6 Things You Probably Didn’t Know About Down Syndrome
6 Things You Probably Didn’t Know About Down Syndrome
Education starts with awareness. That’s why we’re taking the time to cover some of the disabilities in today’s society you may have heard of, but know surprisingly little about them. Our blog series starts with Down syndrome.
Read along as we cover some basic facts about this disability, it’s features, and risk factors.
6 Facts About Down Syndrome
What is Down syndrome, exactly? Get better acquainted with this genetic condition with these 5 helpful facts.Down syndrome is causedby extra copies of chromosome 21.
This extra chromosome may be partial or whole, and can lead to one of three different types of Down syndrome: Trisomy 21, Mosaic Down Syndrome or Translocation Down Syndrome.Trisomy 21 is the most common form of this condition.
Trisomy 21 occurs when three copies of chromosome occur instead of two. It accounts for 95% of cases. Mosaic Down Syndrome and Translocation Down Syndrome are much rarer, accounting for 4% and 1% of all cases.Symptoms can vary greatly from one case to another.
Down syndrome isn’t the same across the board. Cases vary from mild to severe. Symptoms may include some or all of the below:- Small Head
- Flattened Facial Features
- Eyes with An Upward Slant
- Ears of Small or Unusual Shape
- Short Neck
- Poor Muscle Tone
- Broad, Short Hands with a Single Palm Crease
- Small Hands and Feet
- Short Fingers
- Extreme Flexibility
- Short Stature
- Brushfield’s Spots
The life expectancy of individuals with Down syndrome has increased over the years.
Medical advancements have significantly increased the average lifespan of individuals with Down syndrome. In 1983, the average life expectancy was 25. In today’s society, the average lifespan is 60.Approximately one-fourth of U.S. families are impacted by this condition.
While the cause for Down syndrome is unknown, the risk increases with the mother’s age.It is the most common chromosomal condition in the U.S.
More than 400,000 individuals have Down syndrome in the U.S. with it occurring on average in 1 of every 691 babies born.Why Dreamscape Foundation is Talking About It
Here at Dreamscape Foundation, we work day in and day out to help individuals with disabilities acquire the tools, programs, and resources they need to live a full life. While our focus is primarily on visual impairments, we don’t view ourselves as a singular community. We understand that the demand for special needs stretches beyond are individual cause, and that change happens through education, understanding, and support. That’s why we want to take the extra step in informing our community of other common disabilities in order to help form a bridge of understanding and connection. If you’re currently seeking local Down syndrome resources in Florida, we encourage you to visit the Global Down Syndrome Foundation online. If you’re an individual looking to raise funds to meet specific needs for yourself or a loved one, talk to us. We collaborate with individuals and organizations to help provide essential resources for individuals with disabilities. « Previous Next »Interview with Josie Badger, Disability Rights Activist
Interview with Josie Badger, Disability Rights Activist
Josie Badger is a disability rights activist with muscle dystrophy who has worked all her life to empower others. She is driven to help youth leaders and to create new initiatives. Her hard work over the years paid off earning her Miss Wheelchair America in 2012. She has a myriad of accomplishments, and she has more dreams to come. Her greatest is to change how people perceive someone with a disability. To her leadership is most important and she wants to expand her goals to create more leaders, to create a way for others like her.
What are you up to these days? What projects are you involved in?
I find myself again in a state of transition but this one doesn’t have any toolkits or webinars. From the age of 18 to around age 30 I was still considered a “youth” and found much of my identity in peer support, working with other youth in supporting them during the transition into adulthood. What I believe was so successful about that work was the near peer mentoring, other young adults in leadership roles which allowed them to mentor youth slightly younger or less experienced than them. I knew how much it had personally changed my life and wanted to replicate similar programs for others. Those programs that I started during my 20s are still active and successful, although slightly different than when I created them. As an “adult” I felt that these programs would only be successful if youth continued to run them and that my original concepts for these programs could potentially keep them from growing and changing with the needs of society and today’s youth, so I handed them off to other young leaders.
Although I still miss that mentoring and program development, I have realized that my experience will allow me to help others develop similar programs. Pennsylvania was extremely progressive in youth leadership but many states have not caught up. Through my current position as the co-director of RAISE, I am able to work with other states on developing their own youth leadership programs. In addition to this transition in utilizing my passion and expertise, I am continuing to define what it means to be an “adult” with a disability. By going straight through my education from preschool through doctorate, I was able to prolong my “youthhood” until I was 30. Even though I had my own apartments and jobs, much of my identity was still in activities that were for young adults. Now, I am done with school, I have my own business, a house, and a husband. I’m still not sure exactly what that means for me and if I’m doing it right.
What does it mean to be a wife with nearly no physical ability and 24-hour care? Is adopting even a viable option? How would I care for a child? These are all questions I continue to wrestle with on a daily basis.
Where do you see yourself in five years? Ten?
Since my business works on contracts I am not sure what jobs I will have at that time. I am hoping to develop new youth development materials, potentially through vocational rehabilitation that can be implemented in Lawrence County and more rural regions. On a personal level, I hope to be able to build a house that is fully accessible to me. My husband and I are also looking at either fostering kids or adoption. Professionally, I would love to continue working on legislation and public policy. I love all of my jobs but that is an area that I hope to continue to learn and grow in.What makes you happiest in life?
I love to problem solve and brainstorm. As an individual with a disability, I think that this task is vital for survival. From learning how to change wardrobe between scenes in my high school play to figure out how to not lose my ventilator while skiing down a mountain in South Dakota, my life has relied on problem-solving. I love to be able to look at situations, policies, and programs to figure out what makes things better.How do you feel about having a disability? Is it a strength or a weakness? How about both?
There is innate power in being a woman with a disability. Whether we want it or not, we are seen and heard but it is our choice on how we use that platform. Of course, there are those moments where everyone wants to blend in (like those late night shopping trips to Walmart in your pajamas) but for those of us with obvious disabilities “blending in” is often not possible. For me, having a continuous platform has allowed me to teach others about diversity, assuming competence, and the important role that individuals with disabilities play in the world. By having a disability, I am forced to face the barriers created by injustice every day. In order for me to lead a self-determined, fulfilling life it is impossible for me to not fight for equality. Apathy is not an option. There are days that having a disability with a lack of necessary supports or facing discrimination is absolutely exhausting. But it is during those times that I must remind myself that it is not the disability that is the barrier, it is the lack of support and the presence of injustice that causes my exhaustion. It is the moments when I call restaurants to ask if it is accessible to then show up to find out that they consider “only one step” to be wheelchair accessible or when I go to the doctor and they asked the individual beside me to fill out my paperwork (even though I don’t know them), when I need those reminders. Through resiliency, perseverance, and faith weaknesses can become strengths. It is through these moments of mental exhaustion that I am reminded of what others face on a daily basis. It rejuvenates my passion and reminds me why I am doing what I do.How have you overcome your most difficult obstacles?
The two main barriers that come to mind are myself / my false perception of disability and society/governments understanding of disability and success. My misconception of disability prevented me from pursuing my maximum potential for most of my life. Living life and meeting others with disabilities change this false perception for me. In the United States, disability governmental benefits as an adult often depends on your ability to work, earn an income, or have saved money. The benefit system does not take into account the advancements in technology and medical technology that has allowed individuals with disabilities to survive and be successful in careers while continuing to require ongoing expensive medical/home and community-based services. If we are able to earn money than we are at risk of losing life-sustaining services. This was one reason that I establish my business, so I could control my income. This is also why I am married by the church but not by the state. Although I earn over $20,000 a year it is not nearly enough to cover the $250,000 of care that I require each year. My business allows me to regulate my salary so that I can continue to receive medical assistance and I am currently working on state policy that can allow individuals with disabilities to continue to receive medical assistance while earning a livable income.Have accommodations assisted you over the years or has it been an uphill battle to find resources?
A significant amount of my supports are provided directly by other individuals. Because I require 24-hour care I am able to get support in almost all activities of daily living. Slowly, technology is improving allowing, individuals like myself to use it to be more independent. Instead of relying on individuals to type, turn lights on and off, locked the door, change the thermostat, or look outside I am able to use technology and do it on my own. These smart home devices are being developed for the general population and are therefore less expensive than disability specific technology.How has having a disability impacted your relationships? Do you find it a significant part of the communication of needs?
How has it not affected my relationships? A majority of my friends and my husband are individuals that I have met because they are individuals with disabilities or work with individuals with disabilities. Throughout college, a majority of my friends were individuals that I hired to be personal care attendants and throughout my jobs my friends have consisted of individuals who have disabilities. My disability influences the activities we can do, times that we can meet, locations that we can go to due to accessibility, the strange interactions I have with other people, and thus our conversations. Until college, I tried to separate friends from individuals who provided disability accommodations. I didn’t want my friends to think of me as a “burden” because they had to help me. Since I had to hire peers in college to provide my care I overcame that concern and realize that things are much easier when we all help each other.Describe yourself in three words and explain why you chose those words..
- Persistent- the word “no” has never been in my vocabulary. Whether it was dealing with my own physical limitations, bureaucratic barriers, or problem-solving the word no is not good enough. My persistence allowed me to find ways to accomplish my goals or change the system.
- Resilient- I repeatedly run into obstacles that set me back a few steps. Sometimes it involves insurance, change in medical equipment, changes in my health, etc. I have learned that although they are extremely frustrating and time-consuming, these barriers have allowed me to learn and grow. They have additionally allowed me to help others who may have not face the barrier got that are bound to.
- Passionate- when I get involved in an issue, I jump in with my whole heart. I find true joy when I am working on projects that will empower others. This passion is my life power.
A Brand New Beginning: Interview with Joseph Sehwani & Chris Girsch
A Brand New Beginning: Interview with Joseph Sehwani & Chris Girsch
Joseph Sehwani started Dreamscape Foundation, a 501c3 nonprofit foundation, because of his developing Leber’s Hereditary Optic Neuropathy (LHON), a rare visual impairment, in high school at age 16. Chris Girsch, Dreamscape’s social media/blog manager and longtime friend, witnessed firsthand Joe’s worsening condition, as well as the conceptual stage of Dreamscape. Joe and Chris have been friends since high school, and they both realized that it doesn’t take much to make a difference.
Only employing as early as 2017, Dreamscape has been consistently pushing out blog posts and video game charity streams. Chris has witnessed over a year now, Dreamscape showing a complete night and day from when he has started. His daily goals are promotion and spreading the word. “A lot of it is catering to people like Joe, who seem like they don’t believe they will have any relief, or support through anything,” Chris stated.
Making the Difference
Girsch closely witnessed Sehwani’s journey and how he overcame his struggles, starting with stigma. While Joe’s vision isn’t 100% gone, he started noticing others had a lot of confusion surrounding the topic. Arriving to class equipped with a cane, the stigma was at its peak attending high school. The soon charity founder felt as though people felt bad for him, or assumed he wasn’t as intelligent. Sehwani is not one to admire pity, so it was difficult for him to adjust to that kind of reaction. His coping method was to crack a joke about it early on in meeting someone to help clear the air. For Chris, he noticed that people didn’t understand that Joe still had some vision, at the time equipped with a walking cane and wearing prescription sunglasses. There’s no way anyone could know. Chris and Joe were becoming good friends six months before Joe told him he was becoming blind, and it was a bit of a shock. Chris witnessed the evolution of people changing around them, changing their dialect, and treating Joe like he was fragile. It came out of not understanding how to treat or talk to someone with a disability, which is just like talking to everyone else. That stigma was something both experienced. Joe was always very social, calling up friends to go to the movies and hang out, so he got to see who his real friends really were.Sharing The Dream
Part of Dreamscape Foundation’s mission became educating the uninformed, as well as supporting the disabled through accessible technology. As for Joe’s LHON, it’s a gray area where he can look at his phone. In order to see, he takes advantage of using the accessibility options found on the iPhone. All while using accessibility every day, Dreamscape wants to educate people that visual impairments are more than just being blind or not blind. There is a mix of in-betweens, such as with LHON. Resolving confusion could also end some stigma for people, in their receptiveness of those with visual impairments. It’s not the same for everyone. Not only does Dreamscape help the disabled, one such story found our charity support a young girl with cancer. Although, Sehwani’s advice to any nonprofit starting is to find a niche and not take on everything. With that said, ever since Joseph’s grandfather passed of cancer, he was glad to help someone with cancer. Dreamscape stays open to various needs in the future. As the charity matured, they found their niche. However, their open-mindedness to helping others in general, saved that young girl with cancer. She wouldn’t have gotten treatment without Dreamscape’s help. According to Chris, “We’ve done so many fundraisers; Some for St. Jude, we’ve supported orphanages, and second chance homes for kids in the state of New Jersey. All while leading up to the Giving Season (Holidays) working with Toys for Tots and Salvation Army.”A Fresh Start
In terms of last year’s accomplishments, Joe says “I would say another big thing that we accomplished over the year would definitely be establishing the Dreamscape Foundation website and kind of really pushing that out there.” Sehwani personally works on the website, and states “It was less of rebranding and more of building context in what we’re doing.” Dreamscape upheld their commitments with schools in Jersey, supporting accessibility school programs. Here at Dreamscape, accessibility means independence for everyone. When Joe was starting the new website, User1st and Dreamscape partnered up. User1st is a company who helped teach him a lot about accessible software for people with disabilities. Joe then returned the favor, by supporting their web accessibility initiative. Through User1st, Sehwani started reaching out to Universities to help disabled students have all the access they need. Before Chris was faced with Joe’s visual impairment, he admits that he did not think too much about accessibility. He did not know the full measure of its importance to people with disabilities. As someone without a disability, he says “it taught [him] a lot!” Dreamscape current campaign is helping twins Justin & Kenny Jongsma who both have LHON, like Dreamscape owner Joseph Sehwani. Brand new accessible technology for the blind called eSight eyewear has changed the game. The glasses like device adjusts visual impairments and corrects the vision loss. According to Chris and Joe, everyone deserves independence through accessibility. “There really is no nonprofit for accessibility,” Joe says. Together, Joe and Chris want Dreamscape to be out there and to have its own niche. Not just another visual impairment or blind charity, cancer charity, etc. but we want to leave a unique footprint on the world of accessibility. « Previous Next »Can Exposure Create Normalcy for the Disabled Community?
Can Exposure Create Normalcy for the Disabled Community?
Can someone have a disability and still lead a normal life?
It’s a question many Americans ask themselves as they find ways to live life in the wake of their disabilities. While physical and mental limitations can turn daily habits into difficult challenges, their circumstances come with another hurdle; one that is psychological.
How do you find equal ground in society when everyone views you as different?
We Live in a World Where Disabilities are Relatively Common
A wide range of disabilities impacts our population. In the United States alone, 48.9 million people have at least one. While it may not seem like much compared to the more than three hundred million citizens within this country, we adopt a new perspective when we realize one in every five people we encounter fall under this category. Disabilities are common enough to be found in every restaurant, school, coffee shop, and public space. Yet all too often we treat people with obvious disabilities as anomalies within our society. Sometimes their differences are celebrated; other times they are ostracized. We encourage the former and reprimand the latter, but what about the in between? A few years ago, The New York Times published an opinion column where individuals with various disabilities shared how their circumstances impacted their quality of life. Their feedback is a compilation of pros and cons as they learned to live with the limitations or difficulties spurred by their circumstances. Yet all of them were unified in a desire to be seen as normal by others.What is Normalcy?
Obviously, creating a sense of normalcy doesn’t mean pretending one’s limitations don’t exist. Instead, it’s about inclusion. Ideally, this is achieved by creating a society where a person is viewed not through the lens of their disability, but rather for who they are. In order to create this normalcy, we have to tackle both the physical and psychological challenges posed by disabilities. This starts with two things: accessibility and acceptance. A large part of Dreamscape Foundation’s mission is dedicated to making everyday life more accessible. Through technological advancements and innovative solutions, we are slowly bridging this gap. Yet acceptance is a slightly different beast to battle. How do you normalize disabilities? The answer, in part, is through exposure. By integrating various disabilities into our everyday society, we change the overall perception that they make people“less than” normal. If you look around, you’ll see examples of this today. From inspirational role models to even action heroes like Professor X and Daredevil, there are many figures in our culture who show the world that being disabled doesn’t mean being less capable. Yet too often we think of these people as the ones who beat the odds. We marvel at their success instead of believing that anyone in their shoes can achieve the same things. This is where we as a society need a shift in mindset. When we create a perception that disabled individuals are capable of not only living but thriving, within our society, we break down mental barriers that hold them back. As a society, it is our duty to give hope to others while casting light, not on the limitations of disabilities, but rather the potential of individuals in spite of them. « Previous Next »10 Different Ways to Prevent Blindness
10 Different Ways to Prevent Blindness
Most people take the ability of sight for granted, never thinking that they could become blind. Glaucoma, cataracts, diabetes and macular degeneration are just a few of the ways one can lose their eyesight. Below, we have broken down the multiple ways one can prevent eye damage and vision loss.
1. Key Nutrients for Eye Health
Having a well-balanced diet high in nutrients from leafy greens, vitamin A, C and omega-3’s is a huge preventative measure which most people over look.2. Cloudy with a Chance of UV Damage
You can prevent macular degeneration by wearing sunglasses, but not just any sunglasses. One hundred percent protection is the way to go. Cloudy days may seem like a safe bet, but you can still sustain UV damage from diffused sunlight through the clouds.3. Sunscreen Protects more than the Skin
Typically, wearing sunscreen can help prevent skin cancers like carcinoma and melanoma that can form in or around the eyes or eyelids causing severe damage to eye integrity.4. Computer Screens, Tablets and Smartphones
In the modern age of computers and the Internet, we are almost completely dependent on tablets, smartphones and other devices to perform tasks for work or entertain ourselves. As a result, our eyes become increasingly strained and damaged due to constant exposure. It’s important to unplug or look away from the screen. The 20-20-20 rule states to focus our eyes on an object roughly 20 feet away every 20 minutes for 20 seconds to help preserve our vision.5. Eye Exams
Scheduling regular eye exams is another way to help preemptively prevent eye degeneration. Dilated eye exams, while not a typical option, are more recommended to see deeper into the eye in order to spot diseases early on.6. Injuries and Safety Glasses
Eye injuries can occur without warning, most commonly at home, in the workplace or playing sports. An ounce of prevention is worth a pound of cure, so they say. Protective eye-wear is relatively inexpensive and often overlooked and can help save your eyesight while working on home improvement projects, especially if you’re Tim Taylor.7. Quit Unhealthy Activities and Habits
Smoking maybe be cool if you’re James Dean, but in this case can cause blindness due to the increasingly high amounts of carcinogens and toxic ingredients found in all tobacco cigarette brands. Smoking can cause cataracts and is three times more likely to cause macular degeneration.8. Upkeep of your Mind and Body
Keeping a regular workout routine is another healthy way to prevent vision loss by reducing the risk of obesity, high blood pressure and diabetes.9. Good Hygiene
Proper hygiene is just as important when keeping up your eyesight. Germs and bacteria can be damaging by spreading infection, causing irritation or redness and unwanted illness. It is important to disinfect your hands before touching your face and eyes.10. Genes and Family History
Researching your family’s genetics and susceptibilities give you more insight into possible future health issues and a leg up on preventative actions you can take. Our eyesight is one of our most vital senses. Being well informed about the causes of blindness and methods of prevention gives us a better fighting chance at maintaining proper eye health until a more advanced age. With advances in modern medicine, there’s no telling what the future may hold. Blindness may never plague us again. Looking to contact us? Let us know if you want to set up a conversation! (+1) 239-325-1881 « Previous Next »Joys and Challenges: Tips for Disabled People on Preparing for Parenthood
Joys and Challenges: Tips for Disabled People on Preparing for Parenthood
There’s a longstanding misperception that disabled people either aren’t physically able to be parents, or that they need extensive and ongoing assistance. Some people believe that an expectant disabled couple has twice as much work to do getting ready to be parents, having to accommodate both their disabilities and the demands of parenthood. In fact, they face the same challenges that any parent faces: their baby will need a crib and changing table, baby clothes, and the emotional support of loving parents. Getting up for a 3 a.m. feeding may be the hardest adjustment for any parent, disabled or not.
By the time they become parents, a disabled couple’s home has already been adapted to accommodate their physical needs. There may, however, be a few logistical arrangements to make depending on the nature of their disability. Most of these adjustments can be made with easily acquired special equipment. Just like any parent, disabled people are simply interested in making the job of parenting as easy as possible.