Mom in the Middle

I know I said I was going to write more. Follow-through has not been my strong point lately.

There's a post over on The Mighty about being the mom in the middle - about not quite fitting into various parenting categories.

I find, these days, that there are so many middles to be in the middle of. 

I'm no longer a 'medically fragile' mom...but we're still more complicated, medically, than most kids. 

I'm now officially an 'autism' mom....but actually don't identify with the perspectives of many vocal autism parents. 

I'm a cerebral palsy mom....but my kids walk and eat and run and climb. 

I've been a heart mom...but everyone was discharged from cardiology in February, for good, with totally normal hearts.

I sometimes think that we're too busy drawing lines....and forgetting to treat each other as moms, each of whom has challenges - some big, some little, but all important....

And I wish that we'd all think about that more often. Every mom is important. Every child is important. One's challenges may be bigger than another....but a small challenge can need just as much support from our communities as a big one, depending on the circumstances.

Long Time, No Post

You know, I felt like things were sort of winding down. Like, without trachs, and with Leaf's g-tube on it's way out (well, ok, out this summer, but it hasn't really been used since September), that there wasn't much else to write about on this crazy journey of ours, because things were going to be "normal," or at least something approaching normal.

Except....they're not.

There are still therapies. Still IEPs (and we've added in regular behavior check-ins for Acorn with the principal and his teacher). There are still people who don't get how much work we put in every day to have Acorn be as close to fitting in as he is (people who think, "he's so close, if you just did more with him, he'd be fine.")....as if fitting in is the be-all end-all of what someone needs to be successful in their lives.

Leaf is moving from her daycare in June, to a school-based preschool (which will be part time this fall, with a few hours in the special ed preschool). Daycare is unable (or unwilling) to move her into their preschool class with kids her own age, because they can't keep track of her there. Frankly, we get a lot of complaints about how she sneaks out of the current room, with 2 adults and 8 kids. And weekly reports that her feeding tube needs to be seen by a doctor (it looks amazing, actually - a little leaking is normal, a little irritation is sometimes expected, so I don't know what their issue is). And they've been asking us to help figure out how to keep her from pulling her hair....because, you know, we're child psychologists, and no one there knows anything about how kids behave.

Leaf is talking too, though much of it is scripted and repeating things she's heard. Still...we get sentences, at appropriate times, with appropriate meanings. After all our work to get her a communication device, she doesn't need it at all, and Acorn is using hers, because the approval for his is still in progress.

Acorn, too, has made huge strides. He says hi and bye to people. He signs, "May I leave please" to be excused from the dinner table. He can, with prompts, go into his closet, pick out a shirt, put it on, pick out and put on clean underwear and pants and socks, and find his shoes and put them on.

Speaking of underwear....Acorn is, finally, by and large, potty trained, and more and more independent about going (instead of needing to be told to go) every day....including going in stores and at therapy and other public bathrooms, which was unthinkable 2 years ago. We recently discovered he had a UTI because he went on the floor, with a horrified look on his face - he hadn't gone on the floor in a couple of months, and was normally not horrified by it, but just sort of "oh well" before.

So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.

Technology Speaks

Welcome to the October 2013 Carnival of Natural Parenting: Kids and Technology
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have written about their families' policies on screen time.

***

More than most families, technology is a central facet of our lives.

We have oxygen machines.

Machines that breathe when they can't.

Machines to suck out the mucous when a child can't blow their nose or cough it up.

Pumps to feed children through tubes in their bellies.

Machines to keep track of oxygen saturations and heart rate.

And we've agreed that we aren't about to let these things get in the way of our attachment to our children. We've worn them while carrying oxygen and feeding pumps. We've even occasionally (gasp!) Co-slept with a ventilator.

To be fair, we also watch a lot of videos - video helps with Acorn's comprehension, because he's so visually oriented and struggles with receptive language. They're part of our anti-anxiety routine for doctors visits and part of how we're learning sign language. More videos than I would ever have agreed to years ago. We're picky, though, in terms of what we watch.

But sometimes technology can bring us closer. The new gadget in our lives lets my son talk to us - to anyone.

While most parents rejoice in a child's first words, they still take them for granted. They expect words to come pouring out of their child, and eventually they start focusing on teaching them not to talk unless it's the right time or place. They learn to talk, and then to read and to write and to type, the flow of words moving faster and faster.

Communication is part of what makes us human. Communication binds us together. While sign language has served us well...Acorn's fine motor skills are not keeping up with his need to tell us what he's thinking.

To learn to use this device, we've spent a lot of time playing video games on tablets and phones - working those fine motor skills such as they are, finding their limits, and then trying to push further. Learning how to navigate tablets with their taps and swipes and different screens. Learning that touching different spots makes the device do different things....make noises, move, talk.

This isn't the sort of decision we make lightly, but we know Acorn has a lot to say, and it's nice to give him the opportunity to speak his mind.

And it doesn't hurt that there's less complaining at dinner when he can ask for exactly what he wants.

***
Visit Code Name: Mama and Hobo Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants (list will be updated throughout the day on October 8):

• Has Technology Taken Away Childhood? — Jennifer at Hybrid Rasta Mama worries that technology is intruding on the basic premise of childhood - active play in all forms! Join her as she takes a brief look at how play has changed as technology becomes more integrated into the daily lives of our children.
• Fostering a Healthy Relationship with Technology — Jenn at Adventures Down Under describes her children's love of screen time and how her family implements their philosophy and policies on technology.
• Kids Chores for Tech Privileges — Crunchy Con Mommy shares how tying chore completion to iPad privileges worked in her house to limit screen time and inspire voluntary room cleaning!
• Screens — Without the benefit of her own experience, sustainablemum explains her family's use of technology in their home.
• Screen Time - The Battle of Ideologies — Laura from Laura's Blog explains why she is a mom who prioritizes outdoor natural play for her kids but also lets them have ample screen time.
• The Day My iPhone Died — Revolution Momma at Raising a Revolution questions the role technology plays in her life when she is devastated after losing her phone's picture collection from her daughter's first year.
• Finding our Technological Balance — Meegs at A New Day talks about how she finds balance between wanting her daughter to enjoy all the amazing technology available to her, without it overwhelming the natural parenting she's striving for.
• Raising kids who love TV — Lauren at Hobo Mama sometimes fears what children who love screentime will grow up to be … until she realizes they'll be just like her.
• No Limits on Screen Time? Is that Natural? — Susan at Together Walking shares misconceptions and benefits of having no limits on technology and screen time in their home.
• Screen Time — Jorje of Momma Jorje shares what is currently working (and what hasn't) regarding screen time in her household.
• Positive Use of Technology with Kids — Deb Chitwood at Living Montessori Now tells about her family's experiences with early technology, shares helpful resources from around the blogosphere, and speculates on what she'd do as a parent with young children today.
• why i will never quit you, TV — How Emma of Your Fonder Heart came to terms with the fact that screen time is happening, and what balance looks like between real and virtual life for both her toddler AND herself.
• Technology Speaks — Janet at Our Little Acorn finds many uses for technology - including giving her child a voice.
• 5 Ways to Extend Children's Screen Time into Creative Learning Opportunities — Looking for a way to balance screen time with other fun learning experiences? Dionna at Code Name: Mama shares 5 fun ways to take your child's love of favorite shows or video games and turn them into creative educational activities.
• What parents can learn about technology from teachers — Douglas Blane at Friendly Encounters discusses how technology in schools enhances children's learning, and where to find out more.
• 5 Tips for a Peaceful Home — Megan of the Boho Mama and author at Natural Parents Network shares her favorite 5 tips for creating a peaceful home environment.
• Technology and Natural Learning — Kerry at City Kids Homeschooling writes about the importance of technology as a tool for natural, self-directed learning.
• Babies and Technology — Jana Falls shares how her family has coped, changed their use of, relied on, and stopped using various forms of technology since their little man arrived on the scene
• Kids and Technology — Rosemary at Rosmarinus Officinalis talks about the benefits of using technology with her preschooler, and includes a few of their favorite resources.
• Using Technology to Your Advantage: Helping Children Find Balance — At Living Peacefully with Children, Mandy discusses how technology can be used or abused and gives a few tips to help children learn balance.

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Oxygen Masks As Metaphors

If you've ever been on an airplane, you know the speech the flight attendants give includes the statement that you should put on your own oxygen mask before assisting other passengers.

That same sentiment goes around special needs communities fairly frequently too, as an admonition to parents to take care of themselves. And honestly, that's been bothering me off and on for a while now. 

Maybe for some people it makes sense. Not to dismiss the wide variety of special needs and medical issues and disabilities out there, but I'm sure that for some families, it really won't kill anyone if parents take a night off, hire a sitter, and go to dinner, even if it takes a lot to find a sitter that will keep their kids.

At our house, however....sitters are just not going to cut it. We need someone trained to care for Leaf - trach trained and reasonably good at assessing her respiratory status. We really need someone familiar with sign language for Acorn. And to find someone who can do both kids at the same time is clearly just not going to happen (even our primary nurse, who has cared for both of them individually over the years, has said they're too much for one person, which makes me wonder a bit about the days my husband or I have both of them by ourselves).

Besides...here, oxygen masks are real, not just a metaphor. If we don't put a real oxygen mask on a child when they need it because we're trying to put on our metaphoric mask, bad things happen. And that's not happening if I have any control over it.

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.

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.

"Forcing" religion on kids?

A lot of times, the statement is made in Pagan circles that parents are not teaching their children their faith because they don't want to force their child to believe something....that they felt like religion was forced on them in their childhoods, and they don't want that for their children.

I find myself thinking that this is a false dichotomy.

Many monotheist "our way is the only way" faiths teach from that perspective....and a lot of us who came from a faith like that, from families that insisted on doing things their way, probably remember all the questions in our heads, the things that didn't sit right, the things that were just nonsensical to us. And if you were a kid like me, you remember the way you learned that some questions are just not meant to be asked....the audacity to ask things that were "inappropriate" was met with everything from shame and ridicule (in my case) to outright violence (in cases I know of).

Change is seen as bad for many of these folks - seriously, I remember the drama when the head organization of the church of my childhood produced a "new" hymnal.  20 years later, there was still a division between churches using the "old" hymnals and the "new" ones....and there probably still is to this day.

Pagan faiths are different. Categorically, qualitatively different. Worlds apart.

We're not tied to one specific way of worship, to the same songs or motions or actions every week. If a particular God or Goddess isn't really our cup of tea, we don't worship/interact/work with them much, if at all. There are few things that are "my way or the highway" sorts of deals, even within a specific tradition or group - and even in the most well organized groups, someone who says, "we can only do X for this holiday" (or God or ritual or whatever) is likely to find themselves either thrown out of the group, or with much of the existing group leaving for greener pastures.

While I suppose it's possible for us to try to shove a very specific Pagan worldview down our children's throats, I have yet to meet a Pagan who'd actually do it the way that most monotheist families seem to do - the polytheist/pantheist/panentheist/henotheist/archetypal sorts of relationships we have with Deity seem to, by their very nature, preclude that behavior.

That difference alone means that even teaching our children our own personal take on religion won't make them feel that our way is the only way, and that not doing it our way makes them a bad person. There is much less focus on fitting in with the group and following group-think as the way to get ahead. There's no shame in moving to a different faith, or even a different "congretation" within the same faith.

Because, when you get right down to it, you can't force a child believe anything - and I think those of us who came from a more forced background know this at heart, because so many of us don't believe those things we were taught. You can encourage, you can teach your way, you can bribe or threaten or cajole, but you can't reach into their little brains and flip the switches. They figure that out for themselves, and then remember how we as parents approached it, and that colors their views as they grow.

So....share with your children the things that bring you joy and peace. Show them your daily and weekly and monthly practice. Let them know that there are other options out there, and explore when they're ready to do so. And worry less about being like your parents were, because you've already stepped outside of the worldview that allowed that behavior in the first place.

What Kind of Parent Are You

I know it's been kind of quiet over here lately. I've been working on a new project, writing some guest posts, and generally trying to keep my head above water amongst all the appointments and therapies.

It's a funny thing - clearly, I'm both a Pagan parent, and a parent of children with special needs, but a lot of times....I'm just a mom. We get the children ready in the mornings, make sure they're fed and diapered, try to figure out what to do about potty training, play on the swings, and bathe and pajama and do bedtime, just like everyone else.

And some days, that feels like it's plenty - like just being a mom doesn't leave time for being a special needs mom or a Pagan mom. It's something I've been thinking about a lot lately.

Some people think that Pagan parenting means teaching your child to write in the Enochian alphabet with the same ease they write in English (and frankly, if I was going to go that route, I'd go with runes - a high school friend used to take class notes in German using runic characters, just to mess with teachers, and that's way more my style anyway). Some think it's taking children to Pagan festivals. Some think it's having a little altar, or reading mythology or having a preschooler who knows more Pagan chants than typical preschool songs.

I don't know that it's any of those or none of those.....but I think there has to be a balance. A balance of living in the mundane world and teaching about the Gods and the energies around us.

And right now? Balance is not our strong point here. There's too many appointments.

*****

This past weekend I had 2 guest posts:
http://www.thepaganvillage.com/2012/04/beltaneplans/
http://thepaganhousehold.com/guests/energetic-household-cleansing 

I also started a project that may or may not help me out on this search for balance. Actually, it probably won't help with balance in the short term, but will likely help in the long term with adding Pagan things into our day. I'm starting a website for Moon school lessons and plans for children's workshops for festivals. The website isn't up yet, but you can read more and get updates on our facebook page: https://www.facebook.com/pages/Your-MoonDay-School-Adventure/233327923442045

Pagan Kids and Money

I've been thinking, as Acorn gets older, that we're going to have to start thinking about allowances and money. He's discovered coins - he's not sure what to do with them, but they're interesting, at any rate.

I'm fascinated by multi-compartment banks. There are two types: 3 compartments and 4 compartments.

The three compartment ones are generally set up for money to spend, money to save, and money to "share" by which some people mean charity and others include things like gifts to friends. Some people mean for that "share" bit to be tithing to church specifically.

                                  

Four compartment banks usually add "invest"  - money to be saved for the long term

                              

A lot of the places that invent these sort of things talk about tying money to family values using these banks. I'm wondering if there's a better model for Pagan kids?

Wiccan families might try to do some sort of 5 compartment thing:

earth - investing for the future
air - spend on things you need
fire - spend on things you want
water - saving for a rainy day
spirit - charity

I'm not super keen on all of those options, but I'm still thinking about them.

I also was thinking in terms of runes. Fehu is probably money you're going to save for the short term; Gebo for charity, Othala for long term investment. Maybe Wunjo for money you're spending?

What do you think?


*****

Obligatory disclaimers:
Images above are affiliate links to amazon.com. I get a tiny percentage if you click and buy.

Books for Pagan Kids

I recently ran across a neat website, paganchildrensbooks.com - they're an online indie bookstore that specializes in, as their name says, books for Pagan children. While they don't have every book I've found for Pagan kids, they have a ton of books I'd never heard of, which is quite cool, along with games & other Pagan-y things.

It's nice not having to try to figure out what might be Pagan and what might be overtly Christian, which is frequently what happens when I'm looking for books for Acorn and Leaf online. I don't mind a few minor references here and there, but clearly we need opportunities to teach our kids our beliefs and values, because so much of the mainstream world (most caregivers, teachers, playgroups, and the like) is going to teach them about Christianity - at least, the generic version of it.

There still aren't many books for the 0-3 age range here, but I'm having a hard time finding those anywhere. Sigh.

*****

Obligatory disclaimer: affiliate link here, but the opinions are mine. I get money if you buy stuff following that link - given the amount I'm spending on gas to head to the hospital every day, every penny helps!

What constitutes child friendly?

Recently, Acorn and I spent a little bit of time at our local Pagan Pride Day.

Now, I'll admit to being biased - the event has had several different organizers over the years, and none have seemed all that organized, but this year was particularly chaotic. There was still no published schedule the day of the event; presenters were invited to email or call to find out their time slots, and as a former (and probably future) presenter, that would drive me batty. There's no published vendor list (and I'm betting, based on what I saw, that few, if any, vendors made their table fees), so those folks aren't getting any continuing advertising for their efforts. The combination makes me a bit wary of future involvement - running an event like this isn't an easy task, but these seem to be basic things that ought to be a priority for a festival.

At any rate, I guess you could say this event was child friendly, because it was in a public park, and the playscape was the focal point for the kids. We didn't stay all day, but other than this, I saw no evidence of anything that would interest children, other than the vendor with tumbled stones (who, of course, caught Acorn's attention - she had carnelian, and Acorn is obsessed with all things orange).

I've been approached about running kids activities at other local events. Almost no one wants to do them, and my previous involvement in SpiralScouts marks me around here as someone who does "kid things." And right now, I'm not really up to doing anything....but quite frankly, I do more than just kid things, and I don't want to be stuck dealing with other people's kids all. freaking. day. - especially at a festival, where I'd like to have an opportunity to enrich myself as well as others.

I feel like I've complained about this before, and I probably have. I just don't know where I put the various rants :)

One festival I attend regularly has a kids & families programming track, but the quality and age options vary greatly, and parents frequently seem to feel it's meant as a babysitting service. Many places don't even have that though - kids are discouraged from attending, or there's nothing for them to do at all, so parents are stuck figuring it out themselves.

Would it be so hard to have a kids' area with activities? Little mini workshops?  Are there any festivals out there that do an amazing job of putting together stuff for kids to do? What would an awesome kids' program look like at a festival?

Blowing Bubbles in the Bathtub

Tonight during bath time, we discovered that the bath paints I bought on clearance didn't work, and Acorn wasn't into painting anyway.

So instead, we blew bubbles and poured water from one container to the other.

I was struck by this - funny, because it's not the first we've blown bubbles in the bath, or even in other parts of the house. But when I was a kid, both would have resulted in punishment. Bubbles were outside toys, so we didn't make a mess in the house.

Rules are funny things. Growing up in a house with a father who has sensory processing issues at best, and some sort of spectrum disorder at worst, we had a lot of rules that, looking back, had little rhyme or reason to them.

The thing is, those rules are so ingrained - so much a part of my psyche - that sometimes it's hard to break free of them even now.

But I do try - when my first reaction to something is "no" I ask myself why - what would happen if I said "yes," what would happen if I didn't yell.

And so, we blow bubbles in the bathtub some days. Once in a while we even blow them in the living room. I hope Acorn learns to blow bubbles sometime soon...and maybe then we can finally take them outside to play with us.

Not Here Today....

Today I'm over at Support for Special Needs, talking about how I view being a special needs parent from within my faith.

Virtues For a Special Needs Parent - part 4

The final installation on this series is on Mirth and Reverence. For me, these two have always been the easiest to tie back to that idea that "all acts of love and pleasure are her rituals" - it's easy to see mirth and reverence fitting in with love and pleasure, easier for me than some of the other pairs in the charge.

Mirth is a refuge for many special needs families - especially when we're together with other special needs folks. Who else gets the humor (ok, gallows humor, but we have to laugh about this stuff or cry) in things like feeding the midnight feeding to the bed for the third time this week? The amusement value in having a kid who tells off the therapist because he doesn't like her only really comes out when you realize that Acorn is non-verbal and rarely signs, and the therapist didn't know signs....but everyone else in the room knew what he said, and tried not to laugh until the therapist was gone. But the drama of having therapists, and trying to get kids and therapists to work well together is harder to explain to people who haven't been there.

Reverence, too, is part of this life. While we try to laugh at things....there are things that we just simply must take seriously. People we have to respect. And that's what reverence is all about - profound respect, awe, worshipfulness. There's reverence in our hearts for the little everyday miracles - in watching a child who once gagged at anything in his mouth devouring tomatoes, in hearing your child cry after months of silence, in a child's smile first thing in the morning. There's reverence in our thanks to the Gods for things gone right, and in our pleas to Them for things gone wrong.

It's also important to remember that while mirth and reverence are sometimes seen as opposites, they don't have to be - they're linked, and sometimes the most reverent thing to do is laugh. All acts of love and pleasure are her rituals, and laughing is a lot of fun, right?

So, go, enjoy your kids, and find something to laugh about today.

If you could stand where I stand...

I've been vaguely ill for about a month now, but I think that 3 doctors later, we may finally be on the path to a solution, even if I am still exhausted. Having had an extra nap today though, I think I now see why we have so many problems with our early intervention team. It's all about perspective.

We look at Acorn and see a child, whole and complete (with extra hardware, of course, but still, we see him as a unit, tubes and all). We see how far he has come. We see the everyday miracles - who knew breathing was so hard? - and the not so common ones (like a child so tiny his eyes were fused shut, learning to open them). We see his triumphs as proof that his weaknesses are improving. We see a child who communicates, even without words...and we see how ecstatic he is to communicate clearly when he manages to sign. We celebrate a child who nearly died (more than once), who is now happy and mostly healthy.

They look at Acorn, and see tubes. They see a child who didn't sit, crawl, or walk on time. They see a child who doesn't talk. They see a child who has not spent time around other children, and they believe this means he isn't "properly socialized." They see his faults, his weaknesses, and see his history as a tragic tale of things gone wrong. They see him as a disconnected set of broken parts, forever scarred by his experience, and inherently unhealthy because of it.

They see the holes. We see the process of building the skyscrapers that will one day cover the holes.

Its no wonder we don't see eye to eye on where he's going and how to get him there.

Virtues for a special needs parent - part 2

In case you missed the first post, I'm writing a bit about virtues - this series, in particular, focuses on the Charge of the Goddess, and how it applies to us special needs parents.

I have to admit, one of the reasons I broke these up was that I got through Strength and Beauty, and then sat and stared at Power and Compassion for several weeks, not even knowing where to start. Interestingly, it became clear to me the morning I started writing this what I needed to say - there have been too many examples this week to be considered coincidence.

This week's virtues from the Charge of the Goddess are Power and Compassion.

It may be different for other special needs families, but I see Power and Compassion as a really tense balancing act at our house.

Besides his pediatrician, Acorn sees more than a half dozen doctors, and another half dozen therapists. When he was in the hospital, there were even more. Many of these professionals are good people, who try to do the best they can for the kids in their care. But a surprising number of them get tied up in the idea of being "in charge" of Acorn's treatment plan to varying degrees, and forget that he's a child with wants and needs beyond their little corner of the world, and that we (his parents) have a wide variety of things to balance.

Acorn has a lot of anxiety about doctors, nurses, and medical procedures, as is to be expected. You would think that the various medical staff people that he deals with on a regular basis would be more compassionate - more willing to compromise, more willing to take things at his speed. "Power Over" is the usual way things work in the medical world, rather than "Power With."

Frankly, if they were more willing to talk to him about what they're doing before they start rather than, "mom, please hold him while I..." as they start pulling and pushing and making him do what they want, that'd be an improvement.

More than that though, we parents embody this balancing act as well. We have to discern which things in our children's lives we have power to change, which things our children have the power to change, and which things are not in our power at all. We have to know when to show compassion when our child struggles, and when to be stubborn and make them keep trying.

And we have to watch how we interact with other parents. When someone else feels overwhelmed in a situation far less intense than what we're currently experiencing, a lot of us struggle with compassion, and that struggle comes from wanting to control our own situation - from wanting the power to make our situation less intense, and from wishing the other parent had compassion for us and our struggles, instead of being so self-centered.

I'd like to think that I'm learning a lot about balancing power and compassion on this journey, but there are days I really wish I had more power and didn't need so damn much compassion.

Again, all acts of love and pleasure are Her rituals - use the power you have wisely, and try to be compassionate, especially when you most wish to not be.

Virtues for a special needs parent - part 1

In Doreen Valiente's version of the Charge of the Goddess, she says:

Let my worship be within the heart that rejoices, for behold, all acts of love and pleasure are my rituals. Therefore, let there be beauty and strength, power and compassion, honor and humility, mirth and reverence within you.

Just about all parents do things out of love for their children (even most really bad parents will tell you that they love their kids); we find joy in their smiles and their delight in the world is contagious. I'd like to think that most of us with special needs children have a little insight here though: we understand just how hard won some of those accomplishments are, no matter how big or how small.

What about that second bit though? That's an interesting list of virtues, and I've always found it interesting that they come in pairs. Over the next few weeks, I'm going to explore how they apply to Pagan parents with special needs kids.

First up is Beauty and Strength.

Whether or not we admit it, most of us special needs parents know Strength. It's strength that gets us through the hard days, that keeps us looking for the right mix of treatments and therapies for our kids, that gives us the power to argue with doctors, insurance companies, school districts, and more to get our children what they need.

It's strength that lets us keep going, day in and day out, strength that holds us together in the ER or the ICU, strength that helps us hide the tears (both joyful and sorrowful) when things catch us by surprise.

It's common for us to feel weak, because we aren't in control - but strength isn't about controlling the situation, it's about forging a path through the mess to get what we want.

And Beauty? I suspect most people think of beauty as hair and makeup and a stunning outfit over a perfect body - a culturally specific notion of all that, no less, that depends on your location and ethnicity and a million other things.

But I don't think that's the kind of beauty we're called to here. This is the beauty of the soul, the beauty of a sleeping baby, the beauty of the smile on a child's face when they finally do exactly what they were wanting to do. 

We're called to seek the beauty in the world around us, whether or not everyone else thinks it's perfect. My mom used to have a magnet with a pouting little boy, head and hands on a table that said, "I know I'm somebody, 'cause God don't make no junk!" - and no matter what God or Goddess or combination of Gods you worship, that's still as true now as it was decades ago when I first read that message.

All acts of love and pleasure are Her rituals. Hug your kids. Do something to make them laugh. Take care of yourself too - take  a long walk in the woods, soak in a bubble bath, sip a glass of wine - and remember that you and your child are beautiful, and you are Goddess.

Sorry for the lag...

Yeah, I know I'm behind here, not posting much recently.

It's been busy :)

Acorn was sick - 3 doctor visits in 10 days, lots of extra oxygen, a chest x-ray, fevers reaching 104°....and then it was done, and things are slowly getting back to normal.

Acorn finally re-started OT, and so there's a new therapist who I think will do just fine. He also got a new PT, because the other one got promoted. We all think the new one is an improvement over the old one anyway.

We had a new nurse this month, she lasted 3 shifts before I fired her, and her 4th shift sealed the deal - any nurse who tells me, as my kid is coughing and sputtering, that she isn't comfortable suctioning in a moving car, and could I please pull over, is just not going to work. Frankly, if I have to pull over for her to suction, I could just do it myself.

We were supposed to be going to Pagan Pride Day, but it got rescheduled. Whether or not Acorn goes is now up in the air, because we'd arranged for no nursing that day on purpose - can't very well drag our very Christian nurses to a Pagan festival. He can probably go for part of it, though, because we usually don't have nursing all day on Saturdays.

We went to a powwow. I miss vending at events like this, but it's just not been feasible to this point. Maybe next year...or maybe I'll just get my butt in gear and get into a couple galleries instead. I'm still torn on that point, and on how I'd set up a booth these days if I had one, much less how I'd keep Acorn from wandering off.

We're also building out an Xtracycle - a cargo bike, which we're putting a child seat on for Acorn. First bike ride coming soon, we hope, and there will be a whole post on the bike building.

Potty training took a back seat to illness, but more review posts are coming too.

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.


Mamawitch.com's parenting board - looks like the most recent posts  here were 2008


Wiccan Together's Parenting board - lots of discussions here

PaganParenting.org - 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

Pregnancy.org's Pagan Parenting threads

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


So...my 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.