If you have any questions or concerns regarding this project, please call Nannette at (508) 652-9900.
It’s finally Here!
Children’s Hospital Boston’s Autism Language Program
Some of you may remember Dr. Howard Shane from Children's Hospital as our guest speaker last December, when he gave us a sneak peak at some language based software he had been developing for the past few years. Well, it’s now available for everyone and we have it. We will have it available at our office for families to pre-purchase review and then we will eventually donate it to some lucky family! This software was created with our kids not only in mind, but testing it out along the way, with terrific results.
Puddingstone Place Software
An interactive virtual environment that lets children move from room to room in Puddingstone Place, a two-story house with seven photo-realistic rooms. Rich in sound, graphics, and animation, this interactive house incorporates common household objects that can produce their associated sounds, movements, and labels (names) when individuals activate them. For example, the tea kettle in the kitchen whistles and generates steam, producing a text label and voiceover for the word 'kettle.' Puddingstone Place is designed for a diverse group of individuals, including those with auditory, word retrieval, and language learning difficulties, especially those on the autism spectrum. The software can be customized for different ages and learning difficulties. When tailored for children, the program starts up with an interactive, engaging character named Champ who pops up to introduce each room. Children will enjoy visiting the Playroom to play the interactive Dress-Up Champ, Sticky Bubble Gum, and Orchestra games. The software is flexible enough for use with adults, who can turn off Champ and customize the software to assist with word retrieval, and modify the cueing controls to meet their personal needs.
Software requirements: Windows XP/2000/ME
For more information visit the website at: http://www.childrenshospital.org/alp and click on Puddingstone Place
Or call us to make an appointment to review this fabulous software program.
Children's Hospital is also offering a terrific music program called Learning Together with Music, which consists of activities that teach language and social communication on an
innovative CD to promote language learning at home and in the classroom. It includes
instructional video and teaching guide, music video clips, interactive games and
downloadable sheet music. This can also be found at the site listed above.
Specializing in Compounding for Customized Medications
Dennis Katz and his TEAM of compounding specialists at Hopkinton Drug have the ability to meet the special needs or conditions in medication. It is their goal to aid the physician in expanding the possibilities of treatment available. And, while compounding takes time – researching, measuring, mixing, they do all this because they are making this medication custom to the patient. The Hopkinton Compounding pharmacists provide special needs such as:
Pediatric suspensions for antibiotics, steroids, etc., flavored according to the patients taste-apple, cherry, chocolate, root beer, just to name a few. Some flavorings are available as colorless liquids to avoid any dye allergies.
Transdermal medications to be applied to the skin for a topical application rather than systemic absorption of medicine.
Chewable troches instead of liquid for traveling or unit doses of medications for day care, school or camps.
A capsule that could contain a combination of drugs to eliminate swallowing a “whole handful of pills”
Dennis has also created special vitamins that are palatable for people who have feeding sensitivities and issues. They also work with people with gluten and casein allergies, who need nutritional supplements, and need heavy metals detoxification. This pharmacist who is doing this ground-breaking work can be reached at:
52 Main Street, Hopkinton, MA 01748
508-435-4441 or 508-439-4441
One Family’s Story
“Hey you, would you like to meet my new dog?” I looked over at my son, Shane. Did he just say that??? I couldn’t believe my ears and my heart skipped a beat. It was the first day of what we had coined “Mouse Training.
Shane and I, along with Shane’s new service dog, Mouse, were at a CVS in a Worcester mall. Thankfully the clerk immediately jumped into her role and said, “Why yes, I would.” Shane very confidently went on to introduce his new dog. I was filled with joy, mixed with relief, and whole lot of hope. Had we done it again? Had our instincts guided us down the right path, again? I could not wait to call my husband, Ray and share this small triumph. Day 1 of “Mouse Training” and already things looked promising.
At three years of age Shane was diagnosed with Autism. Receiving this diagnosis was devastating, to say the least. The world of autism was new to us and very frightening, we had a lot to learn. So our journey began …
For the last 10 years our family has been very fortunate to work with many, wonderful therapists, teachers, doctors, and consultants. We’ve joined many support groups, gone to many trainings, workshops, and conferences to learn and grow in our knowledge of autism. This was now our world.
Many times along the way we’ve been able to find answers through the professionals we consult, latest research, books, along with other friends and parents. However, Ray and I often find it is our gut feeling, our intuitions, that usually lead the way. Admittedly, most of the time it's a hit, sometimes it's a miss. Often programs, therapies and potential opportunities just feel right, just like this day with Shane’s simple exchange with the CVS clerk. I wondered and hoped if we had been lucky enough to be right again.
It was a year ago that I learned of a new line of service dogs for children with autism. These dogs are often referred to as “Social dogs” or “Therapy dogs.” Ray and I watched documentaries and began to read about the successes families with a child on the autism spectrum were having with a canine companion. A social dog would help with Shane’s therapeutic goals of increased socialization, task adherence, and sensory regulation. Out in public, with Mouse by his side, Shane would be able to work on his social skills by drawing people in to converse with him about what else his dog!
Shane has a love for animals like no other. He is happiest at a zoo or a pet store where he is seen with a smile from ear to ear. Elephants have always been his favorite, but animals in general have an interesting effect on him. We see a calmness that comes over him while watching animals of all kinds. We were intrigued; we felt given Shane’s social challenges and love for animals this was an opportunity we should consider.
In January of 2005, Ray and I took Shane to NEADS (National Education and Assistance Dog Association) in Princeton, MA for an interview. The interview process was very thorough with questions regarding Shane’s various activities, his moods, his anxieties and his behavioral issues. Most of all they wanted to learn how Shane’s autism affects his daily living so they could then begin the matching process for the right dog and train her according to Shane’s individual needs.
It soon became obvious to Ray and I that not only were they trying to plan for a match for Shane, but with us as a family to take on such a unique dog. This needed to work both ways. We were thrilled when Shane was accepted to the program, then the waiting began. We waited an entire year and then finally, the week before Christmas 2005 we received the long awaited call … Christy, the trainer at NEADS, said they had a match for Shane and that she was an adorable Chocolate Lab named “Mouse”. Needless to say we were ecstatic!
On January 9, 2006 we started our training. With Christy, Mouse had already been through intensive training at NEADS, now Shane and I needed to learn how to work with her. Initially, I trained for two days then Shane joined me for another four. We stayed at the NEADS campus house and trained each day. We learned so much and were so fortunate to work not only with Christy, but Dan as well, NEADS’ Autism Specialist. Christy, Dan and myself provided the perfect team to teach Shane all he needed to know about his new dog. We worked hard and on January 16 our hard work had paid off. Shane, Mouse and I passed our certification and brought Mouse home. We had one happy boy, and an equally happy dog!
We also learned that it would be sometime before Shane could manage Mouse himself and this has become a goal.
Our family is so thankful for this incredible opportunity; the people at NEADS are truly wonderful and have been there every step of the way. We are all absolutely crazy about Mouse, she is amazing! She is so lovable and friendly and feels like a “LeBlanc” already! Each day we see Mouse and Shane connect more and more, he loves to play chase with her, (“Mouuuuse, come get me!”), feed her, brush her, and walk her. I love to hear his giggles as Mouse showers him (literally) with kisses when he gets home from school.
Through Mouse, Shane is learning many valuable lessons, he’s learning to take care of her and that she needs him as much as he needs her. He is also learning that people are very interested and curious about his dog, and that it is he, who holds the answers as well as the ability to share them. Ray and I enjoy watching them together, we see a boy who now walks a bit taller and shows an air of confidence we hadn’t seen before. Very quickly they are becoming pals. Shane is very proud of her and loves to introduce her. Usually he introduces her by her name but every once in a while we’ll hear him say, “Would you like to meet my new friend, Mouse?” For this we are most thankful!
For more information, please visit NEADS online at www.NEADS.org.
One last request, when you see Shane with Mouse, ask him about his new friend!
Stephanie, Ray and Shane LeBlanc (Mouse too!)
Change is in the Air
As many of you know, there have been a few changes within our agency given the recent funding from the New Division of Autism. The most exciting change for us is that we have been able to support my position as Executive Director as a full time position as well as hire someone as our Operations Manager. We feel really lucky that we've been able to hire Allison Daigle for this new position. Many of you know Allison and for those of you who don't, you will soon. Allison brings a new prospective and endless energy to this new position. Allison has two children, Justin, 10, who is on the autism spectrum and Faith, 7, who is typical. Allison has been married to her husband, Mike for 17 years and lives in Framingham. She faces many of the same challenges as many of you with both of her children. She brings new ideas and a fresh outlook to our agency. I hope you will all welcome her with open arms and open hearts.Having this new support for my position and Allison's will allow us to be in the office more. In previous years, funding only allowed us to be open Monday, Tuesday and Wednesday, 9:00 - 1:00 pm. Now we will have office coverage Monday through Friday, 9:00-5:00pm. If you need us for a recommendation, advice or just to listen, we will be here! But always call first!
The New Division of Autism, What does it mean for you?
I am sure that like us you have been wondering how this new division might impact you and your child with Autism Spectrum Disorder. As you are likely aware, the new Autism Spectrum Division recently received a legislative allocation of $1.2 million for the 2006 Fiscal Year that runs from July 2005 to June 2006. These monies will be used to develop the infrastructure within the eight DMR (Department of Mental Retardation) funded Autism Centers, to coordinate training initiatives for First Responders, pediatricians and teachers, and to create statewide autism resource materials.
The Autism Centers through out the state will be the front door for families. As in the past, the centers will offer coordinated Information and Referral Resources including information about support groups, trainings and activities for children across the autism spectrum.
Given that this is a new Division within DMR with its own budget, it requires that families who have not yet accessed DMR for services go through an eligibility process specific to the Autism Spectrum Division (this includes families whose children with a Pervasive Developmental Disability (PDD) who have been previously denied services by DMR).
If your child is on the autism spectrum and is already accessing supports through DMR's current children's MR or DD services, you do not have to apply to the Autism Spectrum Division at this time.
In light of these changes, we as a center may need to acquire more information than we currently have in our database. This will most likely be a phone call or a letter to some of you. We are hoping to make a simple and slow transition. If you have any questions, please don't hesitate to give us a call at 508-652-9900.
Assistive Technology Comes of Age
It's not often that I feel enthusiastic about a product, and my experience with many high tech toys is that they're only that, toys that don't deliver much in the form of education or therapy. The Kurzweil 3000 has changed my mind. This is one high tech program that can really make a difference.
Errionleah Turner teaches middle school in Douglas, and her students consist of children with a wide variety of disabilities, from a child almost incapacitated by cerebral palsy to one nearly blind. She's the kind of teacher we all want for our children--enthusiastic, innovative, and upbeat. Ms. Turner, who is a former speech therapist and once worked at NECC, feels the program can help those with Asperger's, autism, opposition-defiance, Tourette's, and children with various neurological and processing problems as well as dyslexia. "It's great for anyone. Everyone can benefit from it, including typical kids who are slow readers." Every computer in the middle school has Kurzweil and everything is networked. Lessons can be saved from anywhere and can be accessed anywhere.
On the Kurzweil website (www.kurzweiledu.com), you can see a demo of the product. It looks like a nice product, and it gives you a very good idea of what it does. But in action, in a real school, that's where you can see the difference this program makes. Ms. Turner is very enthusiastic about it because her children are actually learning. They all love using computers. The blurb on the Kurzweil website states that this product is the "scanning, reading, and writing solution for people with learning disabilities or reading difficulties." Ms. Turner says that the program delivers.
The program is very flexible. Students can pick different voices to read to them, font sizes, and colors. "It individualizes every single thing," Ms. Turner says. The computer reads to you, highlighting words as it reads, or it can simply highlight material to help the child focus on the words as he or she reads. It won't let you skip over words. It can read one word at at time, sentences, or entire paragraphs. The child can check definitions of unfamiliar words and can adjust the speed at which everything is being read or being highlighted.
Books can be scanned into the system, and it can help with writing by helping students through its word prediction capacity. It will give the students options, and the program will read it back to them. Ms. Turner showed me examples from students who would otherwise be struggling. "It makes the playing field even. My kids are more successful on the computer."
For children who can't comprehend the written word and can't go on the Internet as a consequence, the Kurzweil can help by reading material on the internet for them, enabling them to do research, which they can then save. Children who have problems with comprehension can have the same assignment read over and over again to them by the computer, rather than a person. For children who are socially aware, it can be embarrassing to have an adult still read to them. The computer gives them a more socially acceptable form of support. They can sit at the computer with headphones, and no one can tell that they need to go over material a dozen times until they understand it.
"It gives them independence," Ms. Turner says. "It allows children to have access
The Kurzweil isn't limited to reading assignments or the Internet. "You can put anything in it--math, English, social studies. You can get books free from the Internet, like Call of the Wild." Ms. Turner has cut up books and put the pages through the feeder, and the material is then stored on the network for other instructors to use as well. The Kurzweil 3000 can also be used for the MCAS.
"It gives them independence," Ms. Turner says. "It allows children to have access regardless of their problems."
There is a drawback to the Kurzweil, and that's the price. The 3000 program costs $2,695.00 (for Windows and Macs), and in this day of budget cutting, that's not something schools will consider lightly. Kurzweil Educational Systems, Inc. were founded in 1996 and has a long history of producing assistive technology, going back to the Kurzweil Reaching Machine in 1976. This is a local company, situated in Bedford, so they are a fairly well-known company, and they're out in places other than Douglas. This might help a school system look more favorably on such an investment. As a parent of an autistic child who reads well but constantly skips over words and is reluctant to write anything other than bowling scores, it's a product I'll try to get for my son.
"If Douglas can be involved, then other big districts can do it," Ms. Turner says, and I agree. You might bring it to the school's attention the next time you have an IEP. The technology has come a long way from simple readers and is now in a position to make a significant impact.
Man's Best Friend
We have known for a long time that pets bring out the best in us humans. However it has been proven time and time again in nursing homes, prisons and even schools that pets, especially dogs can have a dramatic positive effect on us. NEADS, the National Education for Assistance Dog Services has been in existence since 1976. They provide specially trained service dogs for the hearing impaired; wheelchair bound and even dogs to assist special educators and therapist who work with physically, mentally or emotionally disabled children. Recently Justin Daigle
acquired just such a dog. Heff is a two-year-old "Schnoodle", (half Poodle and half Schnauzer) a specially trained social dog. After completing a weeklong training process with Justin and his mom, Allison, Heff is now part of the Daigle family. Justin if he likes is able to take Heff to the grocery store, library or to his sisters pre-school play. Many people are interested when they see an assistance dog. If you're a dog lover you may even stop that person and ask them about their dog. This is what's happening with Justin and Heff. "People have been more understanding of Justin when Heff is with him" says Allison. They are interested in Heff and then more importantly they are learning about Justin. "Just leaving the grocery store last week two people said good-bye to Justin, now that wouldn't have happened without Heff". Justin has made a wonderful connection with Heff now sharing the end of his bed with him. The Daigle's feel although it's only been a short time Heff has made a significant difference for them. As for the future their expectations are even greater for the social opportunities that Heff may open for Justin. Even their other dog Dexter seems to enjoy the families' new addition.
If you would like more information about service dogs visit the NEADS' website at www.neads.org or you can call 978-422-3255.
Neurofeedback: There may be something to it!
By Anke Kriske
Remember that ubiquitous arcade game, Pac-Man? Versions of it have been reincarnated as a tool for neurofeedback. The brainwaves of children with autism show a pattern that is younger than their chronological age. With neurofeedback, the goal is to help the child's brain reach a more mature state, which will hopefully have an impact on behavior.
Neurofeedback is noninvasive, and if a child likes video games and will watch a computer screen, it's a fun therapy. The games used in neurofeedback tend to be calmer than what's out there now at your local arcade and they move more slowly. The requirements are simple--the child has to be willing to have several electrodes attached to his or her head and an ear and be willing to sit reasonably still and watch a computer screen. The child does nothing other than watch the screen. Everything else is done by the brain. Derek's favorite game, "Space Race," rewards him with diamonds and increasing points, both of which he likes. If the child cannot sit still for the games, then the therapy won't work.
Barbara Scolnick, M.D., is a graduate of Columbia University, board certified in internal medicine and occupational medicine, and the director of the Neurofeedback Group, a nonprofit EEG biofeedback clinic and research center. She does neurofeedback in her home, so it doesn't feel like yet another therapy. For Derek the basketball hoop in the yard that he can use before and after therapy makes it an enjoyable experience. Barbara has been experimenting with neurofeedback for six years now. Her research at the Gifford School with Asperger's children show that neurofeedback makes an impact, and the findings have been good. "Good but not great," she stresses.
Autism Alliance member Mary Lane, whose children, Bernadette and Thomas, have had extensive sessions with Barbara, has had a similar experience. "The year Thomas went, he made improvements in school. It was one of his best years. Bernadette seems calmer after she's had it. It did take a while to see the differences. They don't hit you over the head, but neurofeedback helped with obsessive behavior."
Derek has been undergoing neurofeedback for about four months, and the results have been ambiguous. Changes have not been dramatic, but I have noticed some differences. Probably what impresses Derek the most is that he's now better at playing arcade games to the point where several times he's managed to be among the top ten scores. He's been playing the same games for years, and the results have never been that good before.
Derek doesn't have much in the way of compulsive behaviors, although he did have an extremely annoying fascination for my high heeled shoes and briefcases. He would act out dance routines he saw on TV using my high heels, and sometimes he'd pester me to dance, and I'm sure he was very disappointed that I couldn't duplicate Paula Abdul's tap dancing routines or that my shoes didn't produce sparks. He'd also pester his father to look inside his briefcase, which was inspired by one of his favorite commercials. The shoes and briefcase fixation tends to come and go, but they seem to have disappeared longer than usual. He's also not as interested in watching the same commercials over and over, which would feed his fixation. He still plays with my shoes, but it's more of a game than an obsession.
Derek's largest deficit is language, and he doesn't want to speak in sentences if he can possibly avoid it. He had one memorable exchange with another child also at Barbara's for neurofeedback where Derek calmly and distinctly said his name and age. His usual response is to say "I don't know." After a year of speech therapy and very limited progress, the last few sessions improved quite a bit. Derek long ago mastered the art of squirming, and there have been sessions where he was remarkably still.
How much of this is the direct result of neurofeedback and not the vitamin therapy that I'm also pursuing or simple maturation? That's hard to say, and Barbara is the first to admit this. "More unbiased studies need to be done," Barbara says, "and the process needs to be refined further." After four months, Derek's brainwave shows some changes toward maturity, but not much. Barbara feels that if the equipment and programs can be improved further, more substantial and visible changes will be possible.
Mary and I both have the same impression, that's there's something to neurofeedback that warrants further investigation. From what I've seen and read, neurofeedback helps ADD children calm down and be more focused, and I wouldn't hesitate to recommend it for that. (ADD and ADHD are sometimes considered a very mild end of the autism spectrum.) I had one parent of an Asperger's child tell me she felt that her son received the most improvement from neurofeedback. There is enough evidence that most, but not all, of Asperger children and adults would benefit. For autism, further research needs to be done before neurofeedback can be considered a premier form of therapy, although there is anecdotal evidence that some autistic children have done well with it.
Neurofeedback is not a quick fix. Dr. Lawrence Hirshberg of The NeuroDevelopment Center in Rhode Island, recommends ten to twenty sessions before improvement is seen. In my experience, forty sessions are more reasonable for autism, and the changes are still subtle. Mary also feels that the changes don't last without regular visits. Further research is needed to determine exactly what neurofeedback can and cannot do.
Was the therapy worthwhile? Yes, because it is cutting edge and parents need to be willing to participate in new therapies. So far neurofeedback is a promising therapy that has not yet matured for autism, but I feel it will in time be very promising.
For more information you can contact Dr. Barbara Scolnick at Neurofeedback Group Inc., 11 Irvington St., Waban, MA 02468, 617-964-1807 or Dr. Lawrence Hirshberg at the NeuroDevelpment Center, in Rhode Island at firstname.lastname@example.org
We found a new tool for children who need a picture system and haven't responded well to Mayor-Johnson.
elliecards™ are a complete set of picture cards intended as an augmentative communication system for young children with special needs. Designed to be used for children with autism, speech disorders, and various learning disabilities, elliecards™ are an invaluable learning tool for parents, therapists and educators.
Created by parents who had little success using other picture card systems on the market, this product uses photos that are realistic to everyday life, come laminated and completely assembled in an easy-to-use binder.
The Early Learning Images product includes a master binder containing 192 separate photos of items - known as elliecards™- commonly used by young children and therapists. Each photo is laminated and affixed to the pages of the binder with hook and loop fasteners (commonly called Velcro®). The binder is organized into categories by plastic color-coded pages. The complete set also includes a "choice board" where a smaller number of the images can be easily mounted and interchanged for travel or training exercises. This highly organized system makes it an easy process for anyone who is familiar with how to exchange images properly, including parents, speech pathologists, occupational therapists, behavioral tutors and physical therapists to name a few, to use this learning tool.
The set of 192 elliecards™ contains a variety of foods, snack reinforcers and toys commonly used by young children and therapists. There are also cards indicating places such as potty, bath and outside as well as a selection of colors.
Each elliecards™ is labeled with the name of the item in the photo. This is done for two reasons. When an exchange is made, all those implementing the elliecards™ can consistently emphasize the same word to the child. This repetition of words aids in language development.
Secondly, as the child sees the elliecards™ over and over, it can be beneficial for that child to also view the letter characters and possibly aid in sight-reading as he or she develops.
Early Learning Images also offers the option of a custom package in the event you require specific pictures not supplied in the original set of elliecards™ . These can be tailored to the specific needs of a child, including specially requested items and photographs of a child's specific home and/or school environment. Please call for more information on your specific interests.
Complete Package: $239 introductory offer
Comes completely assembled and ready to use. Includes binder, 192 laminated images mounted onto 16 color-coded and categorized pages and choice board
Visit their website at www.elliecards.com
By Anke Kriske
You might have caught an article on sensory learning in the Autism/Asperger's Digest issue of March-April 2002. Sensory-Learning was created by Mary Bolles to help her own son and she now has a center in Boulder, Colorado. At three, Jason didn't want to be held, couldn't talk, had poor coordination, and a volatile temper. This method so helped Tracey Hutchinson's son that she opened her own Sensory Learning Center in Danvers.
This program offers help to a variety of disabilities, ranging from autism and acquired brain injury to dyslexia and stroke. In the case of Ms. Hutchinson, her son has tuberous sclerosis, which can cause autistic symptoms in some cases. Her son, Ben, participated in the Sensory Learning program during the holidays in 2003. "We didn't see much in the first thirty days. Six months later we could say this is a different child," Ms. Hutchinson says. Sensory Learning is a thirty-day program. It uses light, sound, and motion simultaneously to stimulate the visual, vestibular, and auditory systems, forcing them to work together more efficiently because they become more organized. The idea is to challenge the system and not allow it to shut down, forcing a reorganization.
I used my son, Derek, as a guinea pig, and let him try it. At fifteen, Derek is an independent teenager, and he has no interest in humoring mom. He laid on what to him was simply a large bed. He wasn't concerned when it started to move up and down and enjoyed the light show and the music in his headphones. Sensory input is controlled by computer--this is definitely a high tech approach to autism-- but since it is noninvasive, he didn't have any problems with it.
He visibly relaxed during the ride, at least until he started to get bored. Derek is usually bored quickly with any therapy. "All done" is one of his favorite expression, but he had no problems lying still for about half an hour-a record for him. The program is done in the dark, so not all children take to it as easily as Derek did.
I spoke with Mary Bolles when she visited Massachusetts. Ms. Bolles feels that there is a glitch in sensory processing that throws off development. The stream of sensory consciousness is messy, and when it comes to pulling it all together, children with autism can't do it. As a consequence, they can't relate to the environment in a neural-typical way. With therapy, "They start to connect. They start to become present."
She's worked with all age ranges, from as young as two years to as old as ninety-one, a man who had had a stroke. These days most of the kids she sees have autism. The second largest category is brain injury.
One of the benefits of this therapy is that it helps with anxiety. "Change the sensory, and you change their world, and that changes their behavior," she says. Some of the children who have gone through her program has done so much better that they have gotten off medication. Her own son, Jason, is doing very well. He now has a master's degree.
The program is intensive, requiring twelve days of visits to the office followed by eighteen consecutive days of work at home. The program is expensive. The total fee is $3,500, although insurance may reimburse a portion of the coast.
To learn more about the program, visit the website:
danvers.sensorylearning.com or call Ms. Hutchinson at 978-762-4400.
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