When the common cold causes common problems

Meghan has a common cold, therefore she is experiencing SIB (self injurious behavior) and assaultive behavior – not uncommon for Meghan and not uncommon for a lot of kids with autism. As some may know from your own autistic children, SIBs are hand biting, hair pulling, and some kids are even prone to head banging. Meghan has never done the latter, but hand biting is very common for her; so common that she sports a dry skin rash on her hand – a consequential blemish and a sign of a repetitive SIB problem.

As her mother it is never easy to hear that she has exhibited these behaviors, and, unfortunately, it seems just about every other week I’m told by her school contact teacher that she has exhibited SIBs – a solemn but true fact of life with Meghan.

It’s common sense to write down what triggered the behaviors in the first place, but sometimes I’m told it’s a mystery. Yeah, right? … uh, not really. As her mom -- and the only person who knows her so well -- I know that her hand biting is obviously due to a sign of frustration (well that’s evident to all), but with a few other imperceptible facts I can usually pinpoint what caused the outburst in the first place, such as: she is not getting what she wants (the stubborn girl); she is not completely understood (the frustrated girl); she wants her dinner and NOW (the very hungry girl); or she is not feeling well: fighting a cold or other (the poor sick girl).

What do these facts really do for me other than help me feel less helpless? Yeah, that’s what it comes down to. She can’t get away with these behaviors no matter what prompted them, but I feel as though I owe it to her to at least understand “why” she exhibits SIB and destructive behavior, and yesterday was no different. I had to hold my breath because I received two calls from her school (did you get that — two): one was her scheduled call from her teacher to tell me that she had some SIB, and the other was from the nurse. Yikes, the nurse call is never a good sign! I was told that she bit a teacher and drew blood. Ouch. Ouch to the fact that biting someone else hasn’t happened in over six months, and the first incident at her new school.

And now that you know that I feel helpless -- as one would in this situation -- what does a helpless parent do with this kind of information? Apologize? Certainly not. Actually, one of the very first and very wise comments made years ago by one of her teachers was: “You should never feel as though you have to apologize for your autistic child.” How true is that? And she was right, so I don’t -- and nor should you. Instead, I ask what lead to the problem to get to the “why”; the inexcusable, but explainable “why.”

As for yesterday I already knew that Meghan wasn’t feeling well -- and to me -- that only means that she’s nothing more than a ticking time bomb and I must wait patiently for these inevitable calls -- and without apology.

Don’t get me wrong; these are also the days that I feel bad for her teachers: the underpaid, sacrificial heroes that never let-up or run and hide (um, like I would – like anyone would when an enraged person is ready to strike), but, instead, they are unwavering in their approach and dedication to working with Meghan and not letting her autism get the better of her. Now that is a hero to Meghan and to the people who love her.

And I feel bad for me, too (yeah, I thought I’d throw that in), ‘cause she’s coming home today -- noontime to be exact. So if you’re the praying kind, then "pray." Pray for the weak, the vulnerable, the “prey” who is up against a nonverbal autistic girl and a very bad cold.

And her menstrual cycle.

School Vacation Week and Anticipating a Problem

Do any of you have trouble motivating your child to do things other than laying around the house in their pjs, watching too much TV and eating waaaaaaaay too much for their own good. If this is your kid (too) please tell me some of your strategies in getting them to get showered, brush their teeth and get dressed… and leave the bloody hell house…

We already use a social story but it’s the dragging and pulling and “working her” for hours that is the problem. The star reward system doesn’t work in our house…it only works at school where it’s extremely structured.

Then if we do eventually get Meghan out and drive to our destination, she won’t get out of the car—she’ll stay put if she doesn’t want to go in. She’s what you call stubborn, determined and sometimes even ((scary as hell.))

For instance, next week we have two events that we have to attend. One is my birthday lunch that I am inviting my family to enjoy with me at one of my favorite restaurants. The very last time we were there, Meghan scared the waitress, I won’t tell you what she did because it was kinda gross and very hard to write… but all of the food that the waitress was holding on her tray went crashing to the floor. Then she threw her coke in my father’s lap for no reason and then she tries to dirty her hands—anyway she can with food—so that I have to take her to the ladies room (for the 5th time) and that’s even scarier because she likes to clog up the toilets and make a flood—really, I will be in the same stall with her and be fighting her off from the toilet paper—people must think we’re nuts… At some point I just motion the bartender for a martini... and just start drinking the hard stuff.

And Christmas day we go to my parents’ house for dinner. If Meghan doesn’t want to stay there or is all done with the visit and we are not, then this clever girl starts breaking all things that are glass, porcelain, even china throughout the house. Last year, she starting plucking the glass ornaments from my parents’ Christmas tree and smashing them on the floor—how’s that for an attention getter? She’ll even go into the bathroom and unscrew the light bulbs and smash…I certainly don’t want to have to leave after her behavioral performances, to show Meghan that this tactic of hers will not work, but I can’t have her breaking things.

Do we sound dysfunctional? And I really have to say that moments like these really do make me appreciate my son, because he is so easy in comparison and I am really lucky and glad to have him.

I know this is a tough one, but any ideas to help make this week’s school vacation not so hard, loooooog and martini-drinking worthy?

Different kids, Same disorder

I just love how Meghan listens to me. Really. It’s really very nice to know that I have complete control over my baby girl—that’s a 13-year-old baby girl, by the way. Yes, I’m being terribly sarcastic. Just drip, drip, dripping with sarcasm. But you have to understand that within the first 10 minutes of coming home for the weekend, she ate just about an entire half gallon of mint chocolate chip ice cream when I strictly told her that she could only have ONE bowl. Then she continued to eat these "multiple" bowls in her bedroom in front of the television watching cartoons, cartoons that she cannot so easily watch at school (or eat multiple bowl of ice cream for that matter). But, I--of course--told her that she had to at least stay in the kitchen if she wanted to have ice cream, but, sadly, my demands simply fell on deaf ears. It’s like I’m talking to a wall half the time.

And all this took place after she walked through the front door this afternoon after being at school for two weeks. She ran into the house and walked right by me… just fllleeewww right by me. No hi, no hug, no wave, but she did turn around to acknowledge me with an--oh, so nice-- big smile, oh, sweeet, even though it was only to give me her coat to hang up for her.

Sigh.

But I really was a bit sick today, so I did not have the energy to blockade the refrigerator, or the kitchen, or the bathroom supplies, or my bedroom and the ripped comforter—sigh, sigh! But then I was thinking while I was relaxing on the couch trying to find the extra strength around a miserable cold, that Meghan should really be listening to me and doing what I say. Ha-ha, did you just hear what I said?? Perhaps I’m just a little feverish, too, but I was really thinking that that is how it works, NO? Not to compare my kids, but my son always listens to me. I asked him to get the mail for me this afternoon, before it got too dark, and he jumped up and ran for the door faster than my cat runs to the sounds of the can opener, even though the neighbor's dog barks at him when he reaches the end of the driveway—and he’s afraid of dogs …Oh, such a nice boy.

But my girl, well she’s different. And I do love that about her. I love how she smiles while simply ignoring me. I love how she’s this fierce fighter in the dark of autism. I love how a psychologist once likened her to the proverbial bully on a school bus who steals homework from little scared kids and laughs hysterically afterwards … I love how her behavior of trying to push her luck--and keep pushing and keep pushing, is the color of her creative soul.

I realized today that it’s a control thing. Well, actually, I’ve always known this fact. But the only problem is that I like control as much as she does … so, we tend to clash that way. That’s what’s going on ...

Is this what you call a love-hate relationship? I don’t know. But I now hear her rummaging through my drawers looking for my chocolate stash …

Oh, just like her mama!!

When Perceptions Change

It’s funny how society relates to one another. Just walking about in a city—any city—let’s choose the Northeast, I don’t know why? ;) We walk to work, jump the subway, hail a cab, whatever it takes to get us from A to B and with acceptance and some acknowledgement that we are not alone in the world and that we are fighting against the same crowd of people just like you and me, everyday…and without a mention of a “Hello” or eye contact. I mean, God forbid we linger too long staring at someone—it could lead to some scary consequences. And if we did start making conversation with a complete stranger—then we’re just “weirdos” and think oooh get away from him/her. We simply tolerate our fellow man while we coexist, No? I guess that’s just the cynics approach to society, not that I'm a cynic, but if I were, that would be my answer.

Funny how our autistic kids are knocked for possessing some of these “antisocial” functions that we come to accept as normal in daily life. And are condemned if we don’t.

One day, many years ago, I was walking through the streets of Boston as a young and naïve 20 year old. I was new to the hustle and bustle and harsher mentality of the working city (I grew up in its suburbs that was as protective of their young as the grizzly bear) and was new to its less than attractive inner social workings. I had just started a new job to pay for college and I just so happened to smile at a homeless man standing on the sidewalk holding out a cup for spare change and he said something very horrible to me (I won’t repeat it…unless, of course, you want me to? Okay, it’s more fun to hear the juicy stuff: he said “Don’t smile at me you stupid lesbian bitch”)—to me, a young, nice, sweet girl whose only crime was acknowledging him as a person instead of passing him by like everyone else did. I was walking to the coffee shop where I would grab a coffee, muffin and spare change for the homeless man.

Well I didn’t offer him my change instead I told him "FU" (and it was my first experience, ever, saying that to someone--and it was upsetting--but I felt the need to defend myself).

Funny how a nice, innocent, naive girl can become a totally different person in one fell swoop, and, thus, was my “christening” into the adult “real” world.

This is not much different than the story of my daughter who is now living at a residential school. It was not like we were biding our time with her and just getting through the days and the years. She wasn’t always what we would call “residential material.” Sure, we had our struggles—me, especially—being that I was home with her and her primary caregiver. But we would and could ride out the problems like every other parent does—autism just presents more challenges and frustrations than those of a typical child. In fact, Meghan was the oldest student in her class with her severity, and appeared to be a student who wouldn’t need to attend a residential school. So things were working—not golden—but functioning, and then one day my perception changed—as it did when I was 20 and welcomed into the real world.

Maybe it was because she’s so smart and thought she could outsmart her mom. Maybe because she knew that she was bigger than me and could pick a fight and win. Maybe it was teenage hormones—certainly that played a big part. Perhaps it was all of these things combined—like the perfect storm. It’s not uncommon for this to happen, and it usually does.

But it felt the same as it did twenty years ago, in Boston, with that homeless man; it’s just so shocking that it knocks you right over. And as a cynic might say: that’s life.