Special Needs Family Outings: What Didn’t Work (for us) Part 2 of 2

Today we conclude the special needs family outings series with the second part of the discussion on what did not work so well for us (see part 1 here).  Here we'll share difficulties we encountered during two of the most challenging travel situations we have faced: flying and handling a medical emergency away from home. … Continue reading Special Needs Family Outings: What Didn’t Work (for us) Part 2 of 2

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Special Needs Family Outings- What Didn’t Work (for us), Part 1 of 2

We conclude our special needs family outings series with a discussion of what did not work so well for us when traveling.  I've divided the post into two parts, the first being an assortment of issues/examples and the second will cover difficulties we had while flying and handling a medical emergency away from home. We try mightily with … Continue reading Special Needs Family Outings- What Didn’t Work (for us), Part 1 of 2

Special Needs Outings: Misunderstandings and Judgments

This series focuses on special needs family outings: what goes into the decision and what comes out of it.  The last post featured two mall outing opportunities that appear identical, but are actually on opposite ends of the spectrum when viewed from a risk assessment perspective.  Consequently, one invite was accepted and one was declined, which would be puzzling to … Continue reading Special Needs Outings: Misunderstandings and Judgments

Special Needs Family Outings: Decision Making

Today we continue the series on special needs family outings, including vacations, day trips, or even simple play dates.  Special needs families have extra considerations when planning an outing, and people outside of the family are often unaware of what those extra considerations are, or even of the fact that they exist.  Without this information, outsiders … Continue reading Special Needs Family Outings: Decision Making

Nursing Update: On the Myth of Helplessness

We have had home nursing for a little over a month. We use only 2 shifts a week, intended for 'respite,' or a break for us.  So, as of the middle of last week, we had had a total of 8 nursing shifts so far. And I truly didn't think I could handle having nursing anymore. … Continue reading Nursing Update: On the Myth of Helplessness

Mom Problems: Meal Planning

I'm not sure what changed or when.  For years I was good at meal planning.  I made a master list of all of my favorite recipes for everyday use, for entertaining and for quick/no-bake options.  I composed weekly meal plans for several months at a time.  For a while I juggled a mixed vegetarian and carnivore … Continue reading Mom Problems: Meal Planning

The Home Nursing Analogy: Why we are reluctantly seeking some nursing again

Recently I wrote about why we declined home nursing for the past two years, and a little about the mammoth of a topic that is being awarded secondary Medicaid.  The fact that Medicaid requires us to use at least some nursing hours is a big reason why we are seeking it despite the long and varied list of … Continue reading The Home Nursing Analogy: Why we are reluctantly seeking some nursing again

The Big Rocks: Self-Care for Caregivers

The past month has been a vast improvement over our overwhelming December. The solutions I mentioned in the last post were a great success, especially potty training progress and toy rotation. Also, while Greg and I normally have the luxury of relaxing after the kids go to bed, last month we each committed to doing … Continue reading The Big Rocks: Self-Care for Caregivers

Wow: An End-of-the-Year Sigh.

The last month and a half has been difficult. It's not the kind of difficult that needs fixing, it's just one of those periods of rough transition that inevitably comes and must be weathered in order to emerge with the tools you need for the next season. I call this a 'desert time,' referring to … Continue reading Wow: An End-of-the-Year Sigh.

A Day in the Life, Updated #1day12pics

One of the most frequently pinned posts here is A Day in the Life, in which I describe a typical day for us as a family with a medically complex child. So much has changed since I wrote that a year and a half ago- June is walking, climbing, and communicating (signing), she has a … Continue reading A Day in the Life, Updated #1day12pics