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For the past few years, beginning with our battle involving the Department of Justice to defend my son’s civil rights as a disabled individual, our family, which normally lives with our amp set between 3 and 6, has been living with its amp on 11.
Since that time, we’ve had surgery, more surgery, chemo, radiation, and the worst possible loss we could have never imagined coming our way. We lost a man we loved with everything we had. We lost the love of my life. We lost the father of my children.
That loss has been followed by the drama that apparently follows a great loss, at least from what fellow widows and widowers have told me. Relationships have changed, some in ways we never could have predicted, some for the best, others for the worst. Some have changed by our choice, because it was the healthiest thing we could do. More change may still need to happen. It’s a weird time and grief is a strange thing.
But, we’re done with the drama. We have had enough.
If you can’t be kind, your comments won’t be published here. That’s why my comments are moderated. It is not because I fear the “truth” being told or don’t want bad things said about me. For Christ’s sake, bad shit gets said about me on a near-daily basis by my “anonymous” stalker on twitter, he/she attempts to post comments to other blogs, and send his/her hate in emails to other people. I truly have no control over what is said about me. Haters are gonna hate. That is not the point.
What I do have control over is this space, my sanctuary and haven for expressing my thoughts. So, rude comments get deleted. Honestly, I read the first few words, and then the comment gets sent to the spam folder, and the rude commenter’s IP address gets blocked. So, don’t waste the keystrokes if you can’t play nice. I don’t need you to agree with what I write or who I am, because I’m okay with both of those things. I write this blog to share my experiences. It’s your choice to read it or not. Might I suggest NOT if you don’t enjoy it or me? Just a thought. Lots of blogs exist on the Interwebs. I’m sure you can find one to your liking.
In our real life, the one we live off the Internet, my children and I will continue to avoid the drama llama as best we can. I’ll do my best as a mother to protect my kids from adults who tell them that doing drugs is an acceptable solution when they care for them. We’ll continue to figure out how to be a family of three, living together, even when people attempt to split us apart by offering a Utopia that doesn’t exist anywhere but fairy tales to a child who just wants her father back, but needs to learn how to live here, in this world, with this family that’s trying its best to put itself back together. We will rise from this life we’ve been living with our amp on 11, and get back to a time when we didn’t ride a roller coaster every day, and we had peace instead of drama.
Image by Steve Rhodes via Flickr
I haven’t talked about politics here in a long while, but I wanted to take a moment to give you all a link to a great resource for information about what’s happening in Iran right now. It’s some of the best coverage available, both from the people on the ground, and from professional journalists.
Truly amazing footage, commentary from journalists, bloggers, raw feeds from Twitter interspersed with articles about the events as they unfold. It’s written in a blog/diary format. So, it’s easy to find the most current information. Text that highlighted in green signifies tweets written by Iranians.
I urge you to utilize this is a resource for your information gathering. I don’t necessarily recommend watching all of the videos or images of the violence unless you feel you need that information to understand the situation.
I do not know all of the most effective ways to support the Iranians, but I do not the kind of support I am able to provide, which is the dissemination of information. That is what I am trying to do here with the link to Andrew Sullivan’s work at The Atlantic. Hopefully, from that point, you’ll be able to figure out what you feel called to do to help our fellow humans on this planet.
Please share any ideas or suggestions you have in the comments section. I’m always looking for new resources I can pass along to my readers.
TS Awareness Month is May 15 - June 15, 2009
Bayside, NY – May 15, 2009 - From May 15 to June 15, the Tourette Syndrome Association (TSA)—the only national, voluntary health organization for people with Tourette Syndrome (TS)—joins the hundreds of thousands of families affected by TS to help raise awareness of this baffling disorder during National Tourette Syndrome Awareness Month.
Marked by involuntary body movements and vocal sounds called “tics,” it is estimated that some 200,000 Americans have the disorder, with millions more manifesting associated conditions. National Tourette Syndrome Awareness Month, which was first established by TSA in 1997, provides an opportunity for the TSA, its chapters and others in the TS community to educate the public about this much misunderstood and misdiagnosed condition.
Throughout the month, local TSA chapters across the country will work to raise awareness, increase education and reduce stigma associated with TS. One such event is Government Relations Awareness Week from May 25 to June 1. During this week, TSA encourages its chapters and families to hold district meetings not just with elected officials, but also with community leaders to raise local, state and federal elected officials' awareness of issues impacting families living with Tourette Syndrome.
Some of the dozens of awareness events taking place across the country organized by national TSA Chapters include:
Georgia Chapter: Twitch & Shout Adventure Week, May 31 – June 5, Cape Twin Lakes in Winder
New Jersey Chapter: TS Day, Golf Tournament and Dinner, 12:00 p.m., Old York Country Club, Chesterfield
Long Island, NY Chapter: Family Fun Day, May 30, 1:00-5:00 p.m. at Jericho High School
Texas Chapter: Jazz Fundraiser, “An Evening of Jazz -- I Groove to my Own Move." May 15 in Dallas
Pennsylvania Chapter: Annual Legislative Breakfast, May 13 at 10:00 a.m. in the Capitol Building to show appreciation for the work of the state’s legislative leaders and promote awareness about TS
New Mexico Chapter: Annual Picnic, May 30 at 12:00 p.m. at Roosevelt Park in Albuquerque
Utah Chapter: Various school presentations throughout the month and a contest for Chapter T-shirt design
In addition, as part of the ongoing program partnership between TSA and the National Center for Birth Defects and Developmental Disabilities at the U.S. Centers for Disease Control and Prevention, now in its fifth year, a dozen professional education and outreach programs for medical, school-based and allied professionals, including sessions on Comprehensive Behavioral Interventions for Tics (CBIT) will take place during TS Awareness Month, including programs in Huntington, WV; Tulsa, OK; Lawrence, KS; Ocean City, MD; Keaau HI; Oakley, KS and Goldsboro, NC.
Marked by involuntary movements and vocalizations called tics, Tourette Syndrome is an inherited neurological condition frequently misunderstood and misdiagnosed, affecting more than 200,000 Americans. Founded in 1972, the national Tourette Syndrome Association celebrates 37 years of service to the TS community worldwide. As the only national, voluntary health organization for people with TS, the TSA has a three-pronged mission of education, research and service and directs a network of 31 Chapters and more than 125 support groups across the country For more information about Tourette Syndrome, Tourette Syndrome Awareness Month or any of the events listed, please view additional pages at the Tourette Syndrome Association site.
Media/Press Inquiries: 718-224-2999, ext. 236; email: email@example.com
[My apologies for not getting this announcement posted sooner. I think Hubs’ chemo brain is becoming contagious.]
Mr. Lumpy was a benign little bastard, and the Dept. of Justice is moving forward with Bug’s case.
Image by svanes via Flickr
Thanks to Gwendomama, I may actually be able to sleep tonight. She posted about Cindy coming up with the brilliant idea to donate $5 to Planned Parenthood...in honor of Sarah Palin. The kicker? A card is sent to Sarah Palin letting her know about the honorary donation made in her name.
Think of the joy you'll bring. I made my donation. Couldn't make it quickly enough, really.
This donation is on behalf of or in memory of:
Name: Sarah Palin
Send acknowledgements to:
Name: Sarah Palin
Address: 1235 S. Clark St.
Arlington, VA 22202
Gwendomama suggested using the McCain/Palin campaign headquarters address (noted above), which I think is fabulous. Who knows when Palin will be able to swing back by Alaska to check the mail box.
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We believe our son was suspended from school because of his disability.
I have waited nearly 10 months to type those exact words and publish them here.
Bug has Tourette Syndrome. This manifests in a variety of vocal and motor tics. Most of what he struggles with, we never see. The internal flexing of muscles, the tiny movements and imperceptible sounds.
He also experiences the waxing and waning of more noticeable tics. These have included everything from complex variations in his gait--having to march in place for 3 steps before being able to proceed--to screeching sounds so painful they make him hoarse.
We believe he was asked to leave school because his disability wasn't quiet.
Because it was deemed distracting.
Unfair to others.
Hard to put in a corner.
Now, Bug's voice is being heard. We hope that through his battle, the voice of others who struggle with invisible disabilities will also be heard.
Our son did not get to choose his disability. (Short of inflicting an injury on yourself, I don't know how you would get to choose your disability.) Bug did not get to pick something familiar or readily apparent. He got stuck with Tourette Syndrome. Luck of the draw? Genetics? Either way, it's a neurological disorder, often associated with OCD and ADHD. Nice, eh? Fun. A great way to make friends, blend in, make your life easier. Not exactly.
We are thankful that we live in a country that has seen fit to legislate common decency, because not everyone sees fit to accommodate those who are different, those who make us uncomfortable, those who make us change the way we think about what's controllable.
We are hopeful that we will see true change come about as the result of what happened to Bug. While it has been a horribly painful experience for our family, we want nothing more than to make things better for the next child, because there will always be another child.
A child who did not choose to have a disability.
A child who did not choose which disability to have.
A child whose voice may not be heard.
That child deserves a better world.
That child deserves to be welcomed.
That child deserves to be where other children already are--in schools, stores, child care centers, theaters, and playgrounds. That child deserves to be part of everyone's world--where everyone has a right to be.
We know that if enough of us stand up, speak out, and advocate for these civil rights, things will get better.
If you would like to learn more about Tourette Syndrome, including how to accommodate a child with Tourette Syndrome in your classroom, please visit the Tourette Syndrome Association website.
DisabilityInfo.gov: Technology: Grants & Funding
Grants and funding for a variety of purposes related to assistive and adaptive technology exist for both public and private, nonprofit and for-profit entities. Technology is just one avenue for increasing diversity in places of public accommodation: child care centers, private schools, parks, zoos, libraries, museums, restaurants, hotels, etc.
As we continue our journey to make the world a better place for Bug and other children with invisible disabilities, like Tourette Syndrome, I thought I'd share this clip from HBO Family's Emmy-winning documentary, "I Have Tourette's, But Tourette's Doesn't Have Me."
If you'd like to learn more about Tourette Sydrome, there are a number of great books, but this DVD is probably the most valuable resource for families, educators, medical professionals and the general public. Check your local library for a copy or pick one up from the Tourette Syndrome Association.
Knowledge really is power.