I am compelled to write and say this after an interesting string
of comments in one of the Angelman groups on facebook:
It is important to not shut down any possibility for our children. We must not say they can’t or will
never. We must think and say, let’s try
this, let’s see what he CAN do.
Honestly, I have many days and nights of silent tears and disgusting
loud sobs being Scotty’s mom and wishing a better life for him and the worries
of when I am not here. However, I have
never fully accepted what ‘experts’ have said regarding angelman syndrome and
my son’s possible and actual abilities.
Why do we automatically label a nonverbal child as MR? Or unable to communicate? I have fought many years for a speech therapist
to hear me and believe me that Scotty is capable of learning a universal mode
of communication. Finally, a speech therapist saw what I already knew about my
son. Her words to me were: “There is such a light in Scotty, and I am
going to do everything in my power to make sure it shines”.
My son has
communicated since birth. Unfortunately I was the only one who understood each
sound, whimper, grimace, and cry. Each
sound and intonation meant and means something to Scotty. But I knew there will be a time that Scotty
is out in the world and will need to communicate his wants and needs without
momma interpreting.
Each and every child is capable of learning; this includes
COMMUNICATION. There are many forms of
universal modes of communication. We
have tried many of them. It takes trial
and error to see what will click with your child. But you must know this: your child is watching, listening, and taking
it all in and one day he/she will do the sign for “more” after 15 months of
modeling, hand over hand..or he will imitate the sounds he hears every day. I am tired of hearing or Del + he can’t do this.
Or other mutation forms of angelman syndrome are higher functioning. REALLY?
My son walks independently, feeds himself (messy but he does it), he
understands basic sign language and can do the signs as well..(he may choose
not to show you that he can..he is what we call self directed)..he says Momma,
C’mon Mom, Ellie, I love you, My momma,
I love my momma, Bubba,..i have heard him say Dada , nonna, papa, and even Oh Shit. I am not making this up, I am not exaggerating.
He is MORE ABLE THAN NOT ABLE.
He does these things
Not because I willed them to happen but because EACH CHILD IS CAPABLE OF
LEARNING AND COMMUNICATING. Expectations
grounded in reality have been our secret.
I am a mom based in reality with much faith and belief in my son. I don’t look at IQ ..I look at all the other
forms of INTELLIGENCE THAT he shows me and the world every day: He has an incredible sense of humor,
CREATIVITY, HIS ABILITY TO PROBLEM SOLVE, his ability to “read” another person’s
emotion. He is quite intuitive, his artistic ability, his musicality, his
insightfulness of a person’s spirit..He knows when a person looks at him and
thinks of him as “less than”.
As each person is different so are individuals with AS. You will find a broad level of capabilities
amongst our children. I am just saying
to please do not give up before you even tried with your child.
My son has Angelman Syndrome Del +. He was diagnosed in 2009 at 7 years old. He was originally diagnosed with Cerebral
Palsy. In retrospect, I am happy we got
a late diagnosis. I did know of the “never
will do” or “he cannot and will not do that”
My mind set was one day he will walk, one day he will feed himself, one
day he will “talk: (not in the sense of you and I talk..but in the sense of a
form of universal communication).
I find it sad any
parent would not be open to hear what their child is capable of so much more
than what the ‘experts’ say. It breaks
my heart for any child that the bar has been set so low. It's disappointing that any parent would not listen to what other parents that have walked this journey before will tell you with
NO doubts that there child has surpassed any low expectation put upon them.
“The traditional definition of intelligence is too narrow,
and thus a broader definition more accurately reflects the differing ways in which
humans think and learn. Traditional
interpretation of intelligence collapses under the weight of its own logic and
definition, noting that intelligence is usually defined as the cognitive or
mental capacity of an individual, which by logical necessity would include all
forms of mental qualities, not just the ones most transparent to I.Q. tests”
List of types/forms of INTELLIGENCE:
·
Musical - rhythmic & harmonic
·
Visual - spatial
·
Verbal - linguistic
·
Logical - mathematical
·
Bodily - kinesthetic
·
Interpersonal
·
Intrapersonal
·
Naturalistic
·
Existential
·
Critical reception
·
Creative/Artistic
IQ tests only measure linguistic and logical-mathematical
abilities.
My advice to all newly diagnosed parents of a child with AS
or any developmental disability: DO NOT
SELL YOUR CHILD SHORT; LOOK BEYOND THE CANNOTS OR WILL NEVERS…SEE THE MAYBES.WHAT
IFS..LET’S TRY THIS, and WHY NOTS.
I will never sell my son short and I sure as hell will not
let anyone else take the “possible” away
from him.
