Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: All parents standing up for their celiac child.
Here we are on Day 2 of my Celiac Awareness journey and as I look through my backlog of emails, I realize that while many do ask me specific questions (which I’ll get to in the next 28 days), others simply want to vent.
And while some in the community may kvetch that I can be too negative, I also think these stories are important to share. It’s not all sunshine and roses out there in the celiac world folks and I think it’s imperative that people have an avenue to vent. And I gladly take on that role.
But what is my one rule? Let it out…then let it go. Don’t carry the anger with you. Life’s too short.
Anyway, what we have here today is a frustrated mom who is pulling her hair out because her teachers simply refuse to listen and take her child’s disease seriously.
Here’s your story…
When they got the biopsy results and we learned we had to cut everything our kid loved out of her diet we were obviously unhappy but at the same time thought we were finally seeing the light at the end of the tunnel. Fast forward two years later and I am now facing educating teachers about celiac, while fighting against the knowledge they were given by parents who’s children had tummy aches and were told to “try cutting out gluten”
There is a big difference between these children. My child was so malnourished by the time someone gave a shit enough to look into the issue, that she would scream with leg pain, was smaller then she should have been, etc. Upon diagnosis we were told to not only cut out wheat but oat as well because she was so sensitive. We were told to not let her touch gluten, play with play doh etc.
I have communicated this time and again to her teacher and yet, today I sit staring at a Christmas tree ornament she made me at school, and as she looks up at me proud of its beauty, my world has stopped. I am in some kind of out of body state and the only thing I see is the f’ing noodles that she glued to the paper.
I immediately think back to the week prior where I sent a note about another gluten filled product that had been smashed to pieces in her school bag when it fell off an art project.
Why can no one trust me? Am I not her mother? Could we not buy a gluten free noodle for the whole class or are normal noodles the only ones that stick to paper? [Dude note: I know it’s not funny, but that line still made me chuckle.]
Just because other parents allowed this in the past does not mean its right for my child. What part of no freaking gluten do you not understand? And for the love of God get rid of the playdoh or find some that’s gluten free.
And definitely stop telling my child that her mother is wrong and she is fine to play with it. I am slowly going back to feeling like I am the crazy one and in realty I am following doctor’s orders.
In the end, you are right. The more this becomes about weight loss and the cool way to solve a sore tummy, the more true celiacs (and their parents) will suffer. My hope is that by the time my girl is old enough to manage this all on her own that people will be more educated and the diet craze will be over. Until then…I’m off to get a letter from her doctor. Apparently my word means nothing.
Thanks for letting me vent….
One frustrated momma….
My advice for frustrated momma is plain and simple. Stay the course. Keep fighting for your child’s health. Educate and advocate as much as possible. Stay calm but stay focused. If your child’s teachers will not listen, take it up the chain of command.
And lastly…you’re not crazy…your child has celiac disease.