Adria's Notebook – Providing insight in disability through the lens of my personal experience.

Adria Closes Her Notebook

Posted on June 23, 2023 by wausbrook

Dear Readers,

I have greatly enjoyed sharing my experiences and highlighting issues surrounding transition and young adulthood with you. After a lot of thoughtful consideration, I have decided to close this notebook and pursue other interests. Thank you for walking along with me as I shared a bit of my journey these past few years. I hope I have provided some insight and information to assist you, your colleagues, or loved ones in the future. It has been a sincere pleasure sharing a bit of my life with each of you—I wish you all the best.

Sincerely,

Adria Nassim, Research Assistant, Indiana Institute on Disability and Community

A Big Thank You

The Center on Community Living and Careers at Indiana Institute on Disability and Community at Indiana University in Bloomington appreciate that Adria has contributed over 50 personal blog posts over these past six years. You can find an archive of these posts in the right margin. Below, we highlight a few of the thoughts Adria has shared with us about individuals with disabilities and their families.

Employment and Disclosure

Adria explains her decision to disclose her hidden disabilities. She shares that one of her biggest challenges when she began looking for work was learning age-appropriate social skills, both in a peer and an employment setting and then practicing them in real-world situations. Man using an electric hand tool while seated in a wheelchair at a work table.

Here are a few posts related to employment.

Preparing Teens and Young Adults with Disabilities for Employment — May 26, 2023

Why I Said Yes to Disclosure — May 31, 2022

The Disclosure Discussion — Dec. 18, 2020

Building Connections for Meaningful Work — Oct. 6, 2020

Independent Living

Throughout her posts on learning independence and moving toward independent living, Adria emphasized the necessity of learning self-advocacy skills, self-acceptance, using a team approach, staying safe, and individualized supports.

Here are a few posts related to independent living.

The Dignity and Importance of Risk in Planning for Independence —March 23, 2023

Man with a disability and his support staff member baking cupcakes.
Lessons from 15 Years of Independent Living — Feb. 7, 2023

Independence with Supports: A Day in the Life — April 28, 2021

Waking Up to a Brave New World — Feb. 13, 2018

Service Animals

Throughout her blogging years, Adria tells of her love of dogs, particularly her two service dogs, Lucy and Thomas. She explains the process for acquiring a service dog and all the responsibilities that go with having support from a service animal.

Here are a few posts that describe her experiences with service dogs.

What it’s Like to Care for a Service Dog —Nov. 18, 2022

Happy Birthday, Thomas! —June 14, 2022
Adria sitting on a bench with her service dog Thomas.

Welcome, Thomas! —Jan. 4, 2022

Happy International Assistance Dog Week —Aug. 4, 2020

Support Staff and Care Providers

Adria promotes the idea that independent living does not mean doing everything on one’s own. She discusses the need for her own support staff and how she chooses staff to support her in her home and about town.

Here are a few posts related to support staff.

I Am My Own HR Department — Sep. 30, 2021

With a Little Help from My Friends — Feb. 17, 2021

Drawing the Line: Who’s a Provider and Who’s a Friend? — Jan. 19, 2021

Making Dinner: The Collaborative Approach to Cooking with a Disability — Oct. 20, 2020

Developing Strengths and Relationships

Adria has developed many relationships through employment and through her public speaking about disability issues. She advocates for all individuals with disabilities to develop their interests and relationships that may lead to a more fulfilling life.

Here are a few posts that promote relationship development.

Three people taking a selfie, laughing as they hang out together.

Helping Kids with Disabilities Find Their Passion — May 28, 2021

Ed Sheeran, Hot Sauce, and Dogs: Getting to Know Me — March 23, 2021

Promoting Literacy Among Teens and Young Adults — May 19, 2020

Adria’s blogs touch on many other important topics as well. To read more, browse the archives at the right.

Once again, we want to extend our heartfelt thanks to Adria for sharing her experiences and offering suggestions for friends and families to help their loved ones who have disabilities.

Preparing Teens and Young Adults with Disabilities for Employment

Posted on May 26, 2023 by wausbrook

By Adria Nassim

Ever since I was a child, I loved to write stories—a passion that would eventually become my career. As a child, I also learned how to convey the unique needs linked to my disability and to cultivate diverse friendships. Now, as a staff member for the Indiana Institute on Disability and Community, I use my experiences to guide young people with disabilities, and I encourage parents and caregivers to recognize and nurture their child’s talents. With patience, persistence, and staying open to receiving support, I believe everyone can find fulfillment and joy in a workplace that fits their unique strengths.

Expanding my early interests prepared me for my career

Even though I wasn’t writing for a newspaper or magazine at six years old, there were certain things I remember about my childhood that helped me prepare for employment years down the road. I always had a big imagination as a kid, and I loved to write stories. By about age five or six, my parents and teachers would comment about the stories I had written and encourage me to write more. I felt so proud when I wrote something, and people liked it and wanted to read it. The encouragement of my writing continued into my teen years, and by college I looked at writing and public speaking as a way to build a career and make money.

I was also told at a young age that I had a disability. My parents explained to me that I might need help with some things that other kids might not, but that it was okay to need help or do things a little differently than the other kids. As a result, I had lots of practice expressing my wants and needs to others when it came to my disability.

As I got older, my parents also started to talk to me more about my disabilities and how they affected me day to day as far as what my challenges were and how I could advocate for myself in specific situations. When I was hired by the Indiana Institute on Disability and Community in July 2017, I felt very comfortable going to my supervisor and talking about my support needs at work.

Interacting with peers with a diverse group developed my social skills

I spent a lot of time around kids without disabilities growing up and did extracurricular activities with them. I swam year-round on a swim team with other kids without disabilities and spent most of the day with them in school. I also had a younger sister without disabilities, and spending time around typical kids allowed me to expand my social and emotional skills into the greater community and have a chance to practice them.

My parents also made a point to consistently reinforce and model age-appropriate social behavior both at home and in public which also helped me become more proficient with social skills early on. As I reached young adulthood, this evolved into individual and group social skills therapy sessions for young adults with autism.

In general, I recommend that parents and providers recognize skills and talents in young people with disabilities and to encourage them to pursue them. As much as possible, try to focus on what the young person can do and what they are good at.

Finding your own path is important

Allow them to explore a variety of jobs and interests so that they know what they like in a job, what they don’t, and what kinds of things work well for them in the work environment. Also, being open to support and suggestions from others can be helpful.

Every person’s journey in employment is unique, and a job that is a great fit for one person may not be the best fit for another. Be patient and persistent in your search. Keep looking until you find a position you really enjoy that fits you or your child.

If I’m Not Home, Check the Library

Posted on April 21, 2023 by wausbrook

By Adria Nassim

April 23–29 is National Library Week, but for me it’s always library week! Libraries have always been important to me since I was very young, offering an escape from society, serving as a diverse social hub, providing a low sensory environment, and fostering a sense of belonging.

My favorite place in the entire city is the library. I tell my friends, if the weatherman forecasts an apocalypse and I’m not home, check the library! My love of libraries and books started very young. My parents read to my sister and me every night from the time we were babies until I was 13 and she was 11. We would go to story hour at the local public library multiple times a week with the A small group of children with open books sitting on the floor around a seated adult reading to them. babysitter and her two children, and we had our very own library cards by the time we were probably three and five years old. Every summer, we would also participate in the summer reading program held at the library.

If I did really well on something or had been working toward a goal for a long time and finally reached it, my parents would often reward me with a trip to the local bookstore. Bookstores and libraries were my happy place. I would wander the library aisles for hours just browsing, but sometimes I would choose a few titles, take them home to read over the course of a week or two, and come back for more.

Passport to Another World

As I grew older, reading books and going to the wonderful fortress of knowledge that enshrined them—the library—became much more to me than a source of entertainment. The library became an escape from the complexities of the social world. I didn’t understand how to interact with my peers, and it was often difficult and stressful. But when I opened a book or went to the library, I Stars and lights coming from an open book and magically lighting up a young woman's face. could forget all of that. I could go to some different magical world or be part of some different character’s life and forget about school.

My love of libraries has stayed with me into adulthood. I visit the local library several times a week with Mr. T., and all the reference librarians know us.

You may think of libraries as a place full of books, but there’s a lot more to the story. Today’s libraries have become so much more than just a place to study or check out books. Libraries function as community hubs and social outlets for people and families from diverse backgrounds, including individuals with disabilities who often experience higher rates of social isolation. Our local library has hosted board game nights, a Mario Kart tournament, an after-hours Nerf battle, and even a hot sauce eating competition in addition to several regular book clubs.

Adventures Beyond Reading Books

I also really like going to libraries because I find that people who value intellectual conversation, academia, and research tend to use the library. Through the years, I have met several friends and acquaintances just by being a regular visitor. Libraries can also be a good source of employment for some individuals with disabilities.

Three smiling young people sitting on the floor of a library with a large bookcase behind them. I am always comfortable and happy whatever I’m doing at the library. I really like the quiet environment with low stimulation. It is very important for teens and young adults to find a place where they feel comfortable and accepted and feel like they belong. It may not be a library, and it may take a while and some experimentation to find the right fit. Wherever it is, it’s important that your young person feel valued, comfortable, and accepted.

Thank you to all those involved keeping our libraries around the state stocked and running! Happy National Library Week, all!

“Let Me Try!” The Dignity and Importance of Risk in Planning for Independence

Posted on March 21, 2023 by wausbrook

By Adria Nassim

When I speak with different audiences, I typically mention one of the key elements that led to me living a meaningful independent life in young adulthood was my parents’ belief in the dignity and importance of risk in planning for independence. They both accepted very early on that I would have challenges. They knew I would need significant support to master skills most kids learn in just a few weeks (such as putting socks on or zipping a jacket). However, they kept the focus on what I was able to do and all the new skills I was learning and encouraged me.

Mom had a saying she used with me when I was young. If I would ask for help with something, she would first say, “Pretend Mommy isn’t here. What would you do if you were by yourself?” For about 10 minutes she would make me try to do the task myself (for example, opening a bag of chips), and then if I were still having trouble, she or my dad would help me. I don’t think I ever would have said thank you when I was about eight years old and struggling to brush my teeth or 12 and couldn’t put my socks on. However, now in adulthood, I look back and understand why my parents did what they did, and I thank them.

Being allowed to fail actually helped me progress

A young child buttoning his blue and white shirt. It isn’t that they wanted to watch me struggle. Quite the opposite. It is through challenge and struggle and being allowed to fail that I learned that I was capable of not only living a life with disabilities but also embracing it for the best that it could be. Even though sometimes I needed to ask for help and couldn’t do things completely on my own, with every failed attempt I learned there would be another chance to try again, and there was. And through their willingness to challenge me and stretch me beyond my comfort zone, my confidence grew with each newly acquired skill or positive experience. The more my parents challenged me and encouraged me, the more confident I became.

Before they would encourage me or challenge me to do something, they had a very thorough understanding of the ways my disabilities affected me day to day. They chose tasks that were developmentally appropriate and specific to the goals I may have been working on. They gave me responsibilities when I was young, and these gradually increased as I got older. As a child, they asked me to pick up my toys and put them away, hang up my backpack, and help bring in groceries (items that were not too heavy). I think that my parents beginning with high expectations and giving me responsibilities at a very young age, probably by age three, did a lot for my success in adulthood.

Fulfilling high expectations built my confidence

With an increase in responsibility came increased freedom and more time spent away from Mom and Dad. From a young age, I became used to trusted adults other than Mom and Dad caring for me during the day. Since this pattern started when I was young, by the time I was ready to leave for college, I felt prepared to be away and be independent of them.

A young man in a yellow jacket works on a laptop while a woman looks over his shoulder. Over my years in public speaking, I have found that many parents of children with developmental disabilities do not challenge them but tend to do for them rather than taking the time to teach or model a skill and encourage them (when safe) to try for themselves. Parents do this out of love. Often, parents of children with disabilities feel the need to protect their child, even more than parents of typical children, because they are often more vulnerable and more significantly challenged. Parents also may not want to place their child in a position where they may face significant difficulty or fail, because day-to-day life is already challenging for their child. However, as loving and well-intentioned as this approach is, it can often have the opposite effect on children.

Because of the decision my parents made to encourage and stretch me, when I reached young adulthood, I felt excited like most high school graduates to go away to college. I was not fearful of being away from Mom and Dad. I had done it many times, and hey—it was fun. I felt confident, and I was not fearful of what life had in store. I knew with the right support, I was going to do just fine.

Lessons from 15 Years of Independent Living

Posted on February 7, 2023 by wausbrook

By Adria Nassim

Recently, I heard a conversation in which someone said 2008 was fifteen years ago. In the fall of 2008, I had just moved to Bloomington where I started college at Indiana University. At that time, I also enrolled in a program for college age students with autism and learning disabilities which helps them to develop independent living, academic, social, and vocational development skills. The 3.5 years I spent in the program helped me gain the skills I needed to live an independent and fulfilling life. In addition, I have a very supportive family who were very involved in my care from an early age and who planned for my independence starting when I was young.

It’s really cool for me to stop and think that I’ve been living independently for 15 years now. In recognition of this anniversary, here are five things I’ve learned through this process. The following are listed in no specific order:

Self-advocacy skills are important in relationships: When I was younger, I would ask teachers and sitters for help with certain tasks from a young age but coming to Bloomington was the first real opportunity I had to experience reciprocal friendship. Being able to explain to my peers what my different diagnoses were, how they affected me, and why I might need assistance with certain tasks gave me a lot of confidence. And in the long run, my doing so brought us closer and made them want to get to know me more.
Self-acceptance takes time: This took a long time and a lot of support from family and mental health professionals to learn to accept my diagnosis as it is. Sometimes, there are still hard days, but overall, I am doing much better than in my adolescent years. I finally accepted that in some ways, my life will be similar to that of my friends. However, in other ways, it will be quite different, but it can still be a good life.
Independence doesn’t happen alone, but together: Being able to live away from my parents and have my own place is awesome, but it takes a team of people in order to make it possible for me to live the life I want. I have also had to accept them and be willing to let them into my life. Most of these people are IU students. Many are interested in fields such as medicine, social work, psychology, education, and others that involve direct interaction with individuals with developmental disabilities. They usually work around four to eight hours a week total in the evenings and may assist with tasks such as making dinner, shopping, running errands, or taking Thomas for a walk. We might also do social activities such as attend an event on campus, go to a movie or a basketball game.
Being able to safely navigate my community changed my world: One of the biggest accomplishments that helped to open up my world was learning how to navigate Bloomington. The program staff figured out that although I have terrible difficulty making sense of spatial concepts such as directions and how close or far away something is, I can read. They taught me the names of the streets and what sorts of physical landmarks were around or on each street. Slowly, after months of repeated exposure, I began to memorize the landscape, and thus, I began to navigate a city for the first time.
Individualized supports can make a big difference: When it comes to providing support, what works for one person may not work for the next. An individualized support that works for me was the addition of Lucy, my former service dog. She helped me increase my independence and confidence. Lucy is trained in navigational assistance and can find the way home on cue while providing balance and stability when I’m walking. Lucy allowed me to be able to cross the street safely for the first time without another adult. With her along for the ride, I had my first taste real freedom.

A hand holding a compass with the needle pointing to the word freedom. There are also other supports that help me be successful including direct support providers, applied behavior therapy, and clinical psychotherapy. These, along with a service dog, have made a big difference in helping me live my best life. *Note: Thomas, Lucy’s successor, was hired onto Team Adria in the fall of 2021.

I chose these five areas to focus on because they have been particularly important in my development and movement toward more confidence and independence and claiming a place in my community in young adulthood. In many ways, these areas of focus have helped me continue to challenge myself to meet my potential and do things that my parents never thought I would.