Bobbi's job

 Just over five years ago I posted about how Bobbi had gotten her first "real" job (as in, not just a temporary summer job.) As we had hoped, it was a great fit for her. Last month marked her five-year anniversary with Kwik Trip as a Food Product Demonstrator (FPD)! She has gotten to know many of the "regulars" and they will come in looking for her. She's seen co-workers come and go, some because they were just looking for temporary work, and some because they've been moved to other positions or other stores within the company. She takes pride in being someone who sticks it out even on the tough days (and she's had days she's told us she's ready to call it quits, and the *only* thing keeping her from following through is that she doesn't want to be the one who just leaves!) Besides, it's nice getting a regular paycheck. 😉

For over a year she's been working with another agency that works with people with disabilities in job placement, not because she wants to leave Kwik Trip, but because she's been hoping to work closer to 30 hours a week instead of just the 15-20 that she was currently getting. That's been slow going. She is very uncomfortable with anything having to do with numbers, so anything that involves cashiering is out. Yikes! That *greatly* reduces her options. She can't carry things, so stocking shelves isn't an option. Her cognitive limitations make something like answering phones and directing calls beyond her. So, although she's a very personable young woman, with a definitely range of skills, they just don't overlap in areas that are easily marketable. Greeting guests and passing out samples is a great fit for her.

So it was pretty hard hitting when she learned a few weeks ago that Kwik Trip is dropping, company-wide, their food product sampling program. They intend to keep all of the current product demonstrators on in other positions, but mainly in jobs that Bobbi can't do! We're so grateful that her store manager is motivated to keep someone with Bobbi's company loyalty in the company. So, while she's not going to keep 15-20 hours, she DOES still get to work three 3-hour shifts a week putting price stickers onto muffins and crisp rice bars and doing some light cleaning of the surfaces that she is able to reach.

Here's Bobbi wiping the counters by the coffee machines.

However, the week after she learned about her FPD position going away, she actually had an interview for a similar position with Sam's Club! Her FIRST interview after over a year long process of looking! 

And she bombed it. Oof. That was a pretty big downer to her. She also has not learned to see the hand of God at work in the coincidences of timing the same way Matt and I have had over the years., which made the blow even harder to take.

What a joy to, a few weeks later, see the same position open again; she applied, and got another interview! She related afterward that the (same) interviewer was surprised to see her trying again, and told her that she admired her persistence, and was going to give her one shift a week and see how it goes, with the potential of picking up another shift if it works out well for everyone!

So, before her FPD job at Kwik Trip ended and she was down to 9 hours a week, she had officially gotten a second job. While she has not started there yet, she has been hired! What beautiful provision for her. 

And, unrelatedly, she got her ears pierced a second time. 

Krassi's Rings, part 5

 Being caught up on the garage blogging, here's a little bragging post on Krassimir. He continues to delight me with the creative ways he combines his favorite toys - he reminds me of an architect who has a distinctive style, but boundless creativity. With the limited pallette of "rings" (loosely defined - something with a roughly wrist-sized hole in it - often circular, but not necessarily - sometimes rigid, sometimes not) and triangles and soft animals (whether stuffed animals or squishy plastic), he pulls together endless combinations, changing them up every few days, but always with that same "vocabulary" that makes his style so distinctive.

For your viewing enjoyment, a sampling of the most recent ones. (If you care, they uploaded in reverse order of time, so the ones at the top here are the most recent, and then go back in time to last summer)

Look how pleased he is with me wanting to take a photo! He's so proud of his work.

Upgrading to a BIG stuffed animal! Lucky Snoopy...

Friends at church will save the insides of duct tape or packaging tape, and their kids will decorate the cardboard, and then bring it for Krassi!

Notice there's a ring in the bottom of the ring!

I am continually amazed at the resourcefulness of creativity of this young man!

Graduation, family photo, and two pieces of siding

 This was not the most productive week on the garage because Leah's commencement ceremony was this weekend! Congratulations, Leah!!! Not surprisingly, she is going to the University of Minnesota Nursing School this fall, something she is very well suited for. 

Amazingly, we got the whole family to go to her commencement (Owen is almost always not in town over the weekends, and doing "family" stuff is not Bobbi's thing - especially if it's boring! but both of them made it, and Mira's not in the hospital...) so here we all are!

As usual, our standards of what constitutes a "good" family photo are pretty low. "Is everybody present and visible?" is our main criteria for the last 8+ years! 🤣 Smiling? Not so big of a deal. Even looking at the camera? Also not required. Coordinating outfits?? Ha! That was so last decade! So all in all, I'm pretty pleased with this one.

And, because doing something like going out to dinner is complicated enough with our crew (especially since two of them don't eat by mouth!), we decided to just head back home for ice cream sundaes. Grandma can doze in her chair, Krassi can get *out* of his chair, Mira can get back in her crib, Reuben can nap on the couch, and the REST of us who appreciate ice cream all crowded onto the new front porch of the addition!

Even, better, the weekend wasn't a complete wash, as Matt and I had just enough time to get the first piece of vertical siding onto the entry...

...AND to cut and install the second piece! 

So, two done, and I'm not sure I can count how many more to go!

Last bit of news worth noting is that surgery that we're hoping Mira will eventually get to have is scheduled for this coming Tuesday, and she has made it this far without ending up in the hospital again!! We might make it to the surgery date this time!!!

A bit on Bobbi

 I'm grateful to all of you who have asked me to post. I've wanted to, but with the myriad of things waiting for my time, not everything gets done. :) But, the squeaky wheel gets the grease, right? And there's been enough of you "squeaking" to make this worth my time!

So, today is a little tidbit on Bobbi, who graduated from "Branch Out," which is our school district's transitional program for young adults with disabilities. She had quite an interesting tenure there, with all of the COVID lock downs and distance learning impacting much of her time there, but we made it through, and she had some beneficial experiences through her years there. She now has officially earned her high school diploma, and they had a nice, small graduation ceremony in the spring.

With Rose and one of her favorite paras.

Each student had a little framed description of themselves that they put together with their teacher for the back table to display next to their photo.We thought Bobbi's was pretty representative of who she is!

(She's making decent progress on her dreams, since Dad did get her ceiling fan installed soon after graduation! Maybe not the biggest of dreams, but achieved nonetheless...and much appreciated in our un-air-conditioned house!)

Moving forward from here, she's hoping to find another part-time job. She's still going strong at Kwik Trip as a Food Product Demonstrator, getting close to her two-year anniversary there, and although the 9.5 hours a week that she works can sometimes drag along for her, she is a faithful, committed employee, and is well appreciated on the job. She (and we!) know that she doesn't do well with too little to do, so we're hoping that a lead her job coach has on a job at Goodwill will turn into something real. I'll (hopefully!!) keep you posted on what comes of that. Ideally she'd be able to put in two 4-hour shifts or something like that, which would give her something productive to do almost every day.

Krassi at school

 He's a junior this year! 

I just have two short stories to share that relate to school (and photos above that have nothing to do with school, since I don't have school photos, but I DO have photos of him and Ebenezer hanging out. Ebby plays lying down on the floor just like Krassi way more than any of the other kids did! And in the above photo, Ebenezer is reading a book to Krassi...who is just about as interested as he looks! ☺)

Story one:

A week before school started for real was "start-up day" when all of the high school students had to go in at some point during the day and get their photo taken and pick up their schedules, etc. I had time to do it myself, but asked Owen if he'd be able to take Krassi...and he said he probably would. It was delightful to come home later and find that Owen and his buddy, B (a senior this year), had already been through to pick up Krassimir so the three of them could get their stuff taken care of. It delights me on two levels - first of all, that Owen's cool with bringing his atypical older brother along with him - and secondly that all of Krassi's school mates who were there at the same time got to see Krassi come in as a regular kid with a couple of other high school guys, and not with his mom. Even better was when Owen came home on the second day of classes and told me that B had texted him that morning saying that he was in class with Owen's brother - they have sculpture together!! 🤣

Story two:

This one came via email from Krassi's teacher this morning.

I wanted to send you a note because the most spectacular thing just happened! 

The teacher across the hall, Mrs. H, is in a wheelchair and she and Krassi (actually, I think you may know her from Mendota?!) anyways, they often bump into each other in the hall, race to the classroom, etc. It's lovely. 

Today he was looking at her and so I helped him scoot quicker out to her to say hi. I told her that he just got his new chair and has the extra handle so K can steer/drive with his 1 arm. I told K we'd have to show her sometime so she could see how cool it is. He then started to scoot away (I figured he was just done with us, lol). He crawled all the way over to his chair. I asked him if he wanted to go show her now and he did the hand slap yes, rolled over and we got him up. He then wheeled over to her, bumped her chair to get her attention and grabbed the handle and showed off being able to drive it. She of course told him how cool it was and he had the BIGGEST smile. It was so fantastic! 

Total day maker :)

 One of these days I've got to share his growing collection of Things in Rings. (For earlier editions, look back here and here.) He's definitely way outside the range of "normal" for a seventeen year old, but I'm so proud of the way he is figuring out more and more how to be the best Krassimir he can be. He has a contentedness with his life that many people I know could benefit from!

Baby steps

 

It's incredibly slow and cumbersome, and not at all a practical way to get around yet for Bobbi, BUT every gain that we've made has come this way: tiny, tiny, tiny incremental forward progress, and to have reached the point where her therapist wants her to practice this once at home between each session means that we're poised to begin to see some more rapid growth!

I don't think anyone has ever picture Bobbi being able to walk without any assistance, but THIS (crutches only) would be so crazy different from bunny crawling (like she did when she first came home before her surgery), the wheelchair, or ever her walker. And it's so exciting to see it getting closer!

Family vacation: Day 1

 First step was to bring Mira to her buddies at Crescent Cove. They do a *really* good job there of knowing the kids who stay and of caring for them while they're there.

Kisses goodbye, and she's off.

Next step: load the van! (AND the trailer!) We don't usually use all of the seats in Big Blue because it's pretty tight, but when we need to, we can do 3 (the wide one which used to be the old back row), 3 (the narrower one) and 4 instead of the normal setup where we have the narrow 3, then the 2, and then the four. With this set up, and Mira not with us, and Owen coming up a day later, we had room for the girls' friend, Hope. Here we go!

Our first step was at our dear friends, the Martins (if you've read this blog long enough, you'll remember Chad as the guy who came and helped Matt with all sorts of things on the addition!  (He's mentioned in this post and here are some of his kids at the bottom of this post! Oh - and one with a photo!) They moved away a little over two years ago and WE MISS THEM!!) This was our first chance to visit at their house and see their farm-in-progress, and they made room for us to spend the night.

All of the girls (except Bobbi) in one room!

Got a kick out of this - this is our old bathtub that we removed from our old bathroom before putting on the accessible bathroom! They're using it in an outdoor shower area he's creating.

A few couch cushions, and the trailer behind the four-wheeler worked to bring Bobbi (and the rest of us) on a tour of their property!

It was hard to leave the next day. These people are so special to us, and their home was such a welcoming oasis permeated by the love of Jesus. I hope we can make it up there again!

Our whole crew...and Hope. I just realized that we're almost all color coordinated! Pinks and teals and royal blue? You'd think we planned it!

This one just makes me smile. :)

And then we were off for Duluth, aiming to arrive there at noon...but that's another post.

more about the Bobbette

 Four and a half years ago we took our little family on a trip up north to the North Shore of Lake Superior.

In the background is Split Rock lighthouse. In the foreground is our means for hiking with a non-mobile child.

Perched on a rock

At Gooseberry Falls (which is wheelchair accessible until you get right down by the falls themselves)

...at which point Dad can carry down the rest of the way.

Another method for carrying someone who is not yet mobile!

All of us outside of the hotel we stayed at, which is made from converted railcars!

 

We've been talking seriously for the last year about doing it again, but this time around, it's a little more complex. First of all, Krassi is bigger than he was four and a half years ago, and though we still do the "sack of potatoes" carry with him a lot, it's a little tougher now than it was...and Bobbi doesn't work as well that way! Tsvetomira can stay with Crescent Cove, but we wanted some way to have both Bobbi and Krassi be able to be involved with the active parts of our days if we made the effort to take a family trip!

So, we researched, and found this, which is pretty much amazing in pretty much every way: the Joelette.

But the price tag was a little (significantly!) steep for us, particularly because although we have three kids who could potentially use it (Bobbi, Krassi, and likely Reuben some day, too), it's not like we go hiking every weekend!! So, we thought, can we rent it from someone? Nope - closest we could find is in Colorado, and just wasn't feasible.

So, we researched some more and found this, which is not as amazing: (link here). But it has a much more accessible price tag. But would it be worth it for the cost? No foot rest, and, more significantly, would really require ALL carrying, and not have the benefit of the wheel to roll along and support weight during easier/smoother stretches of the hike.

Months passed, and then we remembered that we knew someone (distantly) who makes custom bicycles!!! So we thought, why not? We sent him an email asking if he thought he could rig something up with the more important features of the really nice vehicle with a price tag more reminiscent of the not so nice vehicle, and he said...yes!!!

His family passed through the Cities on their way to Wisconsin last week and left the in-process "Bobbette" as they've named it, with us to try out so he can make any last adjustments before powder coating it (in Bobbi's color of choice - espresso - like her beloved coffee!!)

It works SO WELL. It's so well balanced that when you're just running it along on the ground, both the front and the back person feel like the other must be doing all of the work because it's so easy to work with. He's got a great cushion incorporated in as well as a nice secure harness. The footrest needs a bit of adjustment, but otherwise, we can't really think of anything that needs to change! It's so perfect! (And he managed to figure out a way to get it to fold down small, which was a feature we said we didn't need to have, but because it DOES fold, we can take it in the back of Big Blue without needing to hook up the trailer or take Owen's pick up truck!)

It's so easy to use that even Rinnah is sufficient to be the front "sherpa" when we're going on fairly straightforward terrain.

Here we are this past weekend down by the Mississippi River at a hiking spot (Pike Island) we've enjoyed in the past...but not ever with Bobbi! We paused a bit to throw rocks, so Matt's just holding it on his own. There's an option to flip the wheel back so it can sit stable on four legs when we're stopping for any length of time, but it wasn't worth doing for this short pause.

Set up and take down is pretty quick.

We managed to do a lift over some driftwood at the shore, and even to go up a rough cut flight of stairs. There are two mini-handles on either side of the chair, too, so if we needed to we could easily have four (or up to six, if each person took one handle) people to lift and move if/when the terrain requires.

North Shore, here we come! We have reservations at the same hotel for the first week of June, and we're really looking forward to an adventure. We're bringing Rose and her husband along, as well as our adult niece (and her two-year-old) to stay with Grandma who can't really be left alone anymore, and the girls' best friend, Hope, who we consider to be our seventh daughter. And probably our nephew (Owen and Krassi's age), because even though he's not really into hiking, he and Owen will enjoy the time together, and we've got the rest of the family anyway! (The two of them are our kids' only cousins on Matt's side.)

Go ahead and check out Randy's web page (click on his logo below for the link) - he's the one creating and fashioning the Bobbette for us!

meet the Bobbette...

 

...our new (in process) all-terrain hiking machine!

I'm not up to typing more now, but we're so excited about this that I wanted to share a little taste with you, and will get you the rest of the story soon...(er or later).

An 8-day 24-hour stay

 We've got our Mira back home. Crazy girl went and had a really bad nose bleed Sunday evening (which, if you may remember, is what triggered the pneumonia that ended her up in the PICU for a month three years ago). SO FAR her lungs seem okay. The fact that she's already on serious antibiotics for her UTI, and one of them is one that is also used for pneumonias has probably given her a head start on fighting off anything that may have gotten in there.

Matt and I both got to go down yesterday for a short visit, and I snapped two pictures that were meaningful to me:

First, notice how nicely her fingernails look with her hospital gown. Her home nurse did her nails a few days before she ended up in the hospital, and the color is just perfect.

Second, notice how pretty her hair looks. When Matt and I were down there Monday, her nurse was in the middle of rebraiding her hair.

I know I've mentioned this before, but toward the end of our pick up week in Bulgaria over four years ago, Toni, our adoption lawyer on the Bulgarian side of things, called me at the hotel and said, regarding Mira, that she didn't care what milestones Mira made or didn't make, she just wanted me to make sure her hair was pretty. I still think it's pretty fantastic that her nurses at Gillette have a similar frame of mind, such that taking time to braid their patients' hair is important enough that they're 1) interested in doing it 2) actually do it and 3) are allowed to take the time to do it.

One of our referral photos for Mira, taken in early 2016, I believe. Her hair doesn't look as cared for in this photo!

Krassi's collections

 I've written here and there about how Krassi just goes contentedly about his business every day, but over the last few weeks have been collecting some photographic evidence of what most of that business actually is. I'm hoping to expand the collection as time goes on, too.

Anyone who knows Krassi knows that he loves "rings" - bracelets, things that he can put his hand/arm through. As he's gotten older and bigger, things that he used to be able to put his hand through don't work anymore, and he's adapted in an interesting way. He also really has a thing for triangles. I can't explain that one for you! (Honestly, I think the arm/hand through a ring thing has a simple explanation, which is related to familiarity/self-stimming behaviors arising from years of putting his hand and arm through the bars of his crib. So it's fascinating to see him developing beyond that - not abandoning it necessarily, but broadening the experience.)

Behold - Krassimir's daily activity of choice for at least the last year, and possibly even longer if my memory is correct:

I chose this example as the first because it's such a classic example. Notice the critical elements: a toy with a hole in it - a ring/bracelet of sorts (bonus that it's a foam block, one of his favorite things for all of his years at home) - with a wooden triangle block inside of the ring.

Here's another:

This time it's a blue "wedgit" (just what it's called), with a green triangular foam block through it.

Followed by a used-up roll of tape with a wooden triangle inside:

And then the blue wedgit again, but this time with a squishy lamb inside. The squishy animals were a classroom present when he graduated from 8th grade. They were so loved by him that his teacher let him keep them at the end of the year! (You'll see them again - they make great triangle substitutes...)

Here we have a roll of duct tape with a wooden triangle inside. (You can see a red wedgit in the background, waiting.)

And this doozy, which is the green duct tape with the squishy lamb on top of a glitter bottle!

And this time, the red wedgit with three wooden triangle blocks.

See - there's three! (I just realized that in EVERY single picture he's wearing the same sweatshirt. Don't be fooled - the photos are from five different days - it's just the warmest shirt he's got, so apparently he wears it a lot!)

And then the squishy lamb in the yellow duct tape, with the squishy cow watching from the background.

There - this is another shot of the one I showed nearer the top, but you can see that he's wearing something else AND you get a view of squishy pig!

What I find so fascinating about all of these is the degree of categorizing and specificity that this young man has developed. He has distinct preferences, and yet the incredible ability to combine the pieces in seemingly limitless ways. For a person with a profound intellectual disability, there's actually an incredible degree of creativity and ingenuity that he displays as well as a skill that many people (with a whole range of intellectual abilities) lack - the ability to find satisfaction and contentment in his daily "work." There's a lot to be admired in that!