Kindergarten and More

Psssst:  Did you know I'm giving away The Earth Child's Handbook, Book 1 & 2, over on janetcallahan.com?  Giveaway ends October 1, so go enter now!

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Ai yi yi, what a month. 

Acorn started kindergarten:

It's been quite an adjustment, all in all. New building, new rules, new people, new schedule, packing his lunch every day....but it's gone well. Acorn's aide (he has 1:1 support all day) signs, which has been a huge thing for him and for us. We're going to meet all the therapists next week, and discuss whether there need to be adjustments to his IEP.

Also, Leaf finally got AFOs, after arguing with one doc, getting SMOs that no one thought actually did what they needed to do, arguing with the doctor again, and changing doctors:

We've also had a UTI (acorn), a bout of atelectasis (Leaf), exhaustion (mama and daddy), and generally kept our heads above water.  What a concept!

How's your school year going?

We Know Too Much

I had something else in mind for today, with school starting tomorrow and all, but it's been a rough couple weeks amongst our special needs friends.  We'll get back to school stuff later...

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We know too much.

We know that every surgery has risks, and we know people who've seen them first hand.

We know that surgery is sometimes (more often than we'd like) our only option.

We know that an ominous silence after someone posts "heading to the hospital" isn't good.

We know when a friend says they're taking their child to the emergency room whether it's likely to be a short stay or not, based on the issues presented.

We know, because we know them and their child, whether that stay might mean not coming home at all.

We know that those blog posts with cryptic titles usually mean nothing good.

We know which ER to go to in our area, based on what we need and what doctor our children need to see.

We know that we often know as much about our children's specific issues as the doctors who care for them.

We know that as a group, moms and dads of children with medical issues are often smarter than doctors.

We know more than the EMTs who come when we call 911.

We know that the nurses who work in our homes are a blessing and a curse.

We know that hospital nurses likely don't know much about some of the things that are our daily lives.

We know what many diseases entail, even if our children don't have them, and we weep with friends when their children are diagnosed, because we know how the story will end.

We know that doctors are people too - they're not gods, they make mistakes, and they don't know everything.

The Chaos of Nursing

Can I just tell you how challenging it is to have nurses here?

Have I mentioned how hard it is to keep anything and everything "weird" picked up and out of sight?

We fail at that regularly - I know, because one of our new nurses is Pagan, and we know because she decided to ask based on a few things left out here and there.

I mean...it's really really really nice to have a Pagan nurse.

Really nice. A relief.

For the first time ever, we went to Pagan Pride Day as a family (and boy did we need the extra set of hands!) - something we've never attempted before, because we were afraid to ask any of our obviously Christian nurses to go. We don't have to watch every word out of our mouths. And she's a really good nurse. Maybe not as experienced as some (she's younger than I am), but smart, on her toes, picks up after herself (a big pet peeve here of late), pays attention to Leaf's subtle signals, and has managed to gain Leaf's trust in only 5 shifts - that's a big deal.

And it's a nice thing for her too. If you can imagine working for families all the time who honestly believe that anyone who believes what you do is evil, you can guess how some of these have gone for her, even without her coming out of the broom closet.

Of course, we also know that the agency (and many current and former nurses) think we're odd. I think we're odd, at least compared to most people I know, so it's not a shock, but if that's what they think based on our carefully cleaned up home.....goodness knows what they'd think if we didn't.

Our favorite nurse is out on medical leave. We've oriented 3 new nurses in the last 6 weeks and we still have open shifts. More new nurses to come....more opportunities to scare people away.

Sigh.

Milestones

Normally around here we talk about inchstones, but in this case, I think it's really time to use the word milestone.

Earlier this week, sitting in the waiting room for the speech therapist, Acorn got out his communication device, and from the main screen, he hit the following buttons:

Quick Talk (a page with lots of sentence starters)
I want
to eat
snacks
chips

"I want to eat chips"

A whole sentence. By himself.

When I told him we didn't have any, he said it again - several times.

Eventually, we went back to our speech therapy session and he said the same thing to the therapist. She found him some cheese puffs, and then asked for more, saying both "more" and "I want that" with his device, and with sign language, multiple times.

Hooray for breakthroughs!

Perfect

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.

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.

Actually...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.

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....