week one of CE

Well, tomorrow starts week #2 of CE so I need to get some thoughts down about week one! As I observed the activity of the first week, I had a lot of thoughts about how they were doing things such as, "Erica actually does quite well walking without holding onto anything, as long as I'm behind her with a gait belt. I wonder if I should mention that to them?" But I kept quiet because I wanted to see how she responded to their methodology, and also because I'm waiting for Kelly (the director) to get home from vacation because I'm not too confident about talking with the Hungarian conductors. At the end of the week, she walked out of the room and into the hall - at a rather brisk pace, I might add - with the conductors supporting her at each elbow but not holding on to anything. Hmmm - there must be something to that ladder thing.

I will say this about Brighter Beginnings: they have taken the space they were able to find and are doing the best with it! I know that Kelly mentioned they hope eventually to build their own clinic - which of course would be ideal - but in the meantime, my only real complaint about this facility is that the front door is not ADA compliant. It is super heavy (therefore my usual helper, Natalie, cannot manage it), has no stopper of any kind, and is just a real b**** to deal with! Other than that, there is loads of parking in the lot because the other businesses in the building aren't super busy; BB has taken it upon themselves to spruce up the ladies' room, which has a nice changing table in it; their clinic is bright, roomy, and cheerful and the kids seem to really enjoy being in there; and the waiting room - although somewhat small - is nicely decorated. Natalie and I walked around the building on the first day to explore, and found that an elementary school directly behind the property has a really nice playground and a picnic table under a large shade tree. We took advantage of this on Tuesday, before the weather spiked too hot and muggy once again. Oh, and the location is just a hop off the highway (33) for those of us who are driving a long way to get there!

Here are some random observations I made this week:
- They are obviously doing a lot more crafts and learning activities than I realized, because I see a bulletin board in the classroom where they are putting leaves on a tree for something and displaying artwork... I need to ask what that's all about and take a closer look. (On Friday Erica was excited to share that D. won a prize for having the most leaves.)
- During lunch, they each sit around a table on wooden chairs with high ladder backs. They have grab bars in front of them on the table, and I noticed they were encouraging Erica to hold this bar with her left (weak) hand while eating or manipulating craft materials with her right. She has a block under her feet for 90/90 positioning. To my surprise, they had no belt, towel, pillow or other support of any kind helping her to sit up and yet she was... without ever seeming even to start to fall over. How does this work?
- The written report on Friday stated that Erica worked very hard the first week, is becoming more active each day (? - not sure I see it, but OK...), sits and eats nicely at lunch (this I could see) with verbal prompts to keep head at midline, and is being encouraged to answer with complete sentences not just single-word answers. This last bit made the SLP cheer when I reported it on Friday... it's actually one of her IEP goals and these ladies didn't take long at all to realize that she is capable of sentences and to require it of her. Bravo!

This coming week, Natalie will be at day camp so I will have time alone in the waiting room - maybe I can surf the Internet to do some in-depth reading on CE methodology and find answers to my questions about why they do things a certain way. Or maybe I'll just pester Kelly since she'll be back from vacation, LOL! Probably a little of both. I know I plan to clean out my inbox (over 300 unread e-mails at last count - not from actual people, mind you... those get opened first... these are links to articles, newsletters from ARC or the BODD, and the like).

Hopefully, I'll be better about posting news more frequently, and we'll see where all this leads!

The latest adventure

Well, today was day three of Erica's latest adventure - Conductive Education, or CE. You can Google CE for any number of informative sites, so I won't go into detail about the principles of the program here. Suffice it to say that it is an overall philosophy of how to educate a person with a neurological impairment, such as CP, and the result is a program that resembles an OT/PT/speech and life skills training class all rolled into one. I've wanted to give it a try for Erica for some time, but not until a clinic opened in nearby Marysville did I get the motivation to follow through. Brighter Beginnings was started, as are most CE clinics, by a parent who wanted the program available to her child and turned that desire into a business opportunity, helping out other parents in the area who also wanted something closer to home.

So we are driving to Marysville every day for four weeks. Kinda rough in the gas usage department, but so far OK in all other aspects. The class meets from 9:30-12:30 each day, so we avoid the morning rush hour. Natalie takes along several kindergarten readiness workbooks, coloring books and magazines. We are spending about an hour each day on school-related stuff, which is WAY more than I would make time for during summer break if we were at home, so that is a big plus for the little sis. I have a few friends in Marysville whom I never get to visit (we always meet in the middle when we do brunch), so that is nice as well.

Parents are not typically encouraged to observe CE classes, but at this clinic they keep the curtain open on the two-way mirror/window for a few days so we can get a feel for what they are doing in there. I know that, similar to the intensive PT programs we've attended, there will be a home program given at the end for follow-up and continued progress after the class ends. I'm assuming that means we'll be allowed to observe again at some point, otherwise how do we really know what we are supposed to be doing?

Another interesting aspect of this experience is that the conductors (they are highly trained at the Peto Institute in Hungary, but they are not therapists), being Hungarian, have strong accents and their command of the English language is good but not easily fluent. Communicating with them is sometimes frustrating. We were encouraged to bring a notebook in which they would document what the class is doing and progress being made, but as of day 3 there is only one entry and it mainly praises Erica for being well-behaved and a model student. Cool! But that doesn't tell me what she's doing. I don't get much from her, either. Yes, it's a blessing that Erica can communicate verbally to an extent. But when questioned about details of her day she usually says "I dunno." Come to think of it, maybe that's typical behavior for a 9-year-old ;)

My observations thus far have been that they are doing some interesting activities: circle-time type greetings at first, then some floor time for stretching and range-of-motion work; a walking program and time to work on individual goals - rolling, crawling, pushing up to sit... wherever they are at. They eat lunch together at a table, and this provides the opportunity to work on self-feeding skills, use of utensils, social skills and washing up. I have heard them sing songs together and seen them talking about some topic (plants, according to the written report on the first day... but what aspect of plants I know not).

In general, my first impression is that Erica is not as challenged by this program as she is by intensive therapy programs, where she gets one-on-one attention and focuses intensely on a small number of targeted goals. Here, she is one of three or four students, and when she completes a task she often sits and waits for the others to complete the same task, creating "down time" that doesn't exist in intensive therapies. She also is slightly older and a bit further along in developmental stages, so I wonder if she were in a class with other kids of her same abilities if it would be more challenging for her. It's not really fair to compare CE to intensive PT, it's kind of like apples and oranges. But since that is our prior experience, it's natural for me to weigh the costs and benefits of each against each other when assessing the effectiveness of the program.

The jury is definitely still out! We are just getting started, and I haven't had a chance to talk with anyone about specific goals for Erica - it's all new territory so I'm laying back for a bit and just observing. Stay tuned for more impressions in days to come...