Wednesday, August 29, 2012

Busy busy busy

It has been a rough month here at Chez Acorn. Everyone's been sick, and either passing the germs back and forth, or not actually getting over the illnesses. Between Acorn and Leaf, there have been 7 pediatrician's visits, 1 vent clinic visit, 1 cardiology visit, 1 ENT visit, 1 referral to a new pulmonologist (which is scheduled for November, but the pediatrician wants to happen sooner), 3 rounds of antibiotics, 1 new inhaler, 3 rounds of oral steroids, 2 steroid shots, and a whole box of albuterol. 

And that's not counting the meds & appointment I got for getting the same sinus infection.

On top of that, Acorn has had 2 different evaulations for assistive technology/alternative & augmentative communication (AAC) devices.  I am meeting with his teacher later this week; she's hoping to move up the timeline that would get him a device sometime in October.  That's not to say that all is hunky-dory with the school; there's still the issue of how they're communicating in the meanwhile, whether he'll use their device, the ignoring our request for a meeting to review the kids' IEPs, and their inability to get the bus schedule right.

We got 2 new nurses, and one has already quit. The rumors about why are pretty funny, but since I'm not supposed to actually know why she doesn't want to work at our house, I won't share here.

We didn't make it to Pagan Pride Day. I'm somewhat bummed by that, but I know that staying home and keeping our snot to ourselves was the best option. I'm hoping to get out to more events next year, and to start talking about travelling a bit more, since we expect Leaf will no longer be sporting a ventilator at some point. I haven't put in any classes for Convocation, and since the deadline is Friday night, I'm guessing I won't actually be putting in anything.  I'm already behind on writing this month, and it's looking like I won't catch up in the next few days.

There *are* some fun things in the works though - I'm planning a couple outings for local trach families, trying again for a Pagan playdate this month, moving most of my ebooks off my own website and into amazon and smashwords for my own sanity, and working on a couple of childrens' books. Leaf is as cute as ever and growing by leaps and bounds, we're getting a vitamix to blenderize part of her feedings (and maybe some of Acorn's too), and we've all spent a lot of time out on the deck, playing in Acorn's sand and water table, so it's all good.

We just keep putting one foot in front of the other, and hope that next month is a little less intense (though with Acorn going back to school starting Wednesday and IEPs and appointments, who knows how it will all play out?

Friday, August 10, 2012

Complex medical needs final exam

In order to survive parenthood with a complicated child, you're gonna need some special skills. This final exam is based on real experiences, not all of them mine.

It is likely that without experience you will fail this test, but that's ok - this special needs parenting gig comes with on the job training (by which I mean sink or swim). The smiles are worth it though.

Question 1: child's pulse ox reads 30 points higher than normal, with no other symptoms. Do you:A. Try re-adjusting pulse ox
B. Administer some sort of pain reliever
C. Call pediatrician
D. Increase oxygen
E. Go to ER

Question 2: your nurse for the night was supposed to arrive 15 minutes ago and hasn't called off yet. What do you do?
A. Call agency to complain (again)
B. Start praying because you haven't had a nurse any of the last 4 nights and you desperately need sleep
C. Know not to bother checking the schedule because Nurse X is always late (but has never missed a shift) so it's probably just her night

Question 3: your child has "loose stools" as they say due to being on their 2nd antibiotic in 10 days for an infection that won't clear. His diaper comes off while still inside his onesie, resulted in him being covered in poop from toes to armpits. Do you:
A. Pass out from the stench
B. Strip naked & carry child into the shower, figuring you can keep the water out of his trach if you're careful
C. Leave a tub full of toys for the nurse to clean - she needs something to keep her awake anyway
D. Change vent circuit rather than trying to clean corrugated tubing

Question 3: your child is sick. Do you:
A. Put on a movie to help them feel better
B. Refuse to put on a movie because they will have a meltdown even if you put in the movie they ask for

Question 4: it is IEP time. What percentage of the things agreed to (on tape) will actually be implemented?
A. 100%
B. 75%
C. 50%
D. Hahahahahahaha! OMG you fell for that stuff they said?
E. Depends on how much you're paying your advocate

Question 5: your child is sick. How long will it take you to get a doctor to see them?
A. Within a day
B. Sometime this week
C. They're now (August) scheduling appointments for January
D. Depends on how crowded the ER is

Question 6: you catch your night nurse sleeping. Do you:
A. Fire her on the spot
B. Tell her not to let it happen again and then set your alarm so you can check
C. Tell agency to warn her
D. Nothing, because you're already short a night nurse and how would you manage with one less?

Question 7: your pediatrician tells you to go to the ER. What happens?
A. Chest x-ray and they send you home
B. Admitted to PICU

1. A, B, or D
2. Any answer is acceptable
3. You're screwed either way. Good luck.
4. I'm going with E
5. Depends on the doctor, but it's probably not today.
6. Depends on how many other times you've caught this nurse sleeping.
7. Whichever you think they should do, the hospital will do the opposite

Tuesday, August 7, 2012

Communication is Key

It's getting to be IEP (Individualized Education Plan) season around here again. I probably won't be posting all that much up front about it - this time around we have an advocate because of all the problems there have been in implementing Acorn's plan this past school year (which have spilled over into the summer session too). And Leaf's IEP is really only marginally better, though the constraints on Early Intervention suggest to me that there isn't as much room for improvement there.

One of our key concerns for both children, given their medical history, is communication.

Acorn says less than a dozen words - and many of those, you have to know him to understand.

We sign at home. Not fluent ASL, but something akin to SEE (signed exact English) - we sign the words we know while we're saying them. I counted last week - Acorn uses about 4 dozen signs consistently, another 3 dozen or so inconsistently (or they're newly demonstrated). Our guess is that he actually understands several hundred.

It's not hard to imagine that Leaf too will be fairly adept at signing, since we already sign with her and around her and expose her to it all the time.

Our school district has expressed concerns about this, because in the view of those we've worked with thus far, sign language of any sort is "non-functional" because other people can't understand it unless they know it. They would rather Acorn use a communication device - an electronic device that says things when you press buttons (or, as many of the newer ones are, an electronic touch pad with configurable screens where touching the images makes it say things).

They've supposedly used the low tech version of this -  PECS (Picture Exchange Communication Symbols) cards - in the classroom, but have only documented getting him to use one card thus far.

We really don't much care either way - we suspect that Acorn and Leaf will find their own mix of using any or all of the above, along with verbal speech, depending on the situation at hand, until such time as they're fluent enough in English to make it their primary (but maybe not only) communication mode.

This week we had a private evaluation for a communication device; the school is supposed to be starting their evaluation (finally) this week. I'm not sure what either evaluation will recommend (though I've heard that the school's will likely recommend one specific piece of equipment because that's who they're contracted with). But among the verbal suggestions from our evaluation last week was that we needed to work with Acorn on getting the idea that he can tell us what he wants by pressing buttons or pointing at pictures. And another was to use the same sorts of pictures to build him a schedule that he can look at and point to, in the vein of "do this next."

So...we've been playing with our own equipment and some free and low-cost communication apps for Android. I'm making our own set of PECS cards. I've spent a lot of time looking at how others use things like PECS with non-verbal children. There are foods and holidays and articles of clothing, toys and feelings and medical cards too - just about anything you can think of.

In a lot of cases, specific sets of cards are used in specific circumstances to help the child work through what they need to do. For example, a bedtime set might include taking a bath, putting on pajamas, brushing teeth, combing hair, washing face, going to the bathroom, saying prayers, and sleep. We saw one set of 4, with a specific type of communication device, that sang "Itsy Bitsy Spider" one line at a time as you pushed the buttons.

And that got me to thinking (yes, I do get all the way back around to being a Pagan parent here)....what sorts of cards would we have for a ritual? or for going to a festival? Could we do chants this way? Prayers? How would we describe what we're doing in a two inch by two inch square?

Thursday, August 2, 2012

"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.