When Our Disabilities Jump-Started a Friendship Between My Housemate and Me

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Dorming as a college freshman was a disaster, so I opted to live in an on-campus apartment for my sophomore year. As soon as I received contact information for my five housemates, I shamelessly Facebook stalked them, eager to make guesses about which one might wind up being my closest friend.

Lizzie’s favorite color was red, she loved to read and write and she had mild cerebral palsy. Instantly, I was intrigued. There were few things I loved more than writing stories and delving into books, and I hoped someone with mild cerebral palsy wouldn’t be alarmed by a roommate who was totally blind.

My initial email was almost certainly full of screaming all-caps and thrilled exclamation points. I asked Lizzie about her favorite books, her stories in progress, her plans for the upcoming year. Lizzie’s reply, I’m sure, was calm and collected, meticulously addressing each of my questions and comments. Neither of us mentioned our disabilities; Facebook made them obvious, and we each must have assumed that the other already knew.

When we met in person, Lizzie and I quickly realized that our first set of emails would mirror our friendship to a tee. I was the loud, over-the-top half of our duo, forever insisting that we go downtown on the weekends, host Uno marathons, ditch our homework in favor of reading young adult novels aloud together and gab endlessly over mochas and chocolate chip cookies at the coffee shop. Lizzie, on the other hand, was practical, responsible and levelheaded. At the start of each quarter, she’d check our progress toward graduation and sign us both up for the appropriate classes. She dispensed medicine when I got sick, reminded me to occasionally eat a square meal (which she would cook) and prodded me to give my homework more than passing attempts. While I dragged Lizzie to the mall or to the dining hall with our friends, she taught me how to do laundry, clean toilets and add honey to my peanut butter sandwiches.

Caitlin Hernandez, left, with her college housemate, Lizzie.
Caitlin Hernandez, left, with her college housemate, Lizzie.

Our personalities couldn’t have been more different. Lizzie would affectionately tease me about my always-sunny disposition, my optimistic, giddy enthusiasm, my tendencies to giggle and hug and gleefully jump up and down whenever anything remotely exciting happened. I, for my part, loved Lizzie’s snarky sarcasm, her wry sense of humor and her candid honesty, which bordered on bluntness around the people she knew well. We never failed to amuse one another, perhaps because our outlooks on life were so unique.

Our remarkably reciprocal friendship would have been noteworthy in and of itself, but our disability-related interdependence deepened our closeness even more. In my experience, a singular bond often exists between two friends who are disabled in different ways. Asking for help — and needing that help in the first place — feels exponentially more comfortable when your friend is in the same boat, and you are able to help them in turn. So it was with Lizzie and me. She read aloud assignments which weren’t Brailled, navigated inaccessible web sites and oriented me to different locations on campus. I learned about her leg braces, about how Botox injections eased the spasticity of her leg muscles, about how she did things differently when one hand worked significantly better than the other. If she fell, I helped her up; thankfully, we were around the same size, so standing behind her and hoisting her to her feet was easy.

Our matching dark hair, dark eyes and 5-foot-nothing heights, combined with our constant togetherness, caused more than one person to mistake us for sisters. We were regulars at the on-campus grocery store, where Lizzie would expertly steer me through the tight mazes of shelves as I shouldered our giant tote bags. Whenever we walked anywhere, it was hand-in-hand, Lizzie leading the way while I braced her on the rickety staircases.

When I first met Lizzie, I naively assumed that we would connect over being two of the very few physically disabled students on our university campus. But while my blindness was immediately visible in the shape of my Braille and cane, Lizzie could hide her cerebral palsy, if she chose to do so. My blindness — and my ongoing quest to form an alliance with it — was something I openly addressed with others out of necessity. Lizzie, in many ways, had already accepted her disability and achieved independence; yet, sharing that facet of her identity, and finding and expressing pride in it, was still new to her.

Our friendship was rooted as much in my blindness and her cerebral palsy as in her family’s spaghetti recipe and my constant requests to walk to the nearby, on-campus café to buy tubs of Ben and Jerry’s ice cream. We shared as much about our disabilities as we did about homework and crushes and the stories in our heads. Disability may have jump-started our friendship, but it was everything else — our similarities as much as our differences — that continued it.

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5 Things I’d Like to Tell New Acquaintances About Epilepsy

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alexis Here are five things I wish I could tell people I meet about my epilepsy:

1. I can’t swallow my tongue.

Don’t feel bad — even I grew up believing I could swallow my own tongue and that was why you were suppose to gently smack me on the side of my face. Wrong. People with epilepsy can bite our lips and tongues while having a seizure, but no we can’t swallow them.

2. Don’t be afraid.

There is nothing to be afraid of. Having epilepsy is a challenge, but it only makes me stronger as an individual. Instead of avoiding me, learn what to do if I happen to have a seizure when we’re together. Catch me, time the seizure, put me on my side, to name a few. And most important, comfort me and talk me through it. In my case, if the seizure happens to last more than a minute or two, call 911.

3. I’m just like you.

Having epilepsy doesn’t make me any different from a person sitting next to you who doesn’t have it. If you think about it, we all have something — just because mine is epilepsy doesn’t make me any more or less different, unique, strong, etc., from the kid next to me fighting cancer. Or the girl across the street who has cystic fibrosis. We’re all strong, unique and beautiful in our own ways — just fighting a different battle. Epilepsy is a brain disease; some people know the cause of theirs and some don’t. I’m 22, and doctors still haven’t found a cause for my epilepsy. But in my case, it doesn’t keep me from living a normal, everyday life. I’m just like you.

4. Learn my warning signs.

Some people who live with epilepsy say they can sense when they’re getting ready to have a seizure. Their arm will start to shake or they get a headache, become dizzy, etc. I can never sense when I feel one coming on. Sometimes, heat is a big trigger for my epilepsy, and I let people know this. The best thing to do when you’re brand new in the life of someone with epilepsy is pay attention. If you see them acting strange, getting dizzy, etc., stay close by and be prepared.

5. Just be my friend and love me through it.

Living with epilepsy is hard enough. Having to fight for what we want is hard enough. Having to worry about medication, insurance and for some people more than that… is hard enough. You may not see it, but we feel pain. The main thing people living with epilepsy want from anyone in their lives — not just new people coming in it — is to just be our friend and love us through it. Support us and tell us it’s gonna be OK. We just want to know you’re going to be there through the good seizure-free days and the bad days too.

Bonus: If the new person in your life is an employer, here’s my advice:

Starting a new job can overwhelming, exciting, scary all at the same time — for anyone. But living with epilepsy and getting a job can be frightening because we wonder, “What happens if they find out I have epilepsy? Will they hire me? Will they fire me if I don’t tell them? Will they know what to do if I have a seizure? Will they still keep me if I have a seizure?” I suggest letting your employer know you have epilepsy. Ask questions and make sure you get answers.

Do you have a story about your experience with epilepsy? Please send it [email protected] include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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5 Signs You May Have Found a Great Child Therapist

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Our family was blessed to have an amazing therapist for almost five years. Then in January of this year, she told us she was moving her practice out of the area. We could stay with her, but we’d have to drive an hour and a half each way if there happened to be no traffic. Before she left, she gave us several names of counselors we could contact. In February, I called those numbers and either received no response or was told they didn’t take our insurance. Since my daughter was so stable at the time, we decided to stop our search for awhile.

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Little by little my husband and I saw the signs in instability creep back in. Then in August, the dam broke. We saw several maladaptive behaviors emerge in ways that we hadn’t experienced in a long time.

I tried looking on our insurance’s website for a qualified therapist but came up dry. Finally, a former high school buddy of mine who follows my Facebook page reached out to me privately. She said that she was an insurance broker and wanted to help me. I called her the next day. Within minutes she had pulled up a list of over 80 professionals who practice in or near my home town. She just happened to mention that one name stood out to her. It was a therapist named Miss A.

Later that day I called Miss A and a few other therapists to get a feel for who might be a good fit. Miss A called me back a few hours later. She explained she wasn’t able to see me until the end of the month. I hesitantly booked an appointment for the last Saturday in August.

A week before our appointment, Miss A. emailed me to tell me she’d read over my daughter’s medical and educational history. She was concerned based on the intensity of my child’s previous hospitalizations she wouldn’t be a good fit. She only saw patients once a week and felt like my daughter needed more. I assured her she had a lot of supports at school, which included two separate counselors. Our family decided she needed a private therapist for additional support. Once Miss A heard this, she decided to move forward.

Finally, the big day arrived. After our appointment, I can truly say my husband and I are cautiously optimistic Miss A will be a good fit for our daughter. The appointment with our daughter’s new therapist was actually just part of the interview process. We’d been in contact via email several times that week. Miss A really tried to get a flavor for my daughter’s unique and challenging needs. Knowing what I know now, I can confidently say there are a few signs all parents should look for when searching for a child therapist.

1. A qualified therapist will call any previous therapists and professionals to confer with them. 

Miss A asked me to sign releases of information for my daughter’s private therapist, psychiatrist and school staff. Then she took the time to contact them. I’ve had several instances where professionals have asked for releases, but never took the time to contact those who know our story.

2. She has names and numbers of other professionals you can add to your child’s team. 

My husband and I have been talking about getting our daughter a more formal autism diagnosis. This will hopefully make more services available to her. After telling Miss A about this, she produced a list of people who took our insurance. Guess what I’ll be doing tomorrow morning?

3. A highly qualified therapist will provide practical solutions based on your child’s unique needs. 

When we told Miss A my daughter was taking things that don’t belong to her, she suggested some useful tips. One of which I was already doing. (Telling my daughter to say, “I’m struggling” when she feels tempted to take something.)  She said, “Consequences for impulsive behavior will not work with your child. Instead you need to have a plan to prevent this behavior.”

4. You hear the phrase, “I will let your child lead our sessions. She’ll choose what we play with.”

Miss A told my husband and I all of the different play options that were available to her. She definitely knows the direction she’s going in, but she wants to make it a fun experience for my daughter.

5. As you leave, your child’s therapist tells you she can’t wait to meet your child next week. 

It gave me and my husband great comfort hearing this. Just knowing a stranger who knows my child’s challenges still wants to take her on as a client gives me peace of mind. I’m entrusting this professional with my child. It could either be a struggle to get her to the therapist each week or this could be the start of a wonderful patient/therapist relationship. If it’s not a good fit we could see more instability. If it’s a great fit, this could help my child grow into a mature young lady. After seeing these signs, I’m hopeful this will work out.

Follow this journey on Raising a Drama Queen and like Cate’s page on Facebook

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What I Wish My Boyfriend’s Parents Knew About Me and My Disability

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My boyfriend and I have been together for about five years. He is able-bodied, and I walk with canes. He’s never been phased by my cerebral palsy (CP) and actually seems to enjoy assisting me throughout our life together, such as carrying my laundry, tying my shoes when there’s no place for me to sit down to tie them myself or dreaming up ways to make activities accessible for the two of us — something that I appreciate and feel is quite nice.

Not wanting it to ever seem like he may have been hiding it, my boyfriend was very up front with his parents about my moderate cerebral palsy after our first few dates. I’m not sure why, but they were immediately devastated that their son would choose to date someone with such a permanent, restricting condition, which they assumed could only ever negatively affect his life. Although we have met a few times over the years, for the most part, I have been kept on the outside of their very close family. They refused to accept or acknowledge my being in their son’s life. I’ve faced discrimination for my disability before, but never had it held in such a constant position, dictating a large aspect of my life.

Only recently have they begun to come around to the idea of our relationship and allowing me to participate in family activities. I’ve only ever wanted them to get to know me as more than my CP. Simply put, here are 12 things I wish they understood about me:

Jessica Geboers the mighty.2-001

1. I’m in love with their son; he’s my best friend.

2. A disability is nothing to be ashamed of, but it’s also not optional, so I have to live my life.

3. My disability is a part of me, but in a lot of ways, I am just like everyone else, and thus, deserve to be treated as such.

4. But the things that make me different (I’ll never dispute the fact that I am different) have also made me a stronger and a more open-minded person with a unique perspective.

5. I will never be completely bedridden and dependent.

6. My having a disability will not get in the way of their son’s career.

7. My disability is not genetic; I have just as much chance of birthing a child with disabilities as anyone else.

8. If they have questions about my condition, or me in general, they should just ask me.

9. How they have treated us, as well as the at times outrageous assumptions they have made about my abilities, or lack thereof, have hurt me in ways I never expected.

10. However, I am not going away, so we should just work on, at the very least, coexisting.

11. I love the love their family has for each other, and all I’ve ever really wanted is to be a part of it.

12. They have raised two smart, great men with an endless ability for love and compassion, which should make them proud.

I came face-to-face with my boyfriend’s parents this weekend for the first time in about four years, since I was a plus-one at a retreat thrown by his family’s business, with the intention of reintroducing me to his parents. Although they were not the most welcoming, we’ve made progress in that they politely tolerated my presence. Not wanting to rock the boat too soon, I didn’t approach them about these things or their concerns — speaking for myself for the first time — but I’m not giving up. I’ll respectfully bide my time at family events until, hopefully one day soon, we are comfortable enough with each other to have an open and honest conversation.

This is the only thing I can think to do. Fighting and rudeness would only give them a real reason to disapprove of me. And obviously, hiding didn’t work because you can’t get used to someone you never see. I hope my dream of being accepted will come true with time.

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When My Son Answered a Group of Kids Asking Questions About My Scars

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My son is 3 years old and he “gets” it. He understands that burns, scars or physical differences don’t make a person “bad” or “weird.” It just makes them different. He started noticing my scars when he was about 1 and a half. He would gently run his finger along the dark brown scar on my left cheek and say, “Ouchie.” And I’d say, “Yes, it was an ouchie, but it’s all better now,” and he’d move on to something else.

I knew there’d come a time when he’d notice someone else notice my physical differences. I hadn’t really prepared myself for what I’d say or do, so when the time came I just handled it in the moment. A curious little girl (about 6 years old) kept smiling at me the park. I’d smile back and say, “Hello!” Finally, after a few exchanges, she walked over and bluntly asked, “What happened to you? What are those scars on you?” I smiled and explained that I’d been burned, but my scars were all healed up and I was all better now. She then proceeded to ask me, “But what happened?”

So, I told her I’d had an accident. She insisted on getting a more detailed answer, following up with a confused, “A car accident?” By this time a group of kids had gathered around, some shyly listening, while others were touching my arms as I held them out. My son was within earshot when I said, “Yes, a car accident.” The little girl said, “Ohhhh, there must’ve been fire.” And I responded with a simple “Yes.” Satisfied with my answer they continued to laugh and chat with me while we played a game of tag.

Anytime I encounter children who have questions about my scars, I am happy to answer them. I’d much rather have a child ask me openly than point and stare and never get the opportunity to interact with me. In my experience, parents have scolded their children or hurried them along when they’ve commented on my skin or started asking me a question. And I always tell parents it’s OK. I often have to convince them that I’m open to share, and I encourage them to let their children talk to me so that I can show them that I’m not “scary” or “strange.” Rather, I’m a person with feelings and a story.

My experience has allowed me to teach my son something very special, and that’s compassion. I realized that he “got it” when we were at (yet another) park playing. In this instance, a group of kids joined our usual game of “monster” and they began to ask questions. But this time before I could get a word out, my son said, “It’s just burns, guys! From a car accident.” A part of me giggled as he said it so matter-of-factly. I was proud of him. I in no way expected him to assume the responsibility of answering for me or sticking up for me, but he did. It was a complete shock, but I am proud nonetheless. He didn’t see it as a big deal or as something that should stop their fun, so he addressed it, made eye contact to confirm they were OK with it and then they happily moved on. Who knew?

Still another part of me worried about how his accepted version of a car accident might confuse him when he gets older and learns the truth. For now, I’m OK with it. He’d overheard me tell another child that my burns were a result of a car accident, so that’s how he made sense of it all. It’s totally appropriate. When he gets older, we’ll have a more detailed conversation about the facts and we’ll process it together. Until then, if he wants to tell other children that my scars are from a car accident and there’s no need to be afraid of me, I’m OK with it. I’m thankful he and I get to be both the teacher and the student on this journey, and I couldn’t be more proud to be his mom.

Follow this journey on Burned Beauty.

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When a Movie Gave Us the Hope We Needed for Our Son With Down Syndrome

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On November 15, 2014, our lives were forever changed. They changed not just because our first child, Kayeden, was born, but that our first child was born with Down syndrome. We chose not to have genetic testing done, so the diagnosis came as a complete shock. We had no idea what that meant for our son’s future and what new challenges were ahead.

We were given multiple books, websites, DVDs, you name it, to educate ourselves on Down syndrome. It was so much to take in and was extremely overwhelming. There was a huge part of us that was still in denial. This wasn’t what we’d imagined. This wasn’t how it was supposed to be. Our son has Down syndrome? Were the doctors sure?

Every time we looked at Kayeden, we didn’t see Down syndrome. All we saw was the most beautiful, perfect baby boy. It felt like we were living a dream. How was it possible that this perfect baby boy would grow up to have developmental delays? Would he ever live on his own? Go to college? Get married?

Shortly after Kayeden was born, my husband, Craig, and I heard that a movie, “Where Hope Grows,” was going to be playing at the Kansas City Film Fest where we live. It featured a young man (Produce) with Down syndrome who worked at a grocery store. We were curious what life might be like for Kayeden, so we wanted to see it. The night the movie came out, we all (Kayeden included) headed out. This was going to be Kayeden’s first movie.

After the movie was over, all we could do was smile. There was hope. Produce had a job, lived on his own and did everyday “normal” things just like everyone else. Also, David DeSanctis (the young man who played Produce) was acting, had to memorize lines and interacted with everyone just like any other actor would. It was so inspiring to see. “Where Hope Grows” gave us that last little bit of hope we needed to know that Kayeden’s life, and our lives, were going to be just fine. We knew it was going to be possible for Kayeden to do all the things David (and Produce) could do and even more.

When we were in the hospital, someone told us that all Kayeden needs is someone to believe in him. We can without a doubt, say that we truly do believe that Kayeden will be able to do anything that he wants to do. He will struggle just like any other person will, and he will succeed at anything he puts his heart into. We know this is what our lives were supposed to be like. We believe this was God’s plan all along. We can’t imagine life any other way. We have the perfect baby boy we’ve always dreamed of.

The Andersons: Craig, Emily and Kayeden

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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