A couple of weeks ago, I took my son and a friend of his to a local forest preserve—that being one of the few things open during the pandemic. My son needs more than just nice scenery and a walking path to maintain his interest, and my goal was to keep us all out of the house and in the fresh air for at least 4 hours, including lunch. So, I had my husband pop out to Target early in the morning to pick up a couple of youth-sized fishing poles. My son he “loves to fish, but not to eat fish.” This was not a problem as the forest preserve is for catch-and-release in its lakes, and we barely go there before midday—probably the worst time to fish. Nonetheless, the two boys took to it with great enthusiasm and limited skill. As a result—and this is karma for all the times my dad took my sister and me fishing—I spent 95% of my four hours gently unsnagging hooks from branches, rocks and, occasionally, the other child, as well as untangling wads of snarled fishline. If you have never done this, I’ll try to give you an idea of the frustration this entails. Fishing line is almost transparent, particularly in full sunlight. It is also very fine. The fish cannot see it easily and to a middle-aged mom with eyeglasses, it’s virtually invisible. You have to almost feel your way through the tangles. Sometimes it takes another person to help you stretch out one or more parts of the line so you can clearly see which is under and which is over. Fishing line is relatively strong, but has its limits. If you pull too hard in your effort to unsnag a hook from an underwater rock, it will break. And sometimes, you have to just cut the line and start over.
Sorting out life for a family member with special needs can feel a lot like a years-long attempt to unsnarl and entire spool of fishing line with the hook stuck on an underwater log in the middle of the lake. Your family member may have many different needs, and it can be very hard to see which one to tackle first. Moreover, many of the needs and the systems that can address them are interconnected. You frequently need the help of other people, both professionals and friends and other family members, to work your way through. And you can work extremely hard at one approach only to have it “snap”, leaving you to start over. I would never say to a client “You must take this step first and then that one,” but I do have a process that I use when accompanying a family. It has stages, some of which may run concurrently or overlap, and it has iterations. (Photo courtesy of Boriskin Vladislav via Unsplash).
The first stage is to envision. Acting against the very natural pressure, you may feel to do something concrete to support a future for your loved one with a disability. Please take a reasonable amount of time to first envision what your family member wants her/his future to look like. It is a tired cliché, but if you’ve met one person in any particular demographic—in this case “with a disability”—you’ve met one person in that demographic. Just like the rest of us, your family member with a disability may be an introvert or an extrovert, a romantic or a pragmatic, active or sedentary, a risk-taker or risk-averse, inclined to sports or inclined towards academics, a hard-worker or a person who’d rather relax a lot, an animal lover or one whose rather afraid of animals. And of course, the vision is going to vary greatly, depending on the person’s age. Most important, the vision must be that of the person her/himself even though parents, siblings and friends may be providing support and input. Here are some examples of visioning questions:
In childhood. What does your child need to do her/his best at school and in learning social interaction? Can s/he function effectively in a large classroom with or without an aide, or is a smaller setting better? Is a more traditional school setting with desks and textbooks and computers appropriate or would s/he thrive in an alternative environment such as a Montessori, a Steiner/Waldorf school or another? Is it better that the school be close with an opportunity to come home for lunch or can your child handle a commute? What does your child like to do for fun and can s/he join the neighborhood or school teams, clubs or extracurricular classes? What types of therapies will benefit your child? Are they available within the school setting or must you find them outside? What is an acceptable balance for you among your child’s education, your child’s therapies or appointments, and your child’s social/recreational life?
In adolescence. What does your teenager want or need most to learn? Will your child benefit from staying in school as long as possible—until age 21 in most states and 26 in some? Does he or she want to continue academics? Does s/he have friends from lower school and what is the best way of staying connected with them? How independent does your teen want to be, and what can help that? Is it appropriate for her/him to take public transportation or go shopping, swimming or biking alone or with friends? Does your teen want to learn to drive and would that be a possibility? Does your teen want to get a part-time job and earn some money? Does your teen want to date and what would that look like for her/him?
In adulthood. How does your family member feel about continuing to live with you (parents or a sibling)? Does s/he want to move out? Does s/he want to move into an apartment with friends as roommates or would the person prefer to live alone? Does s/he envision living with a current or potential romantic partner? How will s/he stay connected to siblings, who may disperse? Does your family member want to get or maintain a job? Would the person want to start a micro-business? Where in the geographic area would the person need to live to best access work, friends and recreational opportunities? What sorts of transportation and accessibility will the person need to maintain an active and engaged life?
My son is heading out to the same forest preserve today, this time with is summer camp mates. He is outfitted with a couple of new bobbers and lures and another roll of fishing line, as well as a small net. He is still in the envisioning stage of his fishing career. His head is filled with the vision of the big one that won’t get away, at least until he has a photo of himself holding it. That vision will, I hope, sustain him throughout the years of mentoring from Dad and Grandpa and the days of practicing he will need to see his vision through. Helping your family member with a disability creates a vision for each step or for her/his life takes time, but it is a critical step to sustain and guide you in the subsequent long and tedious work of untangling the lines of process and funding, required to make that vision a reality.