Friday, July 26, 2013


On one of the groups I'm a part of, a mom asked when we knew that our children would have special needs, and one of the responses from another mom was that her child was perfect until the day she was born. I know this mother loves her daughter greatly...but that struck a chord with me.

At our worst with Acorn, during the one point in his life that there really was fear that he would not survive, I asked a good friend what we would do if the doctors couldn't "fix" him. The friend told me that I shouldn't think in terms of Acorn being broken - sure, not everything was quite up to spec, but if I started thinking that way, I wouldn't be able to celebrate his successes.

And that's true. Over time, I've come to see both Acorn and Leaf as perfect - just like every other child is perfect, no matter what challenges they face. There may be parts of them that don't work the same as most people.....but all of us have things that make us unique.

Even so, we're still perfect. They're still perfect. Their special needs and disabilities don't take away from that perfection.

Friday, July 19, 2013

Pagan kids and our religious freedoms

I've been thinking about this topic for a bit after running across an out of print book this past week, titled  Pagan Child: A Handbook for Teachers, Carers, Childminders, and All Those Involved in Looking After the Children of Pagan Parents  by Dee Weardale. This book was published in the mid-90s in the UK, just a couple of years before I found Pagan folks at college and learned that there were other options when it came to religion.

I've talked before about the challenges we face when it comes to caregivers. Clearly, though, I'm not the only person who has wondered about your run of the mill daycare and our kids.

Around here, a fairly sizeable percentage of daycares and preschools are run by Christian churches. It's an obvious choice for them - if they're big enough to have classrooms for their Sunday School programs, they've got those rooms sitting largely unused all week.

Our current daycare for Acorn did ask about our faith - the owner ran across one of my blogs. But she was respectful, and it has never come up again. Our previous daycare, however, told me at one point that they "do a Christmas program, with traditional songs and stuff" and that they planned to continue to do so, because "we don't have anyone here who objects." Which I guess is code for "everyone here is nominally Christian or afraid to say otherwise."

But that does leave me wondering - in some areas, it's likely that church-based centers are the only option (or the only affordable option, which is a totally different post for another day). Even all of the small centers I interviewed that advertised themselves as being "green" or "organic" turned out to be heavily Christian based - some even using pre-packaged Christian curriculums, even though that wasn't mentioned in their ads at all. So even here, with one of the largest Muslim populations outside of the Middle East, along with sizeable populations from all corners of the globe, daycares that aren't Christian are hard to find, and are so much the norm that they don't see a need to mention it.'s somewhat interesting that both our local Hindu temple and one of our Mosques here in our small suburb have Montessori based preschools....

So...what should daycare providers know about our kids? Mine aren't likely to say anything that might cause a stir anytime soon, but I bet yours talk about holidays and witches and that sort of thing once in a while.

Tuesday, July 16, 2013

Feeding Tubes Aren't Evil

Have you seen this video going around of Mos Def having a Guantanamo Bay style feeding tube put in?

Have you read any of the stories in the news going on and on about how awful and disgusting the process is in relation to the Guantanamo Bay situation?

Do you remember Kathie Lee and Hoda talking about the feeding tube diet fad last year (fast forward to about 5:11 into the video)?

Feeding tubes are a useful tool when used appropriately. NG tubes *can* be traumatic to put in. But the media keeps leaving out one important thing: many adults and children (like mine) are alive because of feeding tubes.

I really wish the media could separate "feeding tube" and "reason it's being used."

Then again, that's true of a lot of things in the media these days....

Monday, July 15, 2013

You're Doing It Wrong

Ever have one of those "Ah ha!" moments when you figure out why something isn't working as expected?
We've been fighting Acorn about keeping the sensory bin contents in the box - or at least on the shower  curtain we're using as a drop cloth. But somehow the desire to pour rice (or any number of other things) out on the floor just past the edge of the plastic is too strong.
He started OT at a new therapist this past spring, and they have beans & rice in small swimming pools. He never dumps it over the side there, and rarely even throws the contents of their bins.
This week I bought a small pool. Sensory bins are great for keeping his hands busy post-surgery, and distraction is always good. Sure enough, it was nearly half an hour before we had rice on the floor....even with him pouring rice from a standing position.

Friday, July 12, 2013


Today (when I'm writing this, which is still technically Thursday), Acorn had surgery to finally finish the hypospaduis repar that we started just about 3 years ago.

It's been a tough evening of pain management and distraction (and over an hour spent tracking down a specific med he needs post-surgery). Acorn has screamed himself hoarse today, and is far too jumpy for my comfort.

And it followed a long morning of not eating, being the next-to-last case in the OR, and trying to get my own fasting blood work done after he went back, but them taking over an hour of what turned out to be a 90 minute surgery.

We're hoping tomorrow (today by the time you read this) will be better.

A funny thing happened in the pre-op room. We got several staff members that didn't know us, and one asked if this was Acorn's first procedure. We kind of laughed and said no. And then they wanted to know what else he'd had done. A quick run through puts this at either 14 or 15 procedures total....and he only just turned 5 a month ago.

For those of you with kids with medical issues, you'll understand when I say that's not really a lot of procedures. After all, another friend's daughter had a procedure done last week that puts them in the mid-70s, count wise, and her child is only 7.

On the other hand, those of you more familiar with typical kids might be thinking this is an outrageous number of procedures - I remember one mother I know getting upset that her 3 year old was going to have tubes put in her ears, and it would be her first surgery ever, and she was just too young for that sort of thing. That same week Leaf, at 8 months, was having her 4th procedure, and that didn't count the month that she spent sedated.

It's all about perspective, you know?

Some days, it's easier to find that perspective than others - and I'll be the first to tell you that compassion for others is easier on days when you find that perspective. I'm guessing that it's easier to find perspective on days when you don't have a sobbing child, but right now, even the fact that I have to say that suggests to me that there are some people (on both sides of the special needs divide) who will never find it.

Wednesday, July 3, 2013

Pagan Festivals and Kids

I'm just going to put it out there that if things were not so complicated this year, and if I'd known about it sooner, I'd've be pushing for us to go here:

This is how we used to run our big SpiralScouts camping trips when we were leading a group - long before we had kids, long before ventilators and pulse ox machines and tracheostomies.

Lots of activities - water play, crafts, hiking, outdoor skills. Lots of good food, and shared meals. Story telling, enjoying nature, and a community of families who came together for the weekend.

Don't get me wrong, these events were exhausting. We frequently had 50 or more campers to plan for across anywhere from 2 to 5 SpiralScouts Circles and Hearths. But we also split the work. We divided up who was responsible for which meal, each smaller group took on an activity for the whole group, and there were plenty of adults to work with smaller children on things at their level while the bigger ones worked on more advanced skills with other adults.

The kids were the focus, but the adults had fun all the same. Child care wasn't an issue, because the whole event was child oriented. Even for families with special needs, things could be situated to work - we took dietary restrictions into account when planning meals and snacks, we could be flexible as needed to work with a child's specific needs.

Last year it was clear to us that Acorn wasn't going to be successful right now in our local SpiralScouts group (or any other scouting type organization, actually). The debate of whether to do our own Hearth or whether to just wait and see if he was more ready in a year or two was won by exhaustion and apathy - we've done nothing this year, and have not decided about next year.

But sooner or later, I think we'll end up doing something. I just don't know what yet.