Wednesday, October 31, 2012

Happy Halloween, Mateys!

The boys and their friend, Cara Grace.

Caleb and Cara Grace are big buds!

Even Mama got in on the action this year! Argh!

Caleb won Best Costume for his age group! The prize: a Sonic card, which to him mean Ice Cream!

Caleb has worn these socks for 48 hours straight--only off for bath time.

James leads the youth in a cheer.

Headed home, tired but smiling!

Tuesday, October 09, 2012

James's IFSP

Today is just a normal day in the Norvell household. We had our annual "IFSP" today, which stands for Individual Family Service Plan. A lady from the Department of Human Services meets with our Developmental Therapist (Jeff) and Jon and I to make sure we're all on the same page, and that we have goals for the next year. Prior to this meeting, Jeff did an assessment of James's development, and I thought you'd be interested to know the results:

Gross Motor: 12-month range. He is not standing alone and taking steps, but he is climbing into adult chair.

Fine Motor: 18-month range. He is scribbling spontaneously, but is not building a tower of 5-6 blocks.

Cognitive: 18-month. He does point to pics in books, but is not naming two objects.

Communication: 19-month. He does point to one body part when asked, but is not speaking twenty words.

Self-help: 16-month. He does imitate housework, but does not show wet or soiled pants.

Social/Emotional: 16-month. Stranger anxiety has reappeared, but he does not pick up and put away toys.

So those are the official findings, and here are my thoughts on them:
Gross Motor: Jeff fully believes that once James starts walking, he will really jump forward in this area. Until James walks, though, he'll be stuck in the 12-month range. I am proud, though, that he continues to make progress. His "scoot," which has served him so well, is slowly turning into a hands/knees crawl. While he is not walking, he is continuing to make very good progress without plateauing.

Fine Motor: Not much to say about that.

Cognitive: This one is tricky, because I believe he CAN name two object, but he chooses not to. He is two, after all. However, there are times when I really don't know, so marking him at a lower level helps us make sure that we all work on it with him.

Communication: I'll list his words below, but this one is a little controversial. Jeff (and apparently DHS in general) does not recognize sign language as communication. Therefore, James only gets credit for the words he verbalizes. But again, it's no real harm to mark him lower than he actually is, because it encourages us to continue working with him.

Self-help: That boy is a cleaner! Give him a napkin, and he goes to town rubbing down whatever he can find. Isn't it funny that that's a developmental milestone? Just one of those things that all kids do, but no one really pays attention to. In regard to wet/soiled pants, well, I've discussed that with potty training. He'll learn!

Social/Emotional: Stranger anxiety, favoring mom over dad (when it used to be the other way around) are good signs that usually occur when a child gains more mobility. However, like is listed, he hasn't learned yet to put toys back where they belong. He will help me clean up, and enjoys and understands putting blocks where they belong, but only if I'm there directing him. Usually, he pulls everything out (books, blocks, clothes, pillows, etc.) and leaves them there. Thanks, son.

So, there is the assessment and my thoughts on them. I'm super-happy that James is where he is. Basically, he's at the 18-month range, and I think that's awesome. Of course, the blaring "no walk" makes him seem much younger, but he continues to gain strength and balance, and he'll get it eventually! I'm so proud of him.

Based on this assessment, Jeff and I decided to leave our goals as they were, with the addition of working toward building a tower of 5-6 blocks. You can kind of infer the other goals from the assessment: standing alone, naming two objects, speaking twenty words, etc. Once that is decided, this DHS lady joins us for the official IFSP, and we all check in and make sure we're happy with what's going on. Since I already had the discussion with Jeff, there's really not a lot of discussion needed with the DHS lady. We sign papers and agree to meet in another year. Jeff does a quarterly evaluation, but we only do this IFSP once a year, unless I feel a need to call one sooner. Next year we will be transitioning to receiving therapy from the school instead of from Jeff, so we'll be learning new things then.

As a matter of fact, Jon and I are going to a talk tonight that discusses our rights and other things we need to know about kids with special needs in schools. But that's a side note.

So, onto the words that James knows. James is a talker, just like his brother! It is non-stop noise around here! I LIVE for the hour of rest time in the afternoon that gives me 60 minutes of uninterrupted thought. Bliss. James is learning sign language with the speech therapists at Hope Landing, and of course he's also learning verbal speech. He's doing so well, and I've noticed lately that he's starting to do many signs and words independently instead of only repeating what others are doing. That's a great step! Generally, with the words he knows, and the "yesses" and "nos" that I get from him, we communicate just fine, but I can't wait for him to tell me stories and ask me questions. Then I think I might require TWO hours of rest time in the afternoon! Really, I enjoy every minute of discussions with Caleb and James.

Okay, I promise we're getting to the words!

Here is what James VERBALIZES. He speaks them out loud. Anything with an "(I)" means that he does them independently:
  1. Mama
  2. Dada
  3. Bubba
  4. Nana (I)
  5. Banana (I)
  6. Light (I)
  7. Cat (I)
  8. Dog (I)
  9. Meow (I)
  10. Woof
  11. Moo
  12. Quack (I)
  13. Brrrrummmm (car) (I)
  14. All Done (I) (First two-word sentence! Says when he's finished with things, or after we've said a prayer. So cute!)
  15. Please (I) (Says when he wants his cup of milk, usually, and accompanied by the "please" sign.)
Here is what James SIGNS. He uses ASL, or usually his own version of it. Just like "banana" sounds like "nana" when kids first say it, signs are also simplified.
  1. Light (I)
  2. Dog (I)
  3. Granddad
  4. Train
  5. Book
  6. Boat (I)
  7. Ball
  8. Swing (I)
  9. Please (I)
  10. Milk
  11. Shoes
  12. Flower (I)
  13. Bear
  14. Elephant
  15. Duck
  16. Potty
  17. Sleepy (I)
  18. Nose
  19. Mouth
  20. Hat
  21. Up (I)
  22. Eat (I)
  23. More (I)
  24. All Done
  25. Diaper
  26. No (I)
  27. Baby(I)
So you see he has plenty to say!

Of course there's more I could say about his development, but I think this post has gone on long enough! I hope this gives you a little insight into what we do with James.

October is Down Syndrome Awareness Month. If you read this blog, you know someone who has Down syndrome, which makes you much more aware than most! But, in the interest of promoting awareness, I'd love to know if you have any questions. Do you want to know anything about James? Our family dynamics? Thoughts about our future? Of course, we're only 2 years into this, and we have so much more to learn, but I'd love to answer any questions you have! Just leave a comment and ask away!

Monday, October 01, 2012

Potty Training, Day 2 and following

Well, based on blog posts, James's potty training only lasted one day.

Tada! He's trained!

Okay, fine...he's not.

Well, Day 2 and 3 and onward were so very unlike potty training with Caleb. When we potty trained Caleb, I basically took a week off from life. I cancelled lunch dates, stayed home from church, and basically avoided anything that took us away from the house.

This time, well, welcome to the world of being a Second Child. We kept up our hectic pace, added a few lunches and dinners out, didn't forget any therapy appointments or anything else we could add to our days. In short, James was in diapers most of the time.


When he wasn't in diapers, he showed great promise! I believe I can safely say he has not learned when he needs to go potty. And, given the sub-par training we've given him, that's to be expected. But he has learned what he's supposed to do on the potty, and he's pretty consistent at doing it!

So, we've kind of settled into a compromise. For the most part, James stays in diapers. However, I offer him the opportunity to potty several times in the day: before/after nap, before/after bed, and if he starts showing signs of needing to poop. I put him in undies only if he's done a good job going potty, and I can be fairly certain he won't have an accident for at least 20 minutes.

Surprisingly, this compromise seems to be working very well! His diapers are staying drier, and he's using the potty when I give him the opportunity. I even put the froggy potty in the van today for use after our therapy appointment, and he did great with it! And his diaper rash (which had been non-existent until a few months ago, and now is bordering on chronic) is getting a good chance to air out and heal, which is a bonus.

One funny thing we've learned is that this boy cannot contain himself when it comes to giggling. If he giggles, he's going to pee. There's just no way around it. It's because of the low muscle tone, but it comes in handy when I know he needs to go potty, but he just won't do it! But even Caleb has learned: Don't tickle James when he's in undies!! Definitely learned that one the hard way! Haha!

Friday, September 21, 2012

Potty Training Day 1

Yesterday was surprisingly uneventful regarding potty training. I sat James on the potty every 30 minutes, and he went every time! Once I was a couple minutes late, and when I went to pick him up to put him on the potty, he'd already gone. Another time he didn't go, so we took him back off. About 10 minutes later I was going to try again and he started pottying just as I was about to pick him up. So those were our only two accidents!

Granted, he was in a diaper for a good part of the day--during nap, while Dad was on duty, and when we went to dinner at the church. And I think that's just going to have to be how it is this time around. As much as I'd like to hole up for a week, it just isn't feasible! Hopefully switching back and forth between diaper and undies won't be too confusing.

After dinner, James's diaper was almost dry, and he went immediately when I put him on the potty, so I feel like that's a good sign.

He's starting to get frustrated, though, getting stiff as a board when I'm trying to sit him on the potty. I remember that same resistance with Caleb. Usually a book or song distracts him enough to let me get him on the potty.

So, there you have it. Day 1. Day 2 is commencing!

Thursday, September 20, 2012


I had just turned off the water in the shower and wrapped my hair in a towel this morning when I heard, "Lydia, come see this!"

I have a general rule to never leave a warm bathroom while I'm still wet, so I started drying off. A more insistent, "Come quick, you're going to miss it!" had me wrapping the towel around me and slipping down the hallway on wet feet.

James had a milestone yesterday--taking five steps while only holding on with one hand--so I wondered what he was doing this morning! As I slid into the living room, I saw James clumsily, yet happily, swinging a light saber toward his Daddy, who was gently tapping his own light saber on James's.

"Look! We're sword fighting!"

As I stood there cold and wet in my towel, I had to laugh at a dad's definition of important events in a son's life.


Speaking of milestones, James and I are about to attempt a biggie: potty training.

Before you tell me how crazy I am, I kinda know. But do you also remember I took on potty training with Caleb at 18 months? It wasn't really the route I'd recommend, and we had a LOT of frustrations, but it worked out in the end, and evidently I'm a glutton for punishment.

Kids with Down syndrome don't typically potty train at 2...or 3...or maybe even 4 years of age. Low muscle tone effects every part of their bodies, including bladders...and the ability to control them!

But...let me just give you the reasoning.
  • It's been a general rule with James that it will take him longer to learn things, so let's start early. I'm applying that rule to potty training.
  • James has been very successful going peepee in the potty, seemingly on purpose.
  • His nighttime diapers, while not dry, are definitely less wet than they used to be.
  • His daytime diapers, he can keep dry for long periods of time, and then whoosh! it all comes at once. 
  • He can already sign "potty." When I ask if he needs to go potty, he either gives me the sign as an affirmative, or he shakes his head.
These are all very good signs for potty training, and I don't want to miss an opportunity and end up inadvertently training him to ignore the signs and just go potty whenever, which is basically what I'm doing when I continue to let him wear a diaper.

SO...up went the rugs, off came the diapers, and out came the training undies (thanks, mom!). And yes, the frog potty is back out. When Jon saw it, he sighed, "I wasn't ready to see that again." I kind of agree, but parenting--it turns out--is not about what we parents want. Not sure the kids believe that, yet....or us, for that matter.

As I re-read my daily posts about Caleb's first week of potty training (check out the May 2010 posts), I was very encouraged. Some of the hurdles I'm anticipating with James were also hurdles with Caleb, and I'd forgotten that. But there are a few more these days, and we'll see how they go.

Possible Hurdles:
  • James doesn't tell me when he needs to go potty, just answers "yes" or "no" when I ask.
  • He doesn't seem concerned when his diaper is wet, though he doesn't like a poopy diaper
  • He doesn't seem concerned when he finds himself in a puddle of pee, and just scoots out of it and moves on.
  • James can't walk -- Others have mentioned this problem, but it's really not a big deal, because I carried Caleb to the potty and pulled off his shorts for him for a long time, and I can do the same for James.
  • Our lives are busier. Now I have two kids and a daily out-of-the-house schedule. We can't just pause life like we had done with Caleb, and it's harder for me to give 100% attention to The One Not Potty Trained.
Wish us luck!

Monday, August 20, 2012

James is a Climber

James has learned how to climb.

For several heart-attack-inducing, goose-egg-producing weeks, he has not known how to climb back down, and simply teetered over the edge head-first. Yikes.

Thankfully, we've seen him successfully climb up and down on Caleb's small chair, the "daddy chair" rocker, and Caleb's toddler bed. Talk about the school of hard knocks!

James's current favorite thing to climb is Caleb's small chair. He has even figured out how to stand up in it.

I'm losing years off of my life here, people!

The video below is what I watched him do four or five times yesterday. Believe me that I made this video for posterity's sake, and then promptly (and sternly) got James off the table. That boy is pure second child. Where a stern "no" will stop Caleb in his tracks (most days), James will endure even worse discipline, then head right back to what he was doing.

No children were harmed in the making of this film...only a small heart attack on the mama's part.

Monday, August 13, 2012

Caleb swims!

Despite not swimming much this year, Caleb has overcome his fear in the water! The first time out, he clung to me like his life depended on it (despite the fact that he had more floatation devices on him than most boats). The second time, Grandma was very patient with him, and helped him get more used to the water. By the third time out, he was pushing me away, tell me that he could do it by himself! I'm so proud of him! Of course, he's still wrapped in floaties, but overcoming his fear was a huge step.

Thursday, August 09, 2012

Piano Man

James got to participate in his first talent show tonight! Here's the video of my little man rockin' it out! He ended up dancing a lot more when he sat with me in the audience, but I think he did pretty well for his first performance!

The women with James are Allyn (left), his speech therapist, and Tricia (right), his physical therapist.

Monday, July 16, 2012

Happy Father's Day

I think for the first time since Jon has been a dad, I've had my act together ON Father's Day, instead of making him wait months (or years) for the completed project. This year, I decided to give him bought gifts, instead of getting the boys to make something, which inevitably requires a bit of work from me and I get behind.
ANYway, all that to say that this year I kept it simple. Leanna told me about a site called Trendy Ties, that I fell in love with. The boys wore ties at Easter, and Caleb said that he was "a daddy," which made his own daddy very proud. (Considering Caleb is usually "a fairy mermaid princess," being a daddy is a bigger step than you might think!) It's hard to find ties for little boys around here, so I was happy too find them online, and with daddy ties to match!

I also made a cake. It wasn't pretty, but it was good!

Jon has been gone the whole week before Father's Day, so we decided to celebrate with banners when he got home on Saturday night. The homecoming was sweet. Both boys insisted on being held by their Daddy, and neither would let him go for anything.

Sunday morning, all my men.

I love the bow tie!

Caleb is moving past his cheesy camera smile...for now!

Friday, July 13, 2012

Caleb's First Movie

Caleb is a very imaginative child. It took quite awhile for us to be able to watch movies with a plot. Often he would scream at the intense parts, and we'd have to pause and explain. So we've waited awhile to see a movie on the big screen. I wanted him to see Brave, but don't think he could have handled the bear fights. But, in the summers, our theater offers a different movie every week for free to anyone who wants to come. I figured that would be our best bet, so if things got out of hand, we could leave, no money lost.

However, all the movies are geared toward older kids, so finding one appropriate for Caleb was hard. Finally, they showed Mr. Popper's Penguins this week. Not only is that a fairly mild PG, it's also a movie he'd seen before, so I knew we'd be okay. We even pre-watched it at home a week ago, just to make sure there were no surprises, like a huge penguin honking in the camera. (Okay, writing this, I sound like a paranoid parent....)

On the Big Day, I asked Caleb if he wanted to go to the movies, to which he gave me a pretty solid "no." For some reason, he was convinced he wouldn't like it. I asked him if he wanted popcorn, and he said "no." I asked if he wanted Dr Pepper (something he's only ever had a sip of), and his eyes lit up.

"I like Dr Pepper!"

Well okay, then! We'll get Dr Pepper! Then he asked if they had Diet Coke, because he liked that. (Thanks, Mom, for putting that idea in his head!)

He was still a little unsure about it on the way. Jon was unsure about the Dr Pepper. I mean, seriously, we still water down his juice and lemonade! (To be fair, that's the way Jon drinks it, too, so it's kind of normal around here, but Dr Pepper would be quite a departure.)

Not a great picture of me, but I couldn't resist that cute face!

Big boy headed inside!

Immediately on arrival, Caleb disappeared into the arcade. There weren't many people there at that moment, so I just kept an eye on the doorway as I stood in line for our popcorn and drinks. More kids arrived, and things were starting to get hectic. Caleb had not come back, despite my calling his name, so I had to go find him--sitting in the driver's seat of some arcade game. That boy has NOT learned how to stick close, yet--a product of being a minister's kid in a small church, I suppose.

Once at the counter to order our snack, I pointed out the Icee, and that's what we decided upon, a Strawberry/Coke Icee and a large popcorn. We headed to the theater, where I learned my lesson to get there early! I found a couple of open seats on the second row, and the movie started!

Caleb was in awe, I think. He gazed at the huge screen, deftly grabbing bits of popcorn without looking. Very often he would say, "Drink, please," and I would hand him the Icee, which he sucked down so quickly that I had to start taking a sip before every time I handed it to him, just to make sure I got some!

At one point, Caleb looked at me and squealed, "I love the movies!"

He giggled when all the other kids giggled, he gasped and "ew"ed. He stayed in his seat until near the end, when he asked to stand. He never got fidgety, and never wandered. When the story ended happily, he clapped with delight.

Then he turned and said, "It's time to play games!"

So we headed to arcade, and I changed a dollar for quarters...and then quickly after, another dollar for quarters.

We drove the game I'd found him on before the movie. Turns out 50 cents gets you about 50 seconds of play time, and then you have to pay more in. Perhaps good driving could earn you more time, but my husband can tell you that I am no good driver when it comes to arcade games! I'm pretty sure Caleb and I took out an airplane.

Then we moved on to The Claw games. Lost our money on the first one (big surprise), but the second was full of balls, and all the kids ahead of us were having good luck scoring them. Sadly, the top layer "easy pickin's" of balls was already gone by the time we got there, but Caleb did a good job trying.

At this point, we were out of quarters again, and I realized he had just as much fun without putting in the quarters, so we zigged and swerved on the "snowmobile" game until it was time to go. As I looked around, I found out that most of the kids were doing the same thing!

As we headed out the door, we found a large tattoo that someone had spent 50 cents on. I picked it up and asked a nearby adult if any in her passel of kids happened to lose a tattoo. She paused to look at a kid taking a fistful of tattoos out of his pocket, then looked back at us and said, "It's fine. He can keep it."

It's a diamond that says, "Lucky" on it.
Well, that tattoo was the highlight of the movies. He ran out to show his Daddy (who had taken James to therapy during our adventure, and was now coming to pick us up), and told him all about the movie and the Icee and the popcorn.

I was so grateful that I could see this "first." I enjoyed every minute of it.

When it was time for nighttime prayers, I asked Caleb if he wanted to thank God for the movies. His eyes brightened as he thought of what he wanted to thank God for.

"Dear Lord, Dear Lord, (repetition is key in his prayers lately) thank you for a great day. And I have the coolest tattoo ever. It is a diamond. Amen."

Tuesday, July 10, 2012

The Grasshopper and the Boys

My boys have really started enjoying each other lately. It's a sweet thing. James is moving from "observer" to "participant," and I think Caleb has liked having the playmate...most of the time!

This morning, I found what is locally called a "Texas grasshopper," though I never saw anything like this in Texas. They're huge black grasshoppers, with yellow, green and red markings. They're quite remarkable, and very easy to catch. They're not very jumpy like other grasshoppers. This particular grasshopper was snacking on my corn leaves. I'm starting to see the start of a little ear of corn growing, but I don't have much hope for it, so it didn't bother me to share the harvest. But I grabbed a mason jar and plopped the grasshopper in, to show the boys.

Caleb, of course, was elated. He thought it was so neat. I was very surprised at how James reacted to it...or really that he reacted any more than just gazing at it. He tapped the glass, held the jar, and was very interested in what the grasshopper did.

After the grasshopper took a few tumbles in the mason jar, I thought we might better let him outside to recover, so we headed outdoors.

I tipped the mason jar over and convinced the insect to get out, but after that he had no desire to move. We all stared at him for a minute, and then James reached out, grabbed the thing, and plunked it back in the mason jar! I dumped the grasshopper back out, and James again plopped him back in the jar. It was so funny! And he was as proud of himself as when he gets the triangle in the right hole in the shape sorter at therapy.

Caleb was a little more intimidated by the creature. It was, after all, the biggest grasshopper he'd ever seen. I think it was last summer (or the summer before?) that these bugs were out, and Caleb held one on the way to church. I actually thought there might be a scene when I tried to pull it out of his hand before entering church, but now that he's older, he seemed to have picked up on some people's aversion to bugs.

So, this morning, Caleb was having some trouble figuring out how to grab hold of the grasshopper. James watched him for a few moments, then once again grabbed the grasshopper himself. This time, instead of dropping it in the jar, he held it out to Caleb, as if to say, "See? This is how you hold it." Then he set it down in front of Caleb.

Caleb, who seemed to understand what James was telling him, said, "Thank you!" and tried again. It took another couple of tries before Caleb got it right, but he was proud of himself when he'd gotten the grasshopper back in the jar. (James, meanwhile, was having a conversation with the cat on the other side of the door.)

It finally came time to release the poor creature, but we all enjoyed our touch with nature.

Here's a video of our morning. Enjoy!

Friday, May 18, 2012

Turtle Adventures

On the way to James's therapy today, we pulled over to carry a turtle to the other side of the road. I decided to let Caleb see it before I dropped him into the grass, and then I asked, "Hey, wanna take him to Hope Landing with us?"

What 3-yr-old boy would say no??

Caleb wanted to name him...well, Caleb...but we settled on Caleb the Turtle, or C.T. for short.

C.T. was pretty traumatized by the time we got there, and C.B. (Caleb the Boy) was carrying him up-side-down, putting him in the playtent inside Hope Landing, stomping all around him...poor turtle.

We eventually got him outside, where it took awhile to get him to come out of his shell (ha ha). While we waited, we found a feisty little caterpillar who refused to be picked up. So, we decided to bring the turtle to him. We didn't know if turtles ate caterpillars, but we soon found out!

Definitely eat caterpillars!

We went inside to pick James up (who did not have nearly the fun we had!), and by the time we got back, C.T. was gone. I'm sure we'll be looking for him every time we go!

Tuesday, May 15, 2012

Caleb's First Real Camping Trip

Jon took some of the youth guys camping for two nights one weekend. Caleb got to go along--his first real camping trip!

Jon tells me that right after this picture, Caleb went end-over-end the rest of the way down the hill. He thought for a moment that it was the end of the adventure, and he'd be taking Caleb to the ER, but Caleb walked away from it, just fine!
I was a little nervous because it was *real* camping trip, with no bathrooms nearby or anything. But, the campsite was less than 30 minutes away, and I could come rescue Caleb if things went south.

Serious fisherman
Little Missouri River
The day before the trip, the bottom fell out of the sky and flooded the campsite. Campsite #2 was 3 hours away. Thankfully, it had a bathroom, but I let it be known that 3 hours was not too far for me to drive to come save my firstborn if needed.

Caught one!

Caleb had a blast. He caught "five trout fish!" in his words, with his little Spiderman fishing pole. He had his froggy boots on the entire time, and splashed in puddles and ate s'mores and enjoyed himself. It did rain, and the tent he and Jon were using was flooded out the first night, so they had to evacuate to another tent. And Caleb had bumps and bruises all over him when he got home, but it was worth it.

This photo makes my heart melt.
We're now scouting out a larger tent that will hold all four of us!

Sunday, May 13, 2012

It's in the genes

Some people got it. Some people don't.

Jon can. I can't.

Caleb can!

Can you?

Friday, May 11, 2012

Family Bed

Several months ago, we started reading The Chronicles of Narnia as a family. We all pile on our bed, Jon reads, and I give James his bottle before bed. Caleb bounces all over the bed, but he really does listen.

We call it the Family Bed, and it has become a sweet ending to our day most nights, and we love it.

Caleb is so active during reading time, we wondered if he was listening at all. One day, Jon was reading from The Lion, The Witch, and The Wardrobe (LWW), and he described a drink that "stung the throat, but warmed the body." He looked at me and said, knowingly, "I know what drink that is!" And Caleb chimed in, "Coffee!" So, sure enough, he was listening.

We have read three of the books so far, and now we are on to Prince Caspian. The book reintroduces the four children from LWW, who are easy to love and remember, so Caleb is enjoying this book.

Both Jon and I remember being read to as kids, and I love that our own kids will have similar memories. I love that they love it! I love seeing Caleb's face light up when he understands what's about to happen, or the way he bursts into laughter at a silly joke in the story. I love how James wants to see the pictures in the book, and how he reaches out to snuggle with Caleb.

These are sweet memories for this mama.

Wednesday, March 21, 2012

World Down Syndrome Day

Down syndrome is essentially having three copies of the 21st chromosome (where most people only have two copies). Therefore, March 21st (or 3-21) is the day where we celebrate and promote awareness.

I never remember having a bad concept of Down syndrome, or of the people who had it. When I was in high school, one of my friends adopted a brand new baby who was diagnosed with Down syndrome. I really didn't remember a whole lot of differences. I remember she spit up on my floor, which isn't any different than any other baby I've ever met. I remember that when she got sick, she got REALLY sick. And I know that now, her mama is so proud of her, and of all that she has accomplished.

James is almost 19 months old now. As he gets older, his differences are slowly coming to light. Kids with typical development will generally walk by 18 months. We've now exceeded that. Kids with typical development will generally do away with bottles, and be fully on table food by the same age. Those are goals we have yet to meet. So...yeah, he's a little different. Sometimes people don't know how to feed him or play with him. Sometimes I feel awkward telling a stranger that the "baby" they see at the restaurant, eating baby food and babbling, is almost 19 months old. I feel like I need to put a disclaimer on there. But I don't. Because he is who he is

"If I could eat something different, I would!"

But there are also similarities. James has such a cute sense of humor. Peek-a-boo is not just about hiding and showing, it's about timing. The kid's going to be a comedian.

He also loves much. He's a typical little brother who adores his big brother (and swipes the good toys from him whenever he can). He thinks that his Daddy is the best thing since...well...ever. Seeing him lift up his arms to Jon melts my heart.

James swipes Caleb's brand new fishing pole.

He's a "snips and snails and puppy dog tails" kind of boy, with car and truck noises, grunts and high fives. He loves to swing. He loves to dance and clap to music. And he loves playing with balls. He even has his own game of fetch that he plays all by himself.

He also loves to please. If he's not receiving enough applause in his life, he openly asks for it. And man, does he do things that earn our applause. James works hard at his play, three times a week. He spends four hours a week in therapy, and he works and works those entire four hours. Sometimes he loves it, sometimes he hates it, but he pushes through it all. At the end of each session, he crashes out in a long nap. He works out more (and harder) than his mama does, that's for sure!

My own history never led me to believe that kids with Down syndrome should be treated any differently. We have not found anyone who treats James differently. What we have found is that people don't always understand. Considering that only 30 years ago, the life expectancy of a person with Down syndrome was 45, and that person was generally institutionalized, it's understandable that people don't realize what promise a child with Down syndrome has. Only God knows what the future holds for James and for others like him!

It's sobering to realize that people make sweeping judgments based on their misunderstandings. Did you know that 9 out of 10 babies that are prenatally diagnosed with Down syndrome are aborted? Doctors, mothers, family members, even Google searches--can give dire predictions about the child's future.

James's 19 months have not been easy, but it's rare that I've even noticed that. What I have noticed is what a supportive family we have, what a church we have who truly lives like the body of Christ, what a different mom I've become with schedules and prescriptions and appointments kept straight in my mind (and on my calendar!), what neat people we've met along the way, and what an amazing addition to our family James has been. This little guy has stolen our hearts.

Let me introduce you to a couple other little guys. These are little boys who have Down syndrome, and who are in orphanages in other countries. The care for them is often minimal, and any major medical interventions are put off until their adopted families can take care of it.

Xander. This little boy is a year older than James. He caught my eye a long time ago. He reminds me so much of James before his surgery. That same pale face. The description of "not very active" and "explores the environment with his eyes." This little boy needs help!

When I first saw him, the photo shown was of him as a baby. He was making a face that James likes to make. I pray for this little boy, that he will find a home soon.

John Mark. Here's a little guy only a month older than James. What a cutie pie! From his description, it sounds like he's quite the people person. The family who adopted him would be adopting a little bundle of joy.

I am becoming more and more convinced that--as God's adopted children--we are called to adopt. Perhaps you've felt the same. And maybe adopting a child with special needs sounds a little daunting, but let me encourage you! "Anything you have done for the least of these, you have done for Me." Who knew sacrifice could be so fun?

Maybe you're not interested in adoption. Your quiver is full, your years are many, ... whatever the reason. I encourage you to be informed. Recognize the issues (like the new MaterniT21 test) and fight for the rights of these children. Also, reach out and help someone you know who may have a child with special needs.

Today is World Down Syndrome Day. Celebrate by wearing blue and yellow, hugging someone with Down syndrome, getting adoption information from Reece's Rainbow, or maybe letting people around you know that you love someone with Down syndrome. Thanks for loving James.