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Life Cartography is written by Dr. Charles Porter.
Life Cartography is written by Dr. Charles Porter.

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Life Cartography is written by Dr. Charles Porter.

Culture. Coaching. Leadership. Creativity.

3 things my son lost with his disability

Charles Porter, January 4, 2015January 4, 2015

Recently, our son began needing a wheelchair. It’s a journey thousands face.

In this process, we’ve received lots of love and support from friends and family. Yet at the end of the day, we often feel like people don’t know what to do with Joshua because of his disability. Here are three things we’ve noticed that he has lost.

Big brother is cool #brother #sistrr #life

A photo posted by Charles Porter (@lifecartographer) on Oct 10, 2014 at 2:59pm PDT

Privacy

Joshua is a very social little person. He’s extremely joyful and people love to be around him. But he’s also private. He’s an 11 year old boy, who went from a certain level of independence to need help going to the toilet. I can tell he is embarrassed. He also needs help bathing. I know it’s humbling for him.

Independence

There are so many things he can no longer do for himself. Which means that he can’t be left alone. At 11, that’s probably not what he needs anyway. One of the goals of healthy parenting though is teaching our children a certain amount of independence.

How do you do that when your child can get up off the ground if they fall down?

Age Appropriate Social interaction

Before Joshua’s illness began to talk its toll, when he could still walk and get up off the ground, friends invited him over. Peers talks to him at age appropriate levels. Adults talked to him as though he were his age.

Since he was diagnosed, Joshua hasn’t grown more than a few inches. He’s small. And sitting in a wheelchair, he isn’t very big. Everyone looks down (not emotionally, but physically) on him. And they tend to treat him then as a little one. He’s not.

Joshua and I have theological talks. We talk about girls. We have age appropriate conversations. Somehow, many people can’t see past his disability.

Joshua has some of the most wonderful people in the world who love and pray for him. We have no complaints in that area. But I know that maybe other families are struggling through this as well. If you have a child with a disability, how have you dealt with this?

Disability parenting Practical DMDMuscular Dystrophy

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