The Accidental Sabbath: Plans for 2017

The last third of the year can become unenjoyably busy for our family very easily, with ten family birthdays and our anniversary sprinkled in among the bustle of Halloween, Thanksgiving and Christmas.  So in 2016 Greg and I resolved to designate one day from each weekend in October, November and December as an "at home … Continue reading The Accidental Sabbath: Plans for 2017

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Are *You* My Service Coordinator? The STAR Kids Switch

On November 1st, Texas implemented STAR Kids, a managed care system for Medicaid benefits.  (See here for an explanation of how and why medically complex kids like June have secondary Medicaid.)  Like most families, we could not get any specific information about the change before it occurred, like whether eligibility requirements, family responsibilities, affiliated doctors/hospitals/nursing/DME companies, … Continue reading Are *You* My Service Coordinator? The STAR Kids Switch

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

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 Family Outings: What Worked (for us)

We will end the special needs family outing series with two fun posts: what worked for us when travelling near and far, and what didn't.  I am excited to share this because as I mentioned in the first series post, we've done a lot of adventuring this summer! Here are a few of our travel … Continue reading Special Needs Family Outings: What Worked (for us)

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

Special Needs Family Outings: Boldly go. Or not.

For many people, summer is a time to escape the house to see friends, explore nature, visit local attractions and travel near and far.  Planning these outings is a worthwhile but complex undertaking for any family.  But having a child with special needs adds several more considerations to the decision making process.  Our family has been fortunate … Continue reading Special Needs Family Outings: Boldly go. Or not.

Special Needs Record Keeping

Parents of medically complex children handle reams of paperwork- that which we review, sign, and much of it we are given to retain for our records.  It's all part of our secret part-time job.  My rule of thumb for filing vs recycling is that if it can easily be found on the internet or in … Continue reading Special Needs Record Keeping

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