Shortly after dinner, Mike came by the DeSoto's house after Joanne called to see if he could stop by to share his experiences with his sister. He had talked to both Dr. Druthers and Dr. Early about his situation with his sister growing up and both felt he could give a unique insight to what it was like to deal with an adult who acted like a child.
Entering the house, Mike gave a weary smile, nervous about sharing something so personal.
"Thanks for coming, Mike. I know it can't be easy for you," Roy stated as he led Mike into the living room where the rest of his family was gathered.
"If it'll help Johnny, than it'll be worth it," was the short reply.
"Hey Uncle Mike!" Chris said.
Jenny smiled and cut to the chase, "Mom and dad said you're gonna try and help us out by explaining some things."
"That's right," Mike smiled at the girl as he sat in the chair positioned diagonally from where the DeSoto family sat. "See, my sister Julie has something called autism and even though she is 39 years old, a lot of the time, she acts much younger than her age."
Confused looks came across Chris' and Jenny's faces.
"What's autism?" Chris asked slowly.
Mike looked to Roy, uncertain himself how to explain it himself.
"Well, from what I know autism is a neurological condition, or something that affects the brain. I believe that those with this problem are born with it, although I'm not really sure," Roy admitted. "Not too much is known right now about what causes autism, but doctors do know that autism affects a lot of things in a person. Autism causes emotional problems, learning problems, and connecting with others. That's all that I really know about autism truthfully as it was just recently put in our paramedic manuals."
Nodding, Mike took it from there, "That sounds about right from what I have seen growing up with Julie. Anyway, doctors Early and Druthers thought it would be a good idea for me to share how it is when she acts younger for whatever reason. See, for whatever reason, there are times where things just seem to overwhelm her and she no longer is the adult she actually is. Instead, she becomes a child in almost every sense of the word. Julie will somehow forget about the dangers she should know about, such as watching out for traffic, not tasting chemicals, wandering away from a trusted adult in a store, dressing appropriately for the weather, the list goes on. It can be like having a young child or toddler around the house.
"Our house was set up very unique because of this. We had to keep anything that was potentially dangerous locked up, because she didn't know better. It's possible Johnny may not be aware of the dangers of cleaning solutions either," Mike cautioned. "With the fact that his sleep schedule will be off, John may get up in the middle of the night and not realizing the danger, go outside since it seems being outdoors was such a big part of his life."
Sighing, Roy ran his hands over his face, "So, how do we keep him safe from himself?"
"What we have done is install locks on the inside of the doors that you need a key to open with," Mike explained. "It's a pain to deal with, but it's better than finding out in the morning that the person is gone and you can't find them."
"But what about the windows or patio doors?" Joanne asked. "We can't exactly install those type of locks on them."
"Thankfully, there are locks you can install on the base of a window or the side of a window where you would need a key to open them. We only had a patio door in the kitchen and since Julie typically got up to eat in the middle of the night, my parents had to install a door with a lock to the kitchen to keep her out," Mike sighed, remembering all the hassles he and his brothers had to go through just to move around the house. "It was actually kept locked all the time since she would turn on the oven or burners, but I honestly don't believe that with Johnny, that'll be a problem. You will need to teach him more than likely, but once he realizes what can happen and that he should only use it when someone else is around, I think it should be fine."
"But, won't he want to turn them on like Julie?" Jenny asked, curious.
"No honey. See, Julie doesn't always understand that her actions are dangerous. John's doctors will make sure that he will be able to understand and follow your parents directions before letting him come home with you," Mike smiled as he answered the question.
"Ahh," was all Jenny said.
"I know we're supposed to help watch out for him," Chris began. "But do you think he will?"
"Well…" Mike took a deep breath. "For Julie, it was hard at times relying on me or my two older brothers since she knew she was the oldest. She wanted to be able to do what we were able to do and when she wasn't allowed or couldn't, it would frustrate her. Julie did usually follow our directions when we babysat her when our parents went out, mostly because she didn't want to get in trouble I think. Now, she is a lot more…accepting of things.
"It may take Johnny a while to get used to be around your family Chris and dealing with everything, especially if he knows his physical, or actual, age is different what he thinks it is. But you just need to be patient with him. I know it'll be really hard at times though. I would get very frustrated at Julie for different things, like when our family couldn't do an activity my brothers or I wanted to do because it would cause her to have a temper tantrum. And let me tell you, someone who is an adult, but who is throwing a child-like tantrum is a sight to see. She will scream, cry, throw things, and sometimes things will get broken. Then, there are the times when she ignored me and I was just trying to help her so she wouldn't get hurt. It was hard too sometimes when my parents had to spend so much time with her or moving through the house since we had to keep so much locked up.
"Thankfully, you two kids have an advantage though," Mike pointed out when he saw the scared looks on Chris' and Jenny's faces. "See, there are a lot more places for you and your family to get help, so your family will still be able to spend quality time together, even with any limitations Johnny has. Things may have to be done differently, but the resources they have today are a lot simpler than they were when I was younger. You two kids also have a lot of people who are going to be here for you and your parents, ready, willing and able to step in whenever asked to do whatever is needed. Even if it is watching Johnny for a bit so you two and your parents can just have a day together or someone to talk to. Just remember that, alright Chris and Jenny? You two are not alone."
Nodding, Chris and Jenny gave their Uncle Mike a smile.
Man, I never thought of any of this stuff, Chris wondered at the task his family was about to take on. I wonder how Uncle Mike handled it as a kid. I wonder if I can handle it. Least I won't be alone. And I definitely don't want Uncle Johnny…I mean, Johnny…to be some place where we're not.
Meanwhile, Jenny was debating as well about the changes that would take place and if she could handle them.
I think I can, she thought. It'll be a pain, but… I just still couldn't imagine not being here for him, or rather having him here so we can take care of him.
Knowing their two children were really thinking about how different and difficult life could get with Johnny, Joanne asked, "What do you guys think about all of this after hearing about all Uncle Mike has had to go through? I mean, Johnny may act like his sister in some areas. He might have temper tantrums just like any other young kid, he may find it difficult to adjust to how things are causing his mood to go from happy to sad quickly. Then, Johnny will also be facing physical therapy more than likely to help his mind and body connect right which will be frustrating for him. On top of all of that, he will have to learn how to deal with a lot of things, from it being twenty years later than he believes, to a different environment than he was raised in."
"On top of that, Johnny will be dealing with the loss of his parents as if it was recent because in his mind, it was," Roy added. "There sounds like there needs to be changes to our house, and not just in the bedroom Johnny usually is in. It would mean making sure you keep a key on you so you can open the doors and windows at night when Johnny isn't supervised until we know if he'll wander off. You'll also have to make sure Johnny isn't able to get the key. If it happens, it happens and we will deal with it than. If he asks why we have the locks as we do, we can just tell him that it's something the doctors recommend until the swelling in his brain goes down.
"We'll also have to make sure anything that is harmful is kept in the laundry room and locked up. We'll also need you two to keep things neat. It's a lot of responsibility and both your mom and I will understand if it's too much. We both promise we'll find a good place for him to recover in if it is too much. One that will allow our family to visit as much as possible and that treats him like family."
"I know it'll be hard dad, but if the doctors are willing, I wanna have him here," Chris said. "It's scary and stuff and well, I don't know how good I'll be at everything you ask, but it wouldn't be fair for him to be punished if I forget to clean up after myself."
"No, no," Roy quickly assured him. "I just want you two to try. It sounds as though it might be difficult at first for Johnny to get around so it'll be easier if things are clean."
"Whew," Jenny said as she looked at her brother and smiled back at him. "I'm with Chris. I don't know how good I'll be at not calling him Uncle Johnny though, that's what scares me the most I think."
"We'll figure out a way to deal with that," Joanne assured her daughter. "We can always say, I don't know…"
"Why not say that he reminds you of an Uncle Johnny you had?" Mike said quietly, unsure if his opinion would be welcomed.
"That's actually not too bad of an idea," Roy said. "I know Dr. Druthers wants us to keep things as close to the truth as possible about what happened and such, so I think that'll work. What do you guys think?"
"That'll be easy to remember," Jenny said, relieved.
"Yeah, dad," Chris agreed. "I can do that."
"Alright than," Joanne announced. "Now that we have that solved, I think it's time for the two youngest to say good night to Uncle Mike. If I remember right, they have a review day before finals."
Two "Awww, mom's" were heard before Roy reinforced Jo's direction.
"Come on, just think, summer is almost here," Roy reminded them.
Nodding, Chris waved to Mike before heading upstairs while Jenny hugged Mike.
"Thanks for helping," she whispered in his ear.
"You're more than welcome," he told her with a smile as she headed to bed.
As the kids disappeared, Roy smiled at Mike, "Thank you so much for everything. Truth be told, we never would have thought of most of this stuff."
"No problem," Mike said. "If you'd like, me and the guys can install the locks and stuff while you're at the hospital tomorrow."
"Ahh..." Roy began, embarrassed by how much his friends were doing for him.
Knowing how busy they would be and that Roy's crew needed to feel as though they were helping, Jo stepped in, "Actually, that'd be great Mike. I have no idea when we'd be able to get to it."
Mike gave a short nod, "I'll also make a list of some things you should do, like where chemicals or cleaning solutions might be found. I know you haven't had to worry about that kind of stuff for quite a while, but when my parents and Julie stop over, I go over a checklist to make sure things are safe for her."
"Thank you," Jo gave Mike a hug as her eyes began to water.
"Like I said, it's not a problem, I'm just glad to help," he said as he stood up. "I believe Irene has keys so that should be it. I'll let you guys get some sleep since I heard doc Early is letting Johnny wake up tomorrow. Let us know how it goes."
"We will," Roy assured him as he walked Mike to the door. "And let me know how much everything costs, we'll pay ya back."
Waving him off, Mike told him not to worry about it as he walked out the door and to his car. Closing the front door, Roy shook his head, amazed at his friends and their willingness to help out with whatever they needed.
"We are really blessed, aren't we honey?" Joanne whispered as she hugged Roy from behind.
"That we are," he said as he turned around to give her a kiss.
A moment later, the two broke apart.
"Shall we go make sure the two rascals are in bed?" Roy asked.
"Lead on," Joanne told him.
AN:
The details about "Julie" are mostly fact based. One of the issues I have is autism. As a child, I felt no sense of danger and would wander into the road. I am sure if my parents knew about those types of locks, they would have used them (I am not certain they had them in the late 1970's, but I am using my creative liberties to say they did so). I lived on my basic senses-if I was tired, I slept; if I was hungry, I ate-it didn't matter what time of day or night it was. I often frustrated my parents. My temper tantrums (known as meltdowns) were as bad as Julie's were described, if not worse-now I have much more control. I am an adult, but I often find myself struggling to balance between the fact that despite being an adult, I still am often 'childlike'. I have little to no sense/concept of money, time, dates, etc. I have a difficult time managing myself. Despite that, with a lot of help (such as a house cleaner, my mom driving me to appointments and managing meds/appointments, etc.), I live on my own for the most part.
The fact "Julie" doesn't sense danger even into adulthood is very possible with autism. Some people with autism get better, others stay the same. Autism depends on a lot of factors.
Not much was known about autism in the 1970's. In fact, mothers were often blamed for the condition. Many doctors felt it was best to put the child away in an institute and forget about them. Little hope was given for those with autism. Even when I was diagnosed in 1996, many doctors told my parents that I would never develop mentally beyond a 4th grade level. Behavior problems that stem from autism was blamed on the parents or child (as I know all too well after years of being told I could control the autism behaviors, I just didn't want to).
Just a bit about autism, why it's important to me, and how accurate this is to real life.