Just Keep Swimming

 Editor’s note: Support animals are one of the most important accessibility tools that people with differences utilize. Though many assume the only working animals for people with disabilities are dogs for the visually impaired, today all kinds of animals are being trained to accommodate difference. Dogs are now providing service to people with all kinds of conditions, from seizures, to food allergies, to dementia and Alzheimer’s disease. Today we have the story of Elvis, a mobility support service dog, who wrote in to tell us a little bit about how he helps his human thrive. Think you or someone you love might benefit from a service animal? For general information about service animals, check out the Americans with Disabilities Act resource page here. You can also check out this great article, which provides a list of organizations that train dogs for specific conditions. Most of these organizations can provide service animals for free or for very low cost to people who need them. You can apply for a service dog via various organizations, including The Guardian AngelsService Dogs of America, and Paws with a Cause. See this website for a list of frequently asked questions about service animals and the law, according to the Americans with Disabilities Act. You can check out The Service Dog project, which raised Elvisright here. Interested in training your dog to be a service dog? You can find more information here. For more information on types of services dogs and how they work click here.

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mage Description: Elvis and his human in their hospital bed.

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My name is Elvis and I’m a service dog. 

My human came to the Boston from England for medical treatment in 2016. She expected to be here for no more than eight weeks; now, over three years later, she lives full-time in Boston.  She has a complex medical history including dystonia/muscle spasticity, which means that she walks differently than most people. Until I came into her life, she used a wheelchair or crutches for movement. 

 I was born and raised at the Service Dog Project in Ipswich, MA. I was trained as a mobility service dog and was donated to my human in May 2018. I help her walk, balance, and navigate the world. Since I came into her life she has been able to put her crutches and wheelchair away for the most part, although when she does need her wheelchair I am also trained to pull that! She always tells me how much freedom I have given her. Before me she avoided a lot of things. When she came to a set of steps, she was frightened, knowing she would likely fall. When she slipped and stumbled, she often found herself stuck on the floor with her crutches, unable to get up.

Since I came into her life, we take on steps without a doubt. I stop numerous falls, supporting her when she stumbles. If I am unable to stop her from falling, no matter how hard I try, I am right there to get her off the floor. My human often tells me that it is the little moments that make her smile every day. These are simple freedoms like knowing she can step up onto the curb while walking down the street, or grab something off a shelf without losing her balance. I am always right by her side, and if she loses her balance, I’m there to catch her. When she becomes very dizzy or ends up passing out, I am there to support her. I know my human inside and out. I know the days we can play around and the days when I need to be more focused on keeping her safe. I brace to keep her upright, lay under her legs when she is unconscious, and do all I can to support her. I am basically a moving crutch with four legs and a huge heart!

We have been through numerous hospital admissions, surgeries, and emergency room trips together. No matter what situation she puts me in, I am always there to help her navigate the world despite her chronic medical conditions. We have ups and downs, but stick together. For instance, at the beginning of this year my human was really not well at all. Through a long hospital stay, I made sure I slept at the end of her bed every night. I helped her take her first steps during the really tough moments after her surgeries. While I was trained specifically for mobility, during the time we have been a team, I have learned how to read her other medical signals. I am now very in tune with my human. I tend to notice when she is feeling off before she does. Sometimes I can tell that her blood sugar is off, or that she is having a bad mobility day, or that her cardiac issues are acting up. I make sure to tell her when things are off. In this way, I have saved her from getting very sick or hurt multiple times. 

I’m not sure people always realize how important I am to my human and how much I have changed her life. I have prevented multiple emergency room visits, concussions, and injuries.  Perhaps even more important, I have allowed my human to grow so much more confident about living life despite her medical challenges. I have helped remind her that she is so much more than her medical conditions, no matter what they try throwing at her. Looking back at our time together, it is incredible seeing all the achievements she has accomplished with me by her side. I also know that her friends and family are so grateful that my human can live life independently now that she has me. She can have the life she wants, because she is never alone. I always keep an eye on her. 

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Image Description: Elvis and his human in the hospital. Elvis is wearing scrubs and his human is smiling broadly.

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Balancing school, health, an internship, and life can seem quite challenging at times, but we embrace every moment. We made a promise to ourselves to live life to the fullest, make the best memories, and pursue our goals without looking back. My human also has some incredible doctors that helped inspire her passion to work in medicine. (Not that she needed much pushing! She has been known to take her finals in the hospital the night before surgery.) She just loves to help people, especially children, in any way she can. In fact, we both love volunteering with kids. Before me, she couldn’t do this volunteer work very often because of her mobility challenges. Now, we do it together all the time. 

I would be lying if I said there weren't any moments where my human’s health scares us! There are definitely tough days, especially during hospital stays. Through it all, however, she has a determination that never seems to fade. She says that she couldn’t do it without me or the support system she has built. We help her “just keep swimming”, a saying that she holds on to in those tough moments. We always keep swimming, no matter what life throws at us, together. There’s another saying she says a lot, which I like. When people doubt her ability to pursue her goals, or try to put limits on her, she says: “Just because my path is different, doesn’t mean I am lost.” We walk through the world together, and that might seem different to some people, but we are definitely not lost. While we never expected our journey to look like this, we know we are exactly where we need to be. 

I am Service Dog Elvis and I have helped give my human her life back. You can follow my adventures on Instagram @servicedogelvis and my trainers, The Service Dog Project, at @servicedogproject!

Meet Karli: Representing Difference On Children's TV

How important is it for children to see representations of themselves on television? Numerous studies have shown that children benefit from encountering media in which they can see people who look and sound like they do, though much of the research on this topic is regarding representations of race and gender difference. More and more, however, there is recognition that children with disabilities and other forms of difference need representation too. Sesame Street has historically done a wonderful job of representing all kinds of children and families on their show. In 2017, the program made new strides in this direction, debuting Julia, a character on the autism spectrum. In the last year, the show has introduced Julia's family (and her dog!). Julia is part of Sesame Workshop's initiative to See Amazing in All Children. The program offers resources and information for families who are affected by autism. Educational psychologist Dr. Jeannette Betancourt, who leads the Sesame Workshop's social impact initiative, said that Julia is intended to help viewers see the similarities between all families, no matter their situation, as well as learn about the autism spectrum.

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Now, Sesame Workshop has introduced Karli, a new character whose parents are recovering from addiction. Recognizing that more and more of our nation's children are affected by the addictions of their caretakers and families, Sesame Workshop has decided to show its viewers the challenges and successes experienced by Karli and her family. One of the best part of the above segment, which introduced Karli, is that it affirms the idea that addiction is a sickness which requires treatment. This will help children understand that their parents have not abandoned them by seeking help, but are in fact getting help in order to be better parents. The segment also emphasizes the fact that parents who need to leave their children for addiction treatment are faced with a terribly painful decision. As Salia says in the segment above, though her parents were only away from her in treatment for sixty days, to her that time felt like sixty years. As Salia's dad reminds her, it felt terribly long when he was away from her too. He cried because he didn't want to leave her, but he went to rehab because he wanted to be a better parent.

Karli's introduction to Sesame Street represents an important step for representation of children who are affected by addiction and other mental health conditions. We believe that this character will not only help children affected by addiction realize that they are not alone, but help children and their parents have important conversations about respecting difference and finding the common ground that we all share.

For more information about how representation affects children, check out the Tuft's University Children's Television Project.

Art About Difference

Art is a way to express feelings. While drawing I am happy, often angry, sometimes endlessly sad or even destroyed. Sometimes I feel all of these emotions all at the same time.


My paintings are an entrance. I want the viewer to become a part of the world of a person whose life is influenced by autism.

That brings me straight to a word "autism." If you look at my pictures, then you may make assumption that I am autistic myself. In fact, it is my son who has this particularity. When he was only a few months old, I realized from his rhythmic movements and twitching that something was different about him. I told my husband about it and we watched him for a while. The symptoms were worse on some days and better on others. Over time, however, unbridled tantrums, screaming attacks, and self-injuring behaviors overwhelmed us. Sometimes our son hit his head so hard against the floors and walls that he was green and blue. At night he had screaming attacks and roared so loudly that our neighbors complained to us and knocked against the walls.

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Image Description: One of Desi's paintings, which features a number of children's faces, making various subtle facial expressions.

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At first I was angry and sad, because I knew there was no cure.  I was desperate and completely at the end of my rope. Then I took notes and began to paint and sculpt together with my son. We changed our life in small steps and art as well as reading became an important part of this change. My husband and I practiced accepting him as he is, with all his edges.  Our painting together spurred me to cope with all my emotions. My son can not bear it when I cry, scream or laugh loudly. So art is the best way to explore all the feelings I have.

 

My husband and I practiced accepting our son as he is, with all his edges.

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Image Description: A mixed-media piece by Desi, which features four children's faces. One of the child's heads is filled with scraps of paper which look like theyare ripped from a diary.

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An "autist" does not differ externally from a "normal" person. He stands out only because of his behavior. In the past, I was easily annoyed by the looks of other parents, when they observed my son's symptomatic behavior. Today I am more relaxed. This is exactly what I try to show in my pictures. I don't shy away from showing the pain and the anger that I sometimes feel when my child is violently spinning and can not be calmed down. I practice with him every day and we do rituals that give him security. Sometimes I struggle to cope with this pressure. My paintings help me. I publish my works on the internet to reach people all over the world who may be affected by similar issues or in a similar situation. My paintings are also for those who have never before had experience with an autistic person. I'm convinced that you will find yourself in my art.

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Image Description: A drawing of Desi's, which features images of the same child who features in many of her artworks.

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Medical research learns more about autism every day. Therapies are an important step, but above all I've found that the cohesion of the family is what helps the most. Without my husband, I might have failed in the experience of raising a child with autism. Without my painting, I would have died emotionally.

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Image Description: Self-portrait by Desi, which features a picture of her with scratch marks super-imposed upon on. This piece is about the self-injurious behaviors which Desi often witnesses her son perform.

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I think it's important to find a balance. Many parents of autistic children forget about themselves and spend all their time worrying about their children. For them I hope that, despite all the challenges, they can remember to take care of themselves too. Most of all, I hope that others remember that they are not alone.

You can contact or follow Desi's work at @eerised_art.

How The ADA Helped Me

My name is Jane and I was born in Chicago. Soon after my birth, doctors realized I had cerebral palsy.  My CP resulted in physical and cognitive deficits. I have right arm weakness which prohibits me from doing two-handed tasks. My attention deficits, slower processing speed, and problem-solving skills affect my academic and vocational performance if accommodations are not granted. 

For these reasons, the Americans With Disabilities Act (ADA) has played a crucial role in my education. Because of the ADA, I was able to graduate from high school, college, and graduate school. Having my CP-related deficits did not make excelling easy. I had to work twice as hard as the typical student without a learning disability and I had to be pretty resourceful to get around my one-handedness in school and graduate training.  

The ADA insured that reasonable accommodations would be made during my entire schooling. As I write, you will see what is meant by “reasonable accommodations.” For me, it began when I began experiencing academic difficulties in fourth grade. After receiving a neuropsychological evaluation that revealed my deficits, I started receiving accommodations. The accommodations included receiving extended time on exams and projects, getting the help of a peer note-taker, and getting access to class material prior to the start of each semester. I needed extended time because my processing of information was slow, a peer note-taker because I was a slow writer, and access to class material would allow me to study in the summer so I would not lag behind the class because of my slow reading.  The accommodations leveled the playing field for me so that I could demonstrate my intelligence and not be hindered by slow processing and reading.  

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Image Description: A group of friends watch as one young man, who utilizes a wheelchair, shares an image on his phone with them.

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As I continued my education, my accommodations changed as the program demands changed.  When I entered graduate school to get my masters in Psychology, I needed accommodations that would serve me both in class and in clinic practicums. In class, I continued to receive extended time for exams and a peer note-taker. For clinic practicums, I now required audio recording privileges to take home after therapy sessions. Students in my program were generally not permitted to take home audio recordings of their patient sessions.  The Office of Students with Disabilities (which is responsible for ADA implementation in my program) arranged for special permission for me to take home the recordings of my patients so I could fill in the gaps of my therapy notes that occurred because of my slower processing speed and working memory deficits. Physically, I had to learn compensatory strategies to manipulate testing materials. An occupational therapist taught me ways to maneuver materials using one hand. She taught me to use therapy “sticky mats” to keep things in place and ways to grab materials in a seamless manner during sessions with clients. The occupational therapist also suggested using a suitcase with wheels to carry all my books and materials to the clinic. Again, the faculty recognized by unusual changes in procedures as “reasonable accommodations” since they were protections offered by the ADA. 

The ADA applies to all individuals with disabilities in all levels of education and employment. According to the United States Department of Justice Civil Rights Division on the ADA:

“This law is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life -- to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 -- the ADA is an ‘equal opportunity’ law for people with disabilities.”

The faculty members in my program were unaware of how the ADA applied to students in graduate school. Most assumed that the ADA only applies to students in secondary undergraduate programs. Their incorrect understanding of the law and reluctance to understand my eligibility for accommodations in graduate school prompted me to seek the advice of legal council. With the help of an attorney advocating for my rights, the faculty began to comply and grant my accommodations. The main reason colleges have a center for students with disabilities is because of the ADA for students. Unfortunately, in my case, my school’s Center for Students with Disabilities was unable to be helpful. Thankfully, the law is there to protect people in my position. 

I am now working at the Children’s Hospital of Philadelphia. I continue to use the same accommodations that I used in graduate school in my work today.