School Daze

I am happy to report that we are done with week 3 of kindergarten! Curtis is a happy camper. In turn, mama is also a happy camper.

Here are some photos from the first day of school--

(many are repeats if you follow us on Facebook or Instagram) 

 Curtis meeting his kindergarten teacher...

Testing out his new playground...

Below is a photo from his first ever "Circle Time" in his kindergarten class. The parents were allowed to stay in the back of the room while the teacher read a book to the kids. The story was "The Kissing Hand", and it was impossible to hear the teacher read it without getting tears in my eyes and a huge lump in my throat. In fact, I was cussing her out under my breath. I wasn't alone. Curtis is in class with a few kids whose moms are my dear friends. We looked at each other with frowny faces and red eyes. These are our babies--the youngest of three kids for each of us. We wanted to run out of the class so they wouldn't see us crying, yet at the same time wanted to savor this sweet moment--to cherish every last second and stay in that room as long as we could before the last "goodbye" and hug. When the story was over, the kids were allowed to come and give us a kiss on our hand so we could keep it with us all day. Curtis choked up for a second when he said goodbye to me and I thought I was really going to start sobbing in front of everyone. I thought he might lose it, too. But then he turned around...brave boy...and he went back to his class. And I turned on my heels and bolted out of the class so neither one of us could look back.

And then...6+ hours later...we were reunited. I could not wait to get this boy back in my arms!

So how have the first 3 weeks of kindergarten been for this boy? Mostly FABULOUS. He is always all smiles when I pick him up. We have had great reports from his teacher (whom I absolutely love so far...thank GOD). The school staff is AMAZING, and SUPPORTIVE in any and all ways that I could ever have hoped for...I am so grateful for all of them. 

 I won't lie to you, though. We have had some issues. #1--we've had a few potty problems. We (teacher, nurse, supporting staff) all are still thinking that it's adjusting to new routines. The teacher and the rest of the staff are working on reminding him to use the potty. I'm working on limiting drinks before school and having him use the potty prior to heading off to class. Fatigue could also be a factor. This leads me to the next problem...#2--he's tired. Just exhausted and in a daze at the end of the day. And a sleepy Curtis is a grumpy Curtis and a grumpy Curtis is not a fun Curtis. By the time we walk home he is often crying and/or screaming at me and/or his siblings. It's a mess. With after school activities we really don't have time for naps anymore. It's an adjustment. We're still working on it. 

As far as class work goes, he seems to be doing OK. We have a formal meeting coming up in a few weeks. It's his 30 day review, and I'll be meeting with his teacher, therapists, and case manager to see how he's doing. I know he needs A LOT of work on his writing still. I see the sheets that come home and I know they are already working on it with him, but he has a long, long way to go. We are still working on it at home a little, too, when I can get him to cooperate with me. He always works much better with his therapists!

Here is a little project he worked on during the first week of school. It's a house depicting the members of his family: light blue=dad, green=mom, purple=sister, blue=him and his brother, yellow=his pets (he only included the cat and dog, no room for the 7 chickens).

So--during the second week of school I received an email in the middle of the day from his teacher. She wrote to tell me that they pulled the tricycles out during recess. The only problem? Curtis' seizure action plan has a note stating that he must wear a helmet when riding a bicycle (or a horse!). So...Curtis was not allowed to ride the tricycles and I needed to bring in a helmet for him to use at school. My initial thought? "This is crazy! It's a tricycle!" 

The seizure action plan form that his neurologist filled out had a few things that were pre-set, standard items already filled out on the form. Examples: "always wear a helmet when riding bikes or horses", "never leave alone in water", "don't linger in high places". I did not think that "bike" included tricycles. I mean...how far is he doing to fall off a trike?? Nonetheless, I know the school rules and told them I'd call the neurologist and hopefully they'd send me a note saying he could ride a trike without a helmet. What was my big deal? I didn't want him to be the only kid on the playground wearing a damn helmet! Sounds stupid, but, yes, that was it. I just really would rather he not stand out in any way if at all possible. However, in the meantime, I sent him to school with a helmet. He loves to ride trikes and I didn't want him to miss the opportunity the next day while we waited to hear back from the neurologist! (See below...in our driveway on his own trike.) 

So I left a voicemail with his neurologist and a day later heard back from her assistant. Here's the deal--she DOES want him wearing a helmet. Even on a tricycle!! 

Wow. Lesson learned.

Here he is at home...now wearing a helmet at all times on his tricycle!

More fun happened during that second week of school! We received a call one morning that Curtis was stung in the face by a bee. He went to the nurse's office and said he felt OK to go back to class but they called to let us know it happened. I'm proud he was so brave to stay in class!  Not sure my older kids would have chosen to do so!

This is a photo of him from later that night--he was stung right below his left eye. You can see how it was starting to swell up later that night. 

So...the next morning when he woke up it looked like this!! YIKES!!!

We decided it was probably best to not send him to school looking like this. He went to the pediatrician in the morning and checked out OK and ended up back at school at around lunch time. It took a good 4 days for the swelling around that eye to go away. Terrible!! My poor buddy!

As if things haven't been crazy enough with trying to adjust to new school schedules and running around AFTER school with big bro and sis to all their stuff--Curtis just decided this week that he absolutely had to get back to swim lessons. I agreed that he was long overdue! We have been meaning to get him back for weeks now, but couldn't figure out how to work them in. Well, there's no time better than the present, and we squeezed those lessons in. Thursday was his first official day back at Callan Swim School and he did great. All the swimming at grandma and grandpa's this summer surely helped!! 

{Sorry, no swimming photos--next time!}

We are ready to tackle week 4. I think every week is just going to get better and better. Will we/he figure out the potty issues? Yes, (god, I hope so!). Will the fatigue and grouchiness go away? I think he's still just adjusting so, yes, I do think it will. The academic stuff? Handwriting and whatnot? He is finally starting his therapy services and I just know that I will start to see a huge improvement once those go into full effect (especially once OT gets cracking!) 

Like I said at the beginning--he's happy. He wants to go to school and is comfortable there and hasn't cried or whined or ever said that he doesn't want to go. To me, that is success! That is half the battle, maybe more than half the battle! The other things we can work on as long as he's content with being at school. 

So, I say YAY!!! 

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!

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!