A Little Something Extra

Monday, October 8, 2012

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?

Friday, October 5, 2012

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.

Tuesday, October 2, 2012

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.

Monday, October 1, 2012

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)

Friday, July 20, 2012

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

Tuesday, May 1, 2012

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).]

Thursday, February 16, 2012

"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! :)