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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

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    This topic has 6 replies, 5 voices, and was last updated 3 months, 2 weeks ago by Michael Casten.

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      • #19757
        Krystal
        Participant

        My Type 2 daughter is 19-months old. She is currently in diapers. She tells me almost every time whether she’s peed or pooped AFTER she’s done it. Her diaper is also dry after her daily nap and she doesn’t need a change at all throughout the night. I wanted to know when is the best time for potty training, and how your parents got you potty trained! Or for those who are SMA parents, what did you do to get your kid trained? Tips and tricks?

      • #19771
        Kevin Schaefer
        Keymaster

        Hey Krystal!

        I just asked my Mom about this, since I obviously don’t remember when I was potty-trained. She said she did the same thing she did for my able-bodied siblings, and we were all trained around the age of 2 1/2 to 3. You’ll probably want to look into getting a good bathroom seat for your daughter, but other than that the process is the same. Just let her sit there until she goes, and make sure she has good support.

        She also jokingly said that the difference between potty training me and my siblings, is that I couldn’t just get up and leave the bathroom before I was done lol. (Sorry, a lot of SMA people have a twisted sense of humor.) But seriously, my Mom and my sister potty trained my 2 year-old niece recently, and the kid would barely sit still for a couple minutes.

        • #19787
          Krystal
          Participant

          Thanks for your post! Perhaps I have a dark personality, but I thought your comment was funny so I didn’t think your humor was “dark” 🙂

           

      • #19783
        DeAnn R
        Keymaster

        Krystal, sounds like you have a smart cookie on your hands if she’s already letting you know she’s filled her diaper. I’m not positive when Mom said she potty trained me, but similar to Kevin’s experience my Mom said it was a breeze with me because I couldn’t go anywhere. She’d just set me on the potty and when I went she’d take me off. Getting off the potty was my reward for going so I caught on pretty quick.

        Not to say it’s that easy for everyone. A lot of parents have issues with their toddlers not wanting to stop what they’re doing or because the bathroom process takes too long. In those cases I guess you just have to reiterate the sooner they let you know they have to go the quicker they can get back to fun. If they don’t maybe playtime gets cut short? Probably easier said than done. Have you read Shane Burcaw’s book “Laughing at My Nightmare?” He details his experience as a child. It took an embarrassing moment and a mamma that held him accountable to stop the accidents.

        • #19788
          Krystal
          Participant

          OF course I read his books! 🙂 It has helped me feel better about my daughter’s future and to remember to laugh and just live life!

      • #19786
        Rachel Markley
        Participant

        According to my mom, I was 2-2 1/2. I was easy to train after I was ready and it was my decision lol. I think she said seeing others at preschool not have to be changed helped a lot. Made me decide it was a good idea!

      • #20315
        Michael Casten
        Participant

        We potty trained our daughter (SMA Type 2) just as we trained her unaffected siblings. The process was quick as she picked up on it readily. Now that she’s nine we have her in diapers overnight, when we take long trips, or will be away from her for a length of time. She seems to have go to the bathroom more often than her siblings…not sure why, though.

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