Impact Feature Issue on Postsecondary Education and Students with Intellectual, Developmental and Other Disabilities

My father proudly graduated from the University of Michigan in 1948, the first in his family of 11 children. Little did he know he established a generational pattern for the important men in my life. My two brothers, several cousins, and my husband all claim the same "maize-and-blue." At the age of 5, our son, Micah, attended his first U of M football game and was immediately awestruck by the "Go Blue!" spirit. I sensed he felt destined to follow in the footsteps of his Papa, father, and uncles. He didn't have the words to express this dream – words did not come easily to him then – but his dream was deepened with every U of M game he attended.

We as parents wanted both our children, Micah and Emma, to have dreams. Dreams motivate our spirit, drive us forward, stretch us in new directions, and compel us to try new things. We wanted our children to gradually feel the pull of passion and purpose. But what if their dreams are met with words like "unrealistic," "impossible," "out of reach," "can't do that," "unheard of," or simply "Why would he do THAT…?" Those were some of the very words we heard when Micah talked about his college dream. "Look at the facts," we were told, even by well-meaning people who cared about Micah. Fact # 1: Micah has a cognitive impairment with a low I.Q. score. Fact #2: Micah didn't read or write (though he could sign his name after years of practice.) Fact #3: There were no fully inclusive college programs in our community. Fact #4: Youth like Micah, with an IEP, go to community-based programs after high school, not college! What's a parent to do?

Listening to the Dream

One of the first things we learned as Micah's parents was to listen to his dreams, even if they appeared "unusual." Our first experience with the "listening thing" occurred when Micah was in his first grade self-contained classroom. After four months he announced to us, "I want to go through the same door as all my friends." We were stunned, and later swayed by his insistence to move him into a general education classroom. Micah began to teach us "unusual" does not imply "impossible."

Getting Micah in a general education classrooms through 12th grade was a bit challenging. But "college" – that was something entirely different! We had no idea how we were going to help him get through that door. Nonetheless, Micah held steadfast. We were committed to listening to him and heard more than just "I wanna go to college." We began to hear his unspoken desires like, "Hey, I wanna be with my friends. I wanna talk about what they're talking about. I wanna tell everyone what college I'm going to. I wanna go to football games. I wanna keep learning." And maybe most importantly, "I wanna make my own choices."

As parents, we shifted our thinking (most of the time!) away from someone else's facts and words like "impossible" and turned toward "what's the next step?" This was often not easy, but always right, and eventually became a strategy for dealing with the so-called impossible: Keep taking the next step!

Building the Dream

During Micah's final two years of high school, a creative and dedicated group of college and public school professionals and parents from the metro Detroit area met to consider, and eventually create, an inclusive program through which young adults with intellectual disabilities could become college students. Now called the OPTIONS Program at Oakland University in Rochester, Michigan, it gave students with intellectual disabilities the opportunity to attend classes, participate in extra-curricular activities, and, in Micah's case, live in the dorm. At age 19 Micah entered the program and through his six years in it grew academically, socially, morally, and politically in dramatic ways. He studied public speaking, created Power PointTM presentations on group dynamics, studied the difference between the ways males and females greeted each other in the Student Center for a sociology class, learned to use more hand gestures when speaking, studied social movements, took a hip-hop dance class, traveled to Israel, participated at the student leadership retreat, wrote papers (maybe not 20 pages long but two pages of facts he discovered with the support of a peer), and taught students how to use the voice-to-text software program critical to his communication. "Success" doesn't even begin to capture the extent of his growth, increased friendships and social networks, and enhanced skills to navigate the world. It wasn't a one-way street either. Based on the feedback from professors, staff, and students, he made important contributions to his campus and at several others across the nation.

In 2010, he received his certificate from the OPTIONS Program, celebrating his graduation. He now works in Detroit at the Michigan Roundtable for Diversity and Inclusion as a social justice educator for youth. He speaks nationally on disability and serves on the board of directors for TASH and the National Youth Leadership Network.

Guiding Principles

Looking back over the years, several principles guided our actions in supporting Micah's college dream:

• Acknowledge the range of feelings. For 12 years, Micah attended public schools. Although some days brought struggles to get him what he needed, the school experience was familiar and predictable. Near the end of his senior year, I had moments of sheer panic as I thought of Micah at college. Would he be safe? Would he be teased? Would he know how to get from one end of campus to another? He wasn't even comfortable crossing a small intersection by himself – how was he going to take two public buses for one and a half hours to a campus? Feelings are part of all transitions. If we don't acknowledge them, share them with a trusted person, these emotions return, often hindering us from moving forward. It was very important for me to communicate with a couple of mothers whose children had disabilities and were older than Micah. They had lived through it, survived the transition, and knew what I was feeling and needed to hear. They understood and validated my fears, worries, and even sadness at times. They also celebrated and shared my excitement. My mantra, when I remember it, is, "Feel the feelings first, with someone you trust, then move on to the next step."
• Support great expectations. This is a common chorus often repeated in the world of disabilities, so much so that sometimes it loses its significance and meaning. What these three words meant to us as Micah's parents was that we had to believe Micah could learn more and do more than what was often expected of him. Finding the right supports was vital to achieving those high expectations. "He can do more" became a common chant in our family, not in a way that pressured him (we hoped), but in a way that allowed him to build on what he enjoyed and could do well, sprinkled with a little bit of nudging out of his comfort zone at times. When Micah said he wanted to go to college, believe me, we never expected that he would eventually share a film about disability history in his class on social movements. We did not know that at the beginning of each new semester, he would stand up in class and ask for a tutor to help him study (and would be thrilled that "so many pretty girls" came to his assistance). We did not know that his confidence would soar so high that he would be able to speak on his own in front of the University Board of Trustees to present his case to live in the dorm. We did not know that he would sign-up to travel to Israel (gulp), or that he would discover a strong desire to read and diligently work at it with friends, or that he would find an interest in money, piqued by watching his friends use the on-campus bank. We did not know that he would understand the word "norm" and would inform us that it was not "the norm for college kids to wear boots in the winter!" He became more capable almost by the day. Even brain research supports what many parents have known for years: Students with intellectual disabilities do not stop becoming smarter and better problem solvers once they leave their senior year of high school. They continue to increase their problem-solving skills and academic performance if given authentic opportunities to learn, embedded in high expectations.
• Be mindful of the changing parental roles. A wise sociologist once told me there are two roles parents assume: one is the protector and the other is the guide. In the early years of raising children, the parent defends, cares for, looks after, and shields the child from harm and danger. It is easy to see how this role is often more deeply entrenched for parents of children with disabilities. We learn to be fierce advocates for our children. As they grow, we are challenged to move away from being the constant protector to being the emerging mentor or guide. We had to step back a bit and let Micah tell his story, hand in his un-perfect paper, sign his name at the doctor's office, make his choices about what to wear. This re-arranging of roles is not a simple transition. When Micah ended up stuck at his bus stop for two hours 30 miles from home in an evening snow storm that shut down the entire county, I wanted to put on my Super-Mom cape, leap over tall snow mountains, and fly him to safety. I couldn't. We literally became his guide (thank goodness for cell phones!). We created a plan whereby his father called him every 15 minutes as he stood in a bus shelter. (He did begin to think differently about the norm of not wearing boots after his feet almost froze that evening!!). After that experience his confidence increased, as did ours in him.
• Build relationships with allies and his peers. Beginning in 6th grade, Micah invited a few friends to help plan his IEP and attend part of every meeting. This involvement of friends continued into college. At his person-centered planning meetings, he always invited a few college peers to participate by bringing real-world solutions and insights into the discussions. They often came up with the most practical and astute ideas of how to support him. When Micah was in college, each year we invited him and a few of his friends to dinner. We kept the conversations light, fun, and we listened a lot. We learned so much. Eventually some of the peers felt comfortable sharing more ideas and questions. I recall one friend asking me how to handle Micah's falling asleep in an early morning class. I asked her what she would do if another friend fell asleep. She quickly said, "I would elbow him and tell him to bring a cup of coffee to class." She instantly "got it" as evidenced in her response to me, "Oh yeah, I get it. I guess I can do that with Micah too." Folks need to know that it is okay to ask questions and share concerns. Micah learned to tell his tutors, "I'm okay with you asking about my disability. I'll tell you about it and how I learn best." Fundamental to Micah's sense of self was his participation in organizations led by youth with disabilities, where he experienced disability pride and culture.
• Expect to live with uncertainty and risk. I suspect that many parents raising a young adult with a disability have experienced a similar unsettling internal dialogue that goes something like this. "Do I let Micah try new things? If I do, what if something goes wrong? What if he gets hurt? Would I have this same fear if he didn't have an intellectual disability? But he does, so what do I do?" I'm not sure this worried-parent script will ever cease, but after more than two decades I am somewhat better at expecting these periods of anxiety. I try to be mindful of them, maybe talk with a friend or family member, create a plan, and eventually remember to not let fear dominate my decision-making and support of Micah. My husband and I try to minimize the risks, discuss pros and cons, and practice with Micah the best ways to handle awkward or uncertain situations. But, ultimately, we realize that overprotection will only hinder his ability to make safer decisions for himself. When this happened during Micah's years at college, I tried to practice getting more information from Micah, gaining a sense of how he was doing, and if necessary reach out to others. My husband and I cannot shelter Micah from all risks, nor can we do that for our daughter, Emma. Risk-taking comes with the territory for all of us.

I recently read an article by Sunny Taylor (2004), an artist with a physical disability, in which she said that too often professionals (and I would add parents) equate independence as having "self-care skills" such as feeding, dressing, moving about the community, banking, etc. These skills can be important, but they are not the determining factor in one's quality of life. In her words, people with disabilities define independence beyond self-care skills as the "...ability to be in control of and make decisions about one's life, rather than doing things alone or without help." Twenty years ago I don't think I would have understood this definition. I think I do now. Micah has taught us that the quality of his life is primarily based on his ability to know he has choices and can make choices with support. And for Micah making his own choices has meant going to college (with or without his winter boots!) and it's been worth the effort and risk for all of us.