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!

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! 

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?