By Stacy Ellingen, 2017-05-05
Whether it’s a fancy restaurant or a fast food restaurant, going out to eat is a common activity for most people. Eating is a necessity of human survival, but it’s also a very social activity. No matter what kind of event people attend, it’s very common for eating and drinking to be involved.
For people with some disabilities, eating can pose a variety of challenges. Depending on the circumstances, some people cannot eat orally and have to be tube fed. Fortunately, I’m able to eat orally. In fact, my friends and family will say that I love to eat! People are surprised how much I eat because I don’t gain much weight. The reason why is because my body never stops moving unless I’m sleeping. I do need assistance eating though. I’m not able to prepare meals or feed myself.
Needing assistance eating has its challenges as well. One of them being that unlike most people I can’t just grab a snack whenever I want. When I have care shifts, I need to make sure I get enough to eat and drink to last me until the next attendant comes.
There are a few finger foods I can eat on my own, but because of my poor fine motor skills, I often drop things on either myself or on the floor. Sometimes, I can handle things such as string cheese, beef jerky sticks, and hard candy myself. Though, again, those things have to be unwrapped and placed where I can easily grab them. Recently, because of staffing issues, there have been a few times where I’ve fed myself breakfast. The meal consisted of string cheese, fruit snacks, and pretzels. Not the most nutritious breakfast, but those are things that I kind of eat myself. Due to an aide calling in sick late the night before and nobody picking up the morning shift (I was stubborn and didn’t want my parents to come up to help), I slept in my wheelchair one night. The night before I had my night aide put finger food on my table for the morning, but I also had her put my morning pills on the table. I also had her duct tape a cup of water to the table. Now, people have to understand that I take five small pills, and having pretty limited fine motor ability, picking up these small pills and getting them into my mouth takes talent. Somehow, that morning, I was able to get all five pills in my mouth without dropping a single one! I think it was luck more than anything; I probably couldn’t do it again.
Because cerebral palsy affects all of my muscles in my entire body, muscles in my mouth are affected too. Sometimes, I uncontrollably roll food off my tongue. Food often gets on my clothes. When I’m at home, I usually wear a towel on my shirt when I eat or drink anything. When I’m out to at a restaurant or in public, I try using napkins instead because it’s more acceptable.
Having to be fed has some psychological effects as well. My friends and family don’t have a problem feeding me in public though. Until a few years ago, my friends and I would go out to eat all the time and they’d feed me. Now, since most of my friends have significant others and families, it’s a little different. I usually have my mom come to feed me because it’s just different. I’m sure they would have no problem still feeding me, but I feel weird having them assist me when they have their own children to worry about. It’s just one of those awkward situations.
When I go out to eat, people do stare. It does make me self-conscious, but I try to not let it bug me. It’s just one of those things that I kind of ignore. Obviously, some foods are messier to eat than others. Normally, I don’t take that into consideration when choosing what I want to eat simply because I figure I should be able to eat what I want.
Healthwise, up until a few years ago, I had no food restrictions. When I started having serious gastrointestinal Issues a few years ago, I had to adjust my diet. I have acid reflux (which is common among people with cp), so I have to avoid acidic foods. I also don’t eat fast food anymore because we It doesn’t sit well with me. Certain textures of food do mess with my gag reflux. For years, I thought it was just something with me, but I’ve learned others with CP have the same problem. Things with certain textures, such as pies, yogurt, and filled donuts, I can’t eat because those kind of things make my gag reflux bad.
Many people don’t even think twice about grabbing a snack from the fridge. For many people with disabilities and health conditions, mealtime isn’t always an easy time, but since eating is an essential part of life, we do what we have to!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
By Stacy Ellingen, 2017-04-11
For most women, fashion is important at least to some extent. Whether it’s their wardrobe, hairstyle, jewelry, shoes, or another facet of beauty, ladies enjoy getting glammed up every once in a while. Women with disabilities are no different. We have the desire to look pretty too. For those of us who have physical disabilities, looking fashionable (or the way we want) comes with many obstacles that most people never even think about.
Fortunately, I consider myself a pretty laid back girl in terms of fashion. Unless I’m going out with family or friends, you’ll normally find me in jeans and a sweatshirt or sweats. Those are the easiest kinds of outfits to wear. When buying clothes, I have to be conscious of things that don’t even cross most people’s minds. Things such as color, style, length, size, and cut all need more consideration when I buy clothes.
Since I’m in a wheelchair, I have to be very conscientious of how shirts and dresses are cut. Because of how I sit, certain cuts are way too revealing. Low cut shirts and strapless dresses don’t work for me. Certain styles of tops are really difficult to get into because my arms often don’t bend very easily. When buying pants, I have to make sure they are not too long because otherwise I slip on them while transferring. I also have to make sure that there aren’t too many bulky buttons or rhinestones by the waist of the pants because my seatbelt on my wheelchair presses on them and irritates my skin. Length of dresses is something else I need to be aware of. Since I sit most of the time, many dresses are often too short; on the other hand, I can’t wear floor length dresses either because they would get caught in the tires of my chair. It’s a balancing act.
Color of clothes—especially tops—is another thing that I need to be conscientious of. Due to cerebral palsy, I drool. Certain colors of shirts and dresses show drool more. Of course, I can’t totally avoid wearing those colors, but I do make an effort not to wear them for special occasions. In fact, a good example of this is when my sister first started looking at colors for bridesmaid dresses for her wedding, she asked for my opinion between two colors. Of course I said it was up to her (and I’d make anything work), but I reminded her that one of the colors would show my drool less. I don’t think it was just because of that, but she did end up choosing that color.
Shoes present another whole set of issues. Most of the time, I wear tennis shoes because they’re the most comfortable and the easiest type of shoe to stand in. It’s challenging to find even tennis shoes that work for me. I need shoes that have good grip the bottom of them because otherwise I slide all over during transfers and can’t push myself in to my chair. It’s getting harder and harder to find ones that have good grip. I don’t wear orthotics anymore, but I did when I was younger. When I wore those, I needed to wear high-tops tennis shoes with them. Finding high-top shoes for little girls was nearly impossible. We often ended up buying boys shoes for me. It’s very rare for me to wear anything other than tennis shoes. Finding dress shoes for me isn’t easy either. I have to have something that either ties or has an adjustable strap otherwise it won’t stay on. Unlike for most ladies, shoe shopping isn’t the most enjoyable thing for me. I’d love to be able to wear all of the cute shoes that are out there, but that’s just not a feasible option.
My wardrobe isn’t the only fashion item my disability effects. When choosing hairstyles, I have to think about what would be easy for my care workers to do and what would stay out of my face. My family knows I’m an extremist when it comes to hairstyles. I like it either very long or very short. Due to my muscle movements, many hairdos tend to fall out. When I’m growing it out, we try clipping it back several ways until it’s long enough to be in a ponytail. Unfortunately, like most girls, I find growing it out to be a pain. Between my body movements and hitting my head on the headrest of my chair, I feel like my hair is never really perfect, but I think every girl feels that way!
Things like makeup and jewelry present similar challenges. I don’t wear makeup very often, but when I do, I have to have someone else apply it. Again, with my uncontrollable muscle movements, this can be hard. Eye shadow, blush, and a little mascara (on the top eyelashes only) are about all I ever wear. I also only occasionally wear jewelry. Necklaces and earrings are okay most of the time, but bracelets and rings can be hard to wear because my hands are always moving and bracelets and rings often get caught on my chair and keyboard.
Like I said, I don’t dress up very often. Part of is due to my personality, but I think part of it has to do with my disability. Would I dress up more often if I didn’t have limitations? It’s very likely I would, but it’s also likely I’d have a completely different lifestyle if that were the case. Fashion has never been a top priority in my life. I always try to look presentable when I’m out in public; however, I have never been to obsess over fashion!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
By Stacy Ellingen, 2017-03-06
No matter how old you are, no matter whether you’re single or married with kids, or no matter what your economic status is, every human being depends on others to some extent. People may not like to admit it, but nobody is really ever totally independent. Obviously, there’s a broad range of dependency. Everyone likes to be viewed as being as independent as possible. The notion of independence comes with a certain level of clout. When people accomplish a task independently, it’s viewed as a positive thing. For many people with disabilities, being able to do certain everyday things (that others often take for granted) independently is often a huge accomplishment.
As I’ve shared in past entries, I need assistance with all of my basic needs. Someone has to help me roll out of bed in the morning, use the restroom multiple times throughout the day, get showered and dressed, prepare and eat all of my meals, and put me to bed at night. To most people, that sounds the complete opposite of the definition of independent. Yet, most people who know me say I’m a pretty independent person. Yes, I need physical assistance with basic needs, but I’m able to do a lot of tasks despite my limitations.
I learned a whole new level of independence last summer when I switched to Self-Directed Personal Care (SDPC) through IRIS. I’ve been hiring and scheduling my own staff for over eight months now, and it has been quite a learning experience to say the least. Previously, I had always had home care agencies that would hire and schedule all of the workers. As I explained in a previous entry, the last agency I had was a complete nightmare. I was leery about taking on the responsibility, but I really didn’t have a choice.
To find workers, I posted ads on sites such as Facebook and indeed.com. People would apply via email, and then because I’m non-verbal my mom would call them and interview/tell them about me. If the person sounded legit and interested, I’d email them the packet of forms to fill out (I downloaded the forms and filled out as much as I could). Once the person completed the paperwork, they’d email me and we’d set up a time for them to drop off the paperwork at my apartment. I made sure everything was filled out correctly, and then I’d email my IRIS consultant to setup a time for her to pick up the packet. As I mentioned in my last entry, it took quite awhile for some of the paperwork to process, so I had to stay at my parents for close to a month until enough people were approved.
I created a Facebook group for my staff where I post and organize everything. I currently have 12 approved staff besides my parents. I create a monthly schedule based on the availability the staff gives me. Eight months in, and I’ve already had some pretty interesting things happen. When I first started, I had three or four people turn in paperwork and get approved to work, but then decide they don’t want the job. That’s incredibly frustrating! I had a person who had multiple shifts give less than a four hour notice of quitting.
On multiple occasions, people have called in on short notice (including in the middle of the night) or not shown up at all. When that happens, I message everyone in my group right away to see if anyone can help me. Unfortunately, not many people are willing to pick up shifts on short notice. I haven’t found a good solution to this. Fortunately, I’ve been blessed with great parents who have come to my rescue many times. I feel absolutely horrible that I have to depend on them. Since I’ve switched to SDPC, they don’t feel comfortable traveling out-of-state because they fear I’ll need something. That’s not right, but I don’t know how to fix it.
Call-in and no shows aren’t the only issues I’ve had. I debated whether or not to share this story, but I think it shows the reality of personal care for people. One morning in December, I had a new girl scheduled to get me up. She had read my care instructions (I have step-by-step instructions typed out for each shift) and she had observed one shift. The first part of the shift went really well. The problem came when I was transferring off of the toilet into my chair. When I sat down, I wasn’t far enough on my seat and I slid onto the tile floor. Luckily, I wasn’t hurt, but the girl couldn’t get me off the floor. She was freaking out and didn’t know what to do. I gestured her to grab my cell phone off of my chair and got her call my dad. My dad said he’d come help, but it’d be close to an hour before got there (my parents live 45 minutes away). After he hangs up, the girl starts crying and runs out of my apartment leaving me lay on the bathroom floor! My dad knew something was really wrong when he rang the doorbell and nobody answered (thankfully he has a key). I’m just thankful she called my dad before running out. I wasn’t even upset that I was on the floor. Accidents happen. It was the fact that she left me alone on the floor that upset me. Admittedly, laying on the floor for 45 minutes waiting for my dad, I felt pretty dependent and useless. Needless to say, the girl never came back, and now every new staff I have has to at least one transfer with me when someone is watching before doing it on their own.
With SDPC, I also have to make all of my staff have their hours in and approve them. When you have nearly 50 hours of care per week and 14 staff, it’s quite a chore. I have to make sure every shift in the two-week period is entered correctly and is coded right. If something isn’t correct, I have to contact the staff and have them re-enter it. When people have issues logging into the portal to submit their hours, I have to help them solve the problem as well.
With all that said, being on SDPC has made as independent as I possibly can be. As stressful as it is, I’m much happier and safer this way. While I know I likely will have to go back to having an agency at some point in my life, this is the best choice for me right now.
I realize I’ll always be more dependent on others than most people are, but I’ve accepted that. Given the severity of my physical limitations, I feel like I do pretty well. We all need help to some extent, but, like everyone else, I will always strive to be as independent as possible!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
By Stacy Ellingen, 2017-02-06
As the saying goes, “patience is a virtue.” Whether it’s waiting for a stop light to change or waiting for your first child to be born, waiting is a part of our everyday lives. Yes, some people are better at it than others, but I think everyone is impatient to some extent. I don’t have evidence to prove it, but, based on my experience, I certainly would bet people with disabilities wait more than most. I often tell people that I feel like I spend the majority of my life waiting.
As I’ve explained in past entries, because I need assistance with most of my basic needs, I live a very scheduled life. Everything from the time I get up in the morning, to the times I eat and use the restroom throughout the day, to the time I go to bed at night, everything is scheduled for a specific time. If I need to use the restroom or am hungry or thirsty, I wait for my next assistant to come. If someone is late or doesn’t show, I have to wait to get my basic needs taken care of. Countless times, I’ve been stuck in bed for several hours because someone didn’t show. When that happens, I text people, wait for replies, and then wait for someone to get here to assist me.
Personal assistance isn’t the only thing I find myself waiting on. Since I’m not able to verbally communicate using the phone, I rely heavily on email. While email is great, it’s not an immediate form of communication. People don’t immediately respond to emails. Admittedly, very frequently, I get really frustrated when people take several days or even weeks to respond to emails. It’s especially irritating when I’m trying to get answers to questions or obtain information about something important. It’s difficult, but I try to remind myself that most people aren’t glued to the computer everyday like I am!
People with disabilities also have to be patient when they’re on the so called “system.” Regardless of which government program it is, it often seems like it takes ages to get anything approved or done. Whether it’s getting a piece of medical equipment approved or getting a personal care worker’s background check done, it takes a long time. Some of the things that people have to wait on are often essential to them being able to live their life to the fullest. When I switched to Self-Directed Personal Care through IRIS last summer, I had to live with my parents for close to a month while I waited for enough workers to get approved so that I could live independently in my apartment again. Some of the background checks took nearly two months to complete—it was unbelievable! That’s just one of the many examples I’ve had where I’ve had to wait for the government to process paperwork.
Undoubtedly, almost everyone finds waiting somewhat hard. Having a “go-getter” personality, I find waiting for certain things incredibly difficult. I’ve realized, though, that having a disability has made me more patient than many people. I have no choice, but to be patient in many situations.
What do you find it hard to wait for?
By Stacy Ellingen, 2017-01-11
Happy New Year! Many people think of January as a time to get a fresh start. People often take time to reflect on the past year and think about the year ahead. Some make specific resolutions while others just wish for a better year. Many people my age wish for things like a marriage proposal, a wedding, more children, or to move into a new house. Over the holidays, I got a chance to see many family members and friends. As I listened to them talk about the upcoming year with excitement in their voice, I couldn’t help but think about my life really is.
While in the back of my mind, I’ll always wish for those “normal” things, as New Years rolled around this year, I thought about what I have to look forward to. At the top of my list is getting a new computer setup and a new phone.
Since mid-summer, I’ve been in the process of getting a new computer. My current computer is now over six years old and on its last legs. I originally began researching new computers a few years ago, but I discovered my adaptive keyboard wouldn’t work with updated operating systems. I had been checking the company’s website periodically to see if there was updated software for the keyboard. In July or August, I realized that the company had discontinued the keyboard. It was then I knew I needed some help. After contacting several different people trying to inquire about how to get funding for an assistive technology assessment (AT) done, I ended up reopening my Department of Vocational Rehabilitation (DVR) case and using “post-employment services” to get an AT assessment done. After my case was opened, I had to pick a vendor to do the assessment. Due to a lack of communication, this ended up being a long drawn out process.
I chose to go through my regional Independent Living Center (ILC) to do the assessment. The assessment was finally scheduled in mid-December. The specialist asked me a bunch of questions about my history and abilities via email beforehand, so, when he came to my apartment to meet with me, he already had some ideas. My biggest issue was that I need mouse functions that are built into an enlarged keyboard. Due to spasticity from Cerebral Palsy, I’m unable to use a regular mouse. I control the mouse using buttons on my keyboard. He brought some adaptive equipment for me to try and he did some research afterward; however, ultimately, we discovered the best option for me would be to get a new computer with the same operating system I currently have (and not get the updated system) and buy a new adapted keyboard just like the one I have (luckily other companies still sell the discontinued keyboard). There isn’t any other enlarged keyboard on the market that has mouse functions built in. While, admittedly, I’m pretty disappointed that I have to get an outdated system because technology hasn’t advanced enough, I’m thankful that I’m able to at least get a “new” computer. The AT specialist also recommended some additional software programs that will save me a lot of time. I’m waiting for him to finish up his report and send it to DVR. Then, we can determine what the next steps are and hopefully, get it all ordered!
Additionally, I’ve been looking at getting a new cell phone. My current phone is about a year and a half old. Depending how old you are, that’s either considered pretty new or pretty old. The reason I want a new phone is because I discovered I can access a phone with a bigger screen easier. Given my limited fine motor ability, many people are amazed how well I’m able to use a touch screen cell phone. I’ve come to depend on my cell for much more than calling and texting. I use it to communicate with others most of the time. As I’ve mentioned in previous entries, I have an iPad for a communication device, but, because I can’t pull up to any tables when it’s mounted on my chair, I rarely use it for day to day communication. I’ve found that I can type a message on my phone (which is conveniently mounted on my chair) and have people read it. I’m also able go on the Internet and do emails on my phone. It has really become a lifeline for me. Having a phone with a larger screen will just make my life easier.
So, while getting a new computer and phone probably isn’t a big deal to most people, it is to me. It’s something I look forward to this year. It’s something that excites me because both of these things are things that I spend most of my time on. I’m sure, like every other year, this year will be filled with ups and downs, but that’s a part of life. We just have to make the best of it!
By Stacy Ellingen, 2016-12-07
As the saying goes, “A dog is a man’s best friend.” Many people love pets. Animals are like therapy for many people. Many say having a pet actually expands a person’s life expectancy. For animal lovers, their pets become part of the family. When pets pass away, the owners grieve almost like the pet is a person. For many people, a pet serves as a companion. Either you love pets or you avoid them at all costs.
For many people who have disabilities, pets are a source of companionship. Pets, mainly dogs, can be trained to actually physically and emotionally help people with disabilities. Service dogs and their owners go through intense training. The dogs are trained to do a variety of things based on the owner’s needs. If a person has a visual impairment, a dog can be trained to guide the person around. If the person has a seizure disorder, a dog can be trained to detect oncoming seizures. If the person is in a wheelchair, a dog can be trained to pick up things the person dropped or push automatic door buttons and elevator buttons. Dogs are also being trained to work with people who have autism and anxiety. They have a calming effect. I think it’s absolutely amazing what dogs are able to do.
Personally, I’m not an animal person at all. I admit, most animals scare me. I think it’s because if an animal jumps on me, I can’t protect myself. Although I’ve never had that happen, I shy away from most animals. When I’m alone walking around the neighborhood and there’s a dog loose in a yard, I’ll likely speed by the house hoping the dog doesn’t chase me. I’ve had a dog start following me a couple of times, but the owner saw it and came to the rescue.
It’s just not outside dogs I’m afraid of. Inside pets, such as small dogs and cats, scare me too. I just don’t like animals crawling on me or rubbing up against me. I don’t like that I can’t get away from them. Some of my relatives have dogs. When I go to their houses for family gatherings, I have to very vigilant of my surroundings at all times because when I visit other people’s houses, I’m usually in my manual chair which means I can’t myself if a dog would jump on me. I know that my sister and her future husband are planning to get a dog someday, so it’s something I’ll have to get used to.
Years ago, my sister and I each had a rabbit. They were kept in the garage and we played with them outside. With some practice, I got to the point where I was able to hold my rabbit on my lap and pet it for a few minutes. Even then, someone had to be right there in case the rabbit started moving or I got spastic (jumpy).
Many people have suggested that I look into getting a service dog. While I like the of having a companion and essentially being a “mom” to a living being, I don’t foresee myself getting a dog anytime in the near future. Aside from my fear of them, pets are a lot of work. I’m not sure that I’d want to share the time I have people assisting me with my cares with an animal.
Animals are great for some people, but for me, they cause anxiety. Maybe down the road, my feelings toward animals, but for now, I avoid animals whenever possible!
By Stacy Ellingen, 2016-11-09
Often times I get asked if I could have one ability that I don’t have, what would it be. Many people are surprised by my response. Sure, I’d love to walk, feed myself, take care of myself, and be able to do things like drive, but the one ability I’d love to have is to speak clearly. Most people don’t understand the impact that verbal interaction has in today’s world.
Many times people think I have a cognitive disability just because I’m in a wheelchair and can’t speak clearly. I’ve had many different augmentative communication devices over the years. Many people with speech impairments use communication devices very effectively, but, admittedly, I’ve never been one of those people. Sure, I used one for classes throughout my schooling, and I still have one for things such as presentations and events where I have to speak to strangers. I don’t use it for day-to-day communication though. There are a few reasons for this. One is because, although devices have become much more compact, having it mounted to my chair is cumbersome (I can’t pull up to my computer desk or any table with the mount on). Secondly, and probably the main reason is that speech programs take a lot of time to learn how to effectively use. Many people compare it to learning a second language. Honestly, that concept has never appealed to me. I’ve learned how to program buttons on my device for what I need to say during certain events (such as conferences and classes), but I find faster ways to spontaneously communicate. I use the speech I do have and lots of gestures. I speak in vowel sounds. For example, my sister’s name is Stephanie. I call her “et-en-nie.” It takes awhile to get used to, but if people are around me enough, they usually catch on pretty fast. If family or friends can’t understand me, they ask me yes or no questions, or I type it on the cell phone. It may take a little while, but eventually I’ll get my point across.
Without even realizing it people judge other people. We all do-it’s a normal human tendency. I’ve encountered some pretty rude people in my life. I’ve been stared and pointed at countless times in my life. Depending on where I am and who I’m with, I usually just kind of ignore it. Sometimes, when I’m with my parents or sister, they’ll say something to the person, but staring and pointing doesn’t bother me much anymore. When I was younger and was in school, kids would tease me. Kids would call me “retard” and say things that did hurt my feelings, but I learned to brush it off. Kids and adults still occasionally tease me today, but I’ve learned to take it in stride and try to overcome their negativity.
Probably what bugs me most is when people treat me like I’m deaf or I’m a baby. People talk to me in real high-pitched loud voice. I’ve gotten pats on my head, pinches on my cheeks, and even kisses on my cheeks multiple times. Again depending on where I am and who I’m with, I usually just kind of blow it off. Sometimes, if I’m with family or close friends, they’ll usually try to explain that I understand everything they say, but sometimes no matter how many times people try tell them, they still do it. Years ago, we had this elderly lady in church who came up to me every Sunday, talked to me really loud, and kissed me on the cheek. It never failed. After awhile, I just got used to it. I’ve also had people insist on giving me things such as stuffed animals and stickers when I’m out in public. I understand when people do these kinds of things that they’re trying to be nice and aren’t trying to be hurtful. That said, it does hurt inside and it’s really embarrassing—especially when out with my friends. Most of my friends are used to it now, and we just laugh it off, but it’s still embarrassing!
I realize people have misconceptions because I’m in a power wheelchair and can’t talk. I also know that I should use my communication device more to avoid some of the misconceptions, but, at the same time, today’s society should be used to differences. Whether the person has a disability or not, treat them as normal as possible. If you have a question, don’t be afraid to ask. The person with the disability would most likely have you ask it rather then having the wrong assumption be made. Don’t be afraid to say hi—- it’ll make things a lot less awkward for both of you!
Though things are improving daily for people with disabilities, some people will never fully understand that we have the capabilities to lead fairly normal lives. We, as people with disabilities, have an ongoing challenge to prove to the world that we can lead successful lives!
By Stacy Ellingen, 2016-10-07
No matter how many years apart you are, how many kids there are, or how close of a family you have, if you have a brother or sister, there is going to be some amount of sibling rivalry. Having a child who has special needs in a family doesn’t change that. As I’ve mentioned in previous entries, I have a younger sister, Stephanie. We are four years apart.
When we were growing up, we fought and got in trouble just like other sisters would. I’d pull her hair and run over her toes with my power chair, and she’d disengage my chair so I couldn’t move it and move things out of my reach! Like all kids, Steph stole my clothes and used to tell minor fibs to our parents, and I would rat her out. I wasn’t an angel either. I’d get in trouble for something, try to blame it on her, and sometimes mom and dad would believe me!
When children are growing up with a sibling who has some sort of disability, it may appear that the parents give more attention to the brother or sister with special needs. It appears that way because a sibling with the disability may need some extra assistance with various tasks. Though at times, it’s hard, the developmentally typical child will realize that just because mom and dad has to spend more time helping her brother or sister, it doesn’t mean that they love them more. It’s realized that the extra attention that is given to the child who has special needs isn’t necessarily wanted, but might be necessary. Steph had to do a lot of stuff on her own because our parents had to take care of me. An example I remember is when she was in 6th grade, she went to Washington D.C. for chorus. It was over her birthday, and my mom couldn’t go along because she had to stay and take care of me.
The difference in adult attention is not the only factor that affects sibling relationships. The typical child may have to deal with issues and do some things that a “normal” brother or sister will never have to. From going all around a building to find an accessible entrance to dealing with people who stare or treat their sibling wrong, the typical child adapts to a different lifestyle. At times, it’s not easy, but it’s part of life for the family. Steph also has had to explain my disability to her friends as well as defend me from people who make fun of me. She also does some of my personal cares such as feeding me without even thinking twice about it. Little ways of helping me have become automatic to her.
For the sister or brother with a disability, it’s not always easy either. Watching their “normal” brother or sister accomplish things that they know they will never be able to do can be difficult. When we were younger, it were things such as watching her playing in a soccer game, to doing simple chores around the house, to getting her drivers license and dating, that were hard to witness knowing I’ll probably experience those very normal things.
Over the last few years, as we’ve gotten older, our relationship has changed. Much to no surprise, after attending hundreds of my therapy sessions when she was young, Steph became an occupational therapist. She often tries to help me by suggesting some therapy techniques to make life easier for me. Admittedly, being the older sister, I often have a hard time taking her advice seriously even though I know she’s right. Steph too has to remind herself that she needs to be my sister first rather than a therapist. We’re getting better at finding a happy medium.
Recently, we’ve entered a new phase of life as Steph became engaged to a wonderful man. As one would guess, this milestone isn’t the easiest for me to accept. Don’t get me wrong, her fiancé is great and I’ve come to love him; it’s just that seeing my sister in love makes me wish it’d happen to me. It’s not easy, but I’m trying to experience happiness through her eyes. I do my best to be as supportive as I can, but Steph understands why at times things can be hard for me emotionally.
I’m well aware too that it takes a special guy to marry someone who has a sister with a significant disability. Early on, I’m sure Steph had to explain my circumstances to him. Again, it’s not an easy conversation to have, but Steph did it because she loves me and wants me a part of her life forever. Her fiancé has accepted and embraced the situation which I’m forever grateful for.
Steph and I have started talking about the future—when our parents are no longer able to assist me with things. I never ever want to be a burden to her life (and that’s something I’ll always be very cautious about), but Steph wants to be there for me when that time comes. Down the road, I’ll likely move closer to her, so she can assist me. “That’s what family is for,” she says.
I know having a sibling with a disability isn’t always easy. Steph has sacrificed a lot for me, but she says it has made her stronger. Words can’t begin to express how blessed I am to not only have her as my little sister, but also a best friend!