An
Open Letter to Our President P-Noy, Senators, Congressmen and Mayor
Bobby Eusebio;
I
am a Father of a beautiful 9 year old girl with Angelman Syndrome. We
live in a country with meager means and ways to help these children
with special needs. The only thing our government or municipality can
provide is a School for Children with Special Needs, but these
children also need therapy which is quite expensive and more
important for them. Often times I feel invisible. I feel like I
cannot do enough to get my child what he needs in school or therapy.
These therapies don't come cheap, the cheapest is 500Php per session,
and must be done daily multiply that by 22 weekdays and that is
11,000, then multiply by 12 months and how much is it? 132,000Php a
year. Where or when do Our Government come in? Is spending much more
to the guaranteed voters much worth it? There are children who need
therapy much more to take care of themselves, how many children from
this special school will be able to work? How many companies do you
think would hire them? The following are the therapies needed by
these children with Special Needs.
Occupational
Therapy
is
a discipline that aims to promote health by enabling people to
perform meaningful and purposeful activities. Occupational therapists
work with individuals who suffer from a mentally, physically,
developmentally, and/or emotionally disabling condition by utilizing
treatments that develop, recover, or maintain clients' activities of
daily living. The therapist helps clients not only to improve their
basic motor functions and reasoning abilities, but also to compensate
for permanent loss of function. The goal of occupational therapy is
to help clients have independent, productive, and satisfying lives.
Physical
Therapy is
concerned with identifying and maximizing quality of life and
movement potential within the spheres of promotion, prevention,
diagnosis, treatment/intervention and rehabilitation. This
encompasses physical, psychological, emotional, and social well
being.
Communication
therapy.
Although
people with Angelman syndrome usually don't develop verbal language
beyond simple sentences, communication therapy can be helpful.
Nonverbal language skills may be developed through sign language and
picture communication.
Behavior
therapy can
help children with Angelman syndrome overcome hyperactivity and a
short attention span, which can aid in developmental progress.
Although the level of development people with Angelman syndrome can
achieve varies widely, many are outgoing and are able to build
relationships with friends and family.
And
there is :
Anti-seizure
medication.Medication
may be necessary to control seizures caused by Angelman syndrome.
This medication is not expensive, but is very hard to get a
prescription, because it is classified as a dangerous drug and needs
a special kind of prescription that you have to pay to get a hold of.
I
am just like you, but I am different. I am the parent of a Gifted
child. My child’s needs are different than you child’s needs, but
they are the needs of an individual child and they are not being met.
So you see, we have something in common after all. My child has
special needs too, and her needs are being ignored by the Government.
My child is treated as a number, not a little girl deserving of a
quality education and therapy tailored to her needs.
Yesterday,
I recieved an email from (F.A.S.T.) The
Foundation for Angelman Syndrome Therapeutics
that they a about to start clinical trials for the drug to cure
Angelman Sydrome. But is only available for people residing in the
United States, Only 28 are needed with a budget of only 1,000USD per
child.
I
included the link at the end of this message.Screening will be
announced soon. Hoping our government can help in finding ways to
help these children here too, Instead of focusing only to projects
that would make them look good, why not try helping these children.
Or how about controlling the rates or prices of therapy, medication,
proffesional fees or subsidizing these expenses.
Talking
about it is no longer enough. United we stand — Divided we fall. We
need to make a change for our children. Children who have special
needs which, though sometimes vastly different than those of an
autistic/adhd/as child, need to be met so they can thrive. I am
asking the special needs community and our Government, and even those
of you without any special needs children, to add the Gifted
community to your list of causes worth fighting for. Please add your
voice to ours so we may be heard. Add our children to the list of
children you fight for everyday, so they might too excel
academically, socially and emotionally.
Jeffrey
John Imutan
Jiann Imutan
"I am just like you, but I am different"
(typical) facial appearance, and a happy mood with sudden bursts of laughter and epilepsy. Many children also have a fascination for water, and usually running water.The condition is due to an abnormality on chromosome 15. The condition is usually diagnosed between four and 10 years of age, but sometimes earlier.