My Son Is Quite Able: Riding BART

When my son was in fifth grade he was asked to leave his private school because of his disabilities. In the middle of a school day. With no warning. With no plan. Some of you will find this deplorable. Some of you will think they had a right to ask him to leave because they were a private school.

After an investigation by the Department of Justice into whether or not the school violated my son's civil rights under Title III of the American's with Disabilities Act, the case was closed without a finding.

What I do know is that today, on his first day at a school he selected, my fifteen-year-old son, is a better person for having been asked to leave that school.

Why?

That day was a turning point for our family. From the day the school sent my son home he started homeschooling.

We didn't know if it would be a temporary situation or not, but we knew it was the right thing to do for him at that time. It turned out to be the best thing we could have done to lessen the stress he was experiencing there—stress we didn't fully appreciate until he was outside the situation.

Toward the end of the lengthy and often ugly legal process with the school, before the ruling came from the DOJ, my husband was diagnosed with cancer. Since we were homeschooling, my son had the gift of spending my husband's final year of life at home with him. We had no way of knowing that was how life was going to play out, but it worked out that way, and it was a blessing. I am thankful every day that somebody perceived my son's disabilities the way they did or he would have missed that time with his father. And I am so glad his father got that time to see his son happy.

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Making the choice to defend our son's rights was a process that brought us closer together as a family. We regularly checked in with each other and with our son to make sure we wanted to continue the legal process. As soon as one person wanted to stop, we agreed we were done. Fortunately, the DOJ took over the case, and it was out of our hands. We never intended to pursue a civil case. Our goal was to make things right for other children for the future. We didn't see a civil case achieving that goal. Our daughter was an amazing witness when the DOJ came to our home to interview us. She was fiercely protective of the truth and her brother, which hasn't always been the case in their relationship—having a sibling with special needs can be stressful sometimes, but she wanted to make sure it was clear to the attorney just what had and had not happened since she was actually present in his classroom.

And today, on his first day of school, my son rode BART by himself. He also packed his own lunch, got himself dressed in the clothes that he washed, and ready for school on time. He attended his brand new school for seven and a half hours. He was calm. He was confident. He had a great day at school, and he can't wait to go back tomorrow.

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If you didn't know he had Tourette's, you'd be hard-pressed to tell. In fact, even the people who live with him have trouble spotting his very rare tics. As for the Asperger's, well, I just think of that as who he is. I don't even know that I'd be able to separate him from the things that would define his position on the spectrum, nor would I want to. After fifteen years of him being him, I am so accustomed to who he is and how he works, that I rather like his wiring. Our world needs him. Somebody else's oversight of his awesomeness on that day in October of his tenth year was so very clearly a lucky day for the rest of us. They missed out on having the opportunity to watch him grow and learn these past five years. We didn't.

Guess what, world: he is able! Very, very able. Don't let that slip past you this time or y'all might miss out on another five years of watching him in action.

 

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I love you, Bug. I wish Daddy were here to see this. He'd be so incredibly proud of you.

On That Note: Saying Farewell To The Drama Llama

LlamaImage via Wikipedia

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.

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The Family Tard Cart

If I could afford it, this would be our family car.

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Instead of shirking away from the word retarded, we embrace it. Steal it’s power back.

If this was our car, we’d paint “Family Tard Cart” on the side in gothic letters and cruise around town with pride.

Why? Because that’s who we are. We’re all special. And we rock. We have acronyms and long words after our names like ASD, TS, OCD, ADD, and Depression, and Migraine, and Fibromyalgia, and we’re crazy homeschoolers, too. Oh, Lord!

I think it’s high time the special needs population reclaimed the words used against them.

It wasn’t that long ago that “queer” was an insult. Now there’s a Queer Nation.

Not so many decades ago, my son would have been locked away, considered possessed in some cultures. My daughter would have been thought too nervous and fragile. I would have been kept on the upper floor, never seen, and seldom referred to. Now, thanks to modern medicine, and education, we roam free. Scary, huh?

There’s no reason our short bus has to be ugly. There’s no reason for us to hide in shame. There’s no reason for us to let words like “retard” belong to our enemies.

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PSA: Tourette Syndrome Awareness Month

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: tracy.flynn@tsa-usa.org

[My apologies for not getting this announcement posted sooner. I think Hubs’ chemo brain is becoming contagious.]

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What's It Like?

As we continue our advocacy 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.

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Making Wrong Right: Tourette Syndrome Is a Disability

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.

I feel like I can type them now because our son's case has been accepted by the U.S. Department of Justice as a possible violation of Title III of the Americans with Disabilities Act (1990).

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.

Difficult.

Unfair to others.

Uncomfortable.

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.

Accommodated.

Understood.

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.

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PSA: Disability-Related Grants & Funding

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.

Link: DisabilityInfo.gov: Technology: Grants & Funding.

Read More

What's it like?

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.

Read More