Wednesday, November 26, 2008
This may seem to get a little off-track, but trust me, it will all connect. This past summer I decided to hold a giant Birthday Bash in our classroom as a way to celebrate the ending of the summer term. We had several summer birthdays between students and staff and, well, it just seemed like a fun thing to do. We had a special lunch, I put together a fun birthday-themed music "therapy" session, one of the parents brought a pinata, and of course there was cake. It was a blast. About that same time I discovered the blog Micropreemie Twins: The Story of Holland and Eden and read this heartfelt post. A short while later I came across this post by Robert Rummel-Hudson, author of Schuyler's Monster and the blog Fighting Monsters with Rubber Swords. These posts really brought home to me the difference between being a special needs parent and a special needs teacher. For Eden and Holland's mother, the day they were born, their birthday, is one of the saddest, most difficult days of her life. She still struggles with the grief, guilt, and even disappointment of that day. And while her family recognizes and honors her daughters' birth day, they celebrate their Coming Home Day. How cool is that? One of my summer staff members who also worked as a nurse for her student's family, had recently complained about how the student's mother didn't really do much to celebrate the little girl's birthday and how unfair she thought this was. Prior to reading Billie's post I would have been a bit appalled by this myself. But Billie helped me see more clearly what this parent might be dealing with. She had a beautiful little girl who, she was told, wouldn't live long. And on top of that, she was told she was incapable of caring for her child herself and had to have outside help from critical strangers. Through Billie's words and willingness to share her own experience, I was able to empathize with this other parent and understand that her daughter's birthday was most likely accompanied by painful memories and tremendous guilt and grief.
Robert Rummel-Hudson put it very succinctly in his post and shared quote from a key note speech he gave (read the speech; whether you are a parent or a teacher, it is worth the time). I can't say it better than he does:
"It might be the most striking difference between our experience with the world of broken children and yours. As special educators and experts in assistive technology, you have sought out the monsters. You’ve armed yourselves with the knowledge and the tools to fight them, and you’ve gone into battle with your armor in place. For parents, the monsters have found us, in most cases sitting by the campfire in ignorant bliss, totally unprepared."
Wow! I had never really thought about it like that. From a professional stand point it can be so easy to be superior and critical about parents and how they choose to raise their special needs child. It is easy to forget that I went to school to learn how to work with kids with special needs, that I have had extensive training in all the latest techniques and "best practices," and that I have access to the resources that are available. Parents don't get that. Most of them find themselves with the world of disability suddenly and unexpectedly dropped into their laps, all those dreams and desires inexplicably crushed. It's hard enough trying to figure out how to parent a child, let alone meeting the often complex needs of a child with disabilities. I can't even imagine the difficulties of navigating the maze of medical institutions, diagnoses, treatments, side effects, therapies, services, early intervention, constant fear and worry,.... Oh, and taking care of the rest of the family, tending to the house and yard, maintaining a job, planning and preparing meals, walking the dog, and, when time permits, caring for yourself too. My 8 hour work day is spent dedicated to meeting the needs of that special needs child, every minute of every hour. I have few if any other responsibilities during that time. Believe me, when I go home at the end of the day, often exhausted, I am grateful for the fact that I can actually sit down and put my feet up. Not so for the parents I work with. They come home from a long day at work and have to reposition, toilet, feed, bathe, entertain, and keep safe their child with disabilities and tend to the needs of the other members of the family. These parents are consumed by this world 24 hours a day, 7 days a week. There is no break. And they always feel guilty for not following through consistently with school programs. So what? Their child is happy, healthy, growing, and developing. If I do my job right, they should see positive changes at home even if they aren't able to work very hard on it. And when I start to feel resentful about the time ROCKO takes from my "personal" time, I remind myself that those parents don't get personal time. It's a small gift I can give them, letting them know that their child is safe, well-cared-for, and happy for a few hours so they can squeeze in a little time for themselves.
So, back to what I am thankful for: the parents of special needs kids...
Thank you for having the strength to persevere through the surprise and shock of learning your child has special needs.
Thank you for choosing to bring your child into the world when you knew he would have special needs.
Thank you for choosing to adopt your special needs child.
Thank you for fighting "the system" on behalf of your child. It takes unimaginable energy and persistence to struggle against obstacles like pessimistic doctors, selfish insurance companies, and convoluted government programs.
Thank you for being a strong, vocal, loud, obnoxious, demanding advocate for your child. That advocacy makes me a better teacher and your child's education more effective. It makes the world that much better for your child.
Thank you for supporting me as your child 's teacher, and pushing me when I need that push.
Thank you for sharing your child with me. Thank you for your trust and your belief in me and what I can do with and for your child. That is such a huge risk for you and I enter every day well aware of the gift you give to me and strive to honor it in all that I do.
Thank you for including me in your journey through life. It is a true honor to walk side by side and hand in hand with you as we both love your child into the future that he or she deserves.
Friday, November 21, 2008
Now for the not-so-fun side of Ben waking up. Yeah, the spitting is an issue but it's one we can deal with. The real problem is his inner bully has reasserted its big bad self. Right now Ben is being very territorial. The treasured sensory room time? Bah! Who wants the sensory room? Ben wants the SWING with chimes to kick and swing into. Not only does Ben want the swing ALL THE TIME but he also doesn't want anyone else to have it. He will happily leave the swing to go do his work, eat, bathroom, or whatever else we ask, as long as no one else gets in while he's gone. Remember, I have 4 other students at the moment, two of whom use the swing set for standing and one who likes to swing as much as Ben does. He got VERY VERY MAD today when Nicki got the swing at the end of the day. He spent 45 minutes variously shoving picture symbols at us (didn't matter which one, he was bringing them all to us; remember our grab and go system? It got grabbed and went today) and grabbing someone and dragging them over to Nicki in the swing and insisting we take her out and let him in (mind you, he'd probably spent over 2 total hours in the swing today). When that didn't work or we ignored him, he would go over and try to pull Nicki out himself. As we discovered, he is actually big enough to do this now (don't worry, Nicki was never in any danger). Meanwhile Miss Nicki was merrily hitting her step-by-step that alternated between saying "more swing" and singing "I've got the swing and you don't, nah nah nah nah nah nah) and laughing her head off (every time Ben tried to pull her out of the swing she got a free push). We took Ben on walks, gave him alternative activities to do including some favorites he hardly ever gets, offered special snacks, and anything else we could think of. Finally I had to get right in his face and tell him quite firmly ("mean teacher" face and voice) that he was NOT getting the swing and to GO AWAY. He looked at me, river danced, then turned around and STOMPED to his favorite comfy chair and pouted, for about 5 minutes. About this time Nicki had to get her coat on to go home so got out of the swing. Ben promptly ran over to get in. I got there first and put the swing out of reach (his bus was due). What does the little bugger do? Does he get mad? Does he request the swing? NO. He happily snorts, spits, and goes to his comfy chair and LAUGHS. His problem was solved as far as he was concerned.
So now we get to enjoy the odyssey of teaching Ben that he does not rule the universe and that sometimes he has to share. Nor does he always get everything he asks for when he requests it. Sometimes the answer is "no" and you have to move on. We spend so much time teaching these guys the power of communication through offering the opportunity to request what they want then giving it to them immediately. When they finally "get it" the rules change on them. Pair that with dealing with a very stubborn and very strong teenager, and, well, things can get very interesting. It's so hard to grow up.
Tuesday, November 18, 2008
I'm looking forward to backing up all my BM files (and those of my students) to the site. I have one student using BM at home so I think I'll try forming a "group" for him too so Mom and I and the SLP can communicate more easily and share boards back and forth and work on them without having to fight over the jump drive (or forgetting to upload or download to and from the student's computer).
Look for me on the forums. I'm "aodom." Feel free to ask me to be your friend. We can all use a buddy here and there. :-)
Monday, November 17, 2008
Yep, you got it. We're about to undergo yet another transformation. As of January 5 we will officially be a combined middle and high school program. The high school SMD teacher in my cooperative is leaving at semester and there isn't a replacement for her. She only has two students on her case load, one of whom is homebound. Plus, her facilities are woefully inadequate, at about 1/4 the size of mine. There was no way she would be able to manage the needs of my oldest kids who are very equipment and space intensive. With all that in mind, my cooperative director decided to take me up on my offer to run both programs out of my room. WHAT WAS I THINKING?? Actually, I was thinking that this move is in the best interests of the kids and the program at the moment. I'm also thinking this is a good way to [almost] guarantee me the promised extra space in my building and [fingers crossed tightly] a "real" kitchen [dare I dream?]. I was also thinking that I'm really not ready to "give up" my kids yet; I still have a lot of things I want to accomplish. AND this means I get to work with one of my favorite families again. YAY! It also means I get to know a new-to-me student as well as a new-to-me-para (who I didn't have to hire--Yay!; and who I didn't get to hire--ummm...) and fit them both into a functioning and happy, if not always balanced, family. This student's IEP is actually due the first part of January, which is a good thing. I can focus it on the kinds of things she'll be doing through my program where she'll be part of a group with different opportunities than are available when you only have one student. Plus I'll have complete input on what her state assessments will look like.
So, now I get to rethink my program and how we approach curriculum for high school vs. middle school. What should be the focus for the older kids? How do I provide what I consider to be adequate levels of service to an even greater diversity of students? How are we all going to fit into the vans for community outings? Where can a snag a bigger classroom table (and where do I put it when I find it)? And then there's the whole topic of transition [cue dramatic music]. Transition is a huge issue in my cooperative right now, especially in how it relates to writing IEPs (dotted i's, crossed t's and all that). Apparently the state auditors are coming down hard in this area and we're falling a bit short.
On top of everything else, I've been revamping our classroom procedures and, to some extent, our curriculum, or more specifically how we approach our curriculum. I had let my new staff kind of veer towards the 1:1 philosophy ("that's my kid, he's your kid). I really believe firmly in everyone working with everyone so wanted to find a way to steer away from those tendencies. I have noticed some real strengths in different areas in all of The Girls so decided to approach instruction from that view point. So now, for morning work tasks, we are going to have curriculum "specialists" for Academics, PT/APE, Communication (that's me), Technology, and Sensory/Active Learning. I will be requiring them all to gain expertise in at least one secondary area as well. The kids will rotate between us during the morning work session for 20 minutes of structured activities at a time. Some will HATE it (you mean I have to work?) and some will LOVE it (wow! I'm actually getting attention!). It's a tight schedule that will be highly dependent upon everyone's cooperation, and really needs another adult to make it go smoothly. We're going to try implementing it tomorrow. It better work as it took me two hours to figure out the schedule for 2 days! Fortunately we can basically repeat the schedule from week to week even if we change activities. The rotations are mainly dependent upon who is using standing equipment when as we only have one of each type (2 kids using each type) and the kids are generally tired after standing. Pair that with minimizing "in and out" transfers and it got a bit complicated to say the least. I think the system will be good for the kids and it will allow me to do more hands-on and 1:1 training with the staff. I haven't even had time to teach them how to take data yet. YIKES! Fingers crossed....
Saturday, November 15, 2008
Monday, November 10, 2008
And Barrie at OneSwitch.org sent this link to a nice instruction manual about instructing switch use and using environmental control.
And I have a previous blog post on our Favorite Cause Effect Activities.
Any other contributions out there?
Sunday, November 9, 2008
What is a PowerLink?
How do you make a PowerLink work?
What can you do with a PowerLink? Or Why should I get one?
How do you use your PowerLink?
After hearing these types of questions from more than one special educator, some of whom are fairly savvy in the world of assistive technology, I did some quick research to see if AbleNet or somebody else had put out an idea list for a PowerLink similar to the ones that are out there for switch use and using a Big Mack. I was surprised to find NOTHING. Nothing? No ideas whatsoever (OK, that I could find in a 30 minute Google search) for one of the most versatile and easiest to use evironmental control units on the market? So I decided to make this the topic of my next blog post.
First, an introduction to AbleNet's PowerLink 3 environmental control unit. It is basically a box that allows you to adapt electrical appliances and devices so they can be accessed using switches. There are four basic modes of operation: timed seconds, timed minutes, latch, and direct. The timed modes allow the device to run for a set period of time (0-60 seconds or minutes) after the switch is activated (also known as press and release). The latch mode is basically an on/off switch: one switch activation turns the device on, the next turns the device off. Direct mode requires the switch to remain activated to cause the device to run (also known as press and hold). The PowerLink 3 allows you to connect up to 4 different appliances (2 on each side) with 2 switches (which means that when the right switch is pressed both appliances on the right will run at the same time). Some of the units allow for wireless control using an Airlink switch. You can also achieve wireless control using a jellybeamer transmitter and receiver (my preference because you don't have to have a direct line of sight between the transmitter and receiver). Essentially you can plug any electronic device into a PowerLink, but there are some limitations to the amount of juice it is able to handle. For instance, I think a large TV would overwhelm the device and I don 't think it could handle all the Christmas lights on your house, although it did just fine with the Christmas tree. It opens up participation possibilities to kids with physical and other challenges in a host of areas including daily living skills (cooking, cleaning, personal care), leisure activities and play, vocational skills, and artistic expression. I couldn't live/teach without it (as noted in a previous blog post). In fact we have four in my classroom with an additional out on loan and they are used every single day.
Now for the question of what to do with a PowerLink...
Use the timer to work on cause effect skills using a tape player and a tape of favorite music or stories (sorry, CD players do not currently work with a PowerLink because interrupting the power flow to one completely stops the play; would love to see AbleNet or somebody else work out a solution to this; the "adapted" players I've seen out there only allow for latching/on-off activation and they are battery hogs). Works great with a radio too.
Use latching to allow a switch user to control the music during a game like musical chairs.
Use latching to allow a switch user to control the pacing of an audio book or to pause the story when given a cue by the teacher so the class can engage in discussion.
Use either timed seconds or direct mode to operate a hair dryer to:
- dry hair after swimming or bathing
- dry paint on an art project
- dry dishes
- participate in science experiments
Use to adapt appliances like the mixer, blender, or food processor during cooking activities.
Attach blinking lights and place on direct mode to allow a child to explore switch use (see Two Switches to Success by Linda Burkhart, et al). Or use timed mode to more actively engage a passive student in sensory activities.
Use latching and a paper shredder to work on following directives during vocational training (turn it on now; OK, turn it off).
Using direct mode, attach two different toys/devices to allow a student to explore (two switches, two uses). Direct mode allows for greater independence than timed. In timed mode the first device activated will continue operating for the preset time no matter how often the student activates the other switch. Direct mode removes this exploration obstacle.
Allow the student to operate his own electric toothbrush (if it plugs in) or water pik during self care.
A water pik can also be used in a water table or to water plants, just be sure to keep the electicals safe from water intrusion.
Use the mode of your choice and attach to a vibrater/massager mat (we found ours at Wal-Mart) so the student can control the activity without getting overwhelmed.
We like to hook our bubble machine from Wal-Mart up to the PowerLink and blow away.
Adapt a fan for a student who overheats easily, who likes to feel moving air, or to blow on and move a mobile.
Attach to a lamp using latching mode so a student can signal for assistance during nap/quiet time or simply control the amount of light in his environment (like in a multisensory space).
Allow the student to work as a partner with someone else to operate a vaccuum or dust buster.
Saturday, November 8, 2008
Friday, November 7, 2008
Probably the singular most important piece of equipment would be an accessible computer complete with Intellitools keyboard or Intelliswitch and a touch screen. We use our computers (yes, that's plural) all the time every day. They are essential for communication and instruction as well as for accessing resources and communication tools such as email.
Along with a computer would be Boardmaker. Boardmaker is probably the most used piece of software I have. And, of course, I'd need a good quality color printer to go along with it.
My digital camera would have to be on the list. We use it to take photos of objects and places, etc. for communication books as well as to document activities, accomplishments, etc.
A Powerlink to adapt a variety of devices in addition to at least one switch. Powerlink = Independence and Participation in my classroom.
An ipod. We have three that are used in my room and the kids love them. They are set up with their favorite music plus audio books. The kids love being able to listen to what they want without interference from others, creating their own play lists, and just generally doing the same thing as their peers. Plus they are infinitely portable and contain a HUGE amount of music and stories.
At least two Little Step by Steps. My kids use them for everything from simple cause effect social communication to telling jokes to giving instructions to two switch step scanning. They are constantly in use in my classroom.
Velcro. There are more uses for this awesome material than I can count.
Intellitools Classroom Suite. I make lots of adapted learning activities and digital books using this program. It would be high on my list of essentials.
An Actitunnel, especially for my particular students. We have multiple students using ours throughout the day and it is one of the top favorite pieces of equipment for the kids (the ipods are the other top favorite).
At least one "blinky light," whether it's Christmas lights or a mood light of some sort.
My list of favorites on my computer (can't access social bookmarking at school; basically if it's considered a "social" tool, it's forbidden).
I know there are other things I would miss tremendously if I didn't have them (Easy Stand stander, Somatron Vibrosonic music chair, active learning equipment, swing set, our collection of cause effect toys, the Smart board, jelly beamers, ...) and there are probably one or two things I've missed. After 14 years of teaching, 12 of them in the same place, I've collected a lot of stuff. But the above are probably the true essentials to effective instruction in my classroom (assuming that all the needed peripherals for basic positioning and caregiving would be in place). What would be on your list? What tools and resources would be indispensible to you?
Thursday, November 6, 2008
Yesterday's challenge was to add a widgit, specifically something like clustr maps to see where visitors hail from and if you should add other features such as a translator button. I think the clustr map widgit is cool and there is something similar in Stat Counter. I found it interesting that I've had visitors from Australia, the Netherlands, the UK, Brazil, Israel, and Germany as well as the expected U.S. and Canada.
Today's challenge was to have your blog looked at by somebody with "fresh" eyes. My blog really hasn't been up and running for all that long so I wasn't sure how helpful this would be. I know what I like and don't like from other people's blogs and that has guided me in making decisions for mine. For example, there are soooooo many fun and cool widgits out there, but I think there can be too much of a good thing. Too many widgits make the blog look crowded. Pretty much, if I'm not going to use them for something I'm probably not going to add them. My husband recently spent some time on my blog for the first time. He seemed to like it, was most interested in the photos vs. the "non-kid" content (he knows "my" kids and since we do respite care in our home has spent time with several of them), and had no trouble navigating my (very simple) blog. I've been trying to get him to work on the blog I helped him start (he's restoring a WWII era military vehicle to add to the collection at the World War II History Center he is helping to develop), but so far we haven't moved passed the set up stage. Maybe now that football is over....
Tuesday, November 4, 2008
As you've probably guessed, the election was the center of school today, both in my classroom and throughout the building. Believe me, the debates between middle schoolers can be just as intense as between adults about who should be President. Even myy students, who certainly don't understand all the issues and probably haven't had as much exposure to the campaigns as their "typical" peers, have formed strong opinions. Some of them I think are based on what they've heard their families discussing at home. Others made their choices for different reasons such as they liked the name or how the candidate looked or how his voice sounded or even because, like typical teens, they want to do the opposite of what's "expected" of them (asserting that independence from their families). Not too different from the general populace, in my opinion. I think we did a good job as adults in my room about not prejudicing the kids' choices or trying to unduly influence them. Yes, they have heard some good discussion about the merits, or perceived lack thereof, of the various candidates. Yes, the four adults in my room are evenly split about who we support, with some of us being more vocal than others. But in the end, I think the kids really did choose who they wanted. We had a good time learning the basics about the election, who the candidates are, and how voting works. I adapted last week's News-2-You about the 2008 Election which we read and discussed together. Then we participated in a school-wide mock election being run by the 7th grade social studies classes complete with election booths, "real" ballots, and exit pollsters. Building-wide, the election went overwhelmingly to McCain/Palin, not too surprising for a very conservative Kansas community. In our class, the election went to Obama/Biden by a margin of one vote.
Whichever candidate comes out on top tonight (or tomorrow or next week or whenever the "final" count is made), I hope he is able to be an effective leader for our country and can bring about the substantive change that is so desperately needed. So best wishes to both sides, but I really hope "my side" comes out on top (and he'd better do a good job if he does)!
Monday, November 3, 2008
Day one: The About page--Who are you and what is your blog about?
I think I have a decent About Me page--enough info so that you know who I am and my experiences but not so much that I'm just hanging out there in the breeze (it's good for a girl to keep a little mystery, right?). I doubt I make too many changes to it right now. Most of that "getting to know me" stuff can happen through reading my blog entries. As far as the purpose of my blog, when I first started it I had no idea where it would go. I was originally inspired by Kate's blog and had toyed with the idea of doing a resources-type blog, but I feel like Kate's blog is SOOO good and SOOO thorough, that I really didn't "need" to do that. I could just reference her blog. Then I got to thinking that there just isn't much out there on the practical aspects of teaching kids with severe and multiple disabilities. I always have people asking me for ideas and I'm a really strong "ideas" person, so why not make the blog about what I do with my students, the day-to-day nitty gritty? So far, the parent feedback I've received has been really positive because the blog has allowed them to connect with me and their kids and their kids' school experiences in a new and meaningful way. They also like to see what their kids have been doing and don't mind one bit sharing with the "rest of the world." Since I do my best to protect their identities by not revealing their true names (mine is the only "true name" I will ever use on my blog, at least for the characters in my life) and keeping our exact location as "secret" as I can, everyone seems pretty happy and feels fairly safe. It's also been fun to hear from other people "out there" who do similar things to me and who are also looking for inspiration and collaboration.
Day 2: Stats
I just recently added Stat Counter to my blog. It's intriguing. I have to admit, it's a bit of an ego booster to see that people actually do come and read my blog and I find myself checking my count every day just to see how many visited, where they're from, how they found my blog, and what they seemed interested in (obsessive, who me?). As I gain more information from my stats I hope to use them to make my blogging better. I'm not certain I'll stick with Stat Counter and honestly can't remember why I chose that one (probably because it was used by one of the other bloggers I follow, which is where I get most of my widgits). A couple of other people use Feedburner. Might be worth checking out at some point.
Day 3: Write a thank you note
I want to say thank you to Kate Ahern for both being such a wonderful resource for those of us in the area of special education and especially intensive needs as well as being the primary inspiration for me starting my blog. Thank you Kate! You truly have been, and continue to be, an inspiration to me. I am completely "wowed" by the amount of work you have put into your blog, wonder how you have the time to locate all those awesome resources, and deeply respect your dedication to your students.
I would also like to say "thank you" to Patrick Black for being the very first blogger to link to me on his blog. That is just "way cool," Patrick. Thanks for networking with me.
Finally, I would like to say thank you to Lon Thornburg for not only writing a great blog with resources and personal experiences in the field of AT, but for also reaching out and creating the Assistive Technology Blog Carnival and encouraging me to become a contributor. I've received more "hits" from his references to my blog than from anywhere else (so far). Thanks for helping me step past my shyness and reticence to really put myself out there.
And, I want to say thank you to my students. They are the true inspiration behind my blogging. If you can't tell, I adore what I do and who I do it with. I am truly and deeply honored to be given the gift of the opportunity to work with these wonderful young people. This is not a "job" for me, it is my life. It is what I have wanted to do ever since middle school when I met my first person with a severe disability. Watching their growth and development, seeing them master new skills, and celebrating all the small, really important things, are the great joys of my life. I love every minute of it and wouldn't trade it for the world. Thanks guys!