Well, this question is one I ask myself often. Although I have a feeling at times of clear connection to those who frequent my Facebook status updates with awe and praise, I realize, when push comes to shove, that I am indeed no more than a zoo attraction. Those peering into my cage, stating their observations of beauty, strength and whatever adjectives they find suitable for the tiny glimpse they witness. Emotional projections of how they would feel in my skin and how I must feel. Because I am easily agitated, passionate, difficult to understand in mere human language, I remain untouched, gawked at and slightly frightened by the passive curiosity those on the outside display. Some attempt to imitate my behaviours, or join my coping ventures, only to find, they still view me as separate. I too view them as such, but mainly due to the walls of this cage we are entrapped in. Although I am rare and perhaps endangered, actions like these seem to not stir action but surprisingly a more complacent acceptance. 'What is being accepted?' you may ask. My answer is this: The clear glimpse you imagine you have into my life, which has many forms throughout the day, the week and the lifespan, is only that: a glimpse. To watch us in a bubble and name us brave, happy or even alive is like basing an entire religion off of one moment...
Our wildness has been taken, by those who seek control, money or enlightenment thru walls, boxes and rules. And yet we are seen as some anomaly, or genetic fluke. My life is a direct product of the level of acceptance embraced for comfort's sake. And if you view us as even slightly uncomfortable to watch, there lies the core of the issue. Here we drape, over tree branches, listless, helpless yet still determined to meet your awe-stricken eye gaze with a tear in ours saying, "Why are you just standing there? Let us out!"
Hello and Happy Wednesday! Welcome to all the new Guru V People!
Some lessons from my Gurus (my kids) that I have learned from them and their tremendous energy:
1. Go Big! Be Loud! Feel Everything and then...
2. Forgive easily. Move on. Stay in the moment. Don't dwell on the last moment or...
3. You may miss all the LOVE, BEAUTY and Dare to be Great moments in front of you.
4. Never accept someone else's idea of what is best for you and never impose your idea of what you think is best for someone else...even if you think you have more capacity to...
5. Life is a gift, given to the person living it. Everyone is your teacher during this gift...Pay attention and LOVE.
An awesome mom and a super amazing friend wrote this regarding her son:
I am struggling with showing grace and forgiveness. Brady has been hurt by so many, many who attended Oly's rally today. I feel angry. Love? Acceptance? I'll be interested to hear how my son was treated today, by some of those very kids. My guess is that "diversity" and "acceptance" doesn't transfer to the kid that "high-fives" everyone so annoyingly everyday, or rudely interrupts conversations everyday because he just wants to be your friend and doesn't understand how. Brady has Autism, it is labeled a disability for a reason. His brain does not process things in the same way. This causes him to have an extremely difficult time with communicating and relationships. What does process things the same way is his heart. "Turning your back" on Brady and others like him is not showing "love" and "acceptance." Mocking his naiveness for your personal entertainment does not go unfelt. Don't be fooled by Brady's beautiful smile. He puts that on everyday because he says, "people don't like negative people, you told me that, mom, I pretend to be happy so that people will like me." Brady wishes he was dead. That smiling boy you turn your back on everyday, wishes he was dead. "No one is mean in heaven, mom." Please, Oly students, remember how much power you each have in your words and actions. How many Brady's do you turn your backs on everyday? Live up to what you presented yourselves to be today. And if you find this to be uncomfortable to read and embarrassing to your school, you just experienced a very small dose of what my son and many other kids experience everyday.
My proposal and response:
Hey Olympia High School, Olympia School District, students and faculty and surrounding areas...OUR KIDS ARE AMAZING and we have a 'DARE TO BE GREAT MOMENT.' My sweet friend Lisa...(awesome mom of Brady mentioned above in her post from Facebook - the rally she speaks about is a counter rally against the Westboro Church who made their way to Olympia because WA State is about to say YES to gay marriage). Lisa, I felt the way Brady felt last week. I actually said it out loud. I thought for a second in my despair that I would be better off dead because no one cares anyway...this is a very very scary place to be as I don't consider myself to be negative or depressed, but this is how the lack of care for our family has effected me deep within my soul and psyche. It hurts to be excluded and ignored...IT IS A FORM OF PASSIVE VIOLENCE that causes violence within societies, governments, and families. I sometimes feel very frustrated with my son, justin, who cannot help that he is autistic and I feel abandoned by society, public schools especially. My daughter, who also has autism, but is more verbal like Brady, is often a victim of passive violence as she is ignored or teased...even by teachers. Next year both she and hopefully my son, whom we have had a tough time getting any open acceptance in public school setting for, will be joining you from Massachusetts and I would like for us to engage in some actions that will create inclusion, love and peace rather than pain. Please read this and join us. PASSIVE VIOLENCE IS PAINFUL AND UGLY, TRUST ME. WE HAVE ENDURED FAR TOO MUCH OF IT AND IT IS DESTROYING FAMILIES EVERYWHERE, FROM THE INSIDE OUT! I would like to start a Guru V People Victory over Violence project. Will you help?
As I venture into the world of advocating for more families across the US, I am stirred to not only conduct a webinar about who to talk to when in public education dealings, but also to write this list with FIRM commitment and a strong urgency to parents:
A. If it is not written, it did not happen. DO NOT SPEAK TO PEOPLE AND EXPECT RESULTS LEGALLY. Accept and have as much written communication with specifics as humanly possible (dated with people and places identified).
B. Read your procedural safeguards and if you are told "that is our policy" ask where it is written in the Procedural Safeguards. If you do not know what this document is then ASK for it...then date it and write down who gave it to you, where and that you had to ask for it.
C. The IDEA law is the law that gave you the IEP. Individuals with Disabilities Education Act and Individual Education Plan. FAPE - Fair and Appropriate Public Education and LRE - Least Restrictive Environment are acronyms from this law.
D. The order goes:
1. RECOMMENDATION for Special Education Eval. (needs parent consent)
2. EVALUATION (parent can reject and ask for an independent one at the district's cost)
3. RECOMMENDATIONS (In Evaluation...the things the IEP should be based upon as well as current levels)
4. WRITING THE IEP WITH THE TEAM...PARENTS SHOULD BE 'INVOLVED' IN THE PROCESS (ie parents present and feeling heard.)
There should 3 things given to the parent in
a. Parent Recommendations and Concerns letter...I call the 'hopes and dreams' page.
b. The district's Procedural Safeguards should be offered to you, each state regulates this policy differently so check your state board of ed website or call them to find out the policy.
c. A written notice with IEP team members names, contact info and the meeting agenda. IF YOU DO NOT GET ALL THREE then ASK for them.
5. PLACEMENT IN THE LRE - Least Restrictive Environment where the child will receive the highest level of progress in all IEP goals. IF the goals are social/emotional and communication based, think about where the most progress could happen. If there are no general education peers, how will the social/emotional and communication goals be met? These are the sort of things parents should pay attention to and consider whether the school is suggesting the LRE (Least Restrictive Environment) or the path of least resistance...there is a huge difference.
If you need help with these terms, procedures and/or acronyms then the district is required by law to explain them to you, in your own language and UNTIL THIER FACES GET BLUE IF NECESSARY. Please, hold them accountable AND NEVER ATTEND THESE MEETINGS ALONE...AND...LAST BUT NOT LEAST...ask who the official note taker for the district is in each meeting and ask for a copy of the written notes before leaving the meeting. THIS IS YOUR RIGHT BY LAW.
xoxo go get the best for your kids!!!!!!! peace and love, zjen
A mom with passion, action and an inclusion revolution on her mind shares moments, mantras & wisdom gained from her autism adventures. A single mama of two children on the spectrum, whom she considers
Guru V People
Please know that I am a poet and a scientist...so how I deal with discomfort is I ask questions, I manipulate words and rhythms and I dance around issues that I feel strongly about. When I use the word dance, please know that I am no ballerina...I prefer sharp, awkward maneuvers that express my passion. So when I dance around issues, there is no guessing how I feel about them...take nothing personal but please