Wednesday, February 13, 2013

Picture Communication for Pagan Kids

Those of you who have been reading here for any amount of time know that my 4 1/2 year old, Acorn, is diagnosed as non-verbal (he says a handful of words only) due to a complicated medical history. While we all think he will eventually talk, we are working on ways for him to communicate right now, because he has a lot to say, and we'd like him to be successful in kindergarten next year.

One of the ways we're doing this is with an electronic communication device - a device with a synthesized voice and buttons to touch for each word that you want to say (sort of like the device used by physicist Stephen Hawking, but more updated, and more appropriate for a child to use).

His device comes pre-loaded with some basic vocabulary, and it's expected that we'll add words related to things he does every day and things he'd like to talk about. There are several thousand words available to us already using a picture symbol set called PCS (picture communication symbols) developed by a company called Mayer-Johnson, but we can also add our own pictures for things that they don't cover.

As you can probably guess, there are lots of symbols in this set for Christians (I've seen church, Jesus, nativity, and more).  There are menorahs and a symbol for Hanukkah. There are symbols for dozens of holidays. But no Pagan ones of any sort.

While I could print out lots of different pictures from the internet, we'd really like to keep the images we're using on Alex's device similar in style to the existing images to minimize confusion...and to minimize drama with the school, who also gets access to add, change, and delete things on the device. get to the point. I'm looking for 2 things:

1. an artist or two who can mimic the style of the PCS images, such as the ones found at - while I'd love someone who would volunteer, I know that's not very realistic, so I'm willing to negotiate payment for the initial images that we'd like for our own use. If I end up paying someone on my own, I will make the images available for a small fee for others to use. If we can crowd fund or find volunteers, I will make images available for free for others.

2. others who are interested in developing a word & picture list. Our family is nominally Wiccan, so that's where I'm starting on words we'll eventually need, but I'd like to be able to introduce other Pagan faiths & key concepts as well.

Interested? I've started a community on Google to discuss vocabulary and strategies.

Tuesday, February 12, 2013

Goddessey Goodness

After all our excitement last week, it seems I've caught the kids' respiratory bug, so I'm home sick today. I slept all morning, had lunch, and now I'm lazing on the couch, watching bad horror movies & msking my first attempts at needle felting.

I decided that for the kids' altar, I'd make God  and Goddess figures by needle felting them. Learning to improve my crocheting enough to follow a pattern (my last scarf was triangle shaped with all the dropped stitches) seemed like too much work.

So, here's the photo evidence of what I planned and how "Gaia" turned out. I've already decided I'm going to need more colors of roving for decorating these.

Inital sketches for male and female

first Goddess body in core roving

One side, in blues and greens

filling in the other side

finished Goddess

"Gaia" is about 1" thick and about 7" tall, which should work nicely on the shelf I'm planning to use for this altar.

My goals for this project include Gaia, Green Man, Father Sun, and Mother Moon. Beyond that, we'll see....depends on how the altar works out in practice, and how long this takes me.

Friday, February 8, 2013

Triage Parenting

I'm told that normal parents, when faced with more children in the home than adults, sometimes make their parenting choices based on who needs help or attention the most at that moment.

It's like going to the ER (which we've done 4 times in the last 6 weeks) - you walk in the front door, and they take some time to figure out how bad your situation is so they can figure out whether to take you right back to a bed and get busy at keeping you alive, or whether you can wait for a bit while they take care of those more urgent cases.


I should note that having a trach moves you much closer to the head of the line, no matter what's actually wrong - see that last post about it making people nervous. And if you walk into an ER with someone with a trach who is wheezing? Yeah....straight back to a bed, even if it takes them hours to actually get you out of the ER and into the regular hospital.


When you're dealing with medically fragile children, the power balance shifts - sometimes it's not enough to put one adult on one child and hope for the best - sometimes a child's care requires 2 or even 3 people to manage things.

And in those cases, your heart breaks for the choice, but you do what you must do.

So it is at our house this past week. When we just had one child, we could fairly easily trade off time at the hospital with Acorn, while the other parent worked or slept or whatever. But when both of our children were in the hospital? It's not so easy.

Acorn was sick, but not sick enough for the ICU. The regular peds floor is a scary place for us - nurses fully expect parents to be there and to do basically everything; they have only the bare minimum of staff to keep an eye on things. Acorn is not the kind of kid who can be trusted to stay out of trouble, even when he's sick, for more than about 10 minutes without supervision.

Leaf was sick too - not sick enough for the ICU, but her ventilator requires her to be there. The ICU has one nurse for every 2 children, lots of monitors, and in Leaf's case, respiratory therapists checking in pretty regularly as they monitor her, switching her from ventilator to trach collar and back again.

And in the grand scheme of things, for all that Leaf is afraid of strangers these days, leaving her alone in the PICU was the best choice - safe, contained, and well cared for. I needed sleep desperately after the all night wait in the ER. Acorn needed supervision. My husband needed to go in to work today for a meeting. And thought it broke my heart every time we left her there, we knew she was in good hands.

On the plus side, Acorn is now home (though with oxygen and nebulizers). On the minus side, that means that if one of us is working, there's only one of us to manage 2 children who are in 2 different places. Again, painful. But necessary for the moment. We'll all be home together soon.

Thursday, February 7, 2013


We make them nervous.

We come with sick kids - sicker than most on a daily basis, but sometimes just sick like any other kid.

("He isn't on oxygen normally, so he can't go home on oxygen, even if you have it at home, because we don't send kids home on oxygen."

We come with our gear, all beeping and whooshing and flashing lights, this bag and that - literally holding our childrens' lives in our hands.

(" have a lot of equipment here.")

We come with knowledge - we know their words, their secret codes. We can understand the big words they often use to show how smart they are, how much more they know than the patients they're caring for....and they are afraid they're not that smart.

("she's on a ventilator, and I'm guessing mom knows way more about this than we do")

We come with familiarity. We do things every day that most of them do once in a great while. That familiarity gives us confidence, and their confidences on these things is not that great.

("Oh my God, he has a trach! I hope you don't expect us to do anything with that!")

We make them nervous - we are not doctors or nurses, but we know this stuff better than anyone. We can change a trach in our sleep, silence a vent in the dark, set up and run a nebulizer before they'd even find all the parts. And they're never quite sure what their job is at that point.


Those quotes are all real quotes that we've heard over the years. Many have been brought to mind, because Acorn has been in the hospital with RSV and suspected pneumonia for the last 5 days and is finally home; Leaf has been in the hospital for the last 2 days "just in case." We've argued with doctors about whether or not Acorn can go home on oxygen (*his* pediatrician sent us home that way today, which was good because Acorn was bouncing off the walls, with instructions to come see them Monday, hopefully without oxygen). Everyone agrees that we *could* manage Leaf at home, but they want to get past the risk of things getting worse.

Hospitals are supposed to be the place you go when you need skilled medical help. For families like ours, they're scary - you don't know which person you talk to will have enough knowledge, and whether or not they're willing to admit it if they don't know. You have people second guessing every last thing you have spent months working out, from ventilator settings to feeding choices to how to get a child to sleep.

But they can also be good places - where the first words out of the mouth of a nurse or respiratory therapist who's known your child a long time is not "Oh my god!" or "I can't do that" but rather, "He's so big!" or "she's still got that smile!" They know how far you've come, and they start there. Those people make our stays a little brighter.

Saturday, February 2, 2013

This communication stuff is complicated

On top of everyone being sick, again, it's been a week to deal with communication around here.
Yesterday we got approval for Leaf to use a speaking valve, and she does really well with it. She was back on the vent full time 2 weeks ago with an illness, and the amount of babbling she did was striking compared to her normal near-silence with a trach nose (a known issue - the air escapes through the trach before it gets to her vocal cords). So we're thrilled that she tolerates it so well, and we hear more of her voice, which means we will be able to work more on speech.
Acorn, too, is in the communication loop this week. He's added quite a few spontaneous signs, along with sentences. And we started talking about vocabulary for his new communication device, which should arrive any day now.

In exploring a device set up the way his will be set up, I was amused to find, on the places page, that "church" was near the top (and the top is supposed to be where we put things that children use most frequently). Clearly that one can get deleted for now, leaving space for other things.

I was also amused at the extensive list of holidays. Groundhog Day was there - I'm guessing it's a pretty typical list of holidays that school kids talk about, but still...Christmas, Easter, and Hanukkah, but no holidays for other faiths, which around here is kind of surprising, given the large variety of cultures in our school. I'm guessing it's just a standard load from the manufacturer, but you'd think our county expert would have that well in hand. So we'll have to consider how we add our own holidays in -  changes to the device, by mutual agreement, will be made once a week with both school and family input, so adding them will require a discussion with his teacher and his SLP at school, and I'm not sure how I feel about that.

It would be so much easier if he talked.....