I honestly never set out to be an advocate for children with special needs, or even a children's book author for that matter. But, I think like most people who find themselves passionate about a cause, it started with just one person.
In the spring of 2014, I was finishing up my Master's degree in Sociology. My nights were spent neck deep in research on teen parents and reruns of "16 and Pregnant", and my days were spent working with kids in real life as a nanny. I was working for amazing people, who treated me like a part of their family, definitely one of the perks of the job for a small town Michigan girl with no family in the city.
The Nelson's (Kim and Justin) had an almost 2-year-old son and a daughter on the way. In the biz, we call this 'job security'. Everything was going pretty smoothly until one weekend about a month before their due date. Kim's water broke unexpectedly, and Emma was delivered via emergency c-section. After an uneventful pregnancy, we were all surprised to find that Emma had some difficulties following delivery.
At first, it was the physical things, doctor after doctor examining this poor little newborn. Terms like, 'truncated', 'trisomy', and 'decreased life expectancy' started coming up. The Nelsons were originally told with 90% certainty that their daughter had Trisomy 18, a chromosomal disorder in which only about 10 percent of children reach their first birthday.
After what seemed like an eternity of waiting for test results (but was really about a week), Trisomy 18 and a host of other disorders were all ruled out. We began to accumulate a list of diagnoses and disorders Emma didn't have rather than figuring out what she did.
Eventually, Emma came home, and without a diagnosis to help explain what was going on with Emma, we did what we had to. Which was accept the unknown and move on in finding a treatment plan that focused on Emma, rather than a diagnosis.
If I'm being honest, I felt pretty hesitant about becoming a caregiver for a child with special needs. After all, I didn't know the first thing about feeding tubes or the variety of therapies Emma would need. But, as I assume most parents and caregivers of children with special needs discover, the basic requirements aren't that different. Emma didn't need me to be an expert on physical and occupational therapy, she just needed love, patience, and guidance, just like any other kid.
Even after learning to join Emma where she is (instead of dwelling on what is or isn't to come), I still found myself spending nights thinking about Emma's future. This time, from a social level. I knew Emma would have all the love and guidance she needed from her amazing immediate and extended family, but how would other children react to Emma? What would her first day of school be like? How do you explain to children that young that sometimes people just look and act different, for no reason other than that's just who they are?
So this is why I wrote Emma Goes to School. Inspired by all my concerns for Emma's future, I decided to imagine a fictional world in which children's anxieties about being different were put to rest, and each and every character learns to love and own their differences and those of others. I wrote Emma Goes to School to inspire Emma Nelson, to show her that her differences are beautiful, and make her special and different, but never less.
If this book could communicate that message to even one other child struggling with anxiety over their differences, then it will the second greatest thing I have accomplished in my life (after becoming a mother).