Wednesday, May 26, 2010

and they think my kid doesn't communicate...

Today Acorn's OT from school was here.

He wouldn't cooperate. No playing, no eating.

When her half hour was up, she said she was going to go, and started packing up her stuff.

Acorn grinned, signed "great" and got started eating the jello and yogurt the OT had intended on having him eat for breakfast that he wouldn't touch.


On the down side, the agency that has been providing his insurance-paid therapy is now claiming he doesn't qualify for services at home, effective immediately. We can apply for the waiting list for a timeslot in their outpatient clinic, but we'd get all new therapists, and no choice of times, if there's a time available at all, since it's summer and anyone who has very limited benefits and isn't getting summer therapy from the school is burning their insurance paid therapy right now.

Tuesday, May 25, 2010

Our New Calendar Board

Tonight we installed the new magnetic marker board that we're going to use for Acorn's calendar, weather station, and eventually for other magnetic toys.

Here's the board, just outside his room, in the hallway that has become the playroom - we can raise the board later when he's taller:

Here's the other side of the hallway - not tot trays per se, but many of Acorn's toys are on the shelves here, for him to get out when he wants:

Here are the dozens of calendar elements I've laminated by hand.

Here's the calendar setup:

And here's the work box of activities for Acorn to work on:

Monday, May 24, 2010

Introducing a more formal toddler homeschool

Due to our ongoing issues with early intervention, and Acorn surpassing all current goals (other than, you know, actually talking), it's becomming obvious he needs a little more challenge in his life. So, with the help of the nurses, we're going forward with plans for a more formal homeschooling effort. Off the record, I'm using the name Spiral Oak Family School on paperwork that comes up (like discount cards and such).

This summer we'll be working on opposites, alphabet, matching, sorting, and some sort of alphabet study. We'll be doing some unit study work, using a curriculum called Earth*School, a really nifty "nature themed" preschool curriculum (which includes the Wiccan Sabbats in some of their units as holidays, so we're actually really happy about that find). And of course we're continuing to work on sign language and adding in a lot of sensory activities. We're shooting for "language rich" and things that challenge him, because his problem solving skills are quite wonderful, and we want to encourage that.

I need to get pictures of stuff as we go forward, but first I have to find the camera. *sigh* It went missing recently, and I haven't managed to locate where it wandered off to. Anyone want to point me towards some good camera giveaways?

This week I bought Acorn's birthday gifts, most of which are educational toys - puzzles with opposites, sorting/patterning toys, and the game "Memory." We bought him a learning tower (with family chipping in). We got the playhouse kit and easel to go with it, which will be really nifty.

We are also creating a calendar/weather board for him - we purchased a big magnetic marker board, which will be hung in the play area (the hallway/landing outside his bedroom) this week. I created printables for months, days of the week, seasons, and weather, printed them, laminated them, and put magnets on the back (and lemme tell you, doing "cold lamination" by hand sucks after about the 10th piece; I did 45 pieces yesterday). We also got some weather printables from 1+1+1=1 - specifically the images of the various weather types (sunny, rainy, cloudy, etc). Is it worth not spending $50 on one?  I suppose it probably is, but boy has it taken a lot of work - frankly, the marker board alone is more $$, but it's also more customizeable, so it's more useful in the long run. Besides, I think I want to add moon phases and the wheel of the year holidays (on an actual spinner even), so I think ours will be best for us.

Because of our set-up, we're using a modified workbox technique - there's a box, with each activity in a folder; nurses are free to select anything out of the box (at least one a day, more if the therapy schedule allows) - things that are one-time events are then removed; things he can do over and over are put back in the box.

[disclosure: no affiliate links here. just stuff we like]

Friday, May 21, 2010

On cows

My friend Kysilka, over at It's All Good if you Can Laugh, posted today about growing up in the middle of BFE, and calling the cops late one night (when she got home, because this was in the days before cell phones) because a cow tried to kill her, and she only escaped via her skillful driving.

I laughed, and then twittered:

hubby once hit cow w/ motorcycle; highschool "friend" hit cow with canoe.

She, of course, told me that I had to blog about that canoe bit.

So, imagine, if you will, a high school youth group on a summer retreat camping trip. I, growing up in the crazy house that I did, was not allowed to go on this trip, because even though it was a church trip, Bad Things(TM) might happen. (seriously). So this is second hand information, but second hand from everyone who went on the trip.

Our pastor's daughter (T) and one of my cousins (R) were along on this trip. Not the brightest girls, but bestest friends.

The highlight of the trip for most people was the float trip (which, for those of you not familiar, is a day of getting sunburnt, and possibly pelted by hail, while you try to keep from tipping your lunch out of the canoe into the river your canoe is travelling on). There's usually no rapids to speak of, and nothing tricky to scare people - it's just a day of floating down the river.

The guide at most of these tells you as they throw you out of the bus and into the river that there should be 2 people per canoe: the back person steers, and the front person paddles for speed. Unless you're lazy, in which case no one paddles, because the water is going the way you want to go anyway. Or unless your canoe is manned by two teenage boys who want to prove how manly they are, so they start paddling for all they're worth, ignoring the scenery.

Anyway. In Missouri, there are farms alongside rivers, because crops grow really well on flood plains, and because that means they don't have to worry about watering the livestock - they just mosey down to the river when they're thirsty, and actually go out into it when they're too hot. This is an important point.

As luck would have it, no one really wanted to be in the canoe with either T or R, so they ended up together, T in front, and R in back.

Somewhere along the river, they came to a farm. It was August, and the cows, being somewhat smarter than the people broiling in their metal canoes, were actually in the water.

As the girls are floating along, T says, "Hey, R, there are cows in the water! There's one standing there, heading right for us! Steer!"  (remember...the boat is moving on the water at a nice walking pace. The cow is *standing* in place, and the water is only about 3 feet deep)

R says, "Steer? I thought you were supposed to steer!"

T says, "No, I'm supposed to paddle, you're supposed to steer!"

All the while, that stationary cow is looking at them, chewing her cud, and standing there, coming right at them.

Finally, when they're within about 5 feet of the cow, T stops arguing with R, holds her paddle over her head with both hands, and starts screaming, "OhMyGodOhMyGodWe'reGonnaHitACowOhMyGod." R turns around, realizes that they're going to hit the cow, and starts screaming, "Paddle! Paddle!"

Everyone else stops what they're doing to watch the impending disaster, wishing they had video cameras, because this would totally have won them $10,000 on America's Funniest Home Videos.

The screaming continues, as the canoe lazily drifts down the river, and eventually does, in fact, run into the cow. The cow gives them a dirty look, moos, and walks away.

The moral of this story, folks, is that cows expect us to be smarter, what with our opposable thumbs and all, and they really don't think we should be invading their rivers.

Tuesday, May 18, 2010

early intervention...or not

Early this year, I thought we had things sorted out. We'd changed Acorn's EI teacher, gotten speech therapy started (against their normal policy), and things were back on track. The new staff were very upbeat, and very aware that he catches on to things and solves problems like a kid older than he is (even more so considering his adjusted age). They were aware of his need for control, aware that he doesn't perform on cue, aware that there are some sensory issues that we're still sorting out, and aware that he's slow to warm up to people. And I thought we had a working plan.

This week, it's come to a screeching halt again.

I'm so mad I could scream, even days after the first part of this was relayed by our nurse, and more than a day since the official email came from the school.

Acorn wasn't feeling well last week. We all had some sort of respiratory bug. He was barely tolerating his speaking valve.

The speech therapist from school has been to see Acorn maybe 4 times in the last 3 1/2 months. She's away at conferences or has other meetings during their scheduled appointment....her practicum student has seen him more often than she has. Her sessions with him are only half an hour, and she's routinely not on time.

This past week, the ST brought a phoniatrist (a medical doctor who, as far as I can tell, specializes in the throat and also is trained as a speech & language pathologist) to help make suggestions on where to go with his speaking.

Acorn made no sounds at all, the entire time they were there.

Keep in mind, this is a sick kid, being prompted by a stranger and someone he has seen only a handful of times, who is not good with new people and has a stubborn streak a mild wide, and a need to be in control twice that big.

The email I got yesterday includes the phrases "at this point and time it is hard to tell what [his] potential for speech is going to be" and that we need to push him to communicate "in hopes he will be able to shape his sounds into words one day"

Seriously? You don't think that this child will talk, and that he doesn't communicate? There's nothing wrong with his cognitive skills. Nothing wrong with his receptive language skills. His motor skills are coming along nicely, and for a kid who basically didn't eat the first 6 months of his life, he's only a little bit behind there, all things considered.

On the other hand, this is a kid who makes lots of sounds for us, and for the other speech therapist that he sees for an hour twice a week (m, n, k, g, and l, per her notes for me this week) - and she's thrilled with his progress the last 4 months, and pointed out that some verbal skills follow gross motor development, so the more caught up he is there, the better.

Communication wise, this is a kid who not only surprised all of us by signing "Signing Time" to ask to watch videos last week, but who has taken in the last 2 weeks to grabbing someone by the hand and dragging them to what he wants - the front door for outside, his CD player for his favorite music - down to putting your finger on the correct button to play music, or the lid if it's not what he wants, or the doorknob to open it to go out.

Right. I don't know why they can't see that he's communicating, just not in the way they'd like. I can't see why they believe that just because he doesn't often sign, he doesn't know what those things mean (I'm pretty sure he understands about 100 signs). More and more I suspect that when he gets around to actively using speech or sign, we're all in trouble because it'll be complete sentences.

In the meanwhile, I have to figure out what to do about their cluelessness. If they don't think he'll ever talk, what makes them think that their work with him is worthwhile?

And if this is the treatment a fairly typical kid, other than his medical issues, gets from this school district...we may be in trouble long term. And where does that leave kids with larger issues?

Sunday, May 16, 2010

comparisons and perspectives

We don't get out much, given that we're supposed to practice "social distancing" throughout the colder months to help avoid Acorn catching germs. He has one-on-one care here at home, so there's no need for daycare; there aren't many playgroups for toddlers of working parents, and the few for-pay classes for kids his age that are at times we can get there are just not oxygen tubing friendly.

Because of this, we've kind of lost touch with any understanding of what constitutes normal development - lost in the world of therapists and IEPs and goals. We've spent so much time worrying about how to get Acorn "caught up" (at 9 months, he could barely roll over, much less sit independently), that we forgot to keep track of what "caught up" means.

We spent several hours yesterday evening at a BBQ/potluck for a local attachment parenting group. They've always been super welcoming of us, 
even though we aren't quite as crunchy as many of them, and even though I'm not a stay at home mom. It was interesting to see Acorn around other kids about his own age - a real perspective changer.

Sure, they all talk...a lot...though not always intelligibly. That's something that he's still far behind on.  They eat a lot - some of them eat whole apples even. That's definitely not something Acorn can do. He walks only a little more tentatively than they do, but most of them have been walking almost a year, and Acorn has not yet been walking for 4 months. Several moms who remembered him from last summer (when we were just happy that he was sitting independently) were shocked and amazed - he looks so healthy, so normal... one mom pointed out that her son is a month older (actual age), and that she saw nothing in Acorn's actions that wasn't mirrored in her son.

Even our OT has said that if Acorn came into EI right now, he'd not qualify for occupational therapy (even though he avoids using one hand and has some sensory defensiveness) and probably wouldn't qualify for physical therapy either,  even though he can't jump and trips over sidewalk cracks.

So there we have it. Perspective. We still worry about the little things - after all, we've been well trained in picking them out. But we are a lot more comfortable with the idea that things are just fine as they are, and that all this therapy is working out.

Wednesday, May 12, 2010

Counting our Blessings

Acorn's cardiologist is an interesting guy. Every time we've met with him, starting at only a couple weeks old, he's told us what a blessing Acorn is, and that "God willing" he will grow up to be a healthy, strong young man. The interesting thing about that statement is that he's a devout Jew, and the Jewish folk I've known over the years usually aren't so sharing about faith, nor are they so quick to use their Lord's name. I love the fact that he's genuinely excited when things go well and when he sees improvement, and genuinely sorrowful when things aren't so promising - so many of our doctors are detached and seem not to care. I love the fact that when Acorn is scared or crying, the cardiologist sings to him in Yiddish, which usually results in Acorn quieting up, with a confused look on his face, like "OMG, I have no idea what he's saying - what's up with that?"

This sort of openness about faith bothers my husband, but I'm actually really comfortable with it - this doctor lives his faith in a caring, genuine way. And that's the kind of faith I've always tried to grow within myself. Several people over the years have shown me that there are ways to live as a part of a religious community that alienate others, and ways to live and conduct yourself that speak to what faith is all about. I'm not always where I'd like to be on that front, but I'm working on it.

Back to that bit on blessings though - Acorn's cardiologist was very happy this week when it was revealed that even as we're reducing the dosage of his heart medication, the signs of pulmonary hypertension are still staying away. Less than a year ago, he was still having nearly daily pulmonary hypertensive crises, including one this time last year, where we called the ambulance because we couldn't get his oxygen saturation up out of the low 80's with all the tricks and equipment at our disposal - they decided just to throw him and I in the ambulance and go, full lights and sirens, because they didn't know what to do either.

The cardiologist again repeated at the end of our visit what a blessing Acorn is, and what a blessing this improvement is.

The same day, a document was posted on the tracheostomy message board I frequent. The poster's child had a fairly rare condition, and an even rarer "experimental" procedure to save his life before birth (the child is a preschooler now, or thereabouts, as I recall). The document posted showed a literature review for children with this condition, and found only seven cases, one of them being this particular child. Of the seven, only this child survived more than a few weeks (though the parent comments that they know a couple of others about the same age who survived as well).

Kinda puts it all in perspective, doesn't it?

20 years ago, not only would Acorn likely have died, I probably would have too. Instead, we're happy, mostly healthy, and moving forward into the future.

We are blessed, by every definition of the word.

Thursday, May 6, 2010

Life's a dance

I went to the company sponsored National Day of Prayer event today, and ran into some old friends - people I knew back when I was a board member for the interfaith organization here at work. They never knew what to do with me, really, but they appreciated that I got stuff done. One of them said to me today, "hey, we never see you, what's up with that?" I said, "Oh, life's been crazy, but I'm trying to get out to a few things here and there."

Sitting through this service of prayers to other Gods, I had a bit of time to think. We've all heard that life's like a dance. And I suppose that's true. For most people, life is like dancing a nice graceful waltz, or maybe a tango - maybe even something a little more fast paced, like swing or salsa. But these are dances that, with a few hours of practice, almost anyone can do the easy version fairly competently. Changes and unexpected events may throw you off a bit, but it's fairly easy to step back in to the rhythm of life.

This special needs life, on the other hand, has a more complex rhythm - it's more like a funky 13 count beat, with occasional bars with a random number of beats thrown in for good measure.

The thing is, with practice, we can do this dance too. Oh, adding our own counterpoints can be tricky, and backbeats require a bit more grace, but over time, we get the hang of it. It's really hard to get back into the rhythm when we miss a step, but we get there eventually, and over time we get better and better at keeping in step in the first place.

And we have to get to the point where we aren't staring at our feet the whole dance before we can look up and figure out what we're missing in the rest of the room....

Wednesday, May 5, 2010

schools and neighborhoods

In June, we will have owned our house for 9 years. It seems like forever, and yet like there's no way we could have possibly been here this long.

When we found this house, it was love at first sight. The neighborhood was a secondary benefit, not much considered at the time. It's a mix of middle class families, spanning everything from lower middle to upper middle class, with many different ethnicities and nationalities included. Our house was brand new when we moved in, up in the front of the neighborhood, where a developer was tearing down the oldest houses and building new ones. While there are a few houses as new as ours on our street, most of the houses were 30-40 years old when we moved in, and a lot of 10-15 year old houses further back, followed by another batch of 30-40 year old houses. There are kids out in front yards playing, and riding their bikes and sometimes even playing hockey in the street.

One of the best things about our neighborhood, though, is that there's a public elementary school nestled back in the houses, with a large city park across the street from it. It's about 3/4 of a mile, give or take, which is well within what I'd consider walking distance - the school I attended as a child had a policy of not bussing kids who were a mile or less from school. There are no major streets to cross to get there, only quiet neighborhood streets, with sidewalks for all but one very short block.

Tentatively, this is the school Acorn will attend when he's kindergarten age - it's the default assumption, at any rate. There is a Montessori charter school that opened a few miles away last year that we'd like to check out as an alternative....but...I mean, we both work, and we don't really think a private school is the best use of our money, so public or charter is the most likely option, really. As "gifted program survivors" though, we're keeping our eye out for other options, because we have an agreement that school should never be something Acorn dreads, and if there's ever a point where things aren't working for him, we will make sure things change to something more reasonable. But I love the idea of him being able to walk/bike to school.

One evening last week, since the weather was nice and I needed some exercise to burn off a particularly mood-challenged day, Acorn and I walked (well, I walked and he rode in the stroller) to the park so he could explore a bit, swing on the swings, and maybe experience some interaction with people. Coincidentally, it was kindergarten orientation night at the school - with kindergarteners and their parents swarming the building, practicing getting on and off the bus, and getting acquainted with the school building.

Interestingly, as we started for home, we caught the tail end of things, as families got in their cars to leave. We watched numerous families park their cars along our route home - many of them within a quarter mile of the school. How crazy is it to drive to something that's a 5 minute walk from your house?

I have been wanting to find ways to do more of our local shopping on foot or on bike - most of our errands are within 2 miles of our house. I'd been thinking that whiile I'm not sure I'd let Acorn walk by himself when he's 5 or 6, that maybe we could team up with other neighborhood families so that kids could walk together, or maybe with one chaperone. But if the people who live right there, where they could stand in the front yard and watch their kid all the way to the door of the school, aren't walking, is there really any hope for that?