My son Jacob is 3 1/2. He will be turning 4 in early September. I have been having some anxiety since LAST August about the idea of him starting Pre-K. I have had “Research schools for Jacob” on my to-do list since then! My anxiety issues are compounded by his health concerns. Jacob is a cancer-kiddo, and chemo has a lot of post treatment side effects that can occur, plus the risk of a cancer-relapse. He also has EoE [Eosinophilic Esophagitis], and a feeding tube, along with an extensive allergen list to basically ALL food. He has had anaphylaxis from baked egg, and is highly allergic to many other ‘common’ foods. I decided I need to start looking into what our options would be regarding his education. I have tried searching the web to look for education options and plans for children with similar issues, but found very little out there. So what are the options? I know many -if not MOST- EoE families chose to do home-schooling. There is private or public school, or a day-care/Pre-K type of program either run from someone’s home or business, or perhaps having a teacher/tutor come into our house. But what were the pros and cons of each of these? What other kind of options may there be that I have not considered?
I have started tackling the information gathering by first meeting with our principal from the public pre-K school. At this initial meeting I wanted a chance to meet, share my concerns, and let him meet Jacob too. Now, Jacob would not be eating at school- since he has a feeding tube and will only be ‘at school’ for 3 hours. The Pre-K class is Monday-Friday, either 9 AM-12 PM or 12 PM -3 PM depending on which program he gets into. Our school program is federally funded, which means that they must provide a meal, so both morning and afternoon classes will have a meal- [breakfast or lunch]. Additionally, due to space constraints-and because the Pre-K program is run from a school with 3rd and 4th graders, these meals are being served IN the classroom! In each classroom there are 15 4-year-olds eating all the foods Jacob is allergic too, TWICE a day! [Ok, breathe!] Another concern that would need to be addressed is that a large part of the curriculum being used for this class is FOOD based projects! ie: Making gingerbread houses and decorating with candy, build an igloo out of marshmallows making ice cream in the classroom, etc.
The principal is genuine and caring, I know he appreciated my concerns and that I was coming to him now to start looking at what kind of plans or accommodations we need to come up with. One option he is going to look into for us is contacting Child Developmental Services to find out if they can provide an aide to be with Jacob every day – to look out solely for him. If he qualifies for such an aide, what training do they have? What if they are out sick? Could this potentially make Jacob more of target to get bullied later? Addressing the meals being served in the classroom is another more tricky issue, but now that it’s on the radar, I think the principal will be able to examine if there are any better options. If there are none, then what will need to be put in place to contain and minimize the risks? Let’s face it- 4-year- olds are not always the neatest eaters. The chances are significant for spills, crumbs, and cross-contamination! The food in the curriculum will actually be easier to address if they simply get rid of it! As a food allergy parent it is scary to me to think of so many 4-year-olds who could potentially have undiagnosed food allergies, getting so much food exposure in school! It’s no wonder 1 in 5 kids with food allergies have reactions at school! Of course Jacob will need to have a 504 plan before entering school as well. I realize that when he enters Kindergarten I will need to figure out how to get his tube-feedings done during the day, while ensuring there is no exclusion.
I have a few reasons why I want him to be able to attend the public Pre-K program. They are :
- Jacob WANTS to go to school!
- To learn the socialization skills that school can provide.
- To make friends who will, as they go through school, become allies in keeping him safe.
- I do not feel confident in my ability to teach him the newer techniques of the standard based learning now being implemented.
- He is entitled to receive an education.
- He can have a 504 plan to address needs.
- If he – and his feeding tube – are introduced while his friends are younger, it is my hope that there will be less negative reactions and more positive acceptance among his peers.
- We will not have to pay for it out of pocket- [any private or day-care pre-K will be at our expense].
My cons list include:
- My Fear: Can he really be safe in a public school environment?
- Jacob will be a very young 4 year-old; Do I just wait another year before sending him to school?
I will be examining all of our options over the next few months, and with hope I will also conclude with a reference page about school options with pros and cons for each. What are your thoughts? Are there other things I have not considered with the public school option?
Ironically shortly after posting this I came across these articles!~
- What Are Reasonable Accomodations For Food Allergies?
- Boy with Life-Threatening FOod ALlergies Attends School Remotely Thanks to New Robot
- Robot-avatar Helps Sick Boy Attend School