Tuesday, March 25, 2014

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.





Tuesday, March 18, 2014

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.


Wednesday, December 18, 2013

Overdue December Update

I just realized that I never updated after my last "vent" post.
So we had the meeting and I think it went well. 
The good news: there is a new OT at the school and so far I like her A LOT. She seems really with it, on top of things, etc. Complete 180 from the other OT so far. She totally agreed with me about the handwriting goal and said she was "surprised that he didn't already have one." We added it to his IEP. Boom. Just like that. Easy-peasy. Yay.
In the end, I didn't push adding extra hours of OT because they showed me that he was already almost caught up on hours. I have the OT's email and she responds when I email her (something that never happened with the other OT) and see I her around the school (also something that never happened with the other OT)...I'm feeling comfortable with her and with the team's promise that they will "stay on top of it". Trust me...I will keep on them! 
Curtis' speech therapist came in and said that he is doing great. She is going to do a formal evaluation on him in a few months and we are all meeting again to review that evaluation. It is her belief that he will be ready to be released from speech. I have talked to some friends who have kids or have had their kids in speech and they have mixed feelings about this. If anyone has any advice for me about this, please let me know. Curtis has been in speech therapy since he was a baby. On the one hand, I think I'm almost afraid to let him leave speech therapy. Like--what will he do without it? Will he be OK? And on the other hand, I think--WOW, look at him! I never in a bazillion years thought he'd make it this far. To think that we went from being told he may never speak, to having him bounce out of speech therapy before he starts elementary school. It's really unbelievable.    
His preschool teacher was at the meeting. I had told her a few days before that I didn't think she needed to be present at the meeting, but now I'm glad she was there. She really backed me up on a few things, which was great. She also piped in that Curtis' social skills were really "blossoming" this year. It's always nice to hear things like that.
We are all meeting again in a few months. That is when we discuss the speech eval and I think we might also have an early chat about kindergarten. I did ask if they thought he'd be placed in a kinder class at his brother and sister's school. Unfortunately, they can't really say--it's all a matter of what is best for him and every school in the district has something a little different in terms of what they offer for kids with special needs. Of course I want the best fit for Curtis, but I'd be lying if I said it wouldn't be a huge disappointment for him to be at a school other than our "home school". His big sister, especially, would be devastated. We'll cross that bridge when we get there, but we are getting there so soon! EEK! Unreal. 

Other news: Curtis is still swimming, although he's been sidelined a few times by ear infections. I have to be more diligent about putting in swim ear drops after his lessons. He has had outer ear infections, or swimmer's ear. They clear up fast, but are no fun while they are there. He is still working on his front breath and they are also now working on teaching him some elementary back stroke since he is so good at floating on his back! 



A few other photos just for fun--


 Here he is giving Santa his detailed list...

Somehow caught my cutie all alone on the steps after we saw Santa and got this shot...

 I hope everyone has a great holiday!

Monday, November 18, 2013

The Handwriting Saga

I'm going to warn you in advance that this is a bit of a
vent post.
I was worried that the day would eventually come, I just wasn't expecting it to happen so soon. The proverbial ball has been dropped, and, unfortunately, Curtis is one of the kids that is affected. 

Here we are in the middle of November and Curtis' occupational therapy (OT) through the school district has been lacking, to say the least. As you might remember, his school unfortunately lost their amazing occupational therapist at the end of the last school year (she moved to another state, such a bummer!) I had high hopes that this school year would be OK, however, as I knew she had left detailed information about Curtis and all the other kids she worked with. Apparently, the transition wasn't so smooth. I received word from Curtis' preschool teacher about 6 weeks ago that he wasn't being pulled from class for his OT services. Or, at least not as frequently as she thought he should. When I questioned Curtis' case manager about this, she emailed the therapist and asked her to get in touch with me with more information about his OT schedule and how everything was going. 

What I heard back from the occupational therapist didn't sound very promising. At all. She told me she had "scheduling challenges" and that he did "not have a consistent OT service time". Apparently, due to multiple assessments and meetings, she had missed service times for the children needing therapy--including Curtis. Wait...WHAT?? Most of his OT support was, in fact, being worked in with his motor lab time, I was told. ("Motor lab" is where Curtis goes twice/week before school to work on gross motor activities--it's like physical therapy/physical education). I'm fine with them doing both fine and gross motor activities during motor lab, but I'm not OK with them completely replacing traditional OT with this combo of OT and motor lab. Especially without my consent. This type of OT is so not what was planned when I signed his IEP last May. And it is so not the same kind of OT he has had the past two years through the school district. 
Honestly, all I can say about this is, "What the hell is going on here? How can they suddenly make these changes? And how is it that it's now been 3 months into the school year and there is still not any sort of OT schedule for my child? How is this acceptable?

In the meantime, Curtis has become very interested in writing letters. I shouldn't really say "in the meantime"--he's been interested for several months, really, but he's become obsessed with it recently. He tries to write his name pretty much any chance he gets--he does an OK job, but requires quite a bit of help. In his preschool class, they are starting to work on writing their names and working on the basics of holding a pencil properly and have even started to keep their own little journals where they can practice writing their name and draw little pictures. Great, right? Yes--except when Curtis' teacher showed me his journal, she expressed some concern. I guess there was a page where they were to write their name and Curtis' just looked like scribbles. I could see some attempts at letters, but no one else could probably notice that the thing in the corner was a "C" or that the scribble to the side was supposed to be an "S". Her reason for concern? Well, she said that Curtis could do better than that last year. My child is regressing? Is this from lack of OT? I don't know. Maybe it's just a coincidence. Maybe I'm crazy, but I'm also upset. Angry, yes, but mostly just sad. OK, that's not true. I'm pissed. I guess I'm both.

I don't have a photo of the journal. I wish I did, but I don't. You wouldn't see much, anyway. Just scribbles.

I do have this picture--
"Curtis"--written by Curtis, with help, on 10/3/13. It's not bad, but he needed help with the C, starting the U, and the entire S. (that's a donut above his name, by the way, heehee)

Back to the story...and this is where it gets silly...

Before his teacher even showed me the scribbles in the journal, I had emailed Curtis' case manager and asked if we could get the therapist to help him work on handwriting skills. So the afternoon after I talked to the teacher about the journal, I heard back from the case manager. That's when I got the news that the new OT is no longer at the school! She's gone! She "didn't work out." Really? Well, that's a shocker. Now there is another new OT. Awesome. So, what does this mean? Will she have to evaluate Curtis before anything gets done? If so, how long will that take? And how long before she can get a "consistent OT service time"? UGH! I'm taking deep breaths and hoping for the best. No, really, I am.
**deep breaths**
Realizing that all of this could take a long time, and Curtis could be sitting around waiting to be taught, I decided that I had to step in and do something. So Curtis and I (and his big sister, the little teacher-in-training) have spent the last few weeks using a great iPad app called "Wet, Dry, Try" from the Handwriting Without Tears (HWT) program (a great, great program!).

Some photos of Curtis practicing an uppercase "I":

 


 


I also bought some of the supplies (little chalkboard, chalk, My First Schoolbook, and Teacher's Guide) from their website so I can start working with Curtis at home while the school system gets "situated", shall we say. I'm really, really hoping that Curtis can go to kindergarten next year and I really don't see why that dream can't come a reality for us without continued, consistent hard work. True, he will likely need the assistance of an aide--in fact, it's something that I want for him considering his physical limitations--but Curtis should be able to do many of the things the other kids in a mainstream class are doing. And I believe that one of those things is writing letters, numbers, and his name. Definitely his name! And the fact that he is practically begging to sit and learn to write--we have to teach him! I'm not an occupational therapist, nor a teacher...but I will try my best to do what I can.

Videos of Curtis using the app...






I have to take a quick second to say that I'm so grateful that Curtis has such an amazing occupational therapist through CCS--she has really helped us these last few weeks (no joke, Curtis has been crazy obsessed with trying to write letters and his name). Even though they are not supposed to work on school-related therapy needs, she has allowed him to work on it a little bit during their therapy time each week and she has told me what she knows about the HWT program, she gave me suggestions for what items to buy from the website, and she even let us borrow a CD with songs about writing letters that she has from the program. She's really great.

So Curtis has been using this app for about 2 weeks, and here is an example of how he wrote his name yesterday--and he wrote it all by himself!! Big sis had him write it in 4 different colors :)
See those uppercase "R"s? He had never attempted one before the HWT app came along. Now I guess he's some sort of pro at them. The "U"s with the little line coming down are still my favorites, with the "i" coming in a close second :) I think he's doing awesome. I can't wait to see how much he improves after we get the set in the mail from the HWT program! 

So back to the school situation...I've already told the case manager what I want for Curtis in the months to come and we are working on getting a date set for a meeting. Since he's missed so much therapy so far this year, I want them to double his therapy (going from one day/week to two days/week--mind you, he wasn't even doing one day/week). I don't want all of his OT combined with motor lab. I want him focusing on writing skills (while working on other fine motor skills, as well) so he can work along with his peers in class and be prepared for a kindergarten setting. Curtis is ready to learn and to be taught. It's time for them to be ready to help him. Enough with the inconsistent schedules and the lack of time for the kids that are there because they need their time. Enough. Get it together.   

I don't think my requests are unreasonable. I don't think I'm asking for too much. Do you?

I'll keep you posted on progress and how the meeting turns out. Wish us luck! 

Thursday, October 24, 2013

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!  

Tuesday, October 1, 2013

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!

____________________________________________________________

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.


____________________________________________________________

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!

_____________________________________________________________

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.

Sunday, September 22, 2013

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!