Secrecy helps nothing.

I’m deeply, deeply frustrated right now. And disappointed.

My spouse, who is a lovely guy, generally very understanding and open and wonderful…doesn’t want people to know our daughter has been diagnosed with SPD.

Our story is published in Harley’s new book, which makes me really happy–but it’s under a pseudonym. And it’s a success story, about her growth and learning and gaining the skills she needs. And he doesn’t want me to tell people about it. He doesn’t want people to know our daughter has a developmental disorder. It’s not that he doesn’t accept her, or that he hasn’t been an incredible part of how she’s learned coping mechanisms and become so much more confident and adaptable…but he doesn’t want me to talk about it.

This is why I haven’t been active on the SPD Blogger Network.  This is why I haven’t posted much lately, and why very few people know my actual offline identity or my alternate blog.  This is why I haven’t been part of publicizing and networking and raising awareness.

But this is wrong. And I don’t know what to do. I’m so proud of my daughter–why should I be anything else? Why should the fact that she processes sensory input differently from most children be something we hide or pretend doesn’t exist?

Has anyone else run into this kind of resistance before? How did you handle it?

 

AMAZING post–is it behavior, or is it sensory?

Hartley has this wonderful post up, about detecting whether a given behavior is behavioral or sensory.

I’ve never seen the inner game of parenting a sensory kid laid out quite so perfectly. This should go into the next edition of the “Parenting a Child with SPD Handbook.”

(Er…no, actually, I didn’t get my copy either. Isn’t someone handing them out? Somewhere?)

 

Happy Mother’s Day

I haven’t posted here in a long time.

Kindergarten is nearly done; in another month it’ll be summer break again, and my daughter will be headed for first grade.

It has been a good year for her, all in all–her kindergarten environment has been exactly what she needed, and she has been amazing about coping with her SPD symptoms. In fact, there have been moments through the year when I wonder if the SPD was even real, or if it was some mis-diagnosis based on behavior difficulties in a school that just wasn’t right for her.

But it’s real. Little things–or bigger things–happen just often enough to remind me that it’s real.

I worry, and I get frustrated, because it seems like most of the Stuff Out There is for children with big obvious issues, large things that directly get in the way of life and functioning. Not that I wish my kid has bigger more obvious issues, but just that I don’t find much information out there to help her. She’s quiet, she’s very internalized, and she so desperately wants to please others that I think her well-handled SPD has given birth to a whole level of generalized anxiety disorder that makes her life so much more difficult than it seems.

And now there are tics. Not huge, but very consistent, whenever she talks, little tongue clicks (always two at a time) that pop into her speech, peppering it two or three times a minute.

I just don’t know where to go with things now, that’s all. I know she still has a hard time, but I don’t know whom to go to…

 

This is awful.

The Oprah Issue: Her Mistake, And Ours

Ugh. Too wigged to even comment on this right now.

 

SPD checklist

I only just discovered the SPD Parent Zone–very good stuff! And they are having an SPD awareness fair this weekend in Round Lake, which unfortunately we can’t go to since I have this ridiculous job thing…but I’m so glad to know about them!

They also link to probably one of the best SPD symptom checklists I’ve ever seen online…this is a good one.

Interesting t00–it makes it easy; my daughter has some issues with everything, and I bet most people would score a few of these whether they have SPD or not, but she is most emphatically hypersensitive with her hearing and has vestibular/propriaceptive issues. Some tactile sensory-seeking, but it’s not overkill. Those are the biggies. What it means, unfortunately (well, not so much now that we’re paying attention), is that instead of being in-your-face difficult or loud or disruptive, she tends to withdraw and sit still, which wouldn’t normally cause people to notice or pay attention to her, and it’s probably why she was almost 5 before we had any clue that anything was going on.

What’s also interesting is how high I scored in a lot of those categories, especially the propriaceptive stuff…hmm…

 

GREAT post…

Spectrummy Mommy linked to this great article by Tony Attwood (or about a talk by Tony Attwood…)…

As far as I know, my daughter’s symptoms are pretty pure SPD, not Aspberger’s. But pretty much every one of the tips he offers for ways to approach and communicate with Aspberger’s people also applies 100% to Peanut. This is great.

I also was happy to discover the term “neurotypical”–probably something I have come across before, but I like it. I don’t know, something about “typical” as distinct from “normal,” is that it?

 

And then I start poking…

…literally about 5 minutes after my own “WTF vaccines” post, and find everyone’s already talking about it.

This has always been my way, to socially be just enough steps behind everyone else that I feel sort of like an idiot.

So: at Life With Asbergers, there’s this post. (Read the comments too!)

Then Spectrummy Mummy did a really intelligent post about “triggers”--the whole toxic load and “what set it off” question.  (My new favorite blog, by the way.)

And here, at Adventures in Autism…

And Generation Rescue…

This article and link collection about SPD and vaccine links…

There’s probably more.

I am such a social loser. Even in social networking I can’t keep up with the other kids.

 

Vaccines and Autism?

Okay, first there was a link between autism and vaccines.

Then there wasn’t.

Our state mandates the varicella vaccine for all children…this freaks me out, largely just because I am very much of the “reduce toxic load” school of body health, wherein the goal is to avoid putting any more alien/synthetic/potentially toxic/unknown effects substances into our bodies, because one way or other our bodies will then need to figure out what to do with them, and eventually may overload with them. There’s enough toxic load on our bodies just living in today’s world; I hate to add more.

Then there’s the U.S. approach to pretty much everything: until it’s proven to be dangerous, we assume it’s safe.  That’s pretty much a 180 from what I think sounds sort of reasonable.

Common sense tells me that it goes like this: scientist notices potential causal relationship between vaccines and certain neuro-psychological conditions.  Scientist tries to figure out if it’s actually causal, and if so, what the causal connection is. The observation of the link comes aeons before proof of the link. So just because the scientist tries something that looks promising and then realizes later, “oops, guess that wasn’t the link,” is it really valid to just go, “See! No link! It’s perfectly safe!”?

yeah, I dunno.

I’m almost 42; the varicella vaccine wasn’t around when I was a kid.  Which means we still have absolutely no data on how it may or may not affect children in the long run.

I don’t object to the vaccine’s existence. (Well, actually I do, in that it was created using aborted fetal tissue, but that’s a rant for another blog…but yes, all varicella vaccine comes from aborted fetal tissue cultures.  For which religious objection I will probably get exempt. And it also sort of tees me off that religious objection wins over personal parenting concern objection.) What I object to is, as a parent, being required by law to inject it into my child. My child who is diagnosed with an admittedly mild neuropsychological disorder.

Grr.

 

Introversion Doesn’t Suck

Okay, I love this:

Introverts Unite! (Quietly.)

It has nothing to do with SPD, of course, but it’s another sign that maybe as a society and culture we’re beginning to wake up to the deeply desired (by me, anyway) reality that just because someone doesn’t fit seamlessly with some socially determined “norm,” one doesn’t necessarily have a “disability.”

Norms are norms.  As in, it’s a sort of central ground where maybe the majority of people might tend to gravitate, some in the center, some to the fringes.  And plenty of other folks would gravitate elsewhere, by definition not the same place everyone else gravitates. And maybe if there weren’t all this pressure to hang out in “norm” -land, there might be fewer people there, and the population might spread out even more.

I don’t have a problem with “normal,” as in “where most people gravitate. Where I have a problem is with “normal=good,” ergo “anything not within the range of ‘normal’=bad/disabled/faulty.”

So I guess maybe this is sort of about SPD.  A little.

If our kids’ educational system were geared towards them as the “norm,” if everything we read about “Children with SPD” were rephrased as “Most Children,” we’d be the “normal” ones, right?

 

Unnecessary Noise

“Unnecessary noise” is a code phrase in our house.  For both kids, really–when one of them is making a lot of random non-verbal (really annoying to their aural-sensitive mom) noises, we just say, “Unnecessary noise” and usually it stops.  But then, usually that’s because our non-SPD son is the one making the noise.

Tonight it was our daughter. Endless, loud, impulsive,screechy and ugly,  frustrating as hell.  I know she can’t help it, I know cognitively that it’s something that happens in her brain that helps her offload her overstimulation, and on Friday afternoon of the first full week of kindergarten, she’s gonna have a LOT to offload.  I know the temperature change probably has a lot to do with it too.

I’m afraid I crabbed at her anyway.  Sigh.  I’m still working on this.