Awesome, with Some Difficulties

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Dear Reader,

Last summer I got diagnosed with Autism before my 29th birthday. And it was confirmed after my 29th birthday. I had Autism Spectrum Disorder Level 1. (Story for why I got two professionals to diagnosis me will be told another time.) Having it confirmed after my 29th birthday was a relief. There was a reason for my social blindness, my ability to mess up simple communication, my tics I hid and my rigidness in routine. I wasn’t a freak! Or a loser! I was just different. My neurological wiring was different. Is different!

And that relief lasted 5 minutes. Then a health professional made a comment, and I don’t think they had bad intentions. But this someone didn’t agree with the diagnosis TWO professionals had given me. And they said maybe I had mild Autism but they didn’t see a reason for an official diagnosis.

And I was shattered once again and rejected. Ashamed of my Autism. My husband was supportive while I processed my diagnosis for several months

Then in March I finally told my mom and sister separately. And they both had to process what I was saying. But once I described the symptoms of ASD level 1 they accepted the diagnosis. Having autism explained a lot of my behavior in childhood. I then told my dad in April and he kind of acted like it was a bad thing. Probably because there is a chance my daughter also has Autism. Currently she’s getting occupational therapy for Sensory Processing Disorder, which is a neurological condition she will deal with for the rest of her life. I also ended up telling one of my best friends that I have Autism. And she was very accepting and I don’t know why I didn’t tell her first! I had this irrational fear that she would stop being my friend. But I realized the people who really care about me won’t mind that I’m Autistic.

Now I just want to accept who I am. I’ve always been autistic even though I didn’t know it. Being autistic has shaped my weaknesses and my STRENGTHS. My wiring has affected how I view and interact with the world. This isn’t bad or good it’s just my wiring. I want people to know the real me. I want to stop pretending to be a neurotypical person. Trying so hard to fit in has ruined my self-esteem. I’m on a journey to better understand and accept myself and to be true to myself.

This blog is going to be my journey of embracing the real me. And I hope I can help someone else who has been diagnosed with Autism as an adult, especially other adult women. Girls and women are very under-diagnosed compared to boys and men. We’re being missed it’s hurting our development and potential. But all are welcome here even if you’re not a woman with Autism. I hope you can benefit from my blog in someway. I hope to hear from others on the spectrum especially others who were diagnosed as adults. And if you just know someone on the spectrum or are curious about ASD you are welcome here. As someone who’s been bullied in person and online I want to create a safe place.

Please follow me along on my journey. Hopefully we can learn from each other. I expect this journey to be Awesome with Some Difficulties!

Sincerely,

Deanna Javier

A Lost Dream

When I was a preteen at one of my dad’s friend’s party a woman asked me a question. My mom had to translate because my Spanish was bad. She asked, how many kids did I want when I grow up? And I said four. And my mom said, Aye, no that’s too many. Both women laughed at my answer. I didn’t see what was so funny. I really wanted 4, the plan was for 2 boys and 2 girls.

Why was it so funny, most of the women at that party came from large families. Granted most of them had significantly less children than their parents did. My own mother was one of 13 children, the youngest girl and only two of her brothers were younger. A couple years later she had confided in me that she wanted a third child but my father didn’t want one. After my parents split up my mom eventually had her third child another girl with her boyfriend. And she’s been a much better mom to my half sister than when my sister and I were growing up. It turns out being a teen mom just wasn’t meant for her but being a mom as an adult was something she’s capable of. I found out on my own that it doesn’t matter what your age is when you have kids, parenting is just hard. Though it does help to be an adult when you have children!

I always wanted a big family of my own. I was going to create the family I always wanted. One without the family drama and no drunk father. I was going to be an understanding parent and my partner would be equally understanding.

I worked with children since I was 16 years old in daycare and classroom settings. Working with kids was fun and kids don’t judge you like adults do. There were some downsides to working with kids as an autistic adult. If I got along with a co-worker it was all good but then I would be emotionally drained by the end of the shift. I needed to act like everything was good for the kids and that took a lot of energy. Or occasionally a parent would be difficult, like one time a parent got mad at me for telling them every time their kid bit someone. They told the director I was talking negatively about their child. Reporting a child physically harming another child was protocol, what was I supposed to do?

At the end of the day whether it was good or bad I was exhausted. I didn’t know I was autistic at the time. The reason I was exhausted was because of the noise levels, the kids grabbing at me and interacting with co-workers and parents. I loved the kids but at the end of the day I just wanted to be left alone. And my body was so exhausted I could hardly move when I got home.

So when I had my daughter part of me wondered how I was going to manage work and being a mother. I quit work while I was pregnant because I had a meltdown over something my boss said. Sometimes I regret quitting that job. If I had known that a year later that the director was going to stop working there I would’ve toughen it out. I went back to work when my daughter was 6 months old at an early education center. And it was hard. I was glad to work but I was so tired when I got home and I was sad to miss some of my daughter’s milestones.

And not only was parenting hard while I worked but so was being a wife. There was no energy leftover for my husband. We were getting along slightly better than when our daughter was a newborn. But there was still a lot of fighting when we interacted. At the time we didn’t know that we were both neurodivergent, raising an autistic daughter.

Raising our daughter took a lot of energy so there was a lot of disagreement as to when we would have a second child. It kept getting pushed back and then my health took a turn for the worse in 2018. Once this health problem or that health problem got solved then we could try for another baby. Then it became clear that my illnesses weren’t going away. So the new goal was to get my chronic illnesses under control. Well while I was trying to do that, an autoimmune disease I didn’t know I had was flaring up. So during the pandemic I got diagnosed with Ankylosing Spondylitis. And of course a heart problem started around the same time I had the huge AS flare. But it didn’t get diagnosed until June of this year. The specialized cardiologist I saw said I had autonomic dysfunction.

Before I got diagnosed with autonomic dysfunction my husband and I were contemplating if we should try for another child or adopt. My husband was anxious about me getting pregnant and didn’t like that my ob-gyn said I would be considered high risk pregnancy. He liked the idea of adoption better. I couldn’t decide which I wanted to do. But after the visit to the cardiologist I told my husband, having another child is probably not a good idea? And he responded probably not. And I got upset because I knew at the end of the day he wouldn’t be devastated if we didn’t have another child. When we were dating he said he always wanted one child (he too is the oldest of 3 children). I wanted 4 and he wanted 1 so our compromise was 2 children.

Was it wise of me to marry my partner knowing he didn’t want more than one kid? Was this something we could really compromise on? We had a honest discussion and he knows I resent him for waiting to have a second child. We waited so long it is no longer safe for me to get pregnant. And now with my heart issue I don’t know that we would be allowed to adopt. So for now the most logical thing is to not have a 2nd child. I know I should be grateful that I have a beautiful, healthy girl and I am. But my heart aches for what could have been. My daughter will never have a sibling to grow up with, to confide in when we get on her nerves, or reminisce with when my husband and I are gone.

And who do I blame for this unfortunate turn of events? My husband, my poor health or my late autism diagnosis? Honestly it was probably a combination of all three things. But it’s frustrating that my late autism diagnosis took away another thing. I think if I had been diagnosed sooner I could have managed my health better. Then I could have prevented my health from getting so bad that pregnancy would become unsafe for me. And maybe if my husband wasn’t so hesitant about having another child we could’ve had one before my health got so bad. The most frustrating thing is knowing that being autistic and chronically ill would have people view me as an unfit candidate for being an adoptive mother.

Inner autistic child

I’ve been absent for a little bit due to post-covid symptoms. And then I lost my grandfather to covid-19 at the end of January. I have been in no shape physically or mentally to blog. I’ve wanted to blog but I’ve been in so much pain. And on top of dealing with post-covid, I’m also dealing with my underlying health conditions. So to say I’m a mess would be an understatement.

I might write more about dealing with post-covid symptoms while autistic in the future. But today I’m tired of thinking about that dreadful virus. I want to write a little bit about being autistic and parenting an autistic child. These days it’s very tiring to be a parent whether you’re autistic or not. And another level of difficulty is added when your child is autistic. Don’t get me wrong I love my child and wouldn’t trade her for the world. But it takes extra work to parent an autistic child.

There are some moments of parenting that are healing for my soul. My parents had no idea that I was autistic but they just viewed me as sensitive. And they let me know I needed to toughen up. I was overwhelmed and overstimulated all the time. And I had these big feelings that I had no idea what to do with. Being told to stop crying and being called sensitive didn’t help me. Now I make sure my daughter doesn’t get overwhelmed. I let her stim and make sure she has stim toys nearby. And I give her space if she needs it. And I hold her if she wants to be held. And I let her cry if she needs to cry.

Yesterday she had a very hard day. She hadn’t slept well the night before. And it took extra effort for her to pay attention in class. And she had lunch bunch, that is when a few students get to spend lunch time with the teacher. My daughter is in online school so social interactions can be extra tricky. She wasn’t able to talk as much as she wanted to during lunch bunch. And it didn’t help that this group was mixed, she usually ends up in a all girl group. And her favorite friend wasn’t in lunch bunch this time. And she really wanted to share a joke but then it was time for lunch bunch to end. She couldn’t handle the change so when lunch bunch was over she was very upset. And she had a few minutes until the next class started.

My husband started to lecture her on how you can’t throw a fit if something doesn’t go your way. Then she burst into tears. I knew she just needed to be held. I sat in the rocking chair and said sit with me. She sat in my lap and curled up into a ball and hugged me. I rocked her in the chair and told her it was okay to be upset that things were different. I said maybe next week’s lunch bunch will be better. I held her while she cried. And I let her cry even though she would be late for class. My inner child felt at peace. I was giving my daughter space to cry and I was providing her comfort. This was something I never got as a child. We both just needed to sit in the rocking chair and hug each other. Eventually I helped her get up and logged into class. She needed me nearby while she sat down for her lesson.

Getting my autism diagnosis has helped me be a better parent. Because I thought being overwhelmed and overstimulated was something to just deal with. I didn’t know there was tools to help calm myself down and my daughter. I’m ashamed to say I used to yell at her when I lost my patience and she got to be a handful. It turned out she was just overstimulated when I was wondering why she was more intense then other children. Now that I recognize that she’s autistic I can help her from becoming overwhelmed or help her calm down when she’ already overwhelmed. (Unfortunately I couldn’t get her officially diagnosed because according to the doctor she’s too verbal. Btw autistic children can be very verbal.)

Listening to my inner child has been beneficial to parenting. I remember all the things I desperately needed as a child and provide that for my daughter. If you’re autistic and have an autistic child I recommend that you pause and remember what you needed as a child. You might find that you know exactly how to help your child.

Ankylosing Spondylitis

On Thursday it will be 2 weeks since I’ve been diagnosed with Ankylosing Spondylitis (AS). I’m no stranger to chronic illness I have fibromyalgia, adenomyosis, interstitial cystitis and other conditions. And I didn’t take those diagnoses lightly and wasn’t thrilled about them. Right now I’m going through many feelings from shock to grief but one emotion stands out: rage. Usually I don’t get angry I just stuff it down. But this makes me want to scream and throw stuff.

What is ankylosing spondylitis you ask? Well right now it feels like a death sentence. There is no cure and it’s an arthritis that affects the spine and hips. In severe cases it can cause the spine to fuse together. Goodness I wonder why I would be so mad?

It’s not like I need to be active and keep up with my almost 5 year old. Or had dreams of having a second child. Or hoped to go back to work and avoid ending up on disability. Or wished my back pain would have an easy fix and I could finally feel like a healthy person. I don’t want to think about the chance of ending up in a wheelchair.

I know these things aren’t the worst thing to ever happen to a person but it still hurts. I am no saint but I didn’t do anything to deserve this condition. And I can’t believe how long it took for the doctors to diagnose this condition. My primary doctor had to refer me to another rheumatologist because she didn’t agree with the first one’s assessment that I had nothing rheumatological wrong with me. I could’ve had this condition diagnosed sooner instead of during a pandemic. A pandemic is the worst time to find out you have an incurable disease.

If you want to learn more about ankylosing spondylitis check out this website:

https://spondylitis.org/about-spondylitis/types-of-spondylitis/ankylosing-spondylitis/

Beautiful Child

Sigh. What is it with some neurotypical parents playing martyr when it comes to parenting an autistic child? If you haven’t heard the latest offensive parenting article came from Popsugar; a mom compares parenting her autistic son to a job no one wants.

Nicole feels that if her role was put in the paper or posted online, it wouldn’t get many interested candidates. “If this job was advertised, I couldn’t see many people applying,” she said.
https://www.popsugar.com/family/why-caring-for-child-with-special-needs-is-hard-47074219

Umm hello? Can she not see how offensive that is? One day her son will be able to look up this article and see what his mother really thinks about him. I would be devastated if either of my parents wrote this about me. Granted they didn’t know I had autism while I was growing up but they knew I was different. And yes I was difficult but there are some things you do not say about your child online!

I could keep going about what was wrong with this article but I need to keep calm as I’ve been dealing with heart problems recently. So I am going to spend time to write about how awesome it is to parent an autistic child. See I believe all children are gifts from God, yes even autistic children. And I know not everyone is religious or even believes in God (which is totally okay and cool too). All children have intrinsic worth. No child is worth more or less because at the end of the day they are all human. And all humans have worth. Once again ALL children have intrinsic worth.

Now I’ll admit I’m a little biased and think I have the most wonderful girl in the whole world but my point still stands. All children have intrinsic worth. And I fell in love with my daughter before she was even born. When I first saw her after she was born my heart exploded with joy and worry (wait, if you’re out here I can’t protect you from everything).

I had to take a break from blogging and go pick up my daughter from preschool. As soon as we pulled into the driveway she says, “Mom you’re the best!” I love her so much because she’s mine. Sure she can have rough days but so do I, that’s part of being human. She’s sweet, so goofy, creative and intelligent. Her current special interests include cats and words. She wants to be a scientist and study everything. She also gives the best hugs!

Image description: My daughter standing in front of a Christmas tree

I’m also in awe of her because she’s so kind and compassionate. Unfortunately since 2018 I’ve dealt with serious health issues. She’s become very aware of the fact that mommy doesn’t have energy a lot of days. She has adapted to us finding quieter ways to play. Thank goodness I have my husband so he can play more active games with her. But I’m convinced she’s so compassionate because she’s neurodivergent. She has some struggles due to sensory processing disorder and it makes her better able to empathize with others. Even if all her wonderful traits didn’t outweigh the difficult days I would still love her. And parenting her is not a burden. Sure it’s not easy but parenting isn’t easy for anyone. Parenting her is a privilege. Watching her develop into her own person is a privilege. Watching how resilient she is is a privilege. I love who she is but mostly I love her because she’s my beautiful child. My beautiful autistic child who doesn’t need to hide who she is because I love her just as she is.

Now what

The other day another doctor disappointed me. I’ve had my fair share of medical doctors not listen or not properly treat me or lie to me. So I’m getting used to disappointment in doctors. But life changed things up and this time it was the psychologist evaluating my daughter who disappointed me. My husband and I went into the office Monday evening to hear the results of the autism evaluation.

My daughter is preschool age and had already been diagnosed with sensory processing disorder and low muscle tone. I was expecting her to be diagnosed ASD level 1 like me. That didn’t happen. According to the psychologist she’s very verbal and has a strong vocabulary so she can’t be autistic. And she didn’t stim in front of the psychologist and the examiner so that means ‘she can control that behavior’ and it’s not stimming but a behavioral issue! She did get diagnosed with unknown anxiety disorder (by the way about 40% of autistic children have anxiety disorders) and developmental coordination disorder.

I was so frustrated when the psychologist said my daughter uses hand gestures and that autistic don’t use gestures. I use hand gestures and I am autistic! And back to the verbal thing there are autistic people who are very verbal, I’m not one of them but they do exist. And I have a strong vocabulary and am autistic. Gasp! And I don’t stim all the time and I can control my stimming but it’s exhausting. My daughter’s stims are noticeable only when she’s really distressed. She wasn’t distressed in the quiet room where evaluation took place. Her subtle stims include chewing her lips and humming. I have no idea if the evaluators knew to look for those things.

And I’m mad at myself for having no spoons left to process what the psychologist told me and to advocate for my daughter. It took so much energy to mask my anger and frustration but according to my husband it was obvious I was upset. The psychologist even asked if I was okay. At that point my daughter walks away from the toy blocks and stands next to me, she doesn’t look at me, she just says Mama. I tell her I’m okay and she walks back over to the blocks. My sweet girl was comforting me in her own way. And thankfully I didn’t blow up and say something rude to the psychologist.

I was so upset and wanted to point out to the doctor the quiet, vocal stimming my daughter was currently doing and the subtle hand flapping right before we left the office. My daughter spent lots of time setting up a scene but very little time playing with the toy person while the psychologist was going over the evaluation results. I just wanted to scream in frustration because I felt she did not see my daughter at all. She even talked about how she briefly considered combative disorder (the up to date term is oppositional defiant disorder). But my daughter’s violent outburst weren’t frequent enough to qualify for that diagnosis. Part of me wondered if she considered that diagnosis only because my daughter is multi-racial. And I wish I had time to go over the history of racism and sexism in mental health.

And I could go on about every thing the psychologist was wrong about but that won’t help my daughter. I’m now even more driven to share about how autism can look different in girls. And I wish I could go do research and develop a test for how to identify different presentations of autism. I’m not sure exactly what the next steps I need to take to help my daughter. All I know is I’m not going to give up.

Working and worries

I’m excited to announce that I’ve started doing reviews for onlinebookclub.org. My reviews have only been published on the volunteer review forums but I’m hope in a couple months I’ll be good enough to be published in the official reviews section. I don’t make much money it’s just a nice way to make extra pocket money. For me it’s about getting a chance to get paid to read and build up my professional writing experiences. I’m pleased with how my first paid reviewed turned out. I was worried after my first test review I wouldn’t get to do another review. My first review was done under the stress of dealing with the aftermath of my home flooding twice in one weekend. And I felt it wasn’t my best work. I was given lots of notes on how to improve in the future. And amazingly was given a chance to do another review! I’m looking forward to doing my 3rd review. My second review is on the book The Cult Next Door: A Manhattan Memoir by Elizabeth R. Burchard and Judith L. Carlone. You can read it here: https://forums.onlinebookclub.org/viewtopic.php?f=24&t=120659

Also the online book club has a pretty cool community of online reviewers aka book lovers. I’m trying to get comfortable to write in the community forums but for some reason I get so anxious about it. It sounds silly but I’m afraid of making social mistakes since I’m bad at missing social cues online (I’m not great at doing it in person either)! Blogging does give me a little bit of anxiety but I have a chance to write a draft of my post and edit it. I still have a hard time getting over my desire of everyone liking me.

Hopefully I can get over the need to please people. I need to toughen up a bit because I am now searching for freelance work. And there’s always a chance of rejection. I’m going to stay positive and keep moving onward even if I get some rejections. I’m excited that I’ve finally decided to pursue freelance writing and can’t wait for this next phase of my life! And I’m incredibly grateful for my husband because without him I wouldn’t have the ability to pursue this career dream of mines.

***

In the parenting aspect of my life I do have lots of worries. My daughter has sensory processing disorder and we are now on the wait list for her to get evaluated for autism at a local children’s hospital. I’m excited but the downside is we have to wait 4-6 months until they will see us. On the bright side we will get seen right before she starts kindergarten. I’m just worried I don’t have the proper tools to help her deal with her sensory issues and anxieties. I remember the things I dealt with as a child and how bad my parents made me feel. To be fair they didn’t know I was autistic and they were too young to have kids. But it still doesn’t undo the damage they did to my self-esteem and my ability to calm myself in a healthy way. My daughter has been having a hard time adjusting to the move. She has been going from feeling excited about the new features of our home to asking if we can move back to our old apartment. It’s emotionally painful for me to see her so sad so I hope my support is enough. I try to keep my facial expression neutral but I think she picks up the pain I feel for her.

Today my daughter is on her first field trip. The students at her school our going to a cider mill to learn how apple cider is made. She just couldn’t stop talking about it last night. I can’t wait to hear about her trip. I do feel guilt for not having the ability to be a chaperone for this field trip. But then after she left I was dealing with crippling stomach pain that left me barely able to stand. It wouldn’t be fair for me to go and basically have the teachers and other parents babysit me because I can barely move. My kid did seem a little sad I couldn’t go on the trip like some of the other parents. I’m hoping the next field trip I’ll have my health issues under control and can chaperon.

If you’re an autistic adult how do you deal with the anxiety of searching for a new job? How do you deal with the anxieties of starting a new job and working with new people?

Autistic and non-autistic parents how do you deal with feelings of failing or disappointing your kid? How do you handle those anxieties?

That’s all for today. I wish you all a good day!

CHAOS

Editor’s Note: I started writing this post on September 11th to give an update on my life and explain my absence on the blog. Of course I never got past the first paragraph. I’m giving a current update on October 15th. More than a month after I started this post. The first part of the post will be written in blue. The rest of the update will be written in black.

To say life has been chaotic would be an understatement. Between August 30th and August 31st our home flooded twice. We live in a humble two bedroom apartment. The first time we were told by maintenance that a rag from a previous tenant was clogging the pipes. The second time we were accused of flushing wipes but no evidence of wipes in the pipes was presented. That’s because we know NOT to flush wipes, we even drilled in my daughter’s head to never flush wipes. So we don’t know what happened. And we live in anxiety waiting for the toilet and pipes to just start flooding our home. And the first time the our home flooded management called for carpet cleaners. The second time it flooded we had to beg for carpet cleaners. And finally after a week and a half we got carpet cleaners! Our bathroom, bedroom and hallway had stunk! And everyday I had to open the patio doors to air our home. I was so worried about mold developing.

Current Update

It’s more than a month since I’ve started to write this post. I’m finally starting to get my life in order or at least attempting to get it in order. We moved for our health and our sanity’s sake. We had to rush to find an affordable place. We found an older duplex and it has more space and we now have an office! I’m absolutely thrilled about that so I now have a space to work on my blog and other projects! Moving was a headache. While the new place is nice we did come across some problems like a leaky toilet and leaky pipes in the basement. It was hard not to get angry since we left our last place due to water issues. Those problems are fixed and so far this place seems like it will be a good home. Oh and mold did develop sometime after our home flooded. But not in the place I feared, apparently sometime after the flood a leak from the upstairs neighbors happened above our closet. We discovered it as we were moving out. Like I said, despite a couple of small problems our new home seems to be much better and mold free. Hopefully we don’t have to move again anytime soon!

My health is not in the best shape. I did have an urgent procedure done the Tuesday before we moved. And I just needed some medicine to fix a problem. A biopsy was done and everything came back clear. I have a follow-up appointment so hopefully my gastroenterologist and I can figure out how to manage my digestive system. I have a long history of having stomach issues and it’s the worst. I have other health issues and issues with my digestive system is incredibly emotionally draining. Over the years the list of foods I can eat gets shorter and shorter. And I try different medicines and get put through procedures. And there’s always the false hope things will settle down and get better! My other health problems excluding my bladder disease, are easier to deal with. For example I know what will help my back pain even though having to get shots in my back is awful. My rheumatologist and I are trying to figure out the right dose of gabapentin to manage my Fibromyalgia but those symptoms are less embarrassing compared to my digestive system symptoms.

Anyways enough about my health. I’m planning to focus more on blogging! And I hope to get started on my list of books about autism. And I’m looking to do some freelance writing. I’ve had a rough few months but I’m not going to keep that from my goals. I hope everyone is doing well. And if not I hope things will start to look up for you! ❤

Stress

I’ve had a stressful and hectic summer. I feel so frazzled and am trying to get back into some sort of routine. I do best on a routine. Having a routine keeps me grounded. I’m trying to not let things upset me but it’s hard when you feel like life is throwing a lot of lemons. And what’s that saying if life gives you lemons make lemonade. Well I can’t even drink lemonade because it flares up my bladder disease! I’m still trying to get my illness under control. Anyways my autistic brain is just freaking out and going a million miles an hour. I’m telling myself to calm down but then my brain has to go over everything wrong with life And the biggest thing on my mind is the state of the country I live in, the U.S.

Yes I’m aware things could be worse but right now things are going down hill. And it’s spiking up my anxiety! Any autistic people out there who also get way to anxious over current political climate of your country? The weekend of August the 3rd there were two mass shootings in the U.S. Both shootings were horrific but the one in El Paso terrified me. The shooter in El Paso was targeting immigrants specifically Mexican immigrants. As a U.S. born citizen of Mexican immigrant parents I felt ill when I heard the shooters motive. I am now afraid of being targeted by a shooter when I go out in public. Or being a victim of any sort of hate crime. I’ve had people say ugly things to me because I’m Mexican American and I’ve dealt with racism from schools to store employees. But I never worried about being physically attacked until recently. I’m scared for my daughter also. She’s multi-racial and has a multi-ethnic background. How will people treat her as she gets older?

Anyways I’m trying not to let the stress and fear get to me. There are things I need to do like take care of my daughter and home. And I really want to focus on blogging and I am trying to get a job as a book reviewer and work from home. If I got the job I wouldn’t make very much money but it would be nice to earn money again. And I want to do something about the lack of gun control in this country. I do plan on writing a more detailed post about the shootings in early August. Yes I know it has nothing to do with autism but I feel the need to do what I can about making a change in the U.S. Yeah I know there’s a chance my little post could make a difference but I should at least try to make positive change. If I let stress get to me then I freeze.

I can’t let stress and fear immobilize me. Years ago I learned a lesson about life from a co-worker. Another co-worker had just experienced something horrific. And I told my co-worker if I had gone through the same thing I don’t think I would be able to go on with life. My co-worker told me no matter what a person goes through, life goes on and you have to get up the next day and keep going. And she wasn’t saying it to be mean, she was just telling me about the reality of life. I said, yeah I guess you’re right. Then I told her, it’s so sad. And she said, yes it is. And we talked a little more and I can’t remember the rest of the conversation. But I remember realizing it’s okay to be sad but you can’t give up on life just because something terrible happened. And afterwards life sent plenty of opportunities for me to experience the pain and learning how to move on. To be honest the past 20 almost 21 months have really tested me. It seems to be one crisis after another. And I’m just trying to stay afloat. And hopefully one day I’ll be able to ride the waves of life and be okay.

Below the Surface

Last time I blogged I said I was going to try to blog once a week. Then life happened. So I apologize for not keeping up I’m going to do better this time. I had developed some problems with dizziness. And my dizziness finally went away last Friday. And then I spent this week recovering from throwing a party last Saturday for my daughter’s and my birthday. Our birthdays are 2 weeks apart and I was too tired this year to plan two celebrations. I asked my daughter if we could combine our birthday celebrations and she thought it was the best idea ever! We celebrated her 4th birthday and my 30th birthday. It was fun but exhausting. Both my daughter and I dealt with sensory overload and it took us awhile to recover from all the excitement. Who am I kidding we’re both still recovering! It was worth it though and my daughter had fun.

Sensory overload can be something that a lot of autistic people deal with. But today I want to discuss being autistic and dealing with anger. And specifically I’m going to discuss my experience and hope to hear from you. Anger is a tricky emotion for me and that has to do with my childhood. As a child I was physically, verbally and emotionally abused by my parents. (A side note my parents are much better now. They were basically children when they had me and didn’t know what they were doing. Being young doesn’t excuse the way they treated me but it does explain why they mistreated me. Since then they have both grown up a lot and are different people now.) I have a lot of anger and I stuff it down and it’s always simmering below the surface. If I showed anger when I was growing up I would be yelled at and sometimes even hit. I still fear anger.

Because of this fear I stuff my anger in and then I either implode or explode from anger. Of course once I release my anger it’s like hitting reset. I usually feel shame for expressing my anger after going into a fit of rage. Even though I feel ashamed I feel like my body feels better it’s like my body really needed me to get rid of the anger. Then I have room to stuff more anger in. I’ve recently realized that I need to end this vicious cycle. I decided recently I was going to get angry about the little things and things I cannot control. I felt like this was a good reasonable plan.

Well to my surprise the autism specialist I see, didn’t quite agree! She said I didn’t get angry enough and talked about expressing anger in a healthy way. She gave me a homework assignment and told me to get coffee with a friend and vent about one thing. Currently the only person I have to talk about my anger is my husband. She said I need to have someone, and not just my husband, to vent my frustrations to. I was just very surprised at what she had suggested. I’ve always got the message that anger is bad and shouldn’t been shown. She acknowledged how my childhood played a role in this and how unfortunately society tells women not to show anger. This idea that I’m allowed to show anger is scary for me. I hate dealing with anger and don’t ever want to deal with conflict. I’m scared another person will get angry with me. So the assignment she gave me seemed reasonable. It wasn’t like she was telling me to confront someone I’ve been angry with for a long time or to vent about the major events going on in my life. She said just vent about something small.

Hopefully this assignment goes well. The concept of me expressing anger intentionally in any form seems odd. But when I stop to think about it, being intentional about expressing anger makes sense. Of course expressing anger should be done in a calm, respectful way as opposed to just losing it and saying hurtful things to another person. The other unhealthy way I would deal with anger would be by hurting myself or shutting down completely and/or avoiding people. I think subconsciously I had this idea that if I ignored my anger it would go away. But it never did; it just kept simmering below the surface.

I’m going to share a current irritation with you. Kids are outside running around and screaming in the apartment complex parking lot. And I’m really worried they are going to wake up my sleeping child. My daughter has slept terribly all week, today is the first day we’ve gotten her down to bed at a decent hour. And also I really wish we could afford to move out of our apartment and move into a house. What are you currently irritated by or angry about? And do you struggle with feeling angry?

ER

So it’s been awhile since I’ve blogged. The past couple months have been hectic. Quick summay of my summer so far. June 1st I drove to California with family to see my very sick grandfather. While in California I sustained a concussion. After our trip in California I was supposed to have surgery to remove my gallbladder. Well my surgeon wanted to postpone that since I had a concussion. So I had to wait to heal from my concussion and couldn’t get surgery until the end of June! Surgery itself went well. I had some difficulties a few days post-surgery because my body can never keep things simple. And I turned 30 yesterday! I have a hard time handling major stressors so blogging kind of went out the window.

Now I’m baaaack! I’m going to ease myself back into blogging and will try to blog at least once a week. As an autistic person I’m very clumsy and always have been. And honestly I can’t believe how my clumsiness wasn’t a red flag when I was younger. Here’s a fun story about my clumsiness. My husband, daughter and I were leaving the hotel so we could go to my grandparents for a family dinner. For our trip we had rented a van and I’m used to my smaller Kizashi Suzuki. I climb into the van and misjudge how far the door is and hit the top of my head on the door. The shock of the pain caused me to lose my balance and I fell over backwards and fell onto the parking lot. I landed on my back and hit the back of my head.

I see a white light and then I hear my husband shouting my name. The only reason I didn’t pass out was because I heard my husbands voice. My husband helps me up and I realize what happened. I scared my husband because he heard me scream as I hit my head on the door. But he didn’t see bump my head and so he thought I screamed as I was falling. It all happened so fast. He helped me into the van since there was no where else for me to sit. I realized I had lost one of my shoes and my husband found it in the van! I start crying because the pain on top of my head is worse than the pain on the back. I tell him to make sure I’m not bleeding because I feel a stabbing pain on the top of my head. Thankfully there’s no blood. And my poor daughter is in her car seat screaming and crying because she just witness me get seriously injured.

My husband has the sense to go run and grab Tylenol from our hotel room. He gives me Tylenol. I try to decide if I’m okay to go to the family dinner or just rest in our hotel. Then I’m crying saying how I need to go the ER. Because the stabbing pain in my head won’t go away! My husband finds the closest ER and takes me there.

Even though I’m originally from California I’m basically a Midwestern girl since I’ve lived in the Midwest since I was 2. I didn’t think about the ER experience being different (unfortunately due to my health I’ve been to plenty of ERs in Kansas) since I was in an excruciating amount of pain. Luckily security was very kind which would make up for the lack of compassion the nurses showed. Security saw my husband helping me into the hospital. And I was in so much pain and dizzy and could barely stand straight. The officer got me a wheelchair and said he would stay in line with me while my husband went and parked the car. The line was long to check in (first difference I noticed!) My husband was back before the nurse checked me in. I barely remember what my husband said or did or what the first part of the check in process was like. My husband was given paperwork to fill out on my behalf. We wait in the lobby for 40ish minutes waiting to be called back. My kid is fidgeting and wants to sit with me in my wheelchair. My husband is stressed and I’m wondering what’s taking so long. Finally I remember the paperwork the nurse gave my husband. I ask, weren’t you supposed to return the paperwork to the nurse? He says he doesn’t think so, but he goes ahead and asks.

It turns out they were waiting for him to return the paperwork so they could call me back. At the hospital I go to in Kansas, you just fill out a card stating why you’re in the ER and you’re put on a list to be called back. There is no waiting for you to fill out a book. They get your information in triage! I get called back and am seen by a nurse and physician’s assistant. The PA was so unprofessional and chatting with the nurse like they’re at happy hour. They didn’t seem too concerned that I was in a lot of pain and super dizzy. My daughter couldn’t stay still. She was twirling right next to me and almost fell and hit the wall. The PA was like be careful or you’ll get a concussion too. Her and the nurse started cracking up and them laughing at my child really ticked me off! A CT scan was ordered to be on the safe side. The radiologist technician who took me to get my scan was nice but was very new at his job. I had to get re positioned by, who I assumed was, the radiologist since the tech placed my head the wrong way. And then the technician realized I had earrings and told me to remove them. So I had to lay down again and I hoped the technician put my head back in the right spot. He was really nice afterwards though and gave me a warm blanket while I waited in the waiting room. In Kansas if a CT scan was going to be ordered then I would’ve been put in one of the little rooms in the ER. Then I would’ve been laying down in a bed waiting for my CT results! Maybe I’ve just been spoiled by the Kansas ER format.

Finally a nurse came to get me and told me there was no room in the back for a wheel chair. She made me get up and put my wheel chair away. Which I didn’t understand because we went back to the same hallway where I first talked to the PA. I still had a hard time standing and was still dizzy. My husband had to help me down the hallway. We walked very slowly behind the nurse so I wouldn’t fall down. She turns around and says, Really, and sighs very loudly. We get to the room and finally the PA comes in and says everything looks fine. She tells me what symptoms to look out for, in case things get worse. I’m trying to focus but every time I follow her movement my eyes get blurry. She says I’m ready to be discharged and leaves the room. I finally process what she says and tell my husband that my eye sight is blurry if I look at someone moving. So my husband tells the nurse when she comes by and asks her if she can tell the PA. She says well your CT scan came back normal. My husband and I realize she’s not going to get the PA. We’re discharged. And I think my husband had to go hunt down a wheelchair. I can’t remember if he was successful in finding me a chair. I do remember a cleaning lady was very nice and opened the door for us so my husband could push me out the door or maybe he just helped me walk out the door. My memories are fuzzy at this point. But the only nice people were the non medical staff with the exception of the technician.

My concussion was such a lovely souvenir (sarcasm). I hate going to the ER but unfortunately I end up going a lot due to my health issues. And boy did I miss the ER near my home! Here’s to hoping the rest of my year is ER free! And dare I wish, for the rest of my life I never see the inside of another ER.

Do you have any ER horror stories? How to you cope with being in the ER? This reminds me, I do have another ER horror story from when I lived in Salina, KS. I’ll spare you the details of that story!