Denise’s Journey

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DenisesJourney
1998 - 2004

• By Auntie Debbie

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Denise is completely blind with sensory
processing issues, learning difficulties, low
muscle tone and growth problems. Her official
diagnosis is Optic Nerve Hypoplasia /
Septo-Optic Dysplasia (ONH-SOD) with Nystagmus,
Pituitary Dwarfism Autism.
She was born in Denver, Colorado, the Summer of
1998 after a delivery complicated by breech
presentation and a C-Section. She weighed 6
pounds 9 ounces and was jaundiced for a few
weeks. When Denise was about 1 month old, her
parents, Shane Tonya, noticed that her eyes
moved constantly back and forth, which was later
diagnosed as nystagmus. Her father was in the
Marines so at this time they lived in Twenty-Nine
Palms, California and then they moved to North
Carolina. When Denise was about 6 months old she
was seen by an Ophthalmologist after her parents
noticed that she seemed to also have visual
problems.
While Denise was in North Carolina she did
receive some Early Childhood Intervention
services, but she was phased out of this at about
1 ½ years old. Then at almost 2 years old she
received in-home occupational and physical
therapy services, but this was only for about 6
months and then that was discontinued.
In January of 2002, Denises daddy completed his
service in the Marine Corp and they moved back to
Denver. Over the next few months they got
settled in and received Denises medical records
from North Carolina. Unfortunately, by June of
2002, Denises parents decided that due to many
different reasons they could no longer stay
together and they eventually divorced. For a
while after their separation they worked out a
schedule to share responsibility to care for
Denise, but after about a year or so Denises
father gained full custody of her.
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• When Denise was a little over 4 years old she had
  global developmental delays and extreme sensory
  processing issues where she gagged at
  everything.
• She could not be around people
• She could not tolerate most noises
• She could not really touch anything
• She could not walk so she was carried
  everywhere
• She could not eat so she lived on Pediasure from
  a bottle
• She could not speak, but made non-sensical
  noises
• She had difficulties sleeping
• She was not potty trained.

Denises Auntie Debbie (Shanes oldest sister)
started trying to help by working with Denise on
how to eat food, how to sit up, how to touch
things by explaining what they were, how to say
words, how to walk, and whatever else came along.
She started reaching through to Denise by
singing songs and talking to her in a rhythmic
voice and noticed that Denise responded very well
to this. Debbie started teaching Denise how to
eat by slowly introducing her to foods like soup
by first explaining what it was, singing about
it, having Denise feel Debbie eat it and then
little by little Denise would take small bites.
It took about 3 years, but Denise no longer
needed Pediasure and started eating when she was
7 years old.
Auntie Debbie clapping some rhythms for me 2003
Denise also gagged whenever she touched
anything. EVERYTHING was a sensory overload for
her. Debbie started helping Denise touch things
by holding it, explaining what it was to Denise,
and then very carefully helping her to touch it.
It took many, many times repeating before Denise
was able to touch the things that she needs to
accomplish day-to-day tasks.
Mostly I needed to lay my head on the floor - 2003
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September of 2002 - Denise had her first
appointment at The Childrens Hospital in Denver
for an initial evaluation and to get her
immunizations up-to-date. December 2002 - Auntie
Debbie and Grandma Della (Shanes mother) take
Denise to Childrens Hospital for an MRI. After
the MRI is read the doctors conclude that Denise
has Septo-Optic Dysplasia, Optic Nerve Hypoplasia
and Pituitary Dwarfism. They were also concerned
that she might have Diabetes Insipidis because
she got dehydrated very easily and needed to
constantly drink lots of water. Around that same
time it was determined that Denise needed to see
a doctor in Pediatric Endocrinology to see what
to do about her growth issues. She was so small
that she was not even on the charts for her age
group.
With my Daddy Shane - 2003
December 2002 - Shane and Debbie go talk with
Adams County District 50 about Denises schooling
and to get her evaluated so they can decide what
services she needs. January 2003 - Shane and
Della (Shanes mom) took Denise to Anchor Center
for the Blind for a complete evaluation and to
get her enrolled in their program. Denise was
already 4 ½ years old, but since she was so far
behind in everything Anchor Center approved her
to attend until she was 6 years old (they usually
only take kids up to 5 years old). Anchor
Center for the Blind is such an awesome place for
kids with visual problems, but especially for
kids who have multiple disabilities like Denise.
Auntie Debbie teaching me how to dance - 2003
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Shane, Denise and Boogie (Denises little
brother) live with Shanes mom and dad so that
they can provide support and help him with the
kids. Grandma Della was trying to help Denise
stand up, but it was pretty hard for her to stand
back then. Denise has very low muscle tone and
that is part of the reason why she didnt learn
how to stand and start walking until she was
about 6 years old.
Denise did learn how to climb up onto her bed and
she enjoyed laying there listening to whatever
was going on in the house. She also had a
favorite alphabet toy that made great noises and
she loved to bring it on the bed with her.
Grandma helping me stand up no easy task - 2003
Me and my Daddy! Nov 2003
Laying on my bed and enjoying the sounds - 2003
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With Auntie Chrissy at the playground March 2004
Daddy Auntie Gail 1st day of school April
2004
Spring 2004 My Auntie Chrissy came by and took
me to the playground across the street from our
house. She took me on the slide and we had a
great time!
April 7, 2004 My first day of school at
Fairview Elementary in Adams County School
District 50. Auntie Gail came by on her way to
work to help my Daddy get me ready and practice
my walking. When my Daddy put me on the bus I
was really scared because I didnt understand
what was happening. As it turned out though, I
really love school and also really love riding on
the bus.
Really scared! Daddy putting me on the bus - 2004
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September 2003 All the family at Grandma Della
and Grandpa Tilos house for Grandmas birthday
party. Denises Auntie Gail held her and sang to
her to make it easier for Denise to be around
everyone. Back then it was very difficult for
Denise to be around people because of all the
noise and activity.
Auntie Debbie must be tickling Denise because
they sure are laughing and enjoying themselves.
Denise loved her family very much and they took
good care of her, but it was Auntie Debbie that
Denise ended up making a connection with. Auntie
Debbie was able to get into Denises world and
start teaching her things like how to eat, walk,
touch, talk and much more.
With Auntie Gail at Grandmas birthday party -
2003
Laughing with Auntie Debbie April 2004
Taking a lick of a cookie April 2004
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With Daddy for Boogies 2nd birthday party
Me and my brother Boogie at Halloween
Denise and her brother Boogie look great. He was
dressed up like a puppy dog and Denise was
dressed up like one of her favorite characters,
Tigger TTFN (Ta Ta For Now).
Boogies second birthday party (his real name is
Domitillio after our Grandpa). Denise is hanging
with her Daddy while they sing Happy Birthday.
Denise had difficulties sitting in chairs, but
her Grandma Della got her this great Spongebob
Squarepants blow up chair and she just loved it!
Thank you for joining Denise on her journey. Be
sure to check out her other slideshows.
Grandma Della got me this great chair! Dec 2003