January 21, 2009

Starting Over in Obamaland

It is 12:40 P.M. on January 21, 2009. Ray and I have just watched the inauguration of Barack Obama as the 44th President of the United States. It was a moment so intimate that neither my husband nor I wanted to share it. We chose the quiet of our home, with its memories and echoes of children past and present, as the place to watch and listen to the emergence of a new generation of leadership. We have been horrified and aghast at what has become of the country we love, watching Obama with tears and a lump in our throats. Our 32 year old son talks about the Mayan doomsday clock that ticks toward 2012. The Mayans, with their unprecedented mathematical genius, calculated 2012 to be the end of the world as we know it—or the end of the world period. For if we don’t work to fix the problems we face through volunteerism, the mission of Each One, Teach One, it will be too late. Each one of us must take the responsibility to engage, to find a way to improve the life of another because the need is there, and we are the only ones to do it. It is not a matter of faith. It is a matter of survival. And out of all of the complexities and needs we face as a nation, special education is low on the list of priorities. If our children and families remain abandoned for awhile, it will not change the economy and it will not end the Iraq and Afghanistan war. If special education is to survive, we must be ready to mend it ourselves. President Obama will do what he can, of that I am sure. But while we wait, we must each decide what we can do to improve the life of one more child- who is not our own.

What can we do on a person to person basis that does not involve schools or government?

Here are some ideas.

1. Make-A-New-Friend. The biggest area of children’s need in special education is social skills and the experience of friendship. In the beginning of volunteering to help with this, it is safer to work with children having similar interests. I’m involved with providing free tutoring one night a week. It turns out that the children who participate have some similar interests and needs, though they never met each other before tutoring started. Through shared experiences and time, they now laugh and joke and giggle while they learn for 3 hours each week. What was needed was a safe place (my house), and adults with a sense of humor, patience, and literacy. There is no reason this cannot be done by anyone willing to try. Many children are lonesome and without friends, or the right kind of friends. Many are in dire need of tutoring or other support services. Establish some general rules, involve their parents, and start.
   
   
2. Develop a local barter system to swap time instead of money. Barter systems work best when there are rules to follow and a penalty for breaking those rules. 32 years ago, I worked out what was called a Barter Contract. Regardless of the experience or background of those involved, the only thing counted was hours. One doctor’s hour was worth the same as one waitress hour. This idea permitted the first parent information center in America to work without public funding from 1978 until 2005. If the barter was broken, the person who defaulted paid a specified amount into the Barter “kitty”. Expenses, such as gas, tolls, etc. were reimbursed. Young families with disabled children, especially those with autism and other developmental disabilities, are especially vulnerable now do to the economy and lack of publicly funded resources. There is no reason that a barter system can’t be locally established in a community or neighborhood that trades baby sitting, shopping, clothes, toys, skills (cleaning for cooking, haircuts for alterations on clothes- the list is endless).
   
   
3. Preschool play-groups. One of the largest areas of need is the improvement of pre-k social experiences for young children. Services and programs have been drastically reduced. Many programs that are there are poor. If you are the parent or grandparent of a special needs pre-k child, why not invite 2 more over and let them play for an hour or more. Structure the time and don’t have more children than you can supervise or give personal attention to. Let me share a story to encourage you. Last week, I was involved with a pre-k play group. One year ago two of the children had been diagnosed with autism. Last week, BINGO was playing with a rock and roll beat as children danced in the room. One parent whispered for me to look. The two children diagnosed as autistic were holding each others hands and looking into each others eyes as they twisted and turned to the beat. If there had only been a camera around! There is no reason that we as Americans cannot make this happen thousands of times each week without costing anybody anything.
   
   
4. Cross-your-culture. The election of Barack Obama has made us aware of the richness and importance of culture and cultural differences. Yet, we have yet to discuss the cultural elitism within the disability spectrum. Children with learning disabilities are generally average to above average in intelligence. Their families want them to associate with “regular” looking kids, and not FLKs (Funny-Looking-Kids). This is understandable. None of us wants them to function at a lower level than they are capable of. But that does not mean that they should avoid the retarded and the deformed because it can lower their confidence and self-esteem. Children with down syndrome and autism have unique cultures as a result of the personalities and attributes of their disabilities. Many of us have heard of or experienced the Deaf Culture, families who do not consider deafness a disability, but a culture with its own language and social customs. People who are bipolar share jokes and common experiences with each other. The way special education is now structured encourages division and not the things that all families have in common- the Individuals with Disabilities Education Act. Children whose faces are asymmetric, who are without language, without the ability to control much of their bodies, are generally ignored by those with higher functioning disabilities, including giftedness. They seem scary to those who do not understand their culture. Such separations of handicaps and diagnoses enabled the past 30 years to leave us essentially where we started in special education. As difficult as it may be, and as frightening as it may seem, we need to leave our comfort zone and become our brother’s keeper. Cross-your culture of disability. Learn about another one. Befriend a child from that culture. If we’re willing to discuss Africa and Turkmenistan, how is that that we’re not willing to look inward at our special education population in order to improve it? This is not about Inclusion or political agendas. It is about how one family can help another one beyond the school day. The ability to develop comfort in the face of differences is what makes special education special. And it is what makes America- America.