So as I was sitting in the waiting room on Thursday, I heard the door to the classroom open and Erica's giggle coming from the hallway. It was 20 min. before the end of class, so I wondered what the deal was. She walked right past and down the hall to the bathroom :) Very cool.
Today she was very excited to be the student who won the prize of the week for the most leaves on her branch of the tree. She was awarded a blue balloon.
Friday, August 5, 2011
Wednesday, August 3, 2011
puppet show :)
When Kelly arrived this week I asked and received answers to all my questions about various things in the classroom. She also let me look at Erica's file, which contains her application to the program, the initial evaluation by the conductors (extremely detailed and perceptive, I must say), and the goals written for this class session along with a lesson plan detailing tasks she will be assigned to achieve progress toward those goals. It is a little different than what we've done in the past, but I am impressed with the attention to detail in the file and noted that all the goals I mentioned in the application were included.
I have to admit that as the days go by, Erica's walking looks better and better. At the start of week one, two conductors were supporting her at upper and lower arms AND using their feet to anchor hers to prevent the "two foot hop," as we like to call it.Yesterday she exited the classroom with only one conductor giving her support and only at the lower arms. She also walked out the door, past her waiting chair and into the lobby just to show off. :) I am impressed. PTs have gotten this level of achievement out of her before, but not consistently and only after working with her for longer. So, once again, we'll see where this leads.
I was under the impression that toilet training would be a big focus, and I was interested to see if that would lead to any progress. But they haven't tried it that I can tell. I'm not surprised - they do so many things already that it would seriously slow them down in other areas. This, of course, is why we don't spend our days at home focusing on it. She might be further along if I ever got it in my head to have a toileting boot camp at home, to the exclusion of all else. But other things always seem to get top priority. She does well at school, where it is worked into her daily routine.
Today Erica didn't want to come to CE, and had quite a meltdown at the door going in. But after a bit she was fine, and now I hear giggles of delight from her in the room as the conductors are using puppets today to work on various concepts and to praise the students when they work extra hard or complete a task. One student, I'm told, is not a fan of puppets but is taking his cues from the girls and therefore OK with it. They are really doing it up, with funny voices and making fun of the conductors which the kids are really loving, of course!
I have to admit that as the days go by, Erica's walking looks better and better. At the start of week one, two conductors were supporting her at upper and lower arms AND using their feet to anchor hers to prevent the "two foot hop," as we like to call it.Yesterday she exited the classroom with only one conductor giving her support and only at the lower arms. She also walked out the door, past her waiting chair and into the lobby just to show off. :) I am impressed. PTs have gotten this level of achievement out of her before, but not consistently and only after working with her for longer. So, once again, we'll see where this leads.
I was under the impression that toilet training would be a big focus, and I was interested to see if that would lead to any progress. But they haven't tried it that I can tell. I'm not surprised - they do so many things already that it would seriously slow them down in other areas. This, of course, is why we don't spend our days at home focusing on it. She might be further along if I ever got it in my head to have a toileting boot camp at home, to the exclusion of all else. But other things always seem to get top priority. She does well at school, where it is worked into her daily routine.
Today Erica didn't want to come to CE, and had quite a meltdown at the door going in. But after a bit she was fine, and now I hear giggles of delight from her in the room as the conductors are using puppets today to work on various concepts and to praise the students when they work extra hard or complete a task. One student, I'm told, is not a fan of puppets but is taking his cues from the girls and therefore OK with it. They are really doing it up, with funny voices and making fun of the conductors which the kids are really loving, of course!
Sunday, July 31, 2011
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!
Wednesday, July 27, 2011
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...
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...
Monday, May 16, 2011
My Heart Touched by a Bear Named Rainbow
Erica went to Build-a-Bear with her Brownie troop. They chose it as a special activity using hard-earned cookie money, and made a few extra bears to donate to Children's Hospital. She came home with a tie-dyed peace bear which she named Rainbow (aunt @[1090760922:Kimberly] will be jealous!). When I realized it had a sound chip in it I rolled my eyes. But I take back all my negative thoughts of a song-clip ad nauseum because this morning when I went to get her up for school she was holding the bear in bed and played it... "I see your true colors shining through... I see your true colors, and that's why I love you, so don't be afraid to let them show... your true colors... are beautiful like a rainbow."
I thought, "wow, what an appropriate song clip for a rainbow bear - and how lovely for my special daughter to have chosen it when it has a message that is especially important for her to remember." And then Erica said, "I wuv you too wainbow."
Wednesday, May 4, 2011
Driver's test - check!
At long last, Erica has passed her driver's test. No, of course she is not 16. I mean the one where she goes to Children's Hospital and proves to doctors that she can maneuver a power wheelchair through doorways and down halls without mowing down people along the way. In gleefully posting this on Facebook, one of my fellow special needs moms commented that she hates that Erica had to "prove herself" to get what she needs, but loves that she is moving forward (literally - LOL!).
I understand why they have seating clinic and the driver's test, as we have come to refer to the process. But I continue to contend that they should have some sort of driver's training class for kids who need powered mobility, just like the schools offer driver's ed. for teenagers and automobiles. They say "well you can make an appointment and borrow a chair from the vendor to practice on for a month or two." But no one ever explains to parents how to teach their kid to drive one - and certainly no one offers to teach her for you! Erica has been practicing on and off for about six years!! The latest training period has been since November, when I started sending her to school in a chair that we simply lucked into that another kid had outgrown and was collecting dust in a garage. It's old, it has lots of quirks, it was rigged piecemeal in many ways by the previous owner, but it served its purpose.
And now, the paperwork has been filled out and the long process started to get Erica her very own, custom-built, made-to-order power wheelchair. The model that we agreed upon with the vendor can actually go up and down curbs and should have adjustable height. I can't wait to see her go to town in it - or, to the playground as the case may be. ;)
I understand why they have seating clinic and the driver's test, as we have come to refer to the process. But I continue to contend that they should have some sort of driver's training class for kids who need powered mobility, just like the schools offer driver's ed. for teenagers and automobiles. They say "well you can make an appointment and borrow a chair from the vendor to practice on for a month or two." But no one ever explains to parents how to teach their kid to drive one - and certainly no one offers to teach her for you! Erica has been practicing on and off for about six years!! The latest training period has been since November, when I started sending her to school in a chair that we simply lucked into that another kid had outgrown and was collecting dust in a garage. It's old, it has lots of quirks, it was rigged piecemeal in many ways by the previous owner, but it served its purpose.
And now, the paperwork has been filled out and the long process started to get Erica her very own, custom-built, made-to-order power wheelchair. The model that we agreed upon with the vendor can actually go up and down curbs and should have adjustable height. I can't wait to see her go to town in it - or, to the playground as the case may be. ;)
Wednesday, March 9, 2011
I can make it work
First, a passing mention as to - OMG has it been that long since I had something to say on here?! But I won't attempt to identify the cause - it doesn't matter.
Today I had a bit of an epiphany, and it has lifted my spirits in the midst of the latest seemingly unending onslaught of precipitation in central Ohio.
Erica is in second grade, and it has taken me three years - since the dreaded transition from preschool to kindergarten began - to arrive at this realization. As I was staring at the overwhelming task of getting her safely into a full inclusion setting for kindergarten, I kept thinking how I would need a combination of luck, charm and sheer will to accomplish it. After the transition was made, and we were enjoying a wonderful year in kindergarten, I thanked my lucky stars for the outstanding principal, the supportive special ed. director, and the wise and experienced classroom teacher. Mid-year of kindergarten she got a new one-to-one aide and suddenly life got even rosier. Kids were more accepting of her and were interacting a lot more, she made great strides verbally and socially, which have continued to the present. Then I decided it was this new aide who was the key to our success. She followed E. to first grade, and again I thanked God for putting all the right people into our school life. A wonderful first grade teacher - now I could actually see how her strengths were in some ways preferable to those of the kdg. teacher. Then, bad news: the principal - a key component to the awesome team - was moving on. Sorrow. Dread. What will happen now? Well, the new principal... just as nice as the old one (the former one - she isn't old!) Not as proactive, perhaps, but I have no complaints. We survived the transition - again. Second grade teacher - amazing. Completely devoted to fostering inclusion and independence for Erica and all the kids in her class. How do I keep getting so lucky? Hmmm. Aide has back problems. Erica now weighs over 50 lbs. (a major victory for a micro preemie who never registered on the weight chart until the age of 8). Aide might be forced to look for another job if her health cannot take the transfers etc. Gloom. Despair. But then again...
Things have somehow miraculously seemed to work out thus far. Is it really divine intervention or just dumb luck? Perhaps a little bit of both, really. But what are the constants in this equation? They are: my amazing, beautiful, smart, funny, strong and wonderful KID, and... me. I am her best advocate. I am maintaining communication with all parties involved. I am reinforcing what intervention and therapy are doing. I am reading articles on reading methodology for children with neurological impairment, I am driving her to vision therapy, I am attending conferences on assistive communication. I can do this, and I will - no matter who the teacher is, no matter who the principal is, no matter who the aide is. And we will make it work. I do continue to thank God for all the wonderful people who have made school awesome for Erica thus far, but no matter what happens next - we will make it work. I know I can.
Sigh. I think I shall sleep extra well tonight.
Today I had a bit of an epiphany, and it has lifted my spirits in the midst of the latest seemingly unending onslaught of precipitation in central Ohio.
Erica is in second grade, and it has taken me three years - since the dreaded transition from preschool to kindergarten began - to arrive at this realization. As I was staring at the overwhelming task of getting her safely into a full inclusion setting for kindergarten, I kept thinking how I would need a combination of luck, charm and sheer will to accomplish it. After the transition was made, and we were enjoying a wonderful year in kindergarten, I thanked my lucky stars for the outstanding principal, the supportive special ed. director, and the wise and experienced classroom teacher. Mid-year of kindergarten she got a new one-to-one aide and suddenly life got even rosier. Kids were more accepting of her and were interacting a lot more, she made great strides verbally and socially, which have continued to the present. Then I decided it was this new aide who was the key to our success. She followed E. to first grade, and again I thanked God for putting all the right people into our school life. A wonderful first grade teacher - now I could actually see how her strengths were in some ways preferable to those of the kdg. teacher. Then, bad news: the principal - a key component to the awesome team - was moving on. Sorrow. Dread. What will happen now? Well, the new principal... just as nice as the old one (the former one - she isn't old!) Not as proactive, perhaps, but I have no complaints. We survived the transition - again. Second grade teacher - amazing. Completely devoted to fostering inclusion and independence for Erica and all the kids in her class. How do I keep getting so lucky? Hmmm. Aide has back problems. Erica now weighs over 50 lbs. (a major victory for a micro preemie who never registered on the weight chart until the age of 8). Aide might be forced to look for another job if her health cannot take the transfers etc. Gloom. Despair. But then again...
Things have somehow miraculously seemed to work out thus far. Is it really divine intervention or just dumb luck? Perhaps a little bit of both, really. But what are the constants in this equation? They are: my amazing, beautiful, smart, funny, strong and wonderful KID, and... me. I am her best advocate. I am maintaining communication with all parties involved. I am reinforcing what intervention and therapy are doing. I am reading articles on reading methodology for children with neurological impairment, I am driving her to vision therapy, I am attending conferences on assistive communication. I can do this, and I will - no matter who the teacher is, no matter who the principal is, no matter who the aide is. And we will make it work. I do continue to thank God for all the wonderful people who have made school awesome for Erica thus far, but no matter what happens next - we will make it work. I know I can.
Sigh. I think I shall sleep extra well tonight.
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