Does the world have realistic expectations of #SpecialNeeds Parents?

This is going to possibly rub some people the wrong way but I think it’s important to discuss, nonetheless. 

Do you think that the world has realistic expectations of Parents?

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This is a pretty simple question but the answer is likely very complex and and anything but simple. 

I happen to personally feel that the world is largely out of touch with what special needs families contend with on a daily basis. 

I also happen to think that the world tends to not cut special needs families a break either.

I don’t feel like everyone is looking for a free ride, although perhaps some do.  Speaking for myself, I would just really appreciate a level playing field.  I’m not really sure how to do that but perhaps taking my situation into account when making up the rules, would be a fair place to start. 

So what do you think?

Does the world have realistic expectations of Special Needs Parents? Why or why not?

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  • Kim Gebhardt

    I don’t know what you mean by a level playing field or what expectations you want the rest of the world to have. You understandably look at the world through they eyes of a parent, but it really does seem sometimes like you think that the rest of the world has it super easy with no problems whatsoever because we don’t have special needs kids. And while that might be true for some, it’s not true for others. I may not have raised special needs kids this year, but do you know what I HAVE done?

    surgery to remove cancer
    another surgery to remove more cancer, and this one cut me hip to hip and gave me a 3 day hospital stay
    7 weeks of chemotherapy
    7 1/2 weeks of pelvic radiation
    DVT
    cellulitis because of the radiation
    The death of my mother

    I have driven countless miles for medical treatments and doctor’s visits. I have spent many, many dollars on co-pays, deductibles, prescriptions, and out of pocket expenses. I have done it all while holding down a full time job and doing the best I can to take care of aging parents who can’t always drive themselves to their appointments or completely understand what doctors are telling them so I make sure to be available. Is that the level playing field you’re looking for? Because I wouldn’t wish my last 10 months on my worst enemy.

    Everyone has their own problems, Rob, we just don’t all blog about them.

    • Kim,

      I’m really sorry to hear about all of that. Especially, the loss of your Mother.

  • mo

    What exactly would ‘level the playing field’ for you? You already don’t work or pay medical expenses. I’m not sure what you think life or society owes you here.

    • That’s pretty harsh… I was simply asking the question of others.

      For the record, I was a paramedic/fire fighter for many years. I ran thousands of calls and saved countless lives.

      I was first in line to travel to New York for search and rescue efforts or to help man stations after 9/11.. but we were never called.

      I ended my career after a devastating back I jury that left me in constant pain for almost a decade. I suffered that injury while helping to carry a pregnant woman, who was bleeding out, down a flight of very steep steps.

      I risked my life every single time I went on a run. I’ve earned the assistance I do receive. When I had private insurance, and I did, it wouldn’t cover anything ..

      Raising one child is considered a full time job, in and of itself. Leveling the playing field could be anything from not having to battle for every single service my kids need. It would mean that people would better u Der stand why things are so challenging and maybe cut me a little slack.

      Maybe it could mean that people would be less likely to judge and more likely to offer support, even in the form of kind words.

      • Braden

        Honest question…do you think that the diagnosis should come with some sort of additional benefit? (Financial or otherwise)?

        As Kim mentioned above, everyone has it tough…I can’t see a scenario that would work with us playing favorites with a group that is subjectively considered ‘more deserving’ of assistance and consideration.

        • It’s not about playing favorites it’s about simply having reasonable expectations.

          My focus was on parents but it could be applied to all demographics.

          I was just saying that I don’t feel the world has reasonable expectations of Special Needs Parents. I stand by that.

          I never said anything about getting things for free. I just wish that sometimes everything going wasn’t an uphill battle.

          How to level the playing field was something good I was trying to get others opinions.

          This has been twisted into something it wasn’t meant to be. It was directed at other special needs parents and I don’t expect others to “get it”.

          Thank You for your honest question. I’m not sure if I answered it but if you detect any frustration in my response, it’s not directed at you… ☺

          • Kim Gebhardt

            But what expectations would you like that world to have? Define ‘reasonable’, if you will. I’m trying to understand what you feel would be helpful in terms of what is expected of you but I’m having a hard time.
            As far as a level playing field, I don’t think such a thing can exist.

            • How about compassion. If the world had more compassion for anyone struggling, life would be better for everyone

              • Kim Gebhardt

                I don’t disagree with that at all. I think the problem comes in with what is considered to be ‘struggling’. That’s one of those things that is very subjective and based on one’s life and attitude. You might consider getting Emmett to wear socks a struggle whereas it’s not as big a deal to the next person, but that person might think getting a flu shot is a huge deal while you and deal with twice-weekly infusions and a flu shot is nothing. It’s all relative.

  • Shari Murphy

    As a parent of two “typical” children who are quite a lot older than my two with special needs, I have parented in both situations. There definitely is not a lot of understanding of what we go through on a day to day basis. And obviously, I am aware there are challenges with all children. But it is definitely different, a whole different ball game, with children with special needs.

    • Braden

      So what would ‘leveling the playing field’ look like? Im quite certain that is difficult, but what I don’t see is what else could be done?

      • There’s a ton of things that could be done. You have to understand that almost everything in the life of a special needs parent is a battle. Even with state insurance, you have to fight for everything. Insurance companies should be forced to provide services for kids with disabilities period.

        It’s very rare that a special needs parent will feel their child is appropriately cared for within the public system.

        We have these things call that can turn into battles because schools want to do the bare minimum required by law and our kids often need much more than that. Some school are amazing though.

        These are just off the top of my head..

        It’s not about money or getting things for free. It’s about having the same opportunities for ourselves and our kids. The reality is, that’s not very often the case.

        I mean no offense by this but it’s not something easily understood unless you’re knee deep in a special needs child.

        • Braden

          No offense taken, I asked you answered. From the other side of it…I think the public system bends over backwards for the special needs kids of the school..and yes, sometimes to the detriment of the other kids. In one school district I lived in, parents would go out of their way to have their kids classified just to take advantage of services offered to only families and children with special needs.

          Obviously this is my experience with it, I’m sure each area is different…additionally, I do know that since 2011 or 12 that most private insurance companies are covering more and more in this space

          • Shari Murphy

            I have to say, we have been very lucky with the system we are in. They have been wonderful with all of my children, special needs and not. It is still a difficult situation. I am a single mom, and low income. I do work, and I have worked pretty much non-stop, since my oldest, who is 19, was about six months old, and it became apparent that her father (my husband at the time) was not responsible enough to provide for us. If I could turn back time, believe me, I would have finished college when I had my full tuition scholarship right out of high school. Perhaps then I wouldn’t be struggling. Poor life choices. But then I wouldn’t necessarily have my four children, all of whom I love more than life itself. And I am attempting full time college courses online to try to better provide for us. So, I’m really trying. But right now, we have Medicaid. And I am so grateful for that, because most of what my children need, medically, is covered. But I know people who have other coverage, who are not low income and have to purchase insurance, and their coverage is terrible. It’s almost like the system wants to keep you down. I would really have to triple my income, at least, to make up for what medical insurance would cost, with deductibles and copays.

    • That’s sorta the point I was trying to make. Thanks for your words… ☺