This communication stuff is complicated

On top of everyone being sick, again, it's been a week to deal with communication around here.
Yesterday we got approval for Leaf to use a speaking valve, and she does really well with it. She was back on the vent full time 2 weeks ago with an illness, and the amount of babbling she did was striking compared to her normal near-silence with a trach nose (a known issue - the air escapes through the trach before it gets to her vocal cords). So we're thrilled that she tolerates it so well, and we hear more of her voice, which means we will be able to work more on speech.
Acorn, too, is in the communication loop this week. He's added quite a few spontaneous signs, along with sentences. And we started talking about vocabulary for his new communication device, which should arrive any day now.

In exploring a device set up the way his will be set up, I was amused to find, on the places page, that "church" was near the top (and the top is supposed to be where we put things that children use most frequently). Clearly that one can get deleted for now, leaving space for other things.

I was also amused at the extensive list of holidays. Groundhog Day was there - I'm guessing it's a pretty typical list of holidays that school kids talk about, but still...Christmas, Easter, and Hanukkah, but no holidays for other faiths, which around here is kind of surprising, given the large variety of cultures in our school. I'm guessing it's just a standard load from the manufacturer, but you'd think our county expert would have that well in hand. So we'll have to consider how we add our own holidays in -  changes to the device, by mutual agreement, will be made once a week with both school and family input, so adding them will require a discussion with his teacher and his SLP at school, and I'm not sure how I feel about that.

It would be so much easier if he talked.....

Under the Sea Sensory Bin

This past week, I dug out the Samhain sensory bin from last year. We hadn't done one in a while - this summer we had the sand and water table outside, which we used on a nearly daily basis when the weather was nice:

But now that it's chilly again (low 40s and rain), we need some indoor options. Especially since we're looking at a likely diagnosis of sensory processing disorder for Acorn  (IEP next week, hopefully with helpful results).

He's been enjoying the rice in the bin this week, and Leaf has been cautious about it, but since it's now November, it's time for a new bin, and I'd had a water theme in mind for quite a while, so here we go.

  
 

We have a new bin - this one is clear, and has a latching lid that Acorn can't open.  I'd heard about water beads a while back and thought they would be really neat for a water themed bin, so I started half of the package soaking a few days go. Unfortunately, what looked like a lot of beads turned out to only be about 3/4 of an inch in the bottom of our new bin (and it's smaller than the dishpan I was using before, so it'd've been even less there). Since I'm swapping out bins on my day off, I just added the rest of the package of beads, a few cups of water, and threw the fish and such in on top of them. I made sure to leave a spoon and some cups of various sizes for pouring the beads back and forth.

I expect this will be a challenging texture for both Acorn and Leaf - we'll see how they do, because too challenging might result in a quick change of bins, and I only really have one other theme in mind.

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?

Busy, busy, busy

Oh yay, spring birthday season (we have 1 child in late May, one in mid-June, and my mother-in-law in June too) is over. Father's day is done too. But that's not all that's kept us busy.

There's been urgent letters to the school asking why Acorn hasn't had an AAC evaluation yet, and how that impacts his IEP....and arrangements to meet with a lawyer, who it looks like will be following along back stage, and putting us in touch with a good advocate.  Expensive, but....gosh I feel better having explained the whole situation with the school's anti-ASL stance and their lack of progress on goals that Acorn has already met at home, and having him backed up my feelings about the situation. I walked out of our meeting with suggestions in hand....so that was well worth the hour drive each way and the not insignificant check I wrote for the privilege.

There's been a push for us to provide Acorn with a stand-in AAC (augmentative and alternative communication) device until the school or private therapy (or both) got around to doing something along those lines, so we ended up buying him a Nook and installing Tap to Talk. Now to get him to use it....

Acorn has been discharged from PT and OT, with loads of instructions on things he needs to practice at home. He's also had his last day of school for the year, and been set up to go to Extended School Year (ESY) - the special ed version of summer school - though it seems quite useless, being 90 minutes twice a week.

Leaf is making strides too - not quite sitting, but close, and mimicking everything and anything. And eating baby food- who'd'a thunk it?

There's also been a lot of running around, trying to figure out what projects need to be done during my 4th of July week of forced vacation. My husband may be taking that week off too, so it's looking like power washing & staining the deck, and replacing the water heater, dishwasher, and freezer are all on the list. We're still running on the used water heater a friend installed when ours went out about 2 years ago. The dishwasher leaves dirty dishes frequently. And we will likely be giving our current freezer to K, and replacing it with a bigger one so that we can work on eating out less.

And I've been writing stuff for MoonDaySchool.com, which you should check out if you haven't already.

Plus, you know, normal things like sleeping and eating and changing diapers and going to work and all....because we don't have enough going on as it is.

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.

But he needs friends!

You know, having a special needs child means you get some interesting looks from people when you're out.

Interesting is probably too nice a word - Janis, over at Sneak Peek, writes about the rudeness she encounters towards her son.

I'd like to point out another problem this brings, though.

Our school IEP team strongly believes that Acorn needs "friends"  - that interacting with children his own age is important. I'm not completely sold on this idea, since children at this age are more likely to play "near" each other than "with" each other, but they're adamant that it will improve his language skills.

At any rate, they keep asking, "well, don't you have other kids in the family he can play with?"  Our response continues to be, "no, he's an only child, and an only grandchild."

"Well, what about neighbor kids?"

Ok, seriously. We can't go play at the park without people saying really awful things and parents pulling their kids away from us. How, exactly, will we convince anyone to get close enough, long enough, to actually play with him if everyone treats him like a sideshow?

I don't know. At the moment, it feels like another case where the school just doesn't get Acorn's condition and needs.