All About "Lefty": October 2013

Yes, the boy is still swimming!

I have a lot of people ask me how Curtis' swim lessons are going. I realize that I haven't given an update or shown video in a while. So here is a blog post that will give you both!

Curtis is having a great time with his lessons. He absolutely loves to swim! He is comfortable in the water and is getting better with his "digs" (moving his arms) and his kicks. Obviously, he is better at "digging" with his right arm than with his left, but he does use both arms.

For the past few months, Curtis and his instructor have been working on getting him to take a breath while swimming. Currently, he can swim all the way across the short distance of the pool without taking a breath, which is awesome, but if he needs to go any further he's going to need that breath. So the question was, "How do you get a kiddo with hemiplegia to lift himself up long enough to get that breath?" Since he doesn't "dig" all that well with his left arm, they didn't think he had the strength to lift his head out of the water for a breath. After his swim teacher consulted with the main instructor/swim school owner, it was decided that it would be best for Curtis to learn to flip to his back to take a breath. He'd float there for a few seconds, catch his breath, then flip himself back over on to his belly to swim. Complicated? Yes. But he had to learn to take that breath.

First things first...he had to get comfortable floating on his back. That took a while. Probably 3-4 lessons at least. At first, he'd curl up into a ball and his left arm would tense up. It was crazy--you could really see his CP during those moments when they'd first put him on his back. He had to learn to relax. He's doing much better now.

Learning to chill

Below are some videos of him swimming--they are not the best quality since they were all taken with my phone. You can make them full screen by clicking the little box in the lower right hand corner next to where it says "YouTube" :)

Video of him learning to flip and float:

This one shows him floating on his back and then flipping to his front (notice the nice strong kicks at the end!)...

And, finally, one more where he flips and floats and rolls and does it all across the whole length of the pool (with help from his swim instructor)...

As you might imagine, all of this flipping and floating and going back and forth is not easy! Like...at all. The instructors tell me this technique for taking a breath is really difficult and sort of a "last resort", because the swimmer often gets disoriented after flipping onto his back. Still, Curtis has chugged along and is doing pretty well, all things considered. He definitely struggled at first, but I really think he's getting the hang of it. The hardest part for him is flipping onto his back. In order to flip his body over, he has to have his head looking straight down before he flips. He always wants to be looking up toward the instructor, which makes the flip harder. Still, he knows what he has to do and how to do it. It's just a matter of perfecting the technique.

Which brings us to a few weeks ago...

The main instructortook Curtis for a few turns during swim lessons and decided that maybe Curtis COULD take a front breath after all. He thinks he has the strength to do it. Since then, they've been working with Curtis on lifting his head up out of the water to take a breath after taking 3-4 strokes. He has to be able to use both arms and "dig" really fast. He has to doggy-paddle or tread water, basically, and he has to hold his big old noggin up. It is no easy task!!

I'm not sure what I think about this yet, to be honest. On the one hand, I'm glad they are giving him the chance to swim and learn to take breaths the "normal" way. Any chance that Curtis gets to do something "normal", I'm on it! I feel like it's a definite plus! But on the other hand, he is struggling so much with it so far that it's hard for me to watch. Not to sound dramatic, but at times I sit there and it feels like I'm watching him drown. I have to take a deep breath sometimes. So far he hasn't been able to pop his head out of the water far enough to take a breath, so his body just sinks. I've seen his face when this happens, and he is scared. He is wide-eyed and reaching for his swim instructor. She says the problem is that he's really only "digging" with his right arm. He has to use both of those arms to stay upright long enough to get that quick breath in!

Here's a video of him swimming and attempting to take a front breath (and then getting some instruction from his awesome swim teacher)...

As you can see, he didn't make it up on his own in that video...but I am hopeful that with LOTS of practice he will be able to take that front breath. And the good news is that they are still working on the back breath technique with him during every swim lesson, so he is getting better and better with that, as well.

I'm so proud of my little fish!

About a month ago (I can't believe it's been that long) I wrote about Curtis being chosen to participate in the "Everybody Plays" advertising campaign for Infantino and Step 2. Well, my friends, the photo shoot was last Wednesday. And it was awesome.

As we drove up to Balboa Park, I saw big red flags that said "Everybody Plays/Step 2/Infantino". It was a bit overwhelming for me those first few minutes, I will admit. There were a lot of moms and kids buzzing around, and I could see the photographer, Kelle Hampton, in the corner of the room. My nerves started to get to me. What if Curtis freaked out? What if he cried?

Well, after being there all of about two seconds, Curtis was fine. He walked right in and was happy to see toys (lots of toys!) and after another couple of minutes, I was OK, too. Everyone that was there to help out that day--all the people working for Step 2 and Infantino and all the assistants--were all so mellow and so sweet. There was no reason for me to stress.

After changing his clothes, it was time for Curtis and I to head out. As we walked (and walked and walked...it was a long way to the shoot location), I had the opportunity to chat with some of the other families and to see some of the other kiddos that were part of this campaign. One of the first kids we came across was a sweet little girl. As we walked, she was being held by her mama and she smiled at Curtis and blew him kisses. I mean...come on! Does it get any cuter? She was there with both her mom and her grandma and I soon found out that they came all the way from Chicago just to be part of the photo shoot. This adorable princess has Down syndrome and her mom was so passionate about the Everybody Plays campaign that they made the trip out just to be part of it. I thought that was pretty amazing!

Another family I met on the walk over was from San Francisco. They came down to San Diego with their 3 young daughters. Their eldest daughter has Down syndrome and she, along with her younger sister, was in the photo shoot with Curtis. These two little girls were adorable, let me tell you! And so sweet. Curtis instantly started referring to them as "my new friends". Clearly, he liked them a lot!

Once we finally made it to the shoot location, they got right to it. Everything was set up and the kids started playing and the camera started snapping away. I pretty much just stood back and kept my distance. Curtis looked at me a few times just to make sure I was still around, and I'd smile and wave, and he'd smile back, and that was it. He loved it.

See the cutie in the yellow beret? That's our guy!

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I honestly don't know what I was expecting when I submitted his photo a few months ago. At the time I imagine I was thinking, "How cool would it be if Curtis could go and represent all the little kiddos out there with his disability?" I mean, it's not every day (or ever!) that an opportunity like this comes up. I always tell myself that I want to do something to raise awareness about kids with hemiplegia (aka "hemi kids") and cortical dysplasia--maybe this would be a simple way to do it. And the photo shoot was going to be right in our backyard--a mere 40 or so minutes away. Why not try? So I did.

And then he was chosen. And I was in shock. I was excited, obviously, but was unsure what it would be like to have him actually be there and part of it all. Like I said earlier--I started having second thoughts, I think I was just worried that he'd hate it or not have a good experience, and I honestly woke up with butterflies in my stomach the morning of the shoot. I really wanted him to enjoy himself. I didn't want it to be something where the photos were forced or he was expected to do something that he didn't want to do. So when we were there, and I saw him having fun, I felt like doing a little happy dance. *sigh* I could relax...

Getting directions from Kelle, the photographer

New Year Cuties

Standing for his portrait

There's a cute story about the above photo...while she was trying to take his photo, he kept inching his way toward the girls until he was standing right next to them ;) Gotta be close to his girls! They are the adorable "new friends" that I was talking about earlier.

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I can't speak highly enough about the environment of this shoot. From start to finish they made Curtis and I feel welcome and comfortable. They must have asked me 10 times if I needed anything. They made sure Curtis was happy and at ease. Not once did he get upset or frustrated or tell me that he wanted to leave. In fact, I'm pretty sure that he didn't want to leave! Like, ever.

See that red hat? They let him keep it. He likes it so much, he asks to sleep in it!

Safety Sam!

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Being part of this campaign--it really was a gift. Curtis had a day of playing and making "new friends". I got to meet some amazing families and all of the great ladies of Infantino and Step 2 and, of course, Kelle. It was just...awesome, for lack of a better word (OK, so maybe it's one of my favorite words). It felt good. It felt nice to be there with the other families and after talking to them even just a little bit...I don't know...it felt like we were part of a team. A team that was there to help these companies with their mission to "help promote acceptance and inclusion for all kids". I am honored that Curtis was there to represent "hemi kids" everywhere! I hope we make them proud!

Because, really, even though he's not a big ole movie star or anything...it's kind of a BIG DEAL that Curtis was even there in the first place. I mean...it's a BIG DEAL that half of those kids (or more maybe) were there--playing and giggling and being themselves and enjoying toys and making new friends. Because most of the time, these kids don't get included in ad campaigns. And why not? They play and giggle and enjoy toys and have friends just like every other kid. They really do. They should be included. They should be represented.

Thinking about all of this--about inclusion of all kids, no matter their ability or disability--made me flashback to when Curtis was getting ready to start preschool. One of my biggest fears was that he was going to have a hard time making friends and fitting in. I kept thinking to myself, "They're going to notice he's different and they're not going to want to play with him. He won't be able to run as fast as them or climb up the playground structure or go down the slide. He'll be all alone." And I'd cry every night before bed worrying about that. I know it's a fear that many parents have--whether they have a child with special needs or not--the fear that their child won't be included. It's an awful feeling. But you know what? The kids at school love him. They didn't care about his differences, they just saw that he wanted to play. So they play with him! Every single day they play with him. Curtis doesn't run as fast as them or jump as high as them and he can't swing on the swings like they do and he can't go across the monkey bars. He might never be able to do those things, I don't know. But he knows how to play with toys and he can play make-believe and, yes, he even finally has the guts to go down the slide!

EVERYBODY PLAYS!

I really think we need to start shouting this from the rooftops, people. It's time.

Here's a little video that was put together that includes some of the images and some short videos from the day of the shoot. Look at all the beautiful kiddos! Watch them play. When I see Curtis in it, I cry. Proud mama kind of cry.

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Let me end by sharing my thoughts about Kelle Hampton, the photographer for the Everybody Plays campaign. I've been following her blog for about 3 1/2 years now. She is an advocate for children with disabilities, especially Down syndrome, as well as a well-known blogger, photographer, and author. So I have read about her life--which is kind of weird, right? So then there's this question--is she really how she seems on her blog and in her book? I can tell you that in real life she was sweet, gentle, caring, approachable, and friendly. My boy took her hand and walked with her like he had known her forever. And that says a lot!