Because I Said So

Akimbo

Frieda got sick this week with a cold that morphed into an ear infection and a croup-y cough. Jon missed work and I missed some work and everything was thrown into a tizzy. I ran late for everything. I had to reschedule a couple clients for my tech biz at the last minute and I felt like a schmuck.

How fragile is our schedule that it can be thrown into disarray by a lil' ol' ear infection? I wonder.

Now I sit in my office with a client's computers, a laptop and a desktop on which I'm running anti-virus software. These machines are ill -- and not in the young, hip way, either. Let me give you a word of advice: no matter how much anti-virus software you install, if you're not practicing safe surfing habits you're going to catch something.

Yeah, there's a safe sex analogy in there and yeah, it was intentional. Limewire and other file sharing programs of its ilk are like the gay bathhouses of the computer world. Don't let strangers use your ports. That's what I'm saying.

Big Ben

Meet Ben. We adopted Ben from an animal rescue group over the weekend. Ben is part mastiff, part something else (two different sources say two different things: German shepherd or hound dog). He's about two years old. He's very large (90 - 100 lbs) and incredibly laid-back. Today Frieda clamored over him and he responded by wagging his tail.

I did a fair amount of research on available dogs before I asked this particular rescue organization about Ben. He fit all of my criteria: an adult dog who is already housebroken, has modest exercise needs, is good with kids and other dogs, and isn't a barker. I like bigger dogs, but I didn't set out to adopt a massive dog. It just turned out that way.

Ben is fairly well-behaved but he is quite stubborn. Last night he hopped on the couch to snuggle up next to me. I don't want him on the furniture so I told him, "Off, Ben!" No response.

"OFF!"

Nothing.

So I emphasized it with a shove. "GET DOWN!!" (shove)

He looked up at me and wagged his tail.

"You're cute when you're angry," he seemed to say. "Now rub my belly."

We start obedience class next week.

Halloween 2009

Yesterday a woman I work with at my new part-time job mentioned that her son has autism. "Yeah?" I said, "Mine, too! Fist bump!"

I feel like we parents of autistic kids should have a handshake or signal or some kind of special greeting to express our solidarity. Whenever I meet POAK in real life (vs. in virtual words, i.e. the web) I feel a kinship -- despite our differences in the vaccine question, therapies, or any other controversial issue. In real life we almost always talk about our kids first and our ideology later, and this seems sound. It gives us a chance to know and connect with each other as we really are, and not as we imagine each other to be when we're pounding out some screed on a discussion board.

From the pics you know that we took the kids out for trick-or-treating. We have a close-knit neighborhood but we went to only three houses. Henry struggled with the concept of staying in the doorway and not going into the house. This was especially difficult at the house where he used to go for daycare -- he wanted to bolt inside and run around and he got upset when we said no. Still, he did a good job overall and of course enjoyed the candy, especially the Skittles.

Frieda enjoyed being out and about, although she's still too little for candy or for getting into the whole Halloween thing. Maybe next year...

We still have seven pounds of leftover candy. So c'mon over and get some!

When Friending Goes Bad

Below is a Facebook message I recently received from the wife of an ex-boyfriend. This ex- and I dated for about a year and a half, starting the summer after my senior year of high school. We've kept in touch sporadically over the years (he lives in California) and we'd exchanged  a couple "what-have-you-been-up-to" messages on Facebook when I received this message from his wife.

"How are you?

I have learned so much about you from L. I am surprised that you guys are still in contact. Are you planning to get back together?

Well, let me be very honest with you. He is the worst f**ker I have ever had and you can have him all you want. In fact, he can pack his pills with him for you since he can't do anything without it. Enjoy my dear!

P.S. L. and I are still legally married, but I am leaving him since he sleeps around like a slut

My response:

I haven't seen L. in many years. I am happily married and have no intention of getting back together with L. (I broke up with him in 1985, you know!). The only contact we have had has been an email or two.

I'm sorry that things are so bad between you. Good luck with your new life and I wish you the best.

One of the stranger aspects of this exchange was that simultaneously, with the angry message above, the wife also sent me a friend request. Wha'?

With few exceptions, I have stayed friends with the men I have dated over the years. They were interesting people or I wouldn't have dated them in the first place. I welcome their friendship.

But psycho ex- or current wives and/or girlfriends? Not so welcome.

Tart Juicy Apples

School started this week. I'd been giving Henry little heads-up warnings about it -- "Henry, in two more days you'll start school!" -- but until he saw that yellow bus pull up outside our house Tuesday morning, I don't think he truly got it. He looked rather stunned. Still, he got on the amazingly-on-time bus and headed off. And did great.

He's in first grade this year, so it's the first year of "big school." He has gym class, music, and art. There are only 3.5 other official "special needs" kids in his school (the .5 is a half-time kindergartner). Small caseload for the special needs team, except for the speech therapist who tells me her caseload (which she shares with a half-time therapist) is 56. That is INSANE.

So I'm looking around at other mom-blogs out there and I notice that moms are talking about packing nutritious lunches, and quick things to pull together in the morning, and things to stock up on -- etc. And I think, "Hey, wait a minute -- I signed my kid up for the lunch program! Am I doing it wrong?" Then I think: wait.

Let's say it takes me fifteen minutes to pack the lunch in the morning (it would take less, but I'm adding in shopping and planning to keep things simple). School lunch costs $2. Do I really want to pay myself $8 an hour to stress out over yet another thing to add to our morning routine? And I know that at least once a week, that lunch would be on the counter whilst Henry was out the door.

Despite this very fine rationale I'm still feeling a bit sub-par, mom-wise. Then I get an email from HS, Henry's lead spec ed teacher. "He loves having lunch with the other kids...today he ate green beans." He ate GREEN BEANS? He's never consented to green beans at home.

Ah, the sweet balm of vindication.

PS: The title of this post refers to a common item on the school lunch menu of my junior high. I can only guess that there was a grassroots movement, spearheaded by the PTA, to remove the dry, mealy apples from the school larders and replace them with something befitting the finer palates of their children. Regarding said apples, I cannot honestly attest to their tartness, nor can I attest to their juicyness, since I always got the pizza.

Large Pink Erasers

Item #3 on the first grade supply list. It looks pretty much like the supply lists of my youth, with the exceptions of dry erase markers and disinfectant wipes. Oh, and glue sticks. Science hadn't quite figured out how to make semi-solid glue, at least for consumers. (I'm sure the Elmer's executives had this long before the general public.) We were stuck with those orange-capped bottles that clogged and had to be unstuck with a pin or a toothpick. My sister and I used to coat our fingers in the glue, let it dry, then carefully peel it off -- making little glue hats, embellished with our fingerprints.

We did the same kind of thing with hot wax from the candles we burned, secretly, in our rooms.

And we burned crayons by holding them up against the hot light bulb of my Jack and Jill lamp. They'd get nice and melty, like heated chocolate chips. I think we scribbled with them, but that memory is hazy: the point was the melting.

Once we tried to make a "scented" candle by pouring Avon Apple Blossom perfume onto the open flame. WHOOSH! an arm of fire shot up from the candle, flinging the perfume bottle cap out of my hand. It was astounding -- perfume burns!

We only performed that little experiment a single time. We were either scared enough or wise enough not to attempt it again.

What will Henry and Frieda set fire to? I wonder...Henry has not shown any fascination with fire at all, unless there's food cooking on top of it (and that's the food he's after), but Frieda...that girl has mischief written all over her.

The Autism "Community"

I'm done.

Done, done, DONE with reading autism blogs, Facebook groups, discussion boards, etc. etc. Anything where the point of the dialog (sic) is to prove why "we" love our kids more than "you" do. The whole thing is a lot more complex than this, but generally and roughly:

Group A believes that autism was caused by vaccines, that their children are damaged and that government and big pharma are responsible. They generally follow alternative medicine/biomedical protocols, say they will do "anything" to help their kids (including potentially dangerous interventions) and this means they love their kids, are more devoted to their kids, than Group B.

Group B is the group that doesn't believe in the vaccine theory, but believes autism is caused by a combination of genetics and some kind of environmental trigger (needle-in-a-haystack here). They are often called the "Neurodiversity Movement" (ND). They believe that their kids are not "damaged", and that they shouldn't be spoken about in disrespectful, angry terminology such as Group A uses. They believe autism is a lifelong condition that there is no cure for, hence the "snake-oil" treatments of Group A are nonstarters. They believe they love their kids more because they accept them for who they are without trying to "cure" them, and that they don't waste time being bitter, disappointed, etc. because they are "too busy loving." (That last is an actual quote.)

Here's me: though I do fall into the ND camp regarding the causes/root of autism, I am heartily sick of the holier-than-thou attitude that lately has been springing up on boards and blogs around the Web. Even bloggers that I usually admire, find informative, humane and funny sometimes stumble (in my opinion) and start slamming the parents in Group A and tossing about the ol' "If you really loved your child you'd be more like us" thing. Yeah, Group A does it, too -- but they're not my people so it bothers me less.

And here's each and every social/movement group:
1. They all have an agenda
2. They're filled with well-meaning people
3. They get swept up in political bickering and infighting and uncivil behavior
4. They're prone to using hyperbole OR minimization to further their agenda/viewpoint/side
5. They each have their own magazine

Regarding #4: here's how I see it working.

Group A -- the Vaccine Group -- often focuses on the most difficult aspects of raising children on the spectrum: the toileting issues, the tantrums, the occasional violence, etc. Remember: they believe that Big Pharma caused this, so showcasing the results of that serves their purpose. In short: bring on the negative.

It's a distortion.

Group B -- the NDs -- sometimes downplays the worst aspects of raising children on the spectrum, saying it's not that bad and even if it IS bad, you shouldn't talk about it in public -- if you do feel angry/sad/disappointed you should suck it up or see a therapist (who will tell you these feelings are normal, but I digress).

Sometimes I get the feeling that the parents in this group who have "higher-functioning" children are especially cold toward parents who have "lower-functioning" kids. They don't want to hear about the bad shit. The whole "I've never been upset -- I was too busy loving" thing is a clear example of this. There's something of the Pollyanna in this. It's not just that we shouldn't complain about our kids in public (a sentiment I agree with up to a point) -- it's that there's something wrong with parents who grieve over their child's autism.

And here's where it bothers me personally: 90% of the time, I'm fine with Henry's autism. Hey -- it is what it is. I love him as he is. But 10% of the time, I STILL struggle with it -- because I am scared of the future, and worried that he will never learn to communicate, and that life for him will be really, really hard.

And I still have days where I feel sorry for myself. When I feel weighed down with responsibility, when I wish parenting were easier. (I'm sure I'd have the same feelings if I had two "typical" kids.)

And I have days where I feel a bittersweetness as I watch Frieda learn to walk and talk (she's talking!) -- and I know that someday soon she will speed past Henry, developmentally. And I feel sad, sad, sad.

And I don't feel like Group B would have much sympathy for this -- not from what I've seen lately. Sure, they'll be all "Why can't we all get along?" and "We all love our kids" and they'll hold out an olive branch of sorts to Group A, but when it comes right down to it, the rigors of their moral philosophy are a bit, well, too rigorous for me.

Plus, I think they lie.

I think at least some of them feel sadness and disappointment more often than they admit. And let me make an important distinction: when I say "disappointment", I never mean disappointed in Henry. I mean disappointed FOR him -- that he will never experience some of the things a typical kid does, and that things that are easy for a typical kid will never be easy for him.  An inability to communicate (not just talk -- communicate) is a huge handicap. Yes, it's a handicap! And I say that not because it makes life difficult for me, but because it leads to all kinds of misery for Henry.

Example: this summer he has been having hysterical crying jags. One week, they were near constant. He cried at home. He cried at school. He was inconsolable, and we tried everything. Finally I brought him to the doctor. Three people held him down so we could get a temperature. (You can imagine how distressing this was for him. And he was already crying.) He couldn't say what hurt, if anything; what was bothering him; why he was sad. Nothing. Not a clue. Feeling that kind of despair -- and not be able to make others understand it -- must be a kind of hell. Being helpless in the face of it is.

Parenting a child with autism brings, in my experience, an admixture of emotions: joy, sadness, despair, depression, optimism, bravery, weakness. It's all in there. It's a complicated stew. And lately I've been reading too many bloggers in Group B who don't recognize that, or don't believe that, or would -- in short -- have no sympathy for anyone who doesn't express only pride, joy, and love where their children are concerned.

THAT'S a distortion.

No one who parents any child at all can possibly say, with all honesty, "I'm never upset -- I'm too busy loving."

Are those really mutually exclusive? I can't be sad and loving, scared and loving, anxious and loving, yes even angry and loving?

To some of the Group B'ers, apparently not.

So I'm done with 'em: Group A, whose conclusions re. vaccines and conspiracy theories I can't agree with, and Group B, who lives on some rarefied moral plane I can't aspire to. It's not human up there; it's made for the gods.

And it's far too cold.

Short and sweet

Whenever I take a break from blogging, I feel like I should have an explanation and even ask for forgiveness. "Forgive me. It was been two months since I last blogged..."

Pfft. I'm not going to do that this time. I'm just going to jump back in with a couple recent pictures.

Number one: food item from an Asian grocery. It made me laugh, given the whole GFCF "autism diet" thing, which we will be done with in a few weeks. (We don't follow the diet at home, but Henry's school does. Overall it's not big deal, but has occasionally given me a pain in my sit-upon. Example: having to find GFCF suncreen.)

Number two: Sign in a coffee shop in a small town in Wisconsin, where my ailing uncle lives. It seems it is possible to get a decent cup of coffee in almost any town these days. And I needed it, having been up late listening to my neighbor at the motel holler over the phone at his girlfriend in the wee hours of the night. Note to self: bring earplugs next time.

 

Last Day

Today is Henry's last day of kindergarten. It's been a rough year, with several big changes for Henry that he struggled to adjust to, and I'm not sad to see it draw to an end. (Nor will he, I'm sure!)

As one of Henry's team members reminded us (a woman who's worked with Henry for a few years now), he tends to have a good year and then a bad year -- and we're due for a good. He'll continue at his private school this summer, plus I've signed him up for adaptive swim lessons at our community center. He loves the water, but doesn't swim. Just getting him to put his head under water will be big progress.

I remember taking the summer off a couple years ago -- meaning we didn't do a lot of "therapies", I didn't pressure myself to find teachable moments and I didn't pressure Henry to "improve" -- we just did normal kid stuff: walked down to the beach, played in the yard, went out for ice cream, read books, etc. (He was deep into his letter obsession then. How I miss those days!) And you know what? He had a great summer, and the teachers all commented on his "progress" when we saw them again in the fall.

There's a lesson in this. And I hope to keep that in mind this summer. Henry will have a busy one, but there will be time for him to just be a kid, to take walks, to go swimming, to get ice cream, and to move in whatever direction he chooses to take. And I'll be there with him.

From a Distance

I'm in Atlanta with my sister for a quick, three-day get-away. We used to take vacations together a lot, pre-kids, but it has necessarily become more rare.

But I realize how much I miss it. No one can make me laugh like my sister (and vice-versa, I think). Our traveling style is compatible: we both like a similar mixture of structure and non-structure, we like the same kinds of food, we know and accept each other's foibles. This is not a common thing -- I'm sure you have experienced, or know of others who have experienced, trips with friends or relatives that went horribly, horribly wrong.

The closest we have come to having a vacation breakdown was years ago, when we rented a camper van in Las Vegas and traveled around the southwest, camping here and there, wherever the road took us. One day I was really out of sorts -- I don't know why -- and L. turned to me and said, "Why are you being such a bitch?"

It brought me up short. And I couldn't deny it: I really was being a bitch. That really cleared the air, and we were able to proceed without throttling one another. (More likely, her throttling me. I was truly asking for it.)

At the same time that I'm appreciating the freedom I have here (room service breakfast, some quiet time to myself, looking forward to some shopping and good food later today), I'm missing my family, too. Frieda is turning into a little spitfire -- a very stubborn, willful girl -- qualities that I cherish (yeah, I can say that now). And Henry has been very cuddly and affectionate lately, though being snuggled by him is a bit like having an adolescent gorilla in your lap: he's a heavy-limbed, solid boy.

And we're heading into the summer season. School ends in a week. The weather is warmer. Even as I write this, some burly guys back in Minnesota are tilling the garden in preparation for planting (yeah, it's a little late but so what?).

It's nice to sit here and think about how much I enjoy my day-to-day family life back home, although I admit: it's sometimes easier to enjoy it from a distance.