Thursday, February 27, 2014

Millie's 'talker'


It's about time I update you all on how Millie is doing with her talker.

In January I just could not wait to get it. I was counting the minutes until it arrived.

And then it got here and I opened it and I went to set it up ...

.. and I got totally overwhelmed and confused.

Because here's the thing. We live in northern Minnesota which we absolutely love and would have no other way. But living in the gorgeous northwoods, with its abundance of lakes and pines, great schools, wonderful people etc., it does have some drawbacks and one of them is that we don't have that immediate access to very specialized experts, like those who specifically have worked with 2-year-olds on assisted and augmented communication devices (AACs). We have gotten great support from our local contacts and Millie's therapists, don't get me wrong, but this new device, is brand new to all of us here.

So, for about a month, I kind of limped along with it.

Don't get me wrong, I got it set up and working. But I knew I hadn't set it up quite right and was offering Millie way too many options. So for the last month, I was focused just on the "reading" buttons, where she was slowly but pointedly taught that if she wanted me to read her books (her most favorite activity), she had to select the button every time that said for her, "Please read this to me."

We made great progress, she was connecting the idea of using the device to express what she wants and getting that delivered to her.

But, I'll be honest here, it certainly wasn't worth what we paid for device. Not then.

But now, things are thankfully changing.

Our "local" rep. came up Monday. She serves this whole region but is based in the Cities. She comes up every couple of months. I had plenty of time to sit down with her on Monday, express my frustrations and she very slowly, very helpfully not just fixed it, but more importantly, taught me how to fix it, how to set it all up.

The device utilizes "scenes" to offer a range of buttons. So, for example, under the "my family scene" (which has a photo of a family), Millie can select "dad," "mom," "sister," "dog," etc., etc.

This week I've spent a good several hours replacing so many of those standard pictures with pictures of us and changing what the device will say.

Millie now selects a button of herself: "Hi, I'm Millie. I'm 2 years old." Another button proclaims, "I live in Bemidji" (which, yes, to my surprise too was pronounced pretty darned close to correctly.) Now I just need a picture of Paul and Babe, but it's too darn cold to make it worth my while.

A picture of Lola, "This is my sister Lola. She's 5."

A picture of all of us together is, "This is my family."

Then you add in the additional options like "I love them" or "I'm angry with them" or "I want to color" and you can see, how eventually, she'll be able to say something such as "Lola, do you want to play legos with me?" or "Daddy, when it is it time to eat pizza?"

Add all that into the other changes we've made -- such as reducing the number of scenes we use at this time and the number of buttons available -- and I am so much more excited about this all again.

Under the reading scene for example I can take pictures of her preferred books. So it's not "Will you please read to me?" but "Will you please read me my Ariel book?"

Under food, it's not options for hamburgers and grilled steaks but now yogurt and goldfish crackers.

Slowly, finally, it's not just a device.

It's Millie's device.

And that makes me happy.
- Bethany :)

Monday, February 24, 2014

just words

Isn't it ironic...

I was thinking that this weekend, while communicating with Millie through gestures, signs and vocal inflection, that a person (me) so attached and enamored with words has a child who doesn't have verbal language.

I don't know how much I believe in a set path for people, for their lifespan. But I do believe that gifts are given to us to enhance our lives, to who we are or can become.

Millie is such a gift.

(And, yes, Lola too, as are all children I am sure, but I'm focusing on the Millie angle here today.)

Amelia, whose given name I'm trying to use more because I'm not sure she even knows it, has brought to my life a spotlight on the things that do matter, those that aren't maybe as important as I'd previously thought, and a whole new idea about how to "talk" to other people.

We went to a football game the other night, and they were making balloon animals for the kids. Millie asked for, and received, a giraffe and afterward I prompted her to sign "thank you."

The man immediately signed back, "You're welcome," and Millie, as surprised as I was, just beamed.

He spoke her language.

Without verbally saying a word.

That was cool.
- Bethany :)

Wednesday, February 19, 2014

tough stuff

It came out of the blue, without warning.

"Mommy," Lola said recently. "How come Millie is the only kid in her class who can't talk? Even the babies younger than her talk. But Millie is the only one who can't."

I was unprepared for this.

Millie was eating next to me, Ray across the room. He looked at me silently while I paused to consider the response.

"You know what Lola," I said carefully, watching both girls. "I'm more than happy to talk to you about that. We can sit and talk about this together. But why don't we wait until Millie is asleep?"

It wasn't to stall - OK it wasn't completely to stall - but I didn't want to talk about it in front of Millie.

Lola nodded, and moved on to another topic.

Last night, after gymnastics, I took her into her bedroom, sat on the floor and asked her if she wanted to talk about the question she asked earlier. She nodded.

"Do you remember what you asked me?" I started.

She paused, looked down at the floor and kicked at something random, apparently afraid that she was in trouble. I quickly told her that she was not in trouble, that it was never wrong to ask questions, but people can always choose to not answer them (it's the reporter in me).

In this case, I said, she was completely right to be "confused" (her words) and that Mommy and Daddy are always here to talk things out for her.

And thus began an incredibly draining 15-minute conversation. It involved a lot of me talking about how people have things they are really good at and that we all have areas where we need more practice. We talked about how everyone is different that is a really, really good thing.

As we got closer toward wrapping up, Lola looked and me and grinned, "Wouldn't it be funny if Millie woke up tomorrow and started talking lots and lots?"

I smiled.

"What would you do?" she asked.

I told her that I we would all stay home from school and work and we would all sit on the couch and just talk to each all day long, to hear about the silly things that Millie wants to talk about but hasn't yet figured out how to do so.

Lola got a little sad, "I don't think that will happen though. I don't think that will happen ever ever never."

And that was the only moment where I came a wee bit close to losing my composure...  But I didn't. And I talked - some more - about how Mommy and Daddy have every faith that Millie will talk. Maybe not lots and lots and lots right away. But hopefully someday... But even if she doesn't, that's OK too, that we'll figure out other ways - through signing, her talker, etc., whatever works - so she can communicate with us.

Lola nodded.

"Mommy," she said abruptly. "Can I sing you a song now?"

And then she serenaded me in French.

- Bethany :)

Wednesday, February 12, 2014

Millie day...

Before we moved into the house, life in many ways was much simpler.

We had just one kid, two pet geckos who were quite self-sufficient,and an apartment with landlords who took care of the garbage, snow and landscaping needs.

Because we lived about 15 miles from town, I would not often work split-shifts, meaning that if I had to cover a meeting at night (which back then was quite likely), I wouldn't go in until 2 or sometimes 3 p.m.

While I missed Ray (obviously), it gave me a lot of one-on-one time with a young(er) Lola in the mornings. We spent countless hours on the floor, building block towers and reading countless books.

Fast-forward five years, add in another kid, a cat, a dog, a house and a bunch of other random things, and things are much busier.

And I don't get nearly as much one-on-one time with my younger daughter.

On Wednesday last week, I decided to change that.

I took the day off. For no real big reason other than she needed to get her stitches out (more on that later) and I didn't really want to do the back-and-forth thing between home, work, daycare, and the dr. office. And, really, I have a healthy amount of PTO right now. Or I did, until she got sick this past weekend.

It was a great day. Everything was all about Millie and what she wanted to do. Which in our world is more of a rarity than we'd like to admit.She's the more easy-going daughter so Lola generally tends to dictate the bulk of our activities.

But not Wednesday. Then, we did whatever she wanted; she wanted to read books, we read books. LOTS of freaking books. I'm not exaggerating when I say that if I read one, I read forty-seven. She loves books. She wakes up signing for book time, she sees me at daycare and carries to me a book, she goes to bed begging for just "one more" (although now that she's learned just recently how to make "two" fingers, she is now signing for just "two more" instead.)

The only time I "forced" her to do something was when I decided to start baking so I brought her with me in the kitchen to be my little helper.

I knew I needed something for Thursday morning breakfasts and Millie hasn't had her most favorite muffins (snickerdoodle) in a few weeks.

She honestly started clapping and making "num" noises as soon as I placed one in front of her.

What a cutie.

She also played in a box for a while...

... organized some goldfish crackers...

... and tried on a hat.

We had a good ol' time.

It also was a chance to get her acclimated a bit to her new room set up.

See that pink chair on the left? She got it as a gift for Christmas and it prompted the room rearrangement. Because of course Amelia's chair must be in Amelia's bedroom. It is now her favorite reading spot.

So blessed, she is.

We all are.
- Bethany :)

Monday, February 3, 2014

Millie's ouchie...

Millie got her first (?) set of stitches Saturday morning.

It was Ray's turn to sleep in so I had woken up with the girls. We spent that first hour in the kitchen, just talking and eating breakfast together.

Everyone was happily chattering away. The girls and I were debating what we wanted to do on this "family day" (weekend day), with Lola quickly nixing any plans to go to the library for storytime.

"I don't want to leave the house ever," she insisted, sweetly asking instead if she could wear a Princess dress and play in her bedroom.

She's a smart one, that Lola. She saw me toiling over the grocery list the night before and the list almost spilled over to a second page. Since going grocery shopping ranks right up there with getting shots in Lola's view, she was ahead of the game, quick to make it well known that she would not be going with to get groceries.

Anyhow, I chuckled at that and figured that if we weren't going to go out -- which was fine by me! Ray could do the shopping later on his own... -- we could make a little mess here at home.

So I suggested the girls paint. A favorite pastime we don't do often enough.

So we got it all set up, with Millie on one side of the table and Lola on the other.

Both were having a great time. Millie, of course, took it a wee bit too far as she started painting her fingers and then the walls, but I got her mostly cleaned up and under control.

Later, as we were cleaning up, Millie started running back and forth on her bench -- the kids' side of the table -- ignoring my warnings to stop, and, yeah, you can guess where this is going....

... she slipped and hit her face on the edge of the kitchen counter.

Just as Ray turned the corner and walked into the kitchen.

Millie was shrieking and crying ... and bleeding. Lots of bleeding.

Five minutes of chaos ended with Ray getting Millie cleaned up enough to take her to urgent care.

An hour or so later and Millie came home with two stitches beneath her lower lip.

Yeah, she looks pretty miserable.

But she wasn't. She was just hungry at that moment, having come home expecting her lunch to be immediately served.

Really, she was a trooper and hardly cried at all. Ray said the dr. was incredibly impressed by her tough-ness and overall cooperative attitude.

She has yet to really pull at them or play with them or do anything with them. So they to be a non-issue which is great.

But I still feel sad for her.

Poor baby.

We got in Wednesday to have them removed...
- Bethany :)