Blossoming Independence: Off to Camp

Blossoming Independence: Off to Camp


We arrived at the dance, and just before unbuckling her seatbelt, she said, “I love you.” Then, off she went. Isn’t this how it is supposed to be?

My daughter is a young adult. She lives at home, doesn’t have a job, and we are the center of her world. When friends say, “I don’t want my child to ever move out,” I look at them quizzically. Isn’t that the mission? For them to grow up and leave the nest? For us, this isn’t an option. Jess can’t fend for herself. Even though she is becoming more independent, she will never live on her own without support.

Jess and Nicole at the dance. (Courtesy of Nicole Paulucci)

At first, this was difficult to accept. There have been moments when I’ve felt a twinge of envy when a friend’s child has left for college. The only time I’ve known that freedom is when Jess attended away camp, where five and a half days is considered a week. It was easier when she was a toddler. We had family who helped when they could, but as she grows older, there are fewer opportunities. We are grateful when someone invites her out — not so much because it gives my husband and me time to ourselves, but because it makes her happy.

The first time Jess went to camp, my husband and I didn’t know what to do with ourselves. We fretted and worried for the first three days, and Jess was the topic of all of our conversations. By the time we adjusted to being a couple, it was time to bring her home. Now we are more seasoned. We follow her lead and let her go. There’s almost a sense of normalcy.

Jess tried a couple of programs before finding her current day program. There’s just not a lot of choices, and it was hard finding a balance that gave her enough support while encouraging independence.

Jessie and Ryan. (Courtesy of Meghan Mccain)

She attends a community-based group that is always on the move. They have a weekly routine and mix it up with new activities. Her favorite day at the program is Tuesday, when she gets to deliver Meals on Wheels.

The rest of the week, I think she makes her choices based on who she will be with. She has her staff favorites but she also has made a friend that she looks forward to seeing. She likes Ryan for many reasons, he’s a talker and she likes to listen. He also looks after her like an older brother. For too many years, whenever I picked Jess up, I’d find her sitting by herself, holding her backpack, ready to leave. Even though being alone didn’t bother her, it saddened me. Bottom line, it’s important to be with people you enjoy and she’s found that with Ryan. It’s sweet that they choose to sit next to each other and do activities together.

What the dances, camp, and her day program all have in common is they build confidence and blossom independence. I think that is all we really want for our children. I can’t ask for more than that.

Jessie and Cait. (Courtesy of Meghan Mccann

To read more about our journey, visit my blog. (We wouldn’t even have a story if Jess hadn’t found her AAC voice.) Also, check Angelman Syndrome News on Fridays for my upcoming columns.

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Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Angelman syndrome.

2 comments

  1. Doris Ragain says:

    Jess is a sweet girl. I love to read about her experiences. Marissa has never been away from us. Now that her sister and brother are 18 and have driving experience, she goes shopping, to movies and, her favorite, out to lunch with them and their friends. She has a social life now and she is obsessed by thoughts of being with them. There are no Day programs that she could attend, that we know of. A drawback to living in a small town. Thanks for sharing a little bit Jess’ s life. I smile and then I cry every time. Can’t help it. 😂

    • Mary Kay says:

      Our experience is full of mixed emotions. Sometimes I think Jess has the best life and other times I’m sad that it isn’t as big as it should be. We have been fortunate to meet people that take a shine to her and include her. Oh how I wish Jess had siblings and more of a social life!

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