THE FORWARD - SPRING 2005
Feature Article
Living With Autism
My nephew David has autism. He was diagnosed at the age of
three. Around the age of two we noticed that he seemed to have
some language delays.He was not saying any two word phrases.
People told us not to worry because boys speak at slower pace
than girls. However by two and a half it was apparent that something
was amiss because his language skills were not progressing, in fact
he was regressing. Not only was there a lack of new words but he
stopped saying the words that he already knew.
This was very perplexing to the whole family. His parents took him
to the doctor for a hearing test and were told that he was deaf in
one ear. However, shortly after that we were told his hearing was
fine. After further testing and evaluation it was discovered that he
has autism. His parents and the rest our family were saddened by
this diagnosis. Although some of us had heard of autism we were
not sure what this meant for David.
David’s parents were able to get him into an early prevention
program. He attended The Children’s Specialized Hospital in
Hamilton, NJ. A speech therapist taught him sign language so
he would be able to communicate his needs. He participated in
occupational therapy to help develop his fine motor skills. This
past September he was enrolled in the Joseph Cappello School
for Autistic Children.
Today he is a happy little four year old boy who loves to chatter
almost constantly. He still attends school and he also continues
to go to therapy at least twice a week.
I had the opportunity to sit down with David’s parents to talk about
their experience raising a child with autism. When they learned of
the diagnosis, his mom said that she was sad and his dad felt
unsure as to what could be done to help their son. He was
uncertain about the effects or seriousness of the condition.
They feel better about the diagnosis now because they have
more experience with autism.
I asked if they had heard of autism before David was diagnosed.
His father had but his mother had not. Neither of them felt they
did anything to cause the disability. Having their family near has
helped them tremendously, especially during their education on
how to live with David’s disability. Both of his parents are trying
to develop the best style for them to raise him. One parent feels
that he should be pushed to become as independent as possible
the other parent feels the need to be more protective. They both
want David to grow up to be independent, get a good education,
and to enjoy life. His mother wanted to stress the fact that David
is here for a reason and despite his disability life can be good.
Nicole Davis
__________________________________________________________________
COMMENT
Autism and Controversy Go Hand-In-Hand
My comment in this issue is more one big question then a
comment since that seems to be the atmosphere in the
world of Autism. Over the past few weeks, I have been
trying to improve my knowledge on Autism; it is quite
overwhelming to say the least.
What causes Autism? Is it environmental, genetic, some
combination or something else? So many experts, so many
opinions, so many viewpoints.
How about diagnosing Autism. Is it 1 person out of 300, 1 out
of 170, who really knows? Has the number of individuals
diagnosed with Autism increased or is it improved diagnosis
or a larger window of understanding?
As someone with little experience or knowledge of Autism,
I ask if there has been a meeting of the minds in this nation
or even worldwide of the people with the most experience
and knowledge?
I am asking many questions, which seems to be what is out
there right now on this very important issue facing many
individuals and families.
With the recent added attention being given to Autism via
TV, News Magazines, Newspapers and Radio, lets hope
some concrete answers start to surface that will help so
many people.
Scott Elliott
___________________________________________________________________
LEGISLATIVE / ADVOCACY
HUD has just released Programs of HUD 2005:
Major Mortgage, Grant, Assistance, and Regulatory
Programs present a concise overview of the
Department's programs. These programs are the
means by which the Department offers families and
individuals opportunities to achieve self-sufficiency;
supports communities nationwide as they generate
renewal; and strives to ensure equal housing
opportunity to all Americans regardless of race, color,
religion, sex, national origin, age, disability, or familial status.
Programs of HUD 2005: Major Mortgage, Grant, Assistance,
and Regulatory Programs is available as free download from
HUD USER at [ http://www.
huduser.org/whatsnew/ProgramsHUD05.pdf ]http:
//www.huduser.org/whatsnew/ProgramsHUD05.pdf
Take Action:
Don’t wait until the next recess to express your strong
opposition to proposals to impose caps on domestic
discretionary expenditures, as well as to making dramatic
cuts in Medicaid and Housing funding!
Since the House and Senate may vote on initial budget
resolutions before the next recess, it is essential to FAX
or call your elected officials to express your views NOW!
let us know how your elected officials react.
Thumbs Up/ Thumbs Down
thumbsup to the helpful staff of McDonalds at 101 Nassau
Park Blvd., Princeton, NJ for their assistance with
a customer with a disability.
thumbsup to the new Hunterdon County Workforce
Learning Link located at Educational Services
Commission. It provides services, at no cost, to
everyone. It provides help for people to become
more employable. It is accessible by the LINK.
For info call Marie Kisch, at 908-788-1360.
thumbsup to Bethel Lutheran Church on Johnston Ave. in
Hamilton recently installed a lift so church
members have access to the main floor of the
sanctuary and the lower floor where community
events are held.
thumbsup to Mercer County Executive, Brian Hughes for
his positive response to PCIL’s letter of concern
for the deaf and hard of hearing population in the
event of an emergency. This group is included in
Emergency Preparedness plan for Mercer County.
thumbsdown to Dollar & Up, 410 Lalor Plaza, Trenton, NJ
for the overcrowded aisles, full of boxes and
counter that are not accessible.
Mind/Body
Heart Protection the Colorful Way
Follow the rainbow to get all the nutrients you need. Ever feel
overwhelmed from trying to eat enough fruits and vegetables?
Stop thinking so hard! You can make healthy eating automatic
if you follow the Rainbow Plan.
On this plan, you eat a fruit or vegetable from each of eight
color groups every day. By doing so, you'll automatically
consume the gamut of phytonutrients that boost heart health,
says David Heber, MD, PhD, author of What Color Is Your Diet?
and director of the UCLA Center for Human Nutrition.
The Rainbow Diet works because many of the compounds that
fight disease in your body are also pigments that give color to
fruits and vegetables. The brightest fruits and veggies pack
the most disease-fighting nutrients. Select one food from each
color below and an extra from the orange group to hit your
recommended nine a day.
Red:Tomatoes, watermelon, pink grapefruit, guava- Lycopene
Red/Purple: Grapes, grape juice, apples, cranberries, blackberries,
strawberries, prunes - Flavanoids
Orange: Sweet potatoes, mangoes, carrots, apricots, cantaloupe,
pumpkin - Alpha- and Beta-carotene
Orange/Yellow: Oranges, tangerines, peaches, papaya, nectarines -
Cryptoxanthin
Yellow/Green: Spinach, yellow corn, peas, avocado, honeydew -
Lutein & zeaxanthin
Green: Brussels sprouts, broccoli - Sulforaphane
White/Green: Garlic, onions, endive, chives - Organosulfides & flavonoids
Blue/Purple: Blueberries - Anthocyanin & antioxidants
In The Know
Infomercial Scams
If it sounds too good to be true, chances are it is. There are many legitimate
products that are sold on television. There are also deals whose only
purpose are to rip off unsuspecting consumers. Here are some of the ways they scam you:
1. Free Products- they'll ship you free products. All you have to pay for is
the shipping . Sometimes when you order "free" products from an infomercial,
you can be billed hundreds of dollars in shipping costs.
2. Bait and Switch- What you see is not what you get or what you wanted.
3. Refunds- Chances of getting a refund are nearly impossible.
This number will usually lead to a dead phone line.
4. Customer Service- customer service is impossible to contact via phone
or e-mail.
5. Item Nonshipment- You never receive an item. You call to check the
status and they may swear that they sent the product. How can you prove
that they didn't send the product? It can be extremely difficult to prove
in court, they can easily say that there was a mix up or communication
error and that it’ll be fixed.
6. Used or Refurbished Products - You buy a product only to find that the
gadget you paid full price for was previously opened or even used. If this
happens, getting a new product or a refund is extremely difficult.
7. Product Returns- you bought product and didn't like it, but is hard to get
through to customer service. By the time you do your 30-day money back
guarantee is up.
How to Avoid Rip-offs
1. Do research.
2. Avoid using the 1-800 number or website mentioned on an infomercial.
3. Use a credit card, not a voided check or direct withdrawal from your
checking account.
DID YOU KNOW
? ? ?
What is autism?
Autism is a brain disorder that affects a person’s ability to
communicate, to reason, and to interact with others. It is a
spectrum disorder that affects individuals differently and to
varying degrees of severity, and it is often found in
combination with other disabilities.
Children with autism and other autism spectrum disorders
typically display a range of identifiable signs to watch for.
By being aware of these signs, parents can help spot the
disorder at an earlier age, which greatly improves a child’s
overall prognosis.
What are the signs of autism?
Spins objects; sustained odd play
Aloof manner; difficulty mixing with others
Repetitive movements (hand-flapping, rocking)
Laughs, cries, shows distress for no clear reason
Little or no eye contact; may not want cuddling
Uneven gross/fine motor skills (may not kick a ball but can stack blocks)
Severe language deficits
Difficulty expressing needs: gestures or points instead of speaking
Not responsive to verbal cues: acts as if deaf
Echolalia (repeats words instead of responding)
Insists on sameness; inflexible about routines
Inappropriate attachment to objects
Noticeable physical over- or- under-activity
Over-or- under-sensitivity to pain, light, sounds
Autism typically appears by age 3, though diagnosis
and intervention can and should begin earlier. Diagnosis
is based on observation of the person’s communication,
behavior, and developmental levels by a team of
professionals. There are no medical tests for autism.
However many of the behaviors of autism are shared by
other disorders, so medical tests may be done to rule out
other possible disabilities.
Taken from the Autism Society of America - What is Autism?
Feedback/Announcements
Transition Updates
CG’s Risk Taking
I met with a young man to initially discuss self-
advocacy. He is 15 and needs assistive technology
in school in order to be a successful student.
His equipment arrived at the beginning of this school
year; however none of the staff knew how to use it.
CG and I brainstormed what could be done in order to
facilitate the staff being trained. We agreed that I
could help by providing CG with some phone numbers
of agencies who could provide training to the school staff.
He was willing to make the calls, but then decided to
share the information with his case manager of the child
study team. He did, they followed up, and the staff now
understands how to “program” and utilize the equipment
as necessary. CG has full access to his equipment in order
to fulfill his course requirements.
When CG left that day, he told his mom that I had made
him feel very grown up. He and I began meeting again
once a week and each week he leaves with a responsibility
to complete before we get together again.
CG finds risk taking hard work, but when we discuss his
weekly “challenge” we are in full agreement and he feels
comfortable with the responsibility.
Lucinda Gabri
Independent Living Transition Specialist - Hunterdon County
A Student’s View: A Taste of Success
Tommy Ficarro has always found reading difficult.
Reading would be an exhausting effort causing his
eyes to burn and tire easily. Homework became a
chore and he would find himself procrastinating until
the very last minute.
Then one day, Tommy found some hope. His sister,
who works in law, has a client who used special glasses
that helped her read. With some investigation, his sister
discovered that not only did she use the glasses, but
she was open to work with Tommy to see if these special
lenses would help him as well. During this preliminary
testing Tommy noticed that these colored lenses were in
fact making reading easier. Immediately, with the right
color, he noticed that the letters were more focused and
not jumping around.
Now that this was an option, Tommy and his father made
a visit to the Irlen Clinic in New York to obtain further
testing. During his assessment, he was provided
numerous colored lenses to try out. Once he discovered
the right color that worked best, then the right shade of
color was determined.
The next step for Tommy was to choose a pair of glasses
and plain plastic lenses, the Irlen Clinic would then tint the
lenses and Tommy would be ready to go. Now that he has
these lenses, he says he’s more into reading. Tommy
explains that he doesn’t dread reading as much and feels
that his new success has made him more confident.
Homework is not so much a chore and he has surprised
himself as to how quickly he now can complete his
assignments.
Renee Pfaff
Independent Living Transition Specialist Mercer County
Tips for individuals who have dyslexia
(a specific learning disability that affects one’s ability to read):
Halogen lighting is better to read with rather than fluorescent lighting.
Wearing a cap with a wide brim can help reflect glare from fluorescent lighting.
It is best to use colored paper when reading or writing rather than black on white.
Since reading can be difficult, books on tape could be helpful.
For more information contact:Recording for the Blind and Dyslexic
20 Roszel Rd. Princeton, NJ 08540
1-800-221-4792 or
NJ Library for the Blind and Handicapped
2300 Stuyvesant Ave. Trenton, NJ 08618
1-800-792-8322.
For more information on colored lenses
please contact: Irlen Clinic Perceptual Diagnostic
444 Stratton Road
New Rochelle, New York 10804
(212) 397-9620
PCIL PICKS
Reality Check - Ray
As a person with a disability often I find that many able bodied people
believe that all of us are sweet, kind, gentle people who are to be
admired. They believe that we can do no wrong. This could not be
farther from the truth. The movie Ray drives home this point.
Ray is the life story of Ray Charles. When many of us think about Ray
Charles we think of a man who was a musical genius despite his
disability. We do not associate him with things such as drug use and
adultery.
Ray Charles was a man who had to deal with many severe obstacles,
such as drug use, his mother’s death, prejudices, and people
taking advantage of him because of his disability as well as many
other things that we are not aware of. Because of all that he was a very
unloving person. As time went on he began to change.
So please remember that the next time you come across someone
with a disability, seen or unseen don’t make a judgment because
things are never what they seem.
Nicole L. Davis
| 
