Sunday, December 21, 2008

Guarding the Tree

It's 2 in the morning, and I am wide awake, guarding the xmas tree from a certain impatient someone. She's sleeping (I checked), but if I don't stay on guard, she will be into the tree and opening presents before first light. So here I sit, at my computer when I should have my own visions of sugar plums, instead of acting like the tree police.

She's so excited, so eager. And she will undoubtedly not get whatever it is she thinks she must have and Christmas will be ruined - ruined, I say! (She is nothing if not a drama queen.) Still, I hope that she enjoys her gifts. Then we get to do it all over again on the 25th, and again on the 27th. We're going to need a bigger car, if my mother-in-law got as nutty this year as last, and I know my mother went berserk. (Such a shame no one loves this child, and won't buy her nice presents...)

I just hope she doesn't get it into her head that she has to play outside. The high is only supposed to be about 5F. At least we'll have a white xmas.

Wednesday, December 17, 2008

Bad Days

Diana was reluctant to get out of bed this morning, in spite of the snow (which she loves) and a field trip today (which she also enjoys). When I firmly told her to get up, now, that got her out of bed... on the wrong side.

Talking to her can be like walking on eggshells. One word misspoken, one slight raise in volume, one change in tone, could set her off to a place of nonsense phrases she will repeat as a comfort thing, that drives me crazy. That's what happened this morning. So I suppose her foul mood is all my own fault. *sigh* How do you gently coax a lazy kid out of bed? Some mornings I succeed with humor; this morning, though, that didn't work. This is one of the things I hate most about autism, and how it affects her. One tiny thing could set her off for a whole day.

What "triggers" do your kids have, and how do you handle them?

Tuesday, December 2, 2008

Video Crisis Update

The replacement video of Learning to Share arrived while Diana and Marc were in Iowa. I put it in front of her computer so she'd see it when she got back, and laughingly told Mom I figured she'd be in the house maybe 15 seconds before she spotted it.

I was wrong.

She saw it through the window of the back door before she even made it IN the house. I opened the door (her hands were full) and she was staring right at it. She dumped the things in her hands in the kitchen, and grabbed the video with her coat still on, and made for the bedroom and the rest of her videos. As she scooted off, I prompted her, "What do you say?" "Thank you!" Over the next two days, she'd appear in the living room, video in hand, and tell me thank you again, and again, and again. Marc suggested the video's absence had left a big, gaping hole in her life. I suspect he was being funny, but her reaction suggests that he wasn't far off the mark.

Once again, I have proven I am Übermom - capable of fixing any problem, righting any wrong, none are too small. Unfortunately, things like melting snow are a bit beyond me, so she will be quite angry when she gets home and tells me she wants more snow. And I don't produce any.

Rash update: Apparently it was the detergent. After rewashing everything in Tide Free and Downy Sensitive Skin, her welts are fading fast, and no new ones have appeared since she been wearing clothes not washed with the other stuff (Arm & Hammer w/ Oxy Clean).

Wednesday, November 26, 2008

Holy Moly... That's a LOT of Dolls

Diana LOVES the Groovy Girls dolls. For that matter, so do I. I love the multicolor, multiethnic, positively themed soft dolls. Major kudos to Manhattan Toy for this line. Diana has the same sort of thoughts on collections as I do: she needs all of them. So, periodically, I have to do a "census" of the girls (and a few Groovy Boys), to update the list of the ones she has and give the list to Mom for when she does her shopping.

I needed to do something to get these dolls to where they were off the floor, where she could see them and play with them, and where they would take up the least amount of room. I got an over-the-door shoe rack to hang on her bedroom door, and thought I could make it work. Here are the photos:

Here's the ersatz doll rack, Diana crouched in front of it. Note that it's hanging on the outside of her door. She decided a while back that she couldn't stand to have her door closed at night, and since her room tends to have the biggest temperature extremes in the house, with the door open, it's not as bad. And yes, that is a tree painted on the wall in the corner, and a beaded curtain hanging in front of her doorway. (We discovered that the rattle of the beaded curtain acts as an "early warning" device when she leaves her room, either late at night or early in the morning. Handy!)

Closer view of my doll with all of her dolls. I wonder how much of Diana's hairstyle was inspired by Groovy Girls?
Side view, from the hallway (beaded curtain pulled back). The shoe rack is designed to hold 18 pairs, or 36 shoes. With 69 dolls on the rack, not all of them fit into the loops. That includes three dolls that have duplicates. There is a 70th doll who's MIA. I know she has it, I just couldn't find it to hang her with the others.

So again I say... Holy Moly - that's a LOT of dolls!

Tuesday, November 25, 2008

Books, Manuals, Dianese

There seems to be a disproportionate number of books for Asperger's Syndrome (AS) than "plain" autism. Is it because those kids and adults have more potential to live so-called normal lives, and as such gain more attention for their ability to live alongside the rest of us?

I received the Fall 2008 Jessica Kingsley Publishers catalog today. In it are 99 titles, 30 of those are aimed primarily at people with (or parents of people with) AS. This is above the titles that are about Autism Spectrum Disorder (ASD) which include AS. There are a few titles aimed at the opposite (low-functioning) end of the spectrum, about 9. There are books on teaching and coping and general treatment and diet interventions, but really nothing for middle-of-the-road kids, like my Diana. Marc thinks this is because that group is too diverse to focus on. Because it's a spectrum disorder, and each child is so different in the way they present, he's probably right. It's still frustrating, though.

Mostly what I've done is what I thought was right. In some cases, I've gone directly against conventional wisdom; most notably, scheduling. Diana does not have a rigid schedule. She does have things she does every week (Thursday is mall night with Daddy while I go to my dance class), but we do not have every hour of every day carefully planned. I did this on purpose, because the world doesn't work that way, and if she's to function in the world, she had to learn to cope with change. And you know what, she has. Maybe that wouldn't have worked with another child, more significantly impaired, but it worked with her. So following my instincts have gotten us to age 11 without too much trauma. I've made some mistakes, like not preparing her well for the trip Marc and I took to Hawaii (she stayed with Grandma and Grandpa, and still has anxiety issues over that), but for the most part, I've done OK. She's a happy kid, sometimes incredibly mercurial, and that's the thing I have the most trouble with, and the thing I want some help with.

I eagerly poured over the catalog hoping for a title to jump out at me and say "this is it, this is the manual that will help you with Diana!" - I really should know better than that by now... It would appear that I am writing my own manual for her, but it's written more like a non-native speaker. I speak Dianese, but I wouldn't say I'm fluent. When she was diagnosed, I told the psychologist, "it's like she's trying to get me to play a game with her, but I don't know the rules." You know what? Eight years later, I still don't.

Sunday, November 23, 2008

VIDEO CRISIS!

[cue dramatic echo]
VIDEO...video...deo...o CRISIS...crisis...isis...is!

When Diana can't find a video she has carelessly mislaid (or has stopped working and been thrown out), conniptions are had. She's been watching Sesame Street on video, nearly to the exclusion of anything else since she was a toddler. I had hoped we'd "graduate" to something a little older for her by now - she's 11 - but alas, no. She stacks the VHS tapes like bricks sometimes, hoards them like a kid with Hallowe'en candy in March, and knows what video it is 5 seconds into the tape's running, just by the opening stuff. She knows them all by heart. Every. Last. One of them.

Tonight, she decided she wanted Learning to Share. I got her out of the bath, and was preparing her hair for all the ribbons and stuff she wants installed there, when she said she wanted that video after I was done. (Spoken in Dianese, of course, it sounded more like "first ponytail, then Learning to Share.") So I asked my husband if he could find it amongst the pile of tapes at the foot of our bed (where she watches them, on the only working VCR in the house), while I fixed her hair. No luck. *sigh* Unsurprisingly, she's not happy about this. So I ordered a used copy from Half.com for 80¢, and got expedited shipping.

Her other thing is to request the book-and-tape sets advertised on the VHS tapes at the end of the shows. Not only are VHS tapes obsolete, but the cassette tapes mentioned are, too. How do you explain obsolescence to a child, let alone one with autism?! *SIGH* 

And to make things even more exciting, she has a weird, itchy rash. No fever, appetite is normal, so I don't know what this is, unless it's an allergic reaction to something. I'll keep her home tomorrow unless it's faded, since I don't know what it is, and try to get her into the doc first thing. 

Wednesday, November 12, 2008

Hypnotism?

I think Diana is hypnotizing her teachers. There's no other explanation for why every parent/teacher conference or conversation is the same. "She makes us laugh." "She's a lot of fun." "She tries to manipulate us when she can." etc. They all claim to love her, are defensive of her when I comment (affectionately!!!) that she's rotten, and talk about how much they miss her whenever she's not in class. Clearly, these experienced teachers are all mesmerized by something my kid's done, and now she's gained control of the class, or at least the teachers. It's weird! 

I adore my child. I am "lucky" enough to see her at her best AND worst. Apparently, she's mostly at her best at school - this is a good thing! But even if she's well-behaved and hardworking, that doesn't account for the humor and affection I hear in their voices when she does something not-so-good (like stealing one teacher's lunch or figuring out that the spell check was on while she did a spelling test). How does she do it?? Even when she misbehaves, has a fit, or refuses to do something, they all act like she's the funniest kid in the class! *sigh* I swear, if not for the autism, she'd be the most dangerous politician the world has seen.

Same track, different train; her first quarter report card was quite excellent, especially for being in a new building, and a higher stress level: 4 As, 4Bs.

Saturday, November 1, 2008

What's Burning?

My husband smelled it a few seconds before I did. *sniff* What's burning? He gets up to investigate, I follow. Diana's in the kitchen eating cold pizza for breakfast. *sniff* What's burnt? No, not the toaster. It's coming from the microwave, but there's nothing in there now. I look in the garbage, and there is a rock-hard Krispy Kreme donut, slightly charred, in there. Apparently she didn't recall Daddy's warning that a donut only needs 6 seconds. Now the house smells like burned sugar.

It's nice that's she's getting some independence. Nice that she didn't kick us out of our own bed on a Saturday to get things for her. But I sure wish not to wake up to the smell of something burning again!

Monday, October 27, 2008

School IDs

The middle school requires the students to wear an ID on a lanyard at all times. I've had to replace hers already; the teacher thought Diana had lost it, no one could find it anywhere and she wasn't talking. Well after she and Daddy cleaned up her room a bit this weekend, I walked into her room to put away some clothes and found TWO of the things hanging on her door knob. Clearly there was some miscommunication between my husband and I, because I would have sent one of them with her today had I known they'd been found.

Diana loves photos (but not necessarily having her picture taken). She was clearly hoarding these for whatever reason, even though she's been told to have one of them on at all times for school. I wonder how many "replacement" IDs I'll end up buying by the end of the year..?

Sunday, October 26, 2008

Another "Fun" Autism Side-Effect

It happens fairly often with us: one parent is at home alone with Diana, dealing with all the various challenges and "bad days" without respite. There's a not-so-fun side effect of this, and that's the returning parent receives the fall-out of a bad day/weekend of a frustrated partner who's had no break for hours or even days.

I suspect this has a big role in the divorce rates with families who have children on the spectrum....

Sunday, October 19, 2008

The Things You Do as a Parent...

"Circle pizza?" my daughter requests.
"Sausage or cheese?" I asked her. 
"Cheese pizza!"

So I cook my little monster a cheese pizza on the Pizza Pizzazz (we use this appliance a lot). When it's finished, I cut it in half, preparing to slice it into eighths. "I want circle pizza?" Her voice rises in a question, even if she's making a statement. "You want the pieces in circles?" "Yes." She's definite on that.

I learned something this afternoon: You cannot use a biscuit cutter to cut a crisp crust pizza. The best you can manage is to create an outline in the cheese to follow with the pizza wheel.

I informed her she had to eat the little pieces, too, the pieces left over from the circle-cutting. (Which she did.) She's well on her way to eating the whole thing, in fact. Poor underfed thing... *rolling eyes*

In the past, I have also made rectangle pizza, square pizza and triangle pizza. Circle pizza is the most challenging - at least until the day she asks me for "Star pizza, Mommy!"

My husband looks at me with indulgent sympathy, "You're a good mom." Or a crazy one.

Friday, October 17, 2008

Went to the Movies

Yesterday, Diana's class has a field trip to the theater. I'm not sure I 100% approve of using school time for movies, and I'm not sure I approve of the movie they saw (The Express), and I was more than a little apprehensive about Diana's ability to tolerate Surround Sound. But the way my husband and I saw it, if it was a disaster, better on the teacher's head than ours. 

We've never taken her to the movies because of her auditory sensitivity, her lack of patience, her apparent inability to sit still for that long, and her distaste of crowds; in short, sensory overload. So, at 11, she saw her first movie, and it was about Ernie Davis, the first black Heisman Trophy winner. My little girl's first movie in a theater was about football and civil rights. And according to her teacher, she "was WONDERFUL! No problems at all, in fact I think she really enjoyed herself." Of course this was a field trip with her class, she had her own popcorn to munch, and fidgits that her teacher brought along for emergencies. If we tried to take her to a movie, it may be another story entirely... but it's a start. I worried for nothing, and frankly, I'm glad. I didn't want her to have a bad time, I just didn't want to be the one in charge if she did. *smile* I have had more than enough of those experiences, thanks.

Monday, October 13, 2008

Hawai'i Bound! ...Eventually

So I've been talking to my husband, talking to my mom, talking to Diana... all about Hawai'i. Diana is the least receptive.

Last year, hubby and I were lucky enough to take a magnificent trip to Maui (Diana stayed with my parents). He won the trip from a drawing  at his company's Christmas party, or we would never have gone. Before we even left the island, we were talking about coming back. When we got back from out week in paradise, we learned that not only was Diana not pleased that we left her for a week, but that now she's afraid that every time we visit Grandma, she's going to get left again. "We are not going to the Hawai'i," she tells us. "I promise," she parrots our reassurances.

Well, then we discovered the Hawai'ian Airlines frequent flyer program. And the Microsoft Live Search Club. Now it's a question of when, not if, we're going. Dad is a happy homebody, but Mom wants to go. And we're not leaving Diana behind again, especially knowing how well she flies. (That trip to California was a breeze!) Traveling with Diana will mean that we don't get to do some things, at least not all of us together. I don't know if we will be able to take her to a luau - Diana, eat kalua pig, and *snort* poi? [insert maniacal laughter here] Unless there's cheese pizza and chicken nuggets at the buffet, we can forget that. 

So now that we have established that we are going to the islands, we had to discuss which island in the chain. Maui was wonderful and I would love to go back, but it's not quite Diana-friendly (she's a pretty urban kid). The Big Island of Hawai'i doesn't have enough paved surface, either. Lana'i, Kauai'i and Moloka'i - too exclusive and rustic (not enough fast food). That leaves O'ahu - the most densely populated, urban and modern of the island chain.* 

Unfortunately, O'ahu would be my last choice, for those very reasons. I like to get off the beaten path. Diana's idea of "off the beaten path" means getting off the Metra train and walking on a sidewalk to the aquarium. But if we're going to all have a good time, concessions must be made. And in this particular case, catering to the needs of an autistic child firmly entrenched in the 21st century. While Marc and I were perfectly happy with our Hana guesthouse room with no television (our Ka'anapali room did), Diana would be mortally offended by such a thing; although she was pretty good in Oceanside without 24/7 TV noise. We grownups, we were in Hawai'i - who needs TV?! 

So what does this mean? It means that for every Diana-friendly activity, there will be something she doesn't want to do as much [read: "at all"]. So, daughter-dear, that means "First we go to Shangri La, then we go to the zoo." Fortunately, she understands perfectly well "first this, then that," even if she doesn't much care for whatever "this" may be. We have time to plan, so we also have time to work on her attitude toward Hawai'i - she already loves flying, the beach and hotel swimming pools, so we're more than halfway there!

*Population by island (2000), rounded to the nearest 1000:
O'ahu: 876,000 (49 McDonald's, 23 in Honolulu alone!)
Hawai'i: 149,000 (9 McDonald's)
Maui: 118,000 (11 McDonald's)
Kaua'i: 58,000 (5 McDonald's)
Moloka'i: 7,000 (0 McDonald's)
Lana'i: 3,000 (0 McDonald's)

Sunday, October 12, 2008

We're All Sick... or something...

I don't know if it's just allergies, or virus, or both, but we are all three under the weather here. Nothing seems to be helping with Diana's congestion, so I got her some Breathe Right nasal strips for kids last night, and was astonished (astonished!) when she let me put it on and left it there. I told her it was a nose Band-Aid and that it would help her breathe. It seemed to help, and she tolerated something new and weird on her face. Huzzah!

I'm for bed, I think...

Monday, October 6, 2008

Small Steps to Independence

Diana still needs assistance with her shoes, she can't tie a bow in the laces. She needs help getting dressed because she can't be bothered with details like proper undergarments (bra) and clean clothes, simply grabbing whatever comes to hand. She can't bathe herself (more like won't). But even in the face of all the "can'ts" there are a lot of "cans": She's learned to use the microwave to reheat her favorite meal (pizza), and the toaster to make a favorite snack (Eggo waffles). She's using the toilet almost independently. She *can* get dressed on her own, even if what she chooses isn't 100% appropriate.

She asks for help when she needs it, using nearly complete sentences and clear language most of the time. There are lots of things that neurotypical 11-year-olds can do that Diana can't. But given that many of her peers are also ill-behaved little hellions, I think I'll keep the one I've got, even if it means extra work for me. ; )

Tuesday, September 30, 2008

The Lone Voice of Disapproval

The Kirton family has 6 kids, all of whom are on the spectrum. They live in a 1100 square-foot 3 bedroom home with one bathroom.

Get your poison pens ready, because I'm going to be honest enough to say that I think what they have done is selfish and irresponsible. According to their site, they didn't know that their children had issues until the last one was born (they wanted to have a "larger than average family" and kept having children until "that feeling was gone").

We have one child on the spectrum and made a conscious decision not to have more children when she was diagnosed. We have a 1000 square-foot home with 1 1/2 baths, and feel crowded. I would have liked to have another child, but we decided that it wasn't safe to risk another child (possible more severely impacted) with autism, because then someone would get shortchanged. I felt I had my hands full enough with the child we had, and since many of the responsibilities fall to me, the burden would have been largely mine. Add to that, the financial cost, the lack of space, the lack of time to ourselves as a couple...

The Kirton's are "hanging in there by the grace of God," but if they'd just stopped having kids, they wouldn't have to rely on the grace of God and the kindness (and donations) of strangers. In this day and age, in this financial climate, big families just don't make sense.

I don't think they deserve any more attention and financial support than the McCaughey (septuplet) family. No one forced them to have those kids, and I don't believe God had any more to do with those kids' autism than he did mine. It's irresponsible, not admirable.

Jealousy? Hormones? Insanity?

Our lovely daughter objects to us talking. If she's at the other end of the house, she closes the doors to muffle the conversation. If I walk into his office, or he into mine, she will walk to the doorway and whine and complain. Now she's doing it in the car, too. It makes for an unpleasant drive, let me tell you! We're either silent, or talk anyway and endure the (annoying) fuss that ensues.

The only thing my mom could think of was jealousy. As in, she's jealous that we're talking and not including her. It's as plausible as anything I can come up with, but why did she wait until 10-11 yrs. to start this behavior? I am seriously considering taking her to the psychologist who diagnosed her, and demanding he fix it! (Oh, OK, I wouldn't put it quite that way, but that would be the gist of it.)

Since she can't answer the question "Why are you unhappy?" I have to assume it's an emotional issue she just doesn't understand. If the conversation continues, it will escalate to angry sobbing and screaming, and that's even more annoying than the whining. I really (really!) want this to stop.

Tuesday, September 23, 2008

Very Limited Edition Prints to Benefit Autism Speaks

My Etsy shop, Shattered Photos, is finally stocked! Eight limited edition photos (all of the ones currently listed are #1 of 10). I will give half ($20) of the proceeds of each print to Autism Speaks. I'm still in the process of stocking my main site (also Shattered Photos, not an Etsy site) with blank greeting cards and more photos (unlimited editions).

Coleus leaves

I hate politics...

But I hate the McCain/Palin ticket more. If you are concerned with autism, disability law, and how the candidates will affect them, GO READ THIS BLOG NOW: http://specialneeds08.blogspot.com/

Regardless of your political affiliation, the color of your skin, your gender or your religious beliefs, parents of kids on the spectrum MUST BE AWARE of the policies of the people they would elect to the White House.

Know what you're voting for.

Saturday, September 20, 2008

What a week...

Thinking I was on to something awesome, I joined a Street Team at Etsy, offered to take over as admin of (what I thought was) the Team's blog, got excited about doing some charity work on a global scale, and ran into a brick wall all in one week. Some philosophical and personality differences caused me to leave the Street Team, but I am going to continue to maintain the blog under a different title, Art and Autism, but with the same basic focus. After a pretty vehement "this isn't welcome," I didn't feel I had a choice. What a shame...

Friday, September 12, 2008

Autism Art

I just ran across this really amazing glass artist on ebay: Dichroic-Art-Jewelry-by-Dave! The puzzle pieces aren't the typical all-primary colors we're used to seeing, but they're unusual enough to make people ask, and give the chance to raise awareness.

I'll try to post such finds whenever I can. We can raise awareness and support a cause without looking like Romper Room, right?

Wednesday, September 10, 2008

One of the Lesser Known Disadvantages

Because of Diana's language limitations, it is sometimes hard for her to tell us what's wrong. This evening, she came to me hunched over, one hand on her belly, and asked "Does your tummy hurt?" I asked her if she had to go to the bathroom, and she whined "yeah" and went to the bathroom with no results.

When my husband got home, he asked how long she'd been that way (not long), and asked if she had a temp. I didn't think so but he took her temp with an underarm digital. (She wasn't feverish.) I felt around on her belly and she didn't flinch or complain, so I don't think it's her appendix, but it could be menstrual cramps... I gave her some Motrin and she's much happier now. 

It's really hard when we can't ask her questions and expect detailed answers. She's a lot more verbal than many autistic kids are, so we actually have an easier time than some. But it's still a little frustrating and sometimes scary when we don't know what's wrong and she can't tell us.

Homework

Last year, Diana would typically have only one item in her backpack as homework. Not so this year. She's been pretty consistently having 2 things each night, math and reading. Another year, more responsibility.

She's already managed to lose her required-to-be-worn-at-all-times student ID. There are so many kids at the middle school, they all have to wear IDs like press passes at a convention. I'm not terribly amused by that or the $5 replacement cost or the "points" they take away for not wearing one. (Token economy, points for privileges; won't work with my kid, 'cause she doesn't want the so-called privileges they are offering.)

I suppose I should be grateful metal detectors and guards aren't present... though can it be far behind?

Wednesday, September 3, 2008

Still No Apparent Issues

Some might think I was asking for trouble, waiting for something to go dreadfully wrong with the new school situation. She's changing classes, in a much larger school, has a locker, and is around older, meaner middle school kids - what could I possibly have to worry about?! We're only a week and a half in, so there's still plenty of time for things to happen, if they're going to. I'm actually looking forward to parent/teacher conferences.

Still no word about speech therapy, and I have no idea how long I will have to wait before they get another therapist to replace Becky. I think I'd be better served by finding a clinic closer to home, but then she'd just be uprooted again when we move. 

I hope that my contacting the autism groups speeds up the process for the Autism Awareness specialty plates. Guess I'll find out if/when I hear from the DOT about getting the plate I said I was interested it!

Thursday, August 28, 2008

So Far, So Good

The first week of school is nearly over, and so far, there have been no issues that I know of. She did come home with a box of crayons that were not hers. I sent them back with a note to that affect, and was told that she had had them all day, and they thought they were hers. I hope they rightful owner has them back...

She's having to get up almost a half-hour earlier than last year, and she's used to staying up later all summer. We're all struggling to get used to the change. She gets on the bus enthusiastically, and has been coming home in a good mood. I can't ask for much more than that the first week.

*sigh* I just put her on the bus. She's wearing a yellow t-shirt and green shorts, I had given her green socks (that she did put on) and told her to put on her sneakers. When the bus arrived, she was wearing orange socks, and her new pink shoes (metallic ballet flats). We're going to have to squash just a bit of her enthusiasm, or she's going to get picked on. *sigh*

Monday, August 25, 2008

Before We Can Get Those Plates...

Eight hundred and fifty people (Illinoisans) have to put their name on a list as "interested" before the state will even design it. I was told there are currently only 259 people on that list - now 260, since I added my name and current plate #. The phone number at IDOT is 1-800 252-8980 (option 4 for special plates), or you can contact them online at http://www.cyberdriveillinois.com/contact/contact.html. (I contacted through "All other questions..." and got a reply a few days later.) Spread the word!

Wednesday, August 20, 2008

Happy 11th!

Today my "baby" turned 11, officially. (We celebrated on Saturday, with her grandparents.) School starts on Monday, and then my party will begin.

Got a call yesterday from her speech therapist: she's leaving the clinic. Since Diana started therapy, the clinic has had a revolving door of speech therapists. I think this one makes 4 or 5. I'm a little disgusted, frankly; either the clinic needs to pay better, or they need to hire therapists with more experience (who earn more), so that this is not an issue. They don't have a therapist to take Becky's place (again, as usual), so D will be without a speech therapist other than what she gets at school for god-knows-how-long. She will backslide when she does get a new therapist, because each new person has their own way of doing things, and it takes her a while to get to know them and work with them. Plus there's her own anguish of getting to know and like a therapist, only to have them leave (again). I'm not convinced it's worth the aggravation. Maybe I can do at home what they do, without the gas expenditure and revolving door issues.

Monday, August 18, 2008

Autism Awareness License Plates

Don't know how I missed it, but on January 1st of this year, a public act went into effect that will make available autism awareness license plates in Illinois. The DMV's website has no such plate in August, a full 8 months later. I emailed the DMV to ask when they would be offered.

After researching the web, I found these states that offer an autism awareness plate:
Kentucky (coming soon)
Ohio

Frankly, I'm astonished. The rate of autism has been suggested to be as high as 1 in 150 kids, but even if that number is a little too high, that's still a staggering number of people affected with autism in their lives... you can find specialty plates for everything from ballooning to MS to preserving specific bodies of water. Only seven states currently offer autism awareness plates?! Really?? What an easy way for a state to fund autism programs - a voluntary donation in the form of a specialty plate. If you think there should be plates in your state, contact the DMV (and tell your friends and family to do the same) and suggest it, contact your state legislators and tell them why there should be autism awareness plates. 

Color Me Surprised

First she wanted to frost the cake with the rainbow herself. OK - why not? Then when it came time for presents, she actually seemed interested in the scrapbook I made for her (she may not be as interested in the journaling part that I haven't told her about yet). 

 

She was mostly patient, fairly content to be at Grandma and Grandpa's. (She's till unhappy about being "abandoned" for a week while we went last year.) She's asking to fly to California again, and she wanted to go to the river with Grandpa but we weren't able to do that. It really makes me happy that she's interacting more with my dad - for much of her life, she's been indifferent to or even avoided him (he has some work-related hearing loss, and speaks loudly).

All in all, it was a good weekend. The poop issue seems to be resolved, but we will see how today goes...

Saturday, August 16, 2008

Toileting Issues

Potty training was a real struggle for us. Even when she would pee on the toilet, she wouldn't poop. We had control of #1 at about first grade, but still wore pull-ups to bed for #2. This was an issue until about fourth grade. We still have trouble if she gets constipated, like now. She gets irritable (like anyone else), and has small accidents. 

I overheard a conversation at the store the other day, a woman was telling a man her daughter was potty trained by 2, but that her son wasn't until 4. I wanted to tell her just how lucky she was, but figured she wouldn't really get it...

Wednesday, August 13, 2008

School Supplies

Spent nearly $50 on supplies today, from an unclear list - do I buy for all those teachers, just her homeroom? She's not integrated fully, does she need all this crap? Sure wish someone could answer my question, but no one answers the phone at the school, and the teacher isn't answering her email yet. Needless to say, I'm keeping the receipt.

Ah, the good old days... you had a 3-ring binder, some folders, some notebooks, pencils, pens, and a $10 calculator... My husband actually did a spreadsheet for the supplies needed for the various classes I'm not even sure my daughter will be in, and she may be in "team A" not "team B" (Wha..?!) as indicated, and therefore have different teachers requiring different things. What a freakin' mess - they ought to be ashamed, how are people supposed to know what to buy? Madness...

I also finished her scrapbook from the California trip - all she has to do now is look at the pictures I've provided, and journal a bit, and I'll add her words to it. Busy day, and my back is killing me.

Monday, August 11, 2008

Argh!

We waited for *2 hours* to see the doc for Diana's 6th grade physical, with an appointment. And then find out we can't get her immunizations because she's not yet 11 and the meningitis vaccine cut-off age is 11. So we have to go BACK for the bloody shots, and listen to the school complain because her paperwork for the office is incomplete.

Yes, we get our daughter vaccinated. No, I do not believe that vaccines cause autism. Yes, I am glad thimerosal is gone from them, but I have read no clear evidence that IT causes autism.

Sunday, August 10, 2008

Travel Journal/Scrapbook

Diana's teacher and speech therapist put together a very simple travel journal for her to write what she did while on vacation. This was for when we took her out of school, she wasn't leaving school work completely behind. We had to postpone the trip, so she never did the journal, even though I did take it with us when we went in July.

I got the idea to give her for her birthday a scrapbook of her trip, partially finished, that she can add to with her own journal entries. I'll need to find some suggestions online for open-ended sentences like her 2-3 grade teacher used in class, that Diana came up with such unique responses. I don't have pictures of every last thing we did, so will need to rely on her journal for some things.

I have no idea how she will respond to this. Maybe it will be a big waste of my time - gods know other things have been - but she's really surprising me lately with all her coloring and creativity, so maybe this won't be a waste after all. I have to try. Once it's all done, I'll add some pictures here.

Saturday, August 9, 2008

Luckier Than We Knew

I bumped into a mom I know who has an autistic (Asperger's) son near Diana's age. Sadly, he doesn't have the supportive network of teachers and professionals behind him like she does. The family is looking at litigation for the last school year, where (in the opinion of the psychologist who visited on the boy's behalf) he was deliberately placed with a teacher who knows nothing about autism, in the hopes of convincing the family to move the boy out of the school and into an autism school (out of their hair/pocketbook).

This child ended up having panic attacks and nightmares through her ignorance, and if the doc is right about his being placed in there to force them to move him out of the school district, that is not only criminal but immoral. Assuming all this is true, how could they play games with a child's education and LIFE this way?! It will take at least one school year to undo the damage this teacher did. The mom had to double his dosage of antidepressants, just so he could squeak through the year. A child who used to get As and Bs, talkative and involved, became silent, scared and unable to concentrate. 

Unfortunately, I've heard all too many horror stories like this to dismiss it as hyperbole on the part of the mother. That "teacher" ought to be horse-whipped for what she did to that poor kid. Thank all that's holy that the child's aide DID know what she was doing, and was able to help him limp through the year, and she's moving on with the boy into middle school - away from the teacher from hell. Shame on the principal and the superintendent for not acting when the mom said something was wrong. Shame on them for covering for an inadequate teacher, to cover their own asses.   

We are so lucky - Diana's team has been nothing but supportive from day one. I've never needed to ask for anything, what I want for her is provided before I have to ask. I sincerely hope the trend continues as we move into middle school...

Thursday, August 7, 2008

Dentist Visit NOT an Ordeal

Diana went through with her appointment like it was (almost) nothing. She had Daddy with her to help - she's better with him with teeth for some reason - and Dr. Steve had hardly any fuss to deal with at all. She did not care for the grape fluoride treatment, and as soon as that hit her mouth she was done. No cavities, and everything looks great, he said. *whew!*

We will have to be better about getting her to cooperate with brushing. Because she had no cavities this time is no guarantee that the trend will continue. Thank all-that's-holy she only drinks water! 

Right now, she and M. are enjoying their Thursday "date" as they do every week. A trip to the mall, and lately, the comic book store. *shrug* Neither of us know what that's about, but apparently she thinks the manager is a super hero. Laurie finds that funny. How could you not? Outed by a 10-year-old autistic kid! Super heroes: Protect your secret identities!

Wednesday, August 6, 2008

Yawning Dogs

I was listening to NPR this morning, to the BBC Newshour program. Seems some guy did a (brief) study about dogs yawning when people do. He was inspired by his own "clever" labrador, and another study about yawning and autism, suggesting that contagious yawning requires empathy (which apparently our canine companions have plenty of), and because autistic kids tend to lack empathy, they are immune to the contagious qualities of yawning. 


(I'm yawning my face off just typing this... too much empathy, or too little sleep?)

Tuesday, August 5, 2008

Middle School Bound

Today I registered my "baby" for 6th grade. Changing classes, lockers, gym class with showers... hell on earth for teenaged girls, usually. Diana, perhaps not so much. She won't have the same peer-pressured urges, won't feel the same need for me to buy her $200 sneakers, and hopefully will be oblivious to the meanness inherent in junior high kids. 

I have a great deal of confusion about the supply list I was given. I'll break the bank if we actually have to buy ALL that stuff listed for each teacher. I emailed her teacher, begging for clarification.

We still have to get a physical and a dental visit in, hopefully before school starts, but I'm not going to sweat it too much. I was told we have until October. An eye exam is also required, but I don't think she's testable. I'll have to talk to her doc about that...

Monday, August 4, 2008

Never happened

Before we could even make it to the "everyone is dressed and ready" stage, things got ugly. Diana has been whining/crying whenever her father and I try to have a conversation. I don't know if it's a jealousy thing or what, but it's certainly driving a wedge between us, when we can't even talk if she's in the house. Her getting "cheese tacos" and going to the fair after hinged on her being good. Interrupting our conversation was not good behavior, so she got nothing.

I don't know what to do about this. It doesn't seem to matter what time it is, who initiates the conversations, or where. If we try to talk - about ANYthing - she starts out whining, which will escalate to crying and eventually angry wails. She can't/won't tell us what the problem is, but is perfectly content so long as we stay silent in opposite corners of the house. She will rarely even let us watch a movie together, especially once she has gone to bed herself, telling us "Daddy has to go to bed," or "Daddy's office" (meaning she wants him to go to his office).

Sunday, it was like the day before had never even happened. "Mercurial" does not begin to describe her moods, and not all of that is attributable to her percolating hormones; she's always been moody. But so are her parents, so I suppose it's not fair to be annoyed by that...

Saturday, August 2, 2008

Going to the County Fair

Diana has been begging to go to the fair for months. She's never been to one, and I'm not entirely certain what prompted the desire to go this year, but all she's done since the weather turned warm has been to ask to go. So today we're heading for the Kankakee County Fair, figuring 1) it's the last weekend for that fair, and it may not be as crowded, 2) it's not going to be as crowded as some of the other area county fairs because it's more rural, 3) it's not supposed to be as hot today. If I'm wrong about #1, I hope #2 cancels that out. 

I hope this new experience goes as well as the flying one. Maybe we'll even go on some rides... My fear is that she'll get sensory-overloaded and want to leave immediately. We've been down that road before. But she asked (demanded?), so we'll try it. I'll have photos later, and a full report.

To be continued...

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.