Sunday, June 27, 2010

Weaving our Web: message boards

Message boards is our subject this week. I'm not a big fan of most message boards due to the drama factor, but their searchable content is sometimes very helpful.'s parenting board - looks like the most recent posts  here were 2008

Wiccan Together's Parenting board - lots of discussions here - this site had a nice set of monthly features, but they disappeared recently. This was also the home of Project Brighd's Arms, an outreach for Pagan parents of premature and critically ill infants. I had hoped this one would take off a bit, but it's very slow.

 In the Mist - an extensive thread on Pagan Parenting

ivillage Mystical Parenting board's Pagan Parenting threads

Thursday, June 24, 2010

New Therapists, New Diagnoses

We love watching the show House - we're sort of a mystery diagnosis and crime lab junkie household, even though we don't have cable and don't watch a lot of TV. And since we spend so much time with hospitals and doctors, a lot of the things on House are super funny to us.

In one episode, Dr House says something along the lines of, "pick your specialist, pick your disease" - basically, that a doctor will find something in his or her specialty that matches your symptoms, even if what you really have is an illness that belongs to another specialty.

This week, that's sort of how we're feeling at our house. As I tweeted last night, "my kid's superpower: magically pulling medical conditions out of nowhere." Acorn went to his intake appointment for the new speech therapy program, and came home with 3 new diagnosis codes - oral dysphagia, expressive language disorder, and receptive language disorder.

I still have some issues with that last one, but the therapist assures us it's not as bad as it sounds - she's more concerned that he only follows directions for some people and not others, than about him not actually understanding what's said. I suppose I can go along with that, but I was already wondering how much of what we see is his actual personality, how much is his attempts to exert control over situations, how much is him manipulating people, and how much is actual delay...and this just adds to that feeling.

He ate for her, though obviously not at an age appropriate level - she was pleased, though, with what she saw. We'll be going forward with a combined speech & feeding therapy program, because right now the issues are all somewhat tied together. And I'm hopeful that we'll make progress this way - not that he hasn't been making progress, but that a little faster progress is always nice.

After the fun of speech, we left him at home to meet his new child psychologist, and while there's no diagnosis there...there's agreement that his reactions (over reactions) to doctors offices and the like are, as I put it, "understandable, but not OK."  I'm fully of the belief that there's no need for him to be so anxious about doctors that he makes himself sick or shuts down, and that we should do something about it other than wait and hope it gets better.

If nothing else, having someone with a PhD after their name telling doctors and hospitals that certain things are just not going to fly with Acorn will be a help.

Tuesday, June 22, 2010

dinner in a special needs household

Some people comment on how little Acorn eats - or, more accurately, they comment on things like him crushing up tortilla chips instead of eating them, on him putting things in his mouth and pulling them back out a half dozen times before he swallows, and so on.

For all that there are some issues there, we're working on them, and for a kid who we were told might not eat anything solid until after his trach is out, we're thinking he does pretty good most days, though of course, more would be better.

The thing is....this is not the special needs household I'm thinking about tonight.

Tonight we're having a dish that we've named "Stuff in a Pot" - a large stock pot full of veggies (and sometimes fruit, like apples), and sausage (kielbasa, or chorizo, or something else spicy and tasty), cooked for an hour or so, with salt, pepper, and lots of garlic. This is usually a "cleaning out the fridge before things go bad" sort of meal for us - and it makes tasty left overs, and freezes well.

In the house I grew up in, this meal could not have been served. It's not  on the list of 10 or so things my father eats, and it includes veggies he would never allow in the house (leeks, chard, bell peppers, and raw garlic, for starters).

It's clear to most of us that my dad has Asperger's Syndrome - his need for strict schedules, his limited food and clothing choices, his difficulties with making and keeping friends, and his obsessions with certain topics are all classic hallmarks of the diagnosis that probably would never have been made in his childhood, and isn't terribly useful now, other than as a way of framing past experiences

By the time I was 12, it was my job to cook dinner every night. Now that I'm a parent, and a full-time-working-out-of-the-house one at that, I have a better understanding for his desire to come home to dinner waiting.

Then again, now that I'm that same parent, I find his methods for enforcing that desire to be even more unconscionable than they seemed at the time.

I was accused of being a picky eater - and I'll grant that I am, sort of. I don't like pancakes. I don't like peas, mushrooms, sushi, broccoli, or beans. I can't stand canned carrots or frozen spinach, but eat them raw. I don't care for raw apples, but love apple pie and apple sauce. The fact that my father harped on these things (because he loves pancakes and apples) is a joke in our family, but was never a laughing matter for me. It colors my relationship with food to this day experience as a child informs my treatment of my own child's eating challenges. We give him small portions of just about everything we eat. He rarely hears "I won't eat that" come out of my mouth. He rarely hears comments on him not eating something, other than from other people when we're out at restaurants.

We cook...which I did growing up too, but now we cook with mostly fresh fruits, veggies, and meats; we use spices in this house. We enjoy the cooking process, rather than rushing through it as a means to an end.

And in the end, we sit down together with our dinner, and eat together as a family, without any judgements about who eats what or how much.

Friday, June 18, 2010


As a parent of a child who has resulted in us having a very different life than we used to have, I find myself seeing things in ways that I never would have before.  It's hard, though, to remember that others are like we were before - they don't have this perspective, and that allows them a level of privilege that we can no longer afford.

They have the privilege of wondering whether "routine" surgery for a non-life-threatening condition is safe enough, and thinking that they want second and third opinions before putting their preschooler under anesthesia.

Acorn's first surgery was at 26 days, and just less than 2 1/2 pounds, and had it not been done, he likely would not have survived. He's been through 6 procedures under anesthesia in the last 2 years.

They have the privilege of putting off antibiotics for common things like ear infections to see if they heal on their own.

Acorn has had a ruptured ear drum, and is likely going to need tubes. Besides, any infection could become a respiratory disaseter when you're talking about a kid who is still on oxygen.

They have the privilege of going to sleep at night without worrying about whether their child will keep breathing.

@kysilka wrote about this in a guest post over on and did so far better than I can.

They have the privilege of grabbing a diaper (and maybe a bottle) and leaving the house.

At one point it took us a duffle bag and a double stroller to get everything Acorn needed in to dinner or a doctor's appointment, with time constraints on how much oxygen we had available.

They have the privilege of complaining about how horrible overnight hospital stays are.

Acorn spent his first 291 days in the NICU. While hospital stays are inconvenient, there's a vast difference between a week in the hospital and several months.

They have the privilege of dropping kids off with a friend or family member for a night out.

Acorn requires trained care - only one family friend has been willing to learn it all and make themselves available. Other than that, it's nurses, take him along, or don't go.

They have the privilege of sending their children to school on a school bus.

Acorn needs a trained care giver on the bus with him to go to school this summer. The school only allows employees on the bus, and their idea of training is a short explanation of how to suction.

They have the privilege of sending their children to school (preschool, daycare, etc) at all.

Last winter, we went nowhere due to the risk of germs. We're all terrified of sending him this winter, and our pediatrician may yet say no, he needs to be home.

This interesting life we have teaches us a lot about what's important. Acorn is a survivor, though, and we will get through all this, even if I have to leave most of the parenting communities I've been a part of the last few years to avoid some of the really irritating comments.

Tuesday, June 15, 2010

But he needs friends!

You know, having a special needs child means you get some interesting looks from people when you're out.

Interesting is probably too nice a word - Janis, over at Sneak Peek, writes about the rudeness she encounters towards her son.

I'd like to point out another problem this brings, though.

Our school IEP team strongly believes that Acorn needs "friends"  - that interacting with children his own age is important. I'm not completely sold on this idea, since children at this age are more likely to play "near" each other than "with" each other, but they're adamant that it will improve his language skills.

At any rate, they keep asking, "well, don't you have other kids in the family he can play with?"  Our response continues to be, "no, he's an only child, and an only grandchild."

"Well, what about neighbor kids?"

Ok, seriously. We can't go play at the park without people saying really awful things and parents pulling their kids away from us. How, exactly, will we convince anyone to get close enough, long enough, to actually play with him if everyone treats him like a sideshow?

I don't know. At the moment, it feels like another case where the school just doesn't get Acorn's condition and needs.

Sunday, June 13, 2010

Weaving our Web: Newsletters and Magazines

This week: Newsletters!

I used to have a subscription to "Blessed Bee" but it appears that they've stopped production. Here are a few e-zines for you:

Moonbeams - covers a wide range of ages, and usually has some nice coloring and activity pages

Broomstix -usually seems better for slightly older-than-preschool kids, but there's a lot of good info here.

Nature's Child - this one is new, and is produced locally to us. Personally, I find the formatting a little offputting, and this first issue has a lot of content I've seen elsewhere before, but there's potential too.

Do you know of any other Pagan parenting publications?

Wednesday, June 9, 2010

Naming the new feature, and other miscellany

The new feature, which contains various resources for Pagan Parents, is being called "Weaving our Web" - there's a page explaining it on the right, and there will be a link to all the posts there.

Speaking of pages, I think now that there are pages available, I need a different template so I can get them in the right place. The search is on - or, if you know someone who does blog remodelling at a reasonable price, let me know.

We've had 2 weeks of insanity here, with Acorn being dropped from home-based therapy with no transition plan to get him into outpatient. We've also had an IEP meeting, adjourned the meeting without signing it, and are waiting on details.

I've got a couple extra appointments in the works for him as well - one to hopefully find someone who can help with the anxiety issues, and one who can help forge a better working relationship with the school - Acorn is one smart cookie, even if he doesn't talk, and the school doesn't always know how to work with him effectively.

At any rate, we're still afloat, but barely. We really could use a bit of good news, or at least a reduction in drama, or an increase in sleep.

Sunday, June 6, 2010

Resources for Pagan Parents

This is a post full of resources for Pagan parents of toddlers and preschoolers - there are tons of links and websites and books out there, but sometimes they're a bit hard to find. I'm kind of hoping to make this a regular (weekly) feature - and I'll be working on coming up with a better title if I do.
At any rate, here's what I've got for you this week:

Pagan Lesson Plans - while I can't seem to get from their main page to the archives, and the archives haven't been updated lately, there's some good ideas in here for slightly older children that you might adapt for younger kids. There is a category for preschoolers too.

Pagan Preschool - blog of a Pagan parent, talking about what they do with their small children.

A to Z Home's Cool Pagan Homeschooling Page - this site is an extensive resource for all homeschooling parents, including this page of Pagan resources.