“Begin with the end in mind.” This advice, coined nearly 30 years ago in the popular book The 7 Habits of Highly Effective People, remains relevant today – especially for parents of children with special needs.
While the day-to-day challenges and celebrations of raising a child with special needs often occupy parents’ thoughts, their child’s eventual transition to adulthood can also loom large, feeling like it’s both ages away and just around the corner.
That’s why Karen Rusk, an expert in transition planning with IN*SOURCE, an organization that provides special education parent support across Indiana, encourages families to start thinking about an end goal for their child sooner rather than later. “There’s so much stuff out there that transition can feel overwhelming, but what we all want for our children is for them to be able to live as independently as possible,” says Rusk, who has three sons with special needs. “If we’re beginning with the end in mind, we need to start thinking about that transition early on and working on skills that will help toward that goal.”
Whether your child is starting kindergarten or heading to high school, here are some ways to keep on top of transition planning.
Push to start earlier
Federal education law requires that your child’s IEP (Individualized Education Program) include transition planning services by the age of 16. But ideally, experts say those services should begin a few years earlier. Wrightslaw.com, a popular website about special education law and advocacy, suggests parents research transition needs for their child’s specific disability and then use that information to make the case to their IEP team about why transition planning should begin earlier.
Involve your child
Rusk stresses that parents should involve their child in the process as early as possible. “As parents, we’re so used to looking at a situation and making a decision by ourselves that we don’t start early enough to consider that students should be involved in their transition,” she says. “I’m not saying that I expect a kiddo to sit through their entire case conference in first grade. But you can talk to your child about school and ask, ‘What are you good at? What’s really hard for you?’ What we don’t want is for them to be sitting in their very first case conference when they’re in high school and they’re expected to do all of these things.”Involving your child early in the process can also help them better understand his or her disability and what he or she needs to be successful, which are two main goals of transition planning, experts say.
The PACER Center, a national advocacy organization for children and young adults with disabilities, has this advice on its website: “All young people need a strong sense of their strengths, abilities, interests and values. If students have a disability, they should also be aware of how it might affect them at work, in the community and in their educational pursuits, and they should be able to explain it to others.”
Start early with basic skills
Helping kids master everyday tasks is not only confidence-boosting, but helpful to the whole family. Rusk says parents are amazed when she says that she hasn’t done laundry in years. Instead, she taught her boys how to do their own laundry early on in an effort to get a head start on independent living skills.
Other basic competencies, such as bathing and dressing, waking up to an alarm clock, shopping for groceries and using a cellphone can also be worked on when children are young to help lessen the learning curve around transition time.
“Maybe your child won’t learn to drive, but can they call an Uber? Can they do laundry or make a trip to the grocery store?” Rusk asks. “While they may be in a learning environment with students who are just like them, we don’t have special grocery stores; we don’t have special churches. We still have to prepare them to live and work within a community.”
Stay the course
No matter what setbacks you face in your child’s transition journey, keep pushing forward. Rusk say she’s a firm believer in staying flexible and having a plan B in place.
“We can have the greatest plan for our kids. We’re going to try for that general education classroom all the way, he’s going to go to college! But if that doesn’t happen, don’t think of it is as a failure; it’s just a change in plans,” Rusk says. “Even if parents do everything 100 percent right, they’re still going to have failures with their kiddos. We can’t let our failures stop us from trying.”