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My daughter Francesca

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  • #16
    I just checked sbaa education days and the closest to you appars to be in John Hopkins in Baltimore on June 1


    • #17
      I do not have SB but my disability occurred at birth and is significant. The biggest piece of advice I would give any parent with a child who has a physical disability is to try not to treat them differently. My mother never allowed me to use my disability as an excuse for anything.

      For example, I remember one time in HS I was getting ready and had some bowel difficulties. As a result I missed the bus. My mother drove me to school however, she refused to write me a late pass. Her response was I needed to prepare for these types of "hiccups" in life.

      Because of her hard nose ways I am a highly educated, mature, and successful individual. A few years back she and I were discussing this and she told me it was extremely hard for her to not give in and run to my aid every time I ran into hardships. I thank her tremendously for being so strong.

      There is no such thing as a stupid question but there sure are a lot of inquisitive idiots. -modified from


      • #18
        kasia-What lesion is your DD? Where does her sensation end?
        What's a good sport for Francesca to get into, considering her lesion?
        Last edited by etv78; 05-16-2013, 12:18 AM.


        • #19
          I'd have her see a good child neurologist/physiatrist. If she's attempting to crawl she may benefit from a course of rehab. Since myelin continues to grow until about the age of 3 years maybe start her off on a stomach scooter.
          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


          • #20
            I asked their expets some of my questions, and signed up for their newsletter.