When she was as young as 6 months old she was struggling. She started early interventions in the home for global delays. By time she was three years old she was said to have failure to thrive along with her pervasive global delays.
At the age of three she started school because she was not talking. We looked for answers but were told that nothing was wrong. She was hospitalized several times because of her weakened immune system. Something that would seem mild to another child would become a major issue for her. Who would think that pink eye would land you in the hospital on an antibiotic IV for a week!
Before Sarah started kindergarten she had to have a physical. When we took her in the doctor she was supposed to see was not there and a neurologist was covering for him (military medicine, you don't see the same doctor every time you come in). That neurologist took one look at her after hearing of our concerns and promptly said that she had neurofibromatosis. Wow, we finally had answers. After all those years of doctors telling us that nothing was wrong when we felt that something was wrong, we finally knew what we were dealing with. Neurofibromatosis can cause a host of problems which include learning delays and tumors to grow on the nerves.
School interventions helped with speech and by 1st grade she no longer qualified for speech services. At that moment she was not behind so they wanted to take away her IEP and services. We felt that if they took away her supports then she would quickly fall behind so we qualified her for services under POHI (Physically or Other Health Impaired).
At she got older it was harder for her to keep up and by third grade she was in a self-contained classroom. After spending a year there we felt that she would be better served in a regular class with help from the resource class so we signed her out. The school was not used to parents opting out of the self-contained class once their kids were there but they couldn't fight us on it.
Along with the learning delays Sarah also had medical issues to contend with. When a MRI showed a problem with her optic nerve she was diagnosed with an optic glioma. This was found when her eye prescription changed very quickly. Annually she had to have MRI's and over the years the optic nerve never changed. After one MRI she turned pink all over and it was determined that she was now allergic to the contrast. After years of watching her get papoosed for the contrast IV as a young child up until her allergic reaction we decided to stop the annual MRI's. We are now keeping an eye on her optic glioma thorough her annual eye exams. If she has another quick change then we will do another MRI. She has other tumors, but none that can cause serious problems. The optic glioma can cause blindness in the affected eye if it can not be controlled.
Sarah did did not have problems with teasing in elementary school. However, once she hit middle school the teasing started. The kids had no idea what Sarah was dealing with and they really didn't care. Sarah is short and younger looking because of her NF1 so it makes her a target. By high school the bullying got so bad that we had to pull her out of school and allow her to finish school from home. She did an online high school program and did great. I did not have to monitor her, I simply was her support. She was self-motivated to complete high school.
Sarah persevered and succeeded. The resources offered by schools do help the students. Sarah learned how to use the resources offered to her advantage.
She will go on a mission trip with Teen Missions International this summer and is looking at college options. Her future is full of potential.
To celebrate we took the family to a Japenese restaurant called Sumo.
Larissa enjoyed the food and experience.
Jason made it in from Charleston.
Sarah was gifted with an IPad. She was pleased with her gift and dinner surprise. We only go to Sumo's on rare occasions.