Saturday, February 11, 2012

Responding to Your Comments # 6

Blog Post: Who Will Win Today? and CP Connection #3

I would come up with something else. There will be days when she just can't do something as well as she did the day before, no matter how hard she tries. Sometimes trying again tomorrow is the best plan of action. You don't want her to feel defeated or that she's "lost" by making it seem like a fight.

Thanks for this perspective! I really appreciate it when adults with CP can give in their 2 cents. I really take that to heart. Thank you for helping me understand that this is part of CP and there will be days where she really cannot do something. I really needed to know this!

When you mentioned that "Nina's left foot pops up and she walks on her toes" It really made me want to share these special boots that were suggested by the Conductor when Hailey attended Conductive Education. The Tommy heel that is inside this boot, coupled with the strap and bickle really help with keeping her heel down on the floor. They are very expensive (upwards of $200.00) but she wears these instead of AFO's.

Thank you so much for this tip. Here is the link to the boots for anyone that would like to take a look.
I will definitely ask about these when we go to Mayo and see what they think.

I also recommend finding a different approach.
As Sarah mentioned, there will be some days when it's difficult to overcome her CP. On those days, she may not "win"; that would make her a "loser" and we certainly don't want that! Especially since this is child who seems to struggle with learned helplessness. (I know this was a big problem in the beginning; not sure if this is still the case?) I think the concept is a good one, but I think you need to rework the wording to avoid winner/loser. You don't want to make her feel bad about herself if she's having a difficult day. In short, I would avoid a "good/bad" dichotomy. Instead, I would try a "good/better" approach. Perhaps you could say "overcoming" (on good days or "living with" (on not-so-good days) or something like that?
It's certainly difficult, as you want to make her feel good and build confidence when she's doing well, but you don't want to make her feel bad on days when she's already struggling with her body.

You know, we had a difficult week with Nina, and the only thing that was different was this, so we dropped it quick. She cut a friend's shirt at school during art class and had a bathroom accident at school. While it "seemed" to work, obviously there was much more going on. Interesting you bring up the "loser" issue because it did come up. Thankfully we stopped that within a week. Now trying to find other ways to motivate her. It is ALL confidence, so we need to find ways to boost her confidence. Any ideas?

If you did not get a chance to connect, the CP connection link is open all month, so you can join any time!

Blog post: My People

This just goes to show that the word "Missionary" doesn't necessarily mean going somewhere on the other side of the world; no, sometimes it means going somewhere very close to home.

That is exactly right! And we are all missionaries to "our people" whoever they are, wherever we are.

Thanks for sharing your experience with God's call. It's a great reminder that God is eager to point us in the right direction.

Yes He is! Sometimes it takes us a while to "see" what that is. I wonder sometimes if it is because we are not ready yet, and He is working in us. I know I would have not been ready or would have understood it at the time of the events in "the Dream" and a couple of days later on the "Parade of the Nations" it would have been so overwhelming! is exciting and humbling. 

I have enjoyed reading your blog for a really long time, this post however really captured me. I will be blogging about this post tomorrow and linking it to your full post. Thank You!!!

No, thank you! Feel free to share and link back here anytime!

Our pastor's wife...the Mommy of Caity who has Down's Syndrome...will be speaking for the first time at our ladies retreat on "When God Sends A Special Child".

You know, I know of many pastor's families that have kids with special needs (or Down syndrome).The church can make a difference. I think it would be sweet if we could all come together and saw our churches transformed because of these people, "my people" and how much they have to offer.

Thank you all so much for the beautiful and encouraging comments you left on this post. Really, I am so thankful!

Blog Post: So Full of Love: Siblings and Down Syndrome

How we can be so wrong when we presume our life story, yet God has penned it perfectly

Isn't there a saying that says something like, "If you want to make God laugh tell Him your plans."? Yes, you are right, His plans are the perfect ones.

I too worried that my daughters would have a different relationship with my son. I was so wrong.

No comment here, I just wanted to share :)

God is so gracious to us and blesses us so much. I love how your eldest's heart is so much bigger with love because of her precious sister. God's love in real life.

I like how well you summarized this. It is so true. God's love in real life. 

Thank you, again, for all your thoughtful comments on this post.

Blog post: Would You Like to Guest Post?

Would you? I would love to share your stories of how God has borough something beautiful out of the broken places in your life. Would you consider guest posting?

1 comment:

  1. The one drawback to not moderating comments on my blog is I sometimes MISS them! I missed yours until yesterday, so I am writing you back here to let you know I'd be happy to guest post for you on that topic. Just let me know if you have any specific guidelines aside from the obvious and when you are interested in having it. It would be an honor!!


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