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A Story About Clay and Skepticism

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When I was 6 years old, my older sister took a pottery class. We lived in Columbus Ohio at the time. While we did not have a lot of money, there were some community free one-time classes that we were sometimes able to attend. Because we did not have a lot of money, this kind of thing was more of a special experience.

My sister brought a home a bowl from the class. What interested me about this bowl was that it air dried. I had seen videos on PBS about making things out of clay and putting them into the kiln. This was something I had never heard of! I made things out of play-doh but those never dried into anything tangible like a bowl. She told me about her class and explained the clay to me and how it was already dry but what would harden up even more.

Everything that my older sister did was interesting to me. I envied most activities got to do and toys that she got as gifts. This was no exception.

I was in awe. It became an obsession. I watched it in continuous astonishment throughout the day. Most of my brain believed her, but there was a small piece that thought maybe she was mistaken. Or perhaps the teacher was mistaken.

How could something like play-doh turn into a usable object.

I couldn’t get the thoughts out of my head. I would play a little bit and then come back to this bowl. I’d touch it softly when no one was looking to see how far along we were on the process.

When you are a child, time goes on forever. This story may have spanned a few days, but because I was younger, I don’t remember exactly the timeline.

What’s important is that I just didn’t think it was hardening and I was beginning to think that one of us had been duped in this situation. I even felt a little bad for my sister. Poor, naive, going into this pottery class so excited to make her masterpiece. The teacher was an art major, but of course as a child, we always know better than anyone else. It was definitely a possibility that she was wrong.

After being warned off of touching it a dozen or so times, over the span of a few days maybe, I lay in bed at night thinking about the bowl. I wanted to believe in this magic, but my belief was fading.

My sister and I had bunk beds. I was on the bottom. She was on the top. I was pretty sure I could sneak out after she was done reading to check on the bowl. I needed to do it on my own without people telling me to stop touching it or to get away from it.

Our bedroom was upstairs right by the staircase. The bowl was downstairs on the dining room table just off of the staircase a bit. I checked on the top bunk to see if my sister was asleep. She was. In the hallway, I listened carefully for my parents. Were they still awake? Not hearing anything, I made my way downstairs. I checked on the bowl again. Finally in peace assessing the masterpiece. Again I was disappointed.

Since no one was around, I decided to test its strength. Pretty sure they would thank me for this later. I picked the bowl up off of the table and raised it high above my head. With force I threw it down on the ground. It made a huge breaking sound because turns out it was dry.

My parents and my sister came down to see what was going on. They looked at me standing guilty by the table and the bowl broken in pieces all over the floor. My sister was devastated. She already saw me as the obnoxious little sister and let me tell you, this did not help things at all.

My parents were so confused. What in the world? Why did you wake up in the middle of the night to come and break your sisters bowl? I didn’t know really how to explain it except with the truth. I wanted to see if it was dry. I don’t remember the rest of what happened. I am sure I was duly punished, but there was no replacing my sisters bowl.

Whenever I complain about my sister being mean to me as a child, this story inevitably comes up along with a few others. But, I can’t blame her. It was pretty weird of me.

POST NOTE:

Later in life, I was diagnosed with OCD and incidents like this made a lot more sense.

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The Incident

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To start with, both of my kids have terrible teeth. So do I. Isn’t that the way it goes? To add to this, until recently, E has not let us anywhere near his mouth in terms of brushing. Other special needs parents can commiserate. Teeth are one of the last things on the long list of things to take care of with a child like E. I have taken E to the dentist for his 6 month check-ups to get him used to the idea of the dentist. He has responded well but hasn’t let her do much in the way of an actual checkup. One day, after E fell asleep in the car, I noticed his teeth. The ones he never lets me get a close look at. They were rotting through. The next day at school, his teacher called me to tell me that one of his molars had chipped. E is a grinder. Whenever he gets excited he grinds. The dentist and I had talked about needing to put E under to fix his teeth that I was sure were deteriorating, but we wanted to wait a bit longer until there was more obvious damage. I knew it was a thing we had to do most likely, it was just a matter of when.

We chose a day. I wasn’t too nervous about it. E has been under before. Two different times for minor procedures. Procedures that took under 30 minutes. This was going to be about two hours. The dentist wanted to x-ray, do a cleaning, seal his teeth that didn’t need fixing and just get a general idea of what needed to be done. She said that she could restore the front teeth but those fillings often don’t adhere as well and need to be fixed later. Wanting to avoid going under again I told her to just pull those. E has done a lot better with doctors lately and I wasn’t worried about the waiting time before the procedure as much as in past times. E did well leading up to the procedure. He was scared when we took him back to the OR, but he let them put the mask on, and fell asleep pretty quickly.

Often times I look back at situations in my life and I think of the person before the situation. The person who has no idea what is going to hit her. What I thought would be a very routine procedure, and it was in a sense, no complications, turned out to be a traumatic experience for the both of us. I remember waiting for him to wake up and thinking, the worst of it was over. He might be a little grumpy, but I would take him home and we could watch a movie and lounge for the rest of the day. Turns out I underestimated the situation quite a lot. A typical five-year-old, I could have prepped for the surgery. I would have been able to explain what would happen. He would understand that teeth fall out, and they grow back. I would have been able to explain why he was hooked up to wires and most importantly, I would have been able to adequately comfort him. That is what kills me the most with these situations. I feel helpless. I have no idea what is working for him. If I am helping him, if I am making the situation worse. I don’t know what he needs from me. I do my best anyway, trying to guess what he needs. It’s such a hard thing as a parent, to see your child in so much distress and not be able to do a thing.

They told me in the recovery room that he would start waking up slowly and may get a bit squirmy and grumpy. After 40 minutes of waiting, I asked the nurse when he would start to wake up. He said it could be up to an hour. After he left the room, E sat straight up. For 10 minutes he just sat there rather catatonic. I thought the worst was over. I thought I had lucked out and he was going to be fine. No grumpiness. However, right at the 10 minute mark, he seemed to realize what was happening. He started grabbing at the wires, he started screaming and trying to get away from everything and nothing. For his privacy, I’ll won’t go into the details of the behavior. It’s sufficient to say, he was very upset about everything. He was feeling funny about the anesthesia, his numb mouth, the blood, the cords, the new feeling in his mouth. It was a long 30 minutes of trying to calm him down and keep him from severely hurting himself. I almost asked if they could give him a sedative, but I thought that once we got out of there and he knew we were going home that he would be okay. In the past that has worked. This time he was too agitated, disconnected, and out of control to be able to realize what was going on. He wouldn’t sit in the wheelchair so they had to wheel both of us out with him on my lap flailing and screaming. A few years ago, I was very aware of E’s movements when he was in this kind of state. I anticipated his moves more and acted defensively to avoid getting hurt. It didn’t work all the time, I still had my share of split lips, black eyes, broken nose, etc. This time not as trained as I used to be I took my eyes off his head. We were about to leave the hospital, and I was keeping my eyes open for my sister who was driving us home. Right at that moment, he hit his head back at me full force straight toward my face. There was a huge crack and everyone around me stared in shock, not sure what to do. I told them I was fine, because I didn’t really have any other options at this moment. I just wanted to get E in the car as quick as I could. With the help of 3 people, we finally got him in. My sister dropped us off at home and the meltdown continued. I couldn’t take my eyes off of him for more than a second or he would try to harm himself. Out of all of his meltdowns, this was the worst. Adding to that, he is a lot stronger than he used to be. With my nose in so much pain, I had to sit there and try to hold him and keep him safe. I had no idea if this was making it worse or better for him. I just was trying to do anything I could to help him and keep him from harming himself. I had Eric come home from work early and help me, but his work is an hour away, so I still had to wait. When E calmed down enough to look in the mirror he was so upset. He kept asking for his teeth back on. I was heartbroken for him, not being able to explain in a way that he would understand what had happened to his teeth. I finally was able to take advil once Eric got home, and he took over for me. I shut myself in my room for the rest of the day. My nose was hugely swollen. It took me about 3 days until I felt I could parent again. His behavior currently is not as bad as it was that day, but he’s still had an increase in self harm and meltdowns. The third day after the surgery, he started to have a meltdown. I felt like I was up to the task again to help him. I was nervous about it, but I tried to comfort him and help him. I started showing him old photos on my phone and he started to calm. After a few minutes, he turned to me and said, Mommy big hug? I gave him a huge hug and he stayed that way for a full minute. I felt like maybe I was adequate as a mother after all.

He doesn’t understand the situation still. He still asks me to put his teeth back on daily and then tries to take my teeth off when I say later. I still have pain where he hit me. The black eye went away, the swelling has subsided some and I went to the doctor for an x-ray. The doctor confirmed a break but didn’t think that it needs to be reset. He thinks the crookedness is because of swelling. I guess we will see. If I’m still having problems in a few weeks, I will go to an ENT.

I’m not sure really the purpose of writing this is. Not for sympathy. That is usually why I avoid writing about certain things. I don’t want the pity. I know that I go through hard things and this was difficult, but I am overwhelmingly grateful for all of the blessings that I have. For my healthy children, for an amazing dentist, for amazing nurses that helped us through it. For family, for friends. Things could always be much worse than they are and I am grateful for my situation. Writing this is mostly cathartic. And a little bit about sharing my story. There are a lot of things that happen that I choose not to share. I share tidbits here and there, but a lot of the really hard stuff I don’t. My life is so much more than autism and I like to celebrate everything. When I do share, I like the humanity of sharing my stories and hearing other people’s. We live in a culture of everything being perfect for the internet. Everything is curated for social media. That’s not life. Life is real, full of good and bad. Hard and harder. Joy and happiness.

The Change.

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I think it would be interesting to be a doctor that diagnoses autism. A family comes to you in a very vulnerable place. You give them the dreaded diagnosis and they go home and learn how to deal with it. The next check-up, the parents that you met last time are just a little stronger. Then the next time, and the next time. You see these changes happen. Until 1-2 years later, and they are no longer the person that they were at the initial appointment. It is a metamorphosis process of sorts that you are forced into as parents of children with special needs. No one asks for this life, but you take it and you adjust, and you become the person you need to be. Out of necessity. It would be hard to give the person the diagnosis, and know that you are drastically changing this person’s life. Obviously, the doctor is not actually the one changing their life, but it is the onset of their new reality. The actual diagnosis.

I would never want to go back and live that 6 months following diagnosis again. It was a dark, confusing, hard time. When I see parents about to get the diagnosis/ ones who just did, my heart goes out to them. I hurt for them knowing what is to come. I give advice, but nothing I can do can change what they are going through. You just have to step aside and watch them change into the person that they need to be. As they learn to do autism their way. Don’t get me wrong, I love the community in the autism world, and I don’t know what I would have done without people’s help along the way. Those who answered my questions about therapy, behaviors, self-care. But nothing can take away that stage that you must go through to be the Autism Parent you need to be.

I distinctly remember a meltdown that E was having one night. He was out of control. Literally. I don’t think he had actual control over what he was doing anymore. Nothing would get him to calm down. I was holding him in his room in the dark trying to get him to go back to sleep. He was flailing and trying to move everywhere. I was holding him as best as I could to keep him safe from himself. I could not comfort him. I just sat. I held it together at first, but then he wriggled a bit from the position I was holding him in and head butted me in the lip. Hard. My lip was split, swollen, and bleeding. That instant of sheer pain destroyed the barrier that was keeping me together. I sat there crying, holding my son, pleading with a higher power to help me know what to do. I thought in that moment, I cannot do this. I am not strong enough to handle this situation. I wondered why I was given a child like this. I felt claustrophobic, wondering if there was a light at the end of the tunnel. My husband came up to check on the situation. He took E from me and had a turn trying to calm him down. I went into my room and cried and cried and cried. I felt like a failure, unable to calm my own child. I thought it impossible that I could stretch any further without breaking. But I did. The wounds heal into a sort of armor, and you get up and you do it again and again and again. You get used to people staring in public when your child melts down. You get to used to the comments of others, strangers and sometimes those close to you even, about your parenting. You get used to having to dodge your child’s aggressive behaviors as if you are in a boxing match. You get used to functioning on 3 hours of sleep in a 24-hour period. You get used to filling out paper work and going to countless appointments. Strong people are not born strong. They are made.

Postal Head Games.

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I’m an online shopper. I get a lot of stuff online. Diapers, wipes, cleaning supplies, clothes for me, clothes for the kids, books. You get it. There are so many pros to online shopping, it’s hard to say no. Free shipping, cheap prices, not having to go into a store to find said thing. It used to be just Amazon that did the free shipping thing, but now all of the websites do free shipping or at least free shipping after 50 dollars. It’s gotten to the point where if a website actually charges me for shipping, I get offended. I scoff. I cannot believe that they would dare add a 7.99 shipping charge onto my order. I’m so spoiled. We’re all so spoiled with the conveniences of our modern world. With that said, I lead into my problem.

It’s a very first world problem, but it is a problem. Any online shopper will sympathize with me I am sure. The mailman. The deliverer of my goods. The man who judges every purchase, every bill, how many packages I get, where the packages are from. I get a junk mail letter that looks like a collectors notice. I rip it open and relieved to see it is just a junk mail fake out, I want to shout back out the door at the mailman. “No worries! Just a false alarm! We actually are quite responsible with our finances!” The more packages I get, the more I feel like he judges the bills that I get. “Hmm… a second bill from the ENT. Maybe she should spend more time paying her bills and not ordering packages”. I think of all the mail I get and what my mailman can gather from me based on my parcels, magazines, letters, and so forth. He knows all my health problems, well at least the many specialists my family and I see. He knows we are LDS because he sees our church magazines come monthly. He knows we have a lot of family in Utah who send us letters and packages. I just feel like the mailman could be part detective. Why hire a private eye for anything when you can just question the mailman.

At first most of the stuff I ordered was from Amazon. So, he’d bring my big package of Subscribe and Save and I’d say, “Oh there’s my monthly supply of diapers. Thanks”. Then, I’d get another box and I’d say, “Oh, there are my wipes”.  After a few packages I start running out of excuses. I want to just yell out after him, “My son has autism!” I don’t know what it has to do with anything, but it seems like a decent enough excuse to use.

A recently had a growth spurt. When my kids have growth spurts they grow like two sizes at once and then just stay there for a year or so. So, I ordered her summer clothes and new shoes at the beginning of the summer. Then literally two weeks later she sprouted out of everything and I had to order new things. I guess what online ordering does have to do with Autism is that it’s hard for me to get to the store. So I buy a bunch of things, try them on, and ship back the ones that don’t work. I know that is easier for me and it’s nothing to be ashamed of, but I cannot help feeling guilty and sheepish when I get the packages in the mail. The worst thing is, companies lately love to send things out all individually. I don’t know why they do this. It’s not great for them long term. We see all those boxes and we become ashamed, or worse, they come on a Saturday when the husband is home and he freaks out and starts frantically scrolling on his phone checking the bank accounts to see if you have spent all of everything. They should have husband safe delivery that you can check when you order something. Because like I mentioned before, when husband sees it, you have to explain every purchase and then you have to look really responsible and return at least one item. You say something like, “Oh, I was just ordering these really to look at them. I am going to return them now that I was able to feel the beautiful quality of the clothes.” Then you ship them back cursing the stupid company that shipped them out to be delivered on a Saturday. It’s not even that the wife is overspending. At least not in my case. It’s just that husbands don’t really know the price of how much things are. If it were up to my husband, the shoe budget for the kids would be three dollars a season.

The last two weeks, I have had a lot of packages coming. Therapy items for E, clothes for A, cleaning supplies for the house, a few books to read for my upcoming trip, maybe some clothes for me on the side. Just to try on of course. Then return.

The first three packages that were delivered were delivered on the same day. The mailman set them down on the porch and said, “Got some heavy ones for you.” I used the diaper excuse, It’s the default, the first one that comes to my mind. The next day, I got a few more. “Oh, looks like they decided to send out everything I ordered on the same day LOL.” The next day, even more. So embarrassing. Saturday I get some with the husband home. Some of these packages I am getting are literally a humongous box with a tiny little box of cabinet locks for baby proofing. I am sure the mailman just loves to watch the drama unfold as he delivers his Saturday goods. Out of excuses, the first reaction that came to me was one of faux shock. If you can’t beat them join them, right?  “Whoa, so many packages? What the heck?” I ask. Then I shake my head incredulously as I take them from him, as if I am not the one who ordered the J. Crew boxes piling up in my arms. As if it is a burden and the company is randomly sending me boxes of free clothes to annoy me.

Today, the mailman just delivered one package. It was the last of them. The final try on of shoes for A. From Mini Boden. Mini Boden is based in the UK. So even if the mail man did not know what was in there, it was written on the customs form on the box with the price stamped right on it. No excuse needed. I opened my mouth to say, “A, some shoes, for you to try on and probably we will return most of them,” but I was out of energy.

Hoping For What?

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As humans, I think we are designed to look for the light at the end of the tunnel. We gear up all the energy that we have, get a running start, and do everything we can to get to that light. But what happens when that light is not as visible? What happens when there doesn’t seem to be an end in sight?

I’ve been having meeting after meeting lately while we prepare to transition E out of Early Intervention and into the next phase of services. Part of this is a Future Planning Meeting, where we talk about what my hopes and goals are for E. I remember the meeting last year. I was optimistic. I had heard so many success stories about kids who after a year of therapy, their progress really took off. The speech kicked into place and things just got easier. When E’s third birthday rolled around, I remembered that meeting and I felt a loss all over again. A loss for all the hopes that I had for him in the past year. My original hopes were adjusted when he was diagnosed, and I had acquired new hopes. E actually has progressed. He has made a lot of changes. But as any parent of a special needs child knows, with progress, comes new difficulties. E becomes more aware of his environment. E becomes more anxious and sensitive to those things around him. E becomes more fearful. E becomes destructive as he learns to explore his environment.

As he has learned to say certain words and babble I find myself so excited for him. So excited that he is learning how to form sounds, and say words that are functional. E hears a door open somewhere in the world; on the tv, upstairs, in the neighbors house (That E Boy has supersonic hearing when he wants to). He says “door opennnn”…. I get so excited that he is aware enough to notice that the door is open and to say that phrase. I start to think, “Wow he is going to talk. I am so happy for him! Things are going to get easier.” But then that excitement fades as it stays the same. The same standstill. Last June, he imitated his first word, I was elated. A year later he does not imitate that word anymore. He does not imitate more words. He imitates a different word. I am ready for the progress, but it seems to just be parallel progress.

Preparing for my next Future Planning Meeting, I thought, “What are my hopes”? The meeting came around, and they asked the questions. “What is E doing differently this year? What has he overcome? What are his strengths”, and lastly, “What are your hopes for him?” Adjusting what I want, I told them I don’t have specific goals. My hope? For him to be happy.

Having a child with autism, it often seems suffocating. I get to a breaking point where it seems I can not stretch anymore, but then against all odds, I do.

Today, I heard a crash from the basement. I went down to find E shattering an heirloom. Picking it up again and again. Smashing it into thousands of pieces. The one thing I had that had been passed onto me from that grandparent. My heart broke. I was devastated. I can tolerate him pouring fruit loops all over the floor. I can tolerate him ripping a key off of my keyboard. I can fix those things. What I can’t handle? Him destroying something so irreplaceable and special to me.

Hope can be dangerous when you are dealing with autism. Every child is so different and I have no idea what to hope for. I hope that I can handle the next year. I hope that I can be a good parent. I don’t hope for things to get easier, and I don’t hope for progress. I want it. But if I hope for it, I don’t think I can handle the pain from that being crushed. Again and again.

Coping.

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Sometimes it totally catches me off guard that E has autism. I look at him asleep in his room and I see the pictures of him on the wall as an infant and it just hits me. The reality of it all. That my baby E has autism. It’s like a punch to the gut and I feel like I have had the wind knocked out of me. Especially days like today where he is really hard and the autism is more obvious. I look at that those old photos and with them are my expectations of what I thought he would be like and what I thought my life would be like. I expected him to be a typical little boy. He would go through the same stages and milestones as A. I see those pictures and it’s like they were another lifetime. It’s almost as if that boy still exists out there, and that mom still exists out there. And then I am here. People try to be optimistic with me. They say, he will be fine, he will do great. I hope for those things too, but what they don’t understand is that I am still dealing with the loss of what I thought he would be. I am still grieving my old life. To me in this moment, Autism is everything. I am grateful for what I have. I am grateful for the resources I have, but sometimes I am still just sad. And defeated. Sometimes it takes every ounce of energy to run after him again. Or to ignore the intense embarrassment I feel when he is shrieking and I am taking him out of the restaurant while everyone watches. Or feeling anxious as some stranger at a store comes over and tries to play with him and tries to be interactive. I pray that he just looks at them once so the moment will be over. Sometimes it feels like I have been dealt more than I can handle. For those days, there is writing and David Sedaris.

Janmohamed Pseudo Christmas Letter

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If you’re not sick of hearing about us yet, here is our year in review.

 

Janmohamed Family Highlights

January: Eric accepts new job working for Mars, the Mars responsible for making M and M’s, in Toledo, Ohio. Mars recently acquired Iams Pet Food, and Eric is working at one of the Iams Plants. I fly out to Ohio to find us a home accompanied by my sister because Eric was busy tying up loose ends at Young Living. Found a home in 48 hours. Harassed the landlord incessantly, telling him I was an amazing tenant over and over again. I amassed 26 back and forth emails before he called me to tell me that I got the house.

February: Mars packed us up and moved us, very stress-free. Flew to Ohio. Thought it would be fine not putting A in a preschool for the rest of the year. Majorly mistaken. After 7 days of pure chaos, I found a preschool for A before we even had our internet set up. After touring the preschool and liking it, I asked them if they could take her the next day. They did and I was able to finally start unpacking in peace.

March: Trips back and forth to Lexington, Kentucky to visit the sister. These continued until July when she moved. I do not know if this is correlated to us visiting her every possible chance and setting up our big air mattress in the center of her living room each time. I tell myself it isn’t.

April: Trip to the Windy City. The kids traded off throwing up in every restaurant we went to. We amassed an entire new wardrobe, because amazingly after the second and even third time we never thought to bring a change of clothes. Target for the win. And the Chicago Outlets.

May: My birthday. The most important time of year. Oh and E’s I guess is in May too. We had his birthday party in Lexington. Surprise Surprise. Aforementioned sister also graduated with her Masters from University of Kentucky that weekend so most of the Bourgerie Family was in town. 

June: Beach visits. Went to Detroit. A visit from the Uncle and Aunt in Minneapolis. They were on a niece tour visiting all their nieces East of the Mississippi. We were honored to be on the tour. Humidity in Toledo starts to get thick.

July: Fourth of July in Kentucky. Trip to Utah. Stranded in Houston. We finally made it to Utah in the exact time it would have taken us to drive. Lots of Bourgerie and Janmohamed family time. Takes a bit of adjustment for the kids to get used to time change and new place.

August: Home from Utah for the last half of August. A few more beach days. Lots of park days. Approved for Respite Care and my life changed. At the start, I usually just sat in a parking lot and ate Burger King and thought, this is what life is really about.

September: I go to New Orleans for an Autism Conference. Temple Grandin and me become pretty much BFF’s. My mom and I walk around the French Quarter. We find out the difference between Jambalaya and Gumbo. I eat Beignets and tell my mom all about New Orleans based off of what I learned in Princess and the Frog.

October: Visit from Older Sister. We visit Motown Museum and I buy the most comfortable sweater of my life. Everyday, sister would say, Oh that looks amazing, I really want it too. I think I am going to go back and buy it. When we go back, she changes her mind. Instead she buys a bunch of who knows what from The Henry Ford gift shop.

November: Visits from both Grandmas and a Grandpa. A’s birthday. Grandma Janmohamed is here for it. We host a party in our humble abode and surprisingly it goes well with 13 kids and half of their parents. Kids get their faces painted and have balloon animals. We go to the Art Museum twice so we can play in the kids family center, and both times it is closed. We become very cultured in the actual art since no choice but to visit and I am shocked at how well the kids do. Thanksgiving brings the Bourgerie grandparents. Amazing food made mostly by my mom. I do make some green beans and a quick bread. We see Coco, but on our way there I spill gasoline all over myself, because apparently I can’t pump gas. My mom tells me she will be sick if she has to sit by me, so I buy myself a Christmas present at the mall in the form of a new outfit. You think by now, I would bring alternate outfits for the whole family.

December: Christmas tree, Hallmark movies, and Frankenmuth- the Christmas town.

Most insane year of our lives, but also filled with a lot of fun times. Merry Christmas

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.

Optism Perks

AC1 Comment

When we first told A about E’s autism diagnosis and what that all entailed, we tried to focus on the good. What made him special. What his strengths and weaknesses vs. her strengths and weaknesses are. So it was kind of cute when she started referring to it as “optism or optimism”. E would be melting down somewhere and she would say, “That’s my brother, he’s just two. He has optimism.”

I went to an Autism Conference last month and one of the speakers there, Autism Daddy*, did a presentation on Autism Perks. It got me thinking to what my Autism Perks are. It’s so easy and completely understandable to get caught up in the negative. Sometimes focusing on the perks give you a little boost. Seeing the good in a hard situation.

1. Behavioral Experts on speed dial. When I had A, I was at a loss of what to do most of the time. I wanted a handbook on her. How do I change her awake times from night to day? What behaviors should I let go and what behaviors should I worry about? How do I get her to eat this food? There were so many questions, and people would tell me, kids don’t come with a handbook. You have to figure them out through trial and error. Hundreds of dollars of Amazon Books later, I have her about halfway figured out. With E though, I do have a handbook. Well, not an actual handbook, but something even better.  A whole team of experts at my disposal. Yesterday I had an appointment with his Developmental Specialist, and we trouble shot his sleep issues. By the end of the appointment, we had some good ideas worked out and we tackled some of his self-harm issues. I’ll put them into play to see if they work, and if they don’t I’ll text her or see her again next week. I literally have five people with masters degrees helping me figure out E. It’s awesome. Also, equally awesome that they get just as excited about his milestones as I do. When I’m in tears over something amazing he has done, they are too. It really does take a village, and I’m so happy to have them at my fingertips at all times.

2. You know the Cheers theme song? “Sometimes you wanna go where everybody knows your name” Well, that’s another perk. Everywhere I go, people remember and know my name. We stick out thanks to E’s fun outbursts. They’re not always him screaming, just things that draw attention. Today he grabbed my wallet out of my hand and threw it to the back of the line when I was paying for food at a restaurant. People are nice though. They all know me and E and A. I live in a city, but I get to enjoy a small town feel. Costco, Once Upon A Child, Kroger. They all know my name. It sounds cheesy, but it gives me the sense of community. It can get lonely going through the monotony of the day over and over again. When people remember you and know you, it makes life that much friendlier. So thank you E. Thank you for throwing my wallet to the back of the line. We made some new friends when they helped me pick up my change, and credit cards.

3. Guys, I have mad muscles. Like I am insanely strong. I pick up my over 50 lb. suitcase when I am traveling and place it by myself into the overhead compartment with one hand. This may not sound amazingly strong to you, but I didn’t used to be able to do this. You know those people who ask the cashier to scan underneath their cart because they don’t want to lift up the heavy items? Yeah. That’s not me. Not with my strength. I pick up all the stuff from the bottom and put it on the conveyer belt like it’s no big deal. Because really, it’s not. For me. Lifting E all the time when he won’t walk, or when it’s not safe for him to walk, or when he is having a tantrum, it builds up my strength. It also can throw out my back, so I have to be careful, which brings me to the next one.

4. Handicap sticker. Man, this is a lifesaver. And honestly, it probably would not be that big of a deal if I didn’t have E. Which I guess is the point of it. After severe back pains from holding him all the time in the parking lot while he tried to get down and run into a car or having to turn around by the time I got into the store, because he was already worked up from the walk, I am so glad to be able to park close. At first I felt guilty using it because I thought well, he’s not in a wheelchair and I can physically carry him. However after many sleepless nights filled with back pain, I warmed to the idea.

5. Before I had E, I would always bring headphones with me on my flights. I hated being stuck without them if there was a crying baby. Now, I am immune to it. My sister and I were on a flight but not sitting together. After the flight, we were getting off the plane, and she told me she had not really been able to sleep because of the crying baby. I was shocked. I had not heard anything. When I do hear a crying baby, I am so happy. It means it’s not mine. Hearing someone else deal with it just makes me feel like I am not the only one who has a baby or toddler that screams bloody murder at the grocery store. Also, after 2.5 years of it, there is almost comfort in the sound. Well, maybe I wouldn’t go that far, but almost.

6. Last but not least. Free babysitting. This is the best. Time to just do whatever I want. When I had A, I remember my friends who had kids who were in school and just imagining the day that I too could go to the grocery store by myself. Or maybe just read by myself in my room for a few hours. I just longed to do something by myself that was just for me. I felt so lost in motherhood and wanted some escape sometimes. I thought of hiring a part time babysitter, but financially it was not really an option. With E, it’s definitely more intense, the time that I spend with him, but those respite care hours that I spend by myself, I just feel really lucky that I have the luxury of time off during my week from being a mom. I feel recharged after, and just a more effective mom because of it.

There are many more perks that I could list. But I wouldn’t want to brag too much. 🙂 All in all, I’m pretty grateful for the good and the bad in my life. I feel pretty lucky to have the family that I do.

* http://www.theautismdaddy.com/