Tuesday, December 16, 2014

Won't the real James please stand up?

So James started army crawling the beginning of June, and six months later….still army crawling. Like a few feet if he’s very motivated.  He could army crawl anywhere if he wanted to, but he has this gift of being satisfied with whatever is right in front of him. If that’s nothing, there are his feet, hands, belly…the possibilities are endless!

Joke's on you, Mom! I don't need any of those toys you strategically placed away from me!

 However, we can see a big difference in his overall muscle tone, and he’s getting better at going from sit to stand when he’s sitting on a bench or a step! And we have plenty to keep him busy to keep moving toward that glorious day when he will be walking. Here are some of the fun activities and contraptions James gets to experience:

Proprioception activities

Proprioception is our ability to sense the positioning of our bodies.  To help improve proprioception, therapists often give patients a little more input to help stimulate that feedback to the brain.  James loves this stuff. One day, Thomas was working to help James sit with his legs in a 90 degree position on a bench. This is what happened to James.

Loving the ankle weights and theraband to help with legs going in the froggy position

When Thomas busted out the ankle weights, I was a little terrified, but James absolutely loved it.  The weights helped give feedback to his brain that this was the way his little legs were supposed to be positioned when sitting on a bench.  We started using the ankle weights when he was standing, too, as he often didn’t really want to bear weight and just let his legs hang.  Once we started using the weights, we started to see some improvement. 

James’ PT also helped us create a makeshift weight belt, using a sock and the beloved ankle weights again.  

We secured the position of the weights with rubber bands, and now we use the belt when we play on all fours and when we practice walking on our knees as well. The knee walking (sometimes with our knees over his, walking him through the motions) helps develop the alternating motor pattern James needs to crawl and eventually to walk, all with the bonus input of the weighted belt.

 Activities with new, fancy orthotics: 

Though the ankle weights helped James’ standing, he hyperextended his knees like crazy, meaning that he locked his knees to the point that he would sort of hang on his joints.  Definitely not healthy for his little legs in the long run.  So we started to look into some orthotics.  Often times, kids with Down syndrome will get a SureStep SMO (Supra Malleolar Orthosis).  This is because of soft and flexible flat feet. The SMO will help support the ankle and right above the ankle to allow for more stability. 

We needed more support than the SMO offered, but we also didn’t want to inhibit James’ development and movement during floor play with an orthotic that was too restrictive.  So we talked to James' therapists and individuals we respected and trusted, and eventually got this fancy thing!

It has the SMO, but on top of it, there’s a pullover that gives a little extra support when standing, and it becomes an AFO (ankle-foot orthosis). http://www.surestep.net/pullover.php

This brilliant contraption has been a blessing to James.  When we practice standing, we put on the pullover.  Otherwise, we hang out with just the SMOs when we’re doing floor play.  The only negative thing has been finding shoes that are big enough to fit over this monstrosity.  We had to go up three sizes, but the wonderful folks at Stride Rite were committed to finding a shoe that would be just right.  

And to practice standing and sitting and standing again, we sing the chorus from Eminem’s "The Real Slim Shady"- his new favorite song. Parents of the year. In our pathetic defense, it was the first song that came to mind that included something about standing up.  

What are they singing to me, and why are my shoes so giant?

We also put stuffed animas on top of our head to get him to stand up and grab them! The best thing for him is engaging his quads in moving up and down with controlled standing and sitting.

 It’s awesome to watch him get a little bit stronger each day.  Though it takes a little bit longer to hit all of the milestones that typically come to mind, we are blessed to see all of the little changes.  And while we are waiting, our chatterbox has plenty to say! This week’s newest words are “socks” and “wee” for kiwi--two things very close to his little heart. Maybe he wants to talk about walking before doing it. This sweet boy is full of surprises.

Tuesday, October 28, 2014

First words

For the past few weeks, our animated babbler has been working on saying his very first words. Like we are finding with many milestones, there doesn’t seem to be a definitive time when a milestone occurs.  Right now, it’s a lot of, “did that just happen?” If you’re lucky, someone else is around to witness and confirm the event. And then the new skill will disappear for a bit and slowly creep it’s way back in until it’s consistent. We’re definitely in that process with spoken language, but when we hear those words, it’s for sure worth the wait. 

What have we heard?

Dada- Dada has been around for a little while- not usually limited to two “da's,” but most definitely associated with Thomas.  When James knows that Thomas is coming home from work and hears the door unlock, he’ll enthusiastically say a plethora of “dadadas,” also sometimes accompanied by the gesture for dad.

Yiayia- Yiayia is the Greek word for grandma, and both of his grandmothers have claimed that to be his first word for a long time.  We were happy to play along, but now the word is definitely here.  He loves to talk to both of his yiayias on the phone when he can’t see them in person and gets jealous if I’m taking up too much of the conversation.

Mama—This one is heard less frequently than "dada" and "yiayia" but becoming more consistent. He used to say it only when he was upset, but I’m hearing a few happy “mamas” now, sometimes even followed by a hug. :)

No- One of our most used. Though we are not yet walking, the toddler days are here! It often comes out just as a short, “oh,” accompanied by a face scrunch and arm swipe.

Bye- One of my favorites. James definitely prefers waving bye-bye over saying it, but we’re hearing it more and more frequently.  And I love when we catch him waving at himself and practicing the word.

Go, go, go-  There's never just one go, and it's more like "doh, doh, doh," which I hope never changes.  This one is used when he wants to be pushed in his favorite toy car, when someone is stopping the grocery cart for too long, or when he thinks it's time for the vacuum cleaner to move it. 

Eye- James loves pointing out the eyes on his stuffed animals and any other creatures he can find.  And then snuggling with them.

Ghost words—“More” and “hello” have been heard and confirmed by at least two sources, but he doesn’t just show his cards to anyone at anytime.  We have to work for those.

James still primarily communicates using his gestures and most likely will for a little while.  But when we see him able to use the word, we back off the gesture and really encourage him to say it! And we repeat words…a lot. So many times. But the repetition is helping him make sense of this crazy world, and we love when we get to see the effects.

Wednesday, October 1, 2014

Tongue in, please!

You might notice that many babies and young kids with Down syndrome have a habit of sticking out their cute little tongues.  

There’s some debate about why this happens, but causes might be hypotonia (or low muscle tone) or having a small mouth and high palate, which can make the tongue a little too big for the mouth.

We’ve been working on keeping James’ tongue in his mouth ever since he was a wee little guy through a number of things.  We’ve done oral motor exercises with our therapists; used a toothbrush, wet washcloth, or z-vibe to stimulate the oral muscles; and James has worked hard to be able to drink out of a super short straw. 

Drinking out of his Honey Bear straw cup from Talk Tools

Since he now is able to understand the concept of keeping his tongue in his mouth, for the past couple of months, we just say, “tongue in” and lightly touch his tongue so he pulls it back in his mouth.

The other day, James decided to take matters into his own hands when I said, “tongue in, please,” and before I could reach his mouth, he stuck his own little finger in his mouth and adamantly pushed in that tongue. 

After a couple of days of pushing in his tongue himself, he decided that maybe I needed some work on tongue placement, and he was the man for the job.

And now we have a weird, fun game we play.

We’ve created the tongue police.  Watch out, Michael Jordan. :)

Thursday, September 4, 2014

Thanks for being great, summer!

Always sad to see the summer go!  We wanted to share a few of our highlights.

Starting to “sing” was a recent summer highlight. Here is James’ contribution to  “If All the Raindrops.”

His other favorite is the VeggieTales version of “Walk Like an Egyptian.” (Bob and Larry have an 80’s album--you should probably check it out).  He joins in on the “oh weh ohs.”

James developed some pretty sweet dance moves this summer (see the raindrops video above for a sampling).  They really picked up after the day he came with me to music class at Vacation Bible School.  He loved watching the kids dance, and now he can’t stop. 

He also took it up a notch at the beach with his Gpa’s daily sing-alongs, which were a highlight in and of themselves! Gpa wrote a song for each of the grandkids as well as a song for a new Greek word each day.  The favorite was "Papia" (duck).  We're expecting to hear it on the radio sometime soon.

As long as the temperature wasn’t too cold, pool time was super fun! We loved sitting in the water, splashing, and sharing all of our thoughts on life- there were many.  Being carried into the deeper, colder part was a little scarier, but after some coaxing, it was pretty fun, too.

This summer James ate avocados like he would never see them again--enough that it would make the summer highlights list.  When we gave him pieces of avocado, he tossed the rest of the meal off of his tray, as nothing else compared. One night, he had a small tantrum, because he saw me put a spoonful of avocado on my plate instead of his.  Since he still gets a little frustrated with utensils, he just happily gobbles and smears them everywhere like a little green avocado monster. It is strange and funny and appreciated.

Lots of signing.…and lots of swinging…and sometimes signing while swinging. We learned “go” this way. 

Also sleeping while swinging.

Seeing cousins and friends in Maryland/Virginia and Pennsylvania was always the best and cause for immediate hyperactivity. Here’s his first time at the kid table on his own with his Pennsylvania cousins—much better than with those boring adults.

We loved visiting farms this summer! We went strawberry picking, and there were so many funny animals to see. And when visiting our friends’ farm, we had our first quad ride.

Road trips, eating sand, dolphins, museums, parks, baseball games, driving with the windows down (and little hands up in the air catching the breeze)...oh, summer, how we’ll miss you! But bring on the pumpkins!