In my seven years of speech pathology and more than 400 IEP meetings today was the hardest IEP meeting I have been a part of. Right now I work at two schools for an elementary district in Northern Los Angels. One school I'm at I work in two SDC (Special Day Class) programs for children with multiple severe disabilities.
This morning our team had an IEP meeting for a little boy in one of the SDC classes. This particular boy is one of the sweetest students I've ever met. You wouldn't know it by looking at him now but last year this time he was in a typically kindergarten class, walking, talking, making friends like all the other kindergarten students at our school. It was about this time a year ago things started changing for this boy physically and mentally. Within the past 12 months this little boy has changed from a typical K-1 student, talking, playing at recess, making friends, eating and misbehaving like typical kindergarten students do to barely being able to walk, eat and talk. He is nearly nonverbal today.
About a month ago his parents took him to a pediatric neurologist but a formal diagnosis was not given because of extenuating circumstances. For other strange and unusual circumstances his medical diagnosis was actually given this morning at our IEP meeting. These parents were told this morning that their son has a rare aggressive degenerative disease that will eventually lead to death. I had a very difficult time staying composed during our meeting. My heart ached for this couple and their sweet boy who sat next to mom at the meeting rolling his toy bus on the table.
My mind reeled as the meeting went on thinking of all the cases I have worked with over my career. The closest thing I can compare this to was back in college when I had an internship at a long-term care facility on a dementia floor. I worked with two women in particular that left an impression on me. One was in her early 50s and one was in her mid 80s. I wondered then as an eager therapist, "What goals do you set for someone who has a progressive degenerative disease?" With adults fighting dementia and Alzheimer's speech-language goals focus on maintaining memories for as long as possible and creating strategies to maintain those memories. I remember vividly the husbands of these wives coming to visit every day not knowing if their wives would recognize them that day and the joy and tears on the days they did remember their husbands.
Today I set a goal for a little boy who 12 months ago could walk, talk and hang out with friends. Now he can barely babble words. This little boy finds joy in babbling when he has the strength and can use other augmentative devices to communicate wants and needs. When I have my language group in his classroom and we sing songs he lights up like a firefly and gets a huge grin on his face showing his enjoyment and love of music.
Today my perspective changed, or maybe just put back in place. Life isn't always about making a lot of progress, being the best, getting the best grades, having the best kids, being the perfect parent etc. Life is more about making the most of the time we're given. I couldn't help but think during my IEP meeting this morning what this little boy's parents wouldn't given to have 10 more years with their son. His doctors don't know if they will even have 2 more years at this point. Today I was reminded that life is precious.