So the next step was to increase her IH meds. Then the next step was to let her school know about the new problems. Then the next step and the next ... All of you parents of IH kids know that there is ALWAYS another step that has to be taken.
Since working with the school this past month is fresh on my mind, I thought that I'd share a few more education tips. As time goes by with chronic IH, your child will transition from one grade to another and eventually move on from grade school, to middle school, to high school and perhaps college. Even if the IH is in a somewhat regular pattern, you must stay in contact with the school. If they don't hear from you, they often assume that there is no problem or that there was a miraculous cure. Simple updates every quarter will keep your child's educational needs in their minds. You should update them with such things as:
- Medical information -- What's the latest news from the doctors? How do the eyes look? What are the less obvious symptoms that you see at home regularly? Make a list of what you see such as memory problems, anger, depression, concentration issues, fatigue, disorganization, etc. These are often invisible symptoms that should be pointed out.
- School attendance -- Acknowledge how much or, hopefully, how little school was missed this past quarter. Did your child have trouble keeping up with assignments? Why? If he/she was able to attend school throughout the quarter, was he/she physically there, but perhaps not mentally. They may have made it there, but didn't function very well. Or as I like to say, "the lights are on, but nobody's home."
- Ask for input from the school. Sometimes, a teacher or learning consultant has observed something and has an idea to pass along. This can be quite valuable! When my daughter was in Kindergarten, her teacher pointed out that she had recently started taking the steps one at a time and suggested that something neurological might be happening. The neurologist appreciated the information!