CF and Kindergarten
Last updated: April 2022
Our daughter, Margo, will be starting kindergarten in the fall. On one hand, this makes complete sense to me, and on the other, I’m in complete disbelief. How is she already in kindergarten?! I remember so many details my own kindergarten experience, and that somehow makes this milestone even more profound.
Because Margo has been in daycare since she was four months old, she is used to a structured day of learning and playing away from home. There will be a few things that are different, both for her and for us in preparing for her first year in school.
Margo's teachers have always distributed her pancreatic enzymes to her before snacks and meals. In her current Pre-K class, she has more independence because she goes to another teacher’s classroom to get her pills before she eats, Because of this, one thing we have really tried to instill in Margo is the importance of taking her pills first before eating and knowing what to do if someone offers her food. There have been times during out-of-routine birthday or holiday celebrations where Margo has had to advocate for herself and tell someone she needs additional pills. Fortunately, this has been a very rare occurrence. I remember when she told me this happened, I was in awe of her. She demonstrated such pride in remembering what we've told her and reminding her teacher.
We live in Pennsylvania, so per the state law, the school nurse will administer her pills to her. Learning the exact process and communicating it to Margo is the first step in the process to ensure we all feel prepared by the time the school year starts.
504 Service Agreement
This is a big item on my checklist and I’ll be honest—there's a lot I am still learning. I have so many initial questions: who is in charge of writing this? Who is it given to? What needs to be included? Is this done before or after officially registering her in the school? Should I schedule a meeting to discuss further? With whom? Do I complete a separate one for her after-school care?
At Margo's most recent clinic visit, I posed these questions to the team social worker, who immediately eased my worries, assuring me she will provide the necessary support in completing this paperwork.
I’d love to share more about this process as I discover more details and actually undergo the process of creating one, so watch this space!
One positive aspect of the pandemic has been normalizing masks for our family. Prior to Covid, we encouraged Margo to wear a mask in high-risk public places like CF clinic, the pediatrician, and airports. My husband and I wore them in support of her. Now, two years later, Margo wears a mask willingly to school and to public places. She knows it protects her and that right now she needs that additional protection. As we continue to navigate the pandemic and whatever happens next, I hope Margo remembers the mask is a tool she can use in the future to protect from germs, particularly during cold and flu season.
One positive thing about her kindergarten is that Margo will be allowed peanut butter. Of course, this could change if any of her classmates' has a nut allergy. For now, we rejoice at this news since Margo LOVES peanut butter and we love the fat, salt, and protein it provides. This will allow so many more snacks and meals that she enjoys at home, so we welcome this change.
I’m excited to continue to share our experiences with this community as we head towards this major milestone in my daughter's life.
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