July continued to be busy after camp. I went on a family vacation to Rangeley, Maine. We rented a beautiful house near the lake, with my mom, sister, grandparents, aunt and uncle. We used to do this when I was little, so this was a return to something I don’t remember very well!
Going out of my comfort zone was once again part of my day! I went kayaking!! The first time, I was with my mom, and I was afraid to paddle! But I overcame that fear when we went the second time. I was with my Auntie Dawn, and she wouldn’t let me just go for the ride! So I paddled! And I did great! I can’t wait to get a chance to go kayaking again! I think we are going to get one of our own! I don’t have any pictures to share. None of us had our phones on the water! My grandfather took pictures on an old fashioned snap camera, but I haven’t seen them yet.
Going out to find a moose was a highlight of our trip! We saw two the same night! One of them was out in the middle of the road! It didn’t want to move out of the way!
Campfires and making s’mores is always a special part of family vacations. I love the smell of campfires, and I love to eat s’mores! Games were part of the evenings. Yahtzee and Farkle are two of my favorites!
The sunsets were really beautiful and it was relaxing to sit on the porch and watch them.
The best part of being on vacation for two different weeks in July….I GOT PAID!!
Last week was really busy, but a lot of fun! I worked my regular hours, but on Thursday I went to Lake Compounce with the mom and some other friends from the respite group. It was a really nice day. My mom and I spent our time in the water….Lazy River, the wave pool, and then the Merry go round. I don’t like the roller coasters and the other rides. I am very afraid of heights!! The water in the Lazy River was kind of cold, especially when it came down on my head from the big pipe!! There was a lot of water! My mom had to paddle us to the side so we didn’t go under them all. I wasn’t a big fan!!
The wave pool was fun, but a little scary at first. There were some very big waves coming at you! I stayed in the area where the waves weren’t so big, and my mom stood behind me. She said it was good for me to practice my balance and work on my core strength. I was just having fun!
On Friday, I met a new friend/support staff. His name is Cameron. I really like him. We had so much fun together. He is very into being healthy and being active, so he took me to the gym! We did some weight lifting. He taught me the right way to do some exercises with the machines. It was hard, but not too hard! I am looking forward to doing more!
Then we went to Target. Because I struggle with my weight and snacking sometimes when I am home, he introduced me to some healthier snacks I could try. They were “Shameless Gummies”, and they were so good!! We shared the whole bag, except for some that I saved for my mom to try. I asked my mom to order some for me to take to camp next week, along with my veggie sticks. I am going to do my best to eat healthy and exercising, and lose some weight.
After our shopping trip, we got lunch at Chipotle. Cameron helped me make good choices of what to put in my rice bowl. I ate half, and took the rest home for later. I was proud of myself.
YUMMY!!
Next came mini-golfing and riding the Go-Karts! So much fun!! I almost had an accident when it was time to park the g0-kart…lol..I was going too fast! I can’t wait to go again though!
I really had so much fun with Cameron. I am excited to work with him more, and learn more things about making healthy choices and learning more exercises. We have plans to go to the gym more, go swimming, and maybe hiking. But first…..CAMP!!!
Finding support staff that are trustworthy and who have a heart for working with people with different abilities, is not the easiest job! We have been thru a couple, and we feel very blessed to find Cameron! He is a very impressive young man, currently working as a paraprofessional, and going to school to become a special education teacher! Thank you to his mom, Regina, for thinking that Chelsea and Cameron would make a good team. We are so excited to have him as part of Chelsea’s “village”.
Working with DDS and the state to get support hours, never mind finding the right person to fill them, is a challenge in itself. Support hours are based on the person’s LON…or Level of Need. Chelsea’s LON is a one…which is a blessing and a curse. She is extremely capable of becoming a very independent young woman, but she needs help to get there. With a LON of one, she doesn’t qualify for very many hours of support. She currently is getting a total of 24 hours of community/residential/in home support and 5 hours of job support, each week….and we have had to fight for them all. Some of her hours are self-hired, which is where Cameron comes in, the rest are agency supported, currently by MARC. When I was working for the school system and getting out of work at 2:00 every day, weekends off, summers off, etc. it was easy for me to provide Chelsea with what she needed. Now that she is a young adult, and I work as a memory Care program manager at an assisted living community, my availability is limited…so help is needed. We are thankful for the hours of support Chelsea does have, but just wish that the Commissioner and all who had a part in determining how much funding is allowed, would look at the system again, ask parents for their input, and maybe make some changes.
Today is my 25th birthday! Everyone keeps telling me I am a Quarter of a century Old…and I didn’t know what that meant! Now I do! It’s like one quarter in a $1.00.
I had to work on my birthday, but everyone sang Happy Birthday to me after Bingo. It made me really happy! I love my job.
Me and my mom at work
I had to go for my physical this morning..on my birthday! but then went grocery shopping with my sister. After work, I went to a DDS picnic in the park. They had cupcakes for me there! My family is going to celebrate my birthday of Friday. I think maybe at Red Lobster.
When my grandparents were here, I went shopping with my Nana, my Auntie Dawn, Courtney, and my mom. I went shopping for some new clothes to take to camp in July when I go to PALS . I am very excited about going. I LOVE Boston!
Here’s a snapshot of my first 25 years!!
Born on Father’s Day 2001. I was born 5 weeks early, weighed 5lbs!
21st birthday at Stafford Motor Speedway…I love Twisted Tea!
A NOTE FROM MOM
There has been a lot of talk in social media lately about the value of a child who has Down syndrome. I think it is pretty clear from the collection of photos above, that Chelsea’s life has value. She is not a mistake.She is not a glitch. She is a beautiful, precious gift from God. I have been asked to write a book about the way she engages with the residents of the senior assisted living community where we both work…with her whole heart and a compassion that is genuine…not something I can teach. It was the way she was born. The way God made her. Her life has value…it has touched so many people in ways I can’t even begin to put in writing. She is not a glitch. She is just the way she was meant to be…Down right perfect.
Tomorrow I have a meeting with the Deputy Commissioner for DDS to talk about how I feel about remote supports, and to see if I can get some more hours of support to help me get ready to move into my apartment in the spring. Keep your fingers crossed for me! I have so much to offer if I can just get the help I need. My mom and my sister are great, and help me a lot…but to be more independent, I need to learn how to do things without them all the time. I am so excited about moving into my own apartment, but I want to be ready!!
This photo was taken at the ground breaking ceremony for the new apartments! I was asked to speak about what it means to me to have the chance to live in a supported apartment, so I got to wear a hard hat and hold the shovel afterwards!
alittlebitdifferentalotthesame 