Monday, September 30, 2013

Once Upon a Bedtime Story...

Ever since our youngest was born, sleep has been one of our biggest challenges. After months and months of two steps forward one step back, and trial and error (oy, lots of error!), we can finally say we are making some progress.

Baby and Daddy still sleep on the couch.

Every night though, for about a month, Daddy gets her corner ready just how she likes it. Then she cries because she doesn't want to be apart from Mommy. But then he says its time for a story...

She quiets down, settles in and waits.

Then, every night, Daddy tells her a story using signs. They are usually about a baby, and a daddy, and going outside. And when Daddy forgets a sign or doesn't know one, he asks her...and she always knows, and shows him.

She listens, she smiles, and she signs along.

When they finish, Daddy says a prayer with her, lays her down, and covers her with her weighted blanket.

And for the first time in her life, she falls asleep by herself, without nursing, being held or rocked, or even touching one of us.

She amazes us everyday.

And I...have fallen in love with her Daddy all over again!



True story.

Thursday, September 26, 2013

The Good Times

What do we do here all day?
 
Well, on any given day one might find:
 
 
 
A baby who colors herself two-tone...


A  boy writing a poem on a roll of tape, about writing a poem on a roll of tape...


Fantastic architectural sculpures (this one by Grace)...

 
 
 
A toddler giddy with excitement at having more colored hangers added to her bath...



Throw in Grandpa arguing with Daddy about American Idol (which is really The X Factor right now), and telling him how much he hates the show, and would Victor like to come watch with him?
 
Somewhere in there we usually manage to feed our brood, convince them for the 9,457th time that they really don't want their permanent teeth to fall out before they have even reached adulthood and so should brush them, scriptures, prayers, and hugs and kisses for the big kids, and two parents who are very happy to say goodnight to them (someday we will do this for all three at the same time!).
 
Then wrap it all up with one or two episodes of Star Trek (which of course Grandpa won't watch), and the baby who occasionally is roused to her feet, raises her tiny arms up high, and shouts triumphantly..."DABO!!"
 
 
Yeah, these are good times, eh?!
 
Hope all of you are splendid too!

Friday, September 20, 2013

The Cutest Crooner in Town!

So way back in April, in this nearly-never-ending-post I mentioned that Kit used to hum and sing a lot. Pretty much every day, until she just sort of stopped. That was...sadder than sad.

But!

She seems to enjoy surprising us. So, just in the last couple of days, guess what I've been hearing?

A lot of this:

 



And by a lot, I mean all throughout the days and evenings. When she's walking, jumping, spinning, eating, playing, or laying, she's all the while humming or outright singing! She obviously understands what she's saying even if we don't!

It's crazy ADORABLE!

And I am ridiculously excited to have my Music Major back at the pipes!!

Wednesday, September 18, 2013

Conversation Vacations

My family cracks me up on a daily basis.

Here are just two instances that made me smile today...

Scene: I'm in the bathroom. I can hear bickering from the other side of the door, but I'm purposely trying NOT to hear what they are disputing. Then I hear Zak, now standing right outside the door,

"MOM! Grace is falsely accusing me!!"

I didn't answer. He went away, finally.



Scene: I'm sitting in the recliner with Kit. Zak is bouncing on the exercise ball, when he slows to a stop.

"Mom, I think it's about time you let Koda out of time out, don't you?"

"What?"

"Look at her!"



Well, I don't know what she did, but she sure looks guilty!

Tuesday, September 17, 2013

Life at Shutter Speed

 
 
 
 
 

Olivia always wanted an invisible leg...

 
 
 
 
 
 
ok, 1.) She sat there and let me do it!! 2.) She left it in for like seven whole minutes!!!!
 
 
A bag of limas under each arm...now where's that pot I wanted?
 
 
 
 
 
 
 
Terrific Tuesday to All!

Monday, September 16, 2013

Part Two...Learning Her Language

"How many signs do you think she knows now? A couple dozen?"
 
A good friend asked when we finally were able to get together after several months of crazy summertime life.
 
"Probably close to two hundred, if not more, actually."
 
Wow! Even I am astounded by her amazing capacity to see and remember so many signs. Even when she can't yet fully perform them.
 
Long before she lost her spoken words, I had taught her several basic signs. More, please, eat, all done.
 
Right about the time that it was clear that her words were not making their way back of their own accord just yet, my sister loaned us a baby sign language video.
 
It quickly became Kit's favorite, and though it took her several weeks to start to use the signs herself, when we used them, she clearly understood and would smile in agreement, or shake her head if it was not to her liking.
 
To my grateful surprise, our local library also had both seasons of an ASL (American Sign Language) vocabulary series called "Signing Time". Over the last six months we have had at least five of these DVDs out at all times. And whenever there is a word that we haven't learned yet, but need, we look it up online. As a family, we have all gradually learned, literally, more signs than we can count. And Kit understands them all.
 
Seeing Kit sign, is like watching a campfire. It is beautiful, warm, inspiring, and alive! She glows when she signs, sometimes you could swear that she even sends off sparks!
 
Her fingers are tiny, and she struggles to control and manipulate them. She uses a fist when she signs yellow and play, because she can't extend her pinky by itself yet.
 
 
Yellow!

 
But as soon as she discovered that signs meant words, her whole world lit up! She could ask for things. She could identify, classify, agree or object. She could tell us stories of events that happened and what she saw! She could be silly in a totally different way! I saw her spirit brighten, and she was happy!
 
I also noticed that she was more compliant, more willing when we asked her with both sign and speech, than just with speech alone. In fact, I discovered that in some instances, she preferred me to only sign.
 
She blew me away the day I discovered that she knew all the colors when I asked her using ASL. Any color I asked she would point to.  And she signs a large number of letters when she sees them in her books.
 

Signing Red!
 
 
For several months, she used a relatively small number of daily living signs. During this time she very slowly began also saying some words again. We were relieved when "dada" resurfaced. And absolutely melted when she would excitedly expel a garbled, but identifiable "I love you."
 
For months though, her speech was still very limited, maybe six or seven regulars, and then those that she used more occasionally. But her pronunciation had not recovered. It was difficult to understand her a lot of the time.
 
Then one day, she suddenly started using a whole slew of signs that she hadn't previously personally used much. Everyday for over a week, more and more signs, I couldn't believe how much she knew without prompting or having just watched a video!
 
And then, out of the blue, came the words! "Lellow, purple, bike, play, eat, no, (s)wing, (s)top!, cat..."
 
They tumbled out as she signed, with nearly perfect pronunciation a large part of the time. Everyday we hear more, and different ones. Though they don't always stick around for long.
 
All of a sudden, it seemed.  But it wasn't really. All this time her brain has been working furiously, trying to sort, organize, and open the pathways for her to get out of her mouth, what she has in her head and heart.
 
It has long been understood that whole body movement and gross motor skills can stimulate and facilitate speech, though the exact mechanics are still more of a mystery. And I have no doubt that the physical and visual nature of signing gave Kit's mind exactly what it needed to organize itself in order to command speech.
 
I am no expert, and I have no other experience in this department. I have no way of knowing if this would help or enhance the abilities of any other child dealing with similar issues. But I do know that it has helped us.
 
She still struggles with speech. I can tell that the words that flowed so easily yesterday, are simply not coming today. She engages in echolalia frequently. That is repeating, sometimes over and over something she just heard, often without connecting the word to its application. But for now, that's ok, all babies use this form of practice speech when they are learning to talk. She might be doing it more intensively, and more often than most, but we are happy to work with it.
 
I went through a period of time where I wasn't sure that she was going to speak beyond just a few basic words. I didn't think she would be non-verbal forever, but I couldn't be certain how long, or to what extent she might learn to verbalize her thoughts, and needs. It was a sad and scary place to be.
 
But, Victor and I were both determined to do whatever we could to help her communicate as much as she possibly could. And if that was through signing, then we were here to learn it with her, though we are far from fluent.
 
From a medical standpoint, Kit has not suffered any technical speech delay. And we have many ways yet to see which areas her autism is going to challenge us. But it was ASL, in a way, that even lead us to a diagnosis.
 
It was after one of Zak's appointments, that Dr. N was chatting with Zak and I, when he told her that he had learned the alphabet in sign language.
 
After he showed her, she asked if he was learning it for school.
 
"No, my sister can't really talk, so we have a bunch of videos that we are using to teach her to use sign language. She knows a lot of signs now!"
 
Dr. N sat down next to me, and offered to see Kit, and see what, if anything, she could do to help. (She had previously recommended we look into Early Intervention first, since she didn't typically see kids until they were closer to six or so. But Kit didn't qualify for E.I. because she wasn't "significantly delayed" in at least two areas.)
 
I don't remember if I actually hugged her, but I know I felt like it!
 
Less than a month later, Victor and I ran down our long list of concerns, and upon leaving, had a diagnosis of Autism Spectrum Disorder, and a referral for Early Intervention.
 
Maybe, if we had never taught her signs, she would have been so frustrated and anxious that she would have continued to regress, thus qualifying for Early Intervention that way. But what an awful price for her to pay along the way to getting "help". Even if that "help" would have happened a little sooner.
 
No thanks. I prefer to see her sparkle! And I love to feel her shine!
 
 
B for Brown!

 
Someday we may get through the day without ASL. And that will be where we are then, though it will be a tad bittersweet. But I don't dwell on that much. Because, right now, this is where we are, today. And this is what we do with her. For her. Because of her.
 
And because, right now, on the days when her mouth just can't form the words or all that comes out is garbled, she is far from speechless. Oh no, for in many ways, her first language is that which she found in her precious, perfect, powerful...
 
hands.
  

Part One...Loosing Her Voice

"More."
 
This is the first sign I have taught all my children, including ones who weren't mine, but spent time in my care.
 
This sign is a priceless tool to a baby. It is one of the most powerful gifts a parent or caregiver can bestow. Especially, since babies develop control of thier hands much earlier than the numerous muscles required for speech. But their minds develop even earlier! They can understand even sooner.
 
That one little word lays a foundation for back and forth conversation. Reduces both the child's as well as the caregiver's frustration. And it teaches the child that there is a way to communicate that allows him/her to remain more in control emotionally. This is very important because no one really likes to feel out of control.
 
°°°
 
Have you ever lost your voice? Did it make you feel somewhat insecure? Or even occasionally panicky?
 
Likely, you were able to make your needs known through writing, texting, or some similar means. But imagine if you couldn't write...
 
Imagine having full understanding of what is going on around you, including nearly everything being said. You have the desire to respond, to participate, to share. But each attempt you make fails. In your mind, your thoughts are clear, but what makes its way out its either silence, or garbled.
 
Might you be inclined to tantrum now and again?
 
Finding one's voice doesn't always mean with sound. And the ability to speak is not equivalent to mastering language or communication.
 
°°°
 
Kit had many words. More than the average 4, 9, 11, and 13 month old. These were the ages we heard major language developments. She also had a keen way of understanding things that had never been specifically taught. She observed intently, yet we didn't always notice, that is until she would perform some skill that was considered unusual for her age or developmentally early.
 
I don't know precisely when it happened. Or exactly how long it took. But one day, when she was fourteen or fifteen months, I realized that she was very quiet. And that she had been for a while. Her music was gone. Like when a cd stops, but you don't notice right away because you're absorbed in your task. I started paying close attention then though.
 
At her eighteen month well child visit. I stopped at the question that asked if she could say at least six words.
 
I thought carefully.
 
I checked yes. Because, after all, I've heard her say much more than six. Only a few short months before we had listed at least eighteen for the nurse practitioner.
 
Perhaps, technically, that was a correct answer. On a really good day, maybe she could have said six.

But she didn't.
 
She wasn't.
 
She hadn't been.
 
I told the nurse (we didn't see the practitioner that day) my concerns, and she blew them off. "She's only eighteen months. She's really still just a baby."
 
But I knew that wasn't it.
 
Still, I told myself not to overreact. That I was doing just that.
 
But I wasn't.
 
In a timespan of less than two months, Kit lost a vocabulary of well over a dozen words, several combinations, sentences of three and four words, consonant blends, multiple syllables, and enunciation.
 
At eighteen months, when I checked that box, all she really could say, her whole vocabulary, was three words.
 
Mommy, uh-oh, and, hey.
 
Those were the only consistent words I had heard for months. Others very occasionally emerged for a moment, sometimes even a day, but then disappeared again.
 
Even "daddy" was gone. There was no "dada", or even "da". No matter how excited she was to see him, she couldn't say it.
 
She still babbled, and emphatically gestured as she did. I saw that as a good sign. And she still understood nearly everything we told her. But she was changing. She was easily frustrated and anxious.
 
There were moments when tears welled up in my eyes, as I watched her ever-intelligent ones searching my face for understanding. Trying to convey what she so clearly knew in her mind.
 
I knew, no matter what anyone else said, that I needed to give her...
 
"more".
 
 
 
...to be continued...

Thursday, September 5, 2013

Sensory Bin #3

We haven't had a sensory bin for a couple of months now. Mostly because I just didn't have the energy to supervise or sweep up beans eighty times a day.

But, it was noticeable that Kit missed it. I hadn't realized how many times a day/week/month that she actually occupied herself with it, quite happily, for good chunks of time. Without the bin, those chunks of time were harder to fill than sweeping up beans eighty times a day. It is a very soothing activity for her as well. Today she leaned in over the bin and massaged the beans up and down her belly. She so wanted to be swimming in dry beans!

Despite my low tolerance for sweeping over the summer, I did keep the bin in mind, and anytime I was at the dollar store, or Target, or Wal-Mart, I always rummaged through the sale racks for items that can be used in our bins. And I found many wonderful treasures, which I store in a special box to pull out and add to the bin as needed.

Kit has been especially passionate about colors and shapes lately, so that seemed a perfect theme for the bin. Here's the basics:

2 bags dry black beans (1 lb bags)
1 package of assorted bubble wands
1 package of foam monster stickers
3 pages of smelly stickers, 1 ea. of apple, orange, and srawberry
Various cups, lids, funnels, etc.

It has been a big hit. Kit loves pulling out the bubble wands and proudly announcing the colors, either in word or sign.

"LELLOW!!!"

And since the wands are different shapes, she is doubly happy. But nothing makes her more mellow than sifting the beans through her fingers. Over and over.

Until she throws them on the floor.

And I have to sweep.

Again.