and our Family
are a family of four, my husband Juan, who is a wonderful dad
and husband, my daughter Deloris, who is a great big sister
to Norman (she reads to him, does math, sings and plays with
him) and myself, Myrna. I try to do the best for my entire family.
As a family we enjoy traveling together, swimming and having
company at home.
son Norman is a 6-year old boy who was born at seven month and
three weeks gestation. When Norman was released from the hospital
and brought home, we thought we were bringing home a normal
baby. However, when I noticed that Norman was not developing
typically, I started to get worried and visited different doctors.
After many visits, Norman finally was diagnosed with blindness
as a result of undeveloped retina. A month after he started
receiving vision services, we noticed that Norman was not responding
to sounds and sure enough he was also diagnosed as deaf. Following
this diagnosis, it was later determined that he has both hypo
and hypertonia. For the first two years of his life we went
from doctor to doctor, and Norman underwent many surgeries and
various therapies. As time went by, it was as if another Norman
was born. Instead of having a "normal" boy, we had a child with
special needs and challenges, and we grew to accept him the
way he was. As a family, we have cried with him and for him,
laughed with him, struggled with him and the most important,
learned with him.
is now a six-year old boy with strengths and weaknesses. Norman
has the ability to use his fingertips to recognize different
objects. He uses his hands and feet to explore his environment;
he also has a good sense of smell and taste. Norman uses his
facial expressions, gestures, and even sounds and giggles to
express himself. In some ways, it's easy to understand Norman's
needs. When Norman is interested in something or if he is uncomfortable,
somehow he lets us know. We know he enjoys taking a bath or
going for a swim. Norman has a great personality, a sense of
humor and a wonderful smile that helps him a lot.
with the Educational Team
most important things for the educational team to do are: to
accept my child the way he is with his strengths and weaknesses,
to show interest in him, to challenge him educationally, to
be open and willing to learn and try new strategies, to make
adaptations, and to think in a positive manner. I would like
the educational team to work like a real "team." Communication
between home and school is very important. Issues that come
up really need to be shared with all members of the team especially
the family. The school team must realize that I am the mother
and I know my child more than they do and that I want the best
for my child. I am also a part of the team and I want to cooperate.
Basically, I want the team to see Norman and other children
like Norman not as "disabilities" or problems but as wonderful
children for them to get to know and support!
challenge that we have experienced as a team was deciding what
objects or adaptations to use for a particular activity. Another
challenge was ensuring that the entire team and everyone at
home needed to use the same objects and signs for the various
situations that happened at home and at school (e.g., eating,
playing and going to the bathroom). Another challenge is the
need to remain optimistic even if we do not see any progress.
It is necessary for us as a team, to remember and understand
that it is important to insist on using certain strategies consistently,
and to not feel discouraged or to give up easily.
has been using an object communication system. This communication
system was designed using five different objects that represent
different situations in his daily schedule at home and school.
We use a piece of seatbelt to represent going on the bus or
in the car, spoon for snack and lunch, a cup for drink, a piece
of diaper for going to the bathroom, and a small ball for play
time or recess. As a team we decided to pair the object with
the sign and the spoken word. This takes time but, Norman has
picked up the meaning of these objects and some signs like,
ALL DONE eating, and DRINK
or THIRSTY. Even though we are
using the object communication system, we have introduced some
other communication strategies as well. For example, we help
Norman touch the door frame to indicate entering or leaving
a room, or touch the chair to help him anticipate sitting down,
or to touch the water prior to taking a shower. Even though,
I try to do this as routinely as possible, I sometimes forget.
That's when my husband, daughter and even Norman remind me that
I have to do these cues.
it is difficult to ask Norman to touch or feel objects or textures.
Often he rejects this and takes away his hands. Instead of manipulating
his hands, we gently touch objects on his hands or any part
of his body. He immediately will reach for the object and take
it off his body. Norman prefers to explore at his own pace.
Sometimes he even explores too much! For example, when being
fed he sticks both hands in the bowl of food. He enjoys getting
all messy! At this time I am happy with the results I've noticed
through the use of these strategies. I know that our communication
will improve as long as we use them!