When it comes to guiding your child through the school years, it pays to get informed about the help you can expect…
My name is Kim Stagliano and I’m transition-phobic. Transitions make my skin crawl, raise the hairs on the back of my neck and coat me in a serious case of the heebie-jeebies. There is no cure for the heebie-jeebies. Right? (Wink, wink.)
Wrong! I’m speaking about my three beautiful daughters’ school transitions, of course: Mia, 16; Gianna, 15; and Bella, 11. They are all on the autism spectrum and have been in the system since they were toddlers.
We survived 13 transitions and have even prospered, despite the fears and sometimes paralyzing desire to simply S-T-O-P the process. However, like the growing number of gray hairs on my head, sometimes the best we can do is “disguise” transitions. We can never stop them—but we can survive them. Here’s what they look like in a public-school setting. A private setting is similar, although the student may have fewer building changes throughout his academic career.
Early Intervention Birth-to-Three Services
The definition of Early Intervention (EI) from Education.com is this: Special education and related services provided to children under age five. EI is designed to identify and treat developmental disabilities as early as possible. The idea is to prevent more serious disability, ensure the maximum growth and development of each child, and assist families as they raise a developmentally disabled child.
When you start to wonder if your infant or toddler is behind in developmental age versus chronological age, one place to start is your local/state-run early intervention program. They will evaluate your child’s present level of development, and can create an Individualized Family Service Plan (IFSP), which is a roadmap of what the child needs and how the EI team plans to deliver services. Your pediatrician, or your day care or preschool provider, should be able to help you find the appropriate local contact information.
As tough as it is to pick up the phone that first time, don’t be afraid to make the call. State or county-run EI is available to everyone at no charge. Some parents decide to pursue private services through a psychologist, speech therapist, or other professional. Others choose a combination of public and private services. There is no right or wrong way. You just need to get busy seeking assistance.
Transition at Age 36 Months to Preschool
When a child turns three, he graduates from birth-to-three services, to school-age services. Assuming he or she still qualifies for services at this time, a transition team will work with Mom and Dad, or the guardian or caregiver, to prepare a school-style plan called an Individualized Education Plan or IEP. The IEP is similar to the IFSP and is implemented in accordance with Part C of the Individuals with Disabilities Education Act (IDEA). Services are provided free of charge through the public school system. Parents may also seek a private school setting that will accommodate a child with special needs or use private home-based services. Check with your insurance company to see what therapies are covered. A terrific book to help you navigate the insurance maze is Blessed With Autism, by Christina Peck.
Many families find out that preschool services are less intense than birth-to-three services, a cause for concern when your doctor or specialist has recommended 30-plus hours of services per week. Sometimes parents are shocked to see so many hours of therapy lost once the half-day preschool program is implemented. Talk to your school district about the availability of additional services based on your child’s specific needs.
Preschool to Kindergarten/Elementary School
Welcome to the big leagues! Your child is now enrolled in kindergarten, and the IEP process continues from preschool. Remember, that the word “individual” in IEP really does mean individualized. You might be in favor of full mainstreaming for your child. Or you may prefer a specialized resource program with more intense one-on-one interaction. Learn what is available in your school, and discuss it with your team. If you ask for more than the norm you might get some pushback, but that is only par for the course. Wrightslaw.com is the online bible for special education (SPED) regulations. It will help any parent navigating the SPED world.
Kindergarten is usually a welcoming environment (one would hope!). All of the kids are just embarking on their first “real”school, and our experience was positive for all three girls.
Elementary School to Middle School
The middle school transition terrified me. After all, middle school is a real change from the cuddly world of elementary school. While most sixth graders still look like little kids, some of the eighth graders are shaving! Public middle school means changing classrooms, using a locker, carrying heavier books. For many of us, the gap between the regular ed students and our own kids may have grown significantly since the easy days of kindergarten. That kind of hurts when you see how different your child is from his or her peers.
Our middle school brought in a team from the Department of Developmental Services to talk to us about enrolling our children in the state system. Here in Connecticut, DDS starts planning budgets for adult services based on the population age 14 and older. If your child is not in the system, obtaining a budget for later services might be difficult. If you haven’t, it’s time to contact your own state DDS to learn about future planning.
Middle School to High School
As the population of students with autism has aged, there is a wave of kids entering high school. To say not every district is prepared is an understatement. Our district spent two years planning for the first public school autism specialized resource program. My daughter Mia and four classmates launched the program, which was modeled on the successful middle school program that had been in place for four years. In 2013 we will begin planning for the lite program, which is the portion of high school for children ages 18 through 21. This program will place the children outside of the school, some into work programs, others into programs appropriate to their skills and needs. The line between school age and adult services is starting to blur at this point.
The End of School Services and Into Adulthood
For those students with an autism diagnosis and their families, this transition may be difficult. However, like every step of my family’s autism journey, parents who came before us paved the way. I have friends with adult children who are thriving in well-run, quality living situations. My husband and I haven’t conquered our fear of talking about what happens next. Where will the girls live? I use gallows humor to disguise my fear. Heck, with three kids on the spectrum we are a group home!
I have faith that having survived 13 transitions so far, and with a few more to come, my girls will indeed thrive and have healthy, fulfilling lives.
I sincerely wish the same for your family too.