We’d just sat down for lunch when we both heard that pronunciation of the word, ‘Mother’ that communicates so much. ‘Muhhhhh-therrrrrr’. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy’s Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That’s what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn’t she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she’d had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

‘Trouble is you think I have Down Syndrome all the time and I don’t,’ he said with real frustration.

She stopped again, ‘What?’

‘I only have Down Syndrome sometimes, when I’m learning something new or if the words are real hard. I don’t have Down Syndrome the rest of the time when I’m doing what I know how to do.’

‘And you don’t have Down Syndrome now?’ she asked.

‘No, I know how to get my lunch, I buy my lunch at school all the time. I don’t have someone with me all the time you know.’ he was frustrated, he didn’t even realize he’d said something of real importance, to me and to his mother.

‘So,’ she continued looking at him hard, ‘you don’t feel like you have Down Syndrome all the time.’

‘No, most times I don’t even think about it,’ he said.

She said, her tiredness seemed to be gone, ‘Go ahead, we’ll find a table after we’ve got our food.’

They disappeared from view.

Joe and I looked at each other. I said to him, ‘That kid should teach classes to parents of kids with Down Syndrome.’

On our way home, chatting about just stuff, I realized that at that moment I didn’t feel disabled, it wasn’t part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn’t impact what I felt. I’m only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I’m just – me.

Meanwhile, Rush Limbaugh used the word on his radio show. “Our political correct society is acting like some giant insults taken place by calling a bunch of people who are retards, retards… I think the big news is he [Emanuel] is out there calling Obama’s number one supporters f’ing retards. So now there’s going to be a meeting. There’s going to be a retard summit at the White House.” Sarah Palin’s response was that this was satire and was OK. And over in the Texas gubernatorial race, a consultant for the Republican governor Rick Perry admitted that he repeatedly used the word in a conference call. Palin’s response was to have a spokesman say that it was disrespectful. But there was no call for the consultant to be fired. So it appears that in Sarah Palin’s world it’s OK to refer to people using the R-Word as long as you are a Republican. In other words, she is using something that we are all fighting to stop for her own political gain.

So among the people who have used the word in public, only Mr. Emanuel has taken the vow to stop using the word and has promised to help the Special Olympics fight against the word, but he is the only one who Sarah Palin has publicly spoken out against and demand be fired. But that isn’t the end…

The show Family Guy on Sunday night featured the character Chris Griffin dating a young lady with Down syndrome. Palin was in an uproar insisting that the show made fun of her son. But in the show, the young lady is the tough one. She is fully empowered and bossy. She acts like a regular person not the stereotype of a person with a disability. Chris drops the young lady after she bosses him around. “I used to hear that people with Down syndrome were different from the rest of us but you’re not. You’re not different at all. You’re just a bunch of [bleep] like everyone else.” Yep, just like everyone else.

By the way, the young lady with Down syndrome, was voiced by Andrea Fay Friedman, an actress who has Down syndrome.

“Defending the word ‘retard’ is not heroic” By Michael Gerson

Discuss.

OK, so now Michel is getting upset and losing patience so she starts looking into a feeding program and the hell with this GI doctor. But first maybe it’s Mikey’s teeth? Maybe they hurt so he doesn’t want to eat? Off to Dr. Charlie, the dentist, who reports that Mikey’s teeth are fine but Mikey looks terrible. His skin is translucent, his hair is thin, and he seems to have no energy. Dr. Charlie says, “Take him to the ER for fluids. The little guy looks dehydrated.” So it’s off to the ER where “Yes, Mikey is dehydrated” so Mikey gets an IV and some blood tests. The blood tests show his Depakote levels are too high (Depakote can cause stomach irritation) and his thyroid levels are too low (low thyroid can cause loss of appetite).

So they send Mikey home and say less Depakote and more Synthroid. And maybe he should have a little Risperdal (or something else) to increase that appetite. Mikey gets up today and seems better. He eats every Fruit Loop he can lay his hands on and has a big glass of milk too. So now the question is, will it last? Will the medication changes help?

More info to follow when we have more to report.

When I created the forum, I expected that it would be me and a couple of other people trying to answer each others questions. I never expected that it would grow to the size it has with so many people across the United States and around the world. As Mikey has grown older and with his dual diagnosis of both Down syndrome and autism, I have found that I have less in common with the people who visit our site but that’s OK. The members of the site take care of each other and help each other and support each other. When a new member shows up worried and frightened, the members of our site quickly answer their questions even if the answer is as simple as, “I have been there and I understand.”

The underlying theme of downsyn.com has always been that the lives of people with Down syndrome is worth living and worth protecting. I am pro-choice but I have always believed that choice is about making intelligent and informed choices. Aborting because your baby has Down syndrome is always the wrong choice because the lives of people with Down syndrome can be wonderful when they are raised by loving parents who understand the special needs of their child. I guess this is why what happened back in September hurt so much.

What happened? Certain members of the site became angry with me because I expressed my pro-choice beliefs. These people said that I couldn’t possibly be a Christian because I supported Obama and Obama supports choice. (Although, by their definition of what a Christian is, I would prefer not to be one.) These people left the site to start their own “pro-life” site because they couldn’t see what downsyn.com is about. I have no problem with someone wishing to start their own site, but to leave the site that brought these people together, to leave the site that showed them how to be a better parent to their child, to leave the site that comforted them in their time of difficulty, and to leave our site and then to try to convince other members to leave breaks my heart. It is as if a friend stabbed me in the back.

But these people fail the most basic understanding of what downsyn.com is about. Children with Down syndrome are saved by this site. Parents who are looking for information and are thinking about making that choice are not going to “pro-life” sites. They are looking for honest and complete information from non-biased sites. They are looking for information, not “abortion is wrong and you aren’t a Christian if you have one”. But that is what they get from “pro-life” sites. This means that the people on “pro-life” sites are talking to each other. The people who go to those sites have already made their choice.

I have never kicked anyone off my site for being “pro-life” and I never will. For children with Down syndrome, I am pro-life throughout their lives. I think our site (and by “our”, I mean all the parents who share their children on downsyn.com) have proven that people with Down syndrome truly have lives worth living and even more, they make our lives better.

The other dog is a 10 year old cocker spaniel. His name is either Dr. West or Fud. I don’t have any pictures of him yet. He’s at the vet overnight because he needed his eyes fixed and a couple of teeth pulled. Michel took him from the pound because she is a sap and felt sorry for him. It was pretty unlikely that anyone other than another sap would adopt him so Michel took him. He is also a very affectionate and very lazy dog.

The cats adapted to the dogs fairly quickly. China has made herself the leader of the pack as she orders the two dogs around. The other cats try to ignore the dogs and the dogs don’t bother them. The “Dr.” names, by the way, came from Beth who wanted to name the dogs after characters in the movie, “Re-Animator”. The other names came from Michel.

Last night we dropped Mikey off at sleep away camp for the weekend. This is the same camp Mikey went to during the summer. They are running weekend camps throughout the off-season so we signed Mikey up for two weekends, this one and again in March. He seemed very excited to be there running around and playing with the other kids. He discovered how to set the door alarm off so that should be fun during the night. He also seemed a bit tired as he wanted to lie down in his bed. He didn’t have any problem with us leaving. We gave him a kiss and it was goodbye.

So we got to sleep in today without Mikey coming in at 5 AM to wake us up. Yes, he hasn’t been sleeping well for the last couple of weeks. He wakes us up and then goes back to sleep. I got to sit in bed and read the NY Times. The house is very quiet without him, even with the two new dogs. Oh, didn’t I mention the dogs? I’ll post about them soon.

The hospital told the parents they had no rights and Elliott was leaving with or without them. When Elliott was two weeks old, the hospital loaded him up and sent him to the airport to be transported to Mexico. A lawyer for the Mexican consulate called the police who called the hospital. The police ordered the hospital to return Elliott to the hospital. At the hearing, the hospital asked the judge to send Elliott to Mexico because he was trespassing by being in the hospital. Eventually the Arizona Medicaid system agreed to pay for Elliott’s care and suddenly the University Medical Center decided that it was best for Elliott to stay. As the lawyer from the consulate said, “The medical pretext for the transfer disappeared once they found the money.”

The problem, of course, is the American medical system. What happened to Elliott is not actually unusual. People who come here and do hard work are treated like garbage the second they get sick or injured. The mind boggles.

h/t – NY Times – Getting Tough: Deported in a Coma

The research the DSRTF is paying for that may help children with Down syndrome is not being paid for by the US government. The cost of that research? $150,000. Approximately 10 minutes of what we are spending in Iraq.