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    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.

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  • 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 11 replies, has 4 voices, and was last updated by  Adnan Hafizovic 6 months, 1 week ago.

    • Author
      Posts
    • #16821
       Kevin Schaefer 
      Keymaster

      Hope everyone had a great weekend!

      So as I mentioned in a previous post, I just started working with a new caregiving agency, in order to acquire a caregiver to work Saturday mornings. I worked with this person this past Saturday, and it went quite well. This woman was really competent and had a lot of experience in healthcare. I’ve been really impressed with this agency so far.

      Nevertheless, training a new caregiver is always anxiety-inducing for me. I’m fine with Spinraza injections, speaking engagements, traveling, and a host of other things that might make other people nervous; but when it comes to working with a new caregiver, I always dread the experience at least some. Especially with my morning routine, it’s exhausting taking someone new through each step and making sure that they do everything correctly. I also worry about personalities blending and all of those things as well.

      Again, I’m glad this one worked out, but it’ll still take some time before she gets my routine down without any help. My Dad was there Saturday to help show her the ropes. She did really well with getting me in and out of the bathroom and showered, and my Dad didn’t even have to help there. The challenging part was getting me from my bed to my wheelchair, and then situated in my chair with my catheter on. This part will probably take some time to really “master.”

      Do you all have these anxieties as well? Do you have any specific strategies for training a new caregiver and making them feel welcome? I always feel like I’m overwhelming them at first, especially because my morning routine and the way I have to be handled is so specific.

    • #16836
       DeAnn R 
      Keymaster

      Training a new PCA is among my least favorite things to do, and yes causes lots of anxiety.  Today I had my new PCA doing the routine totally on her own.  As like you the trickiest part is getting comfortably (and safely) back in my chair.  Everyone does things just a little differently so I try to figure out what’s the best and easiest way for her to do things.  It’s tough to have an actual conversation too because you have to be directing them the whole time.  I can’t imagine how difficult it would be if I wasn’t able to direct them.  Some things though you can’t teach, so you just have to get used to their style.  Finally when you think you have everything “mastered” as you say you usually have to do it all over again.

      • #16837
         Kevin Schaefer 
        Keymaster

        Right??! Like it’s worth it, and I’m just glad I finally have someone for Saturday mornings, but no matter how many times I do this song and dance it’s always frustrating. I am glad that this person was really competent though and listened well. That’s definitely not always been the case.

      • #16843
         Ryan Berhar 
        Keymaster

        DeAnn, that’s something I often think about—how everyone does everything slightly differently. It’s not necessarily even a bad thing, it just takes time to get used to all the subtle differences between caregivers. Even my family, whose been taking care of me for almost 23 years, have to be reminded of certain things. It’s just interesting.

    • #16856
       Adnan Hafizovic 
      Participant

      It would be good when we find an adequate caregiver, that this caregiver is with us for a longer time.But that is hard.

      • #16865
         Kevin Schaefer 
        Keymaster

        I’ve been fortunate in this regard, in that my primary caregiver has been with me for the past four and a half years. It’s rare for any CNA/PCA to stay that long, but I’m very blessed. Most of the time you have to be flexible and willing to work with multiple people.

    • #16886
       Adnan Hafizovic 
      Participant

      You have luck Kevin and it is easier for you,when your caregiver knows what you need.

    • #16996
       Kevin Schaefer 
      Keymaster

      So this agency sent another person yesterday, and she was even better than the caregiver I had last week. She had a ton of experience with ceiling lifts, and really she needed minimal assistance from my parents when it came to learning my routine. It was refreshing to say the least. Weekend caregivers are especially hard to find, but this agency is working out great. Just wanted to share this as encouragement to everyone out there. If you’re trying to hire more caregivers and gain more independence, don’t give up.

    • #17029
       Adnan Hafizovic 
      Participant

      Kevin who are better caregivers, males or females?

      • #17036
         Kevin Schaefer 
        Keymaster

        Adnan I’ve had good and bad experiences with both male and female caregivers. Some prefer to only have caregivers of their same gender, which I get. I don’t really mind as long as they’re good.

      • #17079
         DeAnn R 
        Keymaster

        Adnan, it’s really a personal choice. Since I live on my own I feel more comfortable having same sex caregivers. When I’ve had hospital stays I had both male and female. Both have positives and negatives. I’d say guys have more physical strength so positioning is a little easier, but women are more detail oriented. Just my observation though.

    • #17082
       Adnan Hafizovic 
      Participant

      I have same opinion,for lifting is better male caregiver but women are more gentle.

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