Community News

Autism: “Not Forgotten:
The Secret of Autism in Ukraine”

by Tom Saxon
  My first encounter with a child with Autism was in 1985. For one year, I took care of a five year old boy for one hour a week, allowing his parents a short respite from his daily care.  I had no experience.  He was on the spectrum, non-verbal, continually stemming (the beginning of many words I would have to learn), and somewhat aggressive.  I had no idea what I was doing, but fell in love with him.  That began my journey with Autism.  I am not a specialist, but an advocate for children and parents of Autism both here and in the post-Soviet country of Ukraine.

For the past twelve years, I have been traveling with teams to Odessa, Ukraine, the last four years of which have been to work in a school dedicated to teaching children with Autism.  Our time in Ukraine has primarily been spent helping Ukrainian teachers who have little or no training and only a modicum of success with these precious children with Autism.  Our other focus has been with the parents who are full of love yet ill-equipped to relate to and help their children.  Fear, shame, exhaustion and hopelessness permeate each consultation with parents.  These parents love their uncommunicative, chaotic and incomprehensible children, though questions regarding the condition are the same for any parent in the world: Why? What did we do to cause this? Will my child get better? Is there a cure?  Children with Autism in Ukraine live secretively and alone.  Eastern Europe keeps disabilities, especially Autism, hidden from view in order to hide its cultural and individual shame.
Our thanks to Loredana Lembo for translating the Physician Handbook and Poster into Italian. Here is her commentary:

My name is Loredana Lembo, and for nearly two decades I have been active in the field of special needs.  My professional activity started with children with cerebral palsy, and with adults with degenerative diseases. This work had a focus on the communication, behavior, and the environment of people with learning difficulties, and served as a prelude to my current practice in the field of Autism Spectrum and related disorders.

Our thanks to Dr. Abdulaziz A. Alruwaishid, MD, Pediatric Neurologist, Riyadh, Saudi Arabia, King Saud Medical City, Ministry of Health, who translated the Physician Handbook into Arabic.  Here is his story:

I am pediatric neurologist working in SAUDI ARABIA and dealing with children with autism and other developmental delayed children.

The main reason to this Arabic translation is to increase the awareness of autism features between primary care physician and pediatrician and to make diagnosis of autism easier with simple illustrated drawings. The main concern is the families who come to clinics for consultation because their child was suspected to have autism and most of the information received by the families are taken from the media.
I hope that this Arabic translation of “Physician Handbook for Autism” will be helpful also for families who are concerned that their child is suspected to have autism.My name is Leonice Weber Pfohe, I live in Germany and have a son (10) in the autism spectrum disorder. The diagnosis has taken almost three years and then I brought the world together. What will become of what do I do, where can I get help.

Wandering Databases

Penobscot County
Penobscot County Launches Database Designed to Help Officers Find Wanderers.
Click here to view the video and article 3/16/2015.

Waldo County

The Police Department in Belfast Maine and HANS, Help Autism Now Society, are pleased to announce a newly created public service that serves as a safety net for some of the most vulnerable individuals in our community, including those with Autism and Alzheimer’s. These individuals are prone to wander or bolt and may not know, or may not be able to communicate, that they are in trouble. This new database could help save the lives of these individuals if they do get lost.

The idea for the program came about as a result of a conversation between Belfast Police Chief McFadden and Linda Lee, a parent of a teen with autism and Executive Director of the non-profit HANS.  Lee had taken a New York Times’ article to discuss with the Police Chief, regarding the federal government funding tracking devices for children with autism. The article highlighted the tragic case of a 14-year-old non-verbal boy with autism in New York, who had left his school and despite months of city wide searching was not found until his body was recovered from the banks of the East river.

Knox County
Residents of Knox County can now register
for the Wandering Database through
their local Police Departments in Camden, Rockland, Rockport, and Thomaston
and through the Knox County Sheriff's office. Completed forms and a recent photo
can be mailed or taken to your local Police
or Sheriff's office.
Waterville County
Artwork by "Tiger" Lee
Our thanks to Leonice Weber Pfohe, who translated the Physician Handbook into German. Here is her story:

My name is Leonice Weber Pfohe, I live in Germany and have a son (10) in the autism spectrum disorder. The diagnosis has taken almost three years and then I brought the world together. What will become of what do I do, where can I get help.
Much of the information did not exist and I started to read anything about autism, compare to other languages ​​with that what I heard from doctors, I could not understand that my child gets a judgment for his whole life and the prognosis would not pleasing.
After a year I started a support group in our closer and now we regularly visit more than 40 families in the region. Today, after a lot of work attended my son's high school and has a lot of joy in life, lived very happily with his disability, has many plans for the future and we will certainly support very much.
When I found out about this stuff, I thought, this would be a great, information-rich material for "my" parents and moved a lot of friends, relatives and acquaintances to translate this.  I am very pleased to have found this site and so many other parents, teachers, educators and people who work with autistic people a little light and bring relief to.

Our thanks to Nesrin Bilkin, Director of Beyaz Koza, who translated the Physician Handbook into Turkish. Click to view her organization.
Debbie Hema
Debbie Hema is a certified child life specialist for intermountain healthcare and has a Master's degree in Marriage, Family, and Human Development from Brigham Young University.  Throughout her career, she has been especially interested in how good natured humor and creativity can help children be resilient during the most stressful times of life.   A native of San Diego, California, Debbie loves the sunshine, the ocean, and learning about different cultures.  She is also the parent of a child with high functioning autism.  One of her favorite phrases is "Life doesn't have to be perfect to be wonderful!

  Our thanks to Akbar Baroug for translating the Physician Handbook and Poster into Persian. Here is his story:  
My name is Akbar Zahedi Baroug. I have a brother with infantile paralysis. If we had vaccinated plane several years ago, maybe he would have predestination. Now he is thirty five, without production, acceptable education, wife or clear future. At this time we confront with autism condition that cannot use vaccination plan, but we can early diagnose it and start to treatment appropriately.

I don’t think like “Descartes” who said, “Cogito, ergo, sum”, I am working and learning therefore I Exist.

Now, I work with children with autism and I am familiar with all approach approximately and apply to compose them in play. If they had early diagnosis maybe they would have better opportunity in their life. I think it is necessary that one therapist who graduate in rehabilitation fields should  study new knowledge, In fact, therapists should have a sufficient knowledge of brain dysfunction so that be able to plan a more effective treatment for that in a better way.
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