I'm rolling again!

I got an exciting surprise today- a new bike! I outgrew my old bike a few years ago and we have been on a waiting list to get a new one from an organization called Preston's March for Energy. They give adaptive bikes to people ages 6-21 all over the world! Since 2011 they have given away over 400 bikes! It all started with Preston, a boy with mitochondrial disease, who received a bike after a family did a fundraiser for him. His family wanted to pay it forward and Preston's March for Energy was formed!

You may not realize it, but adaptive bikes are very expensive. The only bike I ever had before this one, I got when I was 4. My family also did a fundraiser for that bike because it cost close to $5000! Yikes! We made changes to it as I grew, and I had it until I was 11. Here is a video of me riding my bike for the first time.

Me with my first bike

Liam and I riding together on my old bike

My new bike came from Europe. Preston's March coordinates with a local bike shop to receive the bike and put it together. Today we went to Martha's Bicycles in Plymouth, MA to meet Evan, one of the board members from Preston's March. I got to try it out and everything! I thought I might not be able to get the bike today because I had to stay home from school yesterday with a fever, and I was up all night- but mom made me rest all morning and I felt well enough to go!

Getting fitted on the bike

Trying it outside

Getting my hands hooked up

Mom, Liam, Me, Evan, and Ed

Riding to the park

Lovin it!

Thanks Evan and Preston's March!

 Here is a video of me riding today!

Hey! I'm the new kid!

Hello! Every year I like to introduce myself to my new classmates, and this year I am introducing to a whole new set of people. I have been at Ezra Baker for the past six years, so I'm really excited to be hanging out with high school kids this year!

I heard that high school kids like top 10 lists, so here's the top 10 things you should know about me.

1. My name Kai means ocean. This is kinda cool because my Dad was in the Coast Guard and we've lived around water my whole life. Also, I'm a Scorpio and it's a water sign.

2. I moved here from California six years ago when I was in 1st grade. I've been at EHB in the SEALS class since then. I was born in Fort Bragg which is on the north coast of CA. It is really beautiful there.

3. I have a younger brother, Liam who is 10 and a younger sister, Addy who is 8. They are pretty cool, but honestly they can be really loud and obnoxious sometimes. My sister Addy helps me pick out my clothes and she is good at reading to me. Liam likes to have staring contests with me.

4. My mom is Stephanie and my dad is Rob. My mom teaches for Calmer Choice and also works for a marketing company doing Facebook and SEO stuff. My dad retired from the Coast Guard 3 years ago and now works for SAFE Boats. He travels all over selling tactical vessels. He is gone a lot, but sometimes brings us cool things from Saudi Arabia and Egypt. We have a dog named Ed.

5. I LOVE music. If I hear a song I recognize you will definitely know it! I like lots of songs on the radio with a fast, fun beat, but MY song is "Somewhere Over the Rainbow" by Iz. My music teacher is named Ms. Sarah Jane.

6. I love to do activities that go fast- like skiing and biking. I have a zip line at home that I go on in a swing- it's so fun! I have done some triathlons with my Mom and Dad too! I also like to go horseback riding- I don't go so fast, but I love the horses.

7. I have lots of equipment! I use a wheelchair, a stander, a gait trainer and a special bike. All of this helps be be able to move around the world. I also have a special way to eat- through a tube in my belly called a g-tube. I can also eat with my mouth too.

8. I communicate differently than most people. You will always know if I am happy or sad or uncomfortable. I also make choices by making sounds with my voice.

9. I am VERY patient. I have to wait a lot, and I'm used to it. But often I am waiting to be included- I listen to what is happening all around me, and then I wait. I love being part of the action, listening to stories, and being talked to.

10. Diagnoses. You are probably are wondering why I don't walk and talk. That's because I have cerebral palsy.  Don't worry I'm not contagious. I also do not see very well, but I have great hearing. Oh, and one last thing, I'm kind of a super hero. You can read about it here. 

One thing I'm really looking forward to this year (besides making new friends) is having someone figure out how to understand what I am trying to communicate. We've been working on this for quite a long time and am hoping someone can help me, my teachers and parents find a way. So, whatya got? Bring it on high school!

Summer Highlights 2018

As many of you know, I had surgery a couple of weeks ago. Just wanted everyone to know that I am ok and healing well. I have to wear this weird stretchy band around my stomach for awhile, but other then that I am back to normal and TONUS is slowly waning. I have to go back to the hospital every couple of weeks so they can adjust the dose of super hero serum on my pump to find the "sweet spot." So onto more exciting stuff...

We had quite a busy summer, as usual. I like to put out some highlights to share with my class every year, and this year is REALLY important because I am going to a new school with a new teacher! I have been at the same school since I moved here 6 years ago, so this is BIG.

Here are some summer highlights....

Summer really starts at our house on the 4th of July. We always go to the Chatham Parade and sit with our friends. My brother likes to make crazy hair styles and paint his face.

Our next adventure was to Woodstock, VT. We went there with my Dad's family. He has 5 brothers and sisters and I have lots of cousins. We stayed at a big house and saw lots of cool things along the Quechee River like covered bridges and the gorge. We had family Olympics and campfires.

I got a new beach chair this summer from Cape Cod Beach Chair. They made it special for me with my name on it. It has straps so I don't slide out! I got a new bed this summer too- the head and feet lift up and down- AND it has a massager!

Of course we went to the beach A LOT! We like to spend time at the pond in the fresh water mostly, but we go to the ocean to.

I love music and had music therapy with my teacher Ms. Sara Jane. She is GREAT!

 Here I am at the hospital after my surgery with my sister, Addy.

The best part of my summer was going to Camp Jabberwocky. It is an amazing camp for people like me. We go to family camp at the end of the summer and it is so. much. fun. We did archery, visited a farm, had a talent show, ate ice cream, visited alpacas, did yoga,  went to the beach, and I even went paddleboarding!

The last thing we did this summer was go to Bourne Scenic Park to go camping. We road bikes, went swimming, danced with a band and ate s'mores!

I hate to see summer end, but I really LOVE going to school too!

Sayonara Super Hero Alter Ego

Some of you may not know this about me, but I have a super power. It's a rather common power among super heroes, but not all powers are used the same. My super hero is called TONUS. Tonus has AMAZING strength and vigilance. Tonus is SUPER persistent and has been known to bend metal and break thick plastic.

Broken footplate on my wheelchair

Sounds pretty cool, right? As with most super heroes, there is often a dark side that makes it not all fun and games to have a super power. Sometimes Tonus is beyond my control, he pushes and pushes on things and sometimes I just want him to stop! Tonus is so strong that he doesn't listen to me. He makes my arms stay in a straight position and my legs too. Unfortunately, my legs have to be locked in my wheelchair sometimes, so Tonus can be a big problem in this situation. Sometimes my feet and legs hurt a lot because of Tonus. 

There comes a time in every Super Heroes' life when they need to decide if they want to live the life of a mortal or of their powerful alter ego. So, tomorrow I will say goodbye to Tonus. It has been quite a ride having Tonus be part of me, but I'm ready for him to go. 

I will have surgery tomorrow to implant a secret pump in my abdomen. This pump will deliver a special high powered super hero serum to my spine. This serum will keep Tonus at bay. We have to make sure just the right amount of serum is delivered so I will still be able to stand up and take steps. If there is too much serum my legs will be floppy and I won't be able to stand. 

Sayonara, Tonus!

Stay tuned for updates on Tonus...

Goodbye EHBi!

I can't believe I am saying goodbye to my school, Ezra H Baker Innovation School. I have been at EHBi for six years- longer than most students attend here. Before we moved here six years ago my mom and dad came to Cape Cod to visit schools that would be able to accommodate my needs. As soon as they walked into Miss Tricia's class, my mom said, "This is where Kai is going to be." They could tell it was a place where I could learn and make friends, and that Ms. Tricia was someone very special. We decided to move to a place close enough for me to be able to go to school at EHBi. I started in 1st grade, and now I am finishing 6th grade. I want to say thank you to so many people who have made my experience here so great.

Of course I have to start out with Miss Tricia. If you don't know her, you are missing out! She works so hard for me and all of my classmates to make sure we are working toward all of our goals and being included in our mainstream classrooms. She LOVES to do art and always has us making fun projects. In fact, every year we do an art show at the Yarmouth Cultural Center where we get to show off what we worked on all year. I am so sad to be leaving her after all this time together. I hope to come back and visit. I love you Ms. Tricia!

Miss Tricia and Me

At the Art Show

Mr. Depin is our principal. What can I say, he really helps to make our program (called the SEALS) feel like part of the school. He always has a positive attitude and even helped fix one of my toys that I brought to share while he was wearing a suit! I feel very lucky to have been able to be a part of his school and am thankful he allowed me to be a school choice student at EHBi.

Mr. Depin at our graduation

Mr. Kliment is a 3rd grade teacher. I have been in his class for 4 years in a row!! Since EHBi only goes to 3rd grade, I needed to be matched up with a 3rd grade class when I was in 3rd, 4th, 5th and 6th grades. Every year since my "first" 3rd grade year, we have asked Mr. Kliment if I could be part of his class again. He said yes every time! He always goes out of his way to make me part of the class. He would always read my blog to the class and let me share about the things I do outside of school. He helps the other kids learn about me and how I am different and the same as them. He makes sure I have special friends every year and attends special events for me outside of school. Every time Miss Tricia asks where I want to go- most of the time I choose Mr. Kliment's classroom! I am going to miss him so much!

Mr. Kliment and Me

Ms. Pat is my nurse at school. She has the responsibility of taking care of all my hygiene and nutrition needs- I'm not going to lie, it is a BIG job. As you know my body does not work like most people, so I need support doing all my activities of daily living. Ms. Pat always made sure I was neat, clean and fed. Other than my Mom and Dad, Ms. Pat is the best at feeding me- which can be a little tricky. She was also very diligent in keeping my mom informed of what was happening to me at school- how I felt, what kind of day I had, and any other pertinent info. Since I cannot tell my family what happens at school, Ms. Pat makes sure my family knows anything important. Whenever she calls my mom, she always starts the conversation with, "Kai is fine. I wanted to talk to you about..." That helped to make my mom not worry about getting a call from the nurse. Ms. Pat is retiring this year and we are SO glad she waited until I was leaving- she will be VERY missed!

Ms. Pat and Me

Ms. Sue has been my physical therapist at school since I came to EHBi. She works really hard to make sure I am moving and staying safe. She helps me in gym class and in my classroom try to access what we are doing by helping me manage my body. She took me to a program called Gym Buddies every week so I could see my old friends who had graduated and play games with them at their school. She also helps us apply to get equipment I need at home and fills out LOTS of paperwork for me! Luckily, Ms. Sue will also be my PT at the new school.

 

Ms. Sue and Me

I have other therapists who help me at school also, like Ms. Hilary, who is my speech therapist. She has been working really hard for the past few years to help me get a communication device (which we don't have quite yet). She also fills out lots of paperwork for me and tries to find creative ways for me to communicate. She works with Ms. Cammie who is my occupational therapist. She helps me find ways to access switches so I can make choices, communicate, play games and make friends. Ms. Cammie will be at my new school too!

In my classroom we have lots of aides to help us out. Ms. Sonja and Ms. Hannah were in my classroom this year. They take us wherever we need to go: gym, music, art, library, Mr. Kliment's, recess, etc. They help us communicate with our friends and be part of the class. They sometimes even give me foot rubs!

Ms. Sonja and Me

Hannah and Me

Over the years I have made some really great friends and EHBi- some of them I still see outside of school occasionally. Each year I always have a few special people who go out of their way to be my friend. They read to me, help me in art, music and PE and sometimes come to my classroom to help out. They hang out with me at field trips and make me a part of their class. Here are just a few...

Tanner

Maeve and Me- Maeve and I have been in class together since I started 6 years ago! I am going to miss her next year, but soon enough she will be at DYHS with me!

Another Maeve!

Mr. Kliment, Landon, and Me

I was very proud this year to be part of the EHBi graduation ceremony (it took a LONG time to get there!). I've watched lots of friends graduate, but this year I got my chance. I got to sit on stage with my friends, share a memory with the whole school and get my graduation certificate. It was an A+ day, and I know because my mom always cries when great things happen!

Here is a link to my memory speech.

Bon voyage Ezra Baker!! I will miss you!