Technology Can Save a Life

One of the worst fears of any parent is that their child may go missing one day. That fear is amplified when the child is ambulatory, unable to understand danger, and is non-verbal. This article discusses one way that parents can address those concerns. "Unique Piece of Technology Could Save Lives By: Hollie Hojek hhojek@kcautv.com Trey Michaels is your average 8-year old boy, who loves movies, computer games and his IPad. But unlike many other kids his age, he doesn't just enjoy unique technology, he wears it. It's called a life savor bracelet. It's used to help find someone in case they runaway or get lost. And that's exactly what happened to Trey Michaels about two years ago, when he wandered off in a shoe store. Although he was found, just minutes later, Trey's parents decided they weren't going to take another chance, especially when it came to their son, with autism. "You hear about those kids who run away... And we just think thank goodness we have this bracelet for Trey because you just never know," said Trey's mom, Shana Michaels. Twenty-four hours a day, Trey wears the bracelet around his ankle. It's fitted with a personalized tracking device, and batteries that they check every morning. Now, if Trey were to runaway, all his parents need to do is call 911 and local authorities immediately begin tracking his whereabouts. "If he were at school surrounded by fields... Or daycare... Right by the street and take off in any direction he could be gone.," said Michaels. Not only that, with his autism, Trey doesn't always have the ability to speak. We could be calling for calling, and he wouldn't answer us, or he could be injured somewhere and he might not make a sound," said Michaels. But with this bracelet, he's got a little bit of a safety net, and a little less worry from mom and dad. "Before without the bracelet, if Trey were to runaway... Whew... I'd probably be a ten on a scale of ten, but now with the bracelet, I'd probably be an eight, we'd still be very concerned, but at least we know there's some steps we can take to be proactive.," said Trey's dad Tony. And this little piece of plastic is one of them, no matter how many more close calls Trey runs into. For those involved in Project Lifesaver, they are having a training session on November 16th and 17th." If you would like to look into this further, go to http://www.projectlifesaver.org/ If you are in my local area, Montgomery County, MD, then this is what appears on our county page: Divisions/Stations — Project Lifesaver PROJECT Providing a rapid response to missing persons and peace of mind to caregivers and their families. LIFESAVER Home | Application Process | FAQ | Useful Links | News/Resources | Contact Us Project Lifesaver is a proactive response by the Montgomery County Department of Police to identify those individuals within the community who have a propensity to wander and not be able to return home. Caregivers of individuals that have a propensity to wander due to a diagnosed medical condition such as Alzheimer's, Autism, or Down Syndrome are provided with information and tools to prevent episodes of wandering. If necessary, the individual may be outfitted with a trackable RFID bracelet. Continue to program description

Patience

Last week we had a home visit from Natalie, Val's trainer at Fitness for Health. With Val's Suburban in the shop for repairs, I was nervous to take her 30 minutes each way in my little car in case she became agitated during the trip. Although we had to pay for the travel time for Natalie, it was an opportunity to work on Valerie's tricycle riding skills. It was a beautiful day for November and perfect for doing an outdoor activity. We got the trike out of the garage and took it across the street to a protected side road that gets very little traffic. Val walked out of the house nicely and willingly got on the trike. She steered as we pushed, and all went well until we came to the part of the road where a noisy truck was parked. Something about that truck and the sound it made, upset Valerie and she got off the trike and began to have a tantrum in the street. I went back to our house to get my car and drove it to where Valerie was sitting in the street, which motivated her to get up and climb inside my car. I drove back into my garage, closed the garage door and smoothly transitioned Valerie back to her room for indoor recreational activities. Afterward, Natalie and I chatted about how things had gone with our first attempt at tricycle riding. She was happy that Valerie got on the bike and had stayed on it for several minutes until the distraction of the truck. Valerie loves working with Natalie because Natalie is happy for whatever Valerie is willing to give to an activity. Natalie respects Valerie's feelings, interests and limitations on any given day. Some people respond to being pushed, but Valerie pushes back. Everything is on her terms, at her pace, and nothing can be forced without negative consequences to all concerned. I agreed with Natalie, that it was a positive start, and keeping Valerie's experience with Natalie a positive one is critical to her continued willing cooperation during future sessions. I have learned to expect progress in any area of Valerie's learning to take several months, if not years, of work on a weekly basis. Those people who have been successful in their work with Valerie have had to have faith in Valerie and themselves. Those who are in a hurry to get results and who want to be in charge become discouraged before they see what she is capable of. It took over a year to get Valerie to stay on a horse for more than a few minutes during therapeutic riding sessions. It took about 5 months for our speech therapist to get Valerie to want to work with her for a full hour most sessions, and it took about the same length of time for the tutor to get her engaged in work for most of an hour long session with hardly any behavior outbursts. Valerie is kind of contrary, like her mom. When she understands that no one is going to force her to do more than she wants to do, then she becomes more willing to participate for longer periods of time. She becomes happy to see a therapist who respects her wishes, lets her take a break or move on to another activity if she wants to stop. Then the the therapist, staff and I begin to see what she can really do, and we see skills grow. Building rapport and trust first is critical to making progress with Valerie. Keeping things low-pressure and relaxed is important to making progress with her. If Valerie is using all her energy to fight for control, she isn't learning anything. Natalie said, "I wish you could talk to some of our parents at Fitness for Health. Some ask me what progress was made after one session. I was just happy that the child was focused during that session." She and I understand that progress takes time and patience when working with a person who has special needs. She is a perfect trainer for Valerie because she appreciates what Valerie gives to each session, and if that is only 30 minutes of work without any inappropriate behaviors, even though the session is for one hour, so be it. Valerie leaves happily, and is that much more willing to come back again the next week and work for 40 minutes because it was fun last time. I would say to parents who expect quick results, that it will not happen on your time schedule but it will happen if you are patient, accepting, and respectful of your child. A therapist can give your child what they need to move forward if you take away the pressure for measurable results in a specific period of time. Take the pressure off of your child and the therapist and let it take as long as it takes. I came close to giving up Val's sessions at Fitness for Health before Natalie became her trainer. Valerie was spending most of her sessions there fighting with other trainers and her support staff to leave the place almost as soon as she arrived. It had become a negative experience for her and at times she wouldn't even leave the car to go inside when staff arrived with her. Then there was fire in the building where the sessions took place. The sessions were cancelled for about 7 weeks as a result of repairs. When she returned, it was after a home visit by a new trainer, and the facility had moved upstairs and had a different layout. We had some tantrums during the first couple of sessions with Natalie, one really rough one, but things improved really quickly and our last session at the facility was 50 minutes of participation with no behavior problems at all. We started slowly, with only once session a week, but now things are going so well that I am ready to increase her schedule back to two sessions a week, which she had before the fire. I am thankful to the therapists and trainers who have worked with Valerie when they did not see progress, but believed that Valerie had it in her and believed in their own ability to find a way to bring out her potential. They didn't give up or become discouraged and it paid off for them and for her.

My Daughter Addressed Me!

Last night, sitting together on the family room sofa, and watching a little nature show, my daughter turned to me and said,"Mom, shish?" The "shish" is her approximation for goldfish crackers. She wanted some. The first word surprised me and my husband. She has said "Mom" for years, usually to someone else, to ask to see me. "Mom?" has always been a request that meant "I want Mom." But, last night, she said my name to me, to get my attention, so I would know she was talking to me, and that is new. I can't remember another time that my daughter has addressed anyone, including me. I don't know if this is the result of her communication growth through speech therapy, or just a one-time thing that will never be repeated. I liked it, and I hope it happens again. It is a small thing, but it meant a lot to me.

Follow Up to Communicating with First Responders

I called Frederick Memorial Hospital yesterday to find out which ambulance was responsible for transporting my daughter. With their help, I called the number that they provided and left a message for someone to call me back to discuss what happened. My goal was to determine what went wrong, and what if anything I could do to prevent an EMT from overriding my authority in the future. I received a callback last night from a man who supervises the EMT supervisors, and we had a very helpful discussion to both of us. For my part, he suggested that I ask to have an EMT supervisor involved if I am ever in a situation again where an EMT will not listen to me. He agreed with me that the EMT's did not have to transport my daughter to the hospital if she showed no signs of injury, just because she was not competent to decline transport. He told me that if I were on the scene of the accident, I would not be asked to show ID, and so the issue of proving my identity should not have been a big concern over the phone. He told me that someone had asked to provide training regarding care of patients with autism to the EMTs under his authority recently, and that he would follow up and make sure that his EMT's received that training. In addition, he planned to issue a memo to his EMTs and supervisors regarding appropriate actions in future situations like ours. As I suspected, sometimes EMT's get in trouble for using their own common sense and become a bit gunshy about doing so as a result. That doesn't mean that there is not a way to get support for them and for patients when there is a difference of opinion about what is the correct course of action.

Communicating with First Responders

A week ago, my daughter was in an automobile accident on her way to the zoo. She and her staff did not appear to be injured, according to the report by the staff member who called to inform me of the accident. The police were not on the scene, and there was another automobile involved, so I called the police from home to report the accident and get help on the scene as soon as possible. Shortly after, my staff called me back and told me that the EMT's wanted to transport my daughter to the hospital to be examined because she could not respond to questions regarding her well-being. I determined that my daughter was not upset or crying, or indicating distress in any way. The airbags in the car had not deployed, and my daughter was seated in her restraint harness in the third row of our Suburban, while the staff had been located in the first and second rows and were fine. I asked to speak to the EMT, and asked him to allow my daughter to remain in the vehicle with her staff until I could pick them up. He said that he would have to take my daughter to the hospital because her staff did not have power of attorney to make decisions regarding her care, and because he could not verify that I was who I claimed to be. I told the EMT where to find the First Responder form that I had ordered from the autism society, and that was located in the fanny pack that always travels with my daughter and her staff. The form lists me as parent and legal guardian, and provides my contact information. I suggested that he call me back on the phone number listed on the form to verify who I was, but he would not listen. I explained that he would increase the chances of an aggressive tantrum that could result in injury to my daughter or others if he restrained her in an ambulance and that she was safer in her own car in her safety harness with familiar staff. I was only a 25 minute drive away from the scene of the accident. He refused to follow my instructions and insisted that my daughter and her staff leave the vehicle and travel in the ambulance to the nearest hospital and threatened to leave the staff behind if they did not come immediately. They were not permitted time to return to the car for my daughter's communication device, and had to leave it behind to be retrieved later. Ironically, when I arrived at the hospital, the nurse allowed me to refuse medical care for my daughter and to take her home without being required to show any proof of my identity or relationship to my daughter. She was, and is, fine. If I leave town, I always leave my daughter's staff written permission to make medical decisions for her in the event that I can not be reached. I am hesitant to do that when I am nearby. The First Responder form that is always with my daughter should have allowed anyone on the scene to call the phone number provided to assure them of my identity. How would I even know that the form existed and where to find it if I did not put it there? I think that these first responders put my daughter at greater risk by refusing to use simple common sense. I am not sure what the solution to this problem is. I will write a follow up post when I figure it out. Feedback from anyone who is familiar with this problem would be welcome. I really thought I had adequately prepared for emergencies by ordering and completing the form that is offered by the autism society, but when it was actually needed, it did not help.

Treatment Helps Non-Verbal Autistic Children to Speak

If you have a child who has PDD and is non-verbal, this article might be of interest to you. I have copied it for your information. The original article was printed in Health News. "Study tests novel treatment developed at BIDMC BOSTON -- A new treatment can help nonverbal children with autism to develop speech, according to a proof-of-concept study led by researchers at Beth Israel Deaconess Medical Center and reported in the September 29 issue of the journal PLoS One. Known as Auditory-Motor Mapping Training (AMMT), the novel treatment builds on the observations that children with autism – who typically struggle with communication, as well as social interactions – often respond positively to music. Autism affects an estimated one in 110 children and one in 70 boys. ”Communication deficits are one of the core symptoms of autism,” explains first author Catherine Wan, PhD, a researcher in the Music and Neuroimaging Laboratory of BIDMC’s Department of Neurology and an Instructor of Neurology at Harvard Medical School (HMS). “It has been estimated that up to 25 percent of all children with autism are nonverbal, but surprisingly, not much is out there treatment-wise that directly helps these children to speak.” The AMMT treatment uses a combination of singing (intonation) and motor activities to strengthen a network of brain regions that is thought to be abnormal in children with autism. “We developed AMMT, in part, because another intonation-based therapy, known as Melodic Intonation Therapy, had been successful in helping stroke patients with aphasia recover their ability to speak,” adds senior author Gottfried Schlaug, MD, PhD, Director of the Music and Neuroimaging Laboratory at BIDMC and Associate Professor of Neurology at HMS. After eight weeks of AMMT treatment (five days per week), the six children in the proof-of-concept study -- who ranged in age from six to nine and were previously completely nonverbal -- were able to approximate whole words and phrases. The children could also generalize their speech production to words that were not practiced during the therapy. “Noticeable improvements in speech were seen as early as two weeks into the treatment,” explains Wan. “More importantly, the improvements lasted as long as two months after the treatment sessions ended. “In the future, we plan to compare the effectiveness of AMMT with a control intervention,” she adds. “For these nonverbal children to say their first words is especially gratifying for parents, and represents a critical step forward in their language development.” This study was supported by The Nancy Lurie Marks Family Foundation and the Deborah Munroe Noonan Memorial Research Fund. In addition to Wan and Schlaug, study coauthors include BIDMC investigators Loes Bazen, Rebecca Baars, Amanda Libenson, Jennifer Zuk and Andrea Norton, all of the Music and Neuroimaging Laboratory; and Lauryn Zipse of the MGH Institute of Health Professions. BIDMC Contact: Bonnie Prescott Phone: (617) 667-7306 Email: bprescot@bidmc.harvard.edu "

Dynavox Maestro

I was a graduate student in 1996, and was in an elementary school in Arnold, MD to do an observation of a 4th grade class. In that class was a girl who had no ability to speak. When she first came to the school for mainstreaming, she could only scream. When I arrived for my observation, she had been provided with a Dynavox communication device and had learned to use it. She could carry on conversations with her classmates and her teacher using her Dynavox and no longer needed to scream. I thought then, how wonderful it would be if V had access to something like that. It was out of reach for us at that time. The device is very expensive and, although medicaid would pay for the device with proper paperwork, V did not have medicaid at that time. It is possible that her private insurance would have covered it, but a speech language pathologist would have needed to write a lengthy report to justify the need for the device. V was not making great progress with her speech therapist at that time, or really at any time that she was in school. Years later, I asked the school speech therapist about pursuing the Dynavox. Her response was that V needed to master less complex communication systems before she would be ready for it, and the matter was dropped. Without her support, it was impossible to get the funding necessary to obtain the device. However, in my mind, providing V with such a device that would allow her to say what she wanted or needed to say, was the ultimate goal toward reducing her frustrations. Having Lauren, our current speech therapist, begin to work with V 2 and a half years ago was the beginning of making real progress toward that goal. Lauren has been building V's picture vocabulary weekly and teaching her how to use the pictures as a means of communication. Finally, V had someone who believed in her ability to use something more advanced to express herself and we began the application process to get V her own Dynavox Maestro device. Lauren completed the report that is required by Medicaid, which confirms the need for the device and the ability of user to access the device. I had V's primary care physician write the prescription for the device, as durable medical equipment, and the Dynavox representative put together the application packet and sent it to Medicaid for approval. The process began in July, and we had our device by the end of September. The day the Maestro arrived was a really exciting day. I had waited 15 years for my daughter to have access to this. We are just at the beginning of this process now. Lauren and I have to learn to use this device and personalize it for V. V's tutor and her support staff will have to be trained to use it with her has well. We can't get our initial training meeting with the Dynavox representative until Oct 25, so we are trying to figure out how it works on our own for now. There are instruction manuals, tutorials on the device and also on the Page editing software, and recorded online classes on the Dynavox website. There is also a technical support phone number. I have found all of the resources helpful so far. I was able to get through to a human being quickly at the tech support phone number for assistance with downloading the page editing software. Courtney, our sales rep at Dynavox, has responded to my email questions quickly. Because of page editing software, Lauren and our tutor can prepare pages that they need to work with V from their home computers, save the work to a flash drive, and plug it in to the Maestro when they arrive at my house for their session with V. Right now, Lauren has the Maestro at her house to work with it, but I can still use the page editing software to personalize Vs pages at my computer. We have a lot to learn about this powerful tool, but I am hopeful that it will allow V to speak to us the way she wants and needs to. She will have to learn how to navigate her way through the device, but she learns what she wants to learn pretty quickly. She has shown promise with similar software on the ipad. The accessories include a carry case with a should strap to protect the device and minimize the chance of dropping it, a 9 hour rechargable battery, and a keyguard so that her resting hand won't disable the touchscreen. I am excited to see what a difference this device might make in V's life!