What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Wednesday, January 29, 2014

Thoughts on Sign Language, Speech and Communication

Ben knows many, many signs.  I really should make a list.  I know he's got more than 100 words, but I haven't bothered writing them all down.  Maybe he has 200!  Or not.  :)

For a long time, it seemed that Ben would rarely begin a conversation himself.  He would respond to questions (ex. "Would you like something to eat?") with appropriate signs ("banana," "eat," etc.).  He clearly understood what we asked, but he rarely made the first move.

Lately, he is using sign language more effectively - and he is initiating conversations.  

When we were sitting in the living room on Friday, Ben pointed out the window and signed "outside.  slide."  Of course, it was 32 degrees, so I told him that we could not go slide outside, but I loved that he requested something that wasn't food or Signing Time.

If I'm attempting to put him in his crib (and he doesn't want to go to bed), he will point at the door to the bedroom, signing "Go.  Please.  More."  

He signs "book" when he's ready for storytime.  He will often sit with a book and sign all the words to himself.

Corrie loves to play with Ben, but she often provokes him.  They will play in some rough and tumble way, and he will communicate his displeasure by grunting.  She won't stop, and then he responds by pushing her.  Now it is not right for Ben to push or hit, but I can see how it frustrates him when he is "telling" her to stop and she continues the behavior.  We have had several conversations about how Corrie and Evan have to pay attention to the ways Ben communicates - even if he doesn't have spoken words yet.  Well, the other day, she was messing with Ben, and he grunted a couple of times, then he stopped, looked at her very deliberately, and signed emphatically, "STOP."  It was great to see him use a sign at the right time, in the right context.  And she knew what he meant.

I hope and expect that Ben will learn to talk.  He can make lots of noises (you should hear him when he "talks" on the phone) and he moves his lips into the appropriate places for sounds (Mmm, Bbb, Ppp), but he hasn't managed to connect the sounds with the lips yet.  He just got tubes in his ears, so I'm hoping that we'll see an improvement in his speech.  I don't hear him use many consonants, and I wonder if that has to do with his hearing or fluid in his ears.

Lately, I've been thinking about preschool.  Ben turns three this summer, and he will start preschool in the fall.  In my ideal world, he will attend a local church-based preschool 2-3 mornings a week, and go to the public preschool the other 2-3 mornings.  I have great confidence in Ben's ability to be part of both preschools.  His receptive language is on track for his age, so he should do fine following directions for circle time, songs, crafts, etc.

I'm not sure how preschool will work with Ben's signs.  I want him to be able to communicate with the other kids and teachers, and the best way for him to do that right now is through sign.  However, I also want him to talk.  I wonder how that transition from signing to speaking works.  We use sign and speech together, so I'm hopeful that he will do the same thing - learn to say the word while he makes the sign.  

I spoke with a mom of a teen with Down syndrome the other day.  Her child has wonderful speech, but even so, the mom said that that her daughter will sometimes get frustrated because she will think the words faster than she can say them.  

It is easy to think of speech as an indicator of intelligence, but I begin to understand that it is not.  Low muscle tone and poor motor planning can create a physical barrier between the words in the head and the words that come out of the mouth.  

I want Ben to be able to communicate in a meaningful way.  Right now, he does.

Sunday, January 26, 2014

Weekend Update (mostly Evan)

This was a big weekend for our family.  Emmett and Evan share a birthday: January 24th.  On Friday, Emmett turned 40 (!) and Evan turned 9.  

We celebrated all weekend long.  On Friday, Emmett and I saw the second Hobbit movie while the kids were at school.  A sweet girl from our church came over to hang out with Ben while we had our matinee date.  Immediately after the movie, I stopped at the elementary school to pass out cupcakes and juice boxes to Evan's class.  

Evan's party was Saturday afternoon.  Emmett managed to borrow Minecraft accounts from several friends and family members, so that Evan and 10 of his closest friends could play a massive Minecraft game in one of the university computer labs.  They had a GREAT time.  We took a short break for pizza and ice cream cake, and then they dove back into the computer game.  Afterwards, several parents hung out on campus while the kids ran around playing freeze tag.  I think this was the easiest party ever ... and now I have several elementary school boys asking me about when they can have another game day.  We might have to make this a regular event.

Emmett had his own game night on Saturday.  He played XBox online with several friends from around the country, and they played until after 1 a.m.

On Sunday, we finished the weekend by ordering Chicago-style pizza from a local restaurant.  It was yummy, but not quite as good as Lou Malnati's or Gino's East.  :)

* * * * * * * *

It's hard to believe that Evan is nine.  That sounds so grown up!  Only one more year until double digits.

Things I want to remember about Evan at this age:

(1) He loves to read!  This year, he has devoured the Percy Jackson series, the Chronicles of Prydain by Lloyd Alexander, and he's just diving into Harry Potter.  I loved reading when I was a kid (and I still do!), so his fascination with books delights me.

(2) He is a Two Square and Four Square fiend.  I don't remember playing these games at all, but they are all the rage in our neighborhood.  The kids play Two Square or Four Square at recess, and then they play in our driveway for hours after school.

(3) He still loves hot sauce.  He douses his rice, eggs, tortilla chips, etc. with Tabasco or Louisiana Hot Sauce every time he eats.  I worry about his stomach.

(4) He roots enthusiastically for the Seattle Seahawks.  We will be a divided house when the Seahawks and Broncos play in next week's Super Bowl.

I have more thoughts about the person that Evan is becoming - his commitment to training and practice (in math, sports, and more), his sense of humor, his growing friendships with kids at school and in our neighborhood, and his strong sense of justice ... but all those things are more difficult to explain.

I am thankful that I get to be his mom.

Tuesday, January 21, 2014

Blog Hop: A Truth, A Tip and A Photo

Truth:  I'm not sure what truth to share here.  Do you want facts about Down syndrome?  Here's one: 30-50% of individuals with Down syndrome have a congenital heart defect.  Ben has a moderately-sized ASD - an atrial septal defect.  It's a hole between the two upper chambers of his heart, and we will probably eventually have it surgically corrected.  When Ben was born, I worried more about his heart than anything else.

Tip:  Join a local group.  When Ben was first born, I didn't know anyone near me who had a child with Down syndrome.  I found a lot of information and helpful advice on the internet, but I felt very isolated from the people around me.  Now I know several great families in my town (and even in my neighborhood!) who have children with Down syndrome.  We go to playdates and birthday parties together.  We share advice about doctors, therapists, schools, etc.  I love that my kids will grow up knowing people of all ages who have Down syndrome.

Photo:  Ben likes to help with the laundry.

Sunday, January 19, 2014

A Few Days Without Daddy

My husband has been out of town for a few days.

He doesn't travel often, so when he does, the kids and I bumble around a bit.  We miss him.  

This week, we have eaten lots of chicken nuggets and fries, frozen pizza, popcorn and M&Ms.  The kids also ate fruit, but I'm honestly not sure if they've even seen a vegetable since Tuesday.

On Wednesday, I took them to school ... late.  I was overly ambitious when I made breakfast - scrambled eggs and toast.  By the time we got to school, the teachers and crossing guards had left their posts and there were no other cars at all in the dropoff lane.  Oops.

Wednesday afternoon, Ben had to see the ENT before I pre-registered him at the hospital for ear tube surgery.

Thursday, Ben had surgery to put tubes in his ears.  The procedure itself was simple and short, but I was still nervous.  Anesthesia!  Fortunately, my friend Beckie came to hang out with us at the hospital.  And Ben was a rock star.  In and out, mostly happy.  The nurses kept saying how cute he is.

We picked up lunch for the big kids and met them at school.  They both enjoyed showing Ben off to their classmates.  Evan's class know Ben pretty well; they have seen him at school for programs for the last 3.5 years.  Corrie's classmates got to meet him for the first time.  Ben basically spends his time at school crawling or walking around the gym surrounded by a dozen other kids, who are all trying to give him a high five or throw him a ball or something.  He's quite popular.

Our other daddy-less activities included: two Star Wars movie nights and the Run or Dye 5K.  (And a couple of facetime chats with Daddy, Gamma, Papa and Auntie Jen).

Originally, I thought I would run the 5K with Evan.  He loves to run, and I didn't think he would have any trouble doing 3.5 miles.  However, I didn't realize that Emmett wouldn't be there to watch the other kids ... and then I did absolutely no training after one initial run with Evan in early December.

So ... I walked with Corrie and Ben.  Evan ran ahead and finally walked us for the last kilometer or so.  

Evan felt that dodging the color would demonstrate how fast he was, so he tried to avoid the dye as much as possible.  The blue guys got him the most.

Corrie got lots of color.  After our first dye-ing experience, she sighed, "Mom, I got a LOT of color thrown at me.  It's because I'm so adorable."  No self-confidence problems here.  

Ben ended up with more color than the rest of us.  Every time we went through a color station, the volunteers would squeal, "A baby!" and gently throw color at him.  It occurred to me during bath time after the race that I might should have protected Ben a little bit more.  He wasn't bothered at all, but his ears are still tinted blue and yellow.  Maybe it wasn't a good idea to throw powdered dye at someone who just got tubes put in.  Live and learn.

All in all, we survived pretty well without Dad.  We failed on healthy eating and boy did I get impatient at bedtime, but we did manage to navigate one surgical procedure AND a 5K run/walk.  I'm satisfied.

Thankfully, Emmett arrived home this morning, and we have been relishing his attention all day long.  He has danced with Corrie around the living room, listened to Evan recap the latest Minecraft adventures, and shared his dinner with Ben.  We watched football and napped on the couch.  All is right with the world.