Essay #9: Sink or Swim

I have been sharing personal essays on my journey with autism with my daughters, on mom life, grief and mental health. Most essays are from life in fall of 2017. WARNING: my essays contain cursing. I hope they make you smile, I hope they make you cry, I hope to spread an understanding of high functioning autism and mostly I hope they allow other moms to not feel alone. Names have been changed for privacy. To read previous essays click on the Essays category tab at the end of the blog post.

Hot pink skirt lol

Mind inflicted fasting occurring again. Why does my brain do this to me? As though I want to punish my loved ones for being shitty to me so I stop eating, thinking it’ll somehow hurt them, which is ridiculous because for one, they don’t even notice and two, I’m only causing myself to suffer. Sucking energy and life out of my body, giving my brain an excuse to tell my body to go to bed and ignore everyone and be nonexistent. I might just be a crazy person.

Others may start to agree. I chopped my hair off. My naturally curly hair was becoming a heavy weight on my head, a large poofy frizzy helmet I wore everyday. After seeing myself in a few photos lately I decided the hair needed an upgrade. I cut off close to eight inches. No one has even noticed, maybe two people, and that makes me kind of sad and kind of happy no one pays attention. I read once, watch out for a woman who drastically changes her hair, she is changing her life. Damn right. I needed to feel fresher and simple and light. That’s my goal right now, be lighter.

Over the weekend I felt controlled by a lot of people and I was angry being pulled in a million directions. Yanked between my PTO President duties, my teachers at my preschool, my family and my extended family and plus some friends, it was a tug of war with everyone needing a slice of my time. I’m the only one who is the boss of my physical self and my look and I think that’s why I cut my hair, I needed to have some semblance of control. It’s like I’m a toddler whose parents are trying to potty train, I control my body, not you. Monday came and I said, “that’s it! I control me, fuck you all, fuck this messy hair, let’s change it all!”

I feel like I’m drowning and everyone is pushing me under deeper and deeper. I want to swim and feel the sun, be my own center of light and love and let all flow from that place. I want people to feel love and joy when they are around me, not the stress and grumpiness I’m exuding lately. I have control over how I present myself to the world, which includes how I look and feel. If I’m honest with myself I care a lot about how I look. I’ve always loved fashion and wanted to look stylish and cute. As moms we get bashed, usually by other moms, if we care too much about those things. There is a general mom style out there that exudes an I’m not trying too hard look to give the impression you care just enough. I’m the one who rolls in with a hot pink skirt and it’s simply because it makes me happy. I find it fun. I’ve heard moms talk about other moms with comments like “oh she cares too much about her looks” or “she’s too focused on herself.” God fucking forbid we have a hobby or care about something other than our children! Shame on us. From the experts I’ve talked to as of late it is a wonderful idea to have a hobby that doesn’t involve your children. I read in front of them, exercise, paint, write, all in front of my daughters. They need to know hobbies and interests are important. Amen. Okay, off my soap box.

I think I need a dumpster, both physically and mentally. Journal writing is my mental dumpster. I started when Olive was a few months old and it became a habit that I can’t live without. It keeps me afloat. I dumped the extra hair on my head that was weighing me down. Now a physical garbage dumpster to throw shit away so my house will be more airy and less cluttered and feel more like a haven then a clutter zone. Goals.

Had to take the girls for flu shots and spent hours at the doctor’s office. HOURS. Simply because of Olive and Laurel being dramatic and screaming when the pediatrician came close with the needle. They were winning the Academy Award for best actresses in the preteen unnecessary horror side show category. Ruby was simple and had an attitude like “what the heck is your problem?” I was all for holding them down and jabbing it in but the doctor was more politically correct. I pulled out every trick in the book, bribery, sweet talking, yelling, stickers, commanding voice, nothing was working. The pediatrician told them it was time to close up shop and all go home, they would have to come back again. That did it, the thought of returning and reliving this escapade was enough for them to sit still and get it over with. Thank the Lord.

The three of them have been fairly healthy I have to say. I’ve been putting immunity essential oils on their wrists every day, maybe it helps. At least it makes them smell good. Sometimes bath and shower time at night sounds too exhausting for me and we kind of just do a quick washcloth cleaning and call it a night. Actually that’s a lie, we are lucky if there’s a washcloth involved. The days have felt long. I have been going 14 hours without taking of my shoes or bra and I moan as I slide them off. I’m forgetful, fidgeting more and losing hair. When you look up those symptoms you will find them under characteristics of depression. I would pride myself on my master anxiety hiding skills and that’s getting harder with all this crap, but you know what? No one is looking anyway.

I’m in the research generation, that’s what I’m deeming those of us in midlife with children. We have parenting information at our fingertips and we know too much. Ignorance was bliss for our parents and grandparents. Now we are being told what to do and not to do about every aspect of parenting and child development. We micromanage every minute of the day trying to follow the right guidelines and current research to make sure we aren’t fucking up our kids. Well guess what? We are fucking up our kids. I see it at the preschool too, no one wants little James to even get a scratch on him. How are they suppose to learn if they never are allowed to mess up in the first place? That’s why my girls freak out when they don’t do something perfect on the first try, they expect everything to be easy because we made it that way for them. No more. We are going to be a house of fuck ups and spills and miss steps. I don’t want their mental health to suffer from anxiety over doing things wrong.

I read an article about an 11 year old girl who committed suicide. Eleven! What? She was being bullied at school. Holy shit. I have so many questions when I hear about these things. Did her parents know about the bullying? Did the school know? Did the girl talk to anyone about it? Did she have autism or depression? Did her family go to church? Were her parents crappy or too demanding? I need to know! I worry for my girls, especially since I felt like leaving this world as a teen. I had faith though, I had a strong conviction in God’s plan for me and my future. I hope my daughters have that faith and know how much they are loved. It will get better, I promise my babies.

I managed to also squeeze in this week a visit to Gram, who is at a nursing home now and it’s much closer than her apartment was and that makes me happy, I can see her more. We now know she will never leave there and go home and no one has told her that. My mom and aunts and uncles want Gram to hold onto some hope she will be go home. Plus I think they really believe if they tell her we are cleaning out her apartment she will literally try to escape and find a way home, she’s that stubborn. I love hearing her talk about the past and times when she was younger. Yesterday we talked about the holidays and she was telling me they always had parties and use to get a stripper to come! I spit out my coffee and was all, “WHAT?!” She said Grandpa used to like them. I died laughing. She got all serious after that and told me, “you have to do that Jan, have good times that outweigh the bad. Make time for the good.” My laughter turned to tears. Then she started singing to me. We were sitting in the dining room and it had a beautiful view of the autumn trees, like we were on top of them. She sang On Top of the World. I don’t need to go to a therapist, I only need to be with Gram. She keeps me afloat.


Essay #8: Ready Mom?

I have been sharing personal essays on my journey with autism with my daughters, on mom life, grief and mental health. Most essays are from life in fall of 2017. WARNING: my essays contain cursing. I hope they make you smile, I hope they make you cry, I hope to spread an understanding of high functioning autism and mostly I hope they allow other moms to not feel alone. Names have been changed for privacy. To read previous essays click on the Essays category tab at the end of the blog post.

The green leaves are maturing to orange and red, the mornings are crisper and the air smells of autumn. Being outdoors in the fall is one of my Soul Fuels. It’s joyful when I can walk outside my back door and sit outside for five minutes, sip my hot coffee, take in a deep breathe of cool air and feel refreshed. Living in the middle of the woods allows me to step outside and just see trees, nothing else. I could be naked and no one would know. We easily take our living arrangement for granted.

I need to find more five minute Soul Fuels. While Ruby was at a birthday party over the weekend I took Olive and Laurel to the little lake in town so we could see all the changing leaves. I took pictures and pointed out certain trees to the girls but they moaned and groaned. I want them to enjoy nature, appreciate it and be thankful for it. Can I force them to make nature one of their Soul Fuels like it is for me? My mind slows down out there. I want my girls to feel that and learn to make time for it as they grow up. Maybe it’ll help them slow down the marathon suicide. Reality though, they are kids, I can’t shove it down their throats and make them feel wrong for not feeling the way I feel. I’ll just keep bringing up the beauty and pray it sinks in.

I had to take a day off of work last week because I was sick to my stomach. My body was yelling at me to take a break and I parked myself on the couch all day and watched some movies I’ve been wanting to see. I had to shut myself off. I call it a Brain Dead Day and think we all need it every now and then. Maybe I’m just getting older, I will be 40 in three months, but I’m feeling the need to slow down, take a few steps back from life and take a good look at it. What would I see? Would I see happiness, hiding in there somewhere? Would I see my children, as in really see them, who they are in the world? Matter of fact, how do they see me? What is their vision of their mom? Is it what I think it is or vastly different?

Would I see Michael differently? Maybe see him in a different context than the man I sometimes see before he leaves the house in the morning and for a small window at the end of the day. Day in and day out I run at a fast pace, getting it all done, but I don’t think I’m looking at any of it, as though it doesn’t matter for right now and I’ll save that for the future. I’ll spend time looking when I’m older or retired or in my 90’s like Gram.

I should have known I was in need of a Brain Dead Day because of all the stress I’ve been under, I use to see the need coming. That premonition started back in college, a way to deal with my anxiety then. I guess I’ve always had the tools I needed to avoid a panic attack but somehow forgot how to use them. When my parents were getting divorced my junior year of collage I had major stomach issues, so much to the point that I saw a gastroenterologist who ran a bunch of tests on me and my colon. Everything came back normal and he told me it was stress. I couldn’t believe it at first, how could stress do that to me? He assured me my parents divorce and my school work was enough. That doctor, can’t even remember his name now, was the first person to tell me to take care of myself first. Self care wasn’t a common term back then. How do I keep forgetting about it?

We aren’t that far into the school year yet and our patience level in our house is running low. I’m trying hard to focus on showing my family love and lifting them up in support but when they all come home grumpy and complaining and hungry I’m the one who bears the brunt of everyone’s madness. I’m Mom. That’s what moms do right? We take it all and love anyway. We just have to be ready for it. I have a hard time separating their feelings from my own. I let myself join in on their moods and bring myself to that level, as though my motto is “misery loves company,” but I need to fight that off. I don’t want my girls to have that motto as they grow up. It should be “happiness breads happiness.” They need to feel their feelings without me feeling them too, I have to listen and understand and love. Be ready to just love.

This week I met with the Student Assistance Team (SAT) to discuss my revelation that Olive has Asperger’s Syndrome. The psychologist was amazing and agreed we need to test her for Asperger’s, but they said they can’t test for that, just autism, and they wanted to check her for depression as well. The rest of the team wanted more time to get to know her but the psychologist was all, um, no, if she has autism she has autism, doesn’t matter if we get to know her more, let’s agree to start the evaluations. I was all, right on lady! I’ve been researching more and to me Olive is a text book Asperger’s Syndrome child. She is a super smart high functioning autistic person who doesn’t give a shit about other people, what she looks like or how you feel about her. Hello, that’s my goal life! To not care what other people think or how I look. She’s living the best life already, at 12! We should all be so lucky.

Olive doesn’t see it that way though, of course. She’s too hard on herself and she is going though puberty, is anyone happy then? I think perfectionism is in our genes. How do I work on that? I don’t want my kids to feel as though they have to do everything right all of the time, they are just kids. When I tuck each of them into bed at night I tell them I am happy they are my daughters and I love them no matter what. I hope they are listening. Olive’s negative self talk is not pleasant. She talks about it a lot though, almost like she wants my sympathy over and over again, she needs constant attention. I could suffocate this kid with positive reinforcement and it still would not be enough. It’s never enough. When she grows up she won’t have people always praising her every step of the way so I don’t want her self-esteem to hang solely on that, it has to come from within. That’s so hard to teach that self worth to a child, never mind one that has Asperger’s. My babies.

I’ve been squeezing in time after work to see Gram at the rehabilitation center. She doesn’t want to be there and keeps having tough days, throwing fits and frankly acting like a child. I don’t blame her though, she’s lived alone for over 30 years, since Grandpa died when I was in kindergarten. She is now squeezed in one small room instead of a two bedroom apartment. The room has tread marks on her floor so she doesn’t slip and she keeps calling them jail bars. She’s kind of right. Gram knows how to make me laugh, all her jail jokes are hilarious. I bought her a plant to keep on the window sill, my mom helped decorate the room a bit, we are attempting to make it feel cozy instead of institutional. I’m not sure she’ll ever leave the place and it is heartbreaking. Gram can’t put on a pot of coffee for me when I visit and I wish I remembered the last time I visited her at home and had some of her coffee, I would have cherished it if I knew it could possibly be the last. Sometimes I guess we aren’t meant to know those things.


Essay #7: On A Hope and A Prayer

I’ll be sharing personal essays on my journey with autism with my daughters, on mom life, grief and mental health. Most of the essays are from fall 2017. WARNING: my essays contain cursing. I hope they make you smile, I hope they make you cry, I hope to spread an understanding of high functioning autism and mostly I hope they allow other moms to not feel alone. Names have been changed for privacy. To read previous essays click on the Essays category tab at the end of this blog post.

I think I am in mourning realizing my daughter doesn’t have a typically developing brain. That sounds shitty to say and I would never say it out loud but I have to be honest with how I feel. I know she’ll be an amazing adult and I have to help her the best I can. There are times I find myself day dreaming about a normal life, craving what I think an average life should be. What is normal anyway? That commercial of happiness I use to dream of? What I imagine other families to be like even though I don’t know what goes on behind their closed doors? Happiness is a choice. I have to remind my brain that I choose to feel happy. Is it OK that I have to do that every single day or multiple times a day? I can’t pretend anxiety isn’t there, it has to be dealt with, but I can choose to process it and choose to do something that brings me joy. Who finds that kind of time?

Olive is now 12 years old. My autistic daughter is becoming a lady. We had her party over the weekend. I usually tell the girls we’ll invite one or two friends to our family parties and Olive said she doesn’t have any friends and didn’t want to invite anyone. My momma bear heart was breaking for her and I convinced her to invite a girl she talks to who we have had over in the past. Glad I did because they had a great time. Olive is so convinced she has no friends, I think she isn’t giving anyone a try at being her friend. She won’t carry on a conversation if it’s about something that doesn’t interest her. I don’t see how she behaves at school in social situations and I hope the director and counselor there are paying attention. She needs some help facilitating. I can only role play so much and then send her off into the world on a hope and a prayer.

We were missing a few folks for Olive’s party because Gram needed to go to the hospital. My mom opened the door to Gram’s apartment and found her on the living room floor, confused, not sure how she got there and she wasn’t able to get up. She wasn’t wearing her Life Alert button, of course Gram. They needed several EMTs and a stretcher to get her up. The doctors found she had a UTI and a blood infection in both legs. They think Gram must have hit her head when she fell and no one is sure how long she sat on her living room rug.

I’ve been visiting her at the hospital when I get out of work and she will be moved her to a rehab place soon. For being 93 she is fairly healthy though. Her heart, brain and blood pressure are all good. UTIs make Gram confused and they have been happening to her more and more the last six months. Gram and I were chatting yesterday afternoon in her hospital room and the conversation stopped as we watched a few minutes of TV, her favorite soap opera. She looked at me and asked “So, what are we doing here?” She seriously couldn’t remember why she was in the hospital. I giggled and thought she was joking but she certainly was not. I told her what had happened and she couldn’t understand why she wasn’t going back home. I changed the subject and we didn’t revisit the conversation.

God, I need my Gram! Please, I pray, heal her and let her get back home. She is my person, the one I can call and visit in an instant, listen and talk with for hours. Now is not her time. I know everything is in your time but can we compromise here? I have enough emotional turmoil in my life, Gram needs to remain my stabilizer.

I do it to myself, I’m fast forwarding my marathon suicide. I volunteered to be PTO president. That role isn’t hard, it’s just time consuming and I get text messages and emails twenty-four hours a day. On top of everything else in my life it’s just a spinning spiral of doom. At first I thought my turnaround response time should be short, show people I care about their concerns and ideas and what my thoughts were. Now I wait until business hours, that which I have set for myself, and feel no need to explain to anyone why I did not respond immediately. They’re parents, they get it.

I’ve been thinking deeply about why, why I agreed to run the PTO. I think I wanted to feel more equal with Michael. He’s a busy thriving doctor and I wanted to be busy and doing important work too, felt as though I wasn’t living up to my full potential. I felt as though being home with my girls wasn’t significant enough so I got a job and then I felt as though working part-time wasn’t worthy enough either. I needed to be occupying my time with serious work and producing substantial outcomes for the world at large, making a mark on society and playing my part. Now, as my therapist says, God love her, I just want to protect the house. I have realized raising these children is the most important work. Discovering I have a special needs child makes it feel ten fold. Now I want to back out of my volunteer work and my job and I feel as though that is impossible to ask of both those powers that be because it is only October and I’m signed on at least until June. June! Nine fucking months away. Now I’m hyperventilating. I don’t know if leaving my job after this school year is necessary, there’s just too much other baloney right now and I have to peal away some layers. Between my house, the preschool and the PTO, I’m managing too many people at once. No wonder my hair is falling off my head like autumn leaves.