• Sponsored Post

    Planes, Trains, & Accessible Travel With SMA

    Talk to your doctor to determine if you or your child is fit to travel.

    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

    I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

  • This topic contains 5 replies, has 3 voices, and was last updated by  Ryan Berhar 2 months, 1 week ago.

    • Author
      Posts
    • #19310
       Brianna Albers 
      Keymaster

      Hi everyone! My latest column is up. In “Learning Self-love from My PCA’s Daughter,” I talk about my relationship with Elena, my PCA’s two-year-old. She and her mom have been coming here for about a year, and I’ve really enjoyed getting to know them. Elena is shy, but over the past couple of months, she’s really warmed up to me. When she’s not holding my hand, she’s pretending to braid my hair; when she’s not braiding my hair, she’s counting the moles on my arms.

      It occurred to me last week that Elena is one of the few people who is willing to touch me. Touch is one of my love languages, but because I’m in a wheelchair, I’m more or less touch-starved—other than my parents, Elena and her mom are the only people who touch me on a regular basis. It just served to remind me how important it is for human beings to experience platonic touch.

      Do you have platonic touch in your life? Is it something you enjoy?

    • #19337
       Tracy Odell 
      Participant

      Hi Brianna,

      Great topic! It’s so true that when sitting in a wheelchair, you don’t get the same kind of casual touch as you would if you were walking around – somebody just bumping into you or nudging you or giving you an affectionate hug. I don’t let people hug me unless I have given them a brief lesson in how to do that without making my head fall over. That way, I can actually enjoy their hug!

      I also enjoy the innocence of young kids when they treat me like a play object. When my great-nephew was visiting recently, he was using parts of my wheelchair and my arm as a runway for his toy car! He didn’t hesitate at all and it was really the first time that he had a chance to interact with me. Very few adults would feel at ease with me so quickly.

      When I have been able to, I have had massages which are a really nice way of getting touched that doesn’t feel clinical.

      • #19383
         Brianna Albers 
        Keymaster

        Elena does that as well! She’s started using my footrest as a stepping stool and my phone holder as an armrest. Massages are great! I get them biweekly for my tension headaches and they’ve really forced me to come to terms with some of my “touch issues” 😂

    • #19340
       Ryan Berhar 
      Keymaster

      How sweet. I definitely relate to being “touch starved” as you put it. The trouble is I generally hate being touched, because it’s pretty much always care related. A simple hug or handshake would be nice, but both are essentially impossible.

      • #19384
         Brianna Albers 
        Keymaster

        I totally get that. Do you have caregivers that would be willing to touch you every once in a while in a non-assistance context? My PCA read the column above and gave me a long, full-body hug, which was nice.

        • #19385
           Ryan Berhar 
          Keymaster

          I’ll give it some more thought

    You must be logged in to reply to this topic.

  • Videos

  • ©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

    CONTACT US

    We're not around right now. But you can send us an email and we'll get back to you, asap.

    Sending
    or

    Log in with your credentials

    or    

    Forgot your details?

    or

    Create Account

    Copyright © 2017-2019 All rights reserved.