No Child Left Behind!
In April 2003 and again in November of 2006, I started my quest for Partnering to Create a Brighter Future for Adults on the Spectrum.
I set out by seeking input from families and professionals in order to design the most Comprehensive Permanent Living Model that would greatly improve my son’s quality of life and enable him to have a bright future.
The number one question on everyone’s mind was ... do we include all people with varying disabilities or do we create an exclusive Autism Model? This question became a heated debate across the United States.
The other heated discussion that began to surface was the debate of those who believed that Vaccines caused Autism versus Genetics. It became very apparent that there was a divided line within the Autism Community.
I was so overwhelmed by all of the opinions and finger pointing that I had to speak up and state, “This is not about placing blame. We need to eliminate all the politics and concentrate on designing programs that will help our children become successful and productive adults. We need to focus on “The Big Picture ... our children‘s future.”
What I learned after speaking to hundreds of parents and professionals across the U.S. was ... One Model was NOT the solution for all children with disabilities. Our children are so different that it would be tragic to think that one Model could possibly address all of our children’s varying needs.
So, what do I believe is the politically correct design ... “Several Very Different Models.” These Models should be designed based on varying levels of interests and capability coupled with I.Q., regardless of disability and diagnosis.
I designed my Model based on understanding my son’s capabilities; bright, behavior issues, computer savvy, huge vocabulary, wonderful writing skills, great sense of humor, loves music, and is socially young (has difficulty interacting with others but seeks friendships).
I am also a true believer that “No Child Be Left Behind.” Designing a Eco-Friendly Planned Community with a Organic Farmstead and a Gluten-Free/Casein Menu will not be for everybody. But, I didn’t design my Model for everyone, I designed my Model for my son.
If my son was placed in a Permanent Living Model where his peers were low-functioning, non-social, and incapable of building relationships, I would question my son’s quality of life and his future.
It is imperative that Model Design as well as Placement, focus on the varying needs of each very different and very special individual.
“Family Model” Group Homes vs. Planned Communities
It takes a compassionate Community to embrace and accept our kids for who they are. I am constantly challenging the Government, DDS, and various Regional Centers when they state that placing Alex in a “Family Model” Group Home (TEACCH) within a typical Neighborhood is the right solution for his future?
My twins just turned ten-years-old and it has become painfully clear that our Community accepts Jay and does not embrace my son, Alex. So, are “Family Model” Group Homes the answer to my child’s future?
Not for my high-functioning son who I know will be a successful working and fairly independent adult someday. However, for the lower-functioning adult whose mental capabilities are those of a young child, I could see how this would work. Again, one solution is not the answer for all people with disabilities.
Well over a year ago, the Coordinator at Prader-Willi Homes of Oconomowoc in Wisconsin and I discussed my Model and I asked her if managing their homes that were spread out in the community was difficult versus managing a planned community of homes and having a Community Development Center serving as its core?
She thought the Planned Community made a lot of sense. I also asked if her residents had a local Community Center where they could all meet, swim, have socials, and she loved the idea and was going to look into contacting several Centers in the area to ask if they would share their facility with them.
I recently spoke to a man who has a child with brain injury. He was interested in purchasing three homes for other brain injured adults. I asked him to check out my website for ideas.
He called me back and stated, “Your Model is a large Planned Community.“ I replied, “A Planned Community can also be small, three homes with a small Organic Garden serving as the core and anchor of the Community.
Planned Communities can be large, medium or small. They can be Dorms with a shared Community Development Center. An Apartment, Condominium, Duplex, with a Shared BBQ, Pool, and Recreation Center, Cottages with a shared common area, or all of the above.
Tight-knit Planned Communities where families who have children with varying disabilities can come together, help one another, and build lifetime friendships “is the concept” not the size of the Community.
Communities that relate to our children, accept them with open arms, and who are compassionate and caring human beings. I cherish my childhood and remain close to my former neighbors and want the same for my son.
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