Intellectual Disabilities

Happy Disability Pride Month! I didn’t identify as “disabled” before I received my various diagnoses (due to lack of awareness that my struggles could be considered as such), but I’ve always had challenges with my mental health and the way I perceive the world. I started to see myself as disabled in college, when my neurodivergence and mental illness started to majorly impact and interfere with my functioning and the need for accommodations grew. That said, there is no right or wrong way to be “disabled.” It is an identity for some, and for me, I initially had shame. I hate to admit that, but I initially felt some shame around needing so much help. Today, I feel pride. Pride, not necessarily because I need accommodations, but pride because I realized I wouldn’t be who I am in all the good ways without my disabilities. I am an out-of-the-box thinker. I am creative. Resilient. Brave. Empathic and compassionate. Intuitive. A gifted creative writer and speaker. Are all of these traits because of my disabilities? Some would argue no, that they’re unrelated. However, I disagree. I think there is a strong tie between my struggles and my strengths. I have mental illness (bipolar disorder, OCD, CPTSD, anxiety, anorexia), learning disabilities (dyscalculia, NVLD, auditory processing disorder, and ADHD), and am autistic. I have heightened sensitivity to the world around me; I have meltdowns and breakdowns and struggle to work at times. I have had to take multiple medical leaves to get through college. I have accommodations in graduate school. I take six medications daily and go to therapy at least twice a week. I am privileged that I have access to such help. Not everybody does. I am disabled and I can still complete a lot of tasks, while others are near impossible. Some things I need help with and others none at all. Again, there is no right or wrong way to be disabled. I am disabled and I am proud. What can you do this July? Read and listen to more disabled voices — of all kinds! My disabilities are mental, emotional, cognitive, and sensory, but many have physical and intellectual disabilities. We must band together as not just a community of disabled people but a community of people — disabled and non-disabled coming together.

Supporting my son on the autism spectrum doesn’t stop at 3:30 in the afternoon when my workday is done.  It continues through the evening and into the morning before my workday begins. I’m setting timers, following routines, and using positive reinforcement to help him get out the door with a minimal amount of arguments. After school, I’m checking on how my son is feeling, giving him time to swing, and offering choices for when homework needs to be completed. I am always mindful and on my tippy toes. I am a social worker for students with autism, intellectual disabilities, etc.  I am also the parent of a teen on the spectrum.  My son is loving, funny, unique, and amazing.  He also absorbs a lot of my time and energy.  I need time and energy for his sibling who needs attention too, although in more subtle ways.  Add in a husband and a dog, both with their own needs, and there ends up being very little time and energy left for little old me. I have to fight for that time, and typically someone drops the ball the minute I make the effort to take care of myself.  It can all be too much. One of the greatest choices I made when my kids were young and I was adjusting to my son’s autism diagnosis was to allow therapists to come into my home and not only work with my son on skills, but give me a break.  This was different than a babysitter or a family member giving a parent a break.  What helped me was knowing that my son was learning from a professional and I did not have to feel guilty worrying that he was just zoning out on screens while I was gone. In my role as a school social worker, I implore parents to allow professionals into their homes, knowing that there will be awkward moments in which you would like to argue with your spouse without this person in your home.  It may be awkward and uncomfortable, but it’s worth it.  Raising a child with autism is a great responsibility, and without these extensive interventions, our children may not communicate or function successfully in the world. It is too much to carry without the support of others trained and willing to shoulder some of the responsibility. Unfortunately, sometimes people insist on putting their privacy above these interventions.  Sometimes it is because they do not want others to see what is happening in their homes.  Other times, parents just feel they know what to do and don’t want outside suggestions. Sometimes parents insist on being martyrs. It’s really hard to make these decisions, but I feel I have the unique perspective of a parent and professional.  I am begging you, let people help your child.

May 2-6 is National Teacher Appreciation Week. My daughter Rachel is 22 years old and has Down syndrome. While she has completed her formal education, showing teacher appreciation is always appropriate. I believe there are some common threads among the good teachers she had that helped make inclusion work for Rachel. I wanted to share some of those common threads. First, I want to say a heartfelt thank you to those who teach and specifically to the teachers who taught Rachel. That includes the support and related services personnel like paraprofessionals, speech, occupational and physical therapists, social workers, and counselors. I believe teaching is the highest calling. I am thankful many of you choose to teach and so many of you have been good teachers for Rachel. Throughout her life, Rachel has had many teachers. While some were definitely a better match than others, she had exceptional instruction and supports. I believe Rachel’s pursuit of her dreams and ability to navigate the world as a young adult is a direct result of the excellent early intervention services she received from Special Kids and Families and the Harwood Center. And it is a direct result of the outstanding teachers she has had. When people inquire about Rachel’s academic experiences, I try to make a conscious effort to tell people that Rachel had some really good teachers in her school endeavors. Rachel’s educational experience had plenty of bumps and train wrecks, but Rachel did have many educators who invested in her and believed in her. I believe that good teachers teach all children. Many of Rachel’s best teachers didn’t have specialized “special education” training. However, they believed that all children could learn and that you find a way to teach them and find a way to discover what they have learned. Accepting that everyone’s learning journey is unique is important. Communication is probably the area of greatest frustration for many parents. One of the most important aspects of Rachel’s positive experiences was the teachers and others who communicated openly. In my blog Communication 101, I talk about the fact that if you do not tell us, we do not know. Sometimes a simple email or phone call takes care of a misunderstanding or clarifies otherwise confusing information. On that topic, communication with paraprofessionals really does help. Paraprofessionals are often the ones who are writing or supervising the writing of the back-and-forth communication and one text, phone call or email can prevent an emotional meltdown from a parent. A willingness to admit what they do not know. I loved it when Rachel’s English teacher called me before school started and said, “I need your help. I want to teach Rachel, but I am not sure that I know how.” She had never taught a student with Down syndrome. Rachel had several teachers brave enough to say that out loud. We can work with that. We can help, and we can do this together. One of Rachel’s teachers told me she was thrilled and terrified when she found out Rachel would be in her class. She knew her from being around her at school, knew us because of our volunteer efforts at school but she had never taught a child with Down syndrome. She told me that she was afraid she would fail Rachel and us. They taught each other and a whole classroom of friends that year. At the end of the year, this teacher of 15 years told me that Rachel was the most memorable student she ever had and changed her as a teacher and her expectations for all students in a positive way. Another common thread for success is teachers who remember Rachel’s IEP is not a list of suggestions. It is a legal contract. There is information in her IEP to help her to maximize her potential, but it also provides information in the form of accommodations and modifications to help teachers know how to best meet her needs. I don’t like having to be “That Parent,” but if teachers don’t follow Rachel’s IEP, sometimes I had to be “That Parent.” Think outside of the box. Rachel’s class was reading “A Christmas Carol.” Her teacher sent me an email (open communication) and said, “I did something different with Rachel on the “Christmas Carol” test. From her class participation, I knew she knew the information, and I thought she could take the same test as the other students. I knew she could tell me the answers, so I didn’t give her a modified test. I gave the same test as the other students, but I let her give me answers orally. She made a 14/15!” The teacher may have been even more excited than we were. Embrace our idea of inclusion. Inclusion isn’t just about the classroom teaching. It is about the process. It is about the classroom interactions. It is about others seeing Rachel and others with intellectual disabilities as capable. The long-term rewards for all students are immeasurable. I suspect the results will include more jobs for individuals with disabilities and the ability to interact with clients and managers who have different strengths, preferences, and abilities. I suspect there is a group of people who will better navigate the course of life because of their experience in inclusive classrooms and communities. Sharing our high expectations. Our best partners in the journey have shared or learned to share our high but reasonable expectations. I have saved emails and notes from many we have worked with who say that working with Rachel and seeing what can happen when you try new things, when you don’t accept the status quo but instead set high expectations has changed the way they educate. Rachel’s team members often told stories of what the other students gain from Rachel. Others have their own little party when they see and hear her demonstrate what she is learning. As a side note, when you see your child demonstrate knowledge they learned from a teacher years before, drop that teacher a note. It means a lot to them. Again, I want to say thank you to the many educators who have shaped Rachel’s life and have joined us on this journey. They are now part of Rachel’s personal “Friends of Rachel Club.” Many, if not most, continue to follow her progress and be involved in our lives at some level. Final note: People tell me they stress about what they will do to recognize/honor/thank their child’s teachers. When you have a child with an IEP, that group is bigger than the average student, and it can be expensive. We did different things for Rachel’s teachers/team from serving an annual appreciation meal to gift cards, plants, and homemade treats. I did a little research and one of the number one things teachers told me they wanted? A card from the student/family. Just say thank you! They will appreciate being appreciated.

Do you know anyone who has: interviewed over 600 people for a Happiness Film Project that has over 3 million views had an official superhero drawn and named after them spoken to the UN or to Congress spoken to Parliament in London acted on an Emmy winning TV show won a broadcasting Emmy earned The Diana Award (named after Princess Diana — the highest accolade a young adult can earn for their humanitarian work) become an international and print model in NYC/ Paris/ Dubai and more made an award-winning short film acted in a George Takei play (Sulu from Star Trek) had their poetry praised by Pete Townshend of The Who been in People Magazine three times entered a Miss USA pageant written a children’s book officially counted over 75,000 hugs started a successful business and/or non-profit and/or become a globally known self-advocate — all while in their 20s or 30s? What would you say if I told you all of these amazing young adults have Down syndrome? As the mom of a young adult who has Down syndrome and autism, I say, “Yes! It’s about time!” People with disabilities, their families, educational professionals, employers, and society as a whole need this fresh breath of air that truly represents massive change. That is the only way we, as a cohesive unit of humanity, can move forward into this century and beyond. Every March is Developmental Disabilities Awareness Month. Because my Born Fabulous Podcast celebrates accomplished young adults with intellectual disabilities, I started sharing special features of successful young adults I know with Down syndrome on social media. What started out as a simple thing to do quickly became more involved. As I reached out to self-advocates and their support teams for more information and photos for my write-ups, I received extensive resumes and CVs. Each person had done so much already in their young lives that it was hard to highlight all their achievements. I received so many photos that it was hard to choose what to use, so I started making collages. And then I noticed these themes emerging. It became clear that massive positive change is taking place in the beauty industry, media including film/TV/social media, business, non-profits, advocacy/politics, sports, and more. Seven sought-after public/keynote speakers, four professional models, three filmmakers, four actors, two corporate CEOs, three non-profit CEOs, three artists, one professional lobbyist, and so many more amazing people emerged. A Happiness Expert (1) and a Hugging Expert (9) are in this exciting and eclectic group. Every single young adult is a strong self-advocate making a tremendous difference, felt not in ripples, but in waves. And these waves are no longer just local, they are global. 1. Fionn Angus, 26, Galway, Ireland. Non-profit CEO, musician (fiddle), visual artist, filmmaker, international public speaker, stand-up comedian, global self-advocate. Fionn has spoken to over 35 colleges and universities in England, Holland, Denmark, Australia, the USA, and Canada. He has helped educate over 10,000 students in Ireland about wildlife. 2. Nino Genua, 23, Bristol, England. Professional model, athlete, rugby coach, soccer coach, global self-advocate. Nino works 5 jobs, networks with other globally known self-advocates championing legal change to help people with disabilities, and is a strong believer in physical fitness after serious illnesses and injuries when he was younger. 3. Olivia DePiore, 25, Cleveland, Ohio. International runway/print model who has been in Fashion Weeks from NYC to Paris and Dubai, actress, advocate, superhero character Prima Diva by FutureGen Comics created in her likeness, childhood cancer survivor who has raised over $100,000 for the American Cancer Society. 4. Heidi Crowter, 26, England. Married, global self-advocate who has started and spearheaded changing laws to help people with disabilities in England and beyond. When Heidi hears no from legislators, she appeals! 5. Rachel Handlin, 26, USA. Photographer, award-winning filmmaker, visual artist, strong inclusion self-advocate, first person with Down syndrome to earn a bachelor’s degree at California Institute for the Arts and now earning an MFA at Pratt Institute. 6. Connor Long, 27, Louisville, Colorado. Film and stage actor, international public speaker, athlete, Broadcast Emmy Award-winning former reporter, filmmaker, self-advocate. 7. Mikayla Holmgren, 27, Minnesota. Professional model, dancer, first woman with Down syndrome to compete in a Miss USA pageant in Minnesota, public speaker (has spoken before the United Nations and the U.S. Congress). 8. Sean McElwee, 28, Mission Viejo, CA. Emmy Award-winning “Born This Way” cast member, CEO of Seanese t-shirts, creator/host/star of The Sean Show on YouTube, public speaker, strong self-advocate. 9. Tim Harris, 36, Albuquerque, NM. First person with Down syndrome to own a restaurant, CEO of Tim’s Big Heart Enterprises, very popular public speaker, author of “The Book of Hugs,” has officially counted 75,000 hugs. 10. Kayla McKeon, 34, Syracuse, NY. First professional lobbyist in DC with Down syndrome, podcast host of “Kayla’s Korner,” sought-after keynote speaker, community college student. 11. Stephen Todd, 31, Virginia Beach, VA. CEO of non-profit Bluebird Beach Bungalows. Stephen has raised over $80,000 for over 60 charities building $15 birdhouses out of reclaimed wood and sea treasure decorations. Stephen’s motto is “Do good things!” 12. Brandon Gruber, 26, California. Non-profit CEO, artist, used his art to sell cards to help people in disadvantaged groups – earned The Diana Award, model, fashion designer, actor who is currently in the George Takei play “Allegiance,” very strong self-advocate and leader, has been in “People Magazine” 3 times. 13. Melissa Riggio, New Jersey. Writer famous for “Know Me Before You Judge Me” in National Geographic Kids, poet whose poems were turned into songs by Pete Townshend’s wife Rachel Fuller, swimmer, strong self-advocate. Melissa’s father was former Barnes & Noble CEO Steve Riggio, and her birth made thousands of titles about disabilities available to the public in a time before Amazon. Melissa encouraged awareness events at Barnes & Noble stores all over the country, progress in continuing education after high school, and more progressive living choices in adulthood. Melissa passed away in 2008 at age 20, but will forever be part of disability history. She is currently listed in South Korean textbooks. This is just the tip of a massive sea of progress, not just for people with Down syndrome, but for all people with disabilities. I follow many strong, successful, and exciting self-advocates who are autistic, blind, have hearing loss, cerebral palsy, and many more disabilities. Progress for one is progress for all.

I have had many jobs in my life. But I have never worked as a dishwasher until I worked at Purdue University. I like working there and all, but the past few months I’ve had tennis elbow. I don’t know if I was lifting things in their dishwasher the wrong way or not. Two months ago, my left arm started hurting and I went to Urgent Care and they told me I had golf elbow. Which anyone can get, but my disability includes benign hypertension which is muscle weakness. But working at Purdue was a good experience for me. I’ve been working since I was 15. I had a few good jobs in my day. I worked in retail for almost 20 years. Some of the guests would get upset when I paused to think for a few minutes on the phone. I know it’s “get the manager” time then. I remember one woman said, “You don’t know what you’re talking about, do you?” No, you don’t understand — I have a disability. It takes me more time to think about stuff. Employers just don’t understand how to deal with people with intellectual disabilities. There should be a manual on how to hire, train, and keep workers with intellectual disabilities. That’s why there’s Special Olympics Athlete Leadership University. Athletes can take different courses to graduate. I have graduated in Communications, Governess, Sports, and Technology. I especially like Communications and Technology — those were the ones I was best at. I have given a lot of speeches over the years to organizations and a few schools. I’m getting to the point that I would like to talk to employers about hiring people with disabilities. They need to take the time to see if the person they hire can do the job right that is given to them. If not, the company needs to hire a job coach so the employee doesn’t need to have someone constantly watching over them. This is what a job coach is supposed to do. When I first worked at Purdue they said I should get a job couch. This was many years ago. I’ve had a few job coaches, but they didn’t really help. In my experience, they just stand there and talk to you and see how you’re doing. I have some friends at work at the dining court that still have a job coach. I noticed when I was in the dish room, a job coach would come in but they would just stand around and watch the workers. They didn’t seem to help them out at all, just asked how their work was going and everything like that. I am trying to look for jobs. I tried applying for unemployment also, because I don’t qualify for SSI. I guess the government doesn’t think I’m disabled enough. I know God doesn’t give you more than you can handle, but dealing with my health insurance is more than I can handle. My only choice is being on Healthy Indiana Plan 2.0. Luckily my mom can help me do most of that. She’s been dealing with that kind of stuff with my grandma. But when my mom and dad pass, my sister and brother are going to have to take over. Luckily my brother works at Area 4 Agency on Aging and knows what he’s doing. I think that it’s time for a change in jobs. I have 20 more years before I can retire. I am a people person; my dad thought I should be a CNA. Based on what I hear from other people, I don’t think I can do that. My handwriting is not good. I have a hard time writing notes. What I’d really like is to just visit with those that are lonely and need someone to talk to. Because I am best at that. I recently applied for an activity assistant job but they wanted you to lift 50 pounds, which I can’t do right now. I told them maybe in a few months. I would love that kind of job. I would have a bunch of ideas about doing different activities. I’ve tried lots of different things to help my golf elbow heal. I use BML muscle rub, copaiba essential oils (on the parts that hurt and as a pill). I should have listened to my doctor and taken anti-inflammatory drugs to let my arms heal. I wanted to see if they could heal on their own. I kept putting ice packs on my arms. I hope I find a new job. But we will see what happens. If you would like your doctor to know more or learn more about people with intellectual disabilities, have them go to this link: Inclusivehealth.SpecialOlympics.Org

Today, on Disability Day of Mourning, we remember our community’s fallen warriors and those who survive them. The disability community is getting stronger and more self-aware. Our generation is changing the world in incredible ways, but the warriors from previous generations fought for our disability rights. Our neurodiverse peers sacrificed their lives to make life for our generation safer and more accepting. We may think living with disabilities today is hard — and it can be — but it was extremely difficult back in the day too. Those who came before us in the disability community can teach us valuable lessons. In remembrance of those we lost, we need to look back at three things: the Holocaust, the Woodlands School, and the rise of the disability rights movement. Today, we have many social movements, like Stop Asian Hate, Black Lives Matter, and International Persons With Disabilities Day, but long before any of these movements began, the Holocaust threatened to destroy everything our ancestors fought for. The Holocaust was a systematic “ethnic cleansing” genocide under the Nazi regime, and it occurred from 1941 to 1945. During this period, German soldiers murdered millions of Jewish Europeans through work labor, starvation, forced killings, and antisemitic acts. Nazi soldiers also subjected disabled children under age 3 to “mercy killings” as part of the Tiergartenstrasse 4 (T4) program. The program also selected people with disabilities in prisons, nursing care centers, institutions, and schools for sterilization. Approximately 250,000 children with disabilities were murdered by the Nazis. Prior to the Holocaust, there weren’t any support workers, disability community events, or adaptive technologies, but unfortunately, there was the Woodlands School in British Columbia, Canada, which was one of many institutions. At that point, it was common to institutionalize people with disabilities, but this process was frightening for many of the people who were forced into these institutions. Being institutionalized prevented people with disabilities from seeing their parents, families, and friends. Many of them also faced abuse in these institutions. Neurodiverse advocate community Inclusion BC states that the Woodlands School was originally presented as a modern way to treat people with mental illness and intellectual disabilities but instead was criticized for not providing adequate care and support for its residents with disabilities. Today, we’re still fighting for disability rights, but this fight started with the rise of the disability rights movement. In past generations, many individuals fought for a platform to address barriers for people with disabilities, like institutionalization, the stigma against people who are “different,” and disability discrimination. The disability rights movement changed over time and began to involve newer generations as well as the older ones. This movement introduced adaptive technology, government assistance for people with disabilities and rehabilitation. It also led to the Individuals With Disabilities Education Act (IDEA), which allows people with disabilities access to inclusive education and other opportunities. Today, on Disability Day of Mourning, we must pay our respects to those who died while fighting for disability rights and those who witnessed those deaths. The generations that came before us fought for people with disabilities to have a better future, and they can encourage us to keep pushing forward. Today, as we remember those with disabilities who have passed away, we must remember this strong metaphor about our elders: “When an old person dies, a library burns to the ground… older people tell about their lives… such as death of a child, divorce, or illness… stories help us peer into the past and make pathways into the future… build your library before it’s too late.”