Long Time, No Post

You know, I felt like things were sort of winding down. Like, without trachs, and with Leaf's g-tube on it's way out (well, ok, out this summer, but it hasn't really been used since September), that there wasn't much else to write about on this crazy journey of ours, because things were going to be "normal," or at least something approaching normal.

Except....they're not.

There are still therapies. Still IEPs (and we've added in regular behavior check-ins for Acorn with the principal and his teacher). There are still people who don't get how much work we put in every day to have Acorn be as close to fitting in as he is (people who think, "he's so close, if you just did more with him, he'd be fine.")....as if fitting in is the be-all end-all of what someone needs to be successful in their lives.

Leaf is moving from her daycare in June, to a school-based preschool (which will be part time this fall, with a few hours in the special ed preschool). Daycare is unable (or unwilling) to move her into their preschool class with kids her own age, because they can't keep track of her there. Frankly, we get a lot of complaints about how she sneaks out of the current room, with 2 adults and 8 kids. And weekly reports that her feeding tube needs to be seen by a doctor (it looks amazing, actually - a little leaking is normal, a little irritation is sometimes expected, so I don't know what their issue is). And they've been asking us to help figure out how to keep her from pulling her hair....because, you know, we're child psychologists, and no one there knows anything about how kids behave.

Leaf is talking too, though much of it is scripted and repeating things she's heard. Still...we get sentences, at appropriate times, with appropriate meanings. After all our work to get her a communication device, she doesn't need it at all, and Acorn is using hers, because the approval for his is still in progress.

Acorn, too, has made huge strides. He says hi and bye to people. He signs, "May I leave please" to be excused from the dinner table. He can, with prompts, go into his closet, pick out a shirt, put it on, pick out and put on clean underwear and pants and socks, and find his shoes and put them on.

Speaking of underwear....Acorn is, finally, by and large, potty trained, and more and more independent about going (instead of needing to be told to go) every day....including going in stores and at therapy and other public bathrooms, which was unthinkable 2 years ago. We recently discovered he had a UTI because he went on the floor, with a horrified look on his face - he hadn't gone on the floor in a couple of months, and was normally not horrified by it, but just sort of "oh well" before.

So...yeah. There's still a lot going on. There's still stuff to work out. Less complicated? Maybe...but mostly just differently complicated.

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?

Lunch For Acorn

I'm still a little shocked that Acorn will be going to kindergarten in the fall.

One of our big concerns is lunch - he's picky, and it's an all day kindergarten program, so we'll have to work something out, lunch wise. Though the staff at his new school are quick to assure us that many kindergarteners can't figure out their lunchboxes the first month or so, Acorn's fine motor skills are a little behind, and that makes it an even bigger challenge for him.

One tool in our tool box is the PlanetBox lunch boxes I bought last year. Unlike many other lunchboxes in my stash, Acorn can open these on his own.

My lunch earlier this week - sandwich, salad, cookies

Being able to open his lunch box all by himself will be a huge step towards independence.

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.....

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?

Sensory Bins

So many things to write about, so little time - between work and NICU and daycare woes, it's challenging finding time to sleep! There are more changes afoot here, which I'll say more about when the plan is more clear, but for now, we're just muddling along. I still have to write about finally (after all the insanity this summer) getting Acorn out on the bike, and about pumping and breastfeeding, and about daycare too. Acorn is getting the stoma (hole) from his trach sewn shut next week, so maybe there will be time to write then.

I'm home with Acorn today - he's got Hand, Foot, and Mouth Disease. The pediatrician said he could go back to daycare as long as he was fever free (and since we know he got it there because half the class had it 2 weeks ago, that doesn't bother me), but the daycare said he couldn't come back if he was getting new spots....and with this morning's level of crankiness, there was no sense in even trying it.

Our homeschooling totschool/preschool work ground to a halt without the support of nurses over the last year, but there are still things I want to do with Acorn (and with Leaf),  so we're just going to move forward as time permits.

Over nap time, I put together our first sensory bin (and this post!). I'm hoping to do a theme twice a month for now, to give Acorn something interesting to do other than the TV - he's totally fixated on it, largely because of nurses who played videos instead of doing other things we'd offered up.

Our theme for the rest of October is Halloween?Samhain.

First, since I'm working on a budget, I started with a dish pan I've owned for more than a decade, and the last of our white rice (about 6 cups; we could use more for this in the future - I see a Costco run in my future).

I debated buying birdseed for this, but I'm thinking I'll do that for next month. I also thought about making colored rice, but I can't help but think that one of these days I'm going to want to put 2 colors together, and then what will I do, sort through them all grain by grain to separate the colors again?

I then got all of our little bits and pieces together for this theme:

There's also a pair of big tweezers going in here, and possibly orange and black pompoms if I can remember where I hid them. 

Finally, I threw it all together:

Not bad for a first attempt done with almost no planning, don't you think?

The End of An Era

Today is our last day of nursing (though our primary nurse has offered to sit with Acorn once in a while, and we've made arrangements with her to do so once a month so we can get out of the house). When Nurse J leaves at 7 am tomorrow, we're done for good. It's rather bittersweet - yeah, I want them gone. I want my house back. But there are all these little details.... nebulizer treatments and one medication that we almost never give. Night time wakings. Child care arrangements. At home arrangements for when he's sick. Lots of little things that normal families do all the time. The list is a little overwhelming, but it should be ok. There's no trach to suction. No g-tube to come out in the middle of the night. No need to turn the pulse ox on at all, really. Thursday, Acorn starts daycare. By himself. When we did daycare earlier this year, it took a whole duffle bag to be prepared for all possibilities, plus a bag for his cloth diapers. Now we're looking at just packing him a kid-sized backpack, plus his bag of diapers. And here we thought getting rid of the ventilator meant less stuff to carry.

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.

the EI saga continues

I sent Acorn's teacher a letter last week, detailing our concerns with her interactions with Acorn. We're waiting to see how things go now, but I'm still not sure she's really the right person to work with him, based on her experiences and way of approaching things.



She keeps asking how we know that he understands signs if he doesn't use them. By the same logic, do we expect that toddlers don't understand words they can't say yet? Then again, during the evaluation this past spring, she asked how we knew he was laughing if he made no sounds.  *sigh*

We finally got her to start signing with him, rather than trying to get him to only point at things (she's apparently got a lot of experience in teaching kids to use alternative communication devices, which is not what he needs, since Acorn is already trying to talk over the vent, and already signing). Right now, she wants us to document signs used and how he responds because she's just not convinced that the signs posted on his wall are signs he knows.

Parent-Teacher conferences are coming up soon, and I am insisting on getting her and the various therapists (including the speech therapist that can't see Acorn because he's too young) being there if I'm going to take the time to attend.

Early Intervention Woes

I'm trying to decide what to do about Acorn's IFSP (individual family service plan, the document that details what the early intervention folks from the school will do for Acorn and our family - when he's 3, we get an IEP, the school-age version of it).

Thing is, his teacher appears to have little experience with kids with medical issues. And it's just not working.

So....do I send her a note explaining our concerns, or do I just write a letter to the director of special services and complain and insist on changes? I'm starting to think that starting with the teacher is the way to go.

Therapy - a blessing and a curse

Scheduling, at our house, is a crazy crazy ride.

Since mid-June, Acorn has had 5-6 sessions of therapy a week. 2 physical therapy (PT) hours with the fabulous therapist from our insurance, 2 occupational therapy (OT) hours with the less-than-stellar therapist from the insurance, 1 PT session from the school's early intervention (EI) program (30 minutes only), and the same for OT from the school.

Add in 3-5 doctor's visits a month, plus a nap schedule typical of most toddlers, plus nursing, plus mom and dad working and occasionally having lives, and chaos ensues.

Don't get me wrong - any therapy Acorn can get is usually a good thing. He's behind on milestones because of his time in the hospital, and the only way he'll catch up is with this sort of intensive effort.  But still...it runs our lives. Every interaction, there's a voice in the back of my head wondering what his therapists would think of this latest activity.

And now, to add to the insanity, there's "school." Thanks to our pediatrician, Acorn gets all of his EI services at home, as a homebound student. This includes a whole hour every week with an early childhood teacher. Yes, that's twice as much time as the therapists...she's more important than them, as far as the school is concerned.

It seems odd to me (and I'm sure in the coming week's you'll hear more about our IEP/IFSP drama as I stir the pot trying to get something that works better than what we've got) - his two major deficit areas are expressive language and gross motor skills. She's not a speech therapist, and doesn't encourage him to vocalize. Acorn understands more signs than the teacher knows. So it doesn't seem that she's qualified to help on that front. She does a lot of playing with toys, but nothing that the OT hasn't already been doing. So right now, I'm trying to figure out what her purpose is in our lives, and why she's taking up our time. 

She's pushy about things she really has no knowledge of, like how wonderful it would be for us to meet other EI parents, or how Acorn should spend more time in his high chair.

I was ambivalent about eventually sending him to school....now I'm dreading it, and it's still years away. What a terrible way to encourage faith in the system