|Our military housing on Fort Huachuca, Arizona|
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I'm Patty, and my husband and I are living with our adult son who has autism and epilepsy. I love sharing lessons learned from life around me, especially life with Aaron.
|Our military housing on Fort Huachuca, Arizona|
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Aaron was in the hospital last week. Thankfully, this was a scheduled visit and not an emergency like we had two years ago when Aaron got suddenly sick with aspiration pneumonia. This recent stay was so that Aaron could have a Video EEG. This testing is an important tool in determining where in the brain his seizures occur, thereby hopefully having some new treatment options offered to him.
We had determined to make the thought of a hospital visit sound as exciting as possible while also being truthful about the purpose of the testing. We talked about how we would have time there to watch DVDs; play Skip-Bo; play his Nintendo DS; and ORDER FOOD!! This all sounded like fun to Aaron, although he would have much preferred to have these same options while staying at home. I told him that the business of ordering food was not going to happen at home, so off to the hospital we went.
I gave Aaron his bag to carry as soon as we parked in the parking garage at St. Francis. I grabbed the rest and we walked to the elevator. Aaron happily punched the button, and soon the doors opened…….to reveal a rather large man sitting in a wheelchair. This man was a double amputee, having no legs, and I must say that it was a bit startling to see this. Aaron just stood there in front of me, and in front of this dear man, staring and not moving. I gave Aaron a little nudge as the kind man gave a big smile, and told us to come on in.
“Please, please, please, Aaron,” I thought to myself. “Don’t say anything you shouldn’t say!!” Thankfully, Aaron kept quiet as the man and I chatted. He was so personable and nice. I’m sure he was used to many stares, and in that respect I could relate to him. Maybe he knew that. The elevator door opened and he told us to go on ahead, which we did.
We walked away a few steps, and Aaron just couldn’t hold it in any longer. “Mom,” he said. “That man didn’t have legs!!” As if I didn’t notice. I hushed Aaron, knowing that the man was behind us, and so Aaron repeated it again, but quieter next time. Hopefully the man didn’t hear us. Later I was able to use that as a teaching moment for Aaron about being kind and polite. I have no idea if it stuck, because Aaron was immediately off on something else……namely, the bell that he saw and really, really wanted to ring.
Aaron had to wear button down shirts because of the wires which would be on his head. He looked so nice, I thought, not at all like he was getting ready to stay in the hospital and have seizures.
Hospital visits for Aaron, I have learned, are very interesting and also challenging. There are many people who work with Aaron who quickly see that Aaron is unique. My job, other than caring for Aaron, is to care for those who come under Aaron’s blunt responses……or his silence…..or his attempts at being funny……or his frustrations……and I could go on and on.
The nurses, the technicians, the doctors……just everybody who saw Aaron…..were wonderful and kind and very understanding. I’m sure many didn’t totally understand everything about Aaron, but still they were sweet to him and to me.
The resident who came in every day certainly got an earful soon after we got in Aaron’s room. Aaron was being hooked up to the EEG while the resident came in to do his assessment, and to ask me questions. He had lots of questions about Aaron, of course, but Aaron finally interrupted loudly.
“My Mom’s a blabbermouth!!!” he said with a measure of anger.
I knew exactly what Aaron was saying. He didn’t like being talked ABOUT while he was sitting right there listening. However, it just has to be that way sometimes, which I explained as the resident was stifling a laugh. This resident stifled lots of laughs, and some he didn’t hide at all, during the four days that he saw Aaron.
Aaron also doesn’t like to be made to feel dumb. No one there in the hospital did that at all to Aaron, but it was easy to interpret it that way. Like when he had his first seizure on the second night, and the nurse came in later to check on him. She asked him to say, “One, two, three, four, five.” He repeated it, but with frustration, and so she quietly asked me about it. But it made Aaron feel dumb, he told me later, so I had to explain the situation to both Aaron and to the nurse.
I was a liaison, I guess. That could look good on a resume, actually.
So, Aaron was all hooked up shortly after getting to his room. He also had heart monitors on his chest, so he had both the EEG pack and the heart monitor pack to put around his neck when he got up to sit in a chair or go to the bathroom. He handled it so well, only getting irritated a few times and REALLY irritated on the morning of dismissal…….which never happens fast enough for anyone, but especially for Aaron.
He loved watching the EEG lines on the monitor until it was turned off in our room, doctor’s orders for everyone. It didn’t take him long, as our friend Terri was visiting, to see that when he rubbed his hands together the lines on the monitor became huge and black. He was really hilarious as he rubbed his hands together quickly and watched the monitor screen darken. He would laugh loudly before repeating it again. It was a good thing that the monitor was finally turned off.
When Gary came that first evening, Aaron did get to show him the lines. “Dad!! When you were in the hospital, did you have lines?!” And……
“Dad!! Get in my bed and see what it’s like! It HIGHERS!!”
A bed that goes up and down is such great fun……for at least a day.
His first dinner ordered was: Mashed potatoes, a roll with butter, and pizza. He was truly in food heaven!
He wanted to keep his schedule as much as possible. We played Skip-Bo the first night, but he got so sleepy that he finally took a nap.
He got up at 9:00 to finish our game, but was still very tired. I suggested bed. And those of you who know Aaron will guess what he said.
“It’s not 10:00 yet.”
Silly mom. Going to be before 10:00!
So I suggested that he brush his teeth.
“Not till 10:00,” he informed me.
Silly, silly mom!
I forgot to bring his deodorant. Knowing that Gary gets home at 5:30, Aaron said, “When it becomes 5:30, can you call Dad to bring my deodorant?” He was happy to see it in the bag later that evening.
“Can you put the deodorant on right now? My chest stinks!”
He loved having Joyce come, and really loved seeing the subs she brought us and the goody bag full of treasures. His favorite was the sock monkey and the battery operated back massager.
He talked to Wendy on the phone…….Wendy, whose son has terrible seizures and who totally understands all this video EEG business.
Aaron told her, “I’m kinda all wired up. The lines are detecting my brain.”
We laughed, Wendy and I. But then Aaron said, “They’re trying to discover things about seizures in my brain.”
And that was the difficult part. To discover things about seizures in the brain, you must have seizures. So, as Aaron’s seizure drugs were decreased, his chances of seizures were increased……which was the whole reason for being there. Still, it was hard on Aaron and hard on my mama heart.
He did have a seizure, finally, on our second night there and again that next afternoon. The doctor got the results needed in order to talk about future treatments. But Aaron’s seizures continue to be what we knew they were from years ago. I listened to Dr. Lee as he told me the results.
Generalized seizures…….no focal point…..hard to treat……limited options.
But God isn’t limited at all, this I know. He has a plan for Aaron and for us.
But Aaron’s plan at that moment was to ask the doctor the all important question: “CAN I GO HOME???!!!” Even getting to order food was not so charming anymore.
Aaron was happy, happy, happy to hear that he could go home the next morning. And on that next morning, he gave the resident a whack on his posterior, much to my great embarrassment……the resident’s great surprise……and Aaron’s great delight. He squeezed the nurse’s fingers way too hard during her last assessment, and told her that he was tired of her listening to his breath. He rolled his eyes at the hospitalist when she came in one last time. He tried to remove his wires on his own, and some had to be reattached, much to his great dismay.
But at last, the wires were all removed!!
The bags were all packed!!
Shoes and socks were on!!
Discharge papers were all delivered!!
The wheelchair arrived!!
And it was home again, home again……with a stop to get Dad and deliver him to pick up his truck that had died out on the road earlier in the week and was in the shop. Yes, it was that kind of week for him and for us. And then a better stop at Taco Bell, and home with nachos and tacos and all our hospital stuff!
Another piece of the puzzle of Aaron’s life and health is now in place. It’s not the best of news and it’s not the worst of news.
But no matter the news, we have lots for which to be thankful.
“Let your requests be made known unto God, with thanksgiving,” the Bible tells us.
Some days that’s hard to do, but God has a gentle way of reminding us. Like I’ve said to Aaron since we saw the man on the elevator: “Yes, you have seizures. But you can walk!”
And may I add: Aaron can talk!
To be continued, I’m sure.
As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms. While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided. A big reason I think this is because I know me. I know me better than anyone else knows me, except God. I know that I’m no more special than any other mom out there. This isn’t fake humility, either. It’s just the truth.
All moms need God’s grace for each day. We who are His children need His grace for our own children in so many different ways. How amazing is God’s grace, too! He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning. He has all…
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My phone rang this morning, and there on the line was my very dear friend, Wendy. I knew right away from the sound of her voice that something was wrong. It was Elijah, Wendy said, her tone flat and exhausted. He had run away again, on his bicycle, and had almost gotten on highway 24. Somehow Wendy got him back, although we didn’t go into all the details of that.
Elijah, who turned 20 years old yesterday, suffers from the worst form of Epilepsy there is. He has horrible seizures that often require oxygen, and sometimes require strong drugs to just stop the awful seizing. Those drugs may help to save his life, but they also cause his life to be miserable after the seizures stop. Life saving drugs like that are also life changing drugs because of the terrible behaviors that usually follow their use.
It’s an awful catch 22……a dreadful dilemma for Dan and Wendy, his loving parents. And for Elijah……and the whole family…….they live between a rock and a very, very hard place.
Seizures cause changes in the brain. These changes can contribute to behaviors that defy reason. Drugs to control the seizures often have the very unwelcome side effect of causing even more behaviors. Add to all this the sometimes necessary brain surgeries that children like Elijah have had…..multiple brain surgeries…..and the mix is indeed toxic when it comes to the brain being able to make the connections that you and I take for granted.
Gary and I face these same dilemmas with Aaron, trying to find the balance between seizure control and quality of life……both Aaron’s and ours. Yet preventing or lessening seizures is of paramount importance. It’s literally a life or death situation.
But so are behaviors, sometimes, when those behaviors can be as dangerous as Elijah’s.
And let’s not forget autism.
Sometimes it’s just too much!
No disease or syndrome of ANY kind is easy to bear. But some are, sadly, easier to explain.
I do believe that explaining……let’s just say it……bad behaviors…..is tremendously embarrassing and frustrating to us parents who find ourselves having to do it over and over and over.
We get “the look.”
We get the questions, spoken or not.
We get “the talk” from teachers or our friend’s parents.
And sometimes we DON’T get…..the party invitations…..the friendships……the understanding…….the listening ear……the sympathy, that we so desperately need. That our special children desperately need.
It was just last year that someone came up to my car window, and with great exasperation, said, “Can’t you DO something about Aaron?”
I looked at her in disbelief and said, “Do you have ANY idea what all we have been doing with Aaron for over 30 years?!”
Today I gave our Aaron a fun day after his four days in the hospital. We went to see Beauty and the Beast. Aaron wasn’t totally sure that this was prime movie material, but the thought of popcorn and time with Mom won him over.
As the movie progressed, I was pretty amazed at Aaron. He was completely enraptured by this movie. He was so still and quiet, except for the rubbing of his hands together that is just so Aaron. He rubbed his hands softly, unless there was a very exciting piece of action. He ate his popcorn but didn’t even want a second tub.
As I glanced at him during the movie, I saw him smiling. His eyes were big and focused totally on what was taking place on the screen. He loved the characters and the drama and most definitely the music.
But the character he loved the most was the Beast. Aaron was registering in his mind every nuance of the Beast……his anger at the first, his softening as the movie progressed, his smiles, and his joy as he fell in love with Belle.
Aaron at one point simply said, “I love this movie!”
And when he said it again, a little later, Aaron laid his head on my shoulder. It was pretty incredible.
Aaron wasn’t the only one, though, that was completely taken by parts of this love story. I was, too, but for reasons that went far beyond Belle and The Beast.
I was looking at what can transpire when a Beast – or a person – is loved. Is truly loved and valued for who they are under their rough exterior.
Wendy’s sad and tired words played through my mind as the music played on the big screen. My own sometimes weary burden over our Aaron’s behaviors was heavy on my shoulders.
Elijah and Aaron are so much like the Beast in some ways. They can evoke a measure of disbelief in how they act and in what they say or do. They are at times unlikable, impossible to understand, and downright annoying.
But there is another side to them, and to so very many others with these same issues. A side that blooms under love and understanding, as much as possible. And when we, or others, can’t really understand we at least know deep down that many actions are beyond their control.
All of this was playing in my mind as the movie played today, with Aaron’s gently rubbing hands and big smile beside me. And it’s why tears rolled down my cheeks as the words of this song, Something There, burned into my heart.
There’s something sweet
And almost kind.
But he was mean and he was course and unrefined.
And now he’s dear,
And so I’m sure,
I wonder why I didn’t see it there before.
New and a bit alarming,
Who’d have ever thought that this could be?
True that he’s no Prince Charming,
But there’s something in him that I simply didn’t see.
Aaron and Elijah, and many like them, have so much more in them than we often see. They are wonderful and funny and smart and have so much to offer to the world……and the people…..around them.
They need what the Beast needed. They need the “something there that wasn’t there before,” as the Beast’s friends sang at the end of this song.
That “something” is love. Some days the love is harder in coming than on other days, but even when our boys aren’t being Prince Charmings, they still deserve as much love and understanding as possible.
Aaron and Elijah have lots more awareness than we realize. Aaron has always known who is real and who is not when it comes to how they react to him and interact with him.
You know what Aaron said tonight?
“Mom, Gaston fake loved Belle.”
Aaron gets it.
He knows very well that the Beast loved Belle for who she was as a person. That’s real love.
And it’s the love our special kids need……the love for who they are, deep under all the medicines and conditions and labels and diagnoses.
I’ll be the first to say that it’s easier to write the words than it is on some days to live it out in real life.
But our kids will grow under unconditional love, some days more than others.
And all of us giving them real love…..not fake love…..will grow even more.
There truly is beauty in the beast, if we just love and look.
Today on the radio I heard David Jeremiah talking about those times that we come to God with such heavy hearts that we don’t really even know what to say, and so we just ask Him to speak to us in a special way. I guess hearing him say that has caused me to think today about one of the most meaningful times that I did just that.
In May of 2000, my dad was diagnosed with lung cancer. He went through months of grueling chemotherapy and radiation, and was doing very well. After four years we were all resting easier about his condition, praising God for His healing hand on Dad.
I’ll never forget the day in early November of 2004 when our phone rang. It was my mom and dad calling me from West Virginia. Some routine blood work that had been done a few weeks earlier had shown that some…
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