Birthday Birthday Birthday!, Cerebral Palsy, Family, Friendship, Love, Memories, Our Daughter, Our Son, Parenthood, Photos, Sebastian at School, Sebastian's Achievements, Sibling Love, Toronto

Sebastian is 6.

Seb is 6
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Dear Sebastian,

This year was your GOLDEN birthday. You turned 6 on May 6. And I’ve taken a long time to reflect back on your year. But here it is! You’ve done some amazing things this year and had many adventures. I’m so proud of you.

School:
This year was a BIG year for you. You finished preschool AND started Senior Kindergarten at a new school, full day. It’s always a little scary to let you go grow. But exciting too. You’ve had another fantastic year! I still drive you to school and pick you up but you have had a few fun bus adventures for school field trips and are really looking forward to taking the school bus TO school next year (when you start 1st grade!!!). Buy I will still pick you up. Like I said, it takes time for me to let you go grow.

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Music:
You performed at a special concert in front of your school and many others to show your drum skills using the VMI (Virtual Music Instrument). There was a famous country music singer – Gord Bampton – who also tried the VMI but didn’t quite have your skills. It was definitely one of my proudest moments seeing you on stage, performing! Life is possible. And you love it as full as you can. You are looking forward to taking music again this summer.

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Another bonus was meeting The Barenaked Ladies on Record Store Day!!!

Communication:
I love knowing what you want to say/communicate. As your mama I’m pretty good at guessing but now that you can tell us what you want and what’s upsetting you or making you happy using your communication book or your iPad, makes me so happy and so proud. I look forward to the day when you tell me what you want to say independently using technology, whether it be eye-gaze or switch access to a higher tech device. Time and again therapists remind us that technology fails or breaks or gets stuck. But I see your excitement and face light up when you can communicate something on your own or use a voice output and I know how important it is to keep moving forward.

This year we have tried several eye-gaze devices. Our favorite and most recent being the Tobii C-15. You and Tallula sat side by side playing games together. Your favorite was making graffiti, with the movement of your eyes! We also tried some choice making and an ‘I like’ grid which you told me you like swimming, art, and music. You also have a customized switch you’ve been using for computer games so you can navigate your turn independently, both at home and at school. And of course you use your ‘yes’ and ‘no’ so clearly, sometimes adding vocalizations with us at home but always at school. Different expectations. 😉

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Using your hands. I remember when we first started trying out switch access when you were in preschool. I was pretty adamant that I wanted you to use your hands. I wanted you to access toys with your hands and not just use a switch to do so but also work on reaching and grasping. As well as targeting. Now you are about to get your very own customized switch that you will be able to use to access computer games and your iPad while eventually using it for scanning with a communication device. At least we will try it out with the iPad. You can also share messages with a switch that is prerecorded. This is one of your favorite parts of our day: choosing what to share with your teachers and coming home to share what you did at school. I love to see your excitement and hear your accompanying vocalizations as much as I love to have access to that information that you can’t otherwise tell me.

We’ve had a great year at school working on different ways for you to access your communication and build your vocabulary. This makes me so excited. It’s hard for me when I pick you up from school and you are so excited to see me and tell me about your day. Your mouth opens wide in a smile and then in an ‘o’ where the words you want to share get stuck. That’s when I get mad at cerebral palsy. Be used even though you need help walking you can do it. But talking is another world for you. You try so hard and the words don’t come out. That’s why as much as we want you to achieve physical goals we want you to be able to communicate your thoughts and needs more.

Travel:
You went on some big travels this year. We took a huge road trip with your Granny and Pop from Toronto to Ottawa to Montreal to Quebec City and up to Tadoussac to see the big whales. It was your first real road trip aside from visiting your grandpa in Kentucky when you were not yet two. You enjoyed being in the car so much more this time around. I’m sure it was the company of your Pop seated in the back with you that helped.

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You also travelled by plane to the land of shamrocks and leprechauns. We were invited to the Upsee launch in Belfast and you loved being able to have your face painted. You went through the entire book and chose a snake. I was so proud of you for communicating something we had discussed the night before with your yes and no going through the face painting book.
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We made new friends and went on new adventures! Watching you walk (in the Upsee) over the rocks at the Giants Causeway and stand tall for a picture with daddy and I brought tears to my eyes. You are 6 now! You still have more stamps in your passport than most adults!

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Big Brother:
You love having a sister. This year it became much more fun for you!
You love being a big brother. You have come so far this year in sharing your mama and papa daddy! Now that Tallula is older and so much more independent you enjoy playing with her and of course dance parties, which are your favorite. And you are her favorite. She says your name first in the morning and can’t wait to go see you. She grabs your head and kisses your forehead before bedtime and always wants to help push you into school (where you are happy for her to be an honorary class member). She makes you laugh with her silliness and dramatic outbursts. You love giving her rides on your Red Racer and racing around in circles. Watching your relationship develop has been probably one of the most rewarding things I’ve experienced as a parent. Thank you.

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Easter Seals:
You were on TV! Easter Seals Ontario invited us to share your story with thousands of viewers to raise money for their programs and funding; like the Family Summer Camp we will attend in August and helping provide families with the funds they need for equipment like walkers and bath seats. We had a lot of fun in hair and makeup and you spoke right up during the interview, which was the best part ever.
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Team Seb Can Do:
You did the RWWR race with Mama this year and we were awesome! I do not like running. But you make me like it. I love looking down at you and seeing your smiling face and even laughter as we race past other walkers. Because we aren’t quite ready to compete in the full on run yet. Maybe next year. You motivate me to go forward and go faster. Because you do it in different ways every day.

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We celebrated your birthday a lot this year. But I suppose we always do. Because you are so worth celebrating Sebastian. Your heart is so big, so full of love, and so happy. We love living life with you and helping you explore the world around you. We love your laughter and your sense of humor. We love you! Six is going to be another big year as you will head into first grade. And we can’t wait for more Seb Can Do adventures. We love you Sebastian. So much.

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1 thought on “Sebastian is 6.”

  1. What a beautiful tribute to your big six year old! I am so keen to learn more about the eye gaze systems you are trying! I am hoping with mainstream gamers using these systems they will become more adorable within the disability world too. Happiest of birthdays again to Seb xxxxx

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