Well, It’s Official.

We got our report in the mail today from the Kennedy Krieger developmental pediatrician that I took Jack to see in December. And it’s not like we weren’t expecting what she wrote, but it’s one thing to think it and quite another to see it in black and white:

“Jackson presented as a slender otherwise adorable youngster.”

I think this might be my favorite report I’ve ever gotten. And, in case you’re wondering, I concur.

Adorable. And slender, evidently.

I [Emoticon] You. (LOL)

“There is no emoticon for what I am feeling.”
—Comic Book Guy, The Simpsons

I have never been the type of person to use emoticons. I have also never been the type of person to write things like LOL, ROFL, or OMG.

But that is really two (very, very important) issues.

First up: the emoticon. Okay. I sent an email to my supervisor at some point several months back and upon reading his response, realized that my sarcasm did not translate to the written word. Which I think is weird, because when I write, I hear me saying the words in my head, so I wonder why you can’t hear them too.

On a side note, please get the hell out of my head.

Anyway, no damage was done by that email to my supervisor, but it did teach me that sometimes a well placed :) makes a big difference. I have to tell you that emoticon usage is not just a slippery slope, but a damn Olympic ski jump. If you have been the fortunate recipient of one of my emails, you are probably aware that they have infiltrated my writing to the point that I can’t write a personal missive with out including at least two little emoticon smiley faces. And the occasional frowny face.

Sometimes I’ll even try to put an emoticon within a parenthesis, which possibly creates a situation where the clarity I am trying to achieve with the emoticon is wrecked by the additional spacing and punctuation.

(It’s tough to have clarity, right? :) )

I’m okay with the :) emoticon and the :( emoticon, but that is as far as I go. Every once in a while, I accidentally miss the shift key and my smiley face turns into a winkey face, like this: ;). That’s a problem, and a little too cheeky for me.

Now, for the LOLs of the world. I have absolutely no problem reading these acronyms when other people use them. In fact, I enjoy them. They convey a lot in just a little bit of space. I particularly enjoy them when someone uses one to tell me that I am making them laugh. Or making them roll on the floor laughing. Or! There is the highly coveted ROFLMAO. That’s my favorite.

But I have clung steadfastly to my belief that I don’t use these shorthands. Until I started to notice that OMG was creeping into my usage. Now, I have to tell you that my favorite way to experience OMG is when someone says it out loud: “Oh-em-gee.” But it’s all right if you write it down too. Or even type it.

However, I’ve noticed that I’ve started using it in my written work (and by “work,” I mainly mean “emails”) because it’s easy. And because then I don’t have to worry about the comma (Oh, my God or Oh my God), and I always worry about the capitalization of “God” because if it’s a name it should be capitalized, but if it’s just my god, then maybe it shouldn’t, but oh jeez, then what if I offend someone because “God” should always be capitalized? Or, even worse, what if I offend people just for saying oh my God when I am clearly doing so in vain? Because I do know people who are hurt by that, and I don’t really want to hurt anyone over that.

Hmmm. I could pretty much have just said the following instead of all of the above: You may start to see LOL speak and emoticons slipping into my words more often. Sorry.

OMG. :)

Autism Unexpected: Bob Marshall, How Dare You Call My Child a Punishment

There are a lot of groups to pick on if you’re a politician, but State Delegate Bob Marshall made a bad choice coming down on disabled children when he called them nature’s punishment to women who have aborted their first pregnancy.

“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically,” he said Thursday, speaking at a press conference to oppose state funding for Planned Parenthood. “Why?” he continued, “Because when you abort the first born of any, nature takes its vengeance on the subsequent children.”

Marshall, a Republican, has since issued more than one statement on his website proclaiming his support for disabled children and claiming that his remarks were misinterpreted by the Capital News Service, which first reported the story with the inflammatory headline, “Legislator: Disabled kids are God’s punishment.”

It is true enough that Marshall never flat-out called disabled kids “God’s punishment,” but in words that no one is disputing, he clearly said that nature takes vengeance on women who have abortions by causing subsequent kids to be born handicapped and then followed those statements up with words about the Old Testament and “special punishment.” (Audio here; for video, go to Marshall’s website.)

Mr. Marshall, I don’t much care that you have reinterpreted your statements after they came under fire. What I do care about is that you told my disabled child—and every other disabled child—that he is a punishment, that he is less than, that he is wrong. You have also told him that his mother is wrong. You have created a situation where someone has to be to blamed for disability.

You say that you have “devoted a generation of work to defending disabled and unwanted children.” I don’t know your record because I haven’t followed your career, but working to defend children starts by accepting them as valued and right. You can’t say in one breath that these children are fundamentally flawed by their mother’s “sin” and then turn around and claim to defend them.

If you really do support people with disabilities, continue your support of health insurance benefits for children with autism, find other ways to advocate for both children and adults with disabilities, but know that you must treat them with respect. Show us with your actions that you really do value this segment of society. Prove us doubters wrong by standing up tall for individuals with disabilities.

And always remember that words hurt—just as your words hurt me and my family. My disabled child has never and will never be a punishment. I value him, love him, and am grateful for his perfect autistic existence every day of his and my life. His being is a gift, and could never be described as “nature’s vengeance.”

Originally published at Autism Unexpected on February 23, 2010.

Autism Unexpected: Temple Grandin’s Mother Offers Words of Hope

Because of the new HBO movie about her life, Temple Grandin is currently just about the most famous person with autism in the United States today. Grandin has always been quite famous in autism circles, with suggestions to read her books being some of the first suggestions many new autism parents get.

Grandin is an incredible woman, autistic or not, but she didn’t raise herself alone. Her mother, Eustacia Cutler, whom I saw speak at an autism conference last week, took on much of that. I don’t know a tremendous amount about Grandin’s life, being one of those people without access to HBO and having read only one of her books, but I admire her a lot. After listening to her mother speak, I admire Eustacia Cutler a great deal as well.

It was lovely to sit in a room with dozens of other people star struck by this 80-something year old woman who spoke about raising an autistic child in the Bettelheim days, when it was commonly believed that autism was caused by frigid and unloving mothers—refrigerator mothers.

She eloquently spoke of the many struggles she faced as a young mother with an unsupportive husband. By doing so, she was encouraging her rapt listeners to keep fighting as well. Although we are in a different era than when her daughter was growing up and autism is much more understood, the path of parenting an autistic child is still not an easy one.

Cutler had many wonderful things to say about people with autism and their characteristics. “These [autistic] traits endure because they are useful to the species,” she said after encouraging us to help each other: “By [mentoring each other], we change each other.”

She didn’t offer easy answers—probably because there are none. Each parent of a child with autism must beat their own path, as each person with autism must do. “There are no answers,” Cutler said. “There are only choices.” Each of us in the room jotted down her words on our notebooks, wiped away a tear, or thought of ways to apply her wise and witty words to our own lives.

See, Cutler already did what most of the parents in that room want to do: She helped raise an independent, happy, successful, autistic person. She is hope personified. Not all of our special kids will grow up to get doctorate degrees and live independently. But some of them will. And many of them will be happy, healthy, and successful in their own ways.

As Cutler said of her daughter last week, “Temple is not cured. Temple is fulfilled.”

What more can any of us want for our children?

Originally published at Autism Unexpected on February 22, 2010.

His Life Was Short, But He Accomplished A Lot

I had a whole bunch of photos and an entire page of scrawled notes that I was going to put together into a most excellent and hilarious post on the birth of a frog.

“We Have Frog!” it was going to be triumphantly titled.

It was crazy. One day he had a long tail, and the next day his tail was short and saucy.

Plus, he was breathing air.

He was flaunting his frogness to his tank buddy.

Then he moved into his cave.

Can you spot the frog?

So we fed him.

Now, can you spot the prey? We put fruit flies in too.

But, you guys, I have sad news. There is no easy way to say this. I came downstairs this morning and excitedly looked in the tank to see what our new friend was doing.

He was upside down on the bottom of the tank, arms and legs outstretched. It was horrible. Alex vigorously tapped on the side of the tank as if he were merely sleeping in an odd position. If you want to know how bad I feel about the poor little frog, you should notice that I didn’t take a photo. That should tell you something.

I have no idea what happened to him. Did he drown? Did he choke on his cricket? Did the stress from yesterday’s tank cleaning/feeding/photo shoot do him in?

Is it my fault?

Sam took it pretty hard. Jack and Quinn were more curious. Alex stepped up big time and used a slotted spoon to carry him to the toilet for his burial ceremony.

Of course, Alex then watched me decide to throw our newly purchased crickets away too, only to say, “Oh, so we’re going to escalate it to mass murder, huh?”

And yeah, I feel bad about the crickets too, but it’s not like I could release them into the frigid winter air and tell them to be free.

I tell ya’, the first half hour of my morning was a pretty serious drag and had a high body count.

R.I.P., little guy.

I Tip My Hat to You

You guys. I’m speechless. I am constantly floored by you, my readers and commenters. You are all so wise and thoughtful. You blew my mind, this time in a good way, with your comments, emails, and tweets after my last post.

THIS is community. (And I know I shouldn’t be surprised, but I am constantly amazed by this community.)

THIS is why social media is powerful.

THIS is why social media really matters.

So many of you came out of the woodwork to give me moral support, stories about yourselves and your children, and some good ol’ solid practical advice—including ideas for places to find social groups for Jack as well as suggestions for proposals to take to Jack’s team at school.

I have heard from special needs parents, special educators, teachers, parents of typical kids, people without kids, and all combinations thereof. I also got comments from many of you who were previously lurking here. Thank you all. You lift me up. Your experience, wisdom, and just plain old kind words are amazing to read.

I am also especially pleased to see that I have readers with autism who like what I write. As a mother of a child with autism who will grow up to be an adult with autism, I am glad you appreciate what I say here. I want so badly to be respectful to Jack and his autism, so to hear from you on the spectrum means a great deal to me. Your presence here, and your words, are valuable and always welcome.

So thank you. There are a lot of reasons for me to write in this little space here, but you guys, all of you, are the biggest reason I keep coming back.

*****

I want to say one more thing. Jack has a good team at his school. They are good to me and to him. Some of them, including at least one who I know reads here, I consider to be personal friends. I know they want what is best for Jack, but sometimes best intentions get lost in the shuffle of everyday life, work, and a busy day at school. I am going to take your ideas and mine to them and we will work something out for Jack. I know we will. We have to, right?

A Revelation

I had my mind blown today, and not in a good way. Because of all the school days that were canceled because of the recent snow here, both Sam and Jack’s Valentine’s Day parties were held today.

I went to both of them, Quinn and a half gallon of chocolate ice cream in hand. The effect that two separate Valentine’s Day parties and their assorted sugary treats had on Quinn is an entirely different post. One that ends with him lying on the rug in the second grade classroom making shrill whistling noises at the top of his lungs. But that’s not what this is about.

What it is about is Jack and his near complete isolation at school.

I started to be suspicious when Jack couldn’t deliver his valentines based on who was sitting at each desk, but could only do it by looking at the names written on the bags being used to collect the cards. This sick feeling I had was confirmed at home when I tried to use his valentines as a social thinking exercise. For each valentine I tried to get Jack to think about the child who gave it to him. He didn’t know any of them.

He could correct my pronunciation of the names, so he knows the names, but he can’t connect that information to a person in the class.

I am horrified. Absolutely horrified.

He has been in a classroom with these kids for nearly six months. Many of them he spent a year with in kindergarten. Sam knows the names of kids in Jack’s class. Sam knows which name attaches to which kid. But unless it is a child who he knows for another reason—I’ve set up playdates, they live near him, or maybe, maybe, if they are in a small reading group with him (but even then I’m not convinced he would know them)—Jack doesn’t know their names.

He knows his teacher’s names and he knows his aide’s names. I understand that he isn’t seeking out other kids to learn about them, but his classroom environment has to be bigger than just his desk, the aide sitting next to him, and the teacher.

I have a lot more thoughts and feelings about this, but what it all boils down to is a total failure to engage Jack with the class. I don’t see how the school can say he has made progress on any of his IEP goals if he hasn’t learned the most basic social information about any of the children he spends six hours a day with.

I don’t know how they could have missed this for so long. I don’t know how I could have missed it for so long.