31 for 21... Hail Mommy, not so full of grace

Okay, so Micah is adorable. And sweet. And making lots of progress in lots of areas.

But sometime over the summer, he decided to start throwing things. Not just balls. Everything.
(I think it started with a fine motor skill game of throwing pom poms into a tub, but I digress.)

Unfortunately, many people think it's cute (see Napoleon blog post).

So they encourage it.
Example: His buddy at church met us in the hallway, and Micah said, "T___! Time to throw blocks!"
Yikes.

(okay, they were cardboard and to the best of my knowledge, he hasn't hurt anyone)

So he knows better than to play this game with ME. But apparently he's been throwing some things at school too.

Enter Wednesday night at church. The boys go to Awana (Bible club) at a small local church and it's fantastic! We love the people there. And they love Micah.

There's a new kid in Awana this year who also happens to be in Micah's preschool class.

On Wednesday night, I was talking to some of the lovely teachers in the Awana Cubbies class. This little boy kept interrupting and saying, "Micah throws toys." At one point, I responded, "Thank you for telling me" and hoped he would just leave my adult conversation.

As I was leaving the room, he decided to again tell me that Micah throws toys.

Not so grace-filled response: "Yes, I know he throws toys. And what do YOU do that drives YOUR mommy crazy? Is it tattling, perhaps?"

31 for 21... Napoleon

Napoleon

That is Micah's nickname.

The child can be super sweet and cute.

Or he can be Napoleon. Evil dictator. One of short stature who delights in telling others what to do.

It happens often on the playground. And most kids will play along for a while. He tells them where to stand and when to jump. And they do. Because he's awfully hard to resist. Until you want to resist. And then you get this super hoarse yell of "No"!!!!!

This was charming Micah telling the firefighter that no, he did not want to get down yet.

We were at some dear friends' house tonight. Their 8yr old finally cried uncle and asked us to take Micah away. When Micah finds something he wants to do, he wants to do it over. and over. and over again. The boys got sick of throwing stuffed animals. Micah, however, rarely tires of an activity where he can throw something and make you go get it.

Can you picture the scene? Cute for about 10 minutes, but very tiring after 30.

Bless him.

31 for 21... Micah's broken femur

Micah broke his femur on Easter Sunday 2011. He was in a spica cast for six weeks and a leg immobilizer for four weeks. It was rough.

It's been 2 1/2 years. Last year's x-ray showed his leg quite crooked (knock-kneed). The line from his hip to his ankle should go straight through the knee socket. But his line was completely outside the socket... didn't even touch it. His gait was significantly affected. We put him back into Sure Steps (ankle/foot orthotics, but made of much more flexible plastic than traditional AFO's, with a cutout in the back of the ankle to allow for greater ankle motion and on the bottom, they stop before the ball of the foot to allow for toe push-off).

Yesterday, Micah saw an orthopedic surgeon for the first time since we moved to TN. He was fantastic. And Micah's leg looks MUCH better than it did a year ago. The femur will never be straight. But the leg length looks great. His hips are sitting in a position that you would expect in a 3yr old, not in a 5 1/2 yr old, so we'll be watching that.

 

The x-ray was marked up a little. The only thing that we really have to watch in the future are his hips. His hips haven't rotated the way they should by this age. His new PT (whom I really like) has given us some good core strengthening exercises and that might help a little.

About 5% of kids with Down syndrome have significant hip issues. Here's hoping Micah is part of the 95%.

31 for 21... Cognitive differences

I received the following question on my Facebook page, so I'm answering it here:
"What are the differences mentally between a DS child and a non-DS child. Are they able to learn the same things?"

Great question!

Micah started preschool in the fall of 2012 at age 4 knowing the following:
* uppercase letters
* lowercase letters
* phonetics of the letters
* shapes
* count to 20
* colors 

This came home from school on Tuesday

There are plenty of kids who start Kindergarten who don't know those things. Micah worked hard to learn those things. But in the right format, those are the things (rote memorization) that are "easy" for him.

Kids with Down syndrome can learn most everything that a "typical" kid can learn. But it might need to be taught differently and it might take them longer to learn it.

The biggest challenge for individuals with Down syndrome is that they tend to be deficient in their short-term ("working") memories. An example: When picking Micah up from school, if you ask him what he did at school, he usually cannot tell you because he truly cannot recall. However, if he is presented with two options, i.e. "Did you learn about apples or balls?" he can usually tell you.

"Executive Functioning" is the umbrella term that describes an ability to adapt and process goal-directed actions. That is a significant weakness in individuals with Down syndrome. Their processing speed tends to be rather slow. This is probably the primary reason why most individuals with Down syndrome are not able to get drivers' licenses.

Micah, like many kids with Down syndrome, learns best when taught with visual and tactile cues. He will likely learn sight reading before phonetic reading. Of course, you and I read sight words and not phonetically, unless faced with a word we haven't seen before. So learning sight words is a practical skill.

Hope that helps shed some light on learning.

31 for 21... We held Micah back from Kindergarten

Yes, it's true. We "redshirted" Micah from Kindergarten this year.

First day of school 2013

There were a number of reasons for our decision, some reasons being more important than others. Here's our list:
1. Fine motor skills - Micah's sensory aversions affect him in lots of areas, but none more prevalent than his lack of fine motor skills. We did focus on this area this summer. I hired a PhD student in occupational therapy to work with Micah part-time this summer. He made some great strides. His OT at school sends home some of his work and the staff at school is very impressed with the strides he made. He can now independently write his name. We'll work on other letters during this school year.
2. Feeding skills - I'll do a full post on this in the future. I would like Micah to be able to make it through a full day of school without needing additional water pushed through his feeding tube. He does take all of his nutrition orally now (Pediasure or smoothie at each meal, along with some sort of pureed food).
3. Independent toileting (potty trained this summer, but going back to #1, he still can't pull up his pants, and he's still too small to pee standing up)
4. Size - Still in size 2T pants. You can see in yesterday's photo of all three boys that Micah is now almost a head shorter than Matthew, who is a year younger. I do worry that he will function more like a "class pet" than as a peer.
5. Naps - Micah still sleeps 90 minutes every afternoon. Tennessee does not offer 1/2-day Kindergarten.

Academically, Micah is prepared for Kindergarten. He has known all the shapes, colors, counting beyond 20, uppercase and lowercase letters, phonetics of all letters, etc., for over a year. But his working memory stinks (that's another post for another day).

The biggest downside of holding him back is that now he and Matthew will be in the same grade.

I'll post about his preschool on a future date as well.

31 for 21... We moved!

Okay, it's been a year. Time for some updates, I guess.
Just a reminder... 31 for 21 means that I'm blogging for 31 days for the 21st chromosome.
 

First day of school 2013: Micah (5), Nathan (7), Matthew (4)

First: We moved from Minnesota to Tennessee in January. The move has been most difficult on Nathan, who just turned 8 last week. He really misses his friends and doesn't have a "best friend" here yet. I think he's hoping to find a carbon copy of Jacob in MN. But he does have a neighbor friend who he spends a lot of time with (who also has a younger brother who definitely IS Matthew's best friend) and we just love that family.

From a Micah perspective, this move was much easier. For example, we haven't even seen a cardiologist or orthopedic surgeon since we moved here. He's at annual visits for those specialists. And he's walking. And not on a feeding pump. Quite different from the move when he was not yet two.

More updates to come. Anything in particular you want to know?