Autism Spectrum – He Said What?!

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.

Wonderfully Made?

Today is World Autism Day. It’s a day to bring attention around the world to the issue of autism – its causes, its impacts, its uniqueness – and so much more. I can’t speak for others, really, but I certainly can tell you how autism has rocked our world.

I was a young wife but not a mother yet when Gary was in flight school at Fort Rucker, Alabama. He was learning to fly helicopters for the army, and I was learning the bare beginnings of how to be a good military wife. I particularly remember a warm Alabama day when I was outside our house on Sharon Lane, planting Zinnias, and wishing with all my heart that there was a baby – our baby – lying in a little crib inside. I thought that life would be complete if we had a baby.

The army moved us to Fort Carson, Colorado, and in another house we did welcome our little Aaron Daniel. He was perfect and tiny and complete, as was my happy heart. A baby! A son!

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I thought often of that stunning verse in Psalm 139:14: “I will praise You, for I am fearfully and wonderfully made. Marvelous are Your works, and I know this very well.”

Fourteen years later, I sat in a pediatric neurologist’s office in Tucson, Arizona. I watched him talk to and examine our son…our Aaron…not so little now, but big and complex and confounding to us. Gone were his sweet small innocent ways. He was instead often angry, agitated, loud, embarrassing, and the center of much unwanted attention.

Gary and I at first thought that our unusual and perturbing Aaron was this way because of the effects of seizures he had endured since the age of seven. Then we wondered if his behaviors were due to side effects from all his seizure drugs. Or puberty, perhaps, added to the mix?

But Dr. Gray turned to me and told me that Aaron had Asperger’s Syndrome. I was blank. I had never heard of this, and I had no idea what he was talking about. Only when he defined this syndrome as a form of autism did I have an idea…a small inkling…of what he meant.

But oh, little did any of us know what this REALLY meant. Not until you travel on this unknown path of autism, with its myriad displays affecting every area of life…ours and Aaron’s…can you understand autism’s daily, minute by minute, impact. Impact on Aaron…on Gary and me…and on Andrea and Andrew.

So, what was I to do now with that powerful, affirming verse from Psalms? You know, the one that so eloquently said that God makes each baby…fearfully and wonderfully designs each one. Really?

I choose. I choose to trust God, totally…or not.

And then, even in my trust, I look up the words I don’t understand. Really.

FEARFULLY: means to reverence – so I know that I am to look on God’s design of Aaron and deeply respect what God has created. I am to be in awe of what God has formed. Of WHO God formed in my womb. And trust me, some days I’m totally in awe of who and what I see in this son of ours…and not always in a good way! And even as Gary and I shake our heads, we do know deep in our hearts that Aaron is exactly who God formed him to be.

WONDERFULLY: (This meaning is the BEST!!) This word means to “put a difference; to distinguish; to show marvelous.”

Aaron NAILS this one, people! Oh my goodness, he is so different than the average bear…and he cares not one bit that he is! He distinguishes himself everywhere we go and in everything we do…and he doesn’t mind one bit that he does! AND…he does show himself…sometimes marvelous and sometimes not, at least in our way of defining “marvelous.”

I decided to use some words to illustrate a little of who Aaron is, showing some recent pictures to boot.

Aaron is BLUNT: NO picture to show here! But earlier today I told him he could go to Dillon’s with me, so from that point he was impatient to leave. He walked in the bathroom, where I was fixing my hair. Wanting to leave NOW, he stared at me for a few seconds and then said, “You could just go to Dillon’s on a bad hair day!” 😊

Aaron is PERSISTENT: Aaron talks and talks and talks and talks. The other evening, he followed Gary to the bathroom, standing outside the door as he continued to talk and talk and talk.

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Aaron is PRECISE: Look at his notebook in which he logs his times that he goes to bed and the times he wakes up each day.

Aaron is LOVING: He loves to share. If you have junk to get rid of, just let Aaron loose with it, and he’ll give it to anyone that he sees. He’ll also give away things that you prefer to keep. Anyway, he has a big heart. And he especially loves animals!

Aaron is TOUGH: He recently had 8 staples put in his head after a drop seizure on our stairs. Tough hardly describes all he has gone through over the years, physically and in other areas as well. But he was thrilled to get to keep those staples when they were removed…a trophy!!

Aaron is THOROUGH: Here he is yesterday, watching the movie credits with great intensity and delight. After all, movie credits are part of the movie and are to be watched! Totally. To the very, very end.

Aaron is RIGID: We want him to wear a helmet for a couple days when we think his seizure pattern may indicate that he’ll have a dangerous drop seizure. He does NOT want or intend to wear this helmet. His Aunt Sandra struck a bargain with him, saying that she would make and send him a toboggan hat to wear if he would wear his new helmet. So, he wore the helmet for an agonizing maybe three minutes. He DETESTS how it feels!! Tactile issues have never been ones he can overcome, from the time he was a little boy. Here the helmet lays, where it was ungraciously tossed by a very frustrated Aaron.

Aaron is FUNNY: He does make us laugh, some days more than others. He delights in the things that most of us ignore or take for granted…the cows in the field, the horses, things laying on the ground that he finds, funny commercials, store decorations, and on and on.

And I could go on and on about our Aaron. He truly is “fearfully and wonderfully made.”

In many moments, Gary and I don’t grasp that truth. Have no doubt, there are deep tired sighs that you will hear often in our home. We get frustrated, lose our cool, feel guilty, and then repeat the process again.

But also have no doubt that we know…we KNOW…that Aaron has been used by God to make a huge difference in our lives. He has distinguished himself as God has taught us more about Him and about us than we would most likely have learned otherwise. And Aaron has shown us just how marvelous God is in our weakness and in our pain and through our tears.

And God reminds us of how marvelous Aaron is, created with a purpose.

Yes, fearfully and wonderfully made!!

Salads and Seizures

Aaron walked into the kitchen on Saturday morning a little over two weeks ago – March 2nd, to be precise – and saw that I was boiling some eggs. Ever hopeful that whatever I am cooking will be something he likes and something I am making for him, he stopped and watched for a few seconds.

“Mom, what are you making?” he asked.

I told him that I was making his favorite salad. He stared blankly, as if he was utterly clueless about this favorite salad.

“You know, Aaron,” I continued. “The salad you love so much.”

“The salad with Ranch?” he questioned.

“No,” I told him. “You know, the salad with the eggs on top.”

Still blank.

“And the cheese and the bacon,” I explained.

“Oh yeah!” he finally said.

But he still gave no name to this mystery salad which really is his favorite salad! Aaron has such a hard time with names of people and pets and, amazingly enough, food!

“You call it Egg Salad, Aaron,” I told him. “But the real name is Seven Layer Salad.”

I knew he wouldn’t remember the name, but he knew it for now. It was fun to watch his happy reaction to the thought of this salad for supper…whatever it’s called!

We were looking forward to our day and our weekend. The day before, on Friday, Aaron had two seizures, and so he wasn’t able to go to his day group. He missed movie day, which always makes me sad. Thankfully, though, Aaron loves staying home and showed no regret at all.

On Friday evening, we all went to Wal-Mart to get Aaron’s weekend treats as well as some fun food for the weekend. We were expecting a strong winter storm to hit on Saturday evening and into Sunday, so there was excitement mixed in with our fun. We are snow lovers! I had especially waited until Gary was home from work so he could go with us, just in case Aaron had a seizure in Wal-Mart. We have learned that when Aaron has one or two seizures, he might have a drop seizure. These seizures, drop seizures, are so dangerous and unpredictable. This past year has seen Aaron have some serious injuries from falling. Thankfully, our shopping trip was uneventful and was fun for all of us, Aaron especially.

There were no more seizures during that night. Aaron was happy as could be to think of his free day ahead…the anticipated snow…making chocolate chip cookies with me…steak for supper…AND his special salad!! Whatever it’s called! 😊

Later that morning, before noon, Aaron was downstairs in Gary’s study. Aaron was talking up a storm of his own with Gary, as usual. I was in the kitchen, out of sight of the stairs. Suddenly I heard a terrible crash…and then the noise that I definitely recognized. A seizure!!

Gary was beside Aaron in an instant. As I started down the stairs, Gary told me to get towels. I was panicked and in tears as I ran for towels, hurrying them down to Gary. There was blood all over Gary’s hands. I knew this was serious.

As he started up the stairs, Aaron had fallen backward into a file cabinet, hitting the bottom metal handle with his head and actually bending it. Aaron is usually not conscious for a period of time after a seizure, sleeping soundly, but not on this day. He woke up, maybe because we were holding him and applying pressure to the gash on his head. Or perhaps he awakened because of the pain. He was combative and scared, something we’ve never seen. He was fighting us, trying to get away and go up the stairs as we held him tightly.

Finally, Aaron calmed down. He wanted to know why Gary’s hands were bloody, which of course was scary. We explained what happened and told him we would need to take him to the ER. Soon we were in the van, me sitting in the back with Aaron while Gary drove. Aaron was coherent then. The bleeding had stopped, but not his pain, of course. Yet he was remarkably calm and understanding, a trait he often displays in these frightening times. A gift from God, I’m sure.

I thought of other gifts from God as Gary drove. We talked about how thankful we were that the sun was shining and there was no snow yet. I was VERY thankful that it was a Saturday and Gary was home. And we were thankful still that there is a good hospital and emergency room out here in the country not far from our house.

We continued to be grateful that Aaron was seen immediately and that the CAT Scan showed no damage to his head or neck. Aaron was so compliant during the scan, even though it hurt his head and the bleeding began again, worse than ever.

But oh, how my heart hurt for our son! I couldn’t let him know that. Gary and I stayed strong for Aaron and for each other. I really wanted to curl up in a ball and cry, but God gave so much grace to be fully there for Aaron.

And there was Aaron, fully talking up a storm about nuclear bombs, of all things! Talk, talk, talk he did in his typical Aaron fashion. He knows a captive audience when he sees one, let me tell you!!

God gave special strength to Aaron, especially, as he endured 8 staples being put in his head. I knelt by his side, stroking his arm and face and talking to him during the ordeal. With each staple, he would flinch…eyes closed…and mutter a soft “ow.” I felt like my heart was being pierced each time.

I tell you, our children with medical issues…and I know a lot!…are true heroes. They endure more pain IN their lives, and disruption OF their lives, than I can fathom. And yet they just keep on going. One of our sweetest blessings is that Aaron doesn’t feel sorry for himself or complain about his lot. He LOVES to talk about what happens to anyone who will listen, trust me, and even to perfect strangers…but he doesn’t act like he resents this life that he lives.

However, once in a while, he does give us a glimpse into his heart and his thoughts. He did just that on Sunday as we made his cookies, lots of snow outside our windows, and his head still bandaged.

“Mom?” he began. “Saturday, I thought, would have been a good day, but it wasn’t.”

I really wanted to wrap him in a hug…which he would have promptly pulled away from…and empathize with him about what a bad day it certainly was. But I knew that I needed to point him to a principle that God points ME to, over and over.

Thankfulness.

“I know it was a hard day, Aaron, but it ended good,” I reminded him. “What did you have for supper?”

“We had steak!” he answered with enthusiasm.

“And what else?” I prompted him.

He thought a few seconds. I was hopeful that he just MIGHT remember the name of the salad.

“Triple egg salad!!!” he exclaimed.

Triple Egg Salad??!!

How on earth did Seven Layer Salad become Triple Egg Salad?!

Whatever.

So, for that moment, we were both thankful for Triple Egg Salad!

And in my heart, for so many other blessings as well!

No More Dog

Yesterday was the day that Gary and I have talked about and dreaded for so long. We had to say that final goodbye to our precious Great Dane, Jackson.

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What a beautiful and wonderful dog he was to our entire family!

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In 2007, Andrea really, really, really wanted a dog…a BIG dog! Gary and I really, really, really weren’t sure. But finally, we said yes and the rest is history. Jackson was born in May of that year, so he lived a good and long life of nearly 12 years, surpassing the normal life span of a Dane.

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After a few years, Andrea moved to Texas for grad school, and stayed there for career and now marriage. Jackson stayed with us and enjoyed visits over the years from Kyle and Andrea’s doggies.

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Aaron loves animals and Jackson was his special friend. Patient, kind Jackson tolerated Aaron’s noises, Aaron’s behaviors that sometimes scared him, and other behaviors that pleased him – like Aaron’s knack for sneaking him table food and doggie treats.

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Jackson also at times showed concern for Aaron’s seizures, such as in this picture shortly after Aaron awoke from a seizure.

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Many of you have asked how Aaron handled this loss of Jackson. Gary and I talked so much about how to tell Aaron when the time came. For months, Aaron knew that this possibility might become a reality. We talked about it a lot, but when our decision came, and the appointment was made, it was hard to tell Aaron that the “maybe” was now going to happen the next day.

We told him at supper on Monday that on the next day we were having to put Jacks to sleep.

“I don’t want to put him to sleep,” Aaron said. We told him that we agreed but we listed all the reasons it was necessary. Aaron was mostly quiet about it then.

As I tucked Aaron in bed that night, he said again that he didn’t want to get rid of Jackson, as he put it. But Aaron knew it was not going to change, much as we wished it could.

The dread hung over us all day yesterday, like a gloomy cloud. I wondered what Aaron would do when he got home from his day group, knowing that in a short while we would take Jackson to the vet.

“Can I give Jackson some treats?” Aaron asked. So, I told him to go ahead and give him all the rest of the chicken jerky treats in the bag, which were mostly small pieces, but to give them to him slowly. Of course, this happened.

Jackson was thrilled! And so was Aaron, most definitely!

The time came, much as we wished it wouldn’t. Gary and I got Jackson ready to go, making a potty stop in the yard. I ran up to Aaron’s room while Jackson sniffed outside.

“Aaron,” I said. “It’s time to take Jackson. Do you want to say goodbye?”

“No,” Aaron flatly said.

I told him that I understood and said we would see him soon.

Gary sat in the back of the van with Jacks, keeping him from falling as he was so prone to do. I pushed the button to close our garage door and was backing out of the driveway. Just as I got on our road, I looked and saw that our garage door was opening.

“Good grief!” I said. “We don’t have time for this!” I thought our door was malfunctioning.

So, as I pulled back into the driveway, with the garage door opening, I saw legs. And as the door fully opened, there stood Aaron in the middle of the garage…right at the open door…his right hand in the air, waving back and forth.

Bless his heart, he had indeed wanted to say goodbye. I will never forget that image of him standing there waving his hand to his buddy.

I opened the side van door, and Aaron walked outside. He stuck his head in the door.

“Bye, Dad!” he said.

He couldn’t bring himself to say the words to Jackson, but his eyes darted nervously to look at his friend. Then Aaron backed up, eyes still looking at Jackson. And as he started to walk away, he looked back one more time, still with scared eyes focusing on Jacks.

It was incredibly sweet and sad and broke down all my tough reserves as I cried all the way to the vet.

And Jackson, in what seemed like one final way of expressing his opinion of all this, pooped in the van! Served us right…right?!

When we got home and sat down to supper, Aaron did another amazing thing. He didn’t seem to mind at all that we had some tears, and if you know Aaron, you know how shocking that is. Aaron hates for anyone to cry. If I just sniff my nose, he instantly asks if I’m crying. He thinks crying is weird…but in reality, tears make him very uncomfortable and he doesn’t know what to say or do.

Later, after supper, Aaron and I sat down to watch some television. He was snacking on his new bag of Chex Mix. Suddenly, he jumped up and walked to the kitchen, returning with another of his bowls.

“Here, Mom!” he said. “I’m giving you some Chex Mix!” He proceeded to pour me some in the bowl he had gotten and bring it to me with a big smile on his face. And even though I didn’t really want it, I would never have said no after I saw his happy face.

You see, Aaron loves to share with people…most of the time. But sharing his food or his movies or his treasures…whatever he has…is Aaron’s love language.

And it was like he wanted to share a snack with me because I was sad. Kind of like he shared all those jerky treats with Jackson earlier, except I merited a bowl. Then he kept bringing me the bagel chips and the “twirly crackers,” as he calls them, that he doesn’t like…dumping them in my bowl with all the excitement he would have if he was giving me something of huge importance.

But this was of huge importance because it showed me that he cared that I was sad. Empathy doesn’t always come easily to Aaron, but on this night it did. So I ate the crackers that I didn’t really want so much, more for him than for me. Yet it WAS for me, too, because it was like a good medicine for my heart in so many ways.

Aaron, last night, agreed with our sadness and he showed it in the way that Aaron does…not with words or deep conversation…but with his actions. He tolerated our tears, and he shared what was important to him at the moment. I never tasted any better Chex Mix than what I ate last night!

This morning, after Aaron ate his huge pile of scrambled eggs that I made him for breakfast, he put his plate on the kitchen counter. Little pieces of egg were on the plate…little pieces that ordinarily would have gone in Jackson’s food bowl for him to eat, much to Aaron’s great delight.

“I was almost going to go out and put those in Jackson’s bowl,” I said to Aaron. “It’s hard to think that Jackson isn’t here.”

“Yeah,” Aaron replied. “No more dog!”

And he walked off with that, making his chuckling noise that isn’t a laugh. It’s like he’s satisfied with what he’s said…not necessarily happy but satisfied.

That’s the bottom line if I ever heard a bottom line. Just get to the point with Aaron. Say it like it is. Put things into facts, place them in a category, and move on.

But I know he thinks deeply and he feels deeply.

That goodbye wave and my Chex Mix will remind me of that for a long, long time.

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Special Aaron

No mother can ever forget the birth of their babies, each one so unique and completely amazing. That first baby, though, holds a very tender place in a mother’s heart. Our first baby was Aaron. He wasn’t loved more than our other two children, but that first birthing experience was one of a mixture of fear and uncertainty that culminated in total wonder at the little squalling miracle lying in my arms.

A son!! I remember a feeling washing over me that I had never experienced before. Total love. I knew that certainly no other woman could have ever felt as blessed and…well…as special as I did in those new moments of motherhood. I know now that this wasn’t true, but you could never have convinced me otherwise during those first fresh days of holding my little son.

I examined him from the top of his fuzzy head to the very bottom of his wrinkled toes. Every detail was so perfect. He was so tiny and complete…wispy eyelashes, button nose, tee tiny little fingernails and toenails…just every single part was truly a work of art from God.

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Lots of years have passed since my first introduction to motherhood in that old wooden WWII hospital at Fort Carson, Colorado. So many details of Aaron’s future, unknown to us back in 1984, have woven themselves into our own future now. Never, ever did we dream that our Aaron would continue to be defined as “special,” but now in the sense that we often call “Special Needs.”

Sometimes I still shake my head in disbelief at that title.

Yet there is no denying the reality of this path upon which God set our steps. Aaron’s first seizure in Germany at the age of seven led us to a diagnosis of Epilepsy. Seizures have never been out of the picture since that time other than for brief periods of reprieve.

Then later, at the age of 14, came the surprising diagnosis of autism…Asperger’s Syndrome. This wasn’t a common condition at that time. I didn’t even know what Asperger’s was. But we’ve all learned along with Aaron just what it means to live with what we call “Special Needs.”

It’s very interesting to look up this word “special.” It’s a word that we so routinely use that we don’t give it much thought. So, I did just that…I looked up this special word in the dictionary…and I was touched by just what it means to be special. Especially what it means to Aaron, and so to us as well.

SPECIAL: Distinguished by some unusual quality.

Our family would laugh at this one, not because we’re cruel but because Aaron has LOTS of unusual qualities. Many days I wish it was only one. Some are funny; some are annoying; some he repeats over and over; some are loud; some are very embarrassing….

SPECIAL: Readily distinguishable from others of the same category.

Well, that’s one way to put it. He’s very readily distinguishable when he stops in the crosswalk at Wal-Mart and holds his arms up just to be sure that traffic knows to stop! He’s totally distinguishable when I remind him to look UP as we leave the store and enter said crosswalk again so that he looks for traffic and not at his feet…and he stops in the middle of the crosswalk and looks up at the SKY!!

He’s also very likely to hover at the door of the nail salon like a stalker, watching the women getting their manis and pedis…fascinated by the smells and the sounds…but a little alarming as he curiously stares.

He whistles…he claps…he sings. Or he stands in the little restaurant in the Wal-Mart entrance and delights in the fact that the attendant thinks he wants to order.

SPECIAL: Being other than the usual.

Usual is so boring to Aaron. Some days I wish for boring. But Aaron does add a spark to life on most days. Sometimes a raging fire, honestly. Like Gary and I envisioned Friday evening in Cracker Barrel when Aaron decided to take the globe off the oil lamp…that was lit…with real fire. All was well. Nothing to see here, people at the table beside us. Move on.

But there is also one more meaning to this word…this special word. And this meaning is by far my very favorite.

SPECIAL: Designed for a particular purpose.

You see, Aaron was indeed designed by God, just as much as all the other babies ever conceived. He was designed for a particular purpose. I don’t always live in that reality, especially on the hard days. But I know deep in my heart that God made no mistakes with Aaron. God’s sovereign hand made Aaron just the way he is. It’s up to me to live in that knowledge, especially when I’m tired or upset or discouraged or embarrassed.

Honestly, one of the huge purposes that I’ve seen Aaron have in my life is to remind me of how much I need God. How much I need His love and forgiveness and patience and strength. How when I am weak, then God is strong FOR me and IN me.

Aaron reminds me to give:

Aaron reminds me to love:

Aaron reminds me to laugh:

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Aaron reminds me to enjoy life:

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Aaron reminds me to keep going when things are tough:

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And God reminds me of these truths:

For You formed my inward parts; You wove me in my mother’s womb.

I will give thanks to You, for I am fearfully and wonderfully made.

Wonderful are Your works, and my soul knows it very well.

My frame was not hidden from You, when I was made in secret;

And skillfully wrought in the depths of the earth;

Your eyes have seen my unformed substance;

And in Your book were all written the days that were ordained for me,

When as yet there was not one of them. (Psalm 139:13-16)

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My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening. I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures. I would rather have heard a seizure, honestly.

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels. I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook. I love sharing the very unique and humorous ways that Aaron speaks. His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word.

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00. He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set. But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer. When Aaron plays a game like this, he has a very hard time stopping it and saving it. He must reach a certain point in the game, and in his mind, before he will turn it off. For over an hour he kept repeating the same phrase, loudly: “I’m coming!!” Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time. We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out.

“Can we watch Bones, Mom?!! Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that. He was in such a tizzy. And he could tell that I was tired and didn’t want to stay up late. His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility.

Mom was mean. Mom was dumb. Mom didn’t care. On and on.

He turned his DVD on. Turned it off. More yelling. Turned it on. Turned it off. Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry. I wasn’t crying, but he didn’t believe me, so he stared and stared at me. And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much. He looked so funny, really, that in my tiredness I did the forbidden…I laughed. Aaron thought I was laughing AT him personally. He erupted and we traveled even further downhill than we already were.

It was a wild hour after that. He was in and out of his bedroom…in and out of bed…in and out of our bedroom. He was calmer talking to Gary…angry talking to me. Say goodnight, Mom…no, don’t say goodnight, Mom. I don’t want your goodnight kiss…OK, I do want your kiss.

He calmed when Gary came upstairs. He let me hug and kiss him goodnight. And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated.

My calmness during the whole episode only seemed to fuel his flames. The realistic, upset words I did say seemed to appeal to him more than soft kindness. So strange how that works. So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors. Seizures are scary and sad. Behaviors are exhausting and often hurtful. People feel sorry for seizures. But behaviors…what do you do with behaviors?

And behaviors leave me feeling like a very unfit special needs mother. I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me. Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort. But my tension was strong, too, and sleep wouldn’t come. My tossing and turning was keeping Gary awake, too, I knew. I would relax and then thoughts would wash over me. I would relax again and Aaron would stir, seeming to be restless as well.

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately. How could I have handled it differently? What should I have said? What should I have NOT said? Guilt for not liking Aaron when he’s out of control. On and on.

What I do know is that God is always there for me. He heard me last night, there in the dark, praying and confessing and praising. He knows my form. He knows that I am human and that I am weak and that I need Him, totally. He knows that I get frustrated and tired, and that I do love Aaron with all my heart. And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy. Some days…and happenings…make it harder than others.

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace.

That’s the kind of parent I need to be with Aaron. Forgiving him…understanding but not condoning…and opening my heart and my arms with love.

I have no superior wisdom or strength. I mess up…I give up…I look up. And there I find God, always understanding and giving me grace.

God’s a good Father to me, his special needs daughter. I need all He gives to me and does for me, for I have nothing of my own. He certainly didn’t choose me for this parenting role because of anything I have to bring to the table. He chose me because…well, I don’t really know. But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest. Which is often.

God loves me, His special needs daughter.

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care.

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