3/18/2012

Good Gluten Grief!

We try to stay positive here at R.O.C.K.
It is even in our founder, Danna Korn's, whole basis for the approach we as ROCK parents are to take with
facing a gluten free lifestyle with our celiac children.
Positive thinking is the only true way to get through any struggle in life, be it: school, work, illness, etc.

We know that, but sometimes it gets complicated doesn't it?
Sometimes we don't all say the right things or we minimize the feelings of others. As a parent it is easy to allow the eternal kissing of boo boos to make it better overshadow the real feelings that our children are trying to express. We sometimes will minimize our children's issue by hushing their expression of feelings with either too soft of an approach or too harsh of one. The balance is hard to achieve, for sure.

Copyright Charles Schultz

The truth is that even when our children are being tough little soldiers about having to be different or eat differently, their comments during a R.O.C.K. meeting are usually not as blase about the whole experience. In fact, in a recent meeting we had a sharing time and out of 9 children, only 1 said she didn't miss eating gluten and we aren't so sure that wasn't due to her mom watching.

And why wouldn't they miss it? It is a loss of their normalcy and all losses create a grief process. Unfortunately, for those who cannot ever eat gluten again, no matter how long you have been gluten free, a challenge will present itself that makes you briefly revisit those old feelings of grief. And the gamut of grief can be over the loss of a particular taste you miss to a loss of not being able to participate in eating out somewhere with friends or family. For sure as time goes on and more products introduce themselves, our lives have gotten much easier. However, the mental and social stigma we can feel is very real.

So how do we get to a positive outlook on a daily basis, and more importantly, how do we as parents deal with our children's Gluten Grief? Here are some examples or tips that may help:
1. Join a Support Group - You are not alone and neither will your child be alone. Strength can be found in relating to others who have walked the same path.
2. Turn to Family & Friends - No one likes to bend anyone's ear, but opening up can allow healing and can educate others around you. Remember to end the conversation on a positive note without discounting the person talking.
3. Talk to a Dietitian or Health Coach - Nothing helps like getting a cheering section behind your accomplishments, a coach to push when needed, nor the ability to vent when no family or friends seem to understand.

All of this is a small part of a new presentation, "Good Gluten Grief", which has been developed for the Charleston and Charlotte Gluten/Allergen Free Expo . If you or someone you know would benefit from this presentation, please visit www.charlestongfafexpo.blogspot.com or www.charlottegfexpo.blogspot.com for information on how to register to attend.

3/07/2012

504 Plans, School & Your Celiac Or Gluten Intolerant Child

Very few of us as parents know what a 504 Plan is and how it can benefit our child if they have celiac disease or any other auto-immune disorder. I certainly didn't know what it was, nor did I want to go through more paperwork if it wasn't necessary. In the beginning of my child's diagnosis, I think we all just wanted it to go away and not be a handicap or make her any different than she already felt.
Statistics quote that 1 in 10 children are anxious while dealing with school and all the stress that occurs when they are behind the 8 ball already. Between parents anxious over grades and under achieving, and the pressures of socially fitting in to the over worked staff, who wouldn't be a bit anxious?

But for those who still don't know what a 504 Plan is, here is the textbook version:
The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and theAmericans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.

What no one tells you is that your success in achieving a 504 Plan will be largely dependent upon the County or State Government that governs where you live or what school system you are dealing with.
Hopefully you'll taking my adamant underlining as a sign of how truly frustrating this system can be. Because, if you can't get your school to even heat up your child's lunch, how easy will it be to get an approval which basically makes them accountable? Unfortunately, the majority have the same experience. The positive point we have learned is that at least smaller school systems can manage it better.
*Information on our site and shared by members of our support forums is not intended to be medical advice or to replace the relationship between a patient and his/her physician*