Sunday, November 18, 2007Another great article to be shared. It shows to us, how much education is important in every aspect, in every person. No child, normal or innate with autism, should be left out from getting an education. [Thanks to Ms. Angelique's mother for sharing this.]
'My right hand is my life'
January 28, 2007
By CARLA OCCASO Staff Writer
Maleia Darling shocked her family just over a year ago by communicating volumes of bright, articulate thoughts although she has never spoken a sentence. Until then they didn't know what her favorite color was, let alone what her complex thoughts and feelings about her experiences might be.
"My name is Maleia and I am eleven years old," she wrote with a typewriter-like device on Oct. 2 in a piece titled "My Life With Autism." "I feel like other kids my age but my world is very different. I am forced to live in the world of autism. To me there is a gospel different from yours. Autism affects me both academically and personally."Before Maleia (her name is pronounced MAH-LEE-AH) learned to type on a keyboard about a year and a half ago, her parents, Todd and Keri Darling of Barre, said they had no idea what went on in their daughter's head. They picked out what they thought she would like or need by trying to guess the desires of their sometimes expressionless child with big beautiful eyes and short blonde hair. Once she began writing, her inner world came alive to them.
"We were blown away," said Todd Darling, who is a wholesale flower distributor. "We didn't know she knew what she knew (and) for me, it gave me a stronger will to help her get out of the world she was in."
Now, Maleia tells her parents what she thinks, feels, likes and dislikes. Her favorite colors are pink and yellow. She likes volcanoes. She likes riding on snowmobiles, roller coasters and other amusement park thrill rides.
"It's made us closer because we know how she feels," Keri Darling said. "Before, I made all the decisions. It's helped to get to know her more."
Autism is classified by the World Health Organization as a neurodevelopmental disorder. The condition affects a person's ability to communicate, understand spoken language and interact socially. Symptoms usually appear in the first three years and continue throughout life.
Maleia's medical problems started at nine months when she had a grand mal seizure. Keri Darling called emergency rescue and felt "helpless" and "clueless" as her tiny daughter was rushed to Dartmouth-Hitchcock Medical Center in Lebanon, N.H.
Doctors diagnosed Maleia with autism at age 3. Her parents cared for her as she endured seizures for days in a row, every hour on the hour, according to Keri Darling. The early years were "rough," Todd recalls. As Maleia matured, the duration and frequency of the seizures decreased, and though she had seizures as recently as last summer, the episodes have been regulated with medication.
The Darlings credit their own parents, extended family, the Barre Town School and the community for supporting them along the way.
Keri Darling, who works as a victim's advocate for the deaf, said the Barre Town school has been "awesome." The school board promised the Darlings the school would help Maleia with whatever she needed when she enrolled in kindergarten. Now in fifth grade, she works with a one-on-one aide, often in a room by herself, because it is difficult for her to be with groups of people.
Todd Darling said it was impossible to tell how much Maleia was taking in until Harvey Lavoy of the Barre Town School introduced her to "facilitated communication" last year.
In her case, someone holds her wrist or elbow in place so that she can access the keyboard of a computer or other writing device with her fingers. Maleia hits the keys on her own, Todd Darling says. Her writing is not edited by her parents or her teachers.
Maleia is reading and writing at a fifth grade level, and she has produced pages of sensitive, intelligent essays.
"Words, thoughts, hoards (sic) of emotions spin a riot in my head," Maleia wrote. "How can I speak or know drops of thoughts when there's an ocean in my head? … How can I fit into a world forcing feelings I don't have?"
Her writing reveals a thoughtful person full of hopes and joys, even though on the outside she appears to be cut off from others.
The Darlings had no idea how their dedication touched their daughter until recently because Maleia only utters occasional single words to indicate what she wants, her father says. And while she can say many words, she's not able to string them together verbally in sentences, he says.
Maleia recently wrote, "My mom is pretty and smart. She loves me the way I am. She loves me as much as she loves (brother) Jake. I'm surprised that she loves me when I'm a devil. I love her, too, and I'm so really happy that she's my mom."
Maleia also wrote a letter called "My Special Place" to her grandmother: "Roots of love, rays of happiness, torch of hope, these are the things that touch me when I am at Mimi's house. Mimi's house is truly peaceful … She's always a fountain of love for me and filled with real hope that I am smart and really lovely." Kay Lomberti, Maleia's grandmother, said she cried when she read this letter.
Her parents are amazed how simple communication devices, such as portable electronic keyboards, have opened Maleia's world.
Knowing her preferences has allowed the Darlings to provide an enriching environment at home. Her bedroom has become a soothing retreat decorated in her favorite colors with soft lights. On a recent Sunday afternoon Bob Marley's rhythmically lilting reggae music filled the air as Maleia swung on a swing in her bedroom. Todd Darling explained Maleia puts on music and swings every day when she gets home from school to unwind from the daily stress. Autistic children need certain kinds of physical stimuli other children don't, according to Keri Darling. In the summer, she swims in their backyard pool.
Maleia's seemingly miraculous discovery of the written word has inspired her uncle, Randy Lomberti, to join with Sue LaGue of Berlin, a grandmother of an autistic child, to raise money help families like the Darlings purchase equipment for their loved ones."We wanted to do something to raise awareness," Lomberti said. "It is a disease that gets one in every 166 children."
Lomberti and LaGue formed the Autism Puzzle Foundation to serve people statewide in need of toys or devices to enrich their lives. They held a fund-raiser at the Barre Elks Club last April, which raised nearly $21,000. Of that, $10,000 was given to Cure Autism Now (www. cureautismnow.org), a research organization that is offering to pay for devices that can people with autism.
Families throughout Vermont are invited to contact the Vermont Assistive Technology program about the Autism Puzzle Foundation gifts of up to $500 for therapy swings, facilitated communication equipment and other alternative communication devices. Funds are also available for toys that help with sensory integration, fine motor skills, gross motor skills, tactile skills and cognition skills.
"We're trying to help Vermonters statewide," Lomberti said. "There's a huge need."
And now, thanks to help from family, teachers and others, Maleia can speak for herself about how important these devices are to those with autism.
"I want to tell people how much my life has changed with typing," Maleia wrote. "Typing is my voice and my right hand is my life. Before typing I had little way to tell people my needs and feelings."
What is Autism?
Autism is a develepmental disorder that impairs the person's ability to communicate and interact socially with the other people.
People with autism have great difficulty in learning or intellectual disabillities.
They also have difficulty in understanding the world around them, and thus would rather keep to themselves or to a rigid "safer" routine.
People with autismhave a wide variety of symptoms, IQ level and behavioural problems.
A more common term used to describe this disability is Autism Spectrum Disorder ( ASD ).
Current global statistics state that up to a staggering 1 : 167 persons suffer from ASD!
Strangely, 80% of Austistic are males.
What causes autism or ASD ?
ASD is caused by dysfunction of the brain in receiving, processing, coordinating and responding to sensory information, a process which most healthy people carry out automatically at an efficient rate.
Research shows that the brain of an ASD person processes information in a perculiar manner and often at a lower rate.
Hence, their response to sight, touch, sound, movement and balance can be very different fron other normal and healthy people.
What causes such a brain dysfunction remains unclear, but the factor suggested include genetic, biochemical and metabolic abnormalities, enviromental pollution and even certain viral infections.
Autism is a neuro-developmental disorder affecting so many around the world. Autism is not mental illness, these children and adults think differently. Albert Einstein, they say was autistic. How many in the audience know that there are 38,000
autistic people in Sri Lanka?
So we as entertainers, urge you all to ‘speak up for those who cannot speak up for themselves
Lets spread awareness of autism, particularly when numbers of autistic children are rising and we urge our government to also provide public services – who knows we may even produce Albert Einsteins if we provide education, health, specialist speech therapy for autistic children in our lovely island....
Desmond de Silva
MISSION STATEMENT :
To equip Autistic children with the required skills to lead meaningful and independent lives within Sandakan society and to raise awareness among the public on autism.
+To expose the school community and the general public to autism in our effort to raise awareness via the creation of a website, so that the younger generation and the public may be more sensitive to the needs of these strata society.
+To help the autistic children, parents, teachers and the centre obtain a better understanding about Autism by providing any resources at the website on the subject.
+To give funds to the centre, so the teachers can get proper training in the future.
+To get the school community to contribute in helping the autistic children, through voluntary work such as charity work (cleaning and mural painting) and activity (mini concert) to raise fund for the centre.
+To change mindsets of every person in accepting autistic people in their community, so that they too feel loved and accepted as a contributing part of the society.
+To raise funds to improve the facilities of the centre.
+To create an awareness of the team members and the school community in general, of how much we should appreciate our lives and be grateful for it.
+To bring light to the children who are developmentaly delayed by having fun with them through activities.
A Cent A Day.
Date : From 18.09.07 to 12.10.07
Venue : Donation jars will be placed at school canteens and teachers' staffrooms.
Objectives : This activity gives a chance for the school communities to contribute and donate even just a cent a day! All collection and donation will be donated to Sabah Cheshire Early Intervention Centre in October.
Date : 06.10.07
Venue : Sabah Chesire Early Intervention Centre
Objectives : Along with Sung Siew community, this will be a whole day work on cleaning, planting and mural painting on the plain walls. This is to prepare the centre to children learning friendly.
Date : 21.10.07
Venue : Sabah Chesire Early Intervention Centre
Objectives : A set of games, aiming for these children. With these games involving the team members, the teachers of the centre, the parents and the children, we hope the children will have fun and know that they are accepted among the normal people too. This activity will be held during the Family Day, which will be officiated by YB Au Kam Wah.
Mini Charity Concert.
Date : 27.10.07
Venue : School Stage, School Grandstand
Objectives : A mini concert, allowing different group of students, consisting of uniform bodies, clubs and individuals, performing dance, singing and even band performance. This is to realize their talents and be thankful for it. So they get the chances to entertain, be entertained and the same time, do charity. All donation will be collected and used for educational aids, materials and toys for the centre.
H.O.P.E. team believes that these children need love, care and attention. Thus, the team is going to continue serving the centre in a long run. Starting with the adoption programme, festive celebrations and annual family day. This is a continuous effort and out of the team's willingness as we believe help doesn't come in short period of time, if one wants to see the outcome. We hope by then, we will grow with these children and see them becoming somebody too in the society.
Date : In November
Venue : Sabah Cheshire Home Early Intervention Centre
Objectives : Team members are able to adopt their brothers and sisters at the EIC and get to know them, by spending time with them and teach them through the guidance from the teachers in the centre. With this, the children learn to be accepted and loved. As for the team members, this will be an eye opener and awareness to learn more about the children, learning to be patient and appreciate of what God has given to them.
Date : 13.12.07 & 19.12.08 [Christmas]
Venue : Sabah Cheshire Home Early Intervention Centre
Objectives : H.O.P.E. team will arrange activities for Christmas celebration with the centre's committees. This celebration will involved all occupants of Sabah Cheshire Home, too!
Annual Family Day.
Date : The centre's anniversary
Venue : Sabah Cheshire Home Early Intervention Centre
Objectives : Since our successful family day, we intend to continue this activity in the future. It opens chances of good interaction among the communities.
...and many many more to come!
Team Name - H.O.P.E
Project Name - Let 'Em Shine, Too!
The 9 Sparkling Shiny Stars!
The H.O.P.E. team members
[ Email us at firstname.lastname@example.org ]
Ms. Michelle Tiew - Our Mentor from Maxis CyberlinQ
[Email at TMICHEL@maxis.com.my]
Ms. Yong Wye Yee - Our Mentor from Maxis CyberlinQ
[Email at WYYONG@maxis.com.my]
Ms.Latifah Yusof Embun - Teacher Advisor
[Email at email@example.com]
Crystal Leong Sukyi - Team Leader
[Email at firstname.lastname@example.org]
Olivia Hon - Secretary
Catherina Maria Wong - Graphic Designer
[Email at email@example.com ]
Low Gin Tung - Treasurer & Video Creator
[Email at firstname.lastname@example.org]
David Wong Yeong Yeow - Content Editor
[Email at email@example.com]
Stephanie Chen Mei Ying - Content Editor
[Email at firstname.lastname@example.org]
Dont remain anonymous and silent, speak up!
Let us listen to the voices.
H.O.P.E. Team would like to convey our gratitude and thanks to the following for helping, supporting and contributing in anyway possible in making this project a success. Thank You!!!
~ YB Au Kam Wah (ASDK) ADUN N.45 ELOPURA, the Chairman of Sabah Cheshire Home Early Intervention Centre.
~ Mr. Leong Kwok Cheong, SMK Sandakan Bestari's principal and the Treasurer of Sabah Cheshire Home Early Intervention Centre.
~ Sabah Cheshire Early Intervention Centre. The teachers [Ms. Meryhati, Ms. Nelly, Ms. Yati & Ms. Sin Yee], the committee members and the children!
~ Mdm. Florence, Sung Siew Primary School's headmistress and Ms. Jennifer from EIC.
~ The children's parents. Thank you for your co-operation & supports.
~ Mr. Lee Chin Hoi, our school principal.
~ Sung Siew Secondary School community! Sung Siew is the best! :)
~ Maxis CyberlinQ 2007.
~ Our Mentors, Ms. Michelle Tiew and Ms. Yong Wye Yee.
~ Ms. Yati, for joining us on Family Day.
~ Angelique and family, our dear friends in US. Thanks for supporting us all the way!
~ Mr. Lo, Mdm. Dayang, Ms. Yau & Mr. Patrick, for your feedbacks in our interviews.
~ Raymond Heng, our ex-chief website designer.
~ Mr. Ahmad Kamal and Mr. Wahidi Abdullah for accompanying us on the Charity Day.
~ Mr. Patrick Lim and Mdm. Chong Fui Ha, along with all performers & volunteers for the Mini Charity Concert.
~ Mdm. Tan Puah Eng, our 1st Senior Assistant, for allowing us to use your printer and computer.
~ Cynthia Chee, for helping us with the video!
~ Family, parents, friends, individuals and organizations that had come to support this project.
We appreciate it!!