First of all, I am so very thankful that I have good friends who told me of your advocacy group, as I am beside myself with worry greatly beyond having to deal with my daughter's illness now.
I have, for approximately 3 years, been trying to figure out what has been wrong with my daughter, Kristyna, who is a 14-year-old 8th grader. She had been complaining of gastrointestinal issues and I have had her to many doctors, who have completed many tests and surgeries in attempt to diagnose. I was hopeful that after she had her gallbladder removed that we had solved her problem; however, quite the contrary.
To make a long story short....Kristyna was finally placed in the care of the gastrointestinal doctors at Colorado Children's Hospital and I feel that we might be on our way to getting her on the right track after diagnosis of Crohn's Disease and chronic salmonella and pending-to-be-tested for gastroparesis soon.
In the midst of dealing with her illnesses, I have been fighting with the school district concerning her education. I, as a teacher, take her education SERIOUSLY! Also, as a teacher in the same district, I apparently continued for much too long having some trust in the idea that if I JUST talked to them enough and provided them with every bit of doctors' information, that they would take her situation seriously (NOT A LITTLE TUMMY ACHE!) and help me with her education during this trying time.
I requested her work from her school and had MANY personal conversations and correspondence with her principal, vice-principal, truancy officer, and Central Office. I knew that I was not getting all of the work that was needed to provide her with an education and to pass her classes. I requested (as well as her doctors) that she be placed on a 504 Plan. We met and a plan was drawn up. At that time, I believed that Kristyna might be able to start attending SOME half days with the medications seemingly proving to have some affect. Then......she contracted Salmonella! With Crohn's, any stressers (health or emotional) can throw this person into a flare-up. Kristyna's body was not able to rid of the Salmonella, as a person with a healthy digestive system would. Her doctors were stumped as to how to rid her body of this with her already-compromised health condition.
Needless to say, this has been a long, drawn-out, horrible process. I had asked personally and in email that her 504 Plan include a homebound tutor just in case we were to have some sort of backslide during our first meeting to develop the plan. I was met with "we will cross that road, if we get there." I told them that since this is all new to us and every Crohn's patient is different, that I felt it an absolute necessity to have this in the plan. I was refused this. Augh, we got to that road.......and my daughter was denied verbally and in writing for a homebound tutor. I became impatient after a half of a year of trying and withdrew her from school and placed her in a homebound tutoring program. I have also shipped her off to live with my parents in Wyoming, as her health has declined and my parents are getting her in a rhythm of homeschooling. I unenrolled her from the district on February 3 and NOW have a summons signed on February 18 as to my having to show up to court for truancies. Her doctor at Colorado Children's Hospital agreed with me that homeschooling would be the best decision for her until she is placed on a treatment program that will help her. I went in to talk to the District Deputy County Attorney in Lincoln County, Jennifer Wellan, on Friday and was treated as though I wasn't taking this seriously even though I CALLED WITH NO RETURN CALL AND THEN WAS SITTING IN HER OFFICE.....of course, I know it's serious! She also told me that I could hire a lawyer, if I could afford it (I am a single mother working on a Nebraska teacher's salary, paying for medical and pharmaceutical treatments, and traveling to doctor's appointments) because it might be decided that my daughter could be taken away from me and placed in a foster home. I AM BESIDE MYSELF!!!!!
Kristyna is currently with my parents in Wyoming and I am going to be signing over Power of Attorney for health and education. Will this help my situation? Please help!!! My daughter has lived with me her entire life, is a great student, participates in volleyball and basketball (even played through pain in her tournament prior to her gallbladder surgery against my judgement), and is a talented and beautiful singer. She WANTS to be back with her friends and activities at school.....her health isn't allowing! I CANNOT BELIEVE that a school system has been that unwilling to help a child with a tutor and for laws that are to help children are hurting these kids who are suffering health issues!!!!!!!
I am an educated individual and this entire situation doesn't even allow me the ability to "write" cohesively when telling of this story right now. I pray that you can help guide me in a direction that will "stave off the wolves" and allow me to continue to care for my child.
Sincerely,
Denise Shoults
North Platte Teacher and Pained Parent