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    • #16609
      DeAnn R
      Keymaster

      At 39 years old I still have a close relationship with my Mom.  Although I live independently I still rely on her not only for parental advice, but also occasionally my cares.  In a few days she has an appointment in a bigger town.  I offered to go with to keep her company for the ride and she could just drop me off at the mall during her appointment.  She agreed, but said she’d worry about me.  With a goofy look on my face I asked why.  She didn’t really have an answer except that I’d be alone and there’s cooks in the world.  I reiterated I’m 39 and will have my cell phone so all will be fine.  Kidnapping was never something I was ever concerned about even as a teenager.  First of all they’d have to figure out how to unbuckle my seatbelt.  After that I just think it’d be too much of a hassle.  The thought has crossed my mind some scumbag could easily steal my purse, but if they have to steal from a disabled person that would be pretty pathetic.  I know it’s natural for parents to worry about their children, but I don’t think most would worry about their adult child going to the mall.  Do you have overprotective parents?  Do you say or do anything to put their mind at ease?

    • #16611
      Kevin Schaefer
      Keymaster

      Heh, this reminds me of when I first started college, and my Mom and I had to have conversations with my Dad about this exact subject. At the beginning of my college career, my parents were my only caregivers, and I was a commuter throughout college (NC State is only 15 minutes from my house).

      When my Mom picked me up from campus, she’d wait in our car and understood that I was fully capable of getting to the parking lot myself. And if I was ever stuck, I could text her or ask someone for help.

      My Dad, bless him, would come inside the student center or cross the street to meet me right as I got out of class. We had to have some conversations and help him understand that I was fully capable of getting to the van on my own or with a friend. Heck, I regularly went across campus on my own. I understand that being a little overprotective is a natural thing for SMA parents, but sometimes you have to put your foot down and remind Mom and Dad that you’re an adult. I talk about my parents all the time with my friends, and I’m happy to introduce them. But yeah, Dad’s gotten better at letting me do my thing when I’m out, and he knows that I’ll let him know when I need help.

    • #16621
      Ryan Berhar
      Keymaster

      My mom and grandma have always been quite overprotective, but in different ways. My mom has always been petrified of germs. While yes, germs are extra dangerous for me, it was at a point where she wouldn’t let me do things like go to Starbucks with MY DAD (not some irresponsible kid or something) during cold and flu season. This was even when I was an adult. Fortunately, she has loosened up significantly, and never gets in my way anymore. I’m not sure what caused the change, but thank God it happened.

      My grandma doesn’t worry so much about germs (mom does enough of that, even still) but she worries about pretty much everything else. Mostly my overall safety, similar to DeAnn’s mother. Basically, she just worries that whomever I’m with will neglect me somehow.

      It’s really tough, because I understand the overprotection, but I also don’t want them getting in my way. One thing that helps me is my dad. I swear he has literally never worried about a thing in his life, so he’s been a great advocate for my independence. He’s often the voice of reason.

    • #16626
      Adnan Hafizovic
      Participant

      We have same parents,overprotective.My parents don’t allow me to go alone in city and what i was doing?I went in city without tell them few times and when they saw that i can go without any problems,they agreed with my decision.I did not have problems with my father ,he was always with me and he always supported me, but unfortunately he died. I am grateful to my mother for my care, but sometimes she care too much,Especially if I go out with a girl, she always finds some trouble for that girl, and that really get me nervous.

    • #16641
      Kelly Miller
      Participant

      Fortunately, my parents were always very encouraging for me to be independent. I remember when I was 6 years old, they dropped me at Easter Seals Camp for a 2 week overnight vacation! All of the other girls in my cabin spent the 1st several nights crying for their parents. I had no problems with homesickness, and in fact, I was extremely happy to be “on my own” for such an extended period of time.

      As far as during adulthood, the person who’s been the most worried about me is my husband, Jack. When we 1st moved in together, he was extremely hesitant to leave me at home by myself (this was right before cell phones.) I finally talked him into going ahead & signing up for a class at night so he could finish getting his college degree. Well, that didn’t turn out so well because the 1st night he was gone I fell over on my legs, causing my chair to bump into a dresser & keep trying to go somewhere. I ended up burning out the motors (back in the day when you had the motors with pulleys & belts) by being like that for 3 hours! The problem was that I was so used to people being around (when I lived with my parents, in the dorms, or had friends over) that I didn’t take proper precautions and make sure I did things carefully & safely. This caused me to take a risk of reaching for something when I should’ve waited until he came home. It was a bone of contention between us for a bit because it was too late for him to drop the class and get his money back. He insisted I invite a friend over each night he was going to be gone for at least the rest of the semester. I didn’t argue too much because I had caused the situation myself by not being careful. I guess there are things that we have to adjust to just like there are things those who love us have to adjust to!

      I’m glad to say Jack is okay now with me being by myself, especially with cell phones, my set up of my computer system, & Alexa right at my disposal. He did start working from home a few years ago when I got my feeding tube & SPC and started taking more meds for pain. He really doesn’t trust anyone else to take as good care of me as he does. I think it’s sweet, and when it goes a little too far, I just gently nudge him in the other direction. We have made it work for almost 22 years (24 if you count living together before marriage), so we must be doing something right!

      • #16653
        DeAnn R
        Keymaster

        Kelly, my parents in general were always supportive of my independence.  My dad passed away a few years ago and I always felt he was more skeptical that I could make a go of it on my own than my mom was.  That’s kind of why I was surprised by her reaction.  It doesn’t stop me though.

        I’ve definitely learned to be more cautious when I’m on my own.  One time I got stuck outside after getting the mail because the ramp was icy.  Luckily I was able to take refuge in my garage until someone came to the rescue.  Now I just have my PCA bring in the mail in the winter.

        It’s nice to have someone that’s concerned about you though.  Glad you’ve found a good balance for you and your husband.

    • #16721
      Krystal
      Participant

      My daughter is only 14 months old, so there’s no way for me to know if she thinks my husband and I are being overprotective parents. However, my husband and I have been more protective of her than before she was diagnosed. For example, before we knew she had SMA, we encouraged her to be around kids her age/kids in general as much as possible so she can gain social development. If one of those kids had a runny nose or cold? Cool. Fine. She can build up her immune system with more germ exposure.

      Once we found out she had SMA, my husband and I have been struggling with finding that balance of reminding ourselves that she is still a baby and needs to be a baby vs everything else about SMA. We are focused on her exercises, maintaining appropriate nutrition, swallowing reflexes, adequate fluids and sleep, her breathing, her dirty diaper count, and so much more. I DEFINITELY admit to being more protective of her in regards to germs during this season as well, as flu incidents and pneumonia have increased in the area. We kept hearing from healthcare professionals and SMA families that regression kicks in faster when kids get sick because they don’t want to move, or eat, or do anything but sleep and be fussy, and it’s hard for them to get better when they’re not getting in all the things they need.

      It’s also ironic I ran into this thread, because for the past couple days, the weather changed from like 70 degrees F to 21 almost overnight. Since then, my daughter developed a runny nose that turned into a stuffy nose this morning with difficult time breathing through her nostrils (her secretions have  remained clear, with clear lungs, no fever, acts normal and happy but rubs her nose often), and my husband texts me this morning: “Let’s give her Pedialyte and a bottle since it’s easy for her to drink out of, and maybe give her guaifenesin, and  lots of milk to keep her nutrition up, and I think we should call the neurologist to see what we could do to help her get better…”

      My point is, my husband and I have both been overprotective lately, even overreacting. I think, once we get a better grasp of SMA and how we can make it a part of our lives, then I’m sure we won’t be as crazy haha (in the end we both thought we were being over the top and decided to monitor her and offer lots of water to thin her secretions).

      Awesome post!

      • #16755
        DeAnn R
        Keymaster

        Krystal, sounds like you’re being awesome parents.  It’s a hard balance to strike.  Although being cautious is good, as Kelly mentioned kids get sick.  My Mom didn’t find out I had SMA until I was around 18 months.  Looking back she says maybe that’s why I was sick all the time.  Guess I  had a cold 2 months after they brought me home.  Luckily there are a lot more products and resources available now when we do get sick.

        I think it’s a parents prerogative to worry.  It shows you care.  Be prepared for a few eye rolls from your daughter though.

      • #16757
        Kevin Schaefer
        Keymaster

        Hey Krystal, thanks for sharing!

        It sounds like you and your husband are doing everything right. Being a little overprotective when your child is still a baby is totally understandable, and it’s kind of the way it should be. It’s more when kids with SMA grow up, I tend to see different kinds of parents and parenting styles at SMA conferences. Like I said, parents of kids or adults with SMA are always going to be a little overprotective, but you have to have a balance. It does irk me when I see parents who won’t let their SMA kids do anything on their own or be social enough, especially when their kids are grown up. I can’t imagine how hard it is to do this from a parent’s perspective, but it’s necessary.

        Again, it sounds like you’re doing fine, but feel free to ask if you ever have any questions.

    • #16735
      Kelly Miller
      Participant

      Krystal, oh my gosh, it is absolutely understandable that you & your husband would be a little overprotective of your baby girl having just been diagnosed with SMA! I think we all here get it – especially with a 1st baby.

      I’m not here to give you advice but to simply validate your concerns as an SMA mom. It’s good to keep her away from other kids who have colds & other type infections. That being said, it’s going to be next to impossible to keep her completely free of germs and totally secluded from other kids who might be sick. Sometimes, without even realizing it, she will have just had a 2 hour play-date with her bestie who, you find out later that evening, has the beginnings of bronchitis! It happens to me all the time. We can’t lose our minds over all of the possibilities that could happen or we will never leave the house.

      It sounds like you all have a wonderful team concept that keeps a balance between freaking out & being nonchalant. When he tends to go over the top, seems like you are able to pull him back a little bit. And, I’m sure, it works in reverse as well. This sounds like a responsible way to parent, keeping your child safe while at the same time allowing her to develop as any other child (within reason). Don’t worry SMA mom – you’ve a handle on this! It’s always good to check these forums if you have any questions. You’ll hear a lot of things on both the parents’ pages and our pages, just remember to take it all with a little pinch of salt.

      Keep doing what you’re doing, and keep us posted on how that beautiful little girl is doing!

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