Anyone that knows me, knows I am caught between the need for routine and the need for complete openness. Some things I am extremely open about-usually dealing with people’s opinions or even favorite food items because there is so much variety in the world and I want to valid, honor and support each one that doesn’t harm myself or another. However, despite what it may look like on the surface, there are several things that are part of my “routine” that I am so stuck in. I wanted to talk about this because originally–I didn’t think I was so stuck in a routine until I noticed I was getting upset for no reason when plans changed, when something wasn’t set up the way I like it and when I thought I was stepping outside the box but actually forming my own triangle square in my own world.
One of the first things to note about routine is its definition: routine means no change. Changing the routine of an autistic person can be extremely threatneing to their neurological health. Yes-simply put their brain health. How they keep processing/act/ functioning. My son (who is officially diagnosed) has a routine about going to the zoo. We see certain animals in a certain order, take certain walking paths. If we went to the zoo and went a different way–he notices the change. The one time we did this without talking to him prior–he looked back at me worried and complained. It looks like a tantrum forming but it was a worried face not a sad face. If I had not actknowledged him, addressed his concern and reassured him, he would have continued to escalate getting upset. Some times he has a major meltdown. He does also continue to massively chew on his jacket sleeve. My husband and I see the change because we are aware of our child’s needs.But others may not see the change in going in near the monkeys versus going in near the Koalas and Australian birds is huge for our son.
I have a similar need in my routine. But it looks different. This is why all autistic people look different and its something all people should consider when getting to know an autistic person. While I am okay going to the monkey entrance or the Koala entrance–I have a specific animal I want to see: A Red Panda. And if I don’t see that animal, I get frustrated because it is my special interest. Not only it is a rare animal and endangered, but it is a calming animal to me and reflects my identity. So not seeing this animal is comparable to leaving a little piece of me behind. It provides me a safe image of my identity. And while my son gets upset by the visual change of routine. I get upset by the spatial change. In addition if we go into a section of an animal I don’t like (i’m not the greatest fan of apes) and DO NOT see my favorite –then I will be in a bad mood by accident the rest of the night. My brain spends half the evening processing why we didn’t go, why that’s okay and when can we go back to see the Red Panda.
While people who are autistic thrive on routine–it is not always for reasons you think. If you told me I must eat the same thing every day, I’d probably cry. However, there are autistic and ADHD kids who only eat one food every day for years because they want that routine. It’s safe. It’s fun. Why change? But if you told me this-I get upset because I’m being forced into a block I know I don’t fit into or that there are alternative options. Contrastingly–if you told me I can only eat for 6 hours a day, I jump at the chance to participate because it allows for flexibility in a controlled environment (this is called intermittent fasting in case you’re interested.) I am safe, I can be myself. This is something autistic adults and children are speaking out is all they want. To be themselves and to know that is okay.
Think about your routines. Maybe they are not where you think. And maybe supporting those who are autistic, ADHD or even OCD involve figuring out the whys and hows of their routines, not just the whats and filling in the blanks.
(sorry for the posting errors-new system…i have fixed this…)
At this time of this writing, it is 00:40
It is after midnight and I know full well that in less than 6 hours I will need to get up, be ready for work and get my kiddo ready for school. And while staying up late has been a staple in my life–it was not until recently I looked up into the relationship between sleep, ADHD and autism.
Just a general search on google brought up an article on ADHD and sleeplessness. (Click Here ) Now grant it its one article, but After reading it, I cannot tell you how many explanations are directly applicable to my situation. I can also see how the science fits because of my brain neurology and body chemistry.
First: GETTING TO THE BED
My brain is still going several minutes after I had to lay myself down for the night. It is a struggle and I have to tell myself “GO TO BED” or I have to be almost to the point of nodding off. It gets better when I have a schedule and a morning commitment (so during the week) because I know I have to go before I’m actually tired. But if I don’t have somewhere to be– I go to bed probably after 1am on a regular basis.
Second: SLEEPING ENVIRONMENT
It took me several years to admit and enforce a quiet, dark, no electronic in use sleep environment. I still have a problem when I get stuck playing a game. And several times as a kid I had to play a tap player, CD player or as an adult set a timer to paly music to help focus me to sleep. Right now I do have several black out masks, including one that links to music. If I am not 100% completely comfortable, I cannot sleep. So temperature has to be lower, no socks unless absolutely necessary and i have officially “stolen” my son’s weighted blanket on top of my normal comforter. I also LOVE a dog sleeping on my bed, so i make sure I’m cuddled up next to my puppy-dog. Before doing this–I realized i would toss/turn. If the temperature is not right I cannot sleep at all. I’m trying to remember what I was like as a kid, but my mom said I was sleeping in large beds because I move really young. Me getting good quality sleep is rare. What I love best is that my husband has supported this and understands that a lot of health problems can improve from just good overall sleep.
Caffeine hasn’t always been a problem for me but now it is. I noticed closer to bedtime if I drink high caffeine, the harder I can shut down. Watching movies that are psychological thrillers or horror are also a problem because my brain is still processing them hours after I see them. Its best me just watching fun TV shows, shows I already understand (like series) or a fun movie or calm movie. Dreams can be triggered with anything too emotional or too trigger oriented so I try to watch for those too.
Fourth: WAKING UP
Getting up is HARD for me. I’m talking 3-4 alarms (bug my husband) sleepy half-awake for at least an hour before I’m really going.
I also do NOT like to be awakened early suddenly. I can be very unpolite that early in the morning. I have even told family and friends to have minimal conversations and nothing serious before 9am due to this situation. I even told my mom “no talking to me before xx time” when i lived at home and it made life a lot better.
So learning about ADHD/autism and PCOS in the last 5 years has really showed me where I fit in. The issues i have with staying awake, feeling like I don’t get enough sleep and having trouble waking up despite 10 hours of sleep are all related to these health issues that have been with me my whole life. And while definition does not change my reality– it does help me search for a community more supportive of my needs (up late all the time) and to search for more efficient help.
Have you ever thought about your sleeping habits? Comment below! who knows-maybe you’ll get some insight on a sleeping habit you’ve been trying to work on! 🙂 zzz…z…zzz..
So in my last blog, I talked about my personal struggles about possibly being autistic along with my son. Self-awareness is beautiful and so I wanted to talk about what it has been like discovering this part of my identity.
First– I have found people like me. (lol I can now sing the sound of my people–ARROOO! ARROOO!) They have sensory food issues (i was not kidding how horribly i hate avocados/mushrooms and mustard), qerky fun things about their personalities, dye their hair or do their makeup in the most amazing colors ON PURPOSE (not for style but stimming) and have similar struggles like when I watch movies where I get stuck in the movie world and it’s hard to transitions out without acting like the movie. And other autistics don’t mind if you emotionally need a break or if you’re going through a burnout — they get it. No explanation needed. And no one is “putting on face.” or “playing a game.” We really don’t know how. Neurologically speaking. Most of wear our hearts on our sleeve or if we do hide, we get really good at it. And even if by some review of sorts I’m NOT at least neurodivergent (not sure how I feel if that were to happen…considering things) — everyone should have an autistic friend in their life. Support and love them and learn to see a little of their world. As Agony Autie says (WATCH HER VIDEOS!) — it’s a privilege.
Identifying as autistic has also helped me understand some very major aspects about myself as a child as to why I just never felt like I ever fit in. Oh, wait, not fitting in, that’s a qualifier without me even realizing it. I am general an extroverted social person. But I can only slightly read people and NEVER know the right response. Or don’t have the time to process things. Check more on the autistic list.
Item Two: my friend count was low. Not bad. I had really great friends that many I am still friends with today. But no true one BEST FRIEND. When my mom got sick and I had to find a friend to take care of me because my dad would probably not be able to–I was scared because I had no 1 person (you got two choices anyways, but still.) And frankly– a lot of them I rarely hung out with outside of the environment I knew them in.Band Geeks (loud and proud) but never got along with band people. Was in honors but did not mesh with the popular crowd. I did girl scouts which I know struggled with keeping friends there because some girls used me (don’t worry I have a friend I live near I am grateful–but she’s half church half scouts so I don’t count that lol.)
Three (which will lead into the next part): I analyze and process SEVERAL THINGS A DAY. I am the truest sense of the word Curious. I like learning, reading or getting into the details. There were many times i thought to myself or my own mother said “people don’t think about this all the time, do they?” As an adult I have said this WAY more often about the simplest of things in which I revealed to my therapist who noted her head with that expression “Oh, NOW I see what you mean…” They usually get kicked into gear because of something I see or hear.
Lastly I am so excited to travel thru adulthood knowing my qerkiness was not just a phase. Remember me mentioning about having eye contact trouble? And expressive language issues? — I STILL struggle with those. I could never figure out why. A neurotypical person should be able to practice & get better as they work through something. But I didn’t. And i know friends & co-workers hardly have noticed. I just thought they were bad habits or me with just bad grammar. But then i realized I communicate better using things other than language. (I felt like music filled up your whole body vs. speech and therefore auditory because the things that mattered..oh wait, sensory stuff again…sorry 😛 .) I excelled at being in school. Task-oriented functions are my speciality. I’m probably an expert on data entry (patterns). Hey-I even tried telling a guy I like him by saying ” you have to listen to this song-because it will tell you how we should feel about each other…” Yep. That was me. And I wasn’t 8. I was 18.
So i hope i haven’t bored anyone. Or scared (definitely something you do not need to be. ) Just trying to be honest. I have a habit of being too honest before. Oops..
If 5 years ago you would have told me I was going to be writing what i’m about to say–i would have looked at you with the utmost confusion. 5 years ago I knew nothing about kids, about development and speech milestones or about sensory issues or …Autism.
But I’m tired of hiding behind hushed words. I’m tired of people telling me “my kid is fine” until he falls off the 5yo playground equipment because the toddler stuff doesn’t stimulate him enough. I’m tired of wondering where his sensitivities may have come from (so I can understand them) while I get nauseous around avocados and scrap off each topping of a pizza just as he does. Yes–I feel my son may be autistic and that I may be to. And yes-I’m seeing a therapist as is Austin (several in fact) to figure out if this is it or something similar on the neurodivergent spectrum. But let’s go back a little, shall we? Autism is not “just” those things.
It all started with a book Nuerotribes by Steven Silverman. I wrote about it here. My mind was turned on to how people could be so negative to those who are just “different” and the history of something I didn’t see as weird or diseased or needing to be fixed. I grew up in a house where all mental processing was accepted. My dad was bipolar and had infarct dementia along with his diabetes/Parkinson’s. My mom was a grade school teacher and was trying to escape her bad self-esteem issues alongside parenting really 3 kids. (i’ll keep where that came from as private as possible.) I grew up liking classic music, never seeing a major horror film or concert and protected by a parent at school who knew how to address my every need in learning. I made it to GATE despite almost not qualifying for language. That being said — I’m pretty geeky and nerdy and have been My whole life (not sole descriptions of autism btw.)
But then I saw a video by Agony Autie about being autistic. And another. And more videos by Neurodivergent rebel And learned an old friend from church had an autistic daughter. I learned autism isn’t a disease that needs curing, but a different way of communicating and thinking. I learned about neurodiversity (something I LOVE). I learned that we need to provide more support for the autistic community and just not drop them off in adulthood to fend for themselves or criticize their behavior. Then all these memories and connections to my childhood came flooding back. Something I had been trying to reach for a very long time since i have a hard memory block for what happened before my mom got sick when i was 12. I found pictures like this where I see nothing but a mirror image of what my son asked for the other night at the table.
See me?? Hands over my ears? Yep–Austin begs me to hold his ears and head like this when he has had too much. Occasionally when he’s trying to process a new noise.
So you’re probably thinking “you’re crazy Sara.” “you’re not autistic.” “Don’t worry you’ll be fine.”
Well first, I am fine. There’s nothing wrong with me. Second –I’m not crazy. There’s A LOT of things i cover up (technical term “masking.”)
1) I actually do have a problem with eye contact. I remember doing speeches in 4th grade and it was something I always missed (as well as talking too fast.) I learned to mask really young (typical for girls) and remember being told eye contact is super important so I forced myself to do it. It requires a lot of energy…but i’ve been doing masking so long I don’t even know if I can turn it off. What it feels like? – Like I’m staring. Even if it is for a couple seconds, I feel like I have stared into someone’s soul. And if I can’t pull away– i’m sucked in staring. not my fault I just haven’t satisfied my curiosity and thoughts about what’s going on with that person.
2) Transitions are SUPER BAD for me. I mean extremely super. Especially sudden change or if I have established myself in a good place (I.e. a Disney Cruise). Or if my routine (or what I think my routine is) gets adjusted too much. I sit and stew on exact words said and i go into a downward spiral of depression and anxiety. I’ve already been pseudo-diagnosized with Adjustment Disorder and possible PTSD. People that know me know i’ve been through a lot in my life before I was even 30.
3) I prefer to use music to express emotions. Blaring it so loud I can tune out the world. I sink into the notes and I don’t even register what or who is around me.
4) While I have PCOS (comorbidity occurs a lot with autistic, especially things related to healthy gut) which provides me with excess body hair and limited head hair– in college i plucked out 2 inches of hair on my scalp. Don’t. Believe me?-see my first passport photo. Why?-Because I didn’t want “fly aways” and I could see them on EVERYONE’s hair. I can still picture it now sitting in a dorm building meeting looking at peoples hair.
5) I fidget. More than I realize. I originally thought it was just habit. But when I’m dealing with stressful stuff–i click pens, spin fidget spinners, and tap my fingers a lot. Today I pinched my fingers together. It’s a stimming technique. And I guess so was my dancing, singing, music playing. Today I bounced up and down on the curb at Disneyland because the parade had just come thru and I was trying to watch my son thru the whole thing.
4) It is very likely I have expressive language issues. When I was in grade school I had grammar/spelling issues. I had trouble catching up to my thoughts racing through my head. I also titled my head when learning how to write handwriting. I do some of this still. Austin likely has this too… He also has clear speech delays, doesn’t express things that are personal (like “mine” or “i like”) and lacks some major (beyond normal) focusing abilities.
Don’t feel pity on me. This is a new experience and I’m learning a lot of things I’m very happy about like why I would get crying upset but not a really anxiety attack. It’s because my cooling skills were gone and I had “lost all my spoons.” And I have talked to my therapist who while noticed I was talkative and social could see why I may have dipped my toes in the rainbow you see below. I could go thru all the categories and show you where myself and Austin struggle with things. But that’s a whole other blog post. 🙂
So there. I have put it all for all to see/hear. Some may not be surprised. Others will criticize. But I’m getting the help I need and I am 150% and more here for my son. 🥰
Happy New Year! Welcome to 2019.
As the New Year begins–I thought I would “muse” about the to come. I know, it probably will consider better eating, being more present with my child and family and trying to become more focused on my priorities and values.
But I do that every year. Just like everyone else, I try to better myself, to focus on things that more me up the “human later” (if you can say there is one.) I’ve decided that 2019 needs to be different. It needs to take out the expected and pull in the fun, silly, happy go lucky feeling that we all wish upon our children. Or ourselves.
So instead of focusing so hard on a diet that is near impossible without planning and thinking–I am going to work at remembering why i enjoy eating the healthier foods. Trust me–not eating bread and things that way my gut down helps me feel better. Getting a big bag of cooked veggies is tasty and flavorful. And the colors i try to eat, the more excited I get about “eating the tainbow” (as I like to call it.)
So instead of stressing about always being there for my family–I am going to enjoy the moments I do have. Play tent with my son more. Smile with him as he drags me off the couch. Walk hand in ahnd with my husband through Disneyland feeling nastalic and yet parent proud about our son gradually growing up int he imagination we once (and continued) to explore in.
And instaed of worrying what others will say when I or whether or not i’m portraying the right image–I’m just going to worry less about the image and things that don’t exist and put my mental and emotional effort into the things that do exist. To the heart-felt missions I want to stand behind. Remember the blessings from those around me (at church, home or elsewhere) and how each person I know can truly have an impact.
What’s your plans for 2019? Do you have any? Is it worth making more? Let’s try to focus on what matters this year on a deeper level. Instead of living through the fake images that surround us.
It’s been a while since I’ve been able to get back to my blog. Kids happen and memories to me are more important that documenting it all.
But I realized that my blog was a little outdated and needed some help. And the only way it was going to get help was for me to get back into posting and writing.
So just be prepared for new posts, new items and (dare I say it) — its own Facebook “page.” Please help it gain popularity by liking the page, checking out the blog and even suggestion things on the page you may want to hear discussions on. I’m pretty much open to anything. Musings of an afterthought, afterall 😉 (of course subject to personal choice.)