Let me begin with some background. I am a Soldier stationed at Fort Hood, proud husband, and father of three children. Our youngest child, Tyler, in 2007, was diagnosed with chromosomal deletion, hypotonia, and global developmental delays.
Tyler was born in the fall of 2004 and had mild complications with his birth due to meconium aspiration following a C-section, but was soon given a clean bill of health and he was released to come home with us. Tyler almost never cried, slept through the night even with all the house noise. At four weeks old, our oldest son was hospitalized with Reactive Airway Disease and failure to maintain oxygen levels. A nurse who saw Tyler said he looked and sounded as if he, too was having issues with his breathing. She sent us to the ER downstairs. Tyler was not hospitalized that day, but it did begin the quest to find out what was going on with him.
At eight months old, after constant ear infections, URI, and failure to meet certain milestones, Tyler was seen by a specialist and was very concerned due to his respiratory illnesses, his low muscle tone, and failure to thrive. After countless consults with neurologists, geneticists, therapists, and developmental pediatricians it seemed Tyler had a mystery diagnosis. Throughout his first three years he was misdiagnosed with Cystic Fibrosis, Cerebral Palsy, and Spinal Muscular Atrophy. This had become extremely frustrating for us. Without a concrete diagnosis, where do we start? What is the problem? Also, without a diagnosis, it is almost impossible to be approved for the different therapies that would be otherwise available.
Finally after years of searching, Tyler was diagnosed with a very rare chromosomal deletion due to a brand new test, the micro array test out of the Baylor College of Medicine in Houston.
Our ultimate goal for Tyler is that he will be able to reach his full potential in life. Currently Tyler attends speech, physical, and occupational therapies 4-5 times a week. Tyler is currently enrolled in Preschool Programs for Children with Disabilities (PPCD) with hopes to eventually progress from a special education program to mainstream education. A new agreement between the University of Texas and Fort Hood offers much promise to our family and many other military families like us. Through the Fort Hood Army 360 Program, the Texas Center for Disabilities Studies at the University of Texas at Austin is working in partnership with the Exceptional Family Member Program (EFMP) at Fort Hood.
The Fort Hood Army 360 Program has helped our family by developing a PCP – person center plan exclusively for Tyler. It outlines Tyler’s unique needs and what is important to him. They worked with us and helped brainstorm every important detail regarding Tyler. It included information about anything regarding Tyler’s special characteristics that will help him be successful and all things important in Tyler’s life. The plan also illustrates who best can support Tyler and how they can serve him best. We provide as much information in our first meeting by brainstorming topics from his favorites to how he communicates and the meanings. They then take what we have gathered a compile a plan. Its a plan that can always be changed and give anyone working with him key details that are centered around Tyler. It is a great snapshot of who Tyler is and what works best for him. They also look into resources to help Tyler. Anything from a military resource like respite care to a product that can with his self care needs.
After the team came up with our plan they then presented it to us and gave us an electronic copy to share with others or add more information as we navigate through what Tyler needs. They added possible solutions and strategies to help make Tyler’s daily life better and our family life. This included a time line and who would help make it work.
The idea that the information is centralized and there is a plan to facilitate Tyler’s growth in specific areas is essential for our family. Having to deal with so many needs in various areas (like speech, behavior, educational and self- help skills) can be overwhelming. It also taught us how to navigate through the uniqueness and challanges that come with having a special needs child. They built a bridge between military resources and other resources to make Tyler's life better.
Our family is not alone by any means with our challenges of raising a child with special needs and ensuring our son has the best possible chance of reaching his potential. It is a tough road for us and countless other military families. According to the Military Homefront website, over 100,000 military families have members with special needs. These include spouses, children, or dependent parents who require special medical or educational services. These family members have a diagnosed physical, intellectual or emotional condition.
Having a special needs child has taught our family many invaluable lessons. We are very thankful and appreciative of the care the Army and its family programs like the Fort Hood Army 360 Program . This program has provided my family an invaluable tool to help support my son Tyler and all of those that work with him. We can now use what they have taught us and the Person Centered Plan at Fort Hood or anywhere the Army sends us. A Soldier can focus on the mission while knowing their Family is supported at home.
Subscribe to:
Post Comments (Atom)
Tyler is Amazing!!!! What a journey for him and your family.
ReplyDeleteAs one of the navigators with the Fort Hood 360 support group I throughly enjoyed working with your family. It was a honor to have been welcomed into your home and for you and Suzie to share your story with us. Tyler is a truly a blessing with remarkable parents who have and are an advocate for him. I'm so grateful for meeting your family and the friendship that has evolved.
please contact me shawn. ronnie emberton 559-972-6628
ReplyDelete