Tag: autism

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

deanpie484 Comments 
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

ericapye1 Comment 
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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My Sister Rachel (Part 2): The Early Days

ericapye2 Comments 
featured image: my sister and I in the "Buddy Buggy," I'm wearing my infamous bat costume and my sister is covering her ears probably due to sensory overload – this sums up our childhood well

Did you know that a set of female-female twins is called sororal twins? I literally learned that last month from a friend (who is not even a twin!)

I’ve been sorting through all of my memories of my sister, trying to decide which stories would be the best to share. There are too many to share exhaustively on the blog, so I’m trying hard to narrow it down. If there’s a story or a specific question you have that you’d like me to elaborate on, just ask!

All of these stories are taking place back when I was a child or young adult, so at a minimum, I’m writing about events that happened at least 16 years ago. That’s a lot of time for memories to morph and change, not to mention processing an event as a child is WAY different than experiencing an event as an adult.

Some of the stories I share will be funny, crazy, and exciting (some of them were funny only after the fact.) Some stories will be hard to read, sad, and might be triggers for painful experiences you’ve had in your own life. My goal in sharing all this is to offer my unique perspective, and to help my readers develop empathy and compassion for others.

So, here we go:

I guess it makes sense to start near the beginning, back in our younger days. I asked my mom to send me old pictures of my sister and I, and she wanted to be sure she sent me our “very first picture together”:

(Very funny, Mom!)

Probably the earliest back I have clear memories with Rachel would be when we were in preschool. We went to “Side By Side” preschool, which I doubt exists anymore. The whole premise of the school was to integrate children with disabilities and regular-functioning children – obviously my sister and I were a great asset because we added a “plus 1” to each of those categories. Somewhere inside a box at my parent’s house, there’s a newspaper article that was written about the preschool and my sister and I, simply because it was so novel to integrate “regular” kids and “special-needs” kids. (This was back in the 90’s, remember.)

Honestly, I don’t remember interacting very much directly with Rachel at preschool. This was not unusual – much of the time we were doing our own activities side by side (ha! see what I did there!) but not actually together. Rachel did not really play with other kids that I can recall. One of the listed signs of autism includes “inability to play ‘pretend’ games, preferring solo play” and I would say that described Rachel well.

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