Photo credit to Labbhealthoffice.com
What exactly does that mean? Protecting your chronically ill child from your school district? If you have a healthy child, you may be a little confused by this and ask why a chronically ill child needs protection from a school or school district. Please continue reading because even if you have a healthy child you may know someone who has a chronically ill child and this information could help them.
My youngest son, who was a healthy child when he was younger has now changed to a chronically ill child. In 2013, he was diagnosed with Ehlers Danloss Syndrome. Many of you will be saying “I have never heard of that!” Well, your not alone, I hadn’t heard of it till my son was diagnosed. It is a connective tissue disorder but can affect your vital organs, wreck havoc on your joints, muscles, stomach, and many other parts of your body. You look perfectly health at times and other times you lose all of your skin color and at times you can look like your skin has a yellow tint to it or other colors as well. There are many problems that EDS can cause in a person’s system, that they have no control over. People do not believe that it is a condition and often state that it’s all in the person’s mind and there is nothing wrong with them. That they look the same as they always have. Making it very hard for the person with EDS to have someone to talk to about everything they are going through.
There are many chronic illnesses, EDS, Potts, fibromyalgia, are just a few of these chronic illnesses. You can’t actually “see” them but they are VERY real. Children as well as adults can be affected by these chronic illnesses. They can affect their lives in a multitude of ways, most of which can not be seen by the naked eye. So it proves to be difficult for schools, family, and friends to understand what they are going through. To understand the difficulty of the health problem, why the person can not get out of bed, why they are throwing up, why they can not function on a daily basis.
In November,2015, my son started with chronic stomach pains and throwing up all the time. No reason for it, no cause that we knew of at the time, nothing would stop it from continuing. They had no idea what to give him to stop it. They tried Zofran, which made him throw up more and gave him more intense pain. If you have taken Zofran, you know it’s used to stop all of those things from happening. We tried G.I. Cocktails which relieved enough pain to make it tolerable. He had every test on him from radio active stomach tests to ultra sounds of everything under the sun. There were no answers. We continued to get so frustrated, with no answers in sight. We continued to monitor him and his Dr.’s visits were almost always a 6 month wait between each visit no matter what he had going on with him. It gradually got to where we are now, my son throws up daily, it can be up to but not limited to 10 times a day with some extreme stomach pain that would have him curled up in a ball and crying.
My son started to miss school due to his health condition. They were fully aware of his medical issues. In the 2016-2017 school year the Dr.’s sent a letter to the school stating he would be missing school and they were to be excused for the missed days. That they are working on how to treat my son’s EDS and chronic stomach issues. He was missing several days, I was getting called to the school daily for his health, it was really a never ending cycle. It also would have just been easier for me to stay at his school all day because I was getting called there all the time any ways. I was always there within 10-15 minutes of the call, as I was always dressed with shoes and all on everyday there was school. So, it was nothing new to the school, it wasn’t like it had just started there, it had just hit a peak of out of control.
The school sent me a letter saying we needed to discuss his habitual truancies from school. So I went in for the meeting and they had the principal, school councilor, truancy officers there for the meeting. For the millionth time we went over his health problems, why he is missing school and so on. The truancy officer stated that if he continued to miss school I would receive a ticket for truancy. I told them I was fine with that, that I would fight it and get it thrown out. So the truancy officers thought about what I said and decided that I would get it thrown out. Now, I should add in here, that I am a huge advocate for my son and I won’t allow them to try to push me or my son around. So as we were talking they brought up taking me and my son to court for the truancy. They were trying to scare me and it wasn’t working. I told them that they should do whatever they think that they needed to do. However, they also needed to understand that I would not be sitting by while they were doing it. That I would fight them and I would win. When I left that meeting, I had made a choice for my son before I stood up from the table at the meeting, to go to the door, to leave the school.
I went home, got on my laptop, and found my son his new online school that he would be enrolled in. I chose to enroll him into K12 after looking at all the options that were available. I put in for his enrollment before I even had to pick him up from school. I sent in all the needed information and we had a two week wait for them to enroll him in their late enrollment. We were confirmed and I stated to the school that he would be being removed from their school district very shortly. During our waiting I received court papers for my son for his truancy court. Which really had me mad, but not worried. I went and hired an attorney, got my son and attorney as well. Now, for the record these court papers were not about my son’s health. The reality of it is they were trying to come after me because they couldn’t intimidate me and get what they wanted. I told them where to go and how fast to get there, I had no problem doing it either.
I was not worried about the court trial at all, even though they were threatening to remove my son from our home. I knew I had everything that I needed and I was prepared for the battle. Meanwhile, my son started school with K12 and was doing amazing! He had class everyday and he was excelling more then he ever did in the school he was attending. No, I am not just saying that because I was upset with the school. It was a reality! His school teachers had him reading at a 2nd grade level in the brick and mortar school, he was reading at his grade level and higher with K12. K12 was way more of an intense curriculum and he was getting amazing grades! The school was holding him back all that time, I wish I had gone to K12 sooner in all honesty.
After I hired our attorney’s to represent my son’s father and I and one to represent my son. I went to work, I knew I had all my ducks in a row because I always keep everything that has to do with my son’s care. Not for this reason because I didn’t honestly think that I would need it for a court hearing. I do it for me, so I can go back if I need information for a new Dr. (Which he has 10-12 at the moment), so I could look back to try to figure out how to help with his stomach and EDS health issues. I also had his my chart account to pull his tests that he has had ran, his Dr.’s appointments, and everything and anything that I needed for his medical. They wanted a fight they were going to get one. But, I knew it wasn’t going to go anywhere. I want you to be as confident and ready to fight if you need to for your child. In all honesty, I hope that you won’t need this information but the reality of it is, you just may need it and you will need to be prepared. Some school districts do not want to work with the parents or their chronically ill child. Other schools are just amazing with working with parents and their chronically ill child. To those schools that are great with working with the parents and chronically ill children, thank you and you will never know what it means to these families to have your support!
Now, if you find yourself and your child in our shoes and either getting a truancy ticket or having to appear in court for truancy. I am going to tell you what you should provide your attorney’s with and how to get it. I found that having a fax machine got it to me and to my attorney in record time to keep us prepared. If you have not started to save these things, please do start in case you need them at some point it will take you less time to be prepared.
* My Chart ~ Has all your child’s medical information that you can print at home. From when your child had Dr.’s visits, when they were diagnosed, growth charts, health summary and so much more. There is a lot of different information there that you will need. So make sure your signed up for my chart.
* Emergency Room visits or hospital stays~ Your local hospital can print them out for you easily and have them in an envelope for you in no time.
* Phone records ~ If your getting phone calls from the school daily for your child, your phone company can get you the phone records for incoming calls and out going calls send it to you or fax it.
* Emails with school ~ Hold onto every email that you received from the school teacher’s, principal and anyone else that is with the school. Be sure you are not ignoring the emails and respond to them.
* If you changed their school~ New attendance record, how child is doing in school, grades on any tests that they have taken on them since they arrived, letter from teacher about how they are doing in their classroom.
* Disciplinary actions~ If your child has any disciplinary actions such as a referral, suspension, or any other types of discipline the attorney will need them.
* Notes home from school~ Anything that is sent home from the principal or teachers about attendance, their health, or anything in general about how they are doing in school keep.
* Letter from teacher~ A couple of months into school ask your child’s teacher to write a letter for you stating how your child is doing in their classroom, in their own words, you will want one from each teacher they have and every year. If your having to go to court for truancy the school attorney will not allow them to write them for the court trial. So better to be prepared ahead of time. Just tell the teachers it’s for you to have on file at home and you may decide to give them to your child at a later date. Which you may want to do.
All of these things listed above will be what you will need for your truancy court. Now, because I had these items above my son’s court case was dismissed. Yes, we still had to go to court but just for them to officially dismiss the case, which took us about 30 minutes. I honestly hope that you will never need all of this information but I would rather you were prepared then not. So get files and start to compile some of the information so that it won’t take you any time at all to be prepared.