As parents and caretakers, we face many challenges in ensuring that our children are safe, healthy, and happy. My wife and I have encountered several scares. Our son had a respiratory episode a few days after he was born, which resulted in a week-long stay in the hospital, several tests, serious discussions with specialists about invasive surgeries, and ultimately a cardiac and respiratory monitor he needed for a year. Our daughter broke her collarbone and had to have it surgically repaired. Our youngest child spent the first week of his life in the NICU and about eighteen months later had another visit to the hospital with a concussion.
More recently, I have experienced a growing anxiety over who my children will be in adulthood. Will they grow up to be physically, mentally, and emotionally healthy, productive, and well-adjusted? Will they want to have a significant other and their own children, and will they actually realize those dreams? Will they have friends and other positive relationships? Will they have jobs that give them a sense of fulfillment and sustain them and their families? Am I doing the right things to ensure that my children will be prepared to “leave the nest” or otherwise have the best opportunity to feel productive and happy when that time comes?
The Role Schools Play
Schools play a significant role in preparing our children for that transition to adulthood. More and more, schools espouse “Life Ready” programming, and public schools have for years been, and continue to be, legally required to provide transition planning for special education students beginning no later than age 14. Nevertheless, the challenge of preparing any child for adulthood, particularly a child with disabilities, can be daunting. I see this play out from two perspectives — as a parent and as a school administrator.
As a parent, I live the challenge of preparing for adulthood with my children, particularly my middle child, who is autistic. Though my son is not yet 14, I am already beginning to consider how to prepare him for his life after graduation. Should I reinforce the scholarship that will make him successful in college or should I encourage him to build upon the talents he is demonstrating that could translate well into jobs in information technology or the skilled trades? How can I continue to motivate the coping, self-regulation, and positive social skills that he will need to maintain healthy relationships? Am I effectively communicating with his teachers and after-school program leaders and volunteers so that he is offered every opportunity to succeed?
In my job as an administrator at a public cyber charter school, I see and hear these same questions in the eyes and voices of each parent or caretaker who has entrusted a child’s education to our school. Doctors and teaching professionals can help us navigate the complex worlds of medicine and education, but no one knows a child like that child’s parent. This is why federal and state laws recognize the individualized education program (IEP) team structure, in which the parent and student play critical roles in planning the student’s education and preparing for post-graduation goals.
Parents and caretakers should feel comfortable asking questions. Doctors and educators are known to use technical terminology and acronyms that may be foreign to many of us, and we should not hesitate to ask for the layperson explanation. As a member of the IEP team, parents and caretakers (and, when appropriate, the student) should offer insight into the child’s personality and preferences. Teachers may have responsibilities for dozens of students, and just when they begin to gain real understanding about each one, it is time to wish the students a happy summer recess. It is acceptable to sometimes disagree with the professionals and look for resources to help advocate for other options.
OAR can be such a resource for families. The research OAR funds can help with advancements that will improve the quality and quantity of services available for individuals on the autism spectrum. More to the point, OAR offers a variety of valuable resources for educators, parents and caretakers, and students. These and other resources can help parents and caretakers and students prepare for meaningful discussions with teachers and other professionals that will improve outcomes and opportunities. Through OAR and its RUN FOR AUTISM, we can connect with other autism families who share similar experiences and will serve as additional sources of insight and support.
I am committed to doing everything I can to prepare my children for adulthood and applying that same commitment toward advocating for successful outcomes for students in Pennsylvania. I know that with proper intervention and preparation every child can grow into the happy and successful adult they were born to be.
Roberto Datorre is executive vice president for Commonwealth Charter Academy (CCA), a public cyber charter school in Pennsylvania serving over 10,000 students. In this role, he supports the school’s board, administrators, teachers, and other staff in creating and delivering innovative programs to educate and help prepare children for life after graduation from high school. He is also a member of OAR’s Board of Directors. He and his wife, Elizabeth, have three children – Catherine, RJ, and Christian. RJ’s autism diagnosis led Datorre and his wife to support the RUN FOR AUTISM when they both took an interest in long distance running in their late 30s.