I feel a lot better now after expressing my “frustration” with our brief experience in public school. I needed to let it out. The previous post was mostly for me. This blog has been my therapy in a lot of ways, as well as a journal/gift to my son. A written record of his childhood.
I am going to make a big assumption that if you are a reader of this blog, you have a child, grandchild, niece, nephew, friend, etc. with celiac disease and you may have a similar experience, or heard of one.
Am I angry? Yes.
Can I understand? I am trying to. Please know that I am not making a blanket statement about all public schools. Nor am I trying to bash Sam’s former teacher, the administration or the staff. Well, not entirely; it is true that some of the staff were less than friendly. I know they are just trying to do their job to the best of their abilities, with all the red tape that goes along with a government institution. My mother-in-law is a teacher, I come from a family of public school teachers and administrators. I have friends who are public school teachers. I know how hard they work, for very little pay.
I also know that Sam was not this school’s only student. ALL children deserve special attention, regardless of medical status. A medical condition just intensifies all parents’ fears for their children when they are not with them.
I also want to express that Mike and I did not “just decide” to put Sam in private school. We are not rich. We are a part of the ever shrinking middle class, like so many other people. When Mike and I decided to have children we assumed that we would put our kids in private school. The reason for this is that we live in New Mexico which has for years been at the bottom of the food chain in state rankings of public education in this country.
If we lived in a different state with a better education record, we would definitely utilize public schools, as long as they could accommodate Sam’s dietary restrictions, etc.
Once I was diagnosed with celiac, (when Sam was 19 months old) and we saw our grocery bill sky rocket, along with the cost of treating my other celiac “sidekick” diseases that came with being undiagnosed and untreated for 15 + years, we saw our dreams of private school slowly slipping away.
We then looked into homeschooling. We joined a local home school co-op, went to home school conferences, had pretty much done everything except decide on a curriculum. Then it happened: the adult ADHD diagnosis. What I had long refused to admit to myself became clear. As those near and dear to me would remark with a chuckle, “I think homeschooling would be a mistake Heidi,” “You are not patient enough Heidi,” I just became more stubborn.
I know those comments came from the heart and were an attempt to save Sam and me from myself, or “Hurricane Heidi” as we lovingly like to refer to my alter ego when I am not on Adderall 🙂
Thank goodness I had encouraged Mike to sell our old house and move to a suburb where I had always heard good things on the public school system, “just in case” the homeschooling didn’t work out. So that is where we are now. Well, that is where we were Tuesday night.
After some very serious number crunching and evaluating the material things in our lives, what we want versus and what we need and hope for (like a safe place for our kids to go to school), we think we’ve found a way to make private school work.
To sum it up, our decision to finally send Sam to private school was not made in haste or because we are wealthy. Our family will be making major sacrifices to make this happen.
All states are different, all public school systems are different. And just because we lucked out with a teacher who is intimately familiar with celiac disease and the gluten free diet, does not mean that I will not be an active participant in making sure Sam stays healthy at school.
Had we not been able to foot the bill for private education, our next step would have been to make an appointment with the principal to discuss our concerns. We would have also contacted the Board of Education for our school district to fill them in on our concerns.
We, as parents, are our children’s advocates and in some cases their only voice. We, as part of the celiac and gluten free community have one voice, and that voice is getting louder by the day. If we all take the time and come together, contact our representatives, use our collective voice as one, maybe there will come a day in the United States where the words celiac disease are as common as a McDonald’s hamburger. Speaking of which, check this out, if you go to a McDonald’s in parts of Sweden, Finland and Norway, you can get a McDonalds Hamburger…bun included!
Don’t believe it? Check out Anna’s blog The Gluten-Free Me and you will see a GF McDonald’s hamburger with a bun!
Anyway, Check out the website for the National Foundation for Celiac Awareness (NFCA) for ways we can use our voice.
Just like the CSA’s Physician Education Program, why not do a teacher education program? Our teachers for the most part, are thoughtful and motivated people…let’s get some resources together to make it easier for them to accommodate our kids!!
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