When you first learn that your child has been diagnosed with a special health care need, you feel so isolated and overwhelmed. Before the diagnosis, you were parenting like everyone else. You had a well-manicured path and knew what you were doing. But then, suddenly, you were thrown off that path and left feeling very concerned about your family’s future
When my son was first diagnosed with autism 10 years ago, I felt like I had no resources. Google wasn’t a dominant social force, and we didn’t use smartphones or have access to the millions of apps that exist today. Instead, I relied on other parents as well as organizations and conferences. I became my own research expert. I literally filled an entire guest bedroom with piles of data, studies, books, and any other resources I could find that would be useful in caring for my son.
While there is plenty of information online today, there is no guarantee that it’s current or accurate. That’s why I’m thrilled to share a new service that makes it much easier to find relevant information for children with disabilities and special health care needs. At the end of June, the state of Texas’ Interagency Task Force for Children with Special Needs launched NavigateLifeTexas.org to help families and caregivers find information from early diagnosis through adulthood.
It’s such a revelation, and thousands of Texas parents will benefit from its development. I also believe that countless lives will be saved and improved as a result of access to better information for children of all ages and stages of the special needs journey.
The task force spent years meeting, interviewing, and working with parents and other stakeholders to develop NavigateLifeTexas.org. The outcome is a comprehensive website that parents can celebrate as a victory. It’s a victory over isolation. It’s a victory over despair. It’s a victory for hope. I am just ecstatic about this development for all the parents like me — those trying to do the best they can to guide their children through the maze of growing up with a special health care need.
What’s more, the website solves SO many problems that beset a family that has a child with a disability or special health care need. It covers everything from “What do I do now that I have a diagnosis?” to “How do I set up guardianship for my child now that he’s an adult?” It also provides videos of families sharing testimonials about their fears and struggles.
Now, finally, doctors have a dedicated resource to share with patients. I’ll never forget the day I received my son’s diagnosis of “PDD-NOS.” And then there was the piece of paper that said “OT” on it. Back then, I didn’t know what those acronyms meant and my doctor gave me no explanation. So without support or information, I went home and sobbed. If I’d had access to a website like NavigateLifeTexas.org, I could have saved myself years of worry. Hopefully, parents just learning about their child’s diagnosis will now be spared what I went through.
I’m so thankful that this site exists for parents who are just starting out on this path, or who are wondering what to do now that their children are approaching adulthood. And I’m particularly excited that NavigateLifeTexas.org
This post was written by Rene Craft. Rene is an Austin-based blogger, special needs advocate and communications professional. She is a member of the Autism Society of Central Texas.