Fabric of humanity

(5/2024) We humans are tribal, forming groups to survive. We build small towns and big cities, and improve ourselves with education. We communicate with other tribes when it suits us. We have established social norms of behavior. We follow these rules from birth to death, trusting our tribe. For the most part it works.

There have always been innovators among us, the ones who rock the boat and bring changes. Travel by horses became vehicles with horsepower. Rigid conformity was forced to make room for civil rights. We are on edge when changes happen, but it became pretty nice to be able to cross the country in a few hours’ plane ride, rather than in a covered wagon for a few weeks or months.

Society thrives on a blend of routine work and changes brought by innovative twists in the road. What about the twists that change us? Life changes in an instant. A new baby is home, healthy in every way, until you notice that one or two normal milestones are missing. One day it becomes crystal clear that something unexpected is going on. One day a person is becoming an adult, living their best life. The next, an accident, virus, bad luck takes away some self care abilities.

You are now a caregiver.

You now need care.

Historically, troubles have been a family thing, self-contained, or with help from one’s church community. Sometimes, the "trouble" was something to be shunned. Isolating "abnormal" people from "normal" ones. Isolation can still happen to any of us. Even with many support options, there is difficulty finding and accessing them. In our modern system of support, there are so many agencies, government or private, that we can live our "normal" lives with limited awareness of a persistent, life long illness, injury or disability happening to "not me".

One evolving diagnosis is Autism Spectrum Disorder (ASD). I have known many people—family, friends, acquaintances—with a diagnosis of ASD. From this vantage point I see ASD and other developmental "disabilities" as being entwined with "normal" behaviors. I think of them as part of the fabric of humanity, conditions to learn from, not simply to be fixed. From developmental disability to cognitive decline, these are all part of the fabric of humanity.

Over the last few decades, the fabric of humanity has been coming out into the front yard, parlor, and no longer hidden in the attic, or an institution. Discussing developmental conditions is so normal now that it is hard to imagine how hidden they were a relatively short time ago.

Over time how we phrase and distribute support services has evolved as well. It can appear there are so many "services" that those in need must be receiving them, right? Qualifying for support is one of the first hurdles. Lines are drawn differently for a variety of needs. In Maryland, to be considered to have an intellectual disability and qualify for certain support services, one must have an IQ below 70. Maybe it’s time to redraw a few lines when connecting a diagnosis to support.

The biggest question in many families is "What will they do when I am gone?"

My husband and I, as well two other friends each raised a child with a developmental disability but without an intellectual disability, kids who "fell off the cliff" after aging out of the public school system. There are many components of our society that could help our kids live independently, if we could just put together the right combination. Matching support to need, combined with our current workforce issues has made many of us the home support service for our at-risk family members. We decided to do something, to try something different.

Kitsune, Inc. is our 501(c)3 non profit, with an education and life skills mission to address some needs—to take some pressure off. We spent a few years, pre pandemic, designing a model for independent living for capable, but at-risk people. This project is still in the planning stage. We also had the beginning of an idea for a resource database, the resource list we wished we could find when we were raising our kids.

This month we are beginning to publicize our Kitsune Life Skills Resource Database, KitsuneLifeSkillsdb.org. Have a look around, then drop us a line on our kitsuneinc.org/ContactUs form.

The idea is simple: A simple searchable database: Organization name, Domain URL, category of Service, services provided, and population served. The result is a focused list of organizations that meet the criteria of your search. The goal is to pare down the "helpful" but endless results from an internet search. The database is free to search, and no information is collected from visitors.

Our idea became a reality after Lesley Lopez, candidate for Congressional District 6, listened to the Kitsune mission and goals, then connected us to coders who could implement our idea. With the right solution, our years of pondering became a reality in about 8 weeks.

Jerry Alexandratos, founding board member of Kitsune, is running for the Frederick County Board of Education in our upcoming election.

Special Education is a focal point of our Board of Education. There are serious budget concerns for FCPS. We need people on the board who understand budgets, and know how to connect resources to students. Jerry Alexandratos, Janie Monier and Chad King Wilson Sr. each have personal experience with special needs family members. Each are long time advocates for special needs students. Chad King Wilson Sr. has a Master’s Degree in Special Education.

Frederic County’s Special Education Citizens Advisory Committee (SECAC) has sent a Special Education Questionnaire to each candidate. You can read their responses here: https://frederickcountymdsecac.com/boe-candidates-2024

In our upcoming Primary Election, please consider Lesley Lopez for Congressional District 6, and Jerry Alexandratos, Janie Monier and Chad King Wilson Sr. for Board of Education.

2024 is the Year of the Vote. Please make yours count.