31 for 21, Acceptance

This post is for the mother of a child with Down syndrome...maybe you just got your child's diagnosis.  Maybe you got it a while ago and are just now ready to search the internet for more information.  

I just want you to know that I felt like you do once.

Like a billion years ago (or was that just 4?) I thought life would never be the same.  And I was right.  It hasn't been the same.

But who wants life to stay the same?  Staying the same means you're not growing.  Life isn't about never changing.  Right after Chase was born, if someone had told me that, I would have said, "!*&**! you and your  growing- I like the same, the usual, the boring.

I just didn't know how good different could be.

I searched the internet to find moms with blogs about life with Down syndrome.  How different is it?  What can I expect?  What am I in for?

So, if you are searching, and you find this:  It's okay.  It's gonna be ok.  It's gonna be great, in fact.  You'll see.

Happy 31 for 21 :)

31 for 21, Jack-O-Lantern

Ian carved our pumpkin this year.  The others missed out, and I feel bad about that.  Except that they would have liked it for 30 seconds before moving on to another activity.  We did it at nap time today, so Ian got to take his time and have our undivided attention.  That's nice, too.

 He made me take this photo, and then told me, "Type next to it: This is when he got slime on his hands."

31 for 21, jobs

Bryan and I are doing GREAT with this whole "parenting 4 boys" thing.  No, really, it's awesome.  I mean, we're a little tired sometimes, but we've had good playtime, and meal times, picnics in the park, walks around the neighborhood...we all even ran errands together!

However, Bryan goes back to work in 2 days.  TWO DAYS, PEOPLE.

And I start my new job (for the first time in 6 years) a week from Monday.

Holy hell.

I was really really really hoping that we'd be able to ease into this a little more.  Bryan had planned to have a couple weeks at home, I had planned to have almost a month before my start date.  But, you know.  Because of crazy Ukraine and all...we don't.

Oh, and because we got back later than planned, the center where they do the intake evaluations and will write Zeke's IEP so he can start school is CLOSED right now until the 17th (if you don't have a calendar handy, that is the day I am supposed to start my job.)  Sooooo.  That means that we have to find a private school so that he can start preschool before the county can take him.

Where's my paper bag?

No really.  It's going to be fine.  I think.  I am totally grateful that we have our jobs.  Bryan's employer has been MORE than understanding with his time off.  My new job is dreamy (K-5 literacy specialist!) and my principal has also been incredibly flexible with this nonsense.

And yesterday we visited the cutest, coziest, happiest, most down-to-earth preschool that I have ever seen.  It's the kind of center that I could see myself running some day.  They happen to have openings for both Guy and Zeke, even though they are just shy of max capacity.

Today, I think that we found the final puzzle piece to the kids' care while I work- we interviewed a nanny who will pick the boys up from their respective schools, then bring them home and get them started with snacks and homework.  She reminds me of my mom, with a little more energy (sorry, Mom).  She's zippy, happy, and handles things in the "pick your battle" kind of way that I do.  I love her.  And did I mention that she's willing to start dinner and do laundry???

Laundry, people.

Sold.

So, anyhoo.  That's where I am right now.  Trying to balance the fun stuff with the detail stuff...trying to take life a day at a time, but also not letting the future come up and kick us in the hieney.

31 for 21, a Chase story

Excellent indirect Chase story:

When Chase was little, one of my fears was that he might not have friends, or that other people, even adults, might be uncomfortable around him, might be afraid of Down syndrome.

I don't have that doubt so much anymore.  He has friends all over the place now, he's a little rock star.  But you know, you always have doubts...like, is this an act?  Is there something there that is superficial, like he's getting special attention now because he has Down syndrome? 

I guess it's a classic example of "yeah, but do they really like me" doubts, with a T21 twist.

But a couple weeks ago, I got a message from a college student who works with Chase's age group with the children's program at church.  G told that he was leaving to start another campus, and "Chase is like my favorite little kid" and he will miss him.

How sweet is that?  To have this guy (who we talk to frequently in person) go out of his way to tell us that Chase is cool?  And how reassuring that even when no one is looking, even when it doesn't count, even when it doesn't really matter...he sees Chase as a little kid.  Not a little kid that they are nice to because he has Down syndrome...but a favorite because he's Chase, no matter what the chromosome count.

There are going to be people who judge my kids for what they look like, or what they can't do...but there are SO many more out there who will look at Chase (and Zeke!) and love them completely for who they are...and that, friends, is awesome.

31 for 21, Two Options

Ok, I'm kind of copping out on today's post. My excuse is that Bryan and I are sharing a laptop right now, and he gets really grumpy when he's away from it for too long (although I feel compelled to note that I have been on it for the last almost-two-hours, so he is entitled to it). So, I'm leaving you with two choices (think of it like those Choose Your Own Adventure books you read in middle school):

1.Read about our day in Kiev today.

OR

2.Read about how the Fabulous Tiffany Larsen took my three boys to the Charlotte Buddy Walk yesterday and totally represented the Madd House, even though we couldn't make it.

If you choose option 2, please pay special attention to the picture of Gavin picking his nose.

If you choose option 1, please note that the boxer shorts on the floor are indeed, clean.

31 for 21...Year FIVE!

Grab This Button

It's that time of year again- October is Down syndrome Awareness Month. And how acutely aware of Ds we are this year, because we are STILL in Ukraine at this very moment, finishing up our adoption of Zeke, who happens to have Ds.

In that line...let's talk about the culture here towards disabilities- because it's very much in our face right now. Keeping a child with Down syndrome here just isn't done. It's not accepted. There are no programs, no schools, no inclusion programs...there's no state programs to assist with PT, OT, or Speech Therapy. There isn't a More Alike Than Different campaign taking place.

I can't tell you how grateful I am to live in a place that this attitude isn't the norm. No, my life isn't easier with Chase (and now Zeke!) and their extra chromosomes...but it's GOOD. And their lives are GOOD. And they are happy, silly, smart, and amazing little kids...how could they not matter in some peoples' eyes?

We're missing our Buddy Walk in Charlotte today. But we're doing our own walk through the streets of Kiev. Ok, well, Bryan and I are walking, and Zeke rotates between chasing the pigeons, riding on Bryan's shoulders, walking nicely between us, and sitting down in the middle of the sidewalk when he feels like it. :)

We'll see you back here for 30 more days of continuous blogging. Feel free to comment with questions- I'll try to answer them all in the next month.