Sending your first child off to Kindergarten is a big deal, am I right? It definitely was for me. Kelsie went to preschool the past two years and was definitely ready for this new adventure but there were still many elements of this new transition that took a lot of thought and preparation.
The first was decisions. Around the spring of last year, my husband and I started talking more seriously about where we should send her to school. Public school always felt like a no-brainer for us on many levels. But because she has CF, we felt we needed to put more thought into other options. We felt that a smaller school may provide more one-on-one attention and less infection risk so we put our name into a lottery at a charter school but didn’t make it in. We also looked at a private Christian school but recognized our main motivation for putting her there would have been fear and we didn’t want that to be the driving force of this decision. Homeschooling crossed my mind but ever so briefly! I do not believe God equipped me with the qualities it takes to do that job, especially with a 1 year old crawling around, but Kudos to you mamas who do it! (You totally impress me!) So, we ultimately decided to give public school a try. And so far, we have absolutely no regrets!
The transition has been seamless so far! I met with the nurse about a week before school started and she was AMAZING! It was the most positive and supportive conversation I could have imagined. She brought Kelsie’s teacher in as well so I could have a chance to discuss the ins and outs of managing Kelsie’s illness with her before school even started. Our CF doctor also wrote a letter which was key in educating both the nurse and the teacher about the complexities of CF and how it might affect her at school. I emailed this letter to them before the meeting so they could have a chance to read over it beforehand. This letter was phenomenal and took so much of the work out of my hands, which I greatly appreciated! I assumed I would have to do my own research and provide all of this information myself (the CFF is a great resource and has premade generic school letters that you can use) but our physician and social worker assured me that they would provide the letter and help in any way they could to get Kelsie settled into school.
If you are reading this and have a child with CF starting school, I would recommend you ask his/her physician to write a letter as well if they haven’t already offered this. I imagine most CF centers do this, but in case they don’t, it would definitely be reasonable to ask for one. Here are some of the highlights of this very thorough letter:
- It described the pathophysiology of Cystic Fibrosis and how it increases the risk for serious respiratory infections, requires high calorie, high protein diet, increased caloric intake, and possible hospitalization in the event of symptomatic flare ups.
- It discussed Section 504 of the Rehabilitation Act and how children with CF qualify for accommodations in the education plan due to the impact this disease has on the respiratory system.
- It explained the need for pancreatic enzymes and recommended that she be able to self-administer her own medication. It also mentioned allowing extra time to finish her meals, providing extra snacks if necessary, salty snacks following physical activity that causes her to sweat, the need to drink plenty of fluids, and to have unrestricted access to the bathroom.
- It detailed the absolute need to keep two students with CF away from each other if there is more than one student with CF at the school. (Thankfully, Kelsie is the only one with CF at her school this year.)
- It explained the need for quarterly CF appointments which will affect school attendance and it also requested allowances for tardies as it takes us longer each morning to manage her CF needs.
- It made the request to sit Kelsie elsewhere if a student seated near her is showing any signs of a respiratory illness (sneezing, coughing, runny nose) and highlighted that point that every CF parent worries about: “a cold that lingers may result in lung inflammation and infection which will require hospitalization for several weeks to administer intravenous antibiotics.”
- It discussed the need for tutoring services in the event she is hospitalized or homebound receiving IV therapy.
So after giving the teacher this 2 page letter to read, I later reassured her that while the disease is complex, having Kelsie in her class really should not be that much different than any other student. I did not want to scare her or make something bigger than it is. The reality is, she is a normal kid and right now, she is not sick! I made sure to emphasize that beyond a few extra things necessary to care for her CF while at school, she should not be treated any differently than her peers.
The biggest need for managing Kelsie’s disease on a daily basis is making sure she takes her enzymes before she eats. And my request was that she be allowed to carry her enzymes in her lunch box and backpack and self-administer them before eating her lunch or snack. She is very capable of doing this, has been swallowing the pills on her own for a year now, takes them independently before she eats, and understands how many she needs based on what she is eating. I have two little easy open pill containers where I pack Kelsie’s meds for the day. I put 4 in the container in her lunchbox and 2-3 in the container with her snack in her backpack (amount depends on what she has for snack that day). I left a bottle of enzymes with the teacher and one in the office in case I forget to send them or they get dropped on the floor. So far, this has worked out perfectly with no issues. We did not want her to be singled out every day to go to the office to get her medicine. We also did not want her going to the nurse’s sick room where all the other sick kids go – that sure doesn’t make a lot of sense in terms of infection prevention! So, my independent and capable 5 year old is giving herself her medicine every day without me there. And I couldn’t be more proud of her!
Another concern at school is hydration and nutrition. I wanted to make sure that Kelsie would be able to access fluids as much as she needed and have snacks if she needed them. The nurse and her teacher have been wonderful about this as well. I pack Gatorade in her water bottle every day (while it’s still so hot and humid out) and they take their bottles out on the playground with them. Having access to water bottles on the playground is a great idea for all kids but it is even more of a necessity for little ones with CF who dehydrate more quickly. In Kindergarten, they still have a snack around 2pm so we haven’t had to add in an additional snack at this point. If we find that her weight has been affected since starting school, we can adjust this plan accordingly to make sure she is getting in enough calories.
Infection is obviously at the top of our list of worries. But ultimately, germs are everywhere! They are on the grocery carts, the swings at the playground, and even in the smaller classrooms at a private school. If I am going to let her live a normal life, which is very important to me, she is going to get sick. She is going to get colds this winter regardless of where we send her to school. Hopefully she will easily be able to fight them off without too many issues but if something more harmful comes up, we will deal with that when it comes. I have learned, there is a time to just let go of things you can’t control and focus on what you can! Right now, I can’t completely control the sick kids she is exposed to or the viruses lingering on the door knobs, water fountain, or in the cafeteria. But I can teach Kelsie the importance of good hand washing, help her be independent in caring for herself, educate her teacher about her illness, and ask that she keep her away from other sick kids as best as possible.
Before I wrap this up, I do want to make sure I point out that I am in no way making a statement that everyone should go to public school or that it is the right decision for every kid with CF. It just feels like the right decision for us at this time. This is certainly a personal decision and every family has their own reasons for why they choose one school over another. We are only 3 weeks in on this experience so I admit, my opinion may change in the future if problems arise. But right now, I am happy with where we are at. I believe in public school education and Kelsie is thriving in Kindergarten and absolutely loves her school. She came home the 2ndweek of school and said “Mommy, my Kindergarten is the BEST in the whole world! Thank you for signing me up. I just love it! I love that whole big school so much!” And for now, that is the only affirmation I need!