I will be ready next time.

Today we did what we always do on Fridays, we went out for lunch with some of our favorite friends. And for the first time, I was aware someone was very aware of us.

Normally I am oblivious to everybody around us, and I really don't worry too much about what other people are thinking of me and my little family and our friends. I have made it a point not to make too much eye contact with other people while we are at lunch because if they are disapproving or curious I just don't think we should have to deal with it; that's their problem. So I usually just have a great time, laughing and eating and enjoying myself.

But today somebody made a special point of staring. They must have been doing it for quite a while because like I said, I never notice. It was like this person and her friends at her table, which was about ten feet from ours, wanted to make sure I knew they were watching us. At first I thought, maybe they know us and I panicked for a second because at a quick glance I didn't recognize any of them. Then I started to feel uncomfortable, and I realized that this is what that person wanted me to feel. Because the look of... disapproval and disgust on her face, and on the faces of her friends that kept turning around to look at us, was pretty clear.

"Do you know  me?" I mouthed to her. She paused for a second and glanced over her shoulder to see if I was talking to her. She looked back at me again. I repeated, "Do you know me?" She shook her head. I mouthed back, "Okay, just checking, because I saw you looking at me for a while." She just kind of raised her eyebrows and pursed her lips. We were getting ready to leave, and I wondered if I should go say something to this person, but frankly, I didn't know what to say.

Now, you would have to be a very sheltered person and not go out in public much not to realize there is something very different about my son. He wasn't being loud, certainly not any louder than other kids in the restaurant. My little guy is very gregarious, laughs a lot, and acts just plain goofy sometimes. It's pretty clear there's something different going on with him, that he isn't misbehaving, that he has his own spin on things.

As we were walking to the car, I pondered what was so disturbing to that woman in the restaurant, what could have made her stare at us, what made her friends keep turning around, all looking so.... put out by our presence. Was it that they thought my son wasn't "acting right" and that my husband and I weren't being good parents, weren't being strict enough with him? Although this is probably the most likely answer, it seems pretty unwarranted on this day.

I am probably being a little paranoid here, but something just doesn't make sense. Since I've not encountered this type of attitude before (although it could be around me all the time, like I said, I am purposely oblivious to typical people's reactions), I really started to wonder. Could it have been that the people at the other table didn't think we, as a family, should be out in public because my son isn't "normal"? That we had no business going out for lunch where everybody could see us? That they preferred we stayed home, out of sight?

Since I don't know the answer and never will, I thought, I will be ready next time. Next time, I will get up from my seat, walk over to the table of gawkers, and introduce myself. I will say, "I'm sorry, I saw you watching at us and I figured you must know me but I'm afraid I can't place you." If they have the decency to be uncomfortable at that point, I will just apologize and say, "My mistake, enjoy your lunch." But if they answer back with anything -- ANYTHING -- that has to do with my son or my friends I will make sure to let them know that these children have autism, and they love coming to lunch. And they have just as much right to come to Cracker Barrel and anywhere else they like to go. And I will tell those people that they'd better get used to it, because we are not going to keep our children home. And then I will call my little guy over and I will introduce him, and I will say, it was nice to meet you all.

Because I am going to show my son we have better manners than those that would stare and be disapproving of a seven year old boy who is laughing and enjoying his mashed potatoes and being out on a sunny day for lunch with this friends.

I will be ready next time.

And we fought back.

Remember yesterday when I talked about Amelia? If you've been following this story you know how hard people in the disability community have been working to let the country know about this family's struggle to get an organ transplant operation for their little girl. The hollering is paying off.

Sunday Stillwell's online petition at Change.org = 17,000  19,000+ as of 01/17/12, 2.00am

USA Today: 'Team Amelia' backs transplant for special needs child

Huffington Post column by Susan Senator

Huffington Post column by Lisa Belkin

Keep hollering. Share the family's story. "Like" the Facebook page to support Amelia. Leave a comment on the Hospital's Facebook page. Sign the petition at Change.org. FIGHT BACK.

A Fighting Chance

Let's cut to it, shall we? A little girl named Amelia has Wolf-Hirschhorn Syndrome, "a condition that..results in severe developmental retardation, a characteristic facial appearance, and may include a variety of other birth defects. includes developmental retardation and other birth defects." Amelia's mother, Chrissy Rivera, blogged last week about her daughter's need of a kidney transplant, and how she was told her daughter was being denied the surgery at Children's Hospital of Philadelphia because Amelia is "mentally retarded". According to Ms. Rivera, no other medical reason was given, or necessary in the view of the transplant specialist. The family said that they had people who would donate a kidney to Amelia, but she was still denied.

In the disability community, there has been an uproar. The Children's Hospital of Philadelphia's Facebook page has had non-stop comments, imploring the hospital to reconsider. Sunday Stillwell over at Adventures in Extreme Parenthood started an online petition asking others to support Amelia, and you can find it here. Please consider adding your signature to the (as of this writing) 12,000+ people who have taken the time to show their support.

So let's take a look at this issue. I have spent the last 48 hours trying to convince myself that this is rare, that this is not how our medical institutions operate, that people with intellectual disabilities are not routinely denied life-saving care and organ transplants. I have Googled everything there is to Google. I have looked at different countries, different governments, different decades... and now I have to face what I have long feared -- that people who are considered "mentally retarded" have time and time again been denied, or transplants have not even been suggested as a solution to failing organs. Sometimes there are so many physical complications that a patient may not survive the procedure, but more often than not, studies have shown that most (oh please, tell me there are some out there) most people with "mental retardation" - even in the United States -- are not presented with the option of a transplant even if it could save their life. I found scholarly papers by transplant professionals in all parts of the world who support transplants for people with intellectual disabilities, stating ethical and moral grounds, as well as viability of success at least equal to those with "normal IQ".

Here's what I have been trying to process for the last two days:

1. As far back as I can research, I discovered that many in the medical profession believe it is a waste of resources -- organs, professional time and effort, etc. -- granting transplants to people who have been deemed "mentally retarded".

2. It seems that most people feel that individuals like Amelia, those with intellectual disabilities, should be entitled to have a kidney transplant, especially because one is being provided to her by a family member.

And here's what has keeps me up at night:

1. There are people who believe individuals with lower than normal IQs do not have the right to life-saving medical procedures involving organ transplantation.

2. There are people who believe individuals with lower than normal IQs have the right to life-saving medical procedures involving organ transplantation if there is an organ available from the family.

3. There are people who believe individuals with lower than normal IQs do not have the right to a spot on a waiting list for a compatible organ donor.

4. There are people who believe that my son, along with the other 100+ individuals I know who have intellectual disabilities are not entitled to a life-saving organ transplant under any circumstances.

5. People with intellectual disabilities around the world have little to no access to life-saving organ transplants.

This has been happening for years and years and years. This is not politics. If you think this has anything to do with upcoming "Obamacare" changes, you're a fool. This is about discrimination and always has been. There are people who think children like mine, and adults who were once children like mine, do not deserve to live. Sound overly dramatic to you? Go read Amelia's story again. She wasn't even given a fighting chance.

At present, there are very few places on earth that would help my son if God forbid he ever needed a new liver, a new kidney, a new heart. My son. My little boy.

What about your children? Your friends' children? Which side of the line do they fall?

Please help us help ourselves. "You and I have got to do for you and I." Fight back. Holler and scream to anybody you can find about Amelia and your children and your friends' children and adults who were once children like ours. Call the newspapers, the television stations, the hospitals, your members of government. Tell everyone you know about Amelia, and how it is wrong that people with intellectual disabilities are denied life-saving medical care. Fight back.

And become an organ donor, damnit.

"It's not work, it's a GAME"

Trying to convince The Boy that not everything we do at the table is work. Sometimes there are things that are called "games", and even though it might look like work, this is gonna be fun!

Okay, he's not buying it. So I altered our game Ned's Head a little bit, tried to make it more entertaining by sticking things in this strange contraption that the little guy might actually be interested in finding just by feel. He didn't have a lot of interest right off the bat in feeling around for the "dirty diaper", the "tongue", or the toy vomit that comes with Ned's Head. Kid is smart. So I stuck some animals, plastic fruit and cars in there, and wrote my own cards for us to use. He is actually starting to look pleased when I haul the box out to play. I think we will work up to the diaper, puke etc. and extra large used q-tip that came with this thing, just so he can play with other gross little boys sometime who like that kind of stuff.

Have you played Ned's Head?

Glad I didn't have to resort to putting his favorite things in there, like cookies, biscuits or mac & cheese, no matter how appealing that may have been for him to find. That would have made a royal mess.