Meet Julie.  This awesome mother strives to help her daughter have control over her life. She strongly encourages other parents to do the same. She is always looking for ways to help her daughter make her own choices. We’re so fortunate to have her as a member of the Network! 

What's your story?  Tell us a little bit about yourself.  How are you involved with self-determination? Why did you join the SD Network?

Julie is the mother and legal guardian of Emily who has different abilities. She joined the Self-Determination Network to see if she could get ideas for Emily to be more self-determined.  “Given that she is quite challenged in terms of using her mind and body, I wanted to learn whatever I could to work around limitations,” she explains.  When she obtained guardianship, she felt a strong obligation to help Emily have control of her life.  This weighed heavily on her, and she tried to find more ways to help Emily make her own choices.  One way that she does this is considering Emily’s response to an activity.  If she doesn’t want to do something, Julie will give her five minutes and then try again.  She says, “many times, she just doesn’t like change and is comfortable where she is.”  Julie explains they don’t always have a way to communicate the new activity to Emily, so she doesn’t know that it will be fun (or necessary).  Julie shares that Emily is deaf and blind.  They use some hand-under-hand signing with her.  “If she doesn’t want to “hear” what we are telling her, she puts her hands behind her back and emphatically shakes her head no” Julie adds. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?

Julie is excited that the weather is finally warming up. This allows Emily the opportunity to do what she loves best—go for walks in her wheelchair and sit in the screened porch and enjoy the outside. 

What tip or resource would you like to share with people who want to be more self-determined?

To help other parents help young adult children with self-determination, Julie suggests to offer options and wait times when possible. She encourages parents not to just “do things for them” without explaining what you’re going to do and why.  “When Emily doesn’t want to put her coat on, I sign “It’s cold outside.  Coat on.” Instead of just pushing her arms through the sleeves.  Sometimes, that’s all she needs to decide that she will wear her coat,” she explains. 

What are some of your hobbies?

 When we are not quarantined, Julie shares that Emily goes to an adult day program.  There, they offer opportunities to socialize, practice skills and be in the community.  Emily joins activities like a trampoline park, swimming, shopping, and outdoor walks.  She is well-loved there, and we have found awesome caregivers who can provide respite for parents.  They take her to restaurants, clay class, and other activities.  Julie adds that Emily loves to be outdoors, when it is nice out.  She enjoys the sun and breeze on her body.  She has a hot-tub (from MakeAWish) that she really loves.  “She has special water wings that help her float independently and I can tell that makes her happy,” Julie says.

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