It is not uncommon for a parent who is preparing to send their child off to kindergarten to be overwhelmed with questions and concerns. Will my child make new friends? Will they get into trouble? How will they adjust to being without me for the day? For a parent of a child with disabilities, there is a different level of anxiety. Will my child be picked on or excluded? Will the teachers know how to address their specific needs? What if they get sick and I’m not there? For Julie, sending her six year-old daughter Emmaline to school for the first time was an emotional experience. At first glance, Emmaline looks like your average six year old; and in many ways she is. Her bright, carefree smile and silly expressions have her family describing her as “a kid who makes you happy to be around her”. However, Emmaline was also born with spina bifida, a “snowflake” condition in which no two people are affected in exactly the same way. And while Emmaline is fortunate to have unassisted mobility, she is not without challenges including a shunt to treat her hydrocephalus and a neurogenic bowel and bladder. Having been under her mother’s care until this transition, these challenges were important to address prior to the start of school on August 19th.
Julie accredits Emmaline’s school for being proactive and accommodating of not only Emmaline’s physical needs, but her emotional needs as well. During a planning meeting, Julie was led on a tour of the classroom by Emmaline’s teacher to get a feel for the setup and identify any barriers. These included magnets, tablets, and headphones that could be damaging to Emmaline’s programmable shunt. In an effort to avoid any feelings of exclusion or risk to Emmaline’s shunt, her teacher took it a step further and decided that no one in the class would be using headphones this year and there will be a designated area for tablets and magnetic items. Movement accommodations, breaks for Emmaline, and a cathing schedule with the school nurse were also put in place. ”Julie is on the right track”, says Terri Doerr, Parent Mentor for Lakota Schools. “Creating a trusting partnership and open communication with the school staff is key to meeting the needs of your child in the classroom. Making sure the teacher, nurse, or aid knows that they can contact you with any concerns they have will allow you to solve the inevitable issues that will arise together.”
Even with the careful planning and thoughtfulness of the school staff, there have been a few seemingly unavoidable bumps in the road that required retraining and further discussion. Emmaline contracted her first bladder infection in four years due to the changes in her daily cathing routine. She has also faced questions from other kids about her differences, which can often be difficult to answer. Julie reminds us, “Kids are curious. It is important for parents and teachers to educate their children on all of our differences.” Creating an environment of compassion and inclusion is just as imperative as acknowledging the physical needs.
Despite the few hiccups, Emmaline is thriving in her new environment. When asked how she is enjoying kindergarten, Emmaline replied, “It’s fun! I like recess and I like to meet new people. But I’m tired.”
For Julie, the Spina Bifida Coalition of Cincinnati has helped her prepare for this day. “SBCC has been wonderful and very helpful since early on- not just the staff, but all of the other families. I constantly use it as a resource for myself and it’s such a support. Kids who are born with any type of impairment are so resilient and so brave.”