Getting the Ball Rolling

This picture was taken by Mimi yesterday during Luke's therapy. Look how well he is doing! I am so happy for him! He fussed the entire time, but he is strengthening his lower body.

So, my mother, Marty, and I are getting the ball rolling for Luke to be enrolled in school next year. We are going to observe in some local classrooms and set up meeting, so we can be as informed as possible when making choices.

It is really interesting. Enrolling a child with special needs in a school is a totally different beast than enrolling a typical child in school. We are already starting the process now, in February, so we can set up IEP (individual education plan) meetings in May, so he can attend school on the first day of school in the fall this year. This process is taking a lot of mental energy as well as taking a good amount of physical energy between emails, phone calls, observations, etc.

I have been on the other side before. I have attended IEP meetings as a teacher. Now, I am having to go through this process as a parent. I must admit that it is difficult. My child, whom I have protected for the past three years, is now going to be exposed to life outside of my protective shadow. It is scary for me. I know it is not scary for him, but I just don't want anything negative to happen to him. Many people have opinions of Luke that are totally wrong. They look at him and think that he has no cognition (thought, ability to think and reason). They don't see what I see. They also don't expect of him what I expect of him. So, it scares me.

Going through this process also forces me to forgive some people who have hurt me deeply in my professional experience. Will they treat Luke as they had treated me? I pray not, but I am unsure. My plan is to advocate for Luke, while also keeping in mind what the school system is capable of. I will not be the type of parent that every teacher dreads, but I will be the kind of parent that keeps people accountable for their actions.

This is just kind of difficult... and the difficulties are starting to effect me in weird ways.

Yet Another Hospital Visit

We had the opportunity to visit the hospital with Luke for three days again this year. Every year, since his birth, we have made a trip to the hospital. Once for apnea issues, once for testing, and the third time for lethargy (not at all normal for Luke).

On Saturday January 23rd, we went to the local ER. He was really lethargic, he wasn't eating.... he was just acting like a blob. The docs had no idea, so some testing was done. First, blood work (for RSV), a urine sample, and starting fluids. Next a chest x-ray. Then, a cat-scan. Last, and biggest of all, a spinal tap (checking for meningitis). I freaked out at this point. All tests were negative, so we were sent to Sacred Heart so Luke could be "observed". We stayed for three days and were sent home with only one answer. His adnoids are too large so they will be referring him to an ENT. We actually have more questions now than we did before going to the hospital. It was so emotionally draining.