Sunday, October 6, 2013

What to Write

On the first of October, I recommitted to being more diligent about updating this blog. Ideally, because October is Down syndrome awareness month, I would love to blog every day regarding something important pertaining to Ds. But the truth of the matter is that in our lives, Ds just isn't as big a factor as I thought it was going to be.

Right now, Levi is 27 months old and in many ways, behaves just like a 2-year-old. He formulates a plan about what he wants to do and then sets out to do it. If he gets interrupted or told "no", he gets mad and will seek to find a way to do what he wants anyway! He is curious and destructive and adventurous and full of laughter... (and naughtiness)

His current favorite naughty activity is stockpiling goodies behind the couch. Everything back there has been lovingly dropped from about 3 inches above the back of the couch - placed with intense care, like with a game of couch-Plinko.



The downside to Ds is that in some ways, Levi is much younger than 2. His ability to pay attention during certain learning activities is limited and his comprehension of following directions is less than many other children of his chronological age. There are also delays in fine motor and gross motor skills. This can be particularly challenging when trying to assist Levi in becoming more independent in activities of daily living. For example, he understands that shoes go on his feet - but he doesn't understand how to actually get it on his foot and even with a simple slip-on shoe, it can be challenging to him to get everything lined up just right so that he can get his foot aligned and into the shoe. The biggest hurdle is his lack of language. He seems to understand at least half of what we say to him when we talk about "regular" things in our day. But aside from the 10-or-so "functional" signs that he has and uses appropriately, he's not able to express his thoughts and feelings in a useful way.

So essentially, his babyhood has been extended in some ways and at the same time, toddlerhood is already in place. This does make for some challenging days. But luckily, Levi is adorable and sweet and affectionate and lovely enough that most of the time, no one minds the extra effort needed to help him through those challenges.



Tuesday, October 1, 2013

It's October Again - Down Syndrome Awareness Month!

It's been forever since I've written about Levi or Down syndrome. And it's not because I have nothing to say... it's because life, as always, is unexpected. As a mother of 4 and also recently surro-mama to another, it's hard to find time to say all the important things. Eventually, there's so much to say that it's hardest to know just where to begin.

But a new month brings new beginnings and so I will begin anew with trying to keep this blog current. And what better way than to take a quick look back at the past.

October 2011

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October 2012


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October 2013


"Time does not change us. It just unfolds us." - Max Frisch

I can't wait to see how the next year unfolds for Levi....





Thursday, December 13, 2012

Oh Brother!

Sometimes having a brother, especially one close in age, is awesome. Someone to play with - someone to laugh with - someone to get into trouble with....

Sometimes having a brother - is an chance to exact revenge.

Oh, your hair is so soft! Mind if I pull it a little? That's right - just pretend I'm not here... 

Check out my awesome, squishy cupcake...

You want it?

I'm such a great brother...

Mmm...num num num.

HaHa - Psych! Mine....

At least they're fun to watch!

Wednesday, November 7, 2012

So Many Words

Sometimes I like to do blog posts on Wednesdays - they're usually just a picture. "Wordless Wednesdays" if you will...

Today, I'm going for the opposite. Because of something awesome, amazing, stellar, radical, fabulous, exciting and long overdue! A new Anti R-word idea. See for yourself....




It's what I try to tell my kids. There are so many, many words to convey how we feel and what we think. Do we have to limit ourselves to hurtful, hateful words when we experience frustration? When we want to be funny in the sarcastic way that so many have? We do not... we can know better and choose to do better. I have hope that by the time my kids are adults, the word, "retarded," will have passed out of common usage and that people will think with their hearts before their words pass their lips. 

Thursday, November 1, 2012

Thankful Thursday

Yesterday kicked off the end-of-year holiday season with Halloween. Next up....Thanksgiving. To start the month off, I'd like to give a little thanks for some of the blessings in my life. Since we just had a major medical event in our family, I will have to put health first and foremost. Things are not perfect right now with all of us - but compared to all the awful things I worried about in the last 24 hours, we're doing just fine.

One of the other things I'm thankful for is how much progress Levi has made in his development and skills in the last few weeks. I'm certain he's still having hearing issues, but he is beginning to babble more. He's willing to practice walking more with his push toy and on the treadmill. AND he's decided that drinking from a straw cup is something he's willing to do (most of the time). If I get pushy about it, I think I can get him off the bottle in the next week....I'm so proud of my little pumpkin!

Drinkin' all by myself....

the more difficult twisty-hold-and-slurp

don't even think about taking my cup

Clapping for Himself - he's even proud about his straw skills!




Monday, October 15, 2012

Good Advice for Fellow Bloggers

This came across my news feed on Facebook and it seems like such smart advice, I just had to share...

http://www.flickr.com/photos/potzuyoko/6549346059/

More, please!

Major, Major Brag Time! After months of watching Baby Signing Time videos and working sign language into his day as much as possible, Levi has finally decided he's ready to show us what he's learned. His very first sign. Yay, Levi!!

Learning to sign can be a huge deal for kids with Ds because they often develop verbal communication later, sometimes much later, than many other kids. Sign language can fill in the gaps until they learn to create all the complex sounds associated with speech. Some kids can develop huge vocabularies in sign language - and as they start learning to say the words verbally, the signs will slowly drop off and verbal communication takes over.

So, we've been working forever, seemingly with no results. Until today. It still took some prompting, but he did do the sign without physical assistance - I'd be willing to be that if we really celebrate and reinforce it, he'll start using it of his own accord in no time. And that will hopefully be the beginning of a snowball effect. Hooray!!


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