My Sister Rachel (Part 5): Challenges

I’ve never written a series this long before, but I’m planning to wrap this series up in a 6th post to come soon. If you missed any of the other posts and you’d like to read them, just do a search at the top for “My Sister Rachel” and they should all pop up.

I’m going to try to keep it real in this post, and today’s topic is “challenging times.” Coincidentally this is also the longest post in the series, so bear with me if you attempt to read through it. I’m sure it’s no surprise that there were times with Rachel that were really difficult and stressful. Honestly, there were many times that just really sucked. I don’t say that to blame my sister or my family for how things were, it is just a true statement due to the circumstances we found ourselves in.

Rachel had limited abilities to communicate with us how she was feeling or what she was thinking, and I’m sure much of the time she felt frustrated that we didn’t understand her. She probably felt frustrated when things didn’t seem “right” to her and none of the rest of us were doing anything to fix it. She wasn’t aware of all the social rules that most of us follow (like giving others personal space, or knowing to stay quiet during a movie so as not to bother anyone) and so inevitably she would commit many social taboos that would draw attention, very often negative attention.

Anger

I was probably only in Kindergarten or elementary school, but by that time I had already learned to associate Rachel with negative feelings and outcomes. Without even realizing it at the time, I strategically began to avoid being around her or interacting with her. I had learned that I needed to keep myself and my things away from Rachel if I wanted them to be out of harm’s way. As I said in an earlier post, we really didn’t play together much anyway (due to being on different developmental levels), and so we each kind of did our own thing and had our own interests. We had our own rooms and our own toys, and my toys and belongings were very different from Rachel’s (again, due to our differences in abilities). I’m not sure if that was the reason Rachel seemed so intrigued with my room and my things, but there were many times that she would take something of mine, and essentially destroy it. Sometimes she might find a tag on one of my stuffed animals and rip it off (tearing a hole in it) or she’d crumple up a drawing I was really proud of. I don’t think it was done intentionally against me, but it made me so upset. (I’m sure older siblings have experienced similar situations where a younger brother or sister broke something of theirs.)

One time in particular when Rachel broke something of mine stands out to me. Earlier we had gone to a science museum, and I had gotten a wooden stegosaurus skeleton that you could put together piece by piece, kind of like a 3D puzzle. (It was so cool!) I had assembled it and had it on display in my room. I think the door to my room was open and I was in another part of the house, but I remember hearing a crash and running back to my room to find Rachel standing there and the stegosaurus smashed to pieces on the floor. I’m not sure why this event, out of all the times Rachel broke something of mine, sticks out in my memory, but I remember being devastated. That event might have been the catalyst to cause us to put a lock on my door.

I mentioned that I had learned to keep not only my things, but myself, away from Rachel in order to avoid harm. Another not-so-fun thing about Rachel was that around this same time (Kindergarten or elementary school) Rachel started having violent tendencies. If she got mad, her way to express it was through hurting herself or someone else. And if you were the person nearby, you might find yourself hurt. Rachel was always bigger and stronger than I was, despite us being the exact same age, so fighting back wasn’t a great strategy for me. I learned instead that I was much faster than her, so I could outrun her if she was trying to attack me. There were still plenty of times though when she would get me by surprise, and being the good girl I was, I knew I shouldn’t try to hurt her back. That was SO frustrating to me – it never felt like justice was served. (Probably was the start of a lot of repressed anger for me to be honest.)

On one occasion, however, I did retaliate back at Rachel, and I didn’t hold anything back. We were older, maybe junior high age, and Rachel had hit me or hurt me somehow. I remember being so mad, and I decided I was going to hit her as hard as I could. And I did. I slapped her on her back so hard that it left a hand print, and I remember Rachel started to cry. (Sorry Mom, I don’t think I ever told you that before!) Of course then I felt terrible, but it was a mixture of feelings – I knew I shouldn’t have done it, but at the same time it felt like I was standing up for myself. (I’m sure there could have been a better way to do that…)

Fear

Besides being fearful for my physical wellbeing sometimes (her violent outbursts did get better over time), I began to have a lot of fear about what other people would think – whether or not they were judging me or my family for how my sister behaved.

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My Sister Rachel (Part 4): Guest Blog Post!

I am excited to share with you the very first guest blog post featured on my blog – and it's from none other than my wonderful husband, Dean! I hope to make guest blogging a more regular feature on here, so hopefully I'll have some willing guest writers! I'm thankful for more perspectives on the topic of interacting with people with autism and other intellectual differences. - Erica

Erica has shared her perspective of growing up with her sister, but we thought it would be interesting to also share some of my experiences with Rachel.  In my current job, I work with individuals with intellectual and developmental disabilities, just like Rachel.  However, I never imagined I would be working with this population when I thought about what my career would look like, and it’s been a wonderful surprise.

I don’t remember having much interaction at all with people with disabilities when I was growing up.  I’m sure that I did without being aware of it, but in general I was around kids and other people who looked pretty similar to myself.  I was taught and raised that people different than me were still human beings, and that I should treat them with dignity and respect.  In spite of that upbringing, I just didn’t know much about how to interact with people with disabilities.  

I think it is really common for people to not know how to approach or even initiate a conversation with someone who is different from them.  (This is especially challenging for us fellow introverts.)  So when I went to visit Erica’s family for the first time and met Rachel, I honestly didn’t know how to respond.  She did not have traditional conversation skills, did not speak to me as I walked in the door, and very often did not seem to notice that I was around at all.  However, I was able to say hello to her and it eventually became pretty natural to be around her.  

There were some interesting things that happened before it felt  natural though.  As kind of a nervous habit, I would clear my throat a lot without even knowing I was doing it.  When I went to meet Erica’s family for the first time, I did plenty of throat-clearing (I mean meeting your girlfriend’s family can be intimidating!).  I remember we had all sat down to eat dinner for the first time, and I was sitting right next to Rachel. Inevitably, I began clearing my throat, and Rachel suddenly grabbed both of my hands and moved them to my mouth.  Initially I was really taken aback and confused, thinking that she was trying to hurt me or something.  But Erica’s family explained that Rachel was taught that it is polite for a person to cover their mouth when they cough or sneeze, and she was just on the lookout for people who did not follow the rules.  Although I was just clearing my throat and not actually coughing ( my mouth was actually closed while doing this) Rachel still felt I needed to overtly cover my mouth with my hands, even if it was after the fact.  Once I figured that out, it was not a problem to go ahead and do this on my own.  But it took knowing the additional context and reason behind her actions to help me understand why this was significant.  

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My Sister Rachel (Part 3): Quirks

This is part 3 of a series describing my experience of growing up with a sister who has autism. If you missed them, you can go back and read parts 1 and 2. 

If you’ve followed me in the past year or so, you know that I am a BIG My Hero Academia fan. When I thought about what to title this post, I kept coming back to the word “quirk.” In MHA, quirks are superpowers, so when a person’s “quirk” manifests, it could be something like super strength or the ability to manipulate water or fire.

All of us have our own quirks – not superpowers, but idiosyncrasies. Often when we think of the term “quirks,” it brings with it a connotation of something weird or undesirable. I like the reframe that MHA provides, to look at quirks as a unique part of your personality, and something that could even be considered a superpower.

Rachel had quite a few quirks – some that have stayed consistent through most of her life, and others that seemed to have come and gone.

From a very young age I can remember my mom cutting out the tags in all of her shirts and pants. Following this same vein, if a piece of clothing had a string loose, that was something that would immediately need to be taken care of. Rule #23: tags and strings on clothes must be removed at all costs. If we didn’t get to it in time, Rachel would have pulled it (and possibly unraveled much of the item) on her own. Rachel was not the most careful or gentle in her actions, so her pulling a tag or string off could result in a giant hole in the garment in question.

In general, Rachel had her own ideas about what she deemed out of place in the world. And if something didn’t look right to her, by golly she was going to fix it.

One time when I was a freshman in high school, I had gotten my hair cut in shorter layers (above the shoulders) and parts of my hair flipped out here and there. I was in the bathroom (Rachel and I shared a bathroom) finishing up my hair and makeup, and I noticed that Rachel had walked in with a pair of scissors and was coming straight towards me. RULE #52: IF SOMETHING NEEDS TO BE FIXED, FIX IT. I got the scissors out of her hands in time, but I’m 99% sure that she was going to “fix” the parts of my hair that she felt flipped out to the sides a little too much.

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