One year ago, I held onto her sweet little hand and walked her through the doors of her new school.
Brenna began that first semester with a two-day-a-week schedule, as we wanted to ease into everything. We knew her little body would be exhausted (and were a little worried about what that might do to her immune system), and functioning in the school environment with her rare condition was completely new territory for everyone involved.
Two months before Brenna began school for the first time, we held her IEP (Individualized Education Program) meeting to plan and prepare for her educational career and goals. An IEP is required for every child who receives special education services (as per the American with Disabilities Education Act), and it dictates the child’s educational needs and goals and how those will be met and measured, as well as any other services needed and how those will be provided.
We have heard the stories of families who have had to fight for services with schools unwilling to meet their child’s needs, but we have gratefully had the opposite experience with our district. They have been willing to meet needs that we didn’t even ask for, to ensure Brenna’s health, safety and success.
Within her IEP, we have not only educational and therapy expectations and goals, but also many health and comfort standards in place as well. Brenna has a minimum and maximum temperature for when she is allowed to play outside, and there are plans in place for when a fire drill occurs and the temperature outside is not safe for her.
Because germs are a major threat to her health, all of the children in her class are required to wash their hands upon arrival. Brenna has many of her own classroom tools, such as her own sensory bins and paint, so that she can participate in the learning experiences without being exposed to the germs that go along with lots of little hands. The staff has procedures in place on what to do if Brenna is too hot, if she is scratching her skin, when she needs to use the bathroom, if she is bleeding or gets hurt. And because she needs extra hydration and nutrition, the teachers are vigilant about making sure she’s drinking and eating a lot. The class always has snack time, and we also send extra high-protein snacks to school with her.
The most important thing we did was trust our school staff implicitly. We worked through very specific details before she started, including lots of phone calls with the school nurse to cover as many scenarios as we could think of, and we addressed any new questions that arose with each new day.
During the first week of both semesters, I wrote a letter that was sent home with the parents of children in Brenna’s class, explaining her condition and answering any questions I thought might arise at home from her classmates. I heard from several of these parents that the letter was well-received and helpful. I offered to go in and talk to the class directly, but since none of the kids expressed concern or questions, we didn’t feel that was necessary at this point. In fact, I have been so thrilled to see how easily the kids have accepted her skin differences.
Emotionally, it took Brenna a while to warm up to school. Or at least, to drop-off. But she hardly gets upset anymore, and at the end of the morning, she bounces out of the door, telling me what the class made that day (and what she made for us!), or who she played “housekeeping” with, or who needed a bandaid (that’s a hot topic in preschool).
Brenna now receives therapy through the school – occupational, physical and speech – and her therapy team is just wonderful. They all have found a great balance between allowing Brenna to explore what she likes and is interested in, and pushing her within that to achieve goals.
Overall, going to school every morning with a class full of peers has been a huge driving factor in Brenna’s development. Because of school, she likes to drink whole milk now (woo hoo!). Because of school, she is learning how to handle herself in peer-driven situations. Because of school, her boundaries are being pushed physically as she sees her other friends doing “big kid stuff” and she also wants to “do big kid stuff.” Every day now, we hear “no, I can do it myself!” about everything from getting out of the van to getting her own fork for lunch.
As we navigate these unchartered territories together with our school district, we’re so grateful to have a team of educators, administrators, therapists and fellow parents who have been wonderfully supportive throughout the last year…If this past year is any indication, there is a lot to look forward to as Brenna continues to thrive physically and academically!