I hope to share more formally about our adventures in communication with June, specifically the use of American Sign Language, verbal speech development, and her assistive communication device. However, for a few months I've been savoring some much needed rest and protecting a "margin" against over-busy-ness in my life and that of the kids, which … Continue reading Adventures in Communication
I mentioned recently that I finished the "Crazy Heart Block Quilt" that I started for June last summer while she was recovering from her LTR surgery. Here's a peek at it and a few things I learned. I didn't know if my kooky idea for this quilt would work at all, because in order to do … Continue reading Crazy Heart Block Quilt- Complete!
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
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
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)
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.
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
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
What? Our daughter now has Medicaid coverage in addition to our private insurance. I am writing about it for two reasons. First, it is a link between my previous post in which I explained why we declined home nursing for two years, and my next post in which will explain why we are reluctantly seeking it again; … Continue reading Secondary Medicaid: Our Story
I've wanted to write this post- about why we declined home nursing- for a long, long time. But it is a complex, hot-button topic in the special needs community, and honestly, even thinking about our brief 3-week experience with home nursing makes me exhausted. I am writing now because soon we may have a limited … Continue reading Declining Home Nursing