Thursday, August 29, 2019

504 Accommodations - Sharing what we learned

Going to make this quick because it's been a long day. But so many of us are gearing up for our 504 meetings or wondering if we need 504 plans, etc. And I wanted to post what we learned recently.

And, if you're new to all of this -- start with this post: http://kroboths.blogspot.com/2018/08/504-plans-for-food-allergies.html

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504 Accommodations Update -- We have our 504 meeting for this year coming up. And, since we seem to be getting no where with WCPSS and our continued REASONABLE requests for additional accommodations for our nut-allergic 2nd grader, we sought the counsel of an attorney that specializes in this area.

Long story short, we will see how the meeting goes, get all of our ducks in a row for the meeting and if it doesn't go our way she recommends we file a complaint against WCPSS with the Office of Civil Rights that oversees the 504 area.

And by 'our way' I mean accommodations put in place as directed by our son's doctors for his safety.

PLEASE keep in mind I'm not a lawyer. I'm a parent going through this right along with you. I'm passing the information we gained along hoping it helps others. This is not official legal advice from me to you.

The biggest thing to consider, she pointed out, is this -- Is my allergic child as safe as all other non-allergic children in the classroom?

The Americans with Disabilities Act protects and enforces equal learning environment, within reason. Also, a question to note, Is my child's education being impeded by a lack of accommodations? These are the things that the Office of Civil Rights has to prove. And, if you live in WCPSS, chances are you have asked for the same things as us and been told no, no, no and false sense of security and can't make another child wash hands and etc. etc.

Of course, if your child has had a reaction in school, is experiencing anxiety or anything of the sort as a result of existing accommodations, those are important to note. Sadly, if our son had had a severe reaction we'd have better standing to ask for these accommodations. But, as I have said all along, I'm not waiting for him to have a life threatening reaction to get his environment as safe as possible. Plus, I'm not there all day. Something that I know is a minor reaction could have very likely occurred over the past two years and it went unnoticed.

Here are some tips I wanted to pass along as best I can --

  • Definitely have your allergist, therapist, psychiatrist, pediatrician, anyone who treats your child write a letter to the school states what is needed. This letter cannot leave room for interpretation or be 'recommendations'. It needs to be requirements for your child's safety. Requirements.
  • The safety of your child is determined by his/her doctors. So their voice here is critical.
  • Record the meeting. Don't ask. Just state, 'We are recording this meeting, as I'm assuming you may be, too.' and proceed.
  • Anything you discuss as a request, let's say washing table with soap and water... If they say no because blah blah blah. You repeat back. "I'm understanding you are saying no for blah blah blah reasons." (This reason may change once you note it back to them. I've seen it happen.) You want all of this documented.
  • Try to keep emotions out of it. Don't get into argument if you can help it.
  • Take guidelines from CDC, FARE, American Association of Nurses, highlighted specific to your requests with you. These are where they state they are basing their recommendations from.
  • Make sure you are leaving with not just a statement of eligibility for a 504 plan, but an actual 504 plan. (This happened to us.)
  • If you have what your child needs to have a safe, equal learning environment clearly stated and they deny the accommodations, you may file a complaint with the Office of Civil Rights.
Our meeting is in two weeks. Giving doctors plenty of time to write documentation and of course, it takes a while to get schedules to all line up for those that need to be in the meeting. We will see where we land with everything. I'm not hopeful based on history. But I do hear every now and then from another parent at another WCPSS school that got a tiny bit of something more added that makes me so happy.

Please reach out with any questions. Join ACE Advocacy on Facebook. I'm trying to gear up for some bigger approaches to everything and that's my 'home base'. The best way to reach me is through Facebook or email.

Hope this helps. And good luck! Prayers for all of you.


When will our schools prioritize health and safety?


Wake County Public Schools parents, you should be concerned.

And I say that not as an alarmist or as a 'helicopter parent' or as an allergy parent or as a worry-wart. I say that from the unique perspective of being the mom of three boys -- two in WCPSS public schools. One with life-threatening food allergies and both with celiac disease. My youngest is in preschool. I see the vast difference between the emphasis placed on health, safety and support between the preschool environment and that in the public school system.

Are we to assume once our kids turn five that health and safety are no longer a priority? That they should manage on their own and that expectation is okay? That any person in the building can do the job should the unthinkable happen? Because that's the message we are receiving from our schools.

I'm concerned for all of our kids, and admittedly especially for my food-allergic son.

He's seven. He eats snack in his classroom, often while working on an assignment at his table, while someone at the next table eats peanuts. A food that can kill him. An invisible amount of residue from peanuts or tree nuts can kill him. I apparently cannot ask that the other students wash their hands, as informed by WCPSS officials. And I cannot ask that his class space or their supplies be wiped down when the allergen is brought in. Again, told by WCPSS officials and backed by their 'guidelines'. Guidelines which reference the CDC, FARE, the American Nurse's Association and others - all which actually recommend a dramatically different approach to food allergies in the classroom.

So what can I do? Pray, keep fighting, pray some more, speak up and hope for change. For all of our little ones. Because fellow parents, there are other issues here, too.

Top of mind today - We don't have full time nurses in our schools. Our nurse to student ratio is not nearly what's recommended by again, reliable and respected organizations. This means a lot of things. This means if your child experiences a panic attack (as one of mine has), there is no nurse in the building with medical training to handle that situation. If your child experiences an injury or broken bone (as one of mine did), they aren't sent to the nurse. If your child needs monitoring for diabetes or any other number of critical medical needs, again, you may have a nurse there two days a week. A nurse who is busy doing paperwork. Your 'nurses' become the front desk staff and the teachers. Thank God for them, truly, but as a parent, I'm sending my child to be in the care of a school for the majority of their day. Why is there no nurse full time? We are upset if there is no foreign language teacher, but no one is upset about the lack of nurses? Does no one realize the situation? We need to speak up - all of us. Every. Single. One of us. Because if something should happen to your child at school, would you not want the best care for them until you could get to them? Of course you would. And it's totally fair to expect that.

Check out WTVD Channel 11's Troubleshooter report on the situation from today: https://abc11.com/health/medical-needs-handled-by-teachers-not-nurses-in-some-nc-schools/5500301/. Be sure to listen until the end, when the head of the Department of Wake County Health and Human Services (that manages the nurses for WCPSS) says being in schools full time is not the best place for the nurse (I'm paraphrasing, but accurate). I was honestly dumbfounded she said that on camera. Let her hear from us. I'll go ahead and give you her email address: rpetteway@wakegov.com. Teachers and administrators seem to be nervous to speak out. Until they do, let's write, shall we?

And let's move right along to the next issue that affects all students, again. Maybe you don't know this, despite my best efforts to make it widely known, but cafeteria tables in WCPSS are wiped with water only between classes. I found out while working on a health plan for my son. One in which I needed to get an attorney and a 504 Plan under the American's with Disabilities Act to get them to wash his space with soap and water to remove allergen residue. You know, to keep him alive. How is this sanitary? How is this acceptable to any of us? How is this acceptable to the school staff? To the nurses? To the school board? Soap and water. Vinegar and water. Diluted bleach solution (which could technically be consumed and still safe). But water? Has to be a joke, right? It's not. Here's the petition I created two years ago and presented to the WCPSS School Board (to deaf ears): www.cleanourtables.com. Go. Sign. Share. I'm not done with this fight.

There are other issues at hand. Lack of hand-washing procedures and guidelines. Candy and junk in the classroom as prizes or parties. Lack of funding for janitorial services regularly. And, the biggies I mentioned above. And if I sat and thought about it more (without getting myself more worked up) I'm certain there are others.

Our teachers need to be teaching. What they went to school for and are best at - what they chose to do and want to do. Not serving as a nurse or doctor. Our guidelines need to be reasonably protective of all of those with medical needs. And above all, just plain hygienic.

We focus so much on new curriculum and schedules and cramming developmentally inappropriate lessons on our kids. Because that's what our teachers are being forced to do. Where is the focus on health and safety? Where is the needed time for their overloaded, growing minds to just be kids and play safely? Where is the security of feeling safe when they are around something like an allergen that could kill them? Where is the very important life lesson of taking care of our bodies? Where is the lesson of community and protecting others? Where is the trust that if they need someone medically or mentally to help them, that someone qualified and trained is there? How can my child, or yours, be expected to learn anything when they do not feel safe? Or when they are sick constantly as the flu and norovirus rips through the school? It's all maddening to me.

Priorities are so wrong in so many ways in our schools. We can be upset about testing (and don't get me started on that). But we should also be upset that the very basic needs of health and safety and security are not being met. And that, my friends, is how I feel about that.

As we start a new school year, let's all rally together and push for change. Hold those holding the reins accountable. I, for one, am so tired of fighting something that seems so obvious. But I won't stop. Not for my kids and not for yours, either.

Rant over.

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Please join me at one of the following Facebook groups:

Families for Food Change in Wake County
ACE Advocacy



Monday, August 12, 2019

An open letter to Bojangles from my 7-year-old


Bojangles, Bojangles, Bojangles,

I know you're out there. And this letter is for you, from my son Elias. And also from me, as his mother.

You see, Elias has life-threatening food allergies to peanuts and tree nuts and also celiac disease. Prior to his celiac diagnosis last year, Bojangles was his favorite place to eat. The fries. The chicken supremes. And the biscuits. I'd buy a dozen and he'd eat them constantly.

This kid has handled his restrictions like a champ for years. But I dare say one area he constantly has trouble with is giving up his 'Jingle Bells' (his name for you when he was younger).

He's asked me to find matching recipes. He compares any and all eating out experiences to how it tastes compared to your fries or your chicken or your biscuits. I've tried so many things, and still, while coming close it's never just right. Bojangles right.

He brought this all up again last night for about the 7,000th time. And I said, "You should write them a letter and tell them how you feel. It's always good to share your thoughts and suggestions with businesses. They may not be able to change anything, but they will at least hear from you. And I'll help."

Today, I pick him up from school and he says, "I started my letter to Bojangles during quiet time today. I will finish it after homework and then you can take it to the one Bojangles we usually eat at. What do you think they will do?"

I just, again, encouraged him to express himself. And we'll see what happens. He made sure the envelope was Bojangles yellow. And that he signed it as 'fan' so you wouldn't know his real name. (Which, is pointless now that I'm hitting up the interwebs with this letter.)

But, Bojangles, if you're out there and listening, I'm not expecting you to change a thing. You are so good at what you do. And with celiac disease myself, I so miss those biscuits. You are a raging success because you do what you do and you do it well.

However, for those of us (and there are millions) struggling with food allergies and diet restrictions for serious and life threatening reasons, will you let my son know you hear him? Is that possible? It would mean the world to him. Truly. (And to this mom, too.) We deal with a lot of 'no's' and 'can't go there's' and 'you must eat this instead's' and in reality, just knowing we are heard and loved and respected can mean as much as the food itself.

Here's your letter, Bojangles. And in case you don't read 7-year-old writing, I'll transcribe for you. And if you want to reach out, feel free to contact me. (He spelled our address wrong anyway.)

With love for my son and his will to speak out and be brave,
Kira Kroboth




To: Bojangles
From: Fan :)


I love your food. But now I can't have it. Because of gluten.


(heart),
Fan


[portion of our misspelled address]


Make something gluten free. Please!!


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