My Daughter Is No Peter Pan

Before MeMa was placed with me, I sat down and talked to Bubba (who was nine years old at the time). He knew I was licensed for foster care and he knew what that entailed. He also knew I was looking for a child to adopt.

When it became clear MeMa may very well be that child, I sat down to discuss the situation with him. When I mentioned she had Down syndrome, he wanted to know what that meant. Being the super smart science guy he was, I told him she had an extra chromosome. I told him her eyes were shaped like almonds and her fingers were a bit stubby. I told him it would take her a bit longer to learn how to do things and we would have to be very patient with her.

He gave me his best “What you talkin’ ’bout Willis?” look and I realized I was being too scientific, even for him.

He said, “Mom. Will she ever be able to ride a bike?”

I explained she would be able to ride a bike, but it may take her longer to learn how to do it on her own.

“Will she be able to play soccer?” he inquired.

I told him yes. She would be able to play soccer, but she may not be able to run as fast as the other kids.

“So she’ll be able to build with Legos and get into my stuff, just like any other sister. Right?” he asked.

I assured him she would be able to play with Legos and she would get into his stuff, just like any other sister.

He thought about it for a minute.

“Well, she’s cute enough, so she can be my sister. But until she’s old enough, she needs to stay out of my room!” he said.

We talked about how other people may act towards MeMa and about the social workers and therapists that would bombard our home. He asked age appropriate questions and truly had a grasp on the situation.

And that was that. He knew what Down syndrome was. He knew what it meant for his sister-to-be and he had an idea of what it would be like to have her in our family.

Eventually, once MeMa was placed in our home, I went out and bought the book “We’ll Paint The Octopus Red.” It reminded me a great deal of the conversation I had with Bubba and I felt good about the message the book contained.

Recently, I came across another book written to teach children about Down syndrome. While the author had good intentions, this book falls flat on its face. Instead of explaining the huge potential in people with Down syndrome, it almost feels as if the youngest child in the book (who has Down syndrome) is more of a pet than a equal. He does cute things and makes everyone laugh. Per the author, people with Down syndrome are adorable and fun to have around. Oh, and they never want to grow up, just like Peter Pan. She actually likens people with Down syndrome to the Disney character!

My stomach dropped. I shared the book with Ash. She was less than impressed. She had quite a bit to say on the topic, but I’ll save that for another post. (Both her and I will do a formal review of the book, on this blog, in the very near future.) Suffice it to say she was not impressed.

I shared the book with Bubba. He looked at me and said, “That’s not MeMa. That’s nothing like MeMa.”

I have to agree. This book actually perpetuates the very old stereotypes about individuals with Down syndrome parents, teachers and advocates have been working SO hard over the years to fight. And don’t even get me started on the visual aspects of the book! The character with Down syndrome looks like a mindless dolt.

While this book may represent the author’s experience with and knowledge of her own child, I doubt she realizes how detrimental her stereotypes are to people of all ages with Down syndrome. The book is not an accurate portrayal of my child. It’s not an accurate portrayal of ANY of the children in our local Down syndrome group. It’s certainly not an accurate portrayal of Chris Burke, Bridget Brown, Karen Gaffney or Sujeet Desai.

My daughter does want to grow up. She does want to do new things and challenge herself. She wants to be involved in everything, just like any other seven year old child. And when she grows up, I certainly don’t want her treated like a cute little puppy. I want her to be treated with respect. I want her to be treated like an adult. I want her to be treated like anyone else with unknown potential!

Children with Down syndrome do grow up. They WANT to grow up. And when they do, they deserve to be treated like the accomplished, respected adults they are. Not a cute playmate or little more than a funny sibling.

My daughter is no Peter Pan.

Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life.
-Chris Burke

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