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?

31for21: Church

(as you can see, I'm not holding up to the daily post requirements of the blog hop, but I have a double ear infection, sinus infection, and nasty sore throat).

A couple of years ago I posted about a statistic that showed only 10% of families who have a child with special needs attend church. I'm copying that post here today with some revisions. We happen to attend a church that has a fantastic ministry to individuals with special needs. Micah has had the same helper in his class since we first moved here 3 years ago this month. Susie loves Micah, and she is the highlight of every Sunday for Micah (and now every Wednesday, as she has also volunteered to help Micah through Awana!). Here's a photo of Micah with Susie when we went to the apple orchard together.

Anyway... we're super blessed! But not everyone is so fortunate. Here's my post from 2 years ago:


Okay, I don't know what % of American children attend church.  So I don't know exactly how significant the following statistic is: Only 10% of families with children with special needs attend church.  Why?

There could be many explanations for this statistic.  In some cases, it's probably the family's choice (not "religious," or whatever).  But I'm inclined to believe that the number would be higher if it weren't so hard.

Exactly what's "hard" about going to church?  Have YOU tried to lug your child's wheelchair in and out of the car all day long?  Have YOU had to check the levels in your child's O2 tank to make sure you can make it a few more hours before changing it out?  Have YOU had to mix formula (only available by prescription via mail order) on the road?  Have YOU had to get a child out the door who doesn't want to go somewhere because he's going to be ridiculed for the way he walks/talks/eats (or doesn't)?  Have YOU had to worry about how a nursery worker is going to deal with a feeding pump attached to your child?

Enter Sunday.  A day of rest.  A day to refuel.  And if you're a Christian, a day to worship.  Is it any wonder that families with kids who are differently-abled don't want the hassle of hauling everyone out of the house to go to church?  Especially if it is even more of a hassle when they GET to church. And never mind what happens when the Sunday school teachers make it clear that they consider a child with needs to be a burden. Or a distraction.

We are blessed!!!  We attend a church that has a very strong ministry to individuals with disabilities.  When we moved to MN last fall, we had been encouraged to head to two churches, both within 10 minutes of our house.  The first one we visited is where we had enrolled Nathan in preschool.  We headed for visitor parking.  Someone directed our car to a parking spot.  She used a walkie talkie to have someone come to the door to meet us and walk us to the childcare area.  The director of early childhood called in the director of the disability ministry and conversed with the pod leader for toddlers to determine the appropriate room for Micah.  It would have been really easy to just put him in the infants room with Matthew because they were both not walking at that time.

But I appreciate that they weren't interested in "easy."  They were interested in Micah.

So Micah was put in a toddler room (granted, with mostly new walkers so none of them could run over him).  But he stayed there all year as those children became runners.  And he can crawl about as fast as they run now. :-)

But my point is that they had Micah's growth in mind.  And so it is this fall as well.  As we approached "move up Sunday" (when the children move up a grade in Sunday school), I spent some time talking with the directors of early childhood and disability ministries again about how best to teach Micah this year.  There is a super sweet woman who had volunteered in Micah's toddler room last year who asked if she could move up with Micah.  She has now been trained by the disability ministry and she is Micah's Sunday school helper.  She is with him in the 2-year-old classroom during second service every week.  It's much more structured than the toddler room and it's very good for him to be with his peers.

We made the decision to have Micah go to a toddler classroom during third service (when we're in Sunday school) because I just didn't think he could handle two services without down time.  I was planning on picking him up between services and moving him to the other classroom.  But the sweet directors decided it would be a better transition for Micah if he didn't see us between services so Suzy is moving him to the other classroom for us.

All of this is possible because of people who have a heart to serve.  Sadly, not every church is like ours.  So to my friends out there who attend churches who don't have a disability ministry, my question is, "Why not?"  And what can you do to serve the body of Christ through serving families who might find attending church to be more of a burden than a joy?

Also, here's a link to another perspective from a fellow mommy of kids with designer genes.

What does YOUR church do to help families with children who might need a little extra help on Sundays?

31for21: Struggling through a diagnosis

I've been on the Down syndrome journey for about 5 years now. I have a HUGE extended family of fellow parents of kids with designer genes. And I think I can safely say this: the early days of the diagnosis, whether they be prenatal or postnatal, are very hard for *most* people. I do know of a few parents who quickly accepted their child's diagnosis and never looked back. But for the vast majority of us, the days/weeks/months following the diagnosis were fairly dark.

I believe that the reason behind the struggle is not necessarily the same for each person, though. For some, the struggle is because of a stereotype developed by past experience. Or the media. Or negative information provided by a doctor/nurse/geneticist. Or for some of us, we had idols in our lives that were exposed.

I confess... my idol was/is intellect. I've always placed a high value on education. Maybe that was imparted on me by others (family, teachers, peers, etc.). But ultimately, I *chose* to place high value on that. I worked hard to earn a full ride to a top business school in my 20's. While there, I worked in the admissions office and there were few prospective students more sought-after than individuals who were pilots in the military. Let's face it... to "make it" as a fighter pilot, you had to possess a lot of skills that the majority of us don't: leadership, quick thinking, high intelligence. So, though I feel the gentleman in the video below might be just a little on the arrogant side by stating that he has "superior genes," he's probably right.

Please take 14 minutes and watch this video. You'll get a glimpse into the heart of a dad who struggled big time and came through it as a shining example of a parent with a DEEP love for his child. Double click on the screen and you can see it full-size.

 (If you're reading this post in an email, click on the link to the blog and you can watch the video there)

The most emotional part of this video for me is when he answered the question about his biggest fear. "My fear is one day somebody calling her 'retarded.'" Yep. That is mine for Micah too. It breaks my heart, but people WILL make fun of him someday. I try to remind myself that typically-developing kids get mocked/bullied too. It pains me to think about it for all of the boys. But with Micah, oh my heart.

31for21: SUDS walk

The Step Up for Down Syndrome walk was held in St. Paul on Sunday. It was a spectacular day: 80+ degrees in MN is not common. I didn't do much in the way of organizing our team this year. Mark was out of town. And the walk always comes soon after Nathan's birthday.
But we did manage to assemble a good group in orange.

Micah's church helper, Susie, joined us this year, along with the owner of our favorite local toy store and her daughter. And our pediatrician brought her family. Our neighbors came. And one of Nathan's good friends and his family.

But see this next photo for an example of why we love our district's inclusion preschool:

This is Micah with his friend, Cate. She's the tallest in the class. Yes, they're the same age. I was so excited when I heard from Cate's mom that their family would be joining us for the walk. How amazing!

It took a while for her to find us, but Micah's para from school came too:

We couldn't convince Batman to wear orange.

Micah had to take some breaks. And he spent at least the second half of the walk with the iPhone.

Remember Gracie? Her family had one of the largest groups at the walk. Gracie died five months ago. Here's a photo of Micah with Gracie's four-month-old brother, Mickey.

It was really hot. So a lot of ice cream was consumed.

 All tuckered out

Thanks so much to everyone who walked and donated.

31 for 21?

Grab This Button

Pretty funny, right? I haven't blogged in months and I think I can do 31 posts for the 21st chromosome to celebrate National Down Syndrome Month? Hm. Time will tell. But I'll give it a shot.

So, what do you want to know about Down syndrome?
(Just an FYI... tomorrow's post will include photos of the Step Up for Down Syndrome walk that was held in St. Paul yesterday)

Bloggers sharing session

Here's my current view at the NDSC conference in Washington, DC. I'm in a room of current (and future) bloggers who have kids with Down syndrome. Will this help me get back to blogging? Time will tell...

Meanwhile, it's so fun to meet these moms in person!





- Posted using BlogPress from my iPhone

Gracie is with Jesus

After getting Nathan and Mark out the door this morning, I opened my computer and went to Gracie's CaringBridge site to see how she was doing. What I found made my heart weep and I couldn't breathe.

 

Early this morning (May 1st), our friend Gracie (aka Amazing Gracie) passed away at Children's. She was admitted to the hospital on April 21st with pneumonia and needed to be put on a ventilator the next day. She had some challenges, but she was improving. I had a chance to see her (and our buddy, Aidan, who was right across the hall after having heart surgery last week). Gracie's doctors took her off the ventilator yesterday afternoon. She was doing well. And then she wasn't. And then she died.

Amazing Gracie

Nov. 22, 2010 - May 1, 2012

Please pray for Gracie's parents, Carrie and Rich, and her big sister, Lylli (age 3), and her soon-to-be-born baby brother, Mickey (Carrie is 36 weeks pregnant).

[May 1, 2010 - I took Micah home from that same hospital after he spent two weeks in the PICU with toxic shock (9 days on a vent).]

"We'll Paint the Octopus Red" in Nathan's classroom

Have you read the book? Try reading it out loud. Makes me a bit emotional. Why? Let me tell you about the book.

In a nutshell, it's written from the perspective of a 6yr old girl about her baby brother who has Down syndrome. She kept asking her dad, of the wonderful things she had planned to do with her brother, which would he not be able to do? Ultimately, there wasn't anything she had planned for her brother that he wouldn't eventually be able to do.

Most of us enter this journey of Down syndrome with many people telling us what our child will NEVER be able to accomplish. We need the perspective of a 6yr old with the right priorities. Her plans with her little brother didn't include him becoming president. Or walking on the moon. I mean, how many of us are going to have "typically-developing" children who are going to accomplish those things? What infuriates me is that there are doctors out there who are STILL telling parents that their child with Down syndrome won't be able to ride a bike. Or go on vacation. Or live independently.

In the book, Emma was just looking forward to the simple things of having a baby brother. Would he eat fruit snacks in the back seat of the car? Would he play kickball? Would he go on vacation with them? One of the most difficult things for me to deal with when expecting Micah was my thought that Nathan was getting ripped off... that he wouldn't have a brother to throw a ball with, etc. But Nathan LOVES playing ball with Micah. He makes up fun games to play with him. If you ask him what Down syndrome means, he will tell you that it means they grow more slowly than other people. He doesn't care about extra chromosomes.

I read the book, "We'll Paint the Octopus Red," to Nathan's Kindergarten class this morning (I was the "mystery reader"). Then we did some activities. Here was my outline:

* Introduction

* Read the book

* Tell a bit about Down syndrome (we have lots of cells and you all have 46 chromosomes in each cell and Nathan's brother has 47)

* How does that make kids with Down syndrome a bit different from you?

    * Sometimes they have to work a little harder to do the same things that you do. I asked for volunteers to write their names on the white board. Then I put a thick sock on their hands and asked them to write their names again.

    * I had everyone in the class find a buddy. They put a marshmallow on their tongues and tried to say something the other person could understand.

* Even though kids with Down syndrome have some things that are different from you, they're mostly the same as you. (I asked them things like, "Do you like to play ball? So does Micah!")

* Though Micah might take a bit longer to do the same things that you do, he's more like you than he is different.

That's it. Not too hard. I got my motivation from Laurie.

Next time, I'll only do a few kids with the marshmallows because it was kind of crazy in there with everyone trying to talk at the same time.

Also, after the kids wrote their names on the white board, I asked if it was easier or harder with the sock on their hands. They said easier (because they're Kindergartners, and they think they can make everything easy). I then reminded them that it took them a lot longer to write their name as well with the sock on as without.

It was lots of fun. And here's the feedback I received in an email from Nathan's teacher today:

Thank you for reading to the class today.  We talked a little more about the book after you had left and I asked the class what they thought you wanted them to learn.  Several of them shared that we should be nice and kind to all people even if they are a little different in some way.  They brought up how Martin Luther King thought everyone should be treated equal and said that it was the same thing.  Thank you for sharing with them! :)