Thursday, July 31, 2008

"Savage" Ignorance

I wasn't going to bother commenting on this and giving him more "airtime," but this is my blog, and it's not like there's a ton of you reading it so I'll rant as I please...

Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them, "Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don't sit there crying and screaming, idiot." - Michael Savage, radio personality

My daughter has a father in her life and a strong, supporting family network around her. She doesn't "act like a moron" or a "putz," nor can she "act like a man." My daughter isn't "ill;" she has a neurobiological condition, something that the doctor of nutritional ethnomedicine should have some understanding of, even if he's a PhD, not an MD. 

What Michael Savage, nee Weiner, is is a hate-mongering, misinformation-spewing ass, with no sensitivity or tolerance. Supposedly, he does believe that some cases of autism are real, and that these kids are hurt by any overdiagnosis he claims occurs. But apparently he doesn't think that those same legitimately diagnosed kids would be hurt by comments like his. And many more hurt with the comments of not having a father - many marriages touched by autism end in divorce. I've heard 80%, but that number is not verifiable; it is clear that it's higher than the national average, though. So throwing "you've got no daddy" at a child who indeed has no father is just cruel.

Here's a diagnosis for you "Doctor" Savage: Antisocial Personality Disorder. From the Diagnostic & Statistical Manual (DSM) [the bible of head docs]:

The essential feature for the diagnosis is a pervasive pattern of disregard for, and violation of, the rights of others that begins in childhood or early adolescence and continues into adulthood due to the lack of love and care for the child. 
Three or more of the following are required:
1. Failure to conform to social norms with respect to lawful behaviors as indicated by repeatedly performing acts that are grounds for arrest;
2. Deceitfulness, as indicated by repeatedly lying, use of aliases, or conning others for personal profit or pleasure;
3. Impulsivity or failure to plan ahead;
4. Irritability and aggressiveness, as indicated by repeated physical fights or assaults;
5. Reckless disregard for safety of self or others;
6. Consistent irresponsibility, as indicated by repeated failure to sustain consistent work behavior or honor financial obligations;
7. Lack of remorse, as indicated by being indifferent to or rationalizing having hurt, mistreated, or stolen from another.

Were you abused as a child, is that why you lash out at everyone the way you do? Hmm... I think Michael Savage is a threat to himself and others. Better lock him up!

Wednesday, July 30, 2008

Playing in the Ocean for the First Time

I think my family can conclude that Diana enjoyed the beach. Between this and the pool, we could hardly get her out of the water.

Tuesday, July 29, 2008

Flew Like a Pro

I was astonished to learn that Diana flies like she's been doing it all her life. She waited patiently in the airport (my least favorite part of flying), boarded like there was nothing new, was excited on takeoff and landing, watched out the window for a while, and played Tetris on her Gameboy when she wasn't watching the clouds. All the changes, new things, strange surroundings, ears popping, odd noises... she acted like it was all nothing. She flew better than Mom did, in fact. Mom is nervous of takeoff and landing, jittery about the noises, and generally happier once back on the ground. Hers was the hand needing held, not Diana's. Having the Gameboy made a critical difference, I think. Had she been really bored on the flight, it might have gone very differently. Another thing that may have helped was that I asked to preboard on the basis of disability. I told the ladies at the gate that Diana was autistic, and asked if it was possible to preboard. Both Southwest agents handed over the passes without argument or comment, though in San Diego, the woman did make sure that it wasn't a dozen people in the party that were requesting to preboard.

I don't know how well she remembered my brother and sis-in-law. She didn't ignore them completely, as she typically does with strangers, but she wasn't precisely social, either. One day at the beach, my brother tried to teach her to boogie board, but she was perfectly content to splash in the waves. Krista managed to show her how to jump over the waves, so you don't have to fight the surf as you stand, but she wasn't able to get Diana on the board, either. She got a little sunburnt, and after that we made her wear a t-shirt over her swimsuit (which did not thrill her). One day, between the beach and the pool, she was in the water at least 4 hours - probably closer to 5. She was in unfamiliar surroundings the whole time we were out there, and but for a couple of incidents, was about the most well-behaved child you'd ever see, autistic or not. 

We had 2 not-so-great things happen - some of it the result of a very long day. The first was when we discovered that Diana had taken something from a store that I hadn't paid for. None of us saw her do it, but there it was. We told her that taking things without paying was bad, that she couldn't do that anymore, and she got upset because she was being told "no" - not her favorite word. (I was able to call the store the next day and pay for the thing, a shiny keychain with glass heart charms all over it.) Later that night - actually it was the wee hours of the morning - she'd "lost" one of the plastic goldfish she got at the aquarium, and I had to find it before she'd go back to sleep; then she lost another... It was late, we were all tired, and Krista had overdone it that day so she was in pain and trying to sleep. I lost my cool completely, I was ready to throw her off the balcony just for peace and quiet. Mom was able to settle us both down, eventually, and the three of us went for a walk on the beach to cool off and clear our heads - at 3am.

Our returning flight was delayed, so instead of getting in at 11pm, it was 11:40, and it was probably 12:30 by the time we got back home. By then, Diana was exhausted and a little whiny, but who could blame her? She (and I) were ready to come home; it had been a long week, and we were all ready for our own beds. She got up this morning about 10am, still pretty bleary-eyed, and immediately settled in to play her favorite Playstation game: We ♥ Katamari. It was a long week. We had a great time, but it's always nice to be home. And now my husband and I know that we can take flying vacations with her (once the price of flying comes back down).

Monday, July 21, 2008

(Nearly) Ready for Take-Off

The bags are packed, the carry-ons inspected for prohibited items (had to move the spare lithium batteries to the checked bag), and now comes the fun part: waiting.

Diana is being allowed to take a few of her "friends" in a carry-on of her own: 2 Groovy Girls, 2 PBS friends (puppy Clifford and Daffodil), Dora the Explorer, and 1 Sailor Moon doll - and Fuzzy, of course, her no-longer-fuzzy baby blanket. At the airport, I'll be giving her a present to help with the wait of 4 more Groovy Girls. I also have Gameboy loaded with Tetris Worlds, tiny markers and paper pads, should she be so inclined. I hope this will keep her occupied. *crossing fingers*

I really (really!) hope that we all survive the trip, and that we don't have to come home via rental car because she refuses to get back on a plane. I don't think that will happen, because she is such a good traveller in the car, but she can be unpredictable. 

Friday, July 18, 2008

Decided not to go

With the price of gas being so high, and Diana's reactions far from predictable, we decided not to drive to Indiana Beach. Instead we hooked up the sprinkler and let her play on the trampoline with it. She had plenty of watery fun, we didn't drive an hour and then have to turn around and come home because she hated the crowds, and I was able to work on a client's website.

I think we made the right decision. She's going to be plenty stimulated with the California trip coming up on Monday, and if we'd made that drive today, it could have potentially put her in a mood disinclined to cooperate and tolerate any kind of crowd. Tomorrow, we'll read the books I got her about air travel, aimed at kids and reassuring them about what's going on.

Thursday, July 17, 2008

Summer vacation is driving me crazy

When Diana and I are forced into one another's company, unrelieved, for weeks at a time, we both get a little tired of each other. She, like many children, has a real knack for knowing the difference between fooling around on the the computer, and working. She only interrupts when I work. Lately, she has taken to standing right next to my chair and talking directly into my ear. If you don't think that's maddening, think again.

Marc has a few days off from work, and has suggested we do something fun, the three of us, on Friday. It's going to be hot, so that really leaves out going to the zoo, and so many other things are outrageously expensive. I suggested Indiana Beach, and rather than go into the park where all the amusement rides are, actually go to the beach. I didn't realize how long a drive it would be from here. And given that it might be a disaster (more on that in a sec), I don't know if it's worth the risk and the gas money.

In the past, we have tried to take Diana to things we thought she would enjoy. When she was a small child, still in a stroller, Marc took her to Navy Pier when they were having a Sesame Street thing at the children's museum. It was noisy and crowded, and she shut down. I had to work that day, so I wasn't there to see, but I did see the pictures. Her face was blank; the lights we on but no one was home. It was creepy. It was sad.

When she was older, we took her to a model train show, since she enjoys her wooden train set so much. It was crowded, so much so you could barely see anything, and it was almost more of a retail situation than exhibition. She wanted to touch and could not. She doesn't like to hear "no" any more than any other child.

We took her to Boo at the Zoo once, where there we hundreds of jack o'lanterns carved and lit. She wanted to get popcorn, a sucker, and go home. And whined when we didn't leave immediately.

Most recently, we went to Starved Rock. It was my birthday, and I wanted to do something I wanted to do. (How selfish is that?) She was OK with that until she realized that she couldn't get down to the Fox River to play in the water. Diana does not hike. She started complaining the minute she saw that she wasn't going to get to play in the river. We were only there about 90 minutes. We spent more time in the car.

One thing she does enjoy is riding the Metra train into the city and going to the aquarium. For a few weeks, she and daddy were going in every Sunday. We bought a membership, and she rides the train free on weekends, so this was a really nice and reasonably inexpensive entertainment for her, and us.

I am stressed about the California trip. She may be perfectly fine. It may be a disaster of epic proportion. I need this vacation, too, but mostly I don't want it to be a disaster. If all goes well, it opens the door to other possibilities for us. It would be nice to take family vacations, all three of us, and have them be pleasant. Mostly what we've been doing is taking trips that don't include all of us. 

Wednesday, July 16, 2008

Flying with Autism

In just a few more days, my mother and I are flying to California with Diana. Diana's never flown, never been in an airport, never been to California. We're visiting my brother and sister-in-law, and this is actually the third time we've tried to do it. The first two times, the trip had to be cancelled and rescheduled. Here's hoping the third time's a charm!

I've nearly convinced myself that it will all be fine. She's good on long car trips, never complaining. She's surprisingly well-behaved in crowded situations. However, she is not patient. I really hope the novelty of the airport and her curiosity will eat up the time spent waiting for the flight. I have books for her about flying that we will read as well as bring along, and I have a present I'll give her on the way to the airport: more of her coveted Groovy Girls dolls. (If you're a parent and haven't discovered these terrific cloth dolls, check the link - they really are wonderful dolls.) I'll have plenty of snacks. It's a non-stop flight, so she's going to be hungry. I think I've covered everything I can.

Once we get there, she will find that we're staying steps from the ocean, and the condo has a pool. The kid adores water; interesting for her being a Fire sign and all. (Though Eastern astrology makes her a water sign. Hm...) My fabulous sis-in-law used to teach first grade and is wonderful with children. She's so excited that we're coming, and I know she will be wonderful with Diana, if Diana will let her. She hasn't seen Krista in a long time, and has a tendency to ignore people she doesn't know - they just don't even show up on her radar. We're going to visit Birch Aquarium (we're members of the Shedd, it's one of her favorite places), build sandcastles, and splash in the pool.

We were supposed to go back in May, and Diana's teacher and speech therapist at school did a simple travelog for her to write in, in addition to the homework we were going to do since she was missing a week of school. I have the travelog still, even though we didn't go, and I think it will be a very interesting thing to have her write what we did, and choose from my pictures to paste in it. She's got quite a good brain in her head, and when she shares what's in it, it is often astonishing.

I am very much looking forward to this trip. I adore my sis-in-law (my brother's a doofus, as brothers often are), and traveling with Mom is fun. I don't want to drug my child, even with Benedryl, and the more I consider it, the less I like it. A few years ago, we drove to Virginia for a wedding. She was stuck in the car for hours, much longer than we will be in the airplane, and never once complained. Not once. Why would flying be any different? (Other than the noisy airport, the crowded plane, the popping ears....) I really want this to be a good trip. It will let us consider more vacations in the future - though with the price of gas and its effect on air travel, perhaps not. We shall see...

Tuesday, July 15, 2008

Adventures with Autism: The Beginning

My daughter, Diana, was diagnosed with autism in December 2000. She was 3 years and 4 months old. 

She is our first and only child, so we had nothing to compare her behavior to, nothing to look at and say "something's not right, here." When she was 2, her pediatrician insisted we have her hearing tested, because she didn't have the number of words expected of a two-year-old. The test confirmed what my husband and I knew: she heard fine. Next, the doc wanted us to take her to a speech pathologist. She was 3 then, and the test results were that her language was no higher than that of an 18-month-old. The pediatrician then wanted us to see a child psychologist, "to see if there's anything else going on." That's how she phrased it, no warnings of autism, just "anything else going on." She gave me a number for the University of Chicago to make the appointment.

When I called the U of C, I was told the waiting list was at least 6 months. This was completely unacceptable. Now that the doctor was being so determined something was wrong (and we agreed that her language was not where it should be), I wanted to know what it was. At the time, my brother was dating a woman who worked as a physical therapist. She recommended someone that she had worked with in the past. So I called him, and while there was a wait, it wasn't 6 months. 

I accompanied Diana on all of the testing sessions, answering questions, often on the floor while interacting with her. I filled out a long questionnaire - something like 600 questions. It was strange knowing I was as much under a microscope as she was. (Had I done something to make her like this? Did I not talk to her enough, letting her play alone as she desired?) Turns out that I was doing everything I could, under the circumstances.

The night we got the diagnosis, the doctor requested that my husband and I come alone, so there would be no distractions. Diana stayed with my brother and his girlfriend. I had to drive myself, as Marc was coming straight from work. The December night was cold and sloppy, the snow was more slush by the time it hit the ground. The roads and the traffic were crap. The psychologist was actually quite gentle with his pronouncement. He led us through his findings, even commenting on something I'd said in one of the sessions. "It's like playing a game where I don't know the rules," I'd said about trying to play with Diana. He told us what he'd observed, things we had observed: lining up markers and crayons but not coloring, playing with the wheels of cars but not rolling them, flipping dolls eyes open and shut but not playing with the doll. The lack of significant eye contact, the dislike of being held, the absence of pointing behavior. By now, my anxiety was high. I'd spent the afternoon researching autism online. He gave us test results, comparing her with other normally-functioning children. I knew. I knew what he was about to say. Then he did, and the rest of that evening is a little blurry.

I remember shaking his hand, eyes burning, thanking him. I remember driving in the slush, crying, trying to see the road. Arriving at my brother's to collect our child, tersely telling him something along the lines of "he said she has autism, I can't talk now," and driving her home. I don't remember what we did with her once we got to the house. I remember calling Mom and Dad - Marc was in his office ordering a pile of books off Amazon. My parents' first words were "What can we do?" I was steadier then, than when I was driving. My science background from high school and college saved me; I was matter of fact, said we had a lot of reading to do. The call Marc made to his family was not as good. My mother-in-law took it hard, still does. It was the worst night of my life.

During the Christmas holiday, the story was repeated, over and over. People expressed sympathy like someone had died. I had to be strong because the alternative was not an option. I saved my sobs for when I was alone. I still do.

That February, Diana started school in the special needs pre-kindergarten class. I fought with the insurance company to get her speech and occupational therapies. (Evil, penny-pinching, number-crunching, pencil-pushing...) "We don't authorize services for speech delays," I was told. "She isn't speech delayed, she's autistic. The delay is the symptom, not the diagnosis," I raged. "You have the doctor's diagnosis in her file!" "No, we don't." So we faxed everything - again - along with information from the DSM-IV, with the full definition of autism, and anything else the therapist could think of. I won. But was told we'd have to do it all over again in a year's time. I'm still winning. This is my daughter, and if her (new) pediatrician thinks she needs these therapies, she will get them. Mom and I were prepared to drive to the insurance company's HQ, and sit with a screaming, out-of-control autistic child in their lobby until they agreed she needed the services I was requesting. It was never necessary, thank all that's holy, because the truth of the matter is, Diana is really well-behaved (except when she isn't) and getting her to become a demon-child on cue would have been a dicey proposition. She typically reserves all her really nasty behavior just for me, and sometimes Daddy.

Diana is almost 11 now, starting 6th grade in a special needs class at the middle school this fall. Puberty has reared its ugly head, and that scares me more than about anything else ever has. The roller coaster ride of the last 8 years has made me, at turns, depressed, angry, hopeless, hopeful and scared. It's affected our marriage; how could it not? But we're sticking, clinging to each other when we can, because no one else would put up with either of us. It's a hard road to travel, but even harder if you have to do it alone.