all, and a good reason to hope that Aaron will keep the floor of his room picked up.

Yesterday morning, Aaron once again slipped the little yellow Subway gift card in his pocket as we were getting ready to leave for Paradigm. Of course, I didn’t see it or know that Aaron had it in his pocket. Even if I had, I wouldn’t have objected. But that was yesterday. Today might be a different story.

You see, Aaron tried to give the card to K, another client at Paradigm. What I didn’t know, but I do now…as does Aaron…is that K is a hoarder. Aaron has in the past caught on to the fact that she loves notebooks and papers. He brought her two notebooks from our house, and wanted to continue until I said no. I also found out that Aaron was taking paper from the computer printers at Paradigm, and trying to sneak it to K.

One day as we were leaving for Paradigm, Aaron ran back in the house to get something. I followed and waited in the kitchen. Soon Aaron rounded the corner, surprised to see me standing there. Look at what was under his shirt. BUSTED!!

Aaron was laughing because he saw the humor in the situation, thankfully. I had asked him if he was taking K a notebook, and he told me no…but he was laughing because the truth was very obvious!

Back to the Subway card. The staff at Paradigm saw Aaron give K the card, but they had to take it away because of her hoarding. Aaron was VERY upset by this! My cell phone rang as I was on my way to get him at the end of his day. There was Aaron, trying to explain the situation to me but getting more belligerent with each word. Barb was there, trying to explain and to calm Aaron, but he would have none of it. He yelled at Barb, very angrily, but Barb was able to explain things to me as I neared Paradigm.

Aaron came to the van, unhappy and frustrated and embarrassed. We talked as I drove us home. We talked after we got home. We talked during supper. We talked after supper. We talked during the evening. We talked out in the yard with our neighbors. We talked on the way to bed. We talked after Aaron was in bed. We talked first thing this morning. We talked during breakfast. We talked while I was fixing my hair.

You get the idea, right? Aaron must talk and talk and talk and talk as part of his method of processing these situations.

But here’s the deal…the thing that strikes me so much about all of this.

So many of the clients at Aaron’s special needs day group have obsessions of varying sorts. An obsession is a “compelling motivation.” And trust me, these special adults are extremely compelled in their motivations to satisfy their various obsessions.

One of Aaron’s obsessions is to give things away. Now, that sounds very sweet, and often it is. But he will give away his food. He will give away his money. And he will give away anything else he has that he thinks might make someone happy.

What he doesn’t understand is that often he is also feeding another person’s obsession…an obsession that the staff is attempting to help the person control.

Years ago, Aaron met Rosa at Paradigm. They became special friends. Aaron found out that Rosa liked crayons, so he would take her a few crayons almost every day. I didn’t realize that Rosa didn’t just like crayons…she was very obsessed with crayons. Too many crayons pushed her over the edge emotionally. I learned this after talking to Rosa’s mother. She and I are good friends today, and I was very thankful that she let me know that Aaron’s generosity was actually a detriment to Rosa.

Over the years, we have seen this pattern repeated over and over with Aaron’s various friends. One wants his food. Another wants his money. One likes stuffed animals. On and on.

It’s what I call the colliding of obsessions. Aaron will give ANYTHING away, so if he finds that someone likes something, he will do anything within his power to see that they get it. He is feeding his obsession while feeding theirs.

Few of these special friends of Aaron’s can fully understand the situation in which they find themselves. Reasoning through this with Aaron was extremely difficult yesterday. He blamed Barb. He was angry with me, and with Gary. He firmly informed us that he was NOT going to Houston with us to see Andrea and Kyle over the 4^th.

And he obstinately folded his arms while telling us that he didn’t care!

But he does care. He just can’t rationalize this like we can. And neither can his special friends at Paradigm who struggle with their obsessions. It’s a volatile mix!

Kudos to the staff at Paradigm, and at so many other special needs groups, for all they must handle when it comes to these situations. Most are like Aaron and can’t connect the dots in order to make a complete picture. There is anger and yelling from the clients while the staff must remain calm and focused.

Every. Single. Day. The staff diffuses these situations every day. Just this morning Barb told me that she had already taken a whole sack of used QT coffee cups and empty containers of disinfectant wipes away from K! And I’m sure K was not one bit happy.

I kept Aaron home today to allow him more time to decompress, and to decide that Barb really isn’t the enemy here. He loves Barb – she’s his second mother – and tomorrow he’ll probably be fine. I’ve had time to further explain K to Aaron.

As we talked, Aaron told me that K saw the card and wanted it. I don’t know if that’s totally true, but he also said that she told him it was her birthday and he should give her the card. His statement to me, though, was so telling…said in Aaron’s very special way.

“Mom,” he said, “I fell into her idea.”

I chuckle at how he words things while also being amazed at his insights.

Oh, if only he would remember not to fall into other’s ideas…and into many of his OWN!!

And if he would also remember what I tell him on many days. I tell him not to give away his money, but to give away kind words and friendship to others. No one can get enough of those!

That’s an idea worth falling into!

The Hard Parts

Tuesday was my birthday, and an early gift for me that morning was that Aaron got out of bed much earlier than the day before. Why is that a gift? It’s a gift because having to wake Aaron up to get his day going often brings anger from him, but if he gets out of bed on his own it usually comes with a far improved mood…from BOTH of us!

Aaron’s bedtime logbook that he faithfully fills out every day shows that he got out of bed at 7:16. Not 7:15. 7:16. I just wanted to be sure that I was clear on that point, since Aaron is forever and always very clear and precise about his times.

My memory logbook in this brain of mine has recorded that on Monday, Aaron did not get out of bed at 7:16. He was sleeping soundly on that morning, so I had to wake him up, which can be very tricky. Being awakened by Mom is not on Aaron’s list of Happy Ways to Start My Morning. It’s not on my happy list, either. That’s because there is almost no way for me to get Aaron to wake up that suits him. Monday was a rather angry morning for Aaron, but he did go to his day group and I was thankful for the reprieve.

So, Tuesday was wonderful! Aaron was happy, not at all because it was my birthday but because I did not have to talk to him in my weird voice…or shake his leg…or look at him with squinty eyes…or any of the other very irritating manners that he thinks I demonstrate when I’m working to get him out of bed.

I offered to fix Aaron some French toast since we had time and since he loves French toast. He readily agreed, so while he showered…in whatever form that process took that morning because we’re never quite sure…I began the French toast. Later, as Aaron sat down to eat, I saw him immediately place something from his plate onto the table beside him. Can you see the little dark spot there on the table near his plate?

I knew what it was. The small glob was a piece of the toast that had cooked harder than he likes. Aaron always places hard parts of food off his plate because he will not eat them, and he doesn’t want them near his food that he IS eating.

Later, when we were both done with our breakfast, I saw that on his plate was one more bite of French toast. I told him he had one more bite to go as he got up from the table, but he told me that he didn’t want it.

“It has those hard parts, Mom,” he explained. I didn’t push the issue or make a big deal about it. After all, why ruin our good morning over one bite left on his plate?

But as I looked at his plate, I thought of how much like life those hard parts are. Hard parts are most definitely a real part of all our lives. I wish I could just have all the plump, juicy pieces that are easy to swallow. But no, it doesn’t work that way. Life, all too often, seems to have way too many of those hard parts.

I remembered those set-aside pieces the next day as I took Aaron to his Epilepsy doctor appointment. It was time for more blood work for Aaron, so after his doctor visit, we walked over to the building next door and went up to the lab. We’ve been very blessed that Aaron, from the beginning of his seizures at a young age, has always liked watching the needle go in his arm. Even when it hurts, Aaron wants to watch each time.

I looked at him sitting there, taking it all in, and I suddenly wanted to cry. I wanted to cry because he looked so vulnerable. We get used to all these doctor visits and needles and medicines and tests, but today it was like I was seeing it all fresh and new. He was my little boy again, with his life ahead of him…all of us unaware of all the hard parts that were ahead.

Soon we were waiting on the elevator, Aaron more than ready for lunch at Applebee’s. The door of the elevator opened. I hesitated to get on because there was a woman in a wheelchair inside, plus the nurse who was pushing her, plus another woman, plus a man. That’s a lot of pluses! The woman in the wheelchair saw our hesitation.

“Come on in!” she cheerily said. “I won’t bite!”

I laughed, told Aaron to follow me, and we stepped inside. I stood in front of the woman in the chair, facing her. I saw then that she was on oxygen. She was wearing a hat to cover her bald head, and her skin had the unmistakable chalky look of advanced cancer. I thanked her for letting us crowd in, and then I asked her how she was doing.

“Oh,” she said now with weariness, “I’ve been better.”

“I’m so sorry,” I told her. I wanted again to cry, and I hoped she knew that I cared.

As the elevator stopped and we all went out into the hall, I saw that the man from the elevator was walking with a badly deformed leg, or maybe a prosthesis under his pants. His walk looked so painful. And there outside the front door was a van from a hospice group, waiting to take the sweet cancer patient to her destination.

Hard parts. All around me were hard parts.

Still fresh in my heart was the message from a friend about her impending divorce, received that very morning. Other concerns for family and friends weighed on my mind…death, loneliness, health issues, fears, financial problems, job concerns.

Do I sound depressing and dreary? I don’t want to leave it there, because for those who know God and follow Him, these hard parts are also precious parts of growing closer to our Savior. Jesus suffered, and so shall we suffer. But we have hope because we know that God is in control of every part of our lives…the easy and the hard.

This hope isn’t like saying, “Oh, I hope that works out.”

NO! This hope is a certain expectation that all WILL work out according to God’s will, for our good and for His glory. The outcome may not work out exactly as I want, but my wants are not nearly as important as God’s will.

Is Aaron cured of his Epilepsy? No.

Is Aaron cured of his autism? No.

So, how do I handle those “no” answers? I handle them by fully embracing that a “no” answer is still God’s answer to me. I trust Him to know best.

And I don’t try to push those hard parts out of my life and out of my heart. I accept their reality with God’s grace.

Of all the Aaron issues that we deal with, his behaviors are by far the hardest to handle with love and wisdom. Gary and I get tired…frustrated…overwhelmed…angry. But Aaron is the whole package, the easy and the hard. The sad and the hilarious.

We wrap our arms around Aaron and love the whole person, seizures and autism mixed in with all the rest.

Like Jeremiah said:

“Blessed is the man who trusts in the Lord, and whose trust IS the Lord!”

“You are my refuge in the day of disaster.”

And so must each of us see every part of our lives as just the right mixture that God intended, and not try to remove the parts that are hard as being too hard to handle. Go in God’s strength and trust Him.

The Dandelion

I’m a little…actually, a lot…fired up right now because of an article I just read. Apparently, a special-needs teacher in Indiana decided on award night to present one of her male students with the Most Annoying Male award. Yes, you read that correctly. She did this in front of all the other students and their parents, including the parents of this young boy.

OK. You have the background now for why I’m upset. To publicly humiliate this boy and his parents is inexcusable. To do it in this fashion is heartless. And the fact that this woman actually teaches special-needs students is beyond belief.

Yesterday evening, after we ate supper and as I was cleaning the kitchen, I looked over at our kitchen table. The evening sun was shining in the windows beside our table, highlighting the beautiful flowers that Gary brought to me last week for our anniversary. The flowers still look so gorgeous, so bright and cheerful, that I just had to snap a picture.

When I look at those pretty flowers, I’m reminded of Gary’s love for me over all these years, and how he showed it on this particular occasion. Gary shows his love for me every day in so many ways, but he knew that these flowers would be a very special way to demonstrate his love on our special #40 anniversary.

Later, I went out to the garage to talk to Gary while he whittled on a walking-stick he’s finishing. It wasn’t long, though, before we heard the familiar sound of Aaron’s fast walking headed in our direction through the house. He loudly opened the door and barreled into the garage, primed to talk about whatever was on his mind. So much for our quiet conversation, Gary and I both said without speaking as we looked at each other.

I became occupied with some things that needed my attention, soon realizing that Aaron had disappeared but had not gone back into the house. I stepped out on the driveway and sure enough saw Aaron at our neighbor’s house. He was standing at their pool talking to them as they were, I’m sure, trying to have a few moments of conversation without interruption from either of their young boys. After calling to him a few times, Aaron turned to come home, and I turned back into our garage.

A few seconds later, Aaron rounded the corner and ran excitedly into the garage. “Here, Mom!!!” he exclaimed. Into my face he thrust his gift…a decrepit looking and closed-up Dandelion.

Aaron was all smiles as he awaited my reaction, holding this unimpressive Dandelion under my nose. Honestly, my first initial impulse was to say something like this: “Oh Aaron, how sweet, but I don’t need a Dandelion in the house.”

Yet something stopped me as I saw Aaron’s huge smile and looked at how his eyes were sparkling with delight. So, I took the little Dandelion and instead thanked Aaron. When I did, Aaron spontaneously put his arm around me and gave me the sweetest side hug! If you know Aaron, you know how unusual this was! I hugged him back, a little awkwardly because I had been turning to walk away and because I was so surprised at his hug.

Aaron chuckled, full of satisfaction at his good deed. I told him to come with me and we would put this special flower in some water. This made Aaron very happy! When I put the browning and unimpressive Dandelion in a small plastic glass of water, you would have thought I had put a gorgeous bouquet in a crystal vase. Aaron grinned from ear to ear as he bounded back outside to talk some more to Gary.

I decided to put Aaron’s little gift beside Gary’s big gift, which only accentuated the smallness of this meager Dandelion. Yet, in no way was Aaron’s intent any smaller than Gary’s. Both were full of love, expressed in two different and yet two very sweet ways.

This is Aaron. He does, in the midst of his often perplexing and annoying ways, show us his love. He shows love on his terms and in his times, not usually on ours. But in allowing him this freedom we are also allowing him to be expressive in manners that suit him and that come from deep in his heart. It’s beautiful to see!

You notice I did say that Aaron can be annoying. Aren’t all of our children, at times? Yet never would I publicly shame Aaron as this teacher did to her student. Our special children often find it impossible to function as expected in our complex world, but they are rarely setting out to purposely be annoying. It’s up to us as parents and as teachers to understand this and to respond appropriately.

I don’t always understand, and I don’t always respond as I should. Like last night as I said goodnight to Aaron, why did I choose that time to mention his need of improving his showering skills? It took him a while to wind down from that, just when I am most tired, but what did I expect? There are times I need a lip zipper, for real!!

This morning I saw that Aaron’s closed and rather ugly Dandelion had opened fully and was a bright yellow. I showed Aaron, and he smiled a smile that was as bright as his Dandelion gift.

Our special children…ALL of our children…will open and thrive if given the opportunity. A little water and some light totally changed my little Dandelion. He still looked small beside the larger vase of flowers, but he has quite a large place in my heart.

Just like our Aaron. If given the chance, he can shine along with the biggest and the best. It’s just going to be in HIS way, and I need to know that this is a good thing. A very good thing!

I also need to remember to point out to Aaron his own progress and accomplishments. He loves hearing affirmation, just like he loved seeing his Dandelion gift sitting there looking brand new. It reminded him that he had made a very good choice!

I pray that Indiana special-needs teacher will understand this someday, too. And I especially pray that her student will be nurtured and will open up to his full potential…and that someone certainly threw away that awful “award!”

Included

Last night, I peeked into Aaron’s room and saw this:

THIS…is Aaron finishing The Meg movie by watching the credits. He keeps his eyes glued to the screen as if he is looking at the most pivotal part of the movie and wouldn’t dare look away. He knew that I was getting ready to go downstairs so that he and I could watch our nightly show.

“Mom, I’m almost done!” he said. “It won’t be long!”

To Aaron, the credits are a part of the movie. He will not end a movie when most of us say that a movie is over. No. The movie is over only when the credits end.

If Aaron starts something, he will finish it in his Aaron way.

Aaron has started something else recently. It’s not the first time we’ve seen him start this thing, but it’s the most recent. It’s not something that we can touch or see, but it’s something that we definitely hear. And feel…because Aaron feels it deeply.

I can explain it by telling what happened a few weeks ago. We were eating breakfast on a Saturday morning on our patio. Gary prayed before we ate. One thing he did was to ask God to take care of us, and also to bless and take care of Andrea and Kyle, and Andrew. He named them, but for us three sitting at the table, Gary just said “us.”

No big deal, right? Wrong.

Aaron’s head popped up after the prayer and immediately he said, “You don’t also want to love ME?!”

Gary NOT using Aaron’s name did NOT sit well with Aaron.

We talked about why Gary called us “us,” and explained that it had not one thing to do with not loving Aaron. Aaron finally hushed about it, but we could tell he wasn’t totally convinced.

Like I said, once Aaron starts something, he will finish it…sometimes weeks later. And even if we think it’s finished, one more little part of it may emerge at any moment.

Aaron has a very difficult time expressing his deep feelings in conversation. He also has a blind spot when it comes to seeing how he is affecting others at times. But to be so unaware of other’s reactions, he sure can see a difference sometimes in how we talk to him compared to how we talk to our other children.

For instance, when I’m on the phone with Andrea, Aaron will almost always stand beside me at some point and want to talk to her. He waits and waits until I let him have the phone, or turn it on speaker, and then he goes on and on and on about his latest movie or game. He doesn’t ask her about her life but gets his satisfaction by doing all the talking. Andrea responds so well, and Aaron loves it.

But Aaron has also observed that the way I talk to Andrea, and she talks to me, is different from how we talk to him. He doesn’t get why it’s that way, and he really isn’t able to change it, but he does know that our interactions with each other are not what they’re like with him.

This has been bothering him lately, and he’s been comparing himself to her or to Andrew. Therefore, he strives for attention…and Gary and I strive to give him a share of our attention while we are getting more and more tired of the striving.

The other night, Gary and I snuck outside and sat on our front porch. Just the two of us. Talking. Uninterrupted.

But then we heard the door in the garage close. Aaron popped around the corner. We were caught!

There Aaron stood, talking and talking and talking. Talking about Terminators and Trandoshians and clones from the Delta squad and visor modes…

Our brains freeze and our minds wander when Aaron talks non-stop. Then he asks a question, waiting for an answer, and we do a mental hustle trying to remember what on earth he was talking about. It’s a scenario repeated so often, and one that Aaron so often interprets as a lack of interest on our part.

A couple nights ago, Andrea texted during supper and sent us a picture of what is growing on the mystery plant in their yard. Grapes! It was fun to see the picture as we’ve all wondered if the plant was a grapevine. Gary and I were happy!

Then yesterday, she sent a picture of their first onion harvest from their backyard garden. And again, we were happy.

But Aaron was not happy. Once again, he sensed more enthusiasm from us about Andrea’s life than his. And once again we were doing damage control for much of the evening. UGH!!

This morning, Aaron was up and on his computer at 4:30. That’s 4:30 A.M!!! I got him to go back to bed, but he was up again not long after. And as I talked to him, he mentioned Andrea and her things and he hoped she wouldn’t call.

I sighed. But not where he could hear me. He heard me sigh once when I was on the verge of anger.

“Don’t breathe madly!!” he commanded me.

I went to the kitchen this morning, and then decided to do the hard thing that I didn’t feel like doing. I walked back upstairs to Aaron, sitting at his computer.

“Hey, Aaron,” I said. “Do you want some eggs and bacon?”

He did. So later, there we were, sitting at our kitchen table eating eggs and bacon. I wanted to be having my quiet time and talking to God, but here I was having a not-so-quiet time and talking to Aaron.

But before I prayed over our food, Aaron blew me away by what he said.

“I just want to be included,” he said.

That was truly amazing! And as we ate, I was able to assure him that he IS included in our lives. Yet no number of words coming from my mouth gave him assurance of that fact as much as my listening to HIS words coming from his mouth.

Really listening. Asking questions. Looking at his Ironman Guide Book that he ran and got from his room.

The flying fortress. AIM. Girl face statues. Titanium Man. The frozen ship. The brain controls that make you dizzy. And oh, SO much more!

Then I got a text on my phone.

“Better not be Andrea,” Aaron muttered. “Like her grapes and onions!”

I wanted to laugh but knew better. And I know better than to think that this inclusion and being loved business is settled. I know it isn’t. But I was very touched by how Aaron calmed and responded when he knew he had not only my full attention, but my full interest.

The credits on this part of Aaron’s life movie are still rolling, and we must show interest…and also guide him to know when it’s time for a break.

And that a break doesn’t mean exclusion!

God, give us and so many other parents like us the grace to love ALL our children just the same, even when the expression of that love is anything but the same.

Work, Work,Work!

I believe every family has sayings that have been passed down over the years – sayings made by family members and then repeated again and again. Often these comments are funny, laughed at every time they are uttered as memories of the person and the situation surface once more.

One of our family favorites is a comment made by Aaron years ago when he was very frustrated by having to pitch in and do some work around the house.

“Work, work, work!!” he exclaimed. “All I do is WORK!!”

No one understands the humor of his statement like we do. That’s because we all knew…and know…Aaron. He worked the least but complained the most. Now when one of us repeats that phrase with great emphasis, we all just laugh and shake our heads…just like we did when Aaron first said it.

I do believe we now have a new phrase, thanks once again to Aaron. Another one of many he has left us over the years, trust me.

Two weeks ago, Gary and I were packing up our vehicle for our annual trip to Houston. We travel there every April to see Andrea and Kyle, and with the added bonus of spending time with Andrew, who is there for an NHRA race.

This year we were taking lots of Andrea’s “stuff.” That’s because she and Kyle are married now, and have a house, so her “stuff” is hers once again.

We had many loads to carry out and put in our vehicle. Aaron was in the middle of all of it, talking and hovering, hoping that none of this activity was going to eat into our normal evening routine of watching a DVD or show. He seems to think that his presence will continually remind me that he is my priority.

So, we put him to work. He was willing to do so, thankfully, and really was a huge help. He helped lift the heavy electric piano into the van, as well as carrying box after box outside for us. Eventually, though, as we were nearing the end, Aaron’s impatience started to surface. He knew that I still had other things to do before we could watch a show. Bedtime was looming. His routine was already a mess, and his nerves were showing. He was excited at our leaving, with thoughts of all the restaurant meals awaiting him and his caregiver during the week, but also anxious at our being gone and his normal life being a little unhinged.

Aaron never offers to sit and talk about his feelings. Goodness, no! He doesn’t even understand what’s going on in his head and heart. But he does SHOW his feelings by usually hurting ours. Or by being confrontational, rude, stubborn…you get the picture.

His happiness at helping had turned instead to blame. He blamed his anger on us for making him work. He and I worked through all that for the most part, watching our show as he calmed somewhat, but then as I tucked him into bed later, he erupted again.

“Mom!!” he said. “You made me do servant work!! I don’t like SERVANT work!!”

It was so hard not to laugh! But believe me, all of us…minus Aaron…laughed a lot about what he said as we spent a few fun days together.

Servant work! Indeed!

In the week since we’ve been home, I’ve seen the other side of Aaron…the side that enjoys helping us. He wanted to help me cook supper one night, and then to send a picture to Andrea – who told me that it looked I was making Aaron do servant work again. 😊

He also wanted to share his Sonic mint with Gary that evening, so he put it on Gary’s supper plate.

This past Saturday, he asked if he could help me with some pruning.

He often takes our recycling to the container; brings down his laundry; sets the table; and other chores around the house.

Aaron is usually happy to help when things are going the way he wants. But when his version of normal is anything but, then helping becomes “servant work.” Not fun…not to be expected…not to be done!

I look at myself and I see this attitude of Aaron’s in me more than I like to admit, especially when it comes to caring for him. I’ll be honest. Taking care of a special needs child, even your OWN special needs child, is not all halo moments where we feel or act like angels.

Oh, my compassion is through the roof many times. Like when I sat in the ER with Aaron for five hours four days before our Houston trip, waiting for him to be admitted to the hospital for seizures the day before and very low sodium. Thankfully, we were sent home when his sodium level increased.

Home, where Aaron had a very long and a very scary seizure that evening.

His seizures, injuries, staples, stitches, missed fun days, so many meds, the look on his face as he held his Subway sandwich on our drive home…so many times my heart just breaks for him.

But then he has those behaviors, rigid routines, expectations of me, nonstop talking at times, anger…

Seizures that keep me home, having to change all my plans…and his. Extra laundry, sadness, worries for now and for the future…

A life unlike most of our peers for me and for Gary. Not able to up and go, to travel at will, to plan for a fun life of retirement trips.

Special needs parents weren’t given our children because WE’RE so special and God knew we could do this. God wants us to see that HE is the special One that we need, and that in no way could we live this life without Him and His grace and His strength. Goodness knows I have none of my own.

Many times, and many days, this life that God has given me can only seem like “servant work.”

But really, there are two kinds of servant work, and it’s my attitude that determines which I will experience each day…each moment.

When I think of how God wants me to serve in every situation, and when I do this servant work with that in mind, my attitude is one of inner joy and peace – even if outwardly things are crazy, and I am frustrated. My goal then isn’t about ME. It’s about Aaron, and to serve him in a way that pleases God.

But when I get in my own way and take my eyes off God…and like Aaron, things aren’t going the way I want…then I sometimes get angry and frustrated. When I do this, all too often, then I’m doing “servant work” in the way Aaron meant. Unpleasant, yucky, unhappy work that makes me bitter.

So, to all of us…and ESPECIALLY to my special needs parent friends…know that God understands. Just talk to Him when you’re exhausted, when you blew it, when you yelled at the child you love so much, when you’re envious of other’s lives, when you’re out of money and patience and even hope – just talk to God, lean on Him, and then know that each day is a new day.

A new day to do servant work, the way God intended. After all, we have the best example in Christ.

“Have this mind in you, which was in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but made Himself nothing, taking the form of a SERVANT, being born in the likeness of men.” (Philippians 2:5-7)

Servant work is God’s work, really. And He’ll give us what we need to do it the right way, every day.

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