3 things my son lost with his disability

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

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?

168 thoughts on “3 things my son lost with his disability”

  1. Dear Charles, I appreciate that you are taking time to talk frankly about the losses Joshua is experiencing and you are grappling with. I know this will be a great help to many people understand more about the challenges this brings to a child and those who love him/her.

    Thank you.
    Your sister in Christ
    Chris Resch (RN)
    Coon Rapids

  2. Hey, Porter family!

    I am so sorry to hear about Joshua further decline.
    We have other challenges, and I think one thing we have done is pre-talk to leaders that our kids end up with. That way they have a greater chance having a good start than being judged off the bat for something they can’t help. Help people understand how Joshua wants people to talk to him – stand by wheel chair or squat down for eye level. What type of signals would he give if he is overwhelmed and wants a moment of privacy. I don’t know. Wish we all where allowed to be teh people that we are.

    Blessings!

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