...my weekly reflection for my internship. Our professor asked us to turn in a reflection each week about our experience in Early Childhood Intervention. As a quick explanation, ECI serves families with children age 0 through who have a disability or developmental delay. We provide services of all sorts, and I've been observing (and partly participating) in lots of home visits, stepping into the lives of absolute strangers. It's been a wild 3 weeks, and I can't believe that's all it's been so far.
Here's this week's reflection, just because I thought I'd share it:
Reflection #3
Week of February 5-9
This week I didn’t go on any house visits. I told Becky last week that I thought I should spend some time in the office on Tuesday and then realized later that a conference would steal her (and most others at IPP) away on Wednesday, Thursday and Friday. Oh well! It was just me, medical records, many handouts, and a few books. I did a lot of reading this week.
On the one hand, it was nice to have time to catch up on my reading. I was able to read through the (very big) files of a couple of the children I had already visited. After our conversation last week in our seminar about the lack of proof about the success of ECI, I understand more about WHY it is so difficult to prove the positive effects of ECI services. Each file began with an IFSP stating goals, some of which were objective and others which were not. After the IFSP goals were dozens of progress reports that sometimes directly mentioned the goals and sometimes did not. This is where it became easy to see that graphing any changes in the child’s progress could be difficult. I had a hard time seeing consistency between each progress report. I know it can be incredibly easy for people who don’t work in ECI to be critical of ECI reporting, but since I’ve been on many home visits, I understand why it’s so difficult. As an EIS, SLP, OT or PT (Don’t you love all the acronyms?), you walk into a family’s home anywhere from 1 to 4 times each month. Maybe more, but that’s probably the exception. Still, you are only given the privilege of observing the child and interacting with mom or dad for an hour or so every few weeks. In such a short time, a lot needs to be accomplished. It might be difficult to have the opportunity to observe if the child completes a task 4 out of 5 times, as per the goal in the IFSP. If you can’t observe the task, then you must rely on the caregiver to report on the child’s behavior. Can you imagine asking a mother who has other children, a house and/or job to run, laundry, meals, errands, bills, and on and on…to count the number of times her child successfully completes a task? Even more, for some of these parents, this may fall very low on their list of priorities. So, between sketchy parental reporting and short observation sessions, chances of gathering sufficient data on each visit are slim. I’m not sure what sort of revisions the ECI community has in mind to provide for more supple proof of ECI success, but I’m curious about what is in store.
The second idea on my mind as I was reading through pages of material, largely about Sensory Processing Disorder (two children that I’m following have some form of this) was that…I’m scared to have children. Oh my goodness, the variety of strange conditions that could afflict young children seems so extensive!! See, I have two jobs right now that occupy my time. One is working at Infant Parent, interacting with families who may be struggling to raise their child who has a disability or delay. My other job is spent at the Children’s Hospital of Austin, interacting with children and families who are afflicted by illness, disease and disability. While I am fully aware that I am observing only a specific population, and there are many more children who are living an “average” life…it still irks me to consider the problems that my own children will face. The more I read or observe, the more I learn about conditions I have never heard of. I am especially intrigued by Sensory Processing Disorders. It almost seems made up to me. I’ve taken courses in cognitive science, so I’ve learned about how the brain processes images and thoughts, and I think what scares me the most is that, in cases of SPD, the brain appears to be hurting itself. I wonder what kind of lives these children (that I’ve visited) will lead. One boy can’t manage to focus on a simple task for more than 1 minute and uses almost no verbal communication. Another boy also uses no verbal communication but seems to function at a slower pace. Neither shows much evidence of affection to his caregiver. Will these children ever be self-sufficient and active parts of their community? All because their brains can’t compute the input given to them in their environment. Becky mentioned that there are many different forms of SPD and that we all have some sort of affliction similar to these boys. I think that claustrophobia must be a form of Sensory Processing Disorder. Consider fear of heights or any other phobia really. Images and experiences are fed to our brain and our neurons are unable to interpret the cues in a safe manner. It makes sense, but for people with phobias, they are usually only affected in isolated incidents. For these boys, it’s a daily experience to struggle to digest what the world is feeding them.
As a side note, what worries me even more was that both families of these boys had homes that were extremely “busy”. One child had hundreds of books, toys, games, tables, activities strewn about the house. The other had a playroom that was full of colorful objects, images and ideas. That begged the question of me: “How much does environment overrule genetics in cases of SPD?”
Ultimately, I still come back to the question of WHY things happen to children that presents the conditions I am seeing? I’ve always been the person concerned with the question, “WHY?” Ask my parents…most 3-5 year olds grow out of this question at some point. I’m the 23 year old who still says, “Why, Dad? Why does my car need that type of oil?” or “Why, Mom? Why can’t I just cook the chicken and sauce separately?” - Okay, as a blogger's edit, I don't think I ever really asked my mom about cooking, but I just needed a usable example :) - I think that was my motivation to go to medical school. I want to understand the why behind what people are. But I know that it’s more than biological makeup that creates us, and when I am given the privilege to walk into a family’s home and help them love their child, it opens the door wide open to the question of why their child is who he is. Past the doctor’s diagnosis, I see the family’s influence. I see that not everything can be diagnosed with a name, but that the tiniest act can have the greatest effect and vice versa. And those are the hardest to understand.
I wonder if this will be a question that plagues me forever. I feel a bit like Descartes, trying to strip away everything I ever assumed to get to that which I can really trust. I look at my hand and question if it’s really there. I see these children with their “disorders” and wonder at the truth that is at their core. I am definitely a skeptic at the moment. But I am an active skeptic, willing to assist those in need in whatever way I am able. And I guess that is the best I can offer.
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