Thursday, February 17, 2011

She is Not a Baby, Treat Her Like a Big Girl

About a month ago I posted about the challenges we face with Nina and her Cerebral Palsy. From our experience with Down syndrome, I know that parents are the experts.So in that post, I was "Calling all Cerebral Palsy moms"...and they responded.

Learning from other moms that walk the same road we walk is so helpful! Let me say it again, it is so helpful! They get it, they have been there, they know what it is like. The most helpful part I believe, is that right now I am a sponge and I am so ready to learn and listen to what these mom's have to say. I have been challenged in many ways and I have put some of their advice into practice.

My new friend Cary blogs at "About the Small Stuff." She has taken the time to e-mail back and forth with me as I ask questions. She has challenged me! Her son, Ben, has Cerebral Palsy (same type as Nina) and I have learned from their journey.

I came to realize, that I was treating Nina like a baby in the places where her disability is obvious. Carrying Nina is our normal, but it can become a bad habit that hinders her from becoming independent.

Nina's Cerebral palsy affects her mobility the most, and I have been so frustrated by her lack of desire to walk, that I never realized that I was treating her like a baby in the very area we struggle with! So if she needed to go potty, I was picking her up and carrying her to the toilet.

Not anymore. Success is found in the small things, one step at a time.  Now when she tells me she has to go potty,  I simply tell her to go. All I do is make sure that the toilet insert is on, but I expect her to do the rest. Kids her age do it, and so will she. It takes her a really long time. Her potty trips average 15 minutes, but that is okay, she is so proud of herself. If we go somewhere, I expect her to walk for as long as she can while she holds my hand or uses her walker. She actually has come to prefer holding on.

This new way has made life easier for me, less demanding physically. On the other hand,  it has made it more challenging and physically demanding for Nina, she is being pushed.And while there are times where we have to help her, those are amazingly fewer that I thought.

And the results from this change?

Nina said today, while she was taking off her shoes and braces, all by herself, "Mom, I wish I could walk. I want to walk"

Her words touch my heart and bring me to tears. That statement right there, speaks so much more than the actual words. She wants it, she really wants it!


  1. It is so easy to fall into this trap. Often the things I do for Oksana are for my own convenience. It makes things faster and/or easier. I'm constantly trying to find those areas where she really can be independent and encourage that while still not expecting her to be independent in an area that she isn't ready for yet. It's a hard balance! I'm thrilled to hear of Nina's desire to walk. I can only imagine your joy at hearing those words!

  2. That is so awesome! I love hearing this!!!! Way to go Nina...and Way to go Ellen!

    And thank you so much for the lovely shout out. We are all in this together and the best experts are the moms that are dealing with the same stuff. I am just beyond thrilled that I managed to help another mom. Really cool.

  3. glad that things are better


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