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.

IMG 8270

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.

IMG 1697 2

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.

 

DSC 0876 1

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

The Family Tard Cart

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

cool_20short_20bus

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.

Read More

Death Paneling Is So 1974

State of Healthcare

Image by califmom via Flickr

Are you confused by the healthcare debate? Do you think Sarah Palin is going to panel your den in death? Are you convinced Obama is growing a Hitler ‘stache? Have you started confusing communism with socialism? No worries.

I found a stack of napkins that explains everything. Seriously.

And if the presentation goes too fast for ya, slow it down, rewind, play it again. I did. (Mostly because I liked the drawings.) You may need to do it for other reasons, and that’s okay too. There’s room in this big nation of ours for all kinds.


Read More

The Changes in Iran

Neda's photo - June 20 Iran election protest i...

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.

Andrew Sullivan The Daily Dish at The Atlantic

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.

 

Read More

I Am A Writer

The folder of newspaper web offset printing pressImage via Wikipedia

When I was meeting with my new doctor last week, I was asked to state my occupation.

I paused.

A long pause.

Which occupation? Do you have room for a list? Do you mean an occupation that would sustain me financially were I not so fortunate as to have a husband who is the major breadwinner in our family?

In my head, I gave the Occupation Wheel a spin. This time, it landed on Homemaker. (Shh...don't tell anyone about the house cleaner.)

The time before that, it landed on Educator. (Hey, we homeschool. It counts.)

And, the time before that, it landed smack dab on the one that is the most difficult for me to say in a confident tone--Writer.

Why is that the hardest one to say? For me, it boils down to having to explain what I write and where I write.

I do not write books.

I do not write print media.

Since most of the asking about my career is done by people at least my age, but often older, this means that explaining is required, and I'm not always in the mood to explain. My former career as a Radiology Information Systems Project Manager was easier to explain. Honestly.

The problem with me copping out of telling people that I'm a writer, that it is my profession, that it's what I'm paid to do (however minimal that pay may be), is that I discredit the value of my work AND the work of my fellow writers. Because that's what we bloggers are...writers.

We write. Some write well. Some write really well. Some of us try to write well, and fall short. But damn it all, we keep writing.

So, for all the mainstream journalists who think bloggers don't deserve the same consideration as your perceived peer group? BZZZZZT! Wrong answer. Our work is ours, not yours. You need to give credit where it is due. Give credit to the bloggers, the authors, the WRITERS.

If you feel the same, join the crusade started by Don Mills Diva, carried on by Mr. Lady of Whiskey in My Sippy Cup, and joined by yours truly:

Read More

Front of the Class

Hallmark Hall of Fame

Image via Wikipedia

One Last Reminder!
to Tune-In
This Sunday, December 7, 2008
as Hallmark Hall of Fame Presents
"Front of the Class"
on CBS
9:00 pm EST (check your local listings to confirm)

(If setting your DVR – remember to extend the recording time as the football game may go overtime)
An Inspiring, True Story about a Young Man's Triumph over Tourette Syndrome
Based on the Life of Long-Time TSA Member and Friend, Brad Cohen

Reblog this post [with Zemanta]
Read More

My Invisible Disabilities: Part 1

MigraineImage by makelessnoise via Flickr

I've talked a lot about my son's disabilities over the past 4+ years of blogging, but rarely mention my own. I think it's because I like to pretend they aren't disabling.

Ha!

Being a migraneur (one who suffers from migraine headaches) is an ongoing battle. Starting in middle school, I've been plagued with migraine headaches nearly every week of my life, some weeks even more. The only time I recall being migraine-free was the first 2 trimesters of my first pregnancy.

I found out about Imitrex when it first came on the market in the 90s. I'd had a migraine for 3 days, and ended up sitting at the doctor in a heap of tears and pain. He told me to hang tight, turned off the lights in the exam room, and stepped out into the hallway where he summoned a nurse, and told her to get an Imitrex injection immediately.

For the first time in my life, a medication got rid of my headache AND the other migraine side effects (nausea, light sensitivity, sound sensitivity, speech difficulties, motor impairment). It was amazing. It also felt like someone had place my heart in a vice grip for about 15 minutes.

Turns out you can't use Imitrex too often because of the side effects. I had one doctor tell me I'd end up having a heart attack if I used Imitrex as often as I needed it. So, I embarked on a journey to prevent the migraines.

After trying a whole host of pharmaceutical approaches to preventing migraines, I gave up. Nothing was working, the side effects were sometimes worse than the pain. I even tried acupuncture, which provided relief for a few months, then they were back.

So, I continue to get migraine headaches, usually a few times each week. If I catch them early, I can keep them at bay with ice packs and OTC meds. If not, I turn to the Imitrex or Frova. If they're really off-the-hook, I have to add pain meds to the mix.

But, no one can tell by looking at me that I suffer from this regularly disabling condition. I don't have a forehead tattoo alerting them, and I don't wear a t-shirt that says, "I have migraines, what's your excuse?" (Although, perhaps I should.)

Fortunately, I no longer work outside the home. Unfortunately, I do need to parent and homeschool my children. The great thing about homeschooling, for our family, has been the flexibility to accommodate our special needs without the usual battles of advocacy. I no longer have to explain to employers that I don't have the kind of headaches where you pop a couple of Advil, and go about your day.

Being a migraneur is one of the disabilities I live with. The other is Fibromyalgia. That one has been even harder for me to accept. I'll save it for another post.

Reblog this post [with Zemanta]
Read More

1/10th of Who We Are

IMG_4516 Yes, we are a family with a special needs child. But, you need to know something. While it enriches the definition of our family, it is not all-encompassing. We are so much more. Our child is so much more.

 

We are often faced with thinking about this 1/10th of our identity for a disproportionate amount of our time. Bug’s tics are not our focal point. They do not define him. They do not explain our life. They do not shape our days.

 

Yet, in order to allow our family to be the other 9/10ths of who we are, we are forced by others to focus on the 1/10th. We are called upon to defend, explain and justify.

 

Why? Because fair and right don’t happen in a vacuum. Fair and right require education, advocacy, and perseverance. Fair and right ask you to check your world view at the door. Check it. Change it. Reform it.

 

We remain, as always, cautiously optimistic that the world will become a better place, that others will see the light, that doing the right thing will become the thing that is done.

 
Reblog this post [with Zemanta]
Read More

Sarah Palin Keeping You Up Nights?

sarah palin as tracy flick (toying with photo ...

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.
1st Floor
Arlington, VA 22202
United States

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.

Reblog this post [with Zemanta]
Read More

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.

Read More

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.

Read More

Tourette Syndrome on the Radio

Jamie-Grace, Founder of teensWts.net, is Raising Tourette Syndrome Awareness - ON THE RADIO!!

When: August 3rd 6-7am Eastern Time

Where: On www.star94.com or 94.1 FM in Atlanta

She'll also be posting the program on You Tube after it airs.

(Preview Here)

For more information about the Tourette Syndrome Association's Youth Ambassador Program, including an outstanding 21 minute educational clip by the teen founder of the progrm: click here, and be sure to check out Jamie-Grace's own site for even more teen-targeted resources.

Read More

Reclaiming Retarded

Words give meaning to our thoughts, emotions, expressions; everything we do as writers. They shape the experience of our readers. The art of the craft of writing is choosing the words that will shape our readers' experience to match our intention. Easy? Ha!

Words are used to build up and break down. Their meaning changes. Sometimes the change is small and slow; other times it is quick and intentional.

Let's look at the word gay. Originally, gay meant happy. Then, it morphed into a derogatory description for homosexual. Then, the derogatory meaning declined as the homosexual community "reclaimed" ownership of gay. In another tug-back by the opposition, gay was taken to mean lame or stupid.

Similar paths have been seen with words like queer, bastard, cunt, and nigger. The groups the words are used to demean reclaim the words and strip them of their power.  Sometimes it works, sometimes it doesn't.

During the Special Needs panel at BlogHer, an audience member, Stephanie Klein, asked if using the word retarded was an offensive word choice for referring to her son. There was visible cringing in the room, much like I would have expected in a panel on gender identity 15 years ago. One panelist, Jennifer Graf Groneberg, eloquently pointed out that our words do have impact, do effect our children, and either honor them or demean them.

My own son has been known to use the word retarded to mean lame or stupid, much like the current meaning for the word gay. Since he is my child, who would have been called retarded not so many years ago, I had to explain to him what that meant, how that word's power would have been used against him.

But, I wonder. Is retarded just another word that's being reclaimed by the community it's been used to hurt? Will it come to lose its power? Has it lost it already with the younger generation? In our house, it is often used to mean lame or stupid, but it's origins are not forgotten. Would I use it to describe a child...hell no. I would not give it back its power in that way.

Can a word really lose all of it's hurtful power? I'm not sure. I think if the demeaned group uses the word themselves, it can work, but spreading the use out to the masses...that seems like a slow and complicated process, often back-firing. Think about the word nigger or even nigga. It's still not cute coming out of a 15-year old white boy's mouth. I don't think it ever will be.

Some words have caused so much pain, been so hurtful, had so much power, that time is not enough to return them to a safer place in our lexicon. Some words remain charged and off-limits.

Do I think you should describe your child as retarded in your blog? Not so much. Would you describe your child as a queer nigger? I'm guessing not, but I could be wrong. I have yet to find the mother who'd find that funny, endearing, or the way she would want to represent her child, but there are all kinds of mothers in this world.

If your child grows up to refer to himself in those terms that is his/her right, but in this writer's opinion, it is not yours.

Read More

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