It started last school year. It was the first time that our son would be in school and the first time our daughter would be in school with CU at the start. She didn't develop the condition until a month left of the 2010-2011 school the year. After she went into Anaphylactic shock at school in 2011, I knew we needed to make sure the school new what they were dealing with, instead of brushing me off like they did when our daughter was first diagnosed. So we called the nurse and explained the situation, and she set up a meeting for everyone to get together before the 2012-2013 school year started. We had meetings with the schools on what to expect and brought pics. We left the meeting feeling comfortable, thinking they were fully capable of handling the situation.
School started, and we had an emergency action plan, medication documents, and all the paper work the Dr. needed to fill out,. On the first day of school, wouldn't you know our daughter had a reaction. They called us, and after going to the school to check her out, I brought her home due to the fact that after 45 minutes of Benadryl in her system the rash was spreading. Things went well I thought, and when the Dr. sent a letter to the school saying our children would not be there in single digit weather, or allowed out for recess at 32 degrees or below, the school told us we needed a 504 plan. Great! They are looking out for us right!!!??? How awesome are they! We had the 504 meeting and everything was there in black and white, with everyone's signature. We skipped off thinking what a great school district. But soon the problems started.
The weather dipped lower and the kids were missing weeks of school at a time. We noticed there wasn't make up work coming home, and called the teacher. She informed us that our daughter was doing her makeup work during recess when she couldn't go outside, and that she was completely caught up. Report card day was fast approaching, the quarter had changed and my husband takes our daughter to school, when he is caught in the office by our daughters teacher. She had a stack of paperwork, and I am not even exaggerating here, about 2 inches tall. She then proceeds to tell him, that our daughters report card will be full of incompletes, because this makeup work was not done. We were dumbfounded and he asked why she told us that our daughter was completely caught up. Her response, well she didn't have time for our daughter to get it all done. Our daughter completed the homework, even though it would not be calculated into her grades. During this time out daughter would go to school, get out at 3 and then work on last quarters makeup work until 9
pm. Of course I didn't think this was fair either. I called the principal and requested an extra set of books to be kept at the house, and asked that we get emailed the days work so she could be caught up when she returned. He thought this was a great idea, but the teacher called. She told me she wouldn't email the homework everyday, because she didn't have to get it around until our daughter missed 3 days per district policy. When she did email there were times it came at 9 am,
other times it came at 4 pm. If I didn't respond within 30 minutes of her email not matter what time it came, she sent another email chastising me. Further more, she refused to fax the worksheets, and left them in the office to be picked up. Now my husbands job is a travelling job, sometimes he is here and sometimes he is not for a few days. So on the days they missed due to the weather, I couldn't just go to school and pick it up, because if it's to dangerous for them to go to school, it was to dangerous for me to pick it up with them! So stacks of worksheets continued to come home, with no instruction on how to do them, and our daughter was overwhelmed, and lost. I spent my time googling to find out what the hell they were talking about and how to teach it. In the 504 it stated that our kids would be allowed access to a homebound teacher, who would come to the house and work with them during cold temps. All we had to do was call, when we did call they said the grades hadn't slipped far enough to warrant them sending the homebound teacher (our daughter went from an A average to a C) she was again devastated, and I thought it's not fair to make her fail, before helping. They never said that the grades had
to slide, just that we needed to call and they would send the homebound teacher.
They refused to let our kids ride the bus, which I didn't think is a problem because I stay at home with them. What I didn't anticipate were the days we would get a phone call from the school, saying the class had gone on a trip and our daughter
was in the office. We could either pick her up now and try to catch them, or leave her in the office. Of course I would run back into town, grab her and take her to whatever event they were attending. Yet again, I didn't think this was fair, the kids were segregated again, and it was apparent they were either extremely unorganized or our daughter and incorporating her never crossed their mind.
My frustrations were becoming apparent, but I was happy that obviously the meds were working because there were no reactions happening, and I thought we would be able to get the no school days lifted. However, while talking with our daughter one day, she told me she had been to the office about 6 times for reactions. I was floored, as part of the 504 they were supposed to be calling me for every reaction, not that I would take them home for every one, but I could pass to the Dr. how well the meds were working. She then proceeds to tell me they will not give her the Benadryl when she was
having a reaction, and she was petrified of her throat closing again. I thought she must be exaggerating, so I called the school and talked with the nurse to find out everything our daughter was saying was correct. She had about 6 reactions that we were not made aware of, and the nurse had decided that she would not give Benadryl because she didn't want her
tired. Instead she would put her under a blanket and wait for her throat to close before she did anything. Not only was this against a signed Dr.'s order, the action plan, and the complete wrong thing to do, our daughter told me it made her feel like a side show. This was wrong, completely dangerous, and unfair to our daughter.
If you have made it this far in the post, you may be thinking that I am acting like a two year old saying "this is unfair." However I did this on purpose, because I didn't want to call it what it was right off hand. I wanted you to see you may have obstacles that you feel you have no other option than to do what the school says. So now lets call it what it really is... Everything that I said was "unfair" is (drumroll please) ILLEAGAL! Yes, you read that correct. Everything they
did last year was completely 100% illegal. Kids with health conditions are protected like you can't believe. SO let's get you some info on how they are protected.
1. The 504 is not done out of the kindness of a schools heart. It is a federally mandated program, and if your school receives federal money they have to offer 504's. Furthermore, if there is something that is in the 504 that your child can't do (got to recess in certain temps) or the school doesn't want them to do (ride the busses) they MUST come up with a solution to include your kids and pay for the accommodations. If they don't, then they are in violation of a Federal Law. So when the school would park our kids in the office, they were in violation of Federal Law. When the school said the kids could not
ride the bus, but would not find another way to transport the kids (again, we were in a position to do it, but what about families where both parents work) this was another violation of Federal Law. Waiting for our daughter to fail
before sending the homebound teacher... you guessed it, is another violation. Under the 504 law, if the school for some
reason cannot make the accommodations, and you have to take your child somewhere else, they have to PAY for it. So if you take them to a private school (which is the only other school option for us, but we can't afford it) they have to PAY for the tuition for both kids. If you decide you are done with school and chose to homeschool or online school they have to PAY for the materials and tuition if you enrolled in an online school after the open enrollment date.. Basically if
they do not accommodate your child, they have to pay for someone else to do so.
2. Kids are protected under the Americans with Disabilities Act. Yet again everything I mention above was in violation of my children's civil rights under the Disabilities Act. Can anyone say hello ACLU? I am not saying jump to a lawsuit, but when you have exhausted all other options of trying to work it out yourselves, sometimes a letter from a lawyer can snap them
into compliance. IF not, then go for the lawsuit, it's your children and they deserve to be included and not segregated because of a health condition. My best advice is to know your rights and well as your children's. Last year I had
no idea that we had rights afforded to us, but I do now. Knowing our rights is going to help immensely this school year. The kids were fine at the thought of homeschooling up until a month ago, and they really wanted to go to school to be with their friends. With a new superintendent in the district, we had a meeting with her, and have been promised all of the things that happened last year will not happen this year. So we are trying it again, but I will be watching, and knowing what
I know now, I will not hesitate to call a lawyer. Again I don't want to jump to a lawyer, but realizing all the legal violations
last school year, I am not about to go another year trying to work it out with the new administration if needed. We have since switched Dr.'s and after a huge snafu last week with the new administration (trying to get our child's medical chart's which he refused, and then the nurse trying to talk us out of enrolling our children in school, which you guessed it,
is ANOTHER violation under the 504 and Disabilities Act) I am not holding my breathe. He knows that they refused to give the meds last year, against a signed Dr.'s order, and has said he will give them one chance under his direction. If they fail, then he will write a letter to the school district stating they he has advised us to pull them out, as they cannot keep them safe, and will file the appropriate complaints with the Attorney General of our state. And you guessed it, they will be
responsible for tuition or homeschooling supplies, whichever one we decide.
I really hope this helps if you are struggling with this battle. If you are in a battle like this please visit the parents page of the website for some invaluable resources to help you with your school. :)