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.

Look Who's Watching: Autism Stalks

When you talk about a big corporation, never think they aren't paying attention, especially when you do it in a public forum. Brand is everything. Protecting image is king. My one small blog post has already gotten the attention of Autism Speaks. At last count, they'd spent over 15 hours staring at that post. The clock is still ticking. It's nice to see Autism Speaks using their resources to worry about me. I'm obviously a huge threat to Autistics.


Autism Speaks Doesn't Speak For Our Family

I don't think I've ever addressed this here. I need to. It's important. It's about neurodiversity.

My son's brain doesn't work exactly like mine, and that is okay. In fact, we like it that way. We don't want to change him. We appreciate his differences.

Is it always easy?

No.

Does the world need more people like him?

I think so. He's a pretty interesting dude. He brings a lot to the table.

Does he need a cure from a disease?

No.

Does he need to be fixed?

No.

Should we prevent children being born like him?

No.

Is there an epidemic?

Depends on how you look at the statistics. Which version of the DSM are you using? He would have been called something different in each one.

I do not donate money to Autism Speaks.

They do not speak for my son.

Fortunately for my son, he has a voice that he is able to use to speak for himself. However, just because a child isn't able to use his voice doesn't mean he has nothing to say.

Think about that.

Brains are complex, interesting, unique things. They aren't puzzle ribbons.

Here are some valid, concrete concerns about Autism Speaks as an organization:


  • Autism Speaks' advocacy is based on the view that autism is a disease, a viewpoint not necessarily shared by autism scientists and certainly one not shared by many autistics.

  • Autism Speaks perpetuated the myth that vaccines cause autism, contributing to reduced vaccination rates and the deaths of young children from vaccine-preventable diseases.

  • Autism Speaks uses fear-tactics to raise money. Case in point, their video I Am Autism, which personifies Autism as a child-stealing criminal.

  • Autism Speaks has an agenda of eugenics; they want to screen prenatally for autism and, according to their co-founder Susan Wright, "ultimately eradicate Autism for the sake of future generations."

  • At last report, Autism Speaks had no representation from the autistic community on their Board of Directors. None. How do you speak for a people without the people? Is the NAACP made up of white people? I think not. Is NOW run by men? It is unheard of for an organization representing the disabled and disinfranchised to not include those effected in their decision-making members.

  • If, somehow, none of this bothers you, at the very least, you should have some concern that according to their 2010 annual report, Autism Speaks spends OVER HALF of their proceeds from their collected contributions to pay management salaries.


What's the alternative?

 

There are a number of organizations that include the autistic community in their governing bodies and work to advocate for their rights as neurodiverse people, services for children AND adults who needs them, and research that is meaningful in finding out HOW brains work to determine best-practices for assisting people who need it and want it, not in the view of autism as a disease or dysfunction, but as a difference.

Here are some of those organization who are supportive of autistics:

 

 

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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Tied Shoes and Ponzi Schemes

Tied ShoelacesImage by sobriquet.net via Flickr

I taught my son how to tie his shoes today. Not that two-loop fake tie, but the tie that actually stays tied. He’s 12. It was time.

When you’ve got a kid with dexterity issues, you put these things off. Aspies are notorious for having trouble with things like dressing themselves. Show me a teenage boy in elastic-waist pants with slip-on shoes and a collarless shirt, and I’ll bet my mother’s underpants he’s surfin’ the Autistic Spectrum.

Bug’s been having me tie his shoes every damn day before welding camp. (They require you to wear real shoes, hence the ties.) After exposing my crack to the crack smokers in the hood outside camp one too many times, I decided to teach Bug the real way to do this shit.

As we cruised along the freeway toward camp, I had Bug put his right foot up on the dashboard. “Okay, make a bunny ear loop thing using the right lace with your right hand and pinch it. Now wrap the left lace around that looped ear and shove a piece of it through…Oh, fuck. Hold on. I have to merge. Okay, make the loop again. No. With the other hand. A bunny ear. Here, let me show you with my iPhone charger. Like this. Yeah, I know it doesn’t look anything like a shoelace. Try putting your left foot up instead so I can see your foot better while I’m driving. Oh, nevermind. Let’s just do it when we get there. I don’t feel like killing a shitload of people trying to teach you to tie your shoes while I’m driving. Yes, you can turn NPR back on. Yes, I see the humor in the fact that his name is Madoff and he made off with everyone’s money. Do you know what a Ponzi scheme is? Uh huh. Yeah. Really? From a podcast? I see. Yes, I’ll help you with tying your shoes when we get there.”

We park. I get out. Ass crack exposed. I tie his right shoe to demonstrate. Bug does a fumble-fingered attempt at the other shoe, making the mistake of a too long second loop that results in the single loop final tie. We’ve all done it. It happens. I make him do it again. This time he succeeds.

As we walk into camp, I tousle his hair and say, “Bug, I’m glad you learned to tie your shoes. Now I know you’ll be able to move out of the house, go to college, and teach your kid to tie his shoes some day. Plus, it’s about fucking time.”

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Change: The Feared Word for Special Needs Families

I mentioned in a recent post that our family’s medical insurance changed to Kaiser Permanente in January, requiring us to change all of our doctors.

This may not seem like a big deal if you are a family that moves often or has flexible children, but we are not that family. In fact, Bug and Peanut had been with the same pediatric group for 10 1/2 years. Add in Bug’s Asperger Syndrome and Tourette Syndrome diagnosis and we’re even less flexible.

Our former pediatrician understood Bug very well. He got Bug’s quirky Aspie tendencies. He connected with Bug, talked about gaming with him, made sure they were on good terms at all times. He understood Bug’s tics, the varied symptoms of Tourette Syndrome, and never hesitated to refer us to professionals when he was out of his comfort zone.

Today Bug had his first appointment with his new pediatrician at Kaiser Permanente. I hand-selected this particular doctor based on his online profile. (Have I mentioned that I love how Kaiser embraces technology. They totally get it.) He just read like a good fit, but that was just a profile. These things can be a crap shoot.

We arrived on time for our appointment, checked in, waited just a few moments, the nurse took Bug’s vitals, and situated us in an exam room.

Within a few minutes, the doctor came in. He was incredibly personable, shook my hand, said hi to Bug, and sat down to get Bug’s history, entering it into the computer as we talked.

He took the time to explain some of the subtle differences of Kaiser—how the immunizations are handled in a central location, how medical records from prior doctors are entered, etc. He gave me his card and wrote his email address on there for me to contact him directly with any concerns or questions.

He did a brief exam of Bug, talked with me about his BMI, past/current meds, and education, and then we were pretty much done.

Except for one thing.

Bug asked if he could have a glove from the box on the wall.

And, this is how you win over Bug. When he asks for something quirky, and you may or may not think you know why, say “yes.”

The doctor asked him if he wanted a white or blue glove. Bug chose white. Then Bug started to blow up the glove, making cheesy ‘hand’ jokes, and eventually turning it into a bunny.

We stopped by the pharmacy on the way out of the building to pick up Bug’s prescription, accompanied by the glove bunny. On our way out to the car, I told Bug I really liked the doctor and thought the appointment went well. I asked Bug if he liked the doctor.

“Yes, he gave me a glove. So, he’s not a strict doctor. A strict doctor wouldn’t have given me a glove. I don’t like strict doctors.”

Who knew? Well, the doctor did. That’s who.

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Fame Online

I love finding out my favorite authors, musicians, or other 'celebrities' have an online presence, especially when it's in their own voice. It's rare, but so enjoyable when you can develop a social connection to people whose work you admire. It's also nice to find out they're human. I mean, you know they are, but it's nice just the same.

Twitter has been one place I've enjoyed finding some of my favorite celebs. I'm not going to give out their @names because it feels a little stalkerish, even more so than me stalking them twitter, but I will totally tell you that Dave Matthews, Lance Armstrong, John Hodgman, and Adam Savage are the real deal.

On Facebook, I even found John Elder Robison, Augusten Burroughs' brother, and the author of "Look Me In The Eye," a must read for anyone who's dealing with Asperger's. He also has a personal blog, which is fabulous, and totally him.

By putting themselves 'out there' with the rest of us, using social media like the rest of us, not just as a publicity tool, it lets me know what kind of people they are.

Real.

And I like that.

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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.

 
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Blissfully Published: Teaching "Team" To My Aspie

blissfullydomestichealthy bliss contributor 

I have a new gig!

I'm writing for the online magazine, Blissfully Domestic , in the Healthy Bliss  channel (and occasionally in the Family Bliss channel).  My articles will be on the topic of Special Needs.

The magazine has recently re-launched with a whole new look. So, come check it out.

My first article posted today. You can read it here. It's about teaching the concept of "team" to our son with Asperger Syndrome.

There's also a healthy breakfast post over there that keeps making my mouth water. Strawberries and honey. Yum! I need to hit the grocery store so I can make it tomorrow. It doesn't even involve cooking. That's my kind of domestic bliss!

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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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Guest Blogging

The lovely, T, of Send Chocolate, asked me to guest blog for her while she's away at Camp Rock. Talk about pressure. This is my first time guest blogging, and people actually read her blog. Like more than one of them. SCARY. I had to write in complete sentences, use punctuation, and make some kind of sense. I will not lie to you. I lost some sleep over this. Okay, that's a total lie. I lose sleep when the wind blows...or when it doesn't. I am the Queen of Losing Sleep. Occasionally, I find it again, but usually during daylight hours.

If you're feeling up to it, pop over to Send Chocolate and give me some comment love so T doesn't come home to a lonely blog.

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Making Choices - Does that look like it will fit?

Bug wants to play football this year. Contact football. Why? Because he wants to "smash into things." He doesn't want to hurt anyone. He just has an overwhelming urge to run into shit. I feel him. If we could fit a football training sled in the backyard, we'd have one. I could stand on it, and Bug could push me back and forth across the yard.

Because Bug is a self-aware dude, with that Aspie honesty, he is being wholly truthful when he says he wants to run into stuff. He has no desire to throw or catch the football. He knows that many positions in football never touch the ball. So, why should he need to. He knows that the weight he gained this past year (thanks to medication he was taking for Tourette Syndrome) makes it hard for him to run for prolonged periods. Bug also knows he is extremely difficult, if not impossible, to knock over. His centered stance is impressive. He is a rock-solid base, folks.

We are fortunate to live in an area that has two youth football leagues. One is what I would call the Glory Days League, catering to those dads who warmed the bench in high school or never made the team. They are uber competitive, live through their kids, and see nothing wrong with acting like toddlers if they don't get their way. Not my idea of fun nor the right fit for Bug.

The other league was created to address the problems of the Glory Days League. Parents are prohibited from behaving like toddlers, all kids get to play, and the tone is one of team work and fun, not an extension of parental egos.

In an effort to give Bug some pre-season exposure to football, we signed him up for a camp at the local recreation department. The camp was supposed to split the kids up into groups by age and position, and teach them the game.

When we got to camp this morning for Day 1, Bug was unsure of how this was all going to work. Transitions are not his strong suit, not most Aspie's strong suit, and the fact that camp starts at 9am wasn't helping. Bug is also not a morning person. I am not a morning person. (My BlogHer buds decided we'd rename it mourning. I like that. It makes a shitload of sense to me.)

After some reassurance that we would just go check it out, see what it was like, and that I would stick around, Bug agreed to give it a try. I signed him in with Teen Helper Girl who was manning the registration table. A mound of tiny t-shirts was piled on top of the table. Kids who had already checked in were wearing the tiny t-shirts to create that uniformity we so love in team sports. It also helps ID any camp escapees.

Teen Helper Girl told me they had run out of adult-sized tees, but had ordered more. She said Bug was welcome to try one of the child-sized tees or just wear a stick-on name tag. Bug opted for the name tag.

Just then, Coach approached and snatched one of the child-sized tees to hold up to Bug. "They won't shrink, you know. They're a 50/50 blend," he says as he stretches the tiny shirt across Bug's back, trying to demonstrate how it would fit.

"No thanks," I said.
"Well, we really underestimated how big these kids would be," said Coach.
"Yes, well that shirt isn't wide enough or long enough, but thank you," I answered, thinking to myself, Are you high or blind, Coach?
"Are you sure? He could try it," offered Coach.
"Um, no. Putting him in a tiny t-shirt will not work, but thanks," I replied.

At 9am I just don't have it in me to explain sensory issues, or transition difficulties, or medications that cause weight gain, or the whole host of reasons why my reluctant son would not be squeezing his torso into that tiny tee shirt.

After coaxing Bug into putting on his cleats, I told him I'd stick around. He agreed to go out and give it a try. In the old days, I would have pushed harder, given him less leeway to make these choices for himself. But, he's not just getting older, he's a person. I am learning to respect that my values are not always his values. I am learning that my goals are not always his goals. I am learning that it's okay when he says, after an hour of trying something new, to let him decide he's done for the day. He knows himself well. I am learning to respect that.

We may go back tomorrow. We may not. It will be his choice. He will decide, I will support him, and we will continue to teach each other how to be in this world.

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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.

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The Other Voice of Autism

If you think you know what Autism is, think it's on the rise, want to find a cure, or have a magnet on your car that looks like a ribbon of puzzle pieces...read this article in Wired magazine. Then, pop back over here and tell me what you think. Do you still have the magnet on your car? Are you still looking for a cure?

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