I’m a southern girl. Well, from southern West Virginia – born and bred – so no matter what the Civil War folks say about my home state, I still consider myself to be from the south.
I guess that’s why sometimes I just want to look at Aaron when he’s being a particular form of disagreeable and just say, “MERCY!! AARON!!”
And then tell him that he just needs to hush!!
When I talk to Andrea or Andrew on the phone, Aaron invariably barges in the room and wants to talk. This happened on Saturday evening as Andrea and I were gabbing away. I knew Aaron would persist until I caved, so I finally put the phone on speaker and off Aaron went.
He was particularly fixated on Luigi’s Mansion 3 – his newest Nintendo Switch game. And he was even more fixated on going over Luigi and Gooigi. I think I spelled that right.
He wanted Andrea to know who Gooigi is. What Gooigi is made of. What color Gooigi is. What Gooigi looks like. What Gooigi does.
Andrea, ever patient with her brother, commented on everything Aaron said. She even asked questions…good questions…which fanned Aaron’s flames and off he blazed.
Talk, talk, talk, talk, talk.
It took me awhile to put out the flames. I usually have to end the talking by telling Aaron to say goodbye, after he has pushed me away several times from taking back the phone.
Never once does he ask about Andrea or Kyle, or Darcy or Oakley or Aries or Siggy…all dogs, by the way. 😊
For some reason on Sunday evening, Aaron kept referring to that phone call. He declared that I only wanted to talk to Andrea…that I never talk to him (REALLY??!!)…that I would hardly let him talk to her…and so forth and so on.
Everything is bad to Aaron when he gets like this, including the fact that I am a bad mom. I eventually shut down when this happens, meaning that I do not fan the flames of Aaron’s anger by things I say. Even my eyes – “Don’t squint your eyes, MOM!!”…or my voice inflections, can increase his anger.
Nothing that I say helps. Nothing that Gary says helps.
Aaron’s lack of empathy and his inability to connect the dots like we do is a most frustrating part of his autism.
The next morning, weary and bothered, I thought of how my friend – a manager at Aaron’s day group – deals with these issues on the day after they occur. Aaron often doesn’t want to go to Paradigm on that “next day” after he has blown it, but Barb always reminds him of an important truth.
“It’s a new day, Aaron,” she says. “We just start all over and don’t let yesterday bother us.”
Thinking of that…of a new day…reminded me also of the wonderful promise in Lamentations 3:22-23:
“The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness.”
God’s love and mercy to me, no matter how much I sin, is new every morning. And I know that I must also face every new morning with Aaron in the light of God’s loving-kindness to me.
If God is so loving and kind to me, how can I be any less to Aaron?
That next morning was still a little rough on Aaron’s part. And then when I picked him up in the afternoon, as I watched him approach the van, I saw him stop and turn, running back into the building.
He returned, holding a paper that blew in the wind as he ran toward me again, his face all smiles.
“MOM!!” he said as he got in the van. “I colored this for you!”
With great delight he handed me this picture:
I was so touched. So amazed.
Amazed that Aaron sat still long enough to color.
Touched that he wanted to mend our fences in such a sweet way.
And both amazed and touched that it was a cross he colored for me.
You see, it’s because of the cross that I can even begin to love Aaron as I should, especially when he is at times so unlovable.
It’s because Jesus died for me, and because He is my Savior, that I AM loved and that I CAN love.
And I love how the old King James Version says that verse I wrote earlier. “It is because of the Lord’s mercies that we are not consumed, because His compassions fail not.”
I am not consumed by hatred and sin or God’s judgment, but only because of God’s love and mercy.
Love and mercies that are new every morning.
Like I said, how can I love Aaron any less when I am so loved by God?
One more thing. The cross is also the reason that I can bear the sadness and fear of Aaron’s 3:00 a.m. seizure today, and another one later. The reason I can see him sleeping again now and know he may likely seize again.
The reason I can bear up under the disappointment of our doctor day being canceled…because doctor day means, to Aaron, eating out day. And he does LOVE eating out! It’s always a fun and happy day, but not today.
Aaron goes through these disappointments and rough days often, which means I do as well.
But like the verses above said, great is God’s faithfulness. He doesn’t leave me to handle it all alone. He is right beside me, my best friend, with His mercies and love that give me His peace that passes understanding.
Speaking of understanding, I won’t even go into all the detail of having to wash Aaron’s favorite fuzzy blanket today because he spilled coffee on it…and how it’s the only blanket that he wants to use on his lap when he’s at his desk…or on the couch.
About trying other blankets.
Rejecting those blankets.
Checking his blanket in the wash.
Observing me putting it in the dryer.
Following me around the house because without a blanket he can’t sit or lay.
Aaron has a way of repeating what we say but changing just one word or even just one letter, and so making us laugh or pause in thought. He has a uniquely Aaron way of expressing himself.
That is, after all, the reason I started this blog and the reason I named it He Said What?!
For instance, yesterday we had some rough weather move through our neck of these Kansas woods. Aaron was concerned, asking about the storms and wondering if he should turn off his computer.
I’ve often shown him the radar and pointed out some storms headed in our direction. I sometimes refer to them as a clump of storms coming our way.
So, as he followed me around the house and fretted over his computer being hit by lightning, he said, “Mom! Is that lump of storms going to hit us?!”
Two words, so similar, yet somehow the difference was enough to make me laugh.
Aaron has become a fan of the television show Chicago Fire. In December the fall finale had the typical…and very unrealistic…cliffhanger. Aaron has talked and talked and talked and talked about those canisters in that basement, surrounded by fire, and whether they would blow up or not!!!
I told him that this was a cliffhanger. Aaron, who is very literal, saw no cliff in that fall finale. He also saw no one hanging from a cliff in that basement.
I therefore…and not for the first time…explained that a cliffhanger is when the show’s producers leave you hanging on after the last show of the season in order to make you come back and watch the first show of the new season.
But here is Aaron’s take:
“MOM!! I can’t wait till January 8th!!
Then he waits for me to ask why he can’t wait till January 8th.
“Because that’s when Chicago Fire comes back on!!”
Then he waits for me to show excitement. I am a good actress.
“Remember how they left us hanging OFF??!!”
Then I laugh. He thinks my laughter is an expression of my excitement over Chicago Fire resuming.
But my laughter is really about the way he changed my original phrase.
Are we hanging ON…or hanging OFF?
His change-up of that one little word has had me pondering over the past few days.
Hanging OFF a cliff is a scary situation, to put it mildly.
Hanging ON, to me, conveys hope.
In life, when I am hanging off a cliff of fear or dread or disappointment…or any number of other scenarios…I must remind myself to hang ON.
I hang ON to God and to the hope that He gives me.
How often our life with Aaron changes! We can so quickly go from enjoying life:
To the suddenness of seizures:
The above picture was right after Aaron’s third seizure on Christmas Eve, just as we were getting ready to play Christmas Bingo as we Skyped with Kyle and Andrea from Houston.
It’s a stretch for Aaron to want to play games. My first heart reaction was to wonder why. Why must he have a seizure when he was actually willing to sit with us and play a game?
Sometimes his seizures keep him from participating in something that he really wanted to do. That makes me sad for him. Disappointed.
He did arouse enough to play Bingo, but I played his card because he was uncoordinated and shaky…and grouchy, which is typical when he plays Bingo.
Every day…every situation…can be a cliffhanger with Aaron. Will we have seizures to manage? Behaviors to handle?
I do feel like I’m sometimes hanging off a cliff, holding on for dear life, afraid of what’s next and afraid of falling…of failing.
But then I must remind myself that I’m not alone. I know and trust God.
And I hold ON to Him.
I don’t understand everything.
I don’t even like everything.
But I love God, and I know He loves me.
So whatever cliff it is, I do know that I’m not just hanging off.
I reach up and I hang ON to God.
He lifts me up and He rescues me…not from the situation, necessarily…but from the danger of despair and hopelessness that can so easily overwhelm me.
After all, look at what God says about Himself in Psalm 91:15:
“He will call upon Me, and I will answer him;
I will be with him in trouble;
I will rescue him and honor him.”
May I remember, every day and in every cliffhanger, that I don’t need to just hang off.
I can hang ON…to the God Who rescues me.
Last night Aaron heard The Four Tops song “Sugar Pie, Honey Bunch” on a commercial.
“MOM!! I know who that is!! It’s the TEN TOPS!!”
He can’t seem to decide just how many FOUR Tops there are! Which reminded me of this blog from several years ago. 😅
Individuals with Asperger’s Syndrome often become fixated on certain areas of interest. This is also called “perseverating.” When Aaron demonstrates this behavior, we call it: “Oh good grief! What’s Aaron stuck on now?!”
On our recent trip back east, he took his CD player with him along with some favorite CDs as well as some CDs he hadn’t listened to often or ever. He loves oldies music and so when he started listening to The Four Tops CD he was captivated. Over and over he played certain songs, and over and over he stared at their picture inside the front cover. I had to look at it; Gary had to look at it – and we had to listen to Aaron talk and talk about The Four Tops. At one point he said, “I love The Forty Tops!” I told him that if they were The Forty Tops then they…
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If you know me, and especially if you are a Facebook friend of mine, then you know that I love sky pictures. I have taken hundreds of sky pictures from our upstairs bedroom windows that face the western sky.
Storms moving in:
Even a Great Horned Owl that used to perch on the top of our big pine tree (sorry for the fuzzy picture):
The view changes depending on so many factors. Weather, the time of year, the time of day, trees that have been cut down due to disease, and so much more.
On a recent morning, as I finished my quiet time, I looked out the window and was drawn to the pretty sky outside. But as I prepared to snap some shots of the sky, my eyes also saw this.
Can you see it? Where we once had a farmer’s field across the road from us, we now have a future housing development being built.
Civilization is encroaching upon us. Some call it progress, but we are not exactly happy with how the building of 300 homes will change not only our view, but our traffic and so many other things as well.
But do you know what won’t change? The sky itself won’t change.
I can still relish our beautiful sky, no matter what’s happening on the ground below.
Change is a fact of life. Some changes are exciting and wonderful, while others are sad and fearful.
What’s looming in your view today? Are changes possibly coming in your life that leave you unsettled and scared?
Our focus in those times is vital to our peace. I can choose to be filled with apprehension or to be filled with peace.
Just like I can choose to look at the houses being built, or I can choose to gaze at the sky above…so I can choose to center my attention on my problems ahead or to center my thoughts on God above.
I control my eyes…my thoughts…my focus.
Psalm 123 states this fact perfectly.
To You I lift up my eyes,
O You who are enthroned in the heavens!
Behold, as the eyes of servants look to the hand of their master,
As the eyes of a maid to the hand of her mistress,
So our eyes look to the Lord our God,
Until He shall be gracious to us.
God is sovereign over our circumstances.
God is also sufficient for us, whatever is our present or our future.
One more thing. The word “gracious” carries the meaning of someone stooping down in kindness to an inferior.
Just like God stoops down in His mercy to me, time after time, to hold my hand and show me His kindness, so He will do over and over as I walk this path of life.
This is my prayer for myself, to keep my eyes on God and not on what is around me or ahead of me.
I control my eyes.
I am so thankful that it is God Who controls my life.
Patience is a virtue, so someone said, but I can tell you that it is not a virtue that Aaron typically possesses.
On an average weekday morning, when Aaron is waking up to the smell of his coffee that I bring to his room, he is also waking up to the reality that he will soon be going to his day group, Paradigm. Hope springs eternal, though, that he can stay home. It’s not that he doesn’t like Paradigm. It’s just that he likes being home more.
I fully expect each morning to be the same and am surprised if it isn’t.
Mom, I have a headache.
Mom, my stomach hurts.
Mom, I didn’t sleep much.
Mom, mom, mom…followed by various stay-at-home excuses.
I leave him to his coffee and his conniving as I go about my own getting-ready morning routine…a routine that Aaron knows all too well.
Eventually, almost always, Aaron comes around and decides on his own to go to Paradigm. The problem is that when Aaron decides to go, he wants to go now.
Like, NOW now.
If Aaron walks into the bathroom while I’m drying my hair, he knows that after drying of the hair comes fixing of the hair.
After fixing of the hair, comes applying of the make-up.
Applying of the make-up may be short…meaning only a dusting of powder and a swipe of blush…and mom is good to go.
But sometimes, after the powder dusting and blush swiping, Mom moves to the dreaded eye make-up.
Eye make-up takes way too long in Aaron’s book on a morning when he has resigned himself to his Paradigm fate. He wants eye make-up to go away…to not be applied. He knows that if Mom moves to her desk in the other bedroom, where she seems to like that light from the window, then her eye make-up is really going to happen.
And now is not NOW!!
NOW must wait.
Waiting requires patience…that virtue that Aaron rarely possesses.
One recent morning, as Aaron hovered behind me in my bathroom watching me in phase one of my getting-ready routine…drying of the hair…he decided to broach the dreaded subject of my make-up amount.
“Mom,” he began, “so when you DO put on make-up, are you going to do it ever long?!”
He sounded positively Shakespearean!! 🙂
On many mornings, however, his impatience with my make-up routine can make him very angry. It’s not that he has a thing against make-up. It’s that he has a thing against waiting.
Just like I often begin my days with Aaron’s lack of patience, I also often end my days with that same impatience brewing in Aaron’s mind. This time his testy attitude surrounds the fact that he knows we will watch a show just before bed. We are working our way now through the series “Dr. Quinn: Medicine Woman.”
Last night, being New Year’s Eve, Aaron thought a great way to celebrate would be to watch TWO episodes. He came downstairs at 7:30 to find that I was watching an end-of-year special that I had no idea I would watch and that I had not run by him for his approval.
This was not good. Not good for me or for Aaron.
He let me know that he wanted to watch Dr. Quinn now.
Like, NOW now.
I told him no.
I told him that we would watch Dr. Quinn at 8:00.
Waiting for 8:00 was ever long for Aaron. And he let me know, as he went up the stairs to his room and down the stairs to the family room…over and over and over…that 8:00 was unacceptable.
I stuck to my guns, but not without facing Aaron’s wrath.
In fact, I finally marched to my bedroom…got my purse…put on my coat…and told Gary that I was going out for a drive, in order to clear my head.
Aaron just watched, not saying a word. I do believe he was scared. While I was gone, he stayed in Gary’s study. Gary was a captive audience with his leg all bandaged and propped up from his recent foot surgery.
I talked to God while I drove. I told him that I feel a little blank anymore, wondering what He wants to show me or teach me in this life I live. I told God that I want to be patient with Aaron, and that when I’m not, I don’t want to sin in my impatience and anger.
That’s the tough part…not sinning when I am also the one not exercising that virtue of patience.
While I was out driving, I saw a section of beautiful lights still on full display in a neighborhood. I went home, got Aaron, and together we drove through the pretty lights.
No lecture. No mention of his anger.
Just enjoying the bright beauty around us.
It was calming to us both.
And it was surprising to Aaron, I could tell.
Surprising to him that I wanted to simply show him something pretty…something that he loves…when he had just been so mean to me.
Aaron needs to learn to wait. It’s hard on both of us as I continue to try to teach him that virtue.
I read this morning some of my old notes from my Genesis Bible study I recently completed. In talking about how Abraham had to wait on God to give him a son, Joyce Baldwin said this:
“God’s delays are not God’s denials.”
A delay doesn’t mean no.
To prove His promise to Abraham of a son to come, God had Abraham look up into the heavens. God told Abraham to count the stars…the bright shining stars. He told Abraham that so would be his descendants, innumerable like the stars up above.
But the promise wouldn’t happen now.
Like NOW, now.
But Abraham, while watching others have sons and grandsons, had to wait on God to fulfill His promise in a most unlikely way and time.
Abraham had to believe God…had to trust God…and it was counted to him as righteousness.
God did fulfill His promise to Abraham, in His own time. Not in Abraham’s preferred time.
And this is where and how Abraham grew in his faith. As Baldwin says, “Faith rests on the fact that God is faithful, and when we take God at His word, we prove for ourselves His faithfulness.”
Aaron needs to learn to trust me and to be patient when he must wait on something.
I need to learn to trust God and to be patient when I must wait on Him as well.
Waiting on Him to show me what I need to learn…to give me grace for life with Aaron…to not compare myself to others…and a myriad of other reasons and ways that I must wait on God.
Bright lights calmed me and Aaron.
Bright stars calmed and settled Abraham in his faith.
Because God is faithful, I can have faith. Faith in God even during the hard times.
Faith to wait, even when fast answers don’t come.
Aaron and I did watch two Dr. Quinn episodes. It took ever long, but we did.
I kept my promise…and so does God.
From two years ago:
“Do I have seizures because God doesn’t like me?” Aaron asked. This is like a question Job would ask, and I wanted to give the right answer without being too shallow or too deep.
“Mom?” Aaron asked last night as he was going through his ever-important bedtime routine. I was ready for yet another question about what the SS means on the side of the Poseidon…or what kind of vision do the aliens on Pacific Rim have…or what is the quick freeze on The Day After Tomorrow movie? So I just absently responded with my all-too-often reply.
“Hmmm?” I absently answered as he stood beside me in the bathroom, watching me put something away.
“Do I have seizures because God doesn’t like me?” he continued.
And I stopped…stopped dead in my tracks at this very unexpected question.
I looked up from what I was doing, into his very serious face.
“I just wondered if I have seizures because God doesn’t like me,” he continued.
This is like a question Job would ask, and I wanted to give the right answer without being too…
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