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Train, talk it through then try the run.

The father of one of my son’s schoolmates approached me on a field trip. He mentioned that he was thinking, maybe, of attending one of my upcoming workshops on government benefits, work incentives and ABLE accounts. He said, “My son is only 14, but well, you know, things are coming up in the future. However, we just don’t know…” His sentence trailed off, but I could fill in the missing words “…don’t know what he might be capable of or need in the future.” I could fill them in easily, because pretty much every family comes to me with the same unknowns. It has lately been a happier world, where people with disabilities are finding jobs, having their own apartments, getting married and even starring in TV shows (although, don’t get me wrong, there a long, long way further to go with each of these and more). But as people with disabilities aim for more multi-dimensional lives, it also makes future planning appear more of a foggy road than a clear one.

I was reminded of this as I watched my own son compete in his new sport of choice, parkour (think American Ninja Warrior for children). My son is really new to the sport, and so the outcome of each competition is very much an unknown too. Each competition features a new obstacle course, so contestants don’t become too familiar with the obstacles. Before the contestants run, the staff from the host gym talk the contestants through the entire course, explaining how one can get points on each obstacle. Then, typically, a coach from the contestant’s home gym follows along to provide encouragement and reminders for each obstacle during each contestant’s run. But each course is constructed to be consistent with the skills the kids have learned that should be transferable from one piece of equipment to others that share some of the same features.

For example, at his home gym, my son has practiced using wooden rings to move across a row of pegs. Basically, one grasps the rings, which are hanging from the two pegs closest to one end of the row. Then, by swinging the body side to side, the athlete gains enough momentum to lift one ring off its peg and move it to a further one. Swinging back, the person does the same with the ring in the other hand. The contestant repeats until s/he has gone all the way across the row of pegs. In last weeks’ competition, the athletes were asked instead to grasp a wooden ring in each hand and move each hand’s across a bar, which bent up and down by turns. The hard part was that where the right-hand bar went down, the left-hand one went up. Although my son was good with the peg-and-ring set up at home, he struggled with the “ring maze” setup in the competition.

I made this digression because planning for the future of your child with a disability is somewhat analogous to training and competing in parkour. First, you need to build transferable skills for both your child and yourself. For your child, this means finding an educational setting that will best support learning and behavioral self-management. You know your child better than the school district. Please, do not accept the district’s appraisal of what your child can do if you can think of a better way.

The neighborhood school really tried to accommodate our son. They tried to accommodate his non-typical learning style. The realized that too many questions or problems on a page could overwhelm him, so they gave it to him in smaller servings. They had him work in smaller groups with a resource teacher. They tried to help him develop and employ strategies to stay calm when he did feel overwhelmed. They let him bring and use “fidgets.” However, their approach to his sometimes challenging behavior was to let him leave the classroom to engage in alternative calming activities. On the day he was out of the classroom for four hours, I set out to find another setting. The district would have moved him to a self-contained classroom that used junk-food snacks as incentive to remain in one’s desk. Nope. The problems my son faced (or caused) in the classroom stemmed mainly from the fact that the most effective way for him to learn was NOT to sit in a desk and study from a textbook. Finally, we found his school home in a small Montessori school that sets age-appropriate expectations for both academics and behavior, but let him work inside or outside, sitting, standing or lying on the floor and encouraged him to initiates his own projects.

For yourself, as a parent, building your skills requires advocacy and support groups that offer education on IEPs, getting services while in school, how to get the most out of your child’s school transition years (14 ½ to 21 in Illinois), how to obtain and maintain government benefits, how to access adult services, and how to help your adult child find employment, a good supported living situation, relationships, and a community on a budget you can afford. School districts can be a good staring point. Our local special education cooperative offers “Next Steps”, which is a parent-targeted series, covering many of these topics. I myself frequently offer workshops at schools, for example, this series in Chicago’s Western Suburbs. Disability-specific groups such as Ups for Downs, the National Association for Down Syndrome, the Chicago Autism Connection, United Cerebral Palsy and similar, as well as pan-disability advocacy groups like the ARC, frequently run webinars, live workshops and conferences, lasting from a hour to several days. Many times, there is also a self-advocacy track for your child to attend.

Do a “talk through” of your child’s potential future. When the hosting gym coaches talk the contestants through the course, they are presenting an ideal. In an ideal world, each competitor would clear the obstacle in the prescribed way, thus gaining all possible points for that obstacle. In reality, each competitor knows that certain obstacles will cause challenges and is prepared for the possibility that s/he may not clear a particular obstacle with all points, or even clear it at all. But even if they cannot achieve the ultimate performance, it’s motivating and useful to have a clear understanding of the course before the starting buzzer. It is also likely that later contestants have a bit of an advantage as they can see, from the runs of their predecessors, which techniques and approaches are most likely to succeed at a particular obstacle. To get a good sense of where your child could go in the future, you can use a documented process like PATH or MAPS for the Future. Or you can use a person-centered planning process of your own devising. The three things that such a process requires the most to succeed are an effective way to include real input from the person with a disability, a solid knowledge of what supports are currently available, and the creativity to think beyond those that are already available.

Get good coaches for your “run”. As your child with a disability actually sets out along the road that s/he and you mapped out, find advisers, who can help you navigate the obstacles. These may include family and friends who care about your child’s well-being, a service provider whose philosophy you agree with and admire, your child’s teachers, therapists and doctors, an estate-planning attorney, and a financial planner who really understands the intricacies of special-needs planning (here is a good place to find such), and a good benefits consultant who understands all the ins and outs of Social Security, Medicaid, Medicare and their related Work Incentives. When my son and the other newbies on the team run, the head coach jogs alongside him/her over the entire course. He reminds my son of the technical point of each obstacle and shouts encouragement. That is also the job of your special-needs advisers. They should accompany you and your child through your child’s life. At each step of the way—particularly at important inflection points such as the start of transition, the day your child turns 18 and qualifies for benefits, the day your child ages out of school, the day your child starts paid work, or the day something happens to you—the parent—your advisers should be reminding you about the technicalities and challenges of putting the services your child needs in place. And, they should be shouting encouragement as your strongest cheerleaders.

I cannot use a crystal ball to tell the father of my son’s classmate exactly what his son will do and need in the future. But, if he chooses to work with me, I can promise to accompany him and provide guidance over the whole course.

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