Kevin, now nineteen, is in a transition program in his home town. The program has the students taking a bus two days a week to City College and the other three days they are in class or doing other activities in town. Kevin is taking a wonderful course at the local college called College Success. He’s learning to evaluate his strengths and weaknesses, set goals, and discover what he wants. One of his goals is to make friends.
I was heartened when Kevin in his self-discovery workbook wrote this week “I am lucky to be autistic.” That was validation for what I and so many others in the neurodiversity community are trying to instill in our children.
In contrast to the two days he spends at City College, I don’t really know how Kevin spends his time in the transition classroom. Yesterday Kevin wrote this in his journal.
My heart aches for Kevin. He wants to make friends but needs help. Often times people discount Kevin because he is shy and afraid of rejection.
For obvious reasons we don’t allow Kevin to play violent video games at home. We’ve been asking for social communication facilitation for Kevin since the first week of school. Our emails up until yesterday have gone unanswered.
Yesterday Kevin’s note created a whirlwind of activity at his school as they tried to cover their bases. Previously unanswered emails are now answered, investigations are under way, we have a meeting scheduled this coming week to address our concerns.
When Kevin graduated last Spring, I breathed a sigh of relief. The special education experience has been a roller coaster. Each year it was a roll of the dice what type of team we would have. Would the team be passionate and creative or would they be there only because of the pay check and the benefits?
Special Education is not about funding. It’s about the quality of people on the team. Creative people can make exceptional programs with little or no funding.
As Margaret Mead states “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
In Kevin’s City College class, he is learning about the Maslow triangle. At the base of the triangle is survival. At the top is self-actualization. Not many people live at the top of the chart. The Art of Autism project’s ideal is that all the participants will operate at the self-actualized level. I especially wish Kevin’s team consists of self-actualized people. This means that they are passionate about their job and their creativity flows freely. They don’t just put the hours in and get a pay check. They do the job for the love of the students. It is a joy to be part of a team who has a common vision and are there for the right reasons.
Over the years, I have asked the school district, wouldn’t it be great if you could be known as having model Special Education programs? Yesterday, I asked the Director of Pupil Services, wouldn’t it be great if your district could be known as having a model transition program?
The Art of Autism has written articles about strength-based programs over the last year. All of these programs are run by self-actualized people who have a passion for what they do. Their passion often times is inspired by a child or a sibling. Autistry Studios in San Rafael run by parent Janet Lawson has a stellar program that is project based, Exceptional Minds run by parent Yudi Bennett has a program whose students graduate with Adobe Certifications, Hidden Wings run by parent Jim Billington has hired exceptional staff to teach students a wide variety of strength-based classes. One program that we’ll do a future blog on is the project-based SEEDS in Phoenix run by Mary Ann LaRoche who was inspired to start her program because of her sibling Paul Foti.
Last week I received two books for review in the mail. Both are on neurodiversity by the famed Dr. Thomas Armstrong. One of them is titled Neurodiversity in the Classroom. The book offers a panoply of suggestions for computer programs and applications that can be implemented for students to achieve success, future career paths, networks of human resources inside and outside schools, and modifications of school environment to allow for seamless inclusion of neurodiverse students.
Yesterday I spent part of the day documenting our problems this year. When I analyzed the list the major problem seems to be poor communication. Timely and honest communication is essential for good programming. The school and home need to be on the same page.
One of the biggest hindrances to open communication and doing what’s right for the students is fear. Kevin has been part of his school district for twelve years. Many times we’ve had the opportunity to sue the district or report them for compliance issues. We value open communication over power plays.
As parents we want what’s best for Kevin. That happens when everyone on the team is treated with the dignity and respect they deserve. Over the years I’ve witnessed teachers undervalue and demean para-professionals. It always causes me alarm. If they can demean an assistant, they can demean my son. I’ve also been on teams where the aides have been told they’re not to talk to the parents. This is because the people in charge are afraid the aides will tell us something that will make the school liable. An atmosphere of fear and distrust creates a non-functional team and the person who suffers most is the student. An ideal team is one where everyone who works with the student is present and respected for their honest input.
What do I want for Kevin’s transition program? Yesterday I wrote this vision statement.
“Kevin enhances his social communication skills, makes friends, widens his areas of interest and thrives. Each day he participates in healthy activities that makes his body strong. He develops his own goals and furthers his independence. He discovers and unfolds his passions. He has a team who are passionate about their jobs who bring new ideas to the class each day that stimulate Kevin and other students to achieve their dreams.”
I envision Kevin and his parents being an integral part of a functional team that can help Kevin and other students make their dreams come true. The team will put the needs of the students first.
We are all here to serve.
The lump in my throat enlarged and I caught my breath as I read Kevin’s letter. I want to cry and scream all at once. Kevin’s words, and your article hit home in a powerful way. Kevin’s experience is not isolated and this makes me sad. It plays out for too many everyday all over the world.
Debra, you are right about the quality and heart of the educators, and that it is not necessarily the size of the budget. There was a team meeting for my son Taylor yesterday to address versions of the same scenario he experiences as an adult in his independent living situation. His issues also include health, safety and budgeting issues. I fear greatly our family’s reliance upon a “system” of supports that means well, but is failing at this time to meet his needs. I also fear for his lack of understanding and responsibility that contributes to the problems, but for which they can only say “Taylor needs to do better.” All ironic because while I work with others on social, life and transitions skills, it is more difficult to work with one’s own adult child – and for this I feel tremendous guilt.
I want to respect my adult son. His independence and freedoms are very important both to me and to him. I’ve given him and them (his support team) three months to create, implement and find successes in a new game plan. If by the New Year I do not see dramatic changes, I will be seeking a limited conservatorship and take (back) certain areas of overseeing Taylor’s life for myself. For our family, this would be drastic – but possibly necessary. Autism is for always and ever while we breathe.
Thanks Keri for your note about Taylor. Let’s vision a could program for him where his needs are met.
Great article Debbie!
Will post it on our website and facebook!