Tag: kids

The Startled Salesman

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A few days ago a salesman came to my door. When I answered it, his eyes widened and he visibly stepped back. I don’t love salesman and I would prefer that he was not at my door, but I also don’t love people stepping back upon first glance of me in terror. After a second of confusion, I realized of course, I was holding a giant pair of pliers in one hand. Answering the door with giant pliers is just what we do at my house and anyone who knows us, knows this. It seemed odd in this moment that the salesman was not in on what I thought was a general understanding.

E is a bit of a runner. Because of this, our house is guarded and locked to the nines. I forget this is not normal until a new person comes over and I unlock every door, appliance and cabinet in the house with a key or code. For our front door, we took the set screw out so the door handle can just pop off. Then we put the door handle in the lock box where we also keep our keys. This lockbox was established after the time E stole my keys and started my car and tried to drive away. Well, in our complacency, we left the lock box unlocked and the handle disappeared. We checked everywhere and we bribed E with anything and everything, but he would not show us where he put it. So now, we were locked in our house. We tried a myriad of options, and the large wrench pliers proved to be the easiest way to open the door. We had plans to replace the doorknob but it proved harder than first thought, to find one that matched up to our door. As of writing this entry, Eric did finally install a new door handle that we can take off and once again put in the lock box. It was after the salesman’s fresh terror that we decided maybe it was time to figure it out and get a handle. For a year though, opening the door with a wrench was our normal. I am still getting used to the handle. It almost seems too easy. Like not having to use brute force to open your door seems so luxurious. I suppose, I’ll eventually adapt and then one day it will be me stepping back in terror when someone opens their door holding a large pair of pliers.

My Rant

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Having a child with a disability is difficult. They do things differently. They are in a world that is not built for them. It’s heartbreaking having to constantly adjust E’s behavior. I feel like I am telling him that what he is, is not okay. It’s a constant struggle. When people react unkindly it’s also hard watching A witness this. She’s so protective of her brother. Especially seeing it coming from an adult. It’s scary for her.

Living this on the daily, I try to be above it and move on. Sometimes though, it just makes me mad.

I’m going to share a story of something that happened recently. I write this, yes, to vent, but mostly to educate. I choose to believe that the interactions that we have with people are due to ignorance versus just being a bad person.

Travel brings out the very worst and the very best in people. I have had people who I want to saint after my trip because they were so amazing. Then, there are the others. The ones that make things miserable for you.

We very recently travelled to Spain. E has flown a lot, and many of those flights are 5-6 hours. I was not too worried about him being on the plane for this trip. He gets grumpy but, for the most part, he is manageable.

Our second flight was 6.5 hours long. Pretty quickly after boarding, a baby started to cry. Then another. Then another. I usually put Ethan’s headphones on and he is able to tune it out and be okay. This time, he was feeling a little more stressed, and he was not able to tune it out. He is very sensitive to sound and has a very hard time with that frequency.

We have certain things that we do to help calm him down, but it’s not perfect. He will still scream out. For the first two hours of the flight, there was a baby crying almost the whole time. It was very stressful to E, but I was proud of him. He was able be redirected and calm himself. Every once in awhile though, he would still break and cry and I would talk with him and get him calmed.

Because speech does not come as easily to him, in times of stress or strong emotions, sounds come first. Grunting, crying, etc. Sounds more typical of a baby or small toddler.

Every time he would cry out, a few people around us would turn and stare. I tried to ignore it and just keep on helping him. After awhile, he was able to fall asleep for a few hours.

When he woke up he was very happy. He was giggling and making noises. Clapping his hands and just in general really happy. I was surprised that those same people were turning around and staring once more. I chose to once again ignore them, and did not try to muffle Ethan’s behavior. There were a few times he got too loud and I told him he needed to keep his voice down. I tell him it’s okay to be happy, but we have to be a little quieter with people.

Side note: I am a firm believer of not taking E places where he cannot reasonably exercise the behavior needed and follow the rules. Like a movie. He cannot sit still and he would get up and run around and that would disrupt the people. Not every activity is one that E can do. So with that said, E was making noises, but he was no louder than anybody else on the plane. People were talking about the same volume, animated in conversation, the babies were crying louder. Back to my story.

When the plane started its descent, the different babies on the plane started up again. Landing is hard on their ears and it’s pretty typical. All of the babies crying at once set Ethan off and he started to cry too and cover his ears. Once in awhile he would shout out louder, and I would tell him to calm down. It was not continuous crying non stop, but he was clearly having a hard time. About 10 minutes into the descent, before the flight attendants had to sit down, one of them came over to me.

‘You need to keep him quiet’, she told me. ‘He is disrupting everyone on this flight.’ ‘He’s autistic,’ I said, ‘he doesn’t understand.’

She rolled her eyes and moved on. A cross between embarrassed and annoyed.

I would understand her being frustrated if E was out of control the entire time. If I were ignoring him while he was screaming. If he was excessively louder than the others. None of these were the case.

Autism is often called a silent disability because it’s not as obvious from the outside. If the same behavior were coming from a child with Downs Syndrome, there would be more tolerance because his difference would be more obvious.

On the flight when E was sleeping, I was watching the movie, ‘ I am Sam’. A popular movie. A heartwarming movie. I saw so much of E in Sam. So many of the behaviors that Sam exhibited when he was excited, E had on the plane. People love to see these movies, but when they see somebody like Sam or E out in the real world, there is no tolerance. There are just so many assumptions. Even when people know he is autistic. ‘I still must be spoiling him, or not properly disciplining him. I am not dealing with his behavior correctly.’ Because he can literally understand the words coming out of my mouth, he must just be pulling one over on me and not listening. All of those assumptions are untrue. E’s whine might come off as the sound of a child who is angry or spoiled and wants their own way, but it’s not. He cannot express himself properly and that is his first go to. He lives in a world where he is constantly overstimulated. His brain works differently than the typical functioning person.

I don’t expect everyone to understand autism. I don’t even expect everyone to be comfortable with it. But I do expect tolerance. I do expect that you stick to your own business and don’t criticize what you can’t understand. It is hard enough without all of this input.

I don’t understand how people think that they can discipline the autism out of my son. Like them telling him to listen, will magically make all of his struggles go away. Like I have never told him to listen.

When you see someone acting strangely, spoiled, or whatever, do not assume that you know the whole story. Even if you do know some of the story, unless you are living it, you can’t understand it. This is true of so many things, not just autism.

Autism is not what you see on tv only. It’s not just quirky with savant like skills. It is a very real disability that affects so many other things. For E this includes, basic motor skills, drooling and spitting, aversions to clothing, inability to regulate emotions or basic executive functions. Anxiety, ocd, adhd. He also has seizures, very common with autism. Partials. When he comes out of them, often times he’s scared. He just was stuck in this seizure unable to move so he’ll cry out. He’s not just being bratty.

I love my son fiercely and will protect him at all costs. Spread awareness. If you’re with someone who is making judgements, speak up. If you find yourself making assumptions, remember there’s always more to the story. The child might seem bratty but maybe just maybe, there’s more you don’t understand.

The Tale of Asparagus

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When I was younger I hated asparagus. I hated it so much, I couldn’t even use its full name. I called it, Hairy Beans. The problem was, my family really liked it. My parents would make it often enough and inevitably offer it to me. ‘Here try some,’ they’d say. ‘Maybe you’ll like them better this time.’ No. I never did. I didn’t like this annoyance, this intrusion into my dinner of a strange looking/tasting vegetable, but I learned to handle it.

One day, things got a little more real. We had a garden. A large one. There was a plot of land next to our house that my parents turned into a garden. Half of it was grass and fruit trees, and the other half was the garden. I hated helping in the garden because it was boring. Mainly I had to weed, and in a dry place like Utah, that is not always so easy. Next to the garden, my dad had a compost pile. It was his pride and joy. Pre-internet, it was a little harder to accumulate knowledge on things like getting the perfect compost pile. He tried though. He checked out books from the library. He talked to others he knew that had mastered the art of compost. But his problem was he couldn’t get the inside of the pile warm. I don’t know why it is supposed to be warm, but I learned that it’s very important. My dads worries came to an obsessive head one night when he dreamt that his compost pile was on fire. He woke up recharged, full of life, and determined.

One day, my dad came home with a strange root. He set it on the table in the garage. ‘What is that?’ I asked. I thought maybe he had pulled it from the garden. Possibly a sacrifice for the beloved compost pile? The answer came garbled in slow motion at me. ‘It’s asparagus. We’re planting it in the garden’

Things had gone too far. I could tolerate Hairy Beans once in awhile in the kitchen, but growing in the garden? Nope. He walked into the house, and I looked around for a place to hide it. We had an old trash compactor that my Dad had taken out of our 70’s era kitchen when he remodeled it. I opened it up and put it in. Problem solved.

Two years later, My parents were going through things in the garage. At this time, my dad finally opened up the trash compactor where my foe had been well hid. He pulled out the asparagus root astonished. ‘How did this get in here?’ He turned to my mom, ‘Did you know this was in here?’ ‘Of course I did’, she answered.

My dad was rightfully confused. After talking, it turns out, my mom thought it was some kind of gardening technique he was using to keep the asparagus fresh. He was always trying new things to keep our garden going. I was found out to be the mastermind behind it all.

They planted it. It didn’t grow very well, given Utah’s arid climate. The next year something new was planted in its place but the legend of the Hairy Beans lives on.

The Post in which E disrespects a Founding Father

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I love history. I try to learns as much as I can about the past by reading different varieties of history books. I am an avid reader and the last 6 years or so, I have been into mostly non-fiction. I feel that reading about our past, helps us understand our today. Whenever I’m reading a political biography, a former president or political figure, I am struck by how similar things are to now. As I am reading certain situations, I think, yep that is happening today. I literally could insert names and it would be a news article from today. I’ve learned that human nature doesn’t change. We go in circles. We think we are super progressive, but we are just living the same thing over and over again with different players and different means. Alexander Hamilton might not have had twitter, but you know what he spent all his time doing? Writing letters. Sometimes anonymous, sometimes signed, sometimes set up to look like it was from someone else. They would be posted in newspapers. That’s how the political storms played back and forth. Jefferson vs Hamilton writing anonymous editorials back and forth. Hamilton’s children said sometimes they wouldn’t see him for days. He was locked up in his office writing letter after letter after letter. Not just to newspapers but to friends and such. We have always needed something to do with our hands. Knitting, cards, crossword puzzles. Now it’s the phone. The phone is incredibly addicting, but my point remains the same about human nature.

I don’t limit myself to political history. I also read books about certain disasters or time periods. I am fascinated in general by history.

I try to pass this love onto my kids. My A girl might not remember the date of my birthday, but she knows probably about 80% of the presidents and all 50 states. Knowledge is power, so they say.

The nice thing about living in PA is that there are so many historical places to visit. In the last year in a half we’ve been to Gettysburg, Mt Vernon, Philadelphia, DC and more.

When we are touring through different places I try to educate A as we go and tell her facts about the different places. I am always happy to see what she has learned and it’s fun to see her take an interest in history as well. It being one of her favorite subjects at school now. Second to Art.

When we were in Philadelphia about a year ago, we were trying to visit the US mint. We all really wanted to see it. We had already visited the firefighter museum, and liberty bell, and independence hall. When we got to the mint, unfortunately it was temporarily closed until further notice.

We started to walk back to the main historical square. Walking back we took a different road than we came. We saw a pretty church and connected to it was a cemetery. A and I read on the plaque that this is where Benjamin Franklin was buried. There was a group crowded around his grave on the other side of the iron gate and a tour guide was talking to them about Ben Franklin. If you have ever been to his grave, you know the tradition of people throwing pennies on it. I don’t really know why. I did hear that it cracked the old grave from all the pennies, and they had to replace it. But I didn’t hear why they did it, because as he was explaining it, I noticed some of the tourists eyes in the group looking down in my direction, sort of by my feet. I looked down to see what they were looking at, and I saw my son, E, stealing as many pennies off the grave as he could get. His little arm sticking through, stealing them, putting them on the ground by his feet and repeat. I was horrified. I pride myself on making sure that my kids behave in important situations and if they don’t, removing them. With the fence, I didn’t think that we had anything to worry about about so I wan’t as attentive.

I grabbed his hand away apologizing quietly to the group so I did not interrupt the tour. I tried to put as many pennies back on the grave without making too many noises or cracking it again, because that was the last thing I needed right then.

Eric and I exchanged a look of mutual embarrassment. Like in, didn’t see that one coming, E stealing from Ben Franklins grave that is. I asked Eric if we could go in the cemetery to get a closer look, but sadly, he told me that you had to pay to get in. Not one to be deterred by honesty and already taken to thievery, E let go of Erics hand and took off running into the cemetery at lightening pace. I ran after him as fast as I could. He started running toward the group gathered around B. Franklins grave and I started to run faster. I grabbed him right before he got to the pennies again, thankfully. But as I was running, I heard the tour guide say, now lets have a moment of silence for Mr. Franklin in honor of all that he has done for the great city of Philadelphia. When I grabbed E’s arm to get him out of the cemetery, he started shrieking at the top of his lungs. E clearly did not respect B Franklin or his contributions to the city. Eric had to help me with him because he was very angry, so the two of us had to haul him out while the tour group did their best to ignore this disrespectful, unpatriotic family of four.

I am sure our disrespect and thievery was the topic of many dinner tables that night. Luckily they did not know that we are from Harrisburg. A and I decided that as citizens of the capital city of PA, it is our duty to be good examples to all the other cities in PA. We definitely were not doing our job that day.

Next time we go to Philadelphia as a family, we will be better.

Queen A

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A is the boss of the house. Or so she thinks. Sometimes A is feeling very impressed with something she has done and might remark, “Wasn’t that a very six-years-old way that I got the cheese out of the fridge?” If I agree and say, yes it was in fact a very six-years-old way to get the cheese, she is instilled with just enough confidence to keep going. She then informs me about all the things that four-years-olds, five-years-olds and six-years-olds like to do with their spare time. “Sometimes four-years-olds really like to get cheese out of the fridge because they are feeling grown up, but four-years-olds also really like to get the mail. AND they like to unlock the door when the babysitter comes. They get very upset when their moms do it for them.” When she says this she tries to align her gaze with mine. Almost as if her general assessment of four-years-olds is directed towards me.

When we were moving last winter and people were coming to look at our house, A would try to take direction of the tour. She had seen enough Fixer Uppers that she felt like she knew her way around tour-guiding houses. “And this…” she would say, “is the room where Mom puts all the things she doesn’t want to put away.” She would then quickly transition to the Master and and all it’s dazzling features. Including the accompanying “ensuite”. Let me tell you this. There was nothing ensuite about that bathroom. The house was 1400 sq. ft, built in the fifty’s, and probably updated once in the seventy’s. It worked for our needs, but it definitely did not have an ensuite.

A likes to talk a lot and fortunately for her, unfortunately for me since I am the topic of it, she has plenty of opportunities to exercise her skill. At E’s Early Intervention Playgroup she told his teachers, “My mom doesn’t have time to play with me ever so she hired a babysitter to do it instead.” This is accompanied by A putting her positive spin on the situation. “Isn’t that so nice of her?” I told them that I recently hired a babysitter to help out and when we got home I went over with A all the times that day that I had played with her.

My mother-in-law has been visiting this week, which has been wonderful to have the help. She has been getting the kids for me in the morning so that I can sleep in. On the first morning that she got up with them, I overheard A giving her the rundown of our household. “Every morning I wake up first, then I go into E’s room and I play with him. Then I have to take care of him. I feed him breakfast and make sure he is safe. I help out with my brother A LOT. Mommy really likes to sleep. Sometimes she sleeps so late that we miss lunch.” She probably would have kept incriminating me, but I ran out of my bedroom faster than I have ever gotten up in the morning and interjected. I let my mother-in-law know that A sometimes goes in first to get E while I get dressed and plays with him in his room. The breakfast that she gets him consists of old Easter, Halloween, or Christmas Candy that she hides throughout the house. Lastly, A mixes up her meals and often mistakes breakfast for lunch. I am grateful for a mother-in-law who knows me well and knows that I am quite involved with my children and would never leave my “four-years-old” to care for my highly active two-year-old with autism.

I realize how easily my praise for A goes to her head. My telling her that she does such a good job helping with her brother and that I appreciate her help, translates in her mind to pretty much her running the house and being a super awesome four-year-old who takes care of her brother all the time. My sleep deprived pleas to her at four am to go back to bed and that I really like my sleep translates to me liking my sleep so much that I sleep through not one, but two important meals.

A is very precocious and it’s cute, but it more often borders on her thinking she is actually in charge. What is it with kids? You give them a compliment and they internalize it forever. I remember as a kid, someone said I had a good voice and I started practicing everyday in my room dreaming of the day that I would be discovered and turned into a famous pop star. After all, someone did say I had a good voice. Why wouldn’t that happen?

We hate to discourage A from being confident, but sometimes we do need to put a dent in her massive ego. We remind her that we are the parents and she is the child. She responds with, “Okay Mom”, or “Okay Dad”, and runs off. We know that deep down she still thinks that she runs the place. The next person who comes over she will be telling all about how Daddy loves video games so much he should have a video game themed birthday party and Mommy feeds us Diet Coke allllll the time.