Sunflowers

I watch him in a room full of people, a store or a park or a fair where the throngs swirl and eddy about us, and I see how alone he is there. I worry.

Don't worry, they say, he's going to be OK. He's going to be fine. He's smart and funny and he loves people. He wants to interact with them. He smiles and laughs and loves everybody. I see the intensity of his joy and his love. I see the intelligence burning behind the fumbling attempts to connect and try to bring people into that world, to enter their world, to bring them together. I see him trying to touch those lives.

I worry because I remember.

Holding a photo in my hand, me at 14, 15, 17, 20. I remember what it was like to be in rooms full of people and all alone. I remember the giddy feeling of finally making a connection, clinging to it as a lifeline, sometimes- just like my baby- a little too close or a little too tightly. I remember how much it hurt to grow up and try not to explode all over, and not to lose oneself out in your own world. I remember running in the rain, finally with other people like me, and then being ripped away to go back to a reality that thought I was too tall, too fat, too weird, too smart, too ugly, too much, and had no compunction against telling me so.

I remember watching them from the distance. I remember finding that being next to them didn't matter. I could be dead in the center of their space, and completely invisible, or so visible that every flaw was shoved into my face.

I look at the photo and don't see a girl who was fat, or weird, or ugly. She looks beautiful. Overwhelmingly, majestically, almost too beautiful. I try to remember that was me. Then sometimes I try to forget, because it hurts. After all these years, it is still agony. Time had blunted it for a while, but now I have my boys. I remember. If they could reject and scorn that beauty, that wonder of a child, what pain will my boys have to endure? Why should they have to?

Being alone in a throng of people hurts. Watching them swirl by, I know what Kirchner meant. I know why van Gogh wanted to paint. I wonder if this is what it is to be a masterpiece. I want to run in and hug them, both of them, and tell them. My social Pied Piper and my gregarious ham, the yin and yang of my boys. 

Masterpieces, both of them. I see my brother's face as they turn, his loping gait as they walk across the baseball field or jog in front of me in the park. I remember 13 and 15, and the stark differences between them. I look at what my boys can do, what they cannot do, and I worry. 

It is hard, becoming a work of real art. I realize they both have the pith to bloom through it. 

Community means all of us.

When Joey was little and we were just starting out in special education, Joey's teacher told us to always bring a photo of him to the IEP meeting. The point was to make sure that no one lost sight of the fact that Joey was wasn't just a name on a piece of paperwork. He is a human being.

Being me, I made a Powerpoint. I started with slides about who Joey was as a person- what he liked, things he was good at, and lots and lots of pictures. This is the child we are trying to help. Then I laid out what help he needed and what we felt his goals should be.

I still make them for big IEP meetings. It is important. You have to look into that face and tell me why you think he deserves less than anyone else. I no longer have to take those Powerpoints in to the meetings, though.

I take Joey.

This is HIS LIFE. He deserves it, and has the same right to it, as everyone else. The same as you.

Yesterday, the House of Representatives voted to repeal, instead of analyze and refine, the law that gives my Joey the opportunity to have health insurance. In this country, where healthcare is treated as a commodity and luxury for profit, health insurance is an absolute must for everyone. When profit is the bottom line, costs spiral wildly, and every middle man adds his share. This includes the insurance itself- we add our money into a pool, and the more people in the pool, the less the risk per person for anything they might need. The insurance people then invest that money and hope not too many people need too much, because they want to profit. If too few healthy people are in that pool, the whole collapses. Basically, for-profit healthcare is a big pyramid scheme, and people who actually get sick are at the bottom of that pyramid. Without insurance, you go broke when your health hits a hiccup; you may even die from lack of care.

Or people born with issues that insurers see as medically significant. Not all "pre-existing conditions" are from people making mistakes. As we learned before the laws changed to help all people, autism is a significant pre-existing condition. Because it is a pervasive neurological condition, ANYTHING can be connected to it, especially by the insurance company, who seems to think their opinion is far more important than the expertise and opinion of your doctor in what is "medically necessary."

The House bill converts Medicaid to block grants with federal spending cap. That means the long waitlists for people like my son, waiting to get the healthcare assistance they qualify for, will get longer. When that block runs out, people like my son won't be able to access medical care at all.

Let's be clear: If you cannot afford something, you cannot access it. It is not available to you. There are lots of big mansions out there, but they are not available for me to live in, because I cannot afford to pay for one. A weekend at the beach is out of my reach because not only can I not pay for it, but I would need time off from work to go, and transportation to get there. Having life-saving and life-changing technology is useless if those who need it cannot access it.

When we chop healthcare and community supports, we are chopping Joey's opportunity to be an independent person. We restrict the possibility of him becoming a tax-paying member of society; and we need those taxes to help others in our community who need our help.

That is what communities are for. That is what they do. They bring us together so we can all help out. We are all in this together.

This is the young man you want to throw away, because he is autistic. He has a pre-existing condition, and thus can be denied health insurance, and thus denied healthcare access.

If you think my son, and people like him, are a waste of your tax dollars, I recommend re-evaluating your ideas of community and morality. After all, we should have learned long ago that we all get sick, we all grow old, and we all die. If you think you can face that all alone, without the human community, you are in for a very rude awakening.

Happy Birthday, Little Man

The baby there? He's fifteen years old today.



He was just a little Buddha Baby.



So brand new.



Time flies when you are having fun.

More Aikido!

I'm thinking we may have finally all recovered from colds, allergies, and strep... so back to Aikido! The boys learned some new moves today!

Baseball!

Joey LOVES playing baseball. We are on the Marlins again this year, meaning we have the awesome coaches again, and Joey is super-excited to be on the field! He likes being one of the Big Kids, who hits the ball, often on the first swing, and gets it all the way to the fence! HIs goal is to hit an over-the-fence home run!

I got him new pants this year, and he is super happy. Aikido and baseball, we should be getting in shape super quick!

I may need to take up a sport myself to keep up with him...

On the Move

The boys have taken up Aikido!

There is a class here that works with special needs students, and it has been perfect. Good pace, excellent sensei (teachers), and they love it.

The boys don't have a lot of activities they can do together, so this is very exciting for them!

Also, baseball starts today!


Allan is coaching again this season, with our favorite co-coaching team, Mike and Lisa. Joey is super excited to be playing the Orioles today!

Looking so grown up!

Joey and his young lady.


Ready for school!

Dear Mr. Trump

Joey has a message for you, Mr. Trump.

Joey wanted me to send this to the president, but he also asked me to share it.

Joey is angry about Trump. We don't talk politics around the house, partly because its complicated and Joey gets things very black and white. Another reason is that my husband and I have very different political views, and we prefer not to hash them out in front of the children.

Joey saw Mr. Trump mock Mr. Kovaleski even before I did. (I don't care if he was mocking Mr. Kovaleski in particular or disability in general, it's all the same to us). That happens when you send kids to school- they see things. You can't control it. However, he has been livid about Trump ever since. Joey knows ugly insults when he sees them, and he saw this one immediately.

When Trump became the candidate for the Republicans, he was livid. When he won the election, he was livid. Sworn in, livid. He just cannot fathom how "such a horrible person" could be voted into the presidency, an office Joey holds in high esteem. The idea of blocking immigrants is his latest anger-inducing tidbit. Joey is livid. He says he wants to teach Mr. Trump how to be a good person, how to be kind to people. He has said he wants to go to Washington and share his social skills training with Mr. Trump.

Joey's latest coping trick is to proclaim that he is going to run for president himself. I am not discouraging this at all. But with all the anger bursting out, and my march, we have been talking about how one gets their voice heard. Marching isn't the first step. Writing your representatives is a great first step, and so we talked about that. Even as a 14-year-old, it is something he can do.

I encouraged Joey to think about what he would say to Mr. Trump if he had the chance, and then write it down. The picture above is what he typed up to send to our President.

I think it is a good thing for us all to read, think about, and live by.

We can make the whole world a better place. Let's do that.

We Are All Unique: We Are All Human

I marched in Washington, D.C. today.

My mom and I took the train up, and the crowds were insane. We finally made it to 12th St and the Mall (Smithsonian metro station), and watched people streaming in from everywhere. Solid rivers of people, and they just kept coming. They carried signs, with all sorts of ideas. Women's rights. Minority rights. Religious rights. Disability rights.

Human rights.

Like Horton's Whos, we felt we needed to be heard. After two years of ugly, horrible bigotry spewed all over the media, all over the world, and right here in our own election, we needed to stand up and stop being ignored. We need to stand up and say that belittling others, mocking them, assaulting them, insulting them, this is wrong. This is unacceptable. To have anyone in any office who thinks it is OK is an insult to humanity, and insult to our country, and an insult to YOU. Because you are a human being.

We are all human beings.

Why is that so hard for people to grasp?

There is a basic principle we try hard to teach my kids. Grasping it is the #1 mark of maturity. It is super simple.

Treat others as you would want to be treated. 

Not "as you are treated." Not "as you think they ought to be treated." Imagine you are that other person. How would you want to be treated? With dignity? Respect? Privacy? Understanding? Compassion? Empathy? I hope so. Treat other people that way. It is just that simple.

If you are feeling ignored in this country, you have the right to take to the streets and shout. You have a right to make yourself heard. That is one thing the First Amendment guarantees as a basic right of every citizen.

My son has those same rights. I have those same rights. You have those same rights. It is frustrating, aggravating, depressing, and annoying that so many people just cannot grasp that concept.



This is Joey. This is autism.
This is a human being.