Made of Gray

"I feel sad, I need help"

Holly D Gray10 Comments
Today our speech therapy was canceled. We were all dressed and ready to go so I asked Caleigh if she wanted to go to the library. She said yes and off we went.
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We pulled up to the library. I unloaded her wheelchair and got her all strapped in. I added the iPad, with Proloquo2Go pulled up on the screen, to our new RJ Cooper mounting arm. We've done this before. Caleigh can tell me yes or no to books that I pick up.

We rolled into the children's section and started looking at books. I picked up one about a chicken, asked Caleigh if she wanted it and that's when she lost it. Screaming at the top of her lungs. Basically flipping out. I tried to talk to her, but she couldn't hear a thing I was saying. So we turned right around and got back in the car.

Caleigh cried the whole way home. Sobbing sad cries mixed in with some 'pay attention to me' screams.

When we finally got home she screamed in my face so I put her in timeout. After 3 minutes we sat down with her iPad and I asked her why she started crying in the library. She was still huffing and puffing and her arms were still very tight from the fit.

She said "I feel sad"

I asked her why she felt sad. I asked her to spell it for me. All she could get out was "N-E"

I went back to the home screen ready to almost give up. Then she said:

"I need help"

I tried to confirm. I asked her if she felt sad that she needs help. She told me "yes."

I literally started tearing up right there.

Now this could be one of two things or both.

One being that Caleigh is like every other 3 year old who wants to do things for themselves. i.e. get dressed, tie shoes, walk without holding your hand. Independence. Every kid dips their toes in the water.
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The second scenario is more heartbreaking to me. Perhaps Caleigh knows she has differences. Maybe she understands that other children don't always need the help of others to do every single task. I do know that she does understand that not everyone uses a wheelchair. I asked her. I thought I had a couple more years on that one, but I was wrong.

Caleigh's behavior lately has me leaning towards a combo of the two. Timeouts have become more frequent. Public outbursts happen once a day when out. Testing behavior is becoming more regular. There is an intelligent little girl in a body that just doesn't do what she wants it to. She's frustrated and acting out.

This afternoon we had a marathon of wills. It started because I told Caleigh not to take off her glasses. This is a constant struggle in our house. 2 seconds later they were on the floor. She literally looks at me, gets that pointer finger up there, and in moments they are on the floor. The timeout lasted for almost an hour. It looked like a scene straight from super nanny. Hysterical kid with a mom trying to not give in or end up in tears. She ripped off her glasses 5 times during the timeout and screamed, arched and did everything she possibly could do to let me know she wasn't happy. Finally she calmed down enough for me to talk with her. After timeouts Caleigh knows that she has to tell me she is sorry on her iPad, and she always tells me that she loves me, but that part isn't required. So sitting there with her iPad she says she loves me about 3 times, throws in an "I missed you" and refuses to say that she is sorry after I give her to the count of 10. So again she goes back to timeout. Repeat with the same result two more times. In the end she did tell me that she was sorry (at the count of 7) with the whimper of a child being forced into giving up the fight.
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Stubborn.

The two scenarios really don't mesh well together. Independence is not something that Caleigh has right now and she knows it. Independence, in any form, is exactly what Eric and I strive for regarding Caleigh's future on a daily basis. Right now though, she is completely dependent on us. The truth is that Caleigh will need some sort of assistance the rest of her life. Sometimes... I just hate the truth.

I'm not sure where today leaves us. I think this is just the beginning. I do know that I'm going to put together a book, in the best children's language I can, about Caleigh's story. I think it's time to start educating Caleigh about her miracle life. About what makes her amazing and not just different. Other than the book and timeouts, I'm not really sure what else to do.

This whole parenting without an instruction manual stinks sometimes.
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