We fell back to Standard Time at 2:00am on Sunday & while most adults love getting an extra hour of sleep, I sure don't because losing Daylight Savings Time causes me so much misery. In fact, it's a day that I dread every single year. That may sound extreme, but it's true. The reason why I dread it? The time the sun sets. Where I live, Saturday night’s sunset was at 5:36pm & Sunday night, it was at 4:35pm. The earliest sunset of the entire year is 4:14pm. That's just plain depressing. While I've lived in Massachusetts my whole life, interestingly, my happiness has always been dependent on how late it stays light out. So, the long, cold winter nights are understandably detrimental to my mental health. Difficulty adjusting to change can make both springing forward to Daylight Savings Time & falling back to Standard Time incredibly stressful for autistic people, but for me, it's only falling back that I struggle with. This is because I just LOVE springing forward to Daylight Savings Time. That extra hour of daylight at the end of the day brings me so much happiness & when I view a change as positive, I'm all for it! It's the negative changes that I struggle with. In fact, I don’t start accepting the fact that we're in Standard Time until the end of February because that's when the sun sets at a much more reasonable hour. The end of February is almost three months away. Plus, once I fully adjust to & accept Standard Time, springing forward is just a few short weeks away (one of my favorite days of the year). It taking that long to adjust to an hour time difference is not okay. When the sunset slowly gets earlier & earlier by a minute or two at a time each day, that's okay because the change is so small. The sun setting an hour earlier is a huge shock to my system because that is a big jump & that is why that is a struggle for me. And yes, I am all for making Daylight Savings Time a year round thing, like they keep talking about. Now, is it March yet? ☀️
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Happy Halloween! Well, maybe it's a Happy Halloween to you, but it's not for me. I've never liked this haunting holiday. So, there. I've come out & said it. I don't like Halloween! Now, having said that, if you're a Halloween-loving person, that's no biggie. In fact, one of my closest friends has a Halloween birthday & I just love her excitement around this frightful day. But, for me, Halloween just isn't my day. And that's okay, too. This Is Why:
I don't dislike everything about Halloween, so this is what I do like about the holiday:
Halloween Challenges For Autistic People:
How You Can Help:
I love taking care of my grandpa, who I call Gung-Gung. I really, really love it. I wouldn't trade this precious time I'm getting with him for the world. But, caregiving is HARD work & it's even HARDER work for an autistic person, like myself. Let me tell you why. My Gung-Gung has to get a blood test once a month & it's my responsibility to take him. It's an important responsibility, but it also gives me precious time with him. I love that one Thursday a month. This past Thursday was Blood Test Thursday. Going With The Flow: When I arrived at my Gung-Gung's apartment complex last week, I was surprised to find that the visitor parking had completely disappeared. Autistic people, like myself, like to be prepared & don't like surprises, like this one. Not that anyone would like a surprise like this. It's just more of a problem for autistic people. My mom had recently told me that a notice went out that they were reducing the visitor parking & there were now only going to be three visitor parking spaces. (There used to be roughly double that.) But, signs that read Resident Parking Only were posted in equal intervals, in front of the old visitor parking spaces. That included one of the spaces that was supposedly still a visitor parking space. So, I opted to park on the street. I really don't like doing that, since it takes longer to get inside the building. Plus, getting the car to bring to my Gung-Gung who's waiting for me when I need to drive him somewhere takes longer. I don't want him to yell at me for taking too long, which does happen sometimes. When I asked my mom about the parking situation later on that night, she didn't know what I was talking about & said that that sign wasn't there yesterday. 🤷🏻♀️ Also, walking into my Gung-Gung's apartment, whether I'm there for scheduled caregiving duties or I'm there for a surprise visit, gives me heightened anxiety. I never know what I'm going to be walking into. This gives my mom, an allistic, or a non-autistic person anxiety, as well. But, for me, my anxiety about this is on a whole other level. Autistic people need to know what to expect; they don't like surprises. I personally feel like I need time to prepare for whatever situation is about to happen, but not knowing what I'm walking into doesn't allow me to do that. The following questions usually run through my head:
Anyways, we took the elevator downstairs, I ran to get the car as quickly as I could, & off to the blood test we went. The medical building we go for the blood test is right next door to my Gung-Gung's apartment complex, but due to his age & his physical abilities, it is still too far for him to walk. So, I drive. Putting Someone Else's Needs & Wants Ahead Of My Own: I had this idea in my head that I wanted my Gung-Gung to sit outside with me after his blood test. It was an absolutely gorgeous day & now that we are sadly into the month of September, these perfect days are getting to be more limited. I am someone who needs a lot of sunshine in order to function, so I take a vitamin D3 prescription year round. Plus, I shine a happy light on my face for about ten minutes before getting out of bed in the morning during the late-summer through the mid-spring months. Like many people living in this part of the country, I believe I struggle with seasonal affective disorder, although it’s never been diagnosed. Anyways, once my Gung-Gung's blood test was over, I told him that it was a beautiful day & asked him if he wanted to sit with me by the gazebo across the street before going back to his apartment. It's good for him to get fresh air, something he can’t do without accompaniment. It's much easier to convince him to sit outside if he's already outside rather than if he's inside his apartment. Plus, I was giving up time that I would normally be spending out on the back deck in the sun to take care of him. Much to my disappointment, especially since I knew it would likely be much colder when it is time for his October blood test, he didn't want to go to the gazebo. He told me he just wanted to go back to his apartment afterwards. Knowing that he would make a scene if I tried to convince him otherwise, I knew I had to take a step back & let him take the wheel. This is something that's difficult for anyone in the caregiver position, but it is even more difficult for an autistic person. However, he obviously changed his mind between the time we had this conversation & the time we left the medical building. When we left the building, he started heading straight for the gazebo even though I told him I would drive him there. We sat on a park bench in the gazebo park for a short while, side by side, him tapping his hand on my leg to a beat & me with my arm around his shoulders. This right here was my old Gung-Gung. This was what we did together ever since I was a young child, way before he had his devastating stroke. Although, I only started putting my arm around him when I got big enough to do that. 😉 These glimpses of my old Gung-Gung overwhelm me with so much warmth & happiness that it is hard for me to properly convey how I feel. I've always felt so safe, secure, protected, loved, & cared about when his arms were around me. While I still feel some of those same things today, despite him being disabled & me being all grown up, I feel so blessed to now be doing the same thing to him. Giving him the safety, the security, the protection, the love, & the care that he always gave me while also doing something that is good for him. Getting him some fresh air & sunshine. On another note, I wrote more about how being an autistic caregiver affects me in blog posts entitled My Experiences Being A Caregiver With Undiagnosed Autism & Strengths & Weaknesses Of Caregiving With Autism, if you'd like to read those prior blog posts. The Grief We Deal With:
When my Gung-Gung decided that it was time for us to go inside, we went in a nearby door & up the elevator to get to the enclosed bridge that leads to the building that he lives in. This walk is a little far for my Gung-Gung & his favorite sitting spot is on this bridge. So, this is where he likes to take a walking break. You get a perfect view of the nursing home associated with his apartment complex from this bridge. This nursing home was where my grandma, who I called Haw-Bu, passed away. So, he feels a closeness to her when he sits there & looks at the nursing home. He & I sat in two chairs by a window with a view of the nursing home & almost immediately, he was gesturing & asking why did she have to die before him. Why did she have to leave him here on Earth? He then bursted into tears & was sobbing for the love of his life of over sixty years. It's probably been over a year since I've seen him cry like this for his wife. I came around behind the chair he was sitting in & wrapped my arms around him in a loving & a comforting embrace until he was able to collect himself. Once he let me know he was okay, I sat back down in my chair again & wrote in big letters on my whiteboard Kim♥ Gung-Gung. When I showed it to him, he smiled at me with love in his eyes. I mostly communicate with him through simple, written language now, along with some gesturing. Because his stroke caused him to acquire a condition known as global aphasia, he no longer has the ability to communicate using language. So, he can no longer read, write, speak, or understand language, with the exception of simple phrases written on a whiteboard. It is easier for him to understand third-person language rather than first-person language. So, this was why I chose to use my first name rather than a pronoun when talking about myself. Is There Something Wrong With Me?: In times like this, I wonder if there is something wrong with me. When my Haw-Bu passed away, I never grieved. I never even shed a single tear. In fact, all of the sadness I experienced after her passing was caused by my Gung-Gung's sadness & grief. If it wasn't for him, I wouldn't have experienced any sadness at all. How is it possible that she was my grandma & I don't miss her? There have even been times where I have wondered what it was about my Haw-Bu that my Gung-Gung was attracted to. What did he love about her? Don't get me wrong, I'm so glad for their absolutely incredible love story, for without their love story, I wouldn't exist. But, I could never relate to my Haw-Bu & many of the interactions I had with her were beyond frustrating, leaving me feeling flustered & misunderstood. I spoke at my Haw-Bu's celebration of life that my family held after her passing, but I had a lot of trouble writing the words I was going to say to my family & to my grandparents' friends. Much of the reason I spoke had to do with the fact that my brother & my cousins were speaking, so I felt like I needed to speak also. I was my Haw-Bu's oldest grandchild, as well as her only granddaughter, after all. But, how do you speak about someone who you were supposed to have had a relationship with, but didn't? I feel so guilty that I feel this way. In the end, though, my speech did make it sound like my Haw-Bu & I had a very close relationship. Many of her friends came up to me afterwards & made comments about how great it was that I had such a close relationship with my Haw-Bu. I felt like I had just lied to almost everyone in that room though, which was crushing. One thing that differentiated my celebration of life speech from the speeches of my Haw-Bu's daughters & grandsons was my speech didn't mention cooking or food. At all. My Haw-Bu loved cooking & the way she showed love was by feeding you. Food wasn't my love language. In fact, the amount of time she spent in the kitchen & the fact that she was always trying to feed me was quite annoying. This was particularly frustrating because most of the time she tried to feed me, I didn't feel like eating & forcing myself to eat to make her happy was terribly painful. I eat food because I need to in order to continue to be alive. I don't eat food because I enjoy eating it, especially because I almost never have a good appetite. I know that this isn't how most people think about food. I've always felt that if my Haw-Bu had spent a lot less time in the kitchen during visits, I would've been able to have a relationship with her. For one of my brother's birthdays when he was younger, he asked our Haw-Bu to cook him & some of his friends a Chinese feast. I wouldn't have ever dreamed of doing such a thing because I always wished she would spend quality time with me, outside of the kitchen. I wanted this from the time I was young child until she passed away & I never got it. I wrote more about how grief affects me & other autistic people in my prior blog post entitled Autism & Grief, if you'd like to read that prior blog post. Conclusion: All in all, this past Thursday was a good day. Everything went almost perfectly. I was impressed by the number of people who walked past my Gung-Gung & me sitting on the bridge who said hello to him using his name. That meant all of those people know his name even though his language abilities are very limited. (I usually spend most of my time inside my Gung-Gung's apartment when I visit.) One of the things that made my Haw-Bu hesitant about moving here was that no one here would've known my Gung-Gung before he had his stroke. But, in a building like this, he's getting much more social interaction than he ever got in his stand alone house in California. In fact, I even explained that Gung-Gung means maternal grandfather in Chinese to one of my Gung-Gung's friends who walked by. This particular friend saw the whiteboard that was lying in my lap that read Kim♥ Gung-Gung & asked me what a Gung-Gung was. |
AuthorHello! My name is Kim, I didn't know I was autistic until I was in my thirties, & this is my story. Categories
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