In Her Own Words: Penny on Independence and Self-Advocacy

When Penny was first born and diagnosed with Down syndrome, Peter and I went through a hard season in which we felt like our expectations for parenting were overturned now that we had a child with a disability. We had both seen parenting as a decades-long interruption in our plans for our lives, after which we would return to independent living. 

But now, we faced the possibility that we would never experience an empty nest. We thought we might need to provide physical and emotional and social care for Penny forever. We talked about living somewhere when we were older and building a guest house for Penny, or living in a city so that she could use public transportation. We assumed she would always live with us. At first, that felt like a loss. 

In time, as our love for her grew, we started to question our own assumptions about the goodness of “freedom.” We began to understand that love does not involve conditions, and that love grows and expands as we give ourselves to one another. We began to look forward to our future, living alongside our grown daughter. 

But then we started to meet adults with Down syndrome who lived and worked on their own or among peers. We started to learn about programs that equip people with intellectual disabilities for life in community apart from their parents. 

We don’t know what the future will bring. We are still very open to the possibility of Penny living at home with us for decades to come. But she is now nearing 14, and she continues to grow in independence and self-advocacy, as she writes about below. We now assume there is a good chance we will face an empty nest after all. Come what may, we are excited to see the ways Penny will continue to grow into her own person, teach us to let go of expectations, and hold on to love. 

(As with previous essays, I have not corrected Penny’s spelling or grammar)

Independence is important to me and this is why.

Independence means do everything by myself. These are what i can do independently. Making a snack and taking walks. I can read out loud to the whole church. I pick out my outfit and get dressed, brush my teeth, and pack up my backpack. I could make my breakfast and lunch, but I don’t because then I would be late for school. 

These are what i can’t do yet but maybe i could. Putting rubber bands in my invisaligns. Jumping into conversation at the lunch table. Going out for a meal by myself. Make my lunch.

It was hard the first time I made a quesadilla. Because I didn’t know the right moment to put the cheese on. It was hard to flip my quesadilla. I do feel proud of myself for making these happen. 

I want to be able to paint my own fingernails,and walk down to Washington Primary School when my friends have a soccer game or softball game, i would also want to live independently but without my parents i mean they could check on me via text, but it would be fun if i could live with my friends in Chicago

If i am going to be independent i can speak up for myself

Sometimes I speak up for myself, but sometimes it is hard. 

Advocate means talk and express how i am feeling using words.

I need to speak up when i don’t want to be late for a class.

I need to learn to speak up for myself. When i ask for help and maybe they don’t hear me or just keep doing what they are doing, they might be in the middle of conversation with the teacher. So i need to learn to wait for a break and then step in. 

if you don’t speak up for yourself people don’t know what you need. Sometimes i speak to fast i think this has to do with Down syndrome

This is how i talked to Kerry my ballet teacher when i started a higher challenging class. My belly was hurting all of a sudden so i just sat down. I didn’t know how to speak up for myself because we were in the middle of an exercise and i also felt worried about what kerry would say. And then after class i went up to Kerry and said my belly was actually not hurting and i talked to her about how the class was challenging for me. She helped me strategize how i could do the class and all in all i enjoyed it. 

This is how i advocate for myself in the beginng and now i will give some advice to people 

Take it one step at a time and never give up.

Penny has written several other posts recently including thoughts on entering 8th grade, a letter to a new mom of a baby with Down Syndrome, her attitudes about healthy eating and exercise and ideas about God and church. Her younger siblings have also shared their thoughts on having a sister with Down syndrome.

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This Post Has 2 Comments

  1. Theresa Redifer

    Thank you for sharing the story of your beautiful family. I would like to see the documentary.

    1. Amy Julia Becker

      Thank you! Do you mean the documentary Normie? If so, I’ll be sure to share far and wide if it becomes available through streaming platforms. You can sign up for my mailing list if you aren’t on it already and I will send word if it comes out!

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