Category: Family

Monopoly On a Scrabble Board

I have a dear friend, Joyce, who has two sons with special needs. They each have significant special needs. Joyce is someone that I admire very much. I know she couldn’t handle all that she does apart from God’s grace. One day over lunch, she said the most profound thing to me. We were discussing some of the unusual ways that our boys function in their daily lives, and how we must function as their moms.

Joyce said, “It’s like playing Monopoly on a Scrabble board.”

That’s just one of the best descriptions I have ever heard about living with a child with autism, or many other developmental issues.

How on earth DO you play Monopoly on a Scrabble board?!! At first glance, I might say that you DON’T!! But as parents of our special children, we must. We have to be creative……flexible……think outside the box……and be very patient when all the pieces just don’t fit.

IMAG01746

The bottom line is this……we just don’t have a choice. So we take the Scrabble board and figure out our version of Monopoly, often writing the rules as we make the plays……and changing the ones that don’t work.

Aaron has been doing so well lately that I’ve felt like I’m mostly playing Monopoly on a Monopoly board. Imagine that!!

Oh, we always have our Aaron moments because that’s just how it is. But he’s been unusually happy and kind lately, both at home and at his day group. He’s even wanted to help more around the house, including in the kitchen.

IMAG01701

There are mornings that he hasn’t wanted to go to his day group, just like we don’t always want to get up and face our day. One morning he was getting upset about having to go to Paradigm, saying that he just doesn’t have a good time there.

“But Aaron,” I countered, “every time I pick you up, you say you had a good time.”

Not missing a beat, Aaron replied, “Well, the next time you pick me up, I’m gonna say I DIDN’T have a good time!!”

So there!!

He didn’t see my smile as he huffed out of the room. He ended up going that morning and having a good day, by the way.

This past Friday, however, was just the reverse. He left the house happily. We enjoyed listening to our oldies on the way to Paradigm. He was looking forward to some shopping and pizza at the end of the day, after I picked him up.

I pulled up to Paradigm and saw him sitting outside with his friends. His face was red and he was minus his glasses. I just knew…..and I was right. It had been a meltdown day for Aaron, and who knows why? He had broken his glasses….again…..but thankfully this time I was able to pop the lens back in. His staff was talking to me as Aaron sat in the van beside me, red faced from crying. So instead of shopping we just went to get his pizza and then head straight home, where we continued to sort out what had happened. His behaviors were wrong on several levels, and dealing with it would take a long time, I knew.

Hand me the Scrabble board.

And that rule book that I’m working on, continually.

Yesterday we took a walk in Swanson Park, stopping at the recycling bins on our way. The bins were full, so we couldn’t drop our things off then. We enjoyed the park, the fresh air and sunshine, and the deer that we saw. Aaron had a good time, despite complaining of a sore throat.

IMAG01737

Last night at bedtime I told Aaron that we might get some rain, and maybe some thunder and lightning. Aaron loves rain and he loves storms. He followed me up the hall after I delivered the hopeful storm news to him.

“What time?” he asked.

I told him that I didn’t know what time the rain or storms would come, but that if it happened, it would be later. As in not this very minute.

“Like when?” he asked.

I repeated that I didn’t know just when.

“Will it be later?” he continued asking.

Deep sigh……which he totally didn’t notice.

“Yes,” I affirmed. “The rain and possible storms could be later.”

I hoped to finally be finished.

Aaron followed me still.

“So we might not hear it?” he wondered.

The Scrabble board! Where’s the Scrabble board?!

Today Aaron is home with his cold. He is home with me, snorting because he doesn’t blow his nose.

I am re-reading the Monopoly on the Scrabble board rules about patience.

I was in the bathroom. Aaron stood on the other side of the door, happy because he had asked if we could try the recycling bins again. I had said yes, and had also told him that we would run an errand as well while we were out. Aaron sees all sorts of possibilities in the word “errand.” Most of which are in the form of food.

So there he was outside my bathroom door.

“Mom?” he began. “Are we going to recycle?”

“Yes,” I answered. “I said we’ll run an errand and do the recycling later.”

“What do you mean later?” he asked.

I wilted a little.

“Just later,” I replied.

A moment of silence.

“So what time?” he asked.

A Scrabble board in every room is what I need, with all the Monopoly pieces. Certainly in every area of life with Aaron.

 

 

This Is My Friend

Years ago a visiting couple walked into a local church here in Wichita, sliding into a pew near the back. Having a long history of working with special needs, the husband was amused to see a young man sitting in front of them with his grandmother……a young man with special needs.

“They follow us everywhere,” Scott whispered to his wife, Atha. They chuckled, and after the service Atha struck up a conversation with this grandmother. Of course she did. That was classic Atha, friendly and warm. And this grandmother couldn’t wait to find me.

“Patty!” she said. “I met a couple who were visiting here for the first time. They have a background of ministry with special needs. I’ve got to introduce you!!”

So at the first opportunity, she did just that. Atha and I talked and talked the first Sunday that we met, making plans to get together soon for a coke and more conversation. We met at Spangles one afternoon soon after, and as they say……the rest is history. We clicked. We understood one another. We were on our way to a great friendship.

Over the next couple years, Atha achieved her life’s dream of being awarded her PhD. I was so proud of her, though I had gotten in on the action late in her life and late in her dream. It was only as the years went by that I learned more and more of the sacrifice and grit that went into Atha achieving this goal. She had put this part of her life on hold as she mothered their three children, but all along she was very active in the world of teaching special needs and writing Sunday School curriculum for special needs for the Southern Baptist Sunday School Board. She taught students; she taught teachers; and she taught me.

1492414_10152006456478025_617893585_o

Atha taught me lots about special needs as we worked together trying to establish that ministry in our church. She taught me lots about how to teach students with special needs. She taught me lots about my own son, Aaron, although she was always quick to point out that I was the expert when it came to Aaron.

But what Atha taught me the most was what it was like to have a friend who loved unconditionally…….who stuck with me through good and bad…….who was there for me no matter how busy and complicated her own life was.

Scan

Her phone calls were regular and so welcomed, no matter what all she had on her to-do list. Our lunch dates were refreshing to me on so many levels. And every June we made sure that on our schedules we placed a very important lunch date……one at which we celebrated our birthdays. Atha’s birthday was June 15 and mine was June 18, so we would try to celebrate close to both of those dates. I would pay for Atha’s lunch, and Atha would pay for my lunch, and we would laugh and laugh.

 

Atha took my family as her own. Not only did she take Gary and our children into her heart, as did Scott, but she also grew to love our extended families. It didn’t matter that they were clear across the country in the mountains of West Virginia and North Carolina. She grew to know and love each one as if she had been a part of their lives forever.

Atha loved human beings and the stories that each person carried. She loved telling stories….she loved hearing my stories…..and she loved all the stories of the hundreds of people that she took the time to know and care for over the years.

A favorite quote from Atha tells so much about her: “Successful leadership begins with how you treat others. I challenge you to find time to be kind today.”

Atha definitely followed her own advice. No matter how busy she was as she worked to start her ADHD coaching business; taught college courses in multiple places; conducted seminars for teachers; and so many other activities……she still had time for those phone calls and visits. Time to keep in touch with me, to love me, and to be there for me no matter what. To teach me one of her most unforgettable lessons – to be established in my purpose.  https://hesaidwhatks.wordpress.com/2016/03/09/my-purpose-2/

Atha and I started going to different churches three years ago. We truly missed each other on Sundays. But I would often get a text from Atha on Sunday. “Are you worshipping?” she would ask. Or after church, she would ask what songs we sang. She and I would compare songs, and talk about what they had meant to us. Sometimes she would even text during her worship service to say, “We are singing Great is Thy Faithfulness!” That was our favorite song, one which encouraged each of us so much. We would talk about the sermons we had heard, and Atha would ask what I had learned. Ever the teacher. Ever concerned.

Atha began having some significant health issues last fall. On Dec. 26, I got a text from her son, Kyle, telling me that they were taking Atha to the ER. The day was very grey, cold, and icy…..just like my heart felt as I worried about her all that day. It was discovered that in addition to some other issues that had plagued Atha’s body, she had also recently suffered a stroke. I was shocked when I first saw her in the hospital. How sick and tired and old she looked!

On one of my visits to the hospital to see her, two CNAs came in the room to clean her. I sat behind the curtain as they worked. Soon, in typical Atha fashion, she looked at the young man and said, “Young man, what do you want to do with the rest of your life?” He stammered around for an answer, not expecting such a question from this little sick woman. I just smiled. He didn’t know my Atha. She then proceeded to instruct him on setting goals and achieving them. I bet he never forgets her.

Weeks went by, with Atha sometimes rebounding and giving hope that she would recover, only to be followed by a downward turn. She would fluctuate between rehab centers and the hospital. On some of my visits with her, she would talk in her special way….slowly and with difficulty, but still like her old self.

IMAG01509 - Copy

“What do you know today, Patty?” she would ask. She didn’t want to talk about herself, but I felt guilty talking about me and my family and my issues, so small compared to hers. But that was Atha, always concerned for me above all of her own cares.

One day in the rehab center, she was very vacant. I was worried. I couldn’t get her to engage in conversation and she seemed far away. A therapist came over to her and asked Atha to tell her who I was. Atha looked up, brightened, and said, “This is my friend, Patty Moore.” Just like she always used to do.

On Monday, March 21, I sat by Atha’s bed at the hospital. She wasn’t doing well at all, but we still hoped for a full recovery. She kept her eyes closed, but she often did that. She didn’t talk. I opened my little Bible and held it up close as I read her some Psalms. Every little bit Atha would quietly say, “Amen.” That was all. Then she asked me to pray for Jesus to heal her, so I did. And before I left, I told her I loved her, my friend. And she said she loved me, too.

On Thursday, Sarah got the call about end of life issues and hospice. No one could believe it was happening. I spent part of that evening with them at the hospital. Before I left, I leaned down to my mostly unresponsive Atha. I said some things to her, and then I told her that she would always be my dear friend. Very softly, she spoke to me. One word.

“Friend,” she said.

Atha was moved to hospice late that night. I saw her on Friday and on Saturday, where a little twitch of her mouth was the only response she gave me. On Easter morning, a gloriously beautiful morning with a soft snow and bright sunlight, Atha went to heaven. How significant that her home going was on Easter! Atha always knew how to do things right.

This morning, a couple walked into a local church here in Wichita and slipped into a pew near the back. They were dreading this day. He put his arm around her as she fought the tears that were forming. Gary and I were here for Atha and for Scott, like they had always been present for us. But I just never dreamed it would be in this way. Never in a million years.

Many people were in that church this morning to honor Atha. As part of the service, people were given time to tell their stories of Atha…..of how they knew her…..of what she meant to them…..of how she had impacted their lives. She would have loved the stories, even though they were about her. She did love hearing and telling stories, after all. It was wonderful to hear just a small sample of how she had blessed and helped so many.

I’ll always treasure the many Atha stories I have tucked away in my memory and in my heart. Too many to tell here, that’s for sure. But suffice it to say that the best thing that Atha could ever have said to me is the last thing she ever said to me.

Friend.

And with that, I am beyond blessed.

This is my friend, Atha McNay.

1914503_10153279256156895_827625779676576061_n

 

The Detour

Aaron and I were in Dillon’s last week, where I told him to pick out some items for his Friday snack bag. I usually have his goodie bag all ready for him when he comes home on Friday but this week had been full of unexpected things that had made it impossible for me to have his bag done beforehand. He never minds picking out the items himself even though he also loves it when his bag is full of surprises. His treat bag is a reward for a week well done by Aaron…..or at least done, sometimes not all too well.

Better behaviors = bigger bag. Or so that’s how it was meant to go. Like his former teacher, Mr. Z, used to say – “Sometimes you have to make it worth his while.”

Aaron, ever the clever one, sometimes calls it bargaining. Nothing much slips by his awareness.

Anyway, it’s fun to give him something to look forward to and to work for at the end of his week. On this particular Friday, he had already walked fast and eagerly toward the bakery aisle where he knew there would be a container of croissants waiting for him. I gave my permission as he held the treasure up for me to see, but I said no to his hopeful request for TWO packages as he held up the second one for me to approve. Aaron just laughed, not at all surprised to be vetoed on that one, and then he lunged past the meat section toward the candy aisle……but not before stopping to loudly point out the lobster and shrimp like he always does. I could really just have a recording of my comments as we walk through the store on most days. He’s so predictable in many ways. In other ways, not so much.

Aaron turned left down the candy aisle, seeming oblivious to the sample lady standing nearby. This pleasant young lady had my attention, though, so I stopped at her little table to acknowledge her offer. I was distracted for a short time with little Twizzler samples and water flavor enhancers, chatting away as I am prone to do. We finished our brief conversation, said “Have a good day!” with our smiles…..and I noticed that her eyes darted down the candy aisle that was just behind us and her smile grew even larger.

I turned around and instantly knew why as she said, “Looks like he’s found some candy!” There was Aaron, getting down and personal with the Starburst Jelly Beans.

IMAG01668

And there was a man coming right toward him, pushing his cart and just looking at Aaron. I’m used to Aaron sitting down in store aisles when I’m not there to tell him no, but I imagine this man wasn’t at all sure of what was happening here. I was telling Aaron to stand up, but Aaron doesn’t stand up quickly from a sitting position…..and it’s quite a sight to see when he does……so now this man just swerved around Aaron and gave me a kind smile as he passed us.

I smiled back, thankful that he didn’t scowl or stare awkwardly.

At times like this I just need to have a sign that I can hold high. A sign that in bold letters says – DETOUR!!!

Aaron is truly completely clueless that he has done something a little strange or that he is disruptive. We face these moments constantly in his life. It’s just who Aaron is, and it’s who we must be as well.

We often must take a different route to our destination with Aaron, and hope that we arrive there…..and in one piece. What worked for our other two children didn’t work with Aaron and often still doesn’t. When our children were younger there were many moments of frustration from them as they tried to understand their unusual brother. They both went through times of questioning, as did Gary and I, about why Aaron acted the way he did. Even after the diagnosis of autism, we still struggled to understand what made Aaron tick.

There were times that Andrea and Andrew thought that Gary and I didn’t discipline enough. That we gave in too much. That we let Aaron have his way too often. Now that they are adults, things have settled down a lot and they really do understand their brother. They love him to pieces. It just takes time, education, and a little maturity to come to grips with a brother who can be disruptive and annoying……and super embarrassing in public!

We could be rolling right along in life and before we knew it…..DETOUR!!

A detour because of Aaron’s behaviors or actions…..a time we were forced to recalibrate…..to try to understand and to work through a situation. Or to be uber patient or thick skinned, despite the red on our faces or the words we wanted to say but couldn’t…..to Aaron or to insensitive others.

After all these years, when I turn and see Aaron sitting on the floor like he did at Dillon’s, it makes me laugh. He does look pretty cute and funny sitting there. I think people now are more aware, too, of these special needs. Their smiles and looks of understanding are more encouraging to us parents than they probably realize.

To you parents of special children, just keep the lines of communication open as much as possible with your other kids. Let them vent without judgment. Understand that age, hormones, peer pressure, and so many other things weigh into their reactions to their special sibling. Things WILL settle down with time. And in the meantime, try to spend some one-on-one time with your children, a time where they know they can safely talk to you and that you will have empathy.

And remember that we often have to take a detour, going around issues in a different way than we normally would, because that’s just how life is in their world……and we can’t change that.

Later Aaron shared some of his jelly beans with me. That’s the way it is. Understanding and love lead to sharing and sweetness.

Sticky and germy sometimes, but still it’s sharing, done Aaron’s way.

The DETOUR way.

The Waiting Game

It all started a few weeks ago with a commercial that Aaron and I saw on television during Wheel of Fortune. There was Ronnie Milsap, playing a piano as he sang one of his signature songs. For some reason, Aaron was captivated. Maybe I made a comment about Milsap. I don’t really remember, but from that point Aaron was on a mission. His mission, that he gladly accepted, was to find a Ronnie Milsap CD. Of course, Ronnie Milsap CDs are virtually impossible to find on store shelves. We did find the Ronnie Milsap insert at Wal-Mart that showed where some CDs used to be, but none were to be found. This discovery just further fueled Aaron’s desire to find some Milsap music, but several stores and phone calls later found us empty handed.

Aaron knows that when one is empty handed, there is always…..AMAZON.COM!!!! His answer to every fruitless search on the planet is found….in his opinion…..at this amazing Amazon place. And Aaron, knowing that Mom was weakening in her search, knew something else. He knew that one should strike the iron while it’s hot, and that if Mom was on the amazing Amazon for one item, she might…..just might…..order two items while she’s at it. Or even THREE!!!

So Aaron used his very favorite internet tool…..GOOGLE. And on Google he found an epic disaster movie that he decided he could not live without.

10.0 EARTHQUAKE!!!!! Predictable story line…..cheesy acting…..unknown actors……painfully unbelievable….

In other words, the perfect movie in Aaron’s professional opinion. And trust me, he knows ALL about terrible B disaster movies.

So this past Tuesday, Aaron hovered behind my chair as I ordered The Essential Ronnie Milsap CD……10.0 Earthquake……and The Essential Charlie Daniel’s Band just for fun.

Aaron’s hounding and hovering surely paid off, he was thinking.

And then it began. The countdown, all too familiar to me. And a big reason that I really wanted to find Ronnie Milsap in a store, where I could buy the CD outright without the wait.

I had barely gotten out of my chair after placing the Amazon order when it began.

“Mom, when will it come?” Aaron asked.

“It’ll be a few days, Aaron,” I answered.

“So when will it get here?” he continued.

Oh dear. I was thinking that paying the whopping postage charges for overnight shipping might have been worth it. I didn’t want to tell Aaron that Amazon had said 4 – 6 days. Why not? Because then Aaron would want to know which it would be. Four days? Or six days? If four days, then that would mean Saturday. If 6 days, then that would mean Monday. We would be in constant uncertainty as he tried to nail down the four or six day business. Nope. So I made a decision at his next inquiry, which was soon in coming when I didn’t answer the previous one.

“Mom, how long will it take?” he queried.

I told him it might take a week. That’s a nice solid guess.

“A week?” he confirmed.

He thought for a few seconds.

“So……next Tuesday?” he asked.

“Maybe,” was all I would venture.

“So if it doesn’t come on Tuesday, then you lied?” he continued.

There is no winning in this waiting game with literal Aaron.

There were more questions that day, and the next.

Will it come in a box?

Will it come to the front porch?

Will it come to the mailbox?

We were 24 hours into the amazing waiting game from our amazing Amazon order, and I was already exhausted from Aaron’s desire for definitive answers.

On Thursday morning, Aaron was up before 6:00. I was NOT ready for that! And I was really NOT ready for this, the first words out of Aaron’s mouth as he stood in the kitchen.

“Mom, you said it might come in a week?” he asked.

“Yes, Aaron, it might come in a week, but we’re not sure,” I answered.

“Why might it come in a week or not in a week?” he wanted to know.

Here, Aaron. Drink your coffee and get back with me later.

On Friday, it went like this: “Mom, I think my video will come on the 15th.”

“What day is that?” I asked him.

“It’s another Tuesday,” he told me.

Tuesday to Tuesday is a week, and Aaron was hanging on to that hope.

Saturday: “Mom, what time does the mail come?”

AHHHHHH!!! With another nebulous answer, Aaron just walked away in disgust.

He stood at the window later in the afternoon, eyes hopeful as he watched Gary remove the envelopes from our mailbox. Was that a package that Gary removed?

Yes! YES!!!! Dad had a package. Could it be?

I was thinking it BETTER be!!!

And yes, finally Aaron held his long awaited amazing Amazon package! He was all smiles…..but no more so than me! Inside was Charlie Daniels, Ronnie Milsap, AND 10.0 Earthquake!!!!

IMAG01636

Aaron asked if we could listen to Ronnie Milsap later while I fixed supper. I agreed. He stood in the kitchen for a song or two, but before I knew it he had gotten a dining room chair and perched himself in it as he listened.

IMAG01639

He was pretty cute sitting there happy as a lark, listening to every word of every song. He kept the CD holder close by, and at the end of each song he would look to see what the next song was.

“Mom, Smokey Mountain Rain is the next song!” he would announce, rubbing his hands together in delight.

Ronnie Milsap continued to croon during supper, with Aaron trying to hear every word and every note.

Of course, I watched the stellar Earthquake 10.0 movie with Aaron later. It was as awful as I knew it would be. Aaron yelled and clapped and had a great time. I endured.

“Mom!” he said at one point. “Your face doesn’t look like you like this movie!”

Sometimes his powers of observation are very acute. So I worked hard to rearrange my face and act interested. Aaron kept turning his head in my direction, matching the look on my face with my level of interest. 87 minutes. I was a far better actor than any of those unknowns on the screen, let me tell you. 87 minutes of fake interest should earn me an Oscar!

Well. Things should be a little more settled down here. The amazing Amazon package arrived….and in LESS than a week! We have fun new music to listen to, and I already checked off watching another lame movie so I don’t have to hear Aaron ask me every day about when I’m going to watch it with him.

Tomorrow Aaron has a doctor appointment in the afternoon. I will go to my Bible study in the morning, then come home to pick him up for our usual “Doctor Day Lunch Out.” I can hear it now.

“Mom, when will you go to Bible Study?”

“Mom, when will you be home?”

“Mom, where do you want to go eat?”

“Mom, what time is my doctor appointment?”

“Mom, what time did you say you’ll be home?”

“Mom, what time are we going to lunch?”

Another day…..another chance to enter Aaron’s world and to hope he can tolerate mine as well.

 

Simple is Good

I can hear our Kansas wind outside blowing like crazy. We’ve had several days in a row of very strong winds, typical for flat Kansas. I can also walk by a mirror and see that I’ve been out in the wind as I look at my fly-away hair!! The winds remind me of living with Aaron in many ways. He’s like shifting winds most days. We never know what we’ll wake up to find with Aaron as far as his mood or his physical state or his general attitude.

Lately, though, he’s been mostly very happy. I wrote about that a couple blogs ago. It’s been fun for us to experience, and definitely a relief for the staff at his day group, I’m sure.

But I should have known that on the very next day after posting my happy blog, Aaron woke up in a mostly grouchy mood. Why does that happen? Anyway, he kept coming into the bathroom where I was putting on my makeup, fixing my hair, and doing all my getting ready things that morning.

“Mom, can you hurry?” he impatiently asked.

“Mom, why are you taking so long?”

“Mom, did you clean my glasses?”

“Mom, why aren’t you ready?”

I know that when he’s like this it’s better to mostly ignore him instead of returning his impatience, so that’s what I did. But not before I made one observation.

“Aaron,” I said. “You were so happy yesterday. So why are you angry this morning? What happened during the night?”

He just stood there and stared at me. I continued with my face preparation as he stared. Then he simply turned and walked out of the bathroom.

Soon he was back, of course.

“Well, All Star is boring!” he informed me. “I found that out during the night.”

It was really hard not to laugh. So that’s what he found out during the night? That All Star Sports, their activity for that day, was boring? Since when?!

Aaron went on to his day group and he had a reasonable day, from what I was told. I went in to his day group with him to talk to Barb about whether Aaron and I could take supper over to one of their residential homes on Friday. Aaron’s best friends, all girls, live there and he had been wanting to go back there again as we have done in the past. It cheered him up to have that planned at last. This was on Wednesday.

The next night, Thursday, Aaron had two hard seizures during the night. He stayed home on Friday, feeling crummy, but wondering over and over if we could still go to “Shawna’s house,” as he calls it. He insisted on going to get a few groceries with me, walking like a zombie through the store. He slept off and on during the day, but had no more seizures. We did take chicken enchiladas and No Bake Cookies to his friend’s house. I was so thankful that it worked out for Aaron to do that. He slept all the way there and most of the way home, but he had a good time at their house as we sat around the table, eating and talking. The girls had missed him that day at Paradigm, and they were so sweet…..rubbing his back and asking him how he felt. Each of them has significant special needs, so it’s just very touching to see them worry about Aaron.

Aaron was in bed a little after 8:00 that night, totally exhausted. But he kept coming back downstairs to be sure that it was OK for him to go to bed so early. It was fine with us, but not so much for Aaron and his rigid schedule. Bedtime is 10:00 or later!! Not 8:00!! But he slept for 12 hours and woke up a new person.

A very new person!!

Look at what Aaron did with Gary and I on Saturday.

IMAG01624 1

Aaron, who resists most work…..and definitely yard or garden work….actually got outside with us and helped!!

IMAG01619 1

And he helped happily!!

IMAG01623 1

He gathered up the big Crepe Myrtle limbs that I pruned, and he pulled up old tomato stakes with Gary in our garden.

IMAG01625 1

And Jackson supervised all of us.

IMAG01626 1

It was a really a pleasant afternoon, and a surprising one for us as we watched Aaron willingly help.

Simple pleasures mean the most to us. The warm sunshine, the fresh air, trying to find the pecking woodpecker we heard, laughing at Jackson encounter our neighbor’s trying-to-be-brave cat, and ending the day with a simple supper…..Wheel of Fortune and Blue Bloods…..and a couple games of Skip-Bo.

The older we get, the more we know that simple is good. Simple is better for Aaron. And the things that make him happiest inevitably do the same for us as well.

Too Often Unsung

I’m about to make somebody very uncomfortable today. That’s not my intention at all. But I know this somebody very well and I know that this will be the result of what I am writing. This somebody is my husband…..my friend…..my Gary. It’s not his birthday. It’s not even our anniversary. I just want to give a big thumbs up to this man who does so much for me and for our family. He doesn’t like lots of attention. Sorry, dear.

I watched him spend hours…..HOURS…..this past weekend on my blog. He tried to fix the problems with my old blog. It took forever! He finally realized that there was no way to go forward with it, so then he dug in and got me started on this new blog site. It took lots of work to get it up and running, and to understand all the in’s and out’s of it. I still have questions, but it’s so nice to know that I can go to him for answers or that we can work it out together. And all of this work he did while he was coming down with the respiratory crud that his co-workers so kindly shared with him.

This little venture of mine…..this blogging and writing that I love….is important to him as well. I can’t express what that means to me. Yet what I do has always been important to him. He has worked hard in both the military and civilian world to make it possible for me to be where I desired to be – at home with our children. He supported me in our many years of home schooling. And he supports me now as I continue to be with Aaron. WE continue to be with Aaron. I couldn’t do it all without Gary.

He’s a loving husband, appreciative and kind.

1483964_10201828591789060_1483355212_o

 

He’s also a very hard worker at home.

10860857_10152533291606895_2245022707411653389_o

And always has been…..and continues to be…..a fabulous dad.

To Aaron:

IMAG00553

To Andrea:

20130628_122218

To Andrew:

1267207_10151588512496895_531827598_o

I am very blessed, and I am very thankful, for this man in my life. I just hope he still speaks to me after he sees this.   🙂

I love you, Gary!

 

 

 

You Might Live With Autism If….

 

Here are a few snippets of life with Aaron from the past few days – otherwise known as:

 

You might live with autism if:

 

·       You poor one cup of coffee for Aaron, knowing that he always has three cups.  You tell him that you are brewing more coffee and will pour his other two cups when the fresh coffee is ready.  But he won’t let you take the one cup to his room until the other two are poured and ready to go.  You don’t take ONE cup of coffee to his room…..ever!  You take THREE cups!!

 

 

 

·       You hand him a piece of sausage that he wanted in a napkin, to be eaten similar to a cookie.  Silly you!  Sausage goes on a plate, not in a napkin.  You just do it with no argument, because you know that arguing about these critical matters is useless.

 

 

 

·       Aaron has watched four seasons of The XFiles.  For Christmas he received the remaining five seasons.  He decided to finish watching The XFiles, but instead of starting with season five, he is going to start watching from the beginning – again.  You try to talk him into just starting with season five since he’s already watched the first four and he seems to agree, but later walks back into the room, obviously in discomfort.  You give your blessing to him starting with season one, despite how long it will take now to watch the entire series….because you know he’ll do it that way anyway.  So you may as well remove the burden from his shoulders and let him fully enjoy the ENTIRE series, watched the way he wants….all together the way they should be.

 

 

 

·       Aaron had a couple seizures during the night, so on Saturday he was very tired.  He decided to lay back down later in the morning.  Then you have this conversation:

 

Aaron – Will you get me up?

 

Me – Sure.  What time do you want up?

 

Aaron – Before 1:00

 

Me – OK, I’ll get you up before 1:00.

 

Aaron – What time is that?

 

Me – I don’t know.  Just sometime before 1:00.  What time do you want that to be?

 

Aaron – I know!  Get me up at 1:00.

 

Bedroom door closes.

 

Bedroom door opens.

 

Aaron – How about 12:30?

 

Me – 12:30?  Are you sure?

 

Aaron – No.  Let’s do 1:00.

 

Trust me.  I got him up at 1:00.  Not 12:59.  Not 1:01. 

 

1:00!!

 

 

 

·       Aaron has a bad headache after having seizures.  While we changed his sheets, because it was Saturday and we always change sheets on Saturday, I asked him how his head was feeling.  He told me it still hurt, so I made a sound of concern.  You know, a soft murmuring sound…..mmmm.  Aaron’s response:  “You’re weird, Mom.”  He doesn’t appreciate soft murmuring sounds of concern….or crying…..or most hand gestures…..

 

 

 

You might live with autism if:

 

·       You go on a walk with Aaron and he finds a “thorn seed pod,” as he calls it, and he carries it proudly home.  It is given a place in his room among all the other treasures he has found on walks, in stores, at his day group, etc.

 

 

 

·       You go on another walk and Aaron finds a feather this time, which he carries for the remainder of the walk, trying to feed it to our Great Dane…who has no interest in feathers that anywhere matches Aaron’s.

 

 

 

·       You go to the grocery store and as you look up from the self check-out register, you see Aaron sitting on the empty display shelf in the front of the store.  Smiling.  Content.  Not one bit embarrassed. 

 

Which is how I know I should be with Aaron, even after I say, “Let’s go, Aaron.”  And he answers with, “OK, babe!” 

 

“How come you say only Dad can call you babe?” he asks for the zillionth time. 

 

And for the zillionth time, I know that life will never be mundane or usual with Aaron. 

 

You might live with autism if:

 

·       You know it’s really all right that life will never be mundane or usual with Aaron.  Most of the time it’s fun.

 

 

 

·       You think of song titles at times like this.  Titles such as “I Like You, Babe.”

 

 

 

·       And thinking of what Aaron says, not all the time but most of the time, makes you smile.

 

 

 

 

 

 

The Scar

 

It’s been an interesting week.  I guess that’s one word to describe it.  Other words would apply as well.  Stressful…..demanding…..concerning…..worrying.  In case you’re wondering what I’m talking about, you can read about it in the blog I wrote.  Here’s the link:

 

 

It hasn’t just involved Aaron, though.  Yet he certainly does take center stage in our lives.  All the above descriptive words certainly can, and do, apply to him.  I’m reminded of our bad beginning to our week now every time I walk into his room and see this.

 

 

“This” being the place on his wall where a picture similar to the one hanging USED to hang.  Used to hang before he yanked it off the wall in a fit of anger on Tuesday….after fits of anger on Monday.  Anyway, read my last blog, like I said.  It explains more about what happened.

 

Now we’re left with the ugly reminder there on his wall.  A reminder of a bad day….of hurt….of anger….of events that led up to this ugly scene and this ugly spot on his wall.

 

A scar.

 

It would be easy to see this scar and to focus on the bad things that happened that day.  It would be easy to see this scar and to remember the awful feelings….the frustration….the anger…..the failures.  Both mine and Aaron’s, for sure.

 

However, there are other parts to this whole story, too.  There are other pictures that I can choose to focus upon if I just will.

 

And there it is.  It’s a matter of my will, of my choosing, as always.  I can choose to only conjure up the depressing thoughts of those two days, and of this past week generally, or I can instead choose to ponder also on the bright spots.

 

On Monday evening, after Aaron’s really bad day, he suddenly asked if he could write our friend Atha a note.  He knows Atha, and he has heard us talking about her stroke.  Aaron rarely offers on his own to write anything to anyone, unless it’s what he wanted to write on a sticky note about me on Monday.  It wasn’t nice, either.

 

So this idea of his to send Atha a get-well note in his own words was just a very special, unexpected warm moment in the midst of a terrible time for him and for us.  That made it a double blessing.  A very needed blessing, double at that!!

 

 

I can look at the scar on Aaron’s wall and I can remember this precious note.

 

Also to be remembered are the prayers of friends and family….the kindness shown when aware of our need….the time spent with friends and the encouragement of warm hugs.  There was Julie, an employee at our Dillon’s, who asked me out of the blue if I needed any more one dollar bills for Aaron.  It’s not easy to get the ones when I need them, and I had forgotten in my stress that I was running low, but Julie saw me and asked me….said she thought I might be running low….said she was looking out for me.  She has no idea, though I told her a little, of how much that meant to me this week.

 

The scar on Aaron’s wall can remind me of all those blessings.

 

And there is the recliner at Dillon’s – two recliners, actually – that Aaron sat in the first time he saw them.  They were something new.  Something fun!  But probably not something that Dillon’s wants everyone to sit in and enjoy like Aaron does.  J  So the next time we saw them, in front of the registers, each chair held a huge stuffed animal.  I laughed and told Aaron that now he couldn’t sit in them since they were already occupied.  I figured that Dillon’s had a motive for putting those animals there.

 

On Friday, Aaron and I were there after I picked him up from Paradigm.  We were ordering him his favorite Cheddar Pasta Salad when suddenly he took off walking briskly toward something.  I thought he was headed to the Chinese side of the deli.  He LOVES looking at the Chinese food, and having the workers ask him what he wants while he laughs and says he’s just looking.  Every time.  But on Friday, when I looked up to see him walking away, I soon saw where he was headed.

 

 

Yep.  He spied the recliner, moved to a new spot in the store.  The empty recliner….but not for long.  Look at his smile.  How could I not smile?

 

I see the scar on Aaron’s wall and I see the choice I have to make.  Aaron knows he did wrong and he knows he must wait for the wall to be repaired.  I don’t need to keep hammering that home to him.  But there are some issues that sometimes need hammering into my brain as I look at his scar.

 

What will I allow that scar to teach me?  What will I allow that scar to do to my heart and to my spirit?  Will I use that scar to remind me of the bad, or will I use that scar to let me remember the blessings in the midst of pain and the lessons learned in the hard times?

 

We all have them, those ugly scars of life.  We can wallow in anger and unforgiveness….regret and guilt…..pain and sadness.

 

Or we can choose to do what God said and forget those things that are behind, and press forward.  I know we can’t really forget, but we can forget in the sense of clinging on to them and letting the defeating thoughts control us.  What’s done is done.  Let God handle it as you pray and trust.

 

And as you forgive those that have hurt you, whether they know it or not.  Like Gary said on Monday night, our relationship with Aaron is much like God’s relationship with us.  It’s one of constant sin on my part and constant forgiveness on God’s part.  How can I do less?
I want my scars to be touch points for memories of God’s grace in my life, and then for me to extend that grace to others…..including….especially!….Aaron.

 

 

 

A Little Understanding, Please

I shouldn’t have let Aaron go to his day group on Monday.  His mood was pretty foul at home, but he wanted to go and so I let him.  He only wanted to go because he knows that having a special meal on Friday night depends on him going to Paradigm every day.  Funny how these rewards can come back to bite me.  He was pleasant on the drive across town.  But the way he slammed the van door when he got out was a sign to me that it might be a rough day.  And it was.

I knew when I got the phone call from Paradigm that afternoon, and Barb said a quick hello before putting her phone on speaker.  That’s usually what she does when she wants Aaron to also talk, and wants him to hear me.  Aaron was yelling, very upset and belligerent.  It had been a no good, very bad day…..and was soon to get even worse.  At this point, Aaron didn’t want to ride home with his driver.  Last August, we hired an agency to bring Aaron home from Paradigm in the afternoons.  Aaron likes going from point A to point B, with no stops in between.  But the route includes other clients that go home before him, so this had become a trigger for Aaron.  On his no good, very bad day….Monday….he did NOT want to ride anywhere but home. 

Once Aaron is upset…really upset….he’s like a volcano that must erupt until the flow of anger is over.  His autism prevents him from calming easily.  It prevents him from listening to reason or being reasonable.  He has very few filters, so words fly when he erupts, and some are inappropriate.  He decided on Monday to go ahead and ride home with the driver, knowing that he really had no other choice.  But he promptly told her to shut up when he got in the car, and he refused to put on his seat belt.  The whole way.  Not good….not good at all.

Shortly after he got home, upset still but calming some, my phone rang.  It was the agency that provides his rides home, telling me that they were very sorry but that Aaron would no longer be allowed to ride with them.  I understood, but I tried to do some explaining and then I asked for a second chance….but two days later was told there was no second chance.  Good luck with finding a new driver….it’s been nice working with you…. 

Back to Monday.  After the phone call, Aaron looked stricken.  He decided to try to rectify things by offering to help cut the ends off the asparagus I was fixing for supper.  I let him.  And during supper, out of the blue, he asked if he could write a get well note to our friend, Atha.  She’s been very sick and is in a rehab center.  I got him a note card and he wrote her his succinct get well wishes.  They were words of gold to me that night.  I think they will be for Atha as well.

Later, though, as Gary and I tried to absorb the events of Aaron’s day – especially the loss of his ride home, which is huge – things went downhill fast.  Aaron ended up realizing that we were trying to bring up the recurring subject of him moving out one day….living in a residential setting. 

“You could live with some friends, Aaron!” we said.

“I DON’T WANT TO LIVE WITH FRIENDS!!” he yelled.

And he stormed up the stairs as he told us how much he hated us.

But within seconds he was stomping back down the stairs, sitting in the recliner and rocking furiously.

“You just want me to leave!” he said, with tears coming down his face.

We tried to explain….tried once again to reason with him.  It doesn’t work.

“Aaron, Rosa lives with her friends and comes home on weekends.  And Shauna, and Natalie….”we told him.

“I DON’T CARE ABOUT ROSA OR SHAUNA OR NATALIE!!” he again yelled…..and again stormed up the stairs.

This went on for a long time, until finally he….and we….were spent and there was nothing else to say.

Tuesday was a better day at his day group, for the most part.  I drove to Paradigm in the afternoon to pick him up, fighting my frustration.  It didn’t help me at all to see and hear Aaron being rude to another client.  I was distant and silent as we started the drive home, finally responding some to Aaron but being rather cold.  That wasn’t a good choice for me to make.

“Mom!” Aaron said.  “You’re ‘iknorin’ me!”

The volcano erupted once again when we got home.  Aaron kept saying over and over that I had ‘iknored’ him.  He was crying hard, and my heart was breaking.  I tried to explain, but to no avail.  He pulled a large picture off his wall, taking some paint and dry wall with it.  He ripped a dollar bill into pieces.  He very loudly slammed his door several times.  And he told me that he was going to put a sticky note on his door that said, “Mom is an idiot!!” 

I sat on his bed.  He had his headphones on as he looked at a video.  I told him again that I was sorry, and I asked him to forgive me.  All he could do was cry and say, “You were ‘iknorin’ me!!”

So I said the words that always reach his heart.

“Aaron?  Would you like to go get a Slushie from Sonic?”

Without even a pause he quickly said yes, and so we got in the van and got his slushie.  I parked in the Dillon’s parking lot, away from others, and he slurped while I talked.  He calmed and I tried to explain things, knowing full well that Aaron doesn’t relate to most of our explaining sessions.  Finally I was done.  There was quietness before Aaron spoke again.

“Mom?  There’s a reason why you shouldn’t watch Alien Vs. Predator 2.”

He didn’t notice my deep sigh or the shaking of my head.

Oh, if only Aaron could convey to us his hurt and his anger with reasoning words instead of hard and hurtful words!  Or curse words.  Or just totally ignoring the situation and talking about aliens. 

Aaron often doesn’t even know why he’s frustrated.  He just is on some days.  As he escalates, so do others around him, and that only further compounds the issues.  I reacted with ‘iknorin’ him on some of the drive home, which I really shouldn’t have done, so he reacted.  Did he ever!  But he was afraid that I didn’t love him anymore.  He’s terrified of losing my love, but he can’t verbalize that.  So he reacts with anything that comes to his mind that demonstrates his deep fear and hurt.  That usually means that he breaks something, like his watch or his glasses or his picture on the wall or the dollar bill.

Why am I telling you all of this ugliness?

I’m sitting here listening to Aaron’s monitor….listening for another seizure which may come.  He had a long seizure at 5:30 this morning, and only one seizure means that usually more will follow during the day.  He’s napping in his room and I’m on alert as I go about my day. 

I tell you the ugliness of his behaviors because really, those behaviors hold him down more in life than do his seizures.  It’s a raw, hard reality for many parents of special needs children.  Those sudden, awful, interrupting, exhausting behaviors.

I can explain seizures.  Other parents can explain various visible special needs of their children, or even special needs not seen but understood.    But behaviors?  So frustrating….so embarrassing…..so condemning for both child and parent.

But we need those behaviors to be understood as well.  And we as parents need to always work to understand them, too, especially in the heat of the moment. 

I have friends who would say to others, “Please, please understand my loud and uncooperative and bizarre and hateful child.  Please just try to understand, and not judge and not condemn and try to give advice or lectures.  Just understand, a little even.  Sometimes that’s all we can manage, too.  A little.”

And love a lot.

Tuesday night, as Gary was going to bed, he said, “Hey Aaron.  Come here.” 

I thought that Gary had something cool to show Aaron, so I looked around the corner of the kitchen to see what it was.

And as Aaron walked toward his dad, Gary held his arm out and gave Aaron a hug.  Aaron even responded!

I blinked back the tears.  Sometimes it’s hard to love Aaron, honestly, but we must….and we do.  I was very thankful for that sweet picture that ended our second no good, very bad day with Aaron.

One more thing.  I went inside Paradigm yesterday when I went to pick up Aaron.  What a lifter-upper that was!!  Those wonderful clients, with so many needs, have so much love to give….even on or after the bad days.  Love for me and more importantly, love for Aaron.  We could hardly leave for all the hugs and talking and smiling. 

Every day is a new day, as Barb says.  A fresh new start.

“This is the day which the Lord has made.  I will rejoice and be glad in it!” 

But sometimes I AM glad when they’re over.  J 

Playing Skip-Bo at the end of one of those rough days

The WORST Two Weeks!

Listening to all the stories of the huge winter storm back east brings back some memories of a couple interesting winter storms that our family experienced several years ago.  We endured two vicious storms, back to back, but in different states and in different ways…..neither of which any of us care to experience again.

It was December of 2004.  We had made a change of plans for our Christmas.  Dad had just been diagnosed with liver cancer the month before, so we decided to make a trip home to Princeton, West Virginia for the holiday.  We should have known it was going to be a strange trip because of what happened the evening before we left.

It was late in the afternoon and Gary was in our driveway, getting the topper put on our van.  Suddenly a dilapidated old car zoomed into our driveway and screeched to a halt.  Immediately there were probably 6 police and sheriff cars that surrounded our driveway and the front of our house.  The officers jumped out and were all over that old car in nothing flat.  Gary eased back into the garage and came in the house.  We all watched from the windows as two or three people were taken from the car, frisked, handcuffed…..the whole nine yards, just like on television.  Except this was in OUR driveway! 

In the meantime, our neighbors all around were wondering what on earth was going on over at the Moore’s house.  Several tried to walk up and question the officers, but were bluntly told to leave and go home!  This made them even more curious and worried, of course.  We were in the house still wondering what was going on outside.  We were also fielding phone calls from neighbors as well as struggling to keep Aaron in the house.  He wanted nothing more than to barge outside and find out exactly what all the excitement was about.  We wanted nothing more than for him to settle down and to NOT go outside, where who knows what might have happened.

Finally, a police officer came to our door to tell us a little about what was going on.  Apparently, for several days the police had been casing this guy’s mobile home about a mile up the road from us.  He was a suspect in some sort of drug business.  On that day, when he left his home, he soon realized that he was being followed.  He turned into our neighborhood in an effort to lose the police.  But our circle has no outlet, and when he realized that he was trapped, he pulled into our driveway and gave up.  We had to wait for the culprits to be taken away and for the car to be impounded before we could once again work on getting the van packed and ready.  It made for a long evening.  And Aaron was very disappointed that he never got to go outside and personally be a part of all that huge excitement!

We climbed in the van very early that next morning in the bitter cold.  Facing a 16 hour trip – at least – was not much fun for any of us.  Our teenaged kids especially didn’t enjoy the very long drive.  Little did any of us know what was ahead.

First of all, the van wouldn’t start.  Could anything else go wrong, we thought?  Like I said, little did we know.  Gary and Andrew jumped the battery, and off we headed, praying that the van held up on our long trip.

Things went well for quite a few hours, but as we got closer to Kentucky we started noticing that cars headed in the other direction had snow on them.  The more time that went by, and the more vehicles that went by in the other lanes of the interstate, confirmed to us that we were headed into snow.  And soon it was not only snowing, but there was ice and there were strong winds.  We were in the thick of it in Kentucky when we eventually came to a complete stop on I-24.  As far as we could see in front of us, and as far as we could see behind us, there was nothing but huge trucks and many cars.  No one was moving, not even an inch. 

Eventually, people started getting out to walk around….to talk to other drivers and families….to see if anyone knew what was going on.  But as the weather worsened, most people just stayed inside their vehicles and hunkered down.  We waited, and waited, and waited…..for 10 hours!  Gary would turn the van on for short periods in order to warm us up some.  Thankfully, we had food and water and blankets.  The guys were able to go outside to use the bathroom, but Andrea and I kindly declined their offer to hold up blankets to hide us….in the snow…and the ice…on the sloping bank outside the van.  We joked about all that, and during that long night when all we heard was the pinging of snow and ice on the van, we would hear Aaron’s deep chuckle in the back seat, from under a blanket.  He thought the bathroom business was pretty funny.  And of all things, he handled the whole miserable experience very well.  We were amazed at that!  And thankful!

Traffic finally started moving again, very slowly at first.  There were cars and trucks off the interstate all over the place, stuck in the snow and ice.  It was a terrible mess.  Gary got off at the first exit he could find. We were so thankful to see a gas station and convenience store.  So were many other ladies who probably waited like Andrea and I did.  We were all hurrying as fast as the snow and ice would allow us to get inside and stand in the bathroom line. 

Our normally 16 hour trip to West Virginia took us around 30 hours!  We still had a sweet time with family before soon heading back to Kansas.  We had only been home in Wichita for several days when word of another winter storm came on the news.  This storm was set to hit Wichita with some ice, but no one had any idea just how all the elements would come together to create a monster ice storm.  Ice fell from the early afternoon of January 4 to the afternoon of the next day.  You could stand on our porch and hear the sharp crack of branches falling from the trees, and the clink of limbs hitting each other in the wind. 

We lost our power that first evening.  Of course, it didn’t take long for us to be very cold.  Andrew sat up in bed that next morning and realizing that we still didn’t have power, and that ice was still falling, he declared, “This has been the WORST two weeks of my life!!” 

We laughed, but we certainly understood how he felt.  We had all about had it with awful winter weather!  Our power was off for five days.  Thankfully, we had hot water.  We cooked on our kerosene camp stove, we had lanterns, and life wasn’t all that bad.  We played games and read books, and actually enjoyed some great family time together.  Some friends had come over to hook us up to a generator on that fifth night.  Just when they were finishing, our power came back on.  I actually felt bad for all the work they had done only for us not to need the generator.  But oh, when those lights came on and the heat started up, we were very happy indoor campers indeed!

We really had lots to be thankful for in the midst of all the craziness of those two weeks.  We had a safe trip in the dangerous weather, time with family in West Virginia, safety in the ice storm, food to eat, warm clothes and lots of blankets, hot water, indoor bathrooms at home in the ice storm J,  Aaron did well, and so much more.

And oh yes, none of us got arrested!!  I won’t tell you how close we came a time or two.