What does my relationship with my sister look like today? All of my other posts have focused mostly on my experiences growing up with Rachel – but what do my experiences with her look like now?
In some ways, it’s the same. I still don’t interact much with Rachel, in part because of our differences, and in part because we don’t live in the same state anymore. When I was 18, I left to go to college out of state, and even took classes during part of summer. Since then I have never really spent that much time living in the same space with my sister.
While I was in college in Arkansas, Rachel stayed home, still attending her high school for a few extra years (I think until she was 22.) After that, she began attending a day program for adults. The program organized activities and events, and it allowed Rachel socialization (on the small chance she desired it). I know some day programs train people to develop skills that they will need to have either at a job or to live on their own – we knew Rachel would never live on her own or have a job, so she did not need skills as such. But the program was tailored to allow people to function at their individual levels.
In the past few years, Rachel has transitioned to living in a group home after living with my parents for over 30 years. It’s a normal-sized house, with Rachel being one of three people with disabilities living there. A mother and daughter are the caretakers, and it’s actually a very nice set up. Each person has their own room, and Rachel still gets to go to her day program on weekdays. My parents spend Sundays with Rachel – they pick her up from the group home and take her to church, and then have lunch together afterwards.
The decision to move Rachel to a group home was not an easy one, even though it was the right one (I suppose I’m speaking for my parents here.) I remember talking with my mom and dad about how they wanted to find the right place for Rachel to live, and didn’t want to rush the decision due to an emergency or crisis. The transition went better than any of us imagined (change is hard for Rachel, after all) and Rachel seems to be really thriving in her new environment. It’s nice to see. I think Rachel knew that it was a big, important milestone for herself. I think she likes the independence it brings having her own space away from mom and dad – just like any other grown child feels.
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.
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.
Threads of Anxiety 