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Denise’s Journey. 1998 - 2004. By Auntie Debbie.

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denise s journey

Denise’sJourney

1998 - 2004

By Auntie Debbie

slide2

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, Denise’s 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 Denise’s medical records from North Carolina. Unfortunately, by June of 2002, Denise’s 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 Denise’s 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.

Denise’s Auntie Debbie (Shane’s 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 Children’s Hospital in Denver for an initial evaluation and to get her immunizations up-to-date.

December 2002 - Auntie Debbie and Grandma Della (Shane’s mother) take Denise to Children’s 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 Denise’s schooling and to get her evaluated so they can decide what services she needs.

January 2003 - Shane and Della (Shane’s 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 (Denise’s little brother) live with Shane’s 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 didn’t 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 didn’t 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

slide7

September 2003 – All the family at Grandma Della and Grandpa Tilo’s house for Grandma’s birthday party. Denise’s 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 Denise’s world and start teaching her things like how to eat, walk, touch, talk and much more.

With Auntie Gail at Grandma’s birthday party - 2003

Laughing with Auntie Debbie – April 2004

Taking a lick of a cookie – April 2004

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Me and my brother Boogie at Halloween

With Daddy for Boogie’s 2nd birthday party

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).

Boogie’s 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