Yes, My Child With a Disability 'Belongs'

There are so many different things one could discuss on the topic of belonging: fear of rejection, fear of not fitting in, fear of missing out. But there is also the importance of belonging to ourselves.

I learned how to speak english by watching Mr. Rogers on TV.

My family immigrated from Pakistan when I was a year old. My parents felt strongly that my older sister and I would learn English eventually, so they only spoke to us in their native language, Urdu. Our first home was a tiny apartment on the north side of Chicago. My mother would only let us watch Channel 11 and she loves to tell the story about how I would dance around the living room and kiss the TV multiple times whenever “Mister Rogers’ Neighborhood” came on. I would actually tell him I loved him. Out loud. Thinking back to this time, I realize what a beautiful experience for a little girl — for that to be my first exposure to a new language and new culture. To hear Mr. Rogers’ words over and over. Words like this:

“You’ve made this day a special day, just by being you. There’s no one in the world like you, and I like you, just the way you are.”

In my opinion, this quote gives the simplest definition of belonging. That I am good enough.

As I moved through my childhood years, I forgot this message. The societal and cultural messages I was receiving had a lot of influence on me, as happens to most of us. I felt separate from many of my peers growing up in the Chicago suburbs in the 70s and 80s. I was from a different culture, religion and race. At the same time, I was feeling separate from the culture and religion I was a part of. This wasn’t a debilitating feeling, more like an uneasiness that became my normal. Once in college, I became a seeker. I wasn’t sure what I was seeking, but was drawn to books about personal development, eastern philosophy, spirituality and what would have been termed New Age in the early 90s.

What started as a hobby turned into a deep dive following my son’s diagnosis.

My son, Zain, was born at 25 weeks. I was a strict rule follower when it came to doctors, but there were complications during the pregnancy and efforts to delay his delivery were unsuccessful. After being flown from Central Dupage to Lutheran General, Zain was born weighing 1-pound 12-ounces. He spent his first three months in the hospital where he was intubated and experienced various setbacks. We didn’t get to hold him until he was about 5 weeks old. Zain was so tiny, his head to his bottom would fit in my husband’s hand.

Once we brought him home, he continued to face challenges, and by the age of 1, was unable to move on his own, ate very little, had no language, sick often with respiratory issues and cried several hours a day. This was after multiple hours of therapies a week. To put it mildly, I was overwhelmed.

After visits to various specialists, we finally had an appointment with one of the top doctors in Chicago. She took one look at Zain and after what felt like a 2 minute exam, gave her conclusion, “Your son has spastic quadriplegic cerebral palsy,” she said. “He will not be able to walk or talk. Likely cognitive issues, GI issues, vision and hearing problems. It will be a difficult life. Here’s a script for therapy and valium.” “Valium for me?” She didn’t appreciate my sarcasm. “No, for him.” And that was the end of the meeting.

I was stunned. Stunned by her words and furious with her callous delivery. In the days and weeks that followed Zain’s diagnosis, I kept thinking ,“How can you predict the trajectory of someone’s life at the age of 1?” I felt fear of the unknown, fear that what the doctor said was true, fear that I had no idea what I was doing as a new mother as it was, and fear that I didn’t know where to turn. I felt alone. My husband, Matt, and I didn’t know how to explain what this all meant to our family and friends since we didn’t understand it ourselves. At times when I would be cajoling Zain to eat, to sleep or to stop crying, quotes I had read in the past would pop into my mind. Quotes from those new age-y books. I turned to those books and found new ones. I got curious. I would listen to books on tape while Zain and I made our usual rounds to see specialists and therapists. I started to put little things into practice, starting with living in the present moment — which really took a lot of practice.

Society was giving me the message that my son didn’t belong, that his life would be difficult, that our lives would be difficult. But what if we became open to another possibility? What if we don’t know what’s going to happen?

Those books and quotes motivated and inspired me. In order to help explore possibilities for Zain, I had to start with meeting him where he was. I needed to parent the child in front of me, not the future version that may emerge. I practiced being mindful, practiced self-compassion and empathy and savored the wins. We started exploring alternative therapies since the traditional ones were not helping Zain improve. We travelled all over the country and Canada. We learned about different ways to approach and improve his symptoms. Intensive home therapy programs, energy medicine, cranial sacral, magnet therapy — the list went on and on. Over the first six years of his life, Zain made marked improvements. He could army crawl, roll over, sit with support, speak clearly, he could read and was in good overall health. It was two steps forward, one step back. Zain got his first power wheelchair when he entered first grade.

As Zain got older, he would announce big plans, “I’m going to be on the radio,” “I want to be on the football team,” “I’m going away to college.” At these times, I would think I was responding appropriately and was encouraging, but I would feel a catch in my throat. I would wonder, “What’s this feeling about?” I started to bring more awareness to that feeling and got quiet. I realized that I was operating from an unconscious bias: my historical and cultural views of what someone with a disability could do, experience and strive for were rooted in fear. Fear of failure, wanting to protect him, fear of how these goals would be perceived by society. I was believing the narrative that he didn’t belong. That was my “stuff,” not his. I could choose to let these preconceived notions take over, or I could allow his life to unfold as the universe had intended. This was a big moment for me — working on myself, shifting my belief system, my awareness and attitude — so I could show up differently for Zain. It had to start with my own sense of belonging.

A sense of belonging to yourself gives you the ability to believe and embody this truth: we are all worthy of having hopes and dreams and goals for a happy and fulfilling life. No list of accomplishments required, not a certain amount of money, not a certain GPA, not acceptance into a particular social group, not physical beauty, not physical ability. Your definition of success is unique to you. I wanted Zain to realize his own worthiness within himself and in his family. If I didn’t, how could I expect society to feel he belonged?

Did this go smoothly? It didn’t. You’ve probably heard the phrase, “If you want to make God laugh, tell him your plans.” We struggled. I made bad decisions, got taken advantage of with useless expensive therapies, skipped doctor’s appointments because I didn’t want to hear Zain’s medical history repeated for the 100th time. I could go on. Zain did experience some of the difficulty the doctor predicted. He had several surgeries followed by long inpatient rehab stays. He experienced lack of belief in his abilities from so called experts. But he also experienced something else. Principals, teachers, coaches, therapists and doctors who shared our vision and were OK with saying. “Let’s see where this kid’s life goes.” We could also decide where we wanted to put our attention. How will we reframe some of the negative experiences? For example, Zain learned to trust that an incident of social rejection was a temporary feeling. Learning to allow yourself to feel the painful emotions coming up, and then allowing them to pass through you so you can have clarity to regroup. And then start again.

The concept of belonging and building the resilience needed to work through challenges is a daily choice and a workout for the mind and spirit. The more you build the muscle, the more ease you can find when things get tough. I don’t have everything figured out. I’ve taken risks and failed; I’ve been discouraged and tired; I’ve gotten sad that Zain needs to manage a lot more than many of his peers. Here’s what is also true: I keep showing up, keep learning, keep problem-solving and researching. Belief in my own belonging and Zain’s belonging remind me of our innate worthiness. Like a big floppy cushion you can fall into, belonging allows us to get grounded again so we can bounce back.

I didn’t need to learn how to belong. I needed to remember that I always did. .

“You’ve made this day a special day, just by being you. There’s no one in the world like you, and I like you, just the way you are.” –Fred Rogers