Wednesday, June 07, 2017


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. 

Friday, May 05, 2017

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.

Monday, April 10, 2017

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.

Saturday, April 08, 2017

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!

Sunday, April 02, 2017


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...

Saturday, March 25, 2017

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!

Monday, February 06, 2017

Looking so grown up!

Joey and his young lady.

Ready for school!