Sunday, June 9, 2019

Signing with a SATB2 Baby

This is my second time around trying to teach sign language to a baby with SATB2-Associated Syndrome. 

My First Approach
When Chelsea was little, I didn't start trying to get her to sign until she was about 18 months, and then learned a bunch of signs and tried to introduce them all at once. 

I would also forget to do hand over hand and modeling for a day or two, then try to squash a lot of learning into one day to "make up" for the forgotten days.

She did catch on after about a year, but many of the signs were jumbled together or not clear. I knew what she meant, but many people who could understand sign didn't know. 

Chelsea does use many signs- she had 800 at one point! So my first method DID work, and has helped her communication tremendously. But I still hoped for a quicker, more efficient method to teach babies earlier on. 


My Second Approach
With Lily, I started very slow. Starting at about 8 or 9 months old, I started signing "book" a couple times a day when I was about to read to her. 

At a year old, I bumped it up to modeling 3 times and doing hand over hand once or twice PER BOOK every day. We usually aim for 20-30 minutes of reading each day, so that is a LOT of repetitions!

And it worked! She started signing book consistently at 13 months (her age now). 

I chose the word "book" for several reasons:

1. It doesn't require much fine motor skill

2. It is easy for anyone to understand, those fluent in ASL or not at all. 

3. She LOVES books and it was very motivating to her

4. It is a  concrete noun. I didn't want to teach more abstract concepts (please, thank you, more) yet. You sign book, you get 1 book. Done. 

5. I can reinforce that sign every single time she says it. Some motivating words can't be reinforced every time (like ice cream or swim or Daddy)

Why This Method?
The key for the first couple words isn't to teach those words specifically. The important thing is that the baby is learning to communicate. They are learning that if they do a certain action, they get rewarded right away with awesome stuff. 

(Can I just emphasize that you MUST be 100% consistent here!!! You are teaching that an action has power!) 

The first day that Lily understood that if she signed book, I would stop everything else and read her a book, she signed that on repeat for about 5 hours. Every time we would finish, we would sign it again. And by golly I sat and read non-stop all that time! Thank goodness Daddy came home after 4 hours and took the last hour!
100% consistency!!! Dinner, bath time, anytime!

Your child is learning that they have power. That they can manipulate the world around them. They can make things happen and get what they want!

The longer I wait to introduce sign when my child wants to communicate a word/ want/ need, the more likely that my child would develop some sort of less desirable compensatory behavior to get what they desire (screaming, pulling things down, etc.) 

Moving Forward
Right now, Lily just knows the one sign- book. She uses it constantly, and she is clearly thrilled that she can get us to drop anything and everything to rush over and read her a book. She is getting her needs met!

We will continue to reinforce this sign 100% of the time for a couple weeks, then add in a sign that is TOTALLY different (but still easy to carry out and has a concrete meaning). We are thinking of adding on:

Up (we pick her up every single time she signs this)

Dog (give her a little stuffed dog and make the dog bark and pretend to lick her when she signs dog)

Water (we will slightly modify this to compensate for baby fingers not being as dexterous, but she will get to splash water or take a drink when she signs water. She loves it!)

Song (sing a song every time she signs song)

Eat (slightly more abstract, but she gets a snack every time she signs eat. We will probably have 2 or 3 options out for her to choose from at any time, then will eventually begin transitioning into 2 word phrases like Eat cookie or eat cheese)

The first 10 words are the most difficult and time-consuming to teach, because you aren't so much teaching the physical sign as you are the concept of communication, and reinforcing those signs every time. 

Dishes will get left undone, dinners will be PBJs for a while, but your child will be able to communicate!

Thursday, June 6, 2019

Staying Little Forever

As May turns into June, we all see graduating seniors go off on their new life adventures- starting jobs, going off to college, all those grand plans!

We attend parties and senior nights, and pat the backs of moms who worry if their kids will only eat Ramen now. 

I was at a party for a graduating senior when the mother of the senior gave a little speech. She spoke all about her child's accomplishments, how proud she was, and then "I just wish I could keep you little forever!"

I knew what she meant. I knew that she misses that daughter's sweet innocent childhood, and playing games of Monopoly and eating popsicles together on those carefree afternoons. Of the sticky hands and sloppy kisses and constant "I love you, Mommy you are the best"s. 

And I am sure I will think the exact same thing when my son gets older and prepares to go out on his own. 

But OUCH that sentence hurt. 

Because my child will be little forever. 

She will always believe in Santa Claus. She will always want to help cook but make more mess than food. 

She will always need constant supervision and care.

She will always want that bedtime story, and need her hand held in the parking lot. 

She will always want to play Barbies and do puzzles on the floor. 

And you know what? I don't wish that I could keep my child little forever. 

I wanted her to grow up, to graduate high school then college, get married and have kids, drive, travel, have a job and hobbies. 

I wanted to be able to ask her about her day and get an understandable answer back.

I wanted to have her call me from college and hear about how she used dish soap in the dishwasher instead of detergent and filled the kitchen with bubbles, and laugh about it together.

That was what I had imagined. That is not the future God has in store for Chelsea, but that is okay! Because really, I am the lucky one! 

I don't ever have to worry about Chelsea sneaking out of the house to see boys, or stress about is she is being a safe driver. 

I will always have a built-in ice cream buddy who loves being with me and likes books and going to the zoo! We will get to host stuffed animal tea parties while other moms wonder when their kids will ever call. 

The magic of Christmas will never fade over time. 

I will always have a child who is little. And even though it hurts more than I can describe sometimes, it is okay. Better than okay. I love my life and feel blessed to have Chelsea in it!

I know that when my son's time comes to leave the nest, I will sob and wish for those days back when he was little, because they really are sweet and I LOVE these days! 

I sometimes wish my daughters could grow up the way they are "supposed" to, and like it says in Welcome to Holland (below), the pain of that never, ever goes away. But life with them is beautiful, and I always get to keep that with me.

Welcome to Holland
By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...…

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.