Opinion: Preparing special-needs kids for the future — as we did with our son
Marion Morgenthal | August 31, 2023
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As the mother of a 37-year-old son with special needs who is living a full and independent life, I often think about what it took to get here. Alex was one of the original members of the POINT (Pursuing our INdependence Together) residential community in White Plains, New York, which was founded in 2008 by families of disabled individuals who fell through the cracks — too high-functioning for group homes, not ready to live totally without supports.
Once school or other development programs end, so much is gone all at once — structured days, weeks and years; regular social interaction with peers; non-parental authority figures; speech, occupational and physical therapy; and, critically, the sense that the young adult has a place that belongs to them outside their family. We designed the community to provide some of the components of what was no longer available, with scheduled voluntary activities, support from staff social workers, a 24/7 emergency phone line and, most important, peers with whom they could build independent lives.
We chose White Plains because it is a small city with a range of housing in a central core, robust public transportation, and a lively retail and business environment that provides opportunities for work, recreation and shopping — all accessible on foot or by bus/train. We partnered with two nonsectarian human services agencies to manage the operation and growth of the community.
We began with 15 members, some local and others whose families were as far away as California and Kentucky. The community now has more than 55 members, with close to a 50:50 ratio of men and women, representing 10 states.
POINT members live in apartment buildings across White Plains, some with roommates and others alone. Families pay for the POINT program fee, housing, food, etc., supplemented by members’ earnings and federal and local programs including SSI/SSD. All participants are expected to work, do internships, go to school and/or attend day programs. There are planned social activities, and members can create their own. There is a “clubhouse” space for classes, parties, movie nights, etc., within walking distance of the apartments.
We see our son living a life that is far beyond anything we could have envisioned for him when he was a child. He is independent, he works, he manages his calendar, he seeks appropriate recreation and entertainment, and he is a member of a small, comfortable community that interacts with the broader neighborhood.
How did a third grader with limited social skills, significant learning disabilities and very little interest in doing things for himself get here? Here are some key lessons that we learned:
- Maximize independence whenever possible: Early on, we heard the expression “the dignity of risk.” Overprotecting special-needs kids, while a natural inclination, will limit their abilities and possibilities more than doing so with a neurotypical child. For example, we sent our son to camp from ages 9 to 17, first for one week, then for four, and then for the full summer. He loved being with peers and counselors, and began developing leadership skills while figuring things out without mom and dad hovering. To see our son embrace his independence today is wonderful payback for all those situations when our hearts were in our mouths as he set off on adventures for which he was only marginally ready.
- Be flexible: No one answer is right for everyone, or for every time. In elementary and middle school, we placed our son in an inclusion setting, in classes with both neurotypical and learning-disabled students. This provided an environment that had a range of academic achievement and staff to meet students where they were and help them grow. But when it came to high school, we reversed course and placed him at a boarding school for youngsters with special needs. We were able to partially defray the cost with funding from New York State. In this environment, Alex learned some independent living skills, like managing his laundry, organizing his belongings and getting where he needed to be without us overseeing every action he took. At each transition, we evaluated our options and found what was best for him and for at that time. At several points, the correct program didn’t exist — so we joined forces with other parents and created it.
- Find professionals with the vision, expertise and flexibility to help your child grow: For Alex, these included an elementary school principal who focused on his potential rather than his deficits; a camp director who pushed all kids to explore their interests and challenge themselves in athletics, performing arts and socialization; and human services agencies committed to building an enviable life for individuals with social and cognitive challenges.
- Collect other families: More than once, it took the power of the group to form programs or nudge them in a more positive direction — things individual parents could not accomplish on their own. Just as developmentally disabled children and adults need a community of peers, so, too, do their families. From Alex’s camp and schools, we formed friendships with other parents who became the core of what it took to create POINT.
- Stay involved: After high school, we chose a postsecondary residential program to build Alex’s vocational skills, social network and independence (although, frequently, independent skills were left on the doorstep when he returned home for visits). Being active in schools, and supporting them through fundraising and advocacy, created a partnership with school leaders that allowed us a voice in how Alex could best be served. Now that he is part of the POINT Community, we continue the same supports with the organizations that are administering the program. We are seen as partners, not just consumers.
- Enjoy the successes: It’s easy to focus on gaps and shortcomings. We’ve learned to take great pleasure in seeing our son blossom into a self-assured young man who has found a comfortable place in the world. He is productive, has friends and enjoys his interactions both inside and outside the group. Some steps were small and some were huge, such as traveling by mass transit and flying cross-country alone. Some went backward. But we have much to be thankful for.
Marion Morgenthal is a former teacher and corporate vice president who currently does leadership coaching and facilitation. She is the mother of two sons, one of whom was a special education student throughout his school years, which led her to work with other parents to create POINT, an independent living community for people with disabilities.