Sleep Apnea and Special Needs

Over the years I have had probably a dozen students who frequently dozed off at school. These student's disabilities ranged from Apert Syndrome to Mitochondrial Disease to Down Sydrome to Cerebral Palsy. Only one of my students has even been formally diagnosed with and treated for sleep apnea and that student often refused to wear the CPAP device that was prescribed to treat the apnea . (A CPAP is a Continous Positive Airway Pressure device that basically blows air into the nose or mouth in order to maintain enough pressure to keep the airway open during sleep, there are other variations such as a BiPAP.)

Rarely are students with special needs evaluated for sleep apnea (although it is becoming common practice to rule out sleep apnea before diagnosing ADD/ADHD). This is inspite of 45% of children with Down Syndrome having obstructive sleep apnea and apnea being more common in individuals with sickle cell anemia, muscular dystrophy, mitochondrial disease and other neuromuscular diseases, cerebral palsy, and craniofacial abnormalities. (Here is a list of risks from the Mayo Clinic.)

Can you imagine how hard it is to learn, perform and most of all BEHAVE if you are exhausted all the time? In fact some Down Syndrome specialists think that sometimes what looks like early symptoms of Alzheimer's in Down Syndrome is really sleep deprivation from sleep apnea!

As far as treatment, in children and adults with special needs a CPAP or BiPAP may be used (if the individual is likely to be compliant), but other treatments may also be options, including orthodontic treatment and surgical intervention.

Teachers and classroom nurses of students with disabilities are on the front lines. If students are sleepy in class, if parents complain of frequent night waking, difficult sleep patterns or snoring, it might serve the student well to suggest a visit to the primary care physician to discuss the possibility of obstructive sleep apnea.

Here are some links for more information:

• American Sleep Apnea Association
• Children and Sleep Apnea and Overview
  
• Obstructive Sleep Apnea and Down Syndrome
• Sleep Apnea and Down Syndrome

Sites about Sleep for Kids (with sections for teachers and parents)

• Star Sleeper
• Sleep for Kids
  

Related articles

• Procedure helps to eliminate sleep apnea [via Zemanta]
• Medicare Poised to Catch at-Risk Snorers [via Zemanta]

Old Dog, New Tricks: Turning Cassette Tapes into MP3s

We joke around a lot in our classroom. One of the running jokes in the room is about our ancient classroom nurse (who is actually definitely not ancient and is a very good sport about the jokes, including programming herself into the classroom phone as, "Old One"). Last week she asked me something about cassette tapes and I informed her that you can transfer cassettes to MP3 for free using one of those cords that come with every Big Mac and Step by Step from Ablenet (we have at least six of those cords), a Walkman and free software called Audacity. It is up to you to decide if the title "Old Dog, New Tricks" is in reference to the act of converting cassettes to MP3s or in reference to our classroom nurse learning how to do it.

Anyways, over the next couple of days she picked up a Walkman somewhere and asked me to explain the process. We never had time. Yet she came in this morning and told me she had already copied several of her old cassettes to her computer. I was impressed, mostly because I thought I was the only person I knew who was nerdy enough to actually research and do such a thing, but also because this woman still uses 3.5 inch floppy disks to save things on (to her credit she also carries a flash drive hanging around her neck).

To make a short story longer I thought that transferring some of those classroom casssettes to MP3 might be a productive summer project for those of us who have dozens of music or book on tape cassettes in the classroom. So when you pack up your room and leave for the summer be sure to grab your cassettes and one of those cables that comes with the Big Mac and Step By Steps.

Here are the easy directions for basic kinds of people. These directions fo not include how to reduce hiss, clean up the audio or anything like that. Links to better directions follow. Good luck.

Oh, one more thing. Make sure you have enough space on your hard drive or record onto an external hard drive as to not clog up your computer with "Curious George Goes to the Hospital" and "Ella Jenkins Multi-Cultural Songs".

1. Download Audacity. Feel a little overwhelmed by its features. Realize you will not need many of them. Remind yourself all those features are free.
2. Connect your cassette player to your computer. Likely, if you are using a Walkman and the "microphone" input on your computer your 1/8th inch "male to male" Ablenet cable will work just fine. Oddly (or not oddly if you are nerdy about these things) the quality of the cassette player matters a lot more than the quality or the cable.
3. Open Audacity. Start the tape. Hit record on Audacity. Let the tape play.
4. Save the tracks.

Links to better directions:

• Tape to CD (these are the best directions I could find)
  
• How to Do Things
  
• Wiki How (does not use Audacity examples)
  

Not Just Thinking Outside the Box, Nailing It Shut and Standing on it to See Better

Image via WikipediaA friend of mine who teaches middle school intensive special needs told me this story today and I thought it was a perfect example of "not just thinking outside the box, nailing it shut and standing on it to see better".

Last Wednesday her class was scheduled for an end-of-the-year field trip to a local pond to go swimming and have a picnic. At 9:30 in the morning her students were all changed into their bathing suits and having an early snack. Then the minutes ticked by and turned into an hour, finally she contacted the bus company. The bus company told her that they would not be picking her class up until 11:30, which was way too late to leave for a field trip, go swimming, have lunch, return to school and toilet students in time for buses home. The trip was canceled.

Forced to think fast, and very outside of the "box", the teacher dumped left over sand from a craft project on the ground outside and knocked on the door of the home of a neighbor whose house bordered the school. She told him about her canceled field trip and offered him five dollars to borrow his garden hose to create a "water park" in the play ground abutting his back yard. He turned down the five dollars and fed the hose through his fence and turned it on.

My friend's students had a delightful time cavorting in their "water park" in their bathing suits. They played with the hose, threw water balloons and played on their sand "beach island".

Some teachers would have whipped out the worksheets, others would have put on a video, still others would have let the students "do nothing" and thus descend into self stimulation and aggressive behaviors for the afternoon. This teacher took a bad situation and found a way to make it great. In spite of having no bus to take them on their field trip she still found a way to have a "beach day".

Here's to thinking outside the box and then some!

UDL 4 All Wiki

My blogger friend, Paul Hamilton, has created a fantastic new wiki of universal design for learning (UDL) tools. It is called UDL 4 ALL. There are a few things I love about it off the bat 1) he used UDL tools to create his wiki of UDL tools (like webslides) 2) he is welcoming contribution and 3) all of the (free) tools I recommend in workshops and to other teachers all the time are now available in one place. It is definitely worth checking out, bookmarking, sharing and pitching in on.

Korea's AAC Device: KidsVoice

From their website:
About "KidsVoice"

KidsVoice is a tool for AAC (Augmentative and Alternative Communication). AAC allows Stephen Hawking, a world-renowned physicist, to communicate despite suffering from Lou Gehrig’s disease. KidsVoice has developed the first product in Korea, which is also the third AAC device in the world following Canada and the United States. A special education tool for students with cerebral palsy or developmental disabilities, the device is a great aid in speech development, academic learning, and adaptation to one’s surroundings. With 3200 symbolic images, the interface is designed to meet the needs of disabled students.

KidsVoice features the high-performance VoiceText Engine, which generates human voice by analyzing text input. It preserves the natural rhythm of language for accurate pronunciation and intonation. The recently developed KidsVoice supports male and female voice. In Korea, all other electronic products do not offer a male voice as it takes up more memory. However, with KidsVoice, users can choose between male and female voice.

More notably, the natural language processing function produces natural voice even when there is improper word spacing. Also, commonly used sentences can be easily recalled, and there is real-time recommendation from the vast database of 1500 sentences. KidsVoice allows editing of symbolic images as well as voice recording and playback. The device is portable, strongly built, well-designed, and comes at an affordable price that is one-third of foreign products. KidsVoice can be used by anyone with autistic disorder, language disorder, cerebral palsy, mental retardation, developmental disability, and hearing difficulties.

KidsVoice is optimized for use with Microsoft’s Win CE. Developed with Visual Studio.NET, it operates on a Compact Framework platform. Even with Win CE.NET’s limit of 32mb per process and a low-end CPU, KidsVoice has resolved the problem of slow processing for the 3200 symbolic images and 1500 recommended sentences. Noted for its 2004 launching of the KAIST Technology Development Team, UBQ has participated in active research since 2003.

Beware the Flavor of the Month

Every few months I receive an e-mail from somewhere in the world, usually from a parent, occasionally from a teacher, about a student who has just received or is about to receive a very expensive AAC (augmentative/alternative communication device). Invariably the e-mail tells of how the child has or is getting this new device and it is the wrong device for him or her. This baffles me because there are more than thirty companies selling dynamic display AAC devices (see left) and even more selling access systems and low tech AAC. Here are the most common reasons why the device is wrong for the child:

• the device is far too complicated for the child
• the device is far too simple for the child
• the parent/teacher/speech therapist does not know what to do with the device and will not be getting any training
• the child does not want a device/wants nothing to do with the device
  
• the device is not physically accessible to the child (does not scan, did not come with key guard, etc)
• the device would have been ok, but has been programmed poorly
• the device would have been ok, but has never been taken out of the box
  
• the child cannot see the screen/text/icons and the device does not have auditory prompting/auditory prompting has not been programmed
• the device is too heavy/is not portable
  
• the device cannot be seen in the sun
• the battery life is too short
  
• the child has severe aggressive behaviors and the device is likely to be destroyed
• the device has not be trialled with the student in real life settings
  

Here are the reasons why the child is getting the wrong device (according to the e-mails):

• "they were sick of waiting" (and now they will have to wait five more years for insurance/the school district/etc to pay for the right device)
  
• "they are getting everyone the same device" (flavor of the month)
• "the sales rep told us this was the right device for him" (of course they did, their job is SALES)
• "the other devices were too expensive" (aka they didn't want to take the time to do all the paper work to get funding for a more expensive device or they don't believe in this child enough to do the work for him or her)
• "they don't need a trial because he is so good at PECS" (passing pictures isn't the same as dynamic display with voice output)
• "they will teach her not to throw it" (I believe AAC decreases negative behaviors, but you don't start teaching that with an $8,000 device)
• "I think the specialist ordered it because she wants to play with it!" (we all like tech gadgets, but that isn't a good enough reason to order the wrong device for a child)
• "they were trying to be helpful" (see the end of this blog entry for an example)
  

In the end, like everything in special education, parents need to be out there advocating for their children. They need to "believe but verify" when the experts gives them information. When it comes to something as important as communication it is best to have a second and even a third opinion.

Here are my choosing an AAC device tips for parents/advocates:

• Make sure the person/team evaluating your son or daughter for an AAC device is an expert at three things 1) speech/language and cognitive development, 2) current AAC and access options and 3) your child.
  
• Don't trust sales representatives, while they are generally good and well meaning people; they are sales people whose goal is to sell. Definitely don't trust sales reps if they have been selling for less than three years or cannot answer questions about the device (for example we asked one company rep about eye gaze tracking and he brought us the Smart Nav which is head tracking not eye gaze tracking and in the same session he told us it was not possible to program random responses so I had to log onto the knowledge base and show him it was). A sales person has no part in an AAC evaluation.
  
• Make sure that the process of choosing a device, an access system and a mounting system is done by the assessment/educational team.
  
• If the sales rep tells you something new is coming out on the market call or e-mail research and development (not just different sales reps) at the company to verify that information.
  
• Never order anything blind, get rentals or trials of everything, from the AAC device itself to the access system (switches, eye gaze device, morse code controller) to the mounting system and take data. The perfect AAC device is nothing if it is too heavy to carry for two hours at the mall or if the mount keeps slipping and it droops to the floor every 45 minutes.
  
• Make sure the batteries will last as long as you need them too and find out if a spare battery pack (or two or three) is an option or perhaps if it can run on a power chair batteries and if so what accessories you need.
  
• Make sure you are choosing the best means of access. If eye gaze is best, don't settle for scanning because the device the specialist knows the most about doesn't have a fire wire port, instead explore the 30+ links to the left for companies that sell a device with similar or the same software and a fire wire port. I promise you someone out there sells a device that can be matched with the software, access system and mount your child needs.
  
• Once you have the sample device set up the way your son or daughter will use it and try it out, have several conversations and see how it goes. Is the interface user friendly and intuitive? Is the access method simple, will it cause fatigue? Can you find or create important messages? Can you see the screen? Do you like using it? Is it meaningful? Is it fun?
• Keep reminding the team that you are willing to take the time to get this right, so long as they are doing their jobs (trying devices, taking data, teaching access and language skills, etc). Remind them that once your child has the device he or she is "stuck" with it for five years (the least amount of time it takes for another device to be funded)!
  

To paraphrase someone on a listserv I am also on: Don't just think outside the box, nail it shut and stand on it so you can see better!

Assistive Technology Blog Carnival

Assistive Technology Blog Carnival #4, Issue: "Grab Bag"
Deadline: June 27 for submissions; Will be up June 30.

The next edition of the AT Blog Carnival, our 4th, will be out on June 30. We are calling for submissions by June 27 from those of you who have blogs and would like to submit a post on AT. This issue is a "grab bag" because we want to open this wide for folks to share whatever they have in their post archive or something new they would like to share on assistive technology. As submissions come in, I will group them as well as I can into categories. So, we want to hear what you have to say. What have you been learning about AT lately? What new gadget has you intrigued? What new area do you think is a frontier in research and development for servicing disability?