Monday, October 20, 2014

Preschool Ups & Downs... and a little something extra too

October 2014
So, I knew it was coming. And yet, it still registers as a shock. Levi now officially has a dual diagnosis of Down syndrome and autism. It was pretty clear when he had his testing for intellectual disability a few months ago that something else was going on. This confirms it.

The doctor's recommendation is to begin receiving ABA (applied behavioral analysis) therapy as soon as possible at the quantity of 30 hours per week. It's intensive - but it is considered the gold standard of therapy for people with autism. And based upon my reading, kids who successfully obtain this intervention generally have high levels of improvement and learning.

My goal for Levi has always been to be in an inclusive education environment, but with his current level of development at 3 1/4 years, it seems unlikely that he would be able to participate and benefit from that learning without having a 1:1 aide with him at all times, possibly not even then.

working on his couch-potato skills 
I am hopeful that with the ABA therapy, we can improve his skills and reduce his delays to the point where that goal is again within reach.

On a more positive note, we also discussed the problem with Levi's ADHD-like symptoms. At his age, he is technically too young to receive an ADHD diagnosis, but his doctor assured me that it is safe to treat his symptoms to see if we can improve his behavior and his opportunities for learning. So finally got started on the same medication his older siblings had been using successfully and immediately, everyone began seeing a drastic difference. His eye contact became more consistent. He looks at you (most of the time), when you say his name to get his attention. He is more willing to sit still to participate in therapy activities instead of trying to get up every 30 seconds. Most notably, his willingness to imitate sounds easily tripled immediately. He is just so present and attentive now! Also, I haven't seen the usual house-ransacking that used to occur at least 4 to 5 times every day. It's amazing. His therapists and preschool teachers are as blown-away as I am! I sincerely hope the improvement continues and that it helps Levi to make significantly greater gains in skills than he has in recent months.

working on fine motor and spelling - Endless ABC's


Preschool didn't start off so well - Levi spent several tear-filled weeks crying through all of his preschool time. We made adjustments to his thyroid medication and some other nutrients that his physician felt might be contributing to anxiety about the new environment. Within a couple of days, he would only cry for the first half of class and then just "suddenly" decide that he was going to enjoy himself and - voila! - no more tears for the rest of the day. After a few of those days, he just stopped crying altogether. It is such a nice feeling to know my pumpkin is finally enjoying himself away from Mom.

In other news, Levi is doing really well physically. He is growing tall (37 1/2 inches) and is up to 33 pounds. He is starting to become interested in participating in activities with his siblings and loves to get snuggles from Mom and Dad. My little guy is getting so big so fast!!



enjoying his preschool field trip to a local orchard for apple and pumpkin picking, with his brother, Evan


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

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