July 2008


by Mary on July 31, 2008

If motherhood imparts traces of omnipotence, even the rhetoric of special needs motherhood raises the bar. Often we are called “superhuman” or “saints.” The “I don’t know how you do it” that special needs mamas hear implies that we must have some other-worldly qualities to help us make it through the day. The notion that we doubt ourselves, keenly feel our limitations, or labor over our decisions simply doesn’t line up with the power necessary to meet the challenge of our daily tasks. — Vicki Forman

This mama says exactly what I would say if I could write like that. I am not a saint. I am not a superhero. Sometimes I’m not even a very good mama. I get tired of sensory issues and say things like “Just eat” or “Just climb the damn stairs.” I get jealous that my friend’s little boy, who is a year younger than the J-man, is speaking AND eating table food. I get scared about what is next, and so I procrastinate instead of learning something new, because then I have a reason for failure, instead of being a failure. I read random books as a form of escapism.

However, I do have superpowers! I can call upon the power of the boob at a moment’s notice, and my super-sensitive-nose has saved us from taking the J-man somewhere moments after he’s pooped. I can sing many songs in many keys, and have learned to vary the pace so he can sing along. Mostly though, I can love him.

That’s my best superpower.

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Stairway to Not Heaven

by Tim on July 30, 2008

For reasons none of us really understand, J-Man has been totally freaking out about stairs of late. He used to go up and down with little help and no worries. He’d hold on to the rail with both hands or with one hand on the rail and the other on us, but he’d do it without any real issues. We have fairly steep steps to the upstairs of our house, and he climbed them without much problem beyond being a little wobbly about it.

Then out of the blue about a week ago, he started melting down whenever we wanted him to go up or down stairs. The two steps to our garage remained doable even if not a calm experience, but anything from the four or five stairs at preschool to the dozen steps to our upstairs might as well have been Everest or jumping out of an airplane. We still can’t figure out why.

At first we wondered if it was just a cranky, almost three-year-old, stubbornness thing, but his behavior is more of terror than just being a toddler. We constantly have to read the behavioral tea leaves because he’s not really verbal. I think we’re right in saying that something is way off inside him.

We talked at length to his occupational therapist about whether something sensorially was short circuiting in him. He has been very sensory-seeking lately, which is usually a sign something is up. He’s been burrowing under pillows, us, or anything else that he can wedge himself in. He’s been rubbing his head on the carpet and doing his downward-facing dog yoga thing he came up with on his own. (He’s insanely flexible.) He’s also way more into his brushing (best picture I could find) than he’s ever been.

We think he also could be having sinus problems that are throwing off his sense of balance (vestibular), which has always been a struggle for him. I don’t know.

This has been a really depressing setback for us. It’s the age-old struggle of when do you ‘give in’ and when do you stick it out regardless of how long it takes. There will be setbacks, but there’s also a sense that ‘lost’ skills take forever to reclaim. With an autistic toddler, ‘giving in’ is a very complex concept. In the midst of a massive meltdown, persistence isn’t necessarily a virtue. Taking a hard line and getting results assumes a level of understanding in your child that isn’t always there in the middle of one of these meltdowns, or in some cases isn’t there in general.

Last night we tried the ‘you’re going to do go down these steps regardless, but we’ll try to make it less stressful’ method. We had once before managed to entice him to take a few steps by using a couple of his favorite wooden blocks as a carrot. That didn’t work last night, but I read him his favorite book while he was on the steps and he slowly worked his way toward me. It took like 10 minutes to cover 12 steps, but it’s better than it has been. I’m not above trying to use carrots and distractions if it means he still accomplishes the goal. A win is a win.

We don’t always know why they do what they do, so you just keep trying the best you can. It’s like playing 20 Questions (or 100 Questions) many days, but you just keep at it. I tried shouting “I think I can!” at him on the steps. I guess that’s worth saying to myself as well.

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StupidFilter vs. Michael Savage

by Tim on July 28, 2008

I came across what may be the best web tool to come out in a long time.

A handful of Internet saints invented StupidFilter, open-source filter software that you’ll be able to use in blogs, community sites, or wherever to filter out stupidity in things like comments. I’m serious.

So as a test, I went to their demo and plugged in Michael Savage’s profane statement, “It’s a brat who hasn’t been told to cut the act out. That’s what autism is.”

StupidFilter’s analysis?

“Text is likely to be stupid.”

Well, I think that settles it.

Now go read my other post and contact his sponsors. Thanks!

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Sometimes the best way to deal with a bully is to ignore them. This is not one of those times. Clearly the need for autism awareness is as important as ever.

While I have a tendency toward hyperbole, I doubt I’m overstating things when I express my opinion that the properly-named, rant-show host Michael Savage is an idiot of epic proportions. (If you need to catch up on how Michael Savage has added autism to his long list of prejudices, you can go to here, here, and here.)

It seems to be his goal to constantly up the ante in nutjob-dom, I guess when people’s attention to his on-air tantrums wanes – that or whenever Ann Coulter gets too popular and his book sales go down. Perhaps he’s trying to establish a new international standard for a unit of measurement for base prickery. I don’t know, nor do I care.

I see no need to elaborate on why this guy is a complete dillweed. If that’s not abundantly clear to someone at this point, that person is too far gone for me to say anything to help that.

What I do want to do here is invite you to contact his sponsors and share your opinions about this. If you are a customer of any of them, be sure to note this in your e-mail or letter. Better yet, send them a picture of your child if you’re comfortable with that. Let them see the faces of autism and how wonderful they are.

The Autistic Self Advocacy Network (ASAN) has a list up of his sponsors. Also, if you scroll down a ways in this blog post, you’ll see another list someone compiled based on what aired during a particular episode.

These lists differ a lot, so keep an eye on that. Because campaigns like this tend to be fluid, try to verify the sponsorship status of the company you are contacting before you hit Send. ASAN may be one of your best bets for keeping up with this.

I’ve worked enough in marketing issues to know that sometimes companies’ ads air during a show because they bought a bulk lot of ad space with a media outlet, which could cover a lot of networks and a range of possible time slots, and they aren’t always aware that it aired during a particular show. Not to mention, marketing departments within larger companies may be the ones making the buys for particular slots and markets and the higher-ups don’t always know it.

Consider this a teachable moment for them. Saying that 1) you’ve become aware that they’re advertising on Savage’s show, 2) as a customer, you are very concerned, and 3) you want to give them the opportunity to renounce this and pull their advertising, gives them the benefit of the doubt, assuming they still merit it. These tend to work better than going straight to flaming, at least in my experience. If they don’t pull out and you pull your business from them, give them concrete evidence of it (like proof of how much you used to spend there).

Also, some sponsors have pulled out already, so be sure to thank them. It’s good to switch to thank you notes as soon as they do the right thing.

Media Matters also has a way to contact stations that carry his show. The network carrying his show – Talk Radio Network – has been given ample opportunity to do the right thing, and they have not. They think by offering token slots for PSAs they can sweep this whole thing under the rug. He did nothing to ‘clarify’ his comments except equivocate, go through the motions, and then go back to being the same jerk about it. Tell them what you think about that (info@talkradionetwork.com).

To Michael Savage, I have a few comments:

1. I do congratulate you on one thing. You’ve managed to unify every facet of all the communities affected by and doing work related to autism, which is nigh on impossible these days.

2. Just because your father called you a fool and a variety of other names, don’t project your issues on to the rest of us. If you have parent issues, get help or just keep them to yourself. Certainly don’t blame us for it. You talk so much about personal responsibility; go practice what you screech.

3. Go sit in timeout, like for forever.

4. If you want to call my autistic son a ‘brat’, I dare you to come to my house and say it to my face. I’ll leave the light on for you.

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Code Words

by Mary on July 24, 2008

I am sitting on a conference bridge now, trying to figure out what one of the presenters is saying. He speaks so incredibly fast that I don’t understand him a LOT. I know this is my problem, because he has a really strong accent, but he obviously speaks English a heck of a lot better than I speak, well, any other language besides English. I could swear he just said something about “managery Russians” and I don’t know where that could come into our topic.

Tim says I do this all the time, even to him. I will miss-hear something, and look at him and say, “Did you just say ‘managery Russians’? Because I don’t know what that means…”

Then he laughs at me.

This happens when he writes notes to me as well. Infamous story in our early marriage: Tim added something to the shopping list, and like most of his handwriting, it was a scribble. We had been spending a LOT of time working on our old house, and I just figured he wanted to use the “cheap clothes pins” to hold up something, or keep it in place while it dried, or whatever. So, I shrugged and bought a bag of cheap clothes pins.

I get home, and he asks me why I bought a bag of clothes pins.

“They were on the list! See, right here.”

Yeah, that would have been “cheap cloth napkins.”

I’ve never lived it down. Any time I either miss-hear him, or I can’t read what he writes, he says “cheap clothes pins.” If one of us is feeling particularly grumpy that we have to go to the store, the other will covertly add “cheap clothes pins” to the list.

We still have the bag of cheap clothes pins. We’ve used a couple.

I think they’ve saved our marriage. You have to be able to laugh, especially when you deal with county people, and paperwork that you swear you’ve filled out before, or strange family, or whatever. You have to know the code words to get yourself and your partner to laugh.

Cheap clothes pins. Get yourself a bag.

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I’m one of the first people to encourage other parents to chuck the milestones books out the window. The ones that tell you what your child should be doing at 75.34 weeks to me do little except make you increase your antacid budget every month. The obvious exception to this is that if you suspect that your child is very delayed in one or more areas, go figure that out both through reading and with your pediatrician and other professionals. There’s a big difference between being 1.8 weeks behind and 18 months behind.

This is probably a blinding flash of the obvious for parents of kids with delays, but after a few months in Early Intervention and therapies and whatnot, you completely lose touch with what ‘developmentally normal’ is. It really is a time warp. At this point, I would have a hard time telling you how far behind our son is. We’re doing things on J-Man Daylight Time and ignoring how most of the rest of the planet tells time. He’ll do it when he does it, has become our motto (at least on our good days).

With J-Man showing some exceptional skills in some areas in the midst of being very delayed on most everything else, we’ve felt the need to go back and figure out what ‘normal’ is for an almost-three-year-old. At a parenting level, I’m not sure how much I’m concerned about this at this point. Like I said, he’ll get there when he gets there, at least I keep telling myself that. However, for purposes of getting him into preschool and doing his IEP, we need to get some handle on where he is (that Present Levels of Performance thing – with the wonderful acronym PLOP).

It’s hard to find to milestones charts that translate well into autism-ese. The obvious problem is that your autistic toddler could easily be two or more years plus or minus what is developmentally ‘normal’ for a three-year-old on these charts. He or she will likely be scattered all over the chart. You have to transpose quite a bit with them, but after thinking through it a bit, I still could get a rough idea.

At the bottom of this post are some links I found to help us get started. Hopefully they’re useful to you as well. I can’t vouch for their complete accuracy or anything, but they’re consistent enough with each other for what I was looking for.

I did discover that J-Man’s letter identification is probably on par with a level of 4-5 years old (he’ll be 3 in a couple of months if you just got here), just minus the ability to say some of them. If he’s in a relaxed state, he can point to any letter you ask for. Lowercase still confuses him for a good half of the letters, but that’s understandable. He’s getting there with numbers and has consistently identified five colors (again, when he’s in a relaxed state). With colors, I usually give him three to choose from (solid-color, construction paper squares) and ask him to point to ‘red’ or whatever. If he goes 10/10, he’ll get the proverbial gold star and we’ll start trying to identify colors in other contexts.

[Worth nothing that if you say something like “point to the green frog” he just stares at the floor. Combining a color and an object – ‘green frog’ – is too much to sort through as he has to figure out what’s green and what’s a frog at the same time. So, we just do “point to green” at this point.]

The key is the ‘relaxed state’. If he’s calm, he can do this stuff one to two years beyond age level. Otherwise, it’s a lost cause. Hitting that sweet spot is hard, which is as much the battle as anything. This is totally a sensory processing issue, which we’re working on constantly.

OK, enough of my rambling on. Here are the links I stumbled on. These center on speech, language, and literacy milestones. If you know of others, let us know.





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Fun With Family

July 21, 2008

The J-man and I were at my parents’ house this weekend. You may not have heard my sigh of relief when I parked the car in the garage on Sunday evening. I’m sure it only echoed through three or four states. Besides the lack of sleep for both the J-man and me, there were the […]

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Such a thing as too much attention…

July 20, 2008

Here’s what happens when an I-like-my-personal-space-and-my-normal-routine kid is doted upon by a thousand of our kin at a family reunion all weekend. (Note: I didn’t make the four-hour trip, particularly because I don’t think there was anywhere for me to sleep after the family invasion of her hometown. At least that sounded like a good […]

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