Battle of the Brace

“I hate this brace.” 

“What do you mean you hate it?”

“I just hate it. I hate wearing it. I just want to be normal—Like the other kids.” 
And my heart breaks. 

“Wait, buddy, did someone say something? To you? About the brace?”

“No. I just hate it. I hate that I walk different.”

I have him come over to me and I pull him into my arms. I rest my chin on top of his head...

“OK. I know. But you know we are all made different, right? So you are made different than me. I’m different than JoJo. She is different from her friends. So, really, it’s normal to be different. And having a brace is just your normal.” 
I pull him in closer. “You’ll be OK, lover.”

“OK. But I still hate it.”

He walks away. 

And I get it. I hate it, too. But it’s not the brace I hate. I hate that he feels like his “different” isn’t “normal”. We all feel that way about something about ourselves at some point, don’t we? (Or maybe at many points). But for him, I know it will be an uphill battle. 

I hate it. 

I hate that because he can’t run as fast as the other kids or because he doesn’t walk the same way, he feels like he belongs in a separate category. Normal vs not normal. I hate that people will judge him and make assumptions about him. 

I hate it because I look at him and I just see my little boy. Different, yes. But he’s mine. 

And, besides...we don’t really mind different over here. 

Actually, we love it. 

**It’s been almost a year since Curtis’s cast came off after surgery and he is still in his AFO almost 100% of the time. He is soon to be 10 years old (yikes) and we anticipate that after this brace, which provides a lot of stabilization for his ankle, he will transition into a carbon fiber AFO for his drop foot. So...we will need to "embrace the brace" for a while longer.

New Gear

I have a lot on my mind, folks, and we are already heading into the second week of May! But I want to first share Curtis' new leg brace since I have discussed it in previous posts but have never shown it. 

I'll start by explaining what it is. It's called an AFO, which stands for ankle-foot orthosis. The main job of Curtis' AFO is to prevent foot drop, which was causing him to trip and fall on his face (especially when he was tired). Curtis only wears the AFO on his left leg/foot.

The process of getting his leg casted was easy-peasy. I only took a few photos because it went by so fast! They wrapped his leg up in a cast using fiberglass tape (just like you would if you broke a bone), set his foot in the position they wanted, let it set for a few minutes, and cut it off. Done! He sat watching the orthotist's iPad the whole time and wasn't bothered at all.

Wrapping the leg with fiberglass tape

Cool as a cucumber

Cutting the cast off

A few weeks later it was ready. It was a lot bigger than I expected and the whole process of getting it on is a struggle, I won't lie. But so far it's doing its job and Curtis isn't complaining about it too much so I call it a success. 

The kids at school asked about it the first day he wore it and he just said, "It's my brace." (Like...duh!) They didn't ask any other questions. Kids are awesome like that.  

All About CP

Today, March 25th, is National Cerebral Palsy Awareness Day. The entire month of March is actually Cerebral Palsy Awareness MONTH. I wasn't even aware of this until recently! It should be easy for me to remember--I've always loved March (it's my birthday month), and now I have one more reason to be fond of it. 

I had another short post I was going to write tonight (about Curtis and the process of getting his leg casted for his new brace), but then I stumbled on this great post over at one of my favorite blogs--Love That Max. I thought I'd do something similar, but I'll include a little more info about Curtis. And I'll try to keep it short! If you have the time, read her info, though--it's awesome. She has a great blog in general, so if you're a parent of a kid with special needs, I think she merits a follow on FB. 

I think that, in general, people know very little about cerebral palsy. Most people are shocked when I tell them that Curtis has CP. I was shocked when I was told Curtis had CP. Learning more about it is a good thing. I try to explain it to people on the fly, but I don't do a very good job. I'm still learning a lot about it, too. What you read below will be much better info (said info gathered from various sources around the fabulous World Wide Web)... 

• Cerebral Palsy (CP) refers to any number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and the muscle coordination necessary to maintain balance and posture. 
• CP is not a disease and it's not genetic (can't be passed from parent to child). 
• CP is caused by damage to one or more specific areas of the brain, which usually occurs during fetal development, before, during, or shortly after birth, or during infancy. Curtis' CP is the result of his brain malformations--cortical dysplasia and polymicrogyria. Both were present at birth. The CP wasn't diagnosed until several months after birth.
• 75% of people with CP also have one or more developmental disability, including epilepsy, intellecutal disability, autism, visual impairment, and/or blindness
• The CDC has released information indicating that CP is increasingly prevalent and that about 1 in 278 children have cerebral palsy (wow!) It is the most common motor disability in childhood.
• There is no cure for CP, but treatment often improves the capabilities of a child with CP (now you know why Curtis spends so much of his free time in therapy--and swimming, which has become a new sort of therapy for him).
• The symptoms of CP vary from person to person. A person with severe CP might need special equipment to walk or might not be able to walk at all. Those with more mild CP might be able to walk, but just need a little extra help (this is the category Curtis would fit in). 
• There are different types of CP, and they are classified based on the type of movement disorder involved:

1. Spastic CP: Most common type of CP (approx. 80% have this type). People with spastic CP have increased muscle tone. This means their muscles are stiff and, as a result, their movements can be awkward. It's usually further described by what part of the body is affected. Spastic diplegia: muscle stiffness mainly in the legs making it difficult to walk. Spastic hemiplegia: affecting only one side of the body--the arm is usually more affected than the leg. Curtis has Left-Sided Spastic Hemiplegia and both his arm and leg are affected, as well as some of the muscles in his face and mouth (hardly noticeable in his sweet face!). Spastic quadriplegia: most severe form of CP, it affects the legs, arms, trunk, and face.  
2. Dyskinetic CP: People with this CP have problems controlling the movement of their hands, arms, feet, and legs. Their muscle tone can change--varying from too tight to too loose. 
3. Ataxic CP: People with ataxic CP have problems with balance and coordination. 
4. Mixed CP: Some people have symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic.  

• Crazy, random new fact I learned today (and no wonder Curtis is always so tired...and why he still naps at almost 6 years old!)--people with CP use three to five times the amount of energy that people without CP do when they walk and move. 

OK, I could go on and on. I promised I'd keep it short. I think I gave you your fill of cerebral palsy info for the day. 

Before I had Curtis, the idea of cerebral palsy used to freak me out. When they first told me Curtis had CP, I was completely freaked out! But now, on CP Awareness Day, I don't feel afraid. I am more educated. I have Curtis here with me, showing me what can be achieved. I feel hopeful. Curtis has a lot he needs to work on (geez, don't we all?). I can tell you that we won't stop working. It's what we do. Because Curtis--he's worth working hard for...today and every day.

Brace Yourself

Is it March already? I guess so.
I guess I kind of suck at this blogging thing. I usually think about posting in the middle of the day, when I'm away from the computer, out driving the kids to one of their after-school activities--and the next chance I get to actually sit and write is around 10:30pm, when all I want to do is crawl into bed and sleep. I don't see my days getting any less busy in the near future, but I will try to keep the updates coming.

Let me start by saying that 2013 ended well. We had a great Christmas with family and a fun New Year's Eve celebration with friends. We spent New Year's Day at the beach with our dog, eating burritos and watching a perfect sunset. Curtis loves the beach. And he loves burritos. If he cared at all about New Year's, I'm pretty sure he'd think it was the best ever.

We started January 2014 off with our 6-month recall visits at Rady Children's to see the orthopedist and the rehabilitation specialist. 

 

It's nice that they schedule the appointments back-to-back for us (and they are in the same room so we literally don't need to go anywhere between the two appointments), but the appointments still tend to be long. You can count on at least two hours to see the two doctors. I try to plan accordingly for these visits, but it just never works out. Curtis get bored and tired and upset. Generally, I don't let him play with an iPad or my phone, because when the doctors come in and ask him questions or want him to do something, he doesn't want to participate--or he throws a fit when I take the device away (we're still working on iPad etiquette...it's taking a long, long while). That leaves us with coloring, singing, talking, and whatever...for a long time. It gets boring (for him, at least) fast. Real fast.

 

drawing a bug or a monster--something with multiple legs

        

This appointment was no exception. Curtis was not happy from the get-go. He just wanted out of there. I think he just knows by now that he is going to be stuck in that room for 2 hours and he's just like, "no." Especially since there are residents that roll through and do the same things as the doctors and ask the same questions over and over. It gets old. But it's necessary and I understand that. He, unfortunately, doesn't.

Not a happy camper

 

In any case, after cruising up and down the hall several times to examine how he walks and much discussion with both doctors, it was decided that Curtis needed a brace for his left leg. It's going to be something that helps prevent his toe from dropping, which is something he's had trouble with in the past and is something he's starting to have a little trouble with again. I noticed it a few weeks before the appointment and mentioned it to the doctors. Once they had him take a walk down the hall, they noticed the toe drop right away and said that it wasn't too bad, but it was definitely something we should take care of. They did, however, sort of leave the final decision up to me. To brace or not to brace? In the end, I agreed that he should have it--he's taken some really hard falls in the past and I feel like if there's anything I can do to prevent that, I am all for it. He won't have to wear it all the time, but on days when he is walking a lot or when he's playing sports, it will be a good idea for him to have it on.  

 By the way--check it out! Little dude had his first soccer season!!

I won't deny that I instantly questioned my decision. Does he really need this thing or not? UGH! 

So the appointment was done and they sent us off...we will go back in 6 months for another recall visit...

And then Curtis and I cruised around the grounds of Rady Children's (it's kind of a cool place and he wanted to play a little)...

His favorite--the "Incredible Circus" ball machine

 

Frog King--he'll only get this close

Aargh Matey--captain of the ship!

And then, folks...something happened. A sign from above, if you will. Curtis tripped over his own feet. He bumped his head. He cried. He got a red mark on his forehead. And, with that, my previous concerns went away. I no longer question my decision about the brace. It sucks that he has to have it, no doubt, but he needs it. No more boo-boos like this, he's had too many of them in his lifetime :(

Not the best photo, but all up near his hairline it was red

What a busy morning we had...

I'll be sure to show off the new foot gear once it's made. We go in this Friday to get a casting made of his foot/leg since the brace is custom made for him. I'm not quite sure how long it takes after that. 

In other news, a few weeks back I registered Curtis for KINDERGARTEN! Holy moly! Excited, nervous, freaking out, happy, scared, (did I mention FREAKING OUT?). Yeah, it's crazy to think that he's almost there. Very crazy. I'm excited for him.

Swimming update

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!  

Photo Shoot Wrap-Up--Everybody Plays

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!

Kelle helping Curtis up the steps

Us+Kelle after the shoot

Thank you, Kelle, for being so sweet with my little man.

Becoming Beast Boy

I haven't posted in a while. It's not because there's nothing to say or write about. It's because I'm still trying to adjust to the kids being back in school and their after-school schedules and the homework and everything else. Yes, it's sad, I know. They've been in school for a month, I should have this figured out by now. But I feel like I don't have free time for anything. And that is the complete and honest truth. Laugh if you must. I am getting better...I actually think that I have things under control now that I have bought a {HUGE} new desk calendar and have several note pads around the house to remind me of, well, everything. Fingers crossed. I never thought 2nd and 4th grade homework and soccer practice, swim team practice, (well, and therapy and swim and preschool for Curtis) would make me so messed up in the head!

The point is...the blog...and most other things...have taken a back-seat due to my frazzled nature. After the craziness of the day has worn off and the kids are in bed, all I can do is shower, eat, read one of the two books I'm currently reading (love them both!), and pass out. That's another problem, you see--I go to bed too late. Midnight, usually. Then up at 6:30am. So I'm tired and frazzled and usually pretty out of it most days. Or every day.

But let's talk about our boy...

Curtis has been fabulous. So much fun stuff has been going on with him, I really didn't know what to post about. I'm pressed for time tonight, and this is a busy week for us (in addition to all the usual stuff, we have parent-teacher conferences at my big kids' school--which means half-days all week--and Curtis has his Everybody Plays photo shoot on Wednesday!) I decided that I just had to talk about his new identity. I couldn't go another day without letting everyone in on it. 

Curtis is no longer Curtis. He is now Beast Boy. 

Beast Boy

Doesn't it look just like him? 

Beast Boy is a character from "Teen Titans Go!", which is Curtis' new favorite cartoon. If you've never seen it, you should. It's pretty funny. It's a continuation of the "Teen Titans" series, which first aired 10 years ago (this show is cuter if you ask me, but I'm not a superhero super fan so what do I know?)

And Curtis' dad (my husband) is no longer "Daddy", he's now Cyborg.

Cyborg

It's hysterical! The entire family actually has a spot on the show--there are 3 boys (Beast Boy, Cyborg, and Robin) and 2 girls (Raven and Star Fire), so it works out perfectly. But the only two that have had their names really stick are Beast Boy and Cyborg. Curtis, at times, will insist that we call him Beast Boy. During those times, he won't respond to "Curtis".

Example: 

 Me: Curtis, do you want some milk?

Curtis: Say, "Beast Boy, do you want some milk?"

Me: ???

Curtis: Mommy! Say, "Beast Boy, do you want some milk?"

Me: Beast Boy, do you want some milk?

Beast Boy: Sure!

And when he sees Daddy, he calls out, "CYBORG!", even if we are in a public place--he will yell it as loud as he can. Definitely has earned us some strange looks.

I'm not going to lie--there are times during the day when I roll my eyes. I do get a little annoyed having to correct myself 100 times during the day. I, at times, forget that my child is Beast Boy and not Curtis. Sometimes he corrects me and sometimes he doesn't. When he does, he's not always that polite about it (see above). He's also majorly obsessed with the TV show and will try to watch the same one over and over and over again--so I have to cut that off (obviously!) But, really, it's the cutest thing. I have to go with the flow here and laugh about it because it is just too funny. Big bro and big sis are getting a huge kick out of it, too. 

Sis made me take a video of him today while he was dancing at the beginning of his favorite episode (Burger vs. Burrito). See if you can hear him talking about how he's Beast Boy and Daddy is Cyborg. Turn the volume up so you can hear his little voice over my loud one!

I wish I had more videos of him as he did his Beast Boy and Cyborg activities during the day. I don't use the video camera feature on my phone enough! I'm glad sis convinced me to shoot this today. 

I bet you can all guess what he wants to be for Halloween. And of course there are NO Beast Boy costumes out there. Homemade costume? Say it ain't so!! Probably one for Cyborg, too. AHHHH!!!!!

Have any of you had a child so obsessed with a character in a TV show or from a book or from...anywhere? My other kids have loved shows and movies before, but I don't know if either of them were ever quite like this. It's new to me. 

It's time for the little beast to go to bed, so off I go.

I really, really want to show you all his new swimming trick. I need video of that, though, so bear with me. I have to plan ahead and bring my video camera so I can get a decent video. Hopefully this week! He's been working hard and making a lot of progress--working on taking a breath--but in a "special" way. Stay tuned!

Everybody Plays!

"We’re all different. And we think that’s beautiful. Embracing the beauty of our differences can help promote acceptance and inclusion for all kids across the world. The Everybody Plays Campaign celebrates the unique faces, smiles and styles of babies and kids everywhere." ~Infantino  

I mean, what a concept, right? 

I remember hearing about this when they first started the "Everybody Plays" campaign and thinking to myself, "Why does this even have to be a 'campaign'? Why have they (meaning advertisers everywhere) not been doing this forever?" Babies, toddlers, and kids of all abilities play with toys. Let's celebrate that! 

So, they haven't been doing it forever, but the awesome folks at Infantino and Step 2 started their Everybody Plays campaign in 2011--which is awesome. Basically, they get a group of kids--some with special needs, some without--and let them loose with their new line of toys. Well-known photographer and blogger, Kelle Hampton (who just happens to also be the mom of a beautiful little girl with Down Syndrome) then photographs the kiddos. You can read her blog post about the last campaign she photographed HERE (it was actually photographed at a house right in our little city!) Anyhow, they then use the images for advertising purposes--packaging, social media, trade show booths, etc.

So here's the thing--each year, they have done a casting call for the photo shoot for the campaign. And the company is based here, in San Diego. I don't know why I haven't paid any attention to the casting calls before, but this year, I did. I submitted a photo of Curtis, along with 300 words (or less, ha!) describing how I teach self-acceptance and the acceptance of others within my family and/or in our community. That was it. I can't even remember what I wrote. Something about Curtis and about how we found out about his brain disorder and CP and how I've tried to teach my kids about him and other kids like him. About how I've tried to be more aware of kids (and adults) in the community with disabilities and how I'm trying to get my children to understand that everyone is different--to learn that sometimes the difference is something you can see, sometimes it's not. Gosh, I think that's what I wrote! If not, it was something similar. It was short and sweet. It had to be!

Long story short--they chose Curtis to be part of the shoot. Honestly, I couldn't believe it. I knew there would be a lot of submissions...and there were. Over 800 of them, I found out. Curtis was, I believe, one of about 50 kids that they chose to participate. I'm hoping it will be a fun experience. If anything, he will get a few hours of play time with some kids and a few new toys. I'm feeling pretty excited, and honored, that Curtis gets to be one of the 'poster children', if you will, for a campaign that I think is so cool.  

What do you think? Could he be the next big thing? :)

I kid, I kid. But he is a beauty, if I do say so myself...totally not biased or anything...

One more year

Ever since his last day of preschool, Curtis been asking when he gets to go back to school. Today the day finally came! He was so excited. I couldn't even get any good photos because he didn't want to sit or stand still. Every photo I took with my phone came out blurry. 

With big bro and big sis before they took off for their first day--also today.

Luckily for Curtis, he is at the same preschool, with the same main teacher, in the same classroom, and with most of the same kids. So the transition to pre-K, at least on this first day, was not huge. There were no tears. I didn't have to show him around. Or make any introductions. Everything was familiar and comfortable--for both of us. It was nice.

He picked out his shirt--"Kabooom!" I think he was ready to go, don't you?

When I picked him up, he was happy to see me. "Mommy!" he yelled and came running up to me, collapsing in to my arms. It feels so good to still be needed...my big kids don't do that anymore. He had tired eyes. I almost thought for a second that he was going to cry, but he didn't. I was worried that a busy day of fun and play and a new routine might result in a potty accident (or two) during the five hours of school, but that didn't happen, either. So proud of him. He really is my big boy. My little boy, always--but my big boy, too.

I've been thinking about this final year of preschool (pre-K as my big kids insist on calling it) a lot in the last few weeks. I'm trying not to stress about the fact that kindergarten is only a year away. ONE YEAR. Twelve months. It seems like a long time, but is it? Is it enough time? Will his social/fine motor/gross motor skills all be "just right" for him to be in the "regular" kinder class at his big brother and big sister's school? 

Sometimes it's hard to take notice of how much our kids have grown and changed in a year. Of course we can measure physical growth--pants get too short, shoes no longer fit, and belly buttons poke out of shirts...all things that let us know that they are getting bigger, taller. I remember seeing cool photos people posted on Facebook and Instagram last June that showed side-by-side images of kids on their first and last days of school.  Some of the physical changes in the kids were really extraordinary. How can 9-10 months change our little ones in so many ways? They lose their baby fat, they earn more freckles, their hair gets longer or they change it completely with a new cut. They are different. You can't go back--they are forever changed. Even seeing photos of other people's kids go through this transformation amazes me. It just goes so fast. That old saying that everyone warns you about. Oh, the truth.

But what about the other changes? All those things you can't see in those first and last day of school photographs: new social skills, maybe some physical challenges that were overcome, and how much they learned in school that year. When I start to worry about next year, I tell myself to think about Curtis and this past year of preschool--I feel like I have to keep reminding myself how much he grew and changed during that year. And I need to focus on the idea that similar changes and similar growth will likely occur this coming year. His "pre-K" year. This is not to say that I will become lazy or that I will stop paying attention to his progress. His therapy--speech and OT, at least--have been cut in half at school this year, based on how great he was doing last year. But what if he isn't doing quite so well this year? Something will have to change. I want to make sure he is doing as well as my other two kids by the time they were entering kindergarten! If I feel the need to push for more of anything, I will. If he needs more "work-at-home" help, I'm there.  

Anything. Whatever this boys needs to get him prepared for mainstream kindergarten, I'm there. Always.

And that is not to say I'm opposed to the other school options--kinder with the help of an aide, kinder at another elementary school within our public school district, placement in the special day classroom at our school, and, possibly, private education. I'm not opposed to any option! I've always said that whatever is best for my boy is what we will do. 

I won't lie--the thought of him going into kindergarten puts a feeling in the pit of my stomach that I can't describe. It's like nothing I've ever felt before. I don't know why. Am I worried that he won't succeed? That he won't make friends? He's already proven that he can do both. So I think that while I need to be cautious, diligent even, when it comes to his learning and "skills" during this year of pre-K...I also need to let him go about his business. I need to let him grow. 

He still has one more year.

KA-BOOOM!

And then he cried...

We just returned from our amazing annual summer trip to Montana to visit my aunt and uncle. I shouldn't really say "just" because it's actually been a week and a half. We came home exhausted and out-of-sorts, but in a good way for once. And then my daughter was hit with a nasty stomach bug that I later got. Anyhow, it took us a good week to get back into the swing of things. I'm just now looking back at photos and remembering the trip.

Curtis loves these trips. We have been going every summer since Curtis was a year old--the year we rented an RV and drove from AZ to MT and back again. A crazy fun road trip we took with three kids age 5 and under and no idea what we were doing!

That year, we picked raspberries, swam in the lake, drank huckleberry milkshakes, ate every meal outside, went fishing, took rides in my uncle's boat, collected eggs from the chickens, and watched the sunset over the river. It was amazing--for both adults and kids--and we quickly decided we needed to go back every summer. And we have. The following years have included my parents, as well.

So what is it about these trips that my little dude loves so much? What sets them apart from, say, our annual trips to Hawaii? (Tropical paradise--hello?) 

There is magic in Montana. Curtis knows it. He knows that the second he gets off the plane, he is going to enter a world of adventure. Of the great outdoors (he loves to be outside). Of being surrounded by his favorite family members--grandma, grandpa, aunt, and uncle. Of late nights eating ice cream with raspberry sauce made out of berries that he helped pick. Of racing little speed boats with his favorite uncle. Of throwing rocks into the river with his grandma. Of taking mid-afternoon naps on the couch with mommy. 

Something changes in Curtis when we go to Montana. Curtis comes alive. He blossoms. It probably sounds totally corny and cliche, but it's true. There are fewer tantrums. Less fighting with siblings. Less arguing with mommy! He doesn't fight naps, but rather asks for them. He's willing to try things that my normally timid, cautious little boy would never try--paddle boarding!? Who is this kid? I love it! One day I imagine him trying (and succeeding) at wake boarding or knee boarding or waterskiing. I can picture him in a few year's time going out on the river on the paddle board all by himself, just like his big brother and sister did this year for their first time.  

It will be awesome.

sprinkler fun

 

just hanging out--in the middle of the lake

 driving the remote control boat

 power nap

 

 running down the hill

ice cream break

This year, when we were heading to the airport, my kids kept saying they didn't want to leave. None of us did, really. Who wants to go back to "the real world" after a lovely vacation? When it was time to say goodbye to my aunt and uncle, however, something happened that has never really happened when leaving Montana. Curtis cried. Like, lip quivering, needed to be held and consoled type of cry. He was genuinely sad to leave them, and Montana, and for this time to be over. And that was when I realized just how much he loved this trip and his family and just how special it all is to him. I had to choke back tears, myself. 

I will never again take this little family trip for granted, for I now know the joy it brings to my boy. If it makes him happy, it makes me over-the-moon. 

drinking his "soda 7" as he calls it ;) only on vacation!!

The Power of "The Bigs"

A few days ago I went outside and caught a moment...

and it made me start to think about Curtis and his big brother and big sister and the part they play (and have played) in his life. I've been noticing it a lot more this summer--how much he wants to be around them and how much he talks about them when they aren't around. Yes, I know in my last post I talked about the sibling rivalry and how it was in full force--we are battling those issues, as well. But mostly he loves them and talks about them and follows them around constantly.

I can't really say that I understand the whole sibling thing because I'm an only child. I don't know what it feels like to have older brothers and sisters (or younger ones, for that matter). What is it like for a baby, and then a toddler, and then a young child to have older kids around all day? Do they learn faster? Talk at a younger age? Walk sooner? Or does it not matter? And what about for a special needs child? Are there any benefits for these kids to have an older sibling or siblings?

I remember when Curtis was tiny and we were still working our way around his diagnosis and trying to figure out when he would would walk/talk/do most things. One doctor told us, "Having older siblings will help. He'll want to do what they do. They will motivate him." I think he was right.

Curtis has had these two little people in his face--literally--pretty much every day since the day he was born. Always touching him, grabbing him, wanting to hold him. He rarely had a moment to himself. He was no doubt watching them, soaking in every moment, every movement, every word--all of it.

 

(big bro holding on to his left hand--I die)

 

(big sis--teaching him the first of many naughty tricks!)

Did watching them run down the halls give him the drive to want to start walking sooner than he may have without them around? Did hearing their non-stop chatter encourage him to try to speak even though it would take years of speech therapy before he'd be able to properly form words? I can't find any scientific info that says yay or nay, but I honestly think the answer, in our case, is yes. I also think he learned and wanted to jump, ride a tricycle, play on the computer (ugh), read books (yes, he is actually starting to identify a few sight words already! crazy!), swim, play soccer and t-ball in the backyard, and do many other things all because he saw his big brother and/or big sister do it. I will spare you the list of not-so-pleasant things they have taught him--equally as long, I might add. Would he have wanted to do these things and/or learned to do them without having an older sibling? Probably. In the case of walking and speaking--definitely. But I think having his big brother and big sister around sped the process along. 

Here's a short video--Curtis at age 2.5 playing at our local YMCA splash pad after a few days of convincing by big bro and big sis. As you can see...he loved it! Not sure Mom and Dad could have made it look quite as fun...

 There is not a day that goes by that Curtis doesn't want to play with his older brother or sister or at least do something they are doing. Like I said before, he is always asking about them and their whereabouts if they aren't home. This summer I have really noticed how much he relies on his siblings. He doesn't really ask me to play with him anymore--he wants one of them to play. I'm a last resort. I've also come to realize how much he depends on them and how much he actually wants them to be around! During the weeks when they were at camp, he really only put up with me until they got home. When it was time to pick them up, he would literally cheer in the car, "Yay! Yay! Yay!" And then five minutes later they'd be fighting, but still, the sentiment was there. He loves them!

Luckily we are at an age where Curtis' siblings will still tolerate playing with him most of the time. Big sis likes to play with him if she is boss (she is teacher/he is student or she is mommy/he is kid type of games). Big bro is happy to go outside to play or to build blocks/puzzles/Legos. There are, of course, times when they don't want him around, and he is genuinely saddened by that. Usually, I am a good substitute, but I won't always be. My hope is that he will have other friends to call upon when that time comes.

 For now, I'm just happy that Curtis has his Brub and Jo, as he calls them. They really are his everything. They were his first friends. They taught him how to play and be a kid in ways that I probably would not have if they weren't around. They get him to take risks, or shall I say, make him do things he doesn't necessarily want to do. But, as pissed off upset as I am when they make him do such things, I now realize it's OK...because I'd likely never make him do those things had they not been around! Sometimes Curtis needs to take risks and who better to lead the way than Brub and Jo? They really are perfect for him in so many ways. They snuggle him when he needs it, they cheer him on, they are not afraid to let him know if he is invading their personal space (everyone needs boundaries!), they praise his hard work.

  

 

But most of all, they love him. Unconditionally.

• Do you have a special needs kid with an older sib? If so, do you think that older sibling helped them in any way?