Our Family, Gov’t Style (Silly)

Our Family, Gov’t Style (Silly)

We have three people in our home, Mom (Me), Dad, and the Toddler. I’ve realized lately how much our family function resembles the structure of the U.S. Gov’t. Weird I know, but allow me to explain. The Toddler is most definitely President of our family. I’m Congress, both branches (I do what I want, or so I tell myself). Dad is the Supreme Court.

Mr. Toddler has the astounding ability to veto each and every rule I attempt to issue. He didn’t use this power quite so frequently, but as we reach the terrible twos it’s an almost constant battle. Thankfully, I can override vetos since I’m the ENTIRETY of Congress all wrapped into one (take that, partisan brinksmanship). I do have to be a little careful because the Toddler is not very fond of having his vetos overridden, and doing it too frequently results in even more vetos (meltdown, yikes). Don’t even get me started on executive orders.

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10 Signs You’re a Parent of a Tubie

Thought some of you moms (and dads) would enjoy this. Please share it with others that need a smile.

  1. Some sounds will wake you out of a dead sleep and will probably continue to do so for a long long time, if not the rest of your life. The high pitched beeping of a medical grade pump, for instance.
  2. When you have to give medication to a child without a feeding tube, or they have a belly full of gas. You won’t really wish they have a feeding tube, but you’ll think for at least a brief moment you would be able to help them a lot more if they did.
  3. The idea of dropping your child off at daycare is foreign to you. If you leave your child with anyone, they’ve gone through at least several days of training to make sure the caregiver isn’t going to cause an emergency room visit.
  4. You don’t wait more than an hour to be seen in the emergency room, because if it’s not something the doctor would be willing to call ahead for you can take care of it yourself at home.
  5. You already know what’s wrong with your child when you take them to the hospital, but the hospital is the only place that can do the things you need done fast enough to prevent your child from developing complications.
  6. It’s no longer surprising when someone implies you’re a bad parent. “Obvious,” solutions for your child’s complex medical problem seem to flow from everywhere. Clearly all of the therapists and specialists you’ve been seeing for years are incompetent and have no idea what they’re doing. They couldn’t have possibly suggested these, “obvious,” solutions when you first started seeing them. It’s not like your child’s medical professionals have experience with these types of problems or anything.
  7. You know immediately whether or not a doctor or resident has read your child’s chart as soon as they walk in the room. They’d look a lot more terrified if they had.
  8. If an elective admission has to be pushed from June to July you ask to be called if there are any cancellations in June or to take care of it in September.
  9. By the end of the year, you haven’t had to pay out of pocket for medical services for at least three months, and for some as many as eleven.
  10. People tell you they don’t think they could ever handle the things you’ve been through with your child’s medical problems. You look at them like they’re crazy, because you can’t imagine anyone doing anything differently. There’s way too much love in your heart for that little angel to let them suffer a minute more than necessary.

Managing Your Stress, Part Three: New Normal

Getting settled into a new routine after a emergency or crisis is one of the hardest things I’ve had to handle as a mother of a special needs child. One of the tricky things about not having a diagnosis is that you never know if you’re looking at a new illness (virus, infection, etc.) or a new feature of the undiagnosed syndrome. It’s happened several times that the new problem has turned out to be another clue to the underlying syndrome and we’ve had to adjust what we’re doing to accommodate. So, that’s all well and good, but how do you do that?

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Managing Your Stress, Part One: Crisis vs. New Normal

This post is part of a three day series about how to handle stress when you’re bouncing back and forth between crisis and calm. I hope you find it helpful. I would love to hear about things YOU are doing to manage your stress.

There are two situations mothers of special needs children find themselves in more often than we would like to admit. The first is crisis situations. Many, although not all, of these land us in the hospital with our already struggling child. Once there, we fight fiercely to protect them from catching something even worse than what brought them in in the first place and engage in a constant power struggle with the hospital staff to let our children sleep. The second is what I call the, “new normal.” This frequently, though not always, comes after a crisis. Something has changed in our child’s condition and it’s changed the way that they and we have to live our lives. Identifying which of these two situations you’re in is key to properly handling your stress level.

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