I am writing more or less to share my feelings, in hope

I am writing more or less to share my feelings, in hope that it will help me in some way.
I have just about given up on life. We have been dealing with PA and former TN allergy since my son was around 3 years old. He is 13 years old now. We pulled my son out of K in the middle of the year when he was 5. We homeschool out of necessity. Even the OCR out of Texas would not help us. The sup. of the school system here basically called and lied. That was long ago and we moved on.

We live in a very rural community with almost no one EVER understanding this allergy. We are Christian and can't even get churches to work with us. They act as if we're nuts or something. We have been involved in a homeschool group, but the moms were always too scared for my ds to come over without me. Now that he is older, it is still sort of that way. Too scared!
His allergy has improved. He has gone from a 4 to a 2 on the scale and he can eat pecans now. We are still unsure about the other nuts. He is negative in blood tests and doc encouraged us to try the nuts on our own. We have not been brave enough yet.

You would think that after all these years, we would have gotten use to all this, but I think it gets worse! I'm happy of the improvement, but as far as society, we are pretty much on our own.
Truth is, I don't have much in me left to keep fighting this without almost having a mental breakdown. I am really struggling lately! It helps to at least come here and spill it all out. Thanks for taking time to read and I would appreciate any gentle support.

By homeschoolmom on Fri, 08-01-14, 04:27

Well, I had a long response typed out and have no idea where it went???
For the most part, I am better. I appreciale all your kind words and helpful suggestions. You all are great! :-)

It held me to know thatwe are not the only ones!I am going to try a lot of your suggestions because I really do need help in dealing with the stress!Praying food allergies will one day be a thing of the past!

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By GrownUpLaurenMom on Mon, 07-28-14, 03:51

Ugh. I really feel for you. I'm sorry you're feeling so very stressed. It really is difficult. We have seen it as well. Maybe not to that extent but we have seen it but I think I may have an inkling about what you're going through.

You mention you were Christian. We had difficulty with religious ed classes but what got us through religious ed classes and support from the church was when I asked them a simple question. I asked them for an honest answer to the question, "What would Jesus do?" (and I think I mentioned lepers) and with that, they softened. They were willing to listen...to what her life..what our life was like. Since it softened them so quickly, might that be something you could try, if you haven't already?

I found the School Food Allergy Program from FAAN to be a very big help. Have you seen it? It is all about the allergy, about statistics, facts, the law...all right there in black and white. When showing it to others, it seemed as that because it was right there in black and white, they were more willing to help out.

One final thought. Do you have a fire department or are you in a volunteer area? We went to our fire department and spoke with EMTs. They said anaphylaxis is their most serious call. They take their jobs so very seriously (as they should) and they actually said that if we needed help talking with the school that they would back us up 100%.

Hang in there. All will be OK. We are all pulling for you.

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By mom1995 on Wed, 07-23-14, 00:47

I can more then understand.... been there done that. Also a TX no help parent. It was very frustrating. So getting it out even here is helpful. The road has definitely changed since dd started K 13 years ago to her graduation. We fought everyday sometimes but she went. Even when she wanted to quit we didn't let her. There were times when other mothers would say "That's not my problem it's yours." When a school nurse told her "If you're really that allergic then you should be home schooled." When a teacher refused to remove her can of almonds and told the school to take dd out of her class. So yes it is frustrating but know that every step forward makes a better world for your son and for those following behind him.
Educate the uneducated the best you can, correct the mis-informed and hold them all accountable. It took a letter to one principal informing him that if one incident happened in his school I would be holding the isd, the school and him personally responsible for it. I did have to file a complaint with OCR and they found the school was not honoring her 504. Had I not ensured she had one there would have been nothing they could have done. Take that passion and 'momma bear' will and start setting people straight. There are people who will support and care for your son as their own. Those are the people you truly want in his life. From middle school on we had a requirement for a friend..... Are you willing to stab an epi-pen in her leg? Here is a practice pen. By high school she was in control of her allergy and she took no crap from anyone. She found her voice when it came to her allergy and she would do what she needed to remain safe. I knew then she would go out into the world ready for all the great adventures that await her and ready for the stupid she will encounter. Sounds like you are doing much the same. Even those little battles will teach your son to fight for what is right. Right is right. Just that simple. Keep coming back and keep sharing. Some where out there is a new mom to the allergy world and you just helped understand she is not alone. ????

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By smithdcrk on Wed, 07-23-14, 19:22

Loved your "... willing to stab an EPI pen in her Leg?"

One of out tests for babysitters was whether they would be willing to face down an EMT crew to make sure our girl went to the hospital for observation even if she "looked OK now."

How did we know who made the cut? The ones who smirked knowingly and whose eyes lit up at the thought. They were the Guardians.

We don't need babysitters anymore, but like your daughter, she has some close friends that will stab her if needed ... and they definitely meet the "face down the EMT" test.

By LGriffin1 on Mon, 07-21-14, 22:25

I know the stress is tough. I know it was hard for my parents to let go but 13 was when I was responsible for preparing my allergy safe meals, talking to friends parents, even making my own Dr appointments. Even now, I'm 31 and have days where I just want to cry but I choose to get involved and keep educating. Through combined efforts, a convention I work for created a whole new department for those of us with various restricted diets. Through all the previous work and basic plans, I'm the department head. When you think it's for nothing, there is a difference even with one person. Having worked with other companies, I'm the reason a safe food rider has been created. I had a bit of a it's all for nothing and several folks reminded me, that I'm making a difference. I'm not going to say, it's not exhausting, it is. But if your sons friends understand, that's at least a few people. I was 15 when I added peanuts to the existing list of allergies. It was a minefield, the school wanted to isolate me, but I refused. I talked to my friends, I ate at the edge of the table and they created a buffer for me. I layed my food out on a paper bag to act as a disposable placemat. Some people will never understand how severe an allergy is, and sometimes when it's family, it's time to limit the interactions. Your son is old enough to be able to advocate for himself, but it's not a bad idea to have an adult back up a teenager making good decisions.

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By smithdcrk on Sun, 07-20-14, 21:18

My heart goes out to you. We have a "PA former TNA" teen in TX public schools. It is a struggle and at times overwhelming. Not everyone is sympathetic or helpful - some are just mean. I have been the OCD/Hyper Mama on the Food Committee. I have been so frustrated that I rant and rave - at home - and then must jump back ready or not. Being part of a community like this one is very helpful. You are not alone.

First and foremost, sounds selfish, but are you nurturing yourself? You mention your Faith. Can you give yourself 15 minutes a day meditation or prayer? Have you found a Church that you feel welcome. Even if their nut education is not up to snuff, is the feeling good? I once volunteered to make snacks for VBS - and after discovering my quirky food prep habits they put me in charge of the "allergy kids." I met other mothers dealing with the same things I did, and was able to do an informal mini-allergy support ministry that week. All kids had the same snack building blocks that week!

Your homeschool community might be the best place to start. There are a variety of reasons people homeschool, this type of group is often open to alternative views. I have seen Austin Area Homeschoolers at tournaments. They are some of the nicest, kindest, creative spirits I have ever met.

Your son cannot go to their homes without you? Bring them to your home for an Allergy Retreat. Let him take ownership. The best way for others to trust themselves with him, is for him to show that he can operate independently & safely and he knows what you know.

He (and any of his friends) can create classes:
"What is an Allergy?"- MS/HS Biology lesson. Would your Doc come?

"Allergy 911" - Signs and Symptoms, how to use an EPI pen, take out those trainers that accumulate with each refill (depending on the maturity of the group, your son can plunge expired injectors into oranges) Connect this to Scout merit badges if there are scouts. My daughter used to demo the trainers on her dolls. Some still bear the circular scars!

"Survival 101" - Snack Break! The Care and Feeding of ... Serve safe foods (fresh fruit, oreo cookies, chips) that come from the grocery store (not homemade that's where some begin to panic) on paper plates; send them home with a short list of PN&TN free options.

If the kids have a favorite theme (anime, computer programming, video games ...) or character (Daniel & the Giant, Moses, Harry Potter, Iron Man, Hobbits, ...) let that inspire them.

Last but not least. For all my bravado, I am a scairdy cat. Even when my daughter's TN numbers dropped to normal levels, we still did the tree nut challenges in the doc's office during regular business hours.

As my daughter tells everyone, "I am allergic to nuts. Except for the members of my family!"

By smithdcrk on Mon, 07-21-14, 16:33

My kids reminded me about some of our build birthday parties we hosted (always at home due to allergies). I set a task and gave each team a grocery bag of random items (rubber bands, balloons, sanitized meat trays, paper towel rolls, water bottles, etc.) - all found, recycled or repurposed. Many of the mothers and neighbors helped with collecting supplies.

One year we had a severely allergic child at the party: asthma, TNA, PA, egg, oatmeal. He could come to our house because we were already P/TN free!

The task that year was to see who could launch a peanut - A PACKING PEANUT - the farthest. It was so much fun to see their creativity. We had launchers, blowers, and the bizarre. All worked! The winners were the "Little Sisters" group. They put the packing peanut into a balloon, filled it with air and let it go. Whoooooooosh!

My son's friend really enjoyed an exercise where he could play with "peanuts." His mother called later that night laughing: "Mom, I made a peanut launcher today and it was fun!" She told me she immediately pulled the car over thinking how could the SMITHS do that?! Fortunately, before she grabbed the EPI pen she looked at his smirky little face. He had kept one of the packing peanuts and wiggled it to show her. For him the launching freed some pent up stress that was with him each day. I think he built one at home, too.

I tutor at the Middle School, I know few 13 yr old boys that can resist a launch project. Packing peanuts are so light that no one can get hurt. If you or the others don't have any floating around, some place like the UPS, FedEX that recycles peanuts may give you a free handful of you explain your plan.

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