Category Archives: Mommying

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.

Special needs family outings What Didnt work

 

Flying With a Medically Complex Kiddo

June thought having her own airplane seat was pretty cool when big brother wanted to take a turn as mama's lap baby

June thought having her own airplane seat was pretty cool when big brother wanted to take a turn as mama’s lap baby

Two winters ago, our family made the unusual decision to fly across the country with the kids in the middle of RSV season.  My grandfather had passed away after a long illness, and it was important to our family to join the many people who were gathering to celebrate his life and honor his memory.  In order to do this, we faced many challenges including flying with very young children, having access to June’s medical equipment during the flight, and combating the risk of contracting a cold, flu or RSV in the cramped germ incubator that is an airplane.  One idea we had was to snag the first seat in our section, reducing the number of people we are close to.  That did not work, since we then had no underseat storage ahead of us, and we had lots of equipment to stow in arm’s reach.  Another bright idea we had was to be the last people to board the plane, so we reduce the amount of time we are sitting in stagnant air before the plane’s air circulation/cleaner system is operating (the internet said this was a good idea).  That backfired as well, as the plane was full to capacity and passengers were already having to check their carry-ons because the overhead storage was full.  Along came us, with 6 carry-ons which were all essential.  We stood awkwardly at the head of the plane isle while other people’s luggage was shuffled and checked to make room for ours.  And also so that we could switch seats with some very kind passengers in our section since our spots at the front wouldn’t work for us.  When we were seated, we discovered that the essential items we needed to have on-hand (oxygen concentrator, suction machine, and emergency bag) did not all fit under the seat in front of us, so one item had to be stowed above during the critical take-off and landing times, when we aren’t allowed to stand up. I waited very nervously for those few minutes wondering what would happen to me if June did have an emergency and I had to stand and take out our equipment during that critical take-off time.  Thankfully we had no emergencies on either flight. Lastly, on the flight back, which I made alone with the two kids, Rowan had a loud, one-hour melt-down during which we collected some stares, some sympathetic grimaces, and even some gold fish crackers that a compassionate mom brought to us from another section of the plane.  These things were all stressful, but not insurmountable.  Despite the logistic adjustments during boarding and the tantrum, the kids were fascinated by the flight and we had a really wonderful vacation. While Greg and I enjoyed seeing everyone and having dozens of extra hands helping with the kids, the kids learned about their great-grandfather’s amazing life, met many relatives, played in snow for the first time, and witness vehicles driving on lakes.

Vehicles on frozen lake in MN

 

Local Medical Care Is Inadequate (and everything else went wrong)

June, two days after an unproductive trip to the local ER, recovering splendidly and having fun on our road trip this summer.

June, two days after an unproductive trip to the local ER, recovering splendidly and having fun on our road trip this summer.

When travelling out of our own metro area, Greg and I always look up the nearest children’s hospitals in the event that June needs emergency care since most adult or non-specialty hospitals don’t have the experience and equipment to help her.  During our recent road trip, we were encouraged that we would be close-ish to *the* best children’s hospital for trach patients in the country (Cinncinatti Children’s). But when June developed a bad stomach bug, we were 5.5 hours away from Cinncinatti.  June was getting dehydrated vomiting every 30 minutes, so we decided to seek an IV at the local hospital while we evaluated whether we should make that 5.5 hour hike.  My sister graciously took Rowan for the day while Greg, Miles, June and I went to the hospital ER in the mid-sized city close to the relatives we were visiting.  As always, I warned the nurses that it is always very difficult to get an IV in June, and even moreso when she’s dehydrated.  So, I pointed out the only two sites that are successful for IVs 90% of the time, requested ultrasound assistance in locating the vein, and asked that they not draw blood from an established IV.  Some of the nurses were condescending and short with me, stating that they will use their judgment as professionals, and they proceeded to use sites other than those I showed (which failed), tried repeatedly without the ultrasound (which failed), got an IV with the ultrasound and then drew back for blood on it (which caused it to fail), and ultimately did not succeed in establishing an IV at all. The doctor prescribed June an anti-nausea medication which I refused because I knew from previous illnesses there is a life-threatening interaction between it and her heart medication.  The doctor also ordered a chest X-ray but discharged us before reading it. In short, the ER trip was a torturous waste of our time.  Thankfully, June’s vomiting subsided on its own without complications. But that was just the beginning of our misadventures.

In the hospital Greg and I ran down our cell phone batteries entertaining June and keeping family members updated. Miles and I left the hospital with plans to charge my phone in the car, pick up Rowan from across town then return to pick Greg and June up. But I discovered that my charger was not in the car; it was with the jumble of cords we had unpacked back at our lodging.  As I pulled away from the hospital, my phone died completely.  I didn’t have the address or phone of where Rowan was staying.  I didn’t have a map or GPS.  I couldn’t contact Greg. And after one or two turns on one-way streets, I didn’t even know where the hospital was anymore.  So. I drove in “boxes,” always turning right onto one-way streets to stay in the vicinity until I could find something I recognized.  Finally I recognized a street name, then a landmark, and then, by divine providence…Greg and June, who had exited the hospital and were headed for my former street-parking spot.  And Greg’s phone had 22% battery life.  So we rationed the battery to find our way to pick up Rowan and then to navigate to the place we were staying, 22 miles way.  We watched the battery life dwindle as we traveled the dark rural roads.  Near the end of the journey found ourselves on an unlit dirt road lined with 6-foot-high corn on both sides, and our headlights illuminated a fork in the road that wasn’t on the map. And then the phone died completely.  If the horror movies are to be believed, we just knew we were all about to be devoured by zombies.  I must add that despite the drama of it all and the danger involved (we were lost, without communication, in a deserted area with a sick, medically complex child), Greg and I laughed at the sheer absurdity of the situation, and the fact that we tend to have more than our fair share of wild surprises like this.  Ultimately, we saw a light off to the right, so we decided to try that fork. This is another glimmer of divine providence, because the light turned out to be that of the relatives house where we were staying.

June got over the stomach bug fine with Gatorade and some phone consults with our doctors, and we went on to have a ton of fun on the trip.  The boys actually developed the stomach bug as well just in time for our drive home.  But we took advantage of the leisurely pace we had planned for the drive back, and since the kids mostly preferred to rest or play quietly while they were recovering, the drive home was actually pretty relaxing.  We even enjoyed a stop at Dinosaur World without any gastric emergencies.

Dinosaur World in Kentucky is awesome.

Dinosaur World in Kentucky is awesome.

I hope that these stories of our shenanigans may offer some knowledge, wisdom and humor to other special needs families.  I hope they don’t dissuade any special needs families from travelling if they’re considering doing so.  Because despite these bumps, these trips have all been worth it.  The memories we made far outweigh the various difficulties we encountered.  These things have been good learning opportunities, too, and have helped us to prepare better next time.  Which means that every time we venture out, we are increasing our ability, wisdom and mobility as a family.  And collecting some good and unusual stories along the way.

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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 careful planning and creative ‘rigging’ to minimize our risk, overcome obstacles to travelling and increase our mobility.  We’ve been fortunate to enjoy several memorable trips in the last few years which were overall very successful.  But they weren’t without bumps big and small along the way.

Special needs family outings What Didnt work

Forgetting Things
We tuck away duplicates of everything possible in case we ever forget something, but there are some essential items that have no such back-up.  Most notably, the portable suction machine which we keep in a bag along with everything needed for an emergency.  Having this “emergency bag” with June at all times is a matter of life or death. As such, I have forgotten to put it in the car about three times ever, and in each case I noticed its absence within 2 minutes and turned around to retrieve it without incident.  Actually for the first two years of June’s life I *never* forgot it because we suctioned her at least once an hour.  But as she grew, and especially after her LTR surgery last summer, June can clear mucus from her trach tube very effectively and does not need to be machine suctioned very often; sometimes only once in 24 hours.  So the first time I forgot it, it was because I capitalized on the momentum of the particularly rambunctious kids who were already in the garage for an impromptu drive around the block.  The break in routine, leaving from the garage rather than the house, contributed to forgetting to grab the bag. On the other two occasions, I had another person with me and we each assumed the other had grabbed the bag.  Now we verbally confirm that assumption before leaving.  In a less dramatic event, when June had first switched from total oral feeding to total tube feeding after her surgery last summer, we once forgot her feeding pump and prescription formula at home when we went on a day trip.  I had the back-up g-tube extension, but we had no way to acquire the rare formula she needed.  So we gave her water and Pedialyte manually that day and cut the trip short by just a little.

Lack of Handicap Access

Our current set-up, the Graco Ready2Grow loaded with emergency bag, oxygen tank (when needed), diaper bag and a couple a' kids

Our current set-up, the Graco Ready2Grow loaded with emergency bag, oxygen tank (when needed), diaper bag and a couple a’ kids

We’ve struggled at times with lack of ramps or space for the stroller that carries June’s medical equipment. A local museum has a strict no-stroller policy at one of their wildlife exhibits, but we explained that (at the time, before June could walk, and I couldn’t carry both her, the suction bag and the emergency bag) the stroller is medically necessary to carry the heavy equipment in the same way that a wheelchair is necessary for some guests, and I asked if the exhibit is handicap accessible in that regard.  That helped to clarify our need and we gained entry, but still while we toured the exhibit, other well-meaning staff approached us to explain that our stroller was contraband.

In another instance when we all went to support Greg at a mud/adventure race, we were assured access to handicap parking at the event itself, but the day of, due to muddy conditions, all vehicles were required to park in a field 18 MILES AWAY and return via shuttle busses.  So, we parked in the field, loaded the emergency bag AND oxygen tank into the double stroller since we would not have access to our car, pushed the stroller across uneven rocky ground and loaded it into the back of a yellow school bus that served as a shuttle.  Then at the event they weren’t kidding about the mud.  The heavy laden, low-riding (non-jogging) double stroller sunk into the stuff.  At times, my feet had no traction to even attempt to push it, and when I did push, the front end was just accumulating a wall of mud in front of it as it burrowed further into its own little mud quarry.  Several times, friendly race finishers, caked with mud and full of endorphines and adrenaline, happily picked up the entire stroller as I traversed the roughest patches of the spectator areas. To top it off, Greg had no cell phone on the muddy, wet race course and couldn’t communicate to me that his team was taking four hours longer than expected to finish.  By the end of it, we were all thoroughly baked in the sun, I had wearily checked with all the medical tents and authorities for news of Greg’s whereabouts, and it was only by a small miracle that we eventually did spot each other in the sea of 10,000 muddy people.

The mud. I would have enjoyed the mud fun a lot more if it wasn't taking place on farm land that was littered with cow patties....

The mud. All that mud.

Environmental Hazards: Smoke, Heat and Weather

The most common environmental hazards we deal with are proximity to smoke and lack of air conditioning.  Usually we can counter these by leaving the smoky area or hopping into the car for some AC, but that’s not always possible (such as when your car is parked 18 miles away. Ahem.). When visiting relatives once, we made plans to stay at a home that I had completely forgotten was infused with 50 years of cigarette smoke AND had no air conditioning.  We had to change accommodation as tactfully as possible.  In another instance, Greg and I used the Hotwire website to secure discounted lodging only to find that the hotel it booked for us only had smoking rooms available (even given the medical basis for our need).  They explained that they could not offer a refund since we dealt with Hotwire, and likewise, Hotwire has a rather iron-clad no-refund policy with ample warning-jargon in the usage agreement that room preferences and amenities may not be available. (This warning never bothered me because we aren’t picky about amenities, but the possibility of being left with only smoking rooms never occurred to me.)  We accepted the fact that we’d probably would not get a refund, and looked around for other lodging that night anyway, without success.  Ultimately we returned to the Hotwire find and reluctantly settled into the smoky room for a few hours of sleep.

In terms of weather, we always have to be mindful of potential power outages that would limit our use of June’s medical equipment as well as any conditions (road closures, disasters) that would affect our access to medical care if needed.  Thankfully we haven’t had any problems, but we have altered our course when bad weather arose- including a few minutes after we took this photo while stretching our legs at a park on the Mississippi River.  A severe storm was blowing in quickly from just across the river, and a minute after we snapped that photo, everyone in the area was scattering, running for cars and shelter as the surprising 60 mph winds arrived just ahead of the rain.  Somewhere at that park is a favorite sparkly shoe of June’s that we lost when we picked her up to run to the car. (Thankfully, our fashionista has plenty more.)

ms-river

Check back later this week for part two!

 

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 ideas and plans that DID work for us recently or in the past.

Special needs family outings What Worked

Packing: Lists, Redundancy, and “The Question”

Kid Suitcase

The biggest concern that I have about travelling anywhere is not having a critical item during an emergency.  We combat this a few ways. First, by using a packing list and packing map that shows where everything is stored (see our free printable here).  Secondly, in addition to the fully stocked emergency bag that we take everywhere, we store duplicates of essential items in convenient places.  This includes:

*Trachs and ambu bags in June’s room, the stroller, upstairs, one under the driver’s seat of the car and one in the back of the car with the oxygen tank

*Suction catheters in the glove boxes of both cars which could be used as manual suction if the suction machine wasn’t available

*Sterile g-tube kit in June’s room and in the car

*HMEs in the suction bag and in the car console

*Extra G-tube extension and 60CC syringe in the suction bag

*When travelling out of state, I bring either our spare suction machine or a spare suction canister and tubing

And finally, Greg and I ask a quick question- The Question- anytime we venture out– “What is the most important thing we could forget?” This serves to remind us that the vast majority of forgotten items are easily replaceable on the trip, so we don’t even inquire about toiletries or small clothing items we may have missed.  This allows us to mentally check off only the “most important” things are those that can’t easily be acquired, like glasses, wallet, ID, cell phone chargers, prescription meds, and June’s specialized medical supplies.

Planning: Extra Time, Flexible Schedule, Exercise, and Breaks Alone

Dino World

We have been fortunate to take the kids on two cross-country trips in the past 2 years. They both went wonderfully, although with humorous bumps along the way which I’ll talk about in the next post- what didn’t work.  The key to enjoying long trips away from home, for us, has been building flexibility into our schedule and accommodations, including:

*Not scheduling a specific arrival time when driving so that we could stop every 2-3 hours during the day to play at local parks without feeling like we’re on the clock (Oh how Google maps has changed this aspect of vacation as compared to my childhood; at any moment we chose, we could navigate to the nearest park, some of which were tiny neighborhood playgrounds that we never guessed were there.)

*Extending our first trip by one week because it was going so well; there was a $100 fee to change the flight date, but we viewed it as an incredible bargain for a whole extra week of vacation.

*Extending the drive time home on our recent trip by one day (and an extra hotel stay), knowing that there were several sights we wanted to see along the way (like Dino World, which was awesome!) and that we would be tired from the exertions during the vacation

 

*Ensuring that, even when seeing family, we always had a private space of our own available to us to tend to the kids’ needs for naps, food, and recharging our introvert batteries.

Help: Seeking and Accepting

Beach

Rowan has a day at the beach with his grandparents

We are blessed with wonderful friends and family.  So when planning to travel, we think of ways that others could help, whether it is the family and friends we are visiting or even the hotels we use.  First, we are able to lighten our packing load by borrowing bulky items like a room humidifier, pack and play or cold weather extra clothes.  Secondly, when hazards to June are involved in the group plans, such as a trip to the pool or beach, we utilize the extra hands available to let the boys enjoy the sand and water while June plays elsewhere.  And lastly, we are grateful for extra hands when emergencies arise.  During our last trip, June unexpectedly got sick and had to go to the ER (more on that in the next post, too).  My sister, who we were visiting, gladly took Rowan for the entire day while we navigated an unfamiliar hospital system.

Electronics: Save for Last

Ghosts in the Car

The kids spent an appreciable amount of time cracking up about pretending to be ghosts early in the road trip.

This one may be relatively unique to our family, as I know many people have great success with electronics in the car; but I find that if I give the kids a phone or tablet early in the trip, they get frustrated when they can’t find or do EXACTLY what they want on it, and soon the phone is getting beaten on and thrown.  (Anyone else experience projectile iPhones while driving?)  And of course there’s the battery life issue.  In contrast, I find that the kids get a whole lot more mileage (literally) out of creative play like coloring, stickers, light bright/etch-a-sketch, and imaginary games; I think these activities are flexible enough to engage the kids pent up energy. As noted above, the kids spent about 20 minutes gleefully pretending to be ghosts.  Another time, Rowan was thoroughly amused to find that June was taking the pretend play so seriously that if he pretended to spill imaginary milk on her, she would cry urgently for a change of clothes. Reason wasn’t really helping, so Greg and I intervened by arming June with an imaginary jelly bean launcher. We all had silly fun dodging imaginary candy.  And I much prefer that to dodging non-imaginary cell phones. We find that- at least for our Safari family and the ages/stage the kids are in now- these imaginary pursuits can fill nearly an entire day of driving, and when the kids do *tire* of them, we introduce the electronics for more passive entertainment; the kids even nodded off watching their phones when they received them towards the end of our daily driving.

Those are some of the things that went *right* or have worked well for our family in our current situation.  There were plenty of hiccups thrown in as well though, some of which are pretty funny in hindsight. We’ll share those in the last post of the series: what didn’t work so well!

Special Needs Family Outings: Decision Making

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 can misunderstand the family’s decision making.  Unfortunately being misunderstood or misjudged for such decisions is a frequently lamented occurrence in the special needs community.  It is a significant factor in the reduction or loss of relationships that new special needs families often experience.

Since every family’s needs are different, I cannot compile an exhaustive list- or even a most-common list- of extra considerations that a special needs family may have.  Instead, I’d like to offer two examples of decision making which illustrate how misunderstandings can occur.  I hope this may be a helpful conversation starter between special needs families and those close them.

The two scenarios below are entirely fictional, but I will suppose the family involved is my own- that is, the Safari household with three children under 5, one of whom has a trach and a g-tube- since I know what all of our “extra considerations” are.

Scenario 1:

The Safari family is invited to the mall for a playdate on a weekday morning in March by a friend who has 2 preschool-aged children.  The Safari family accepts.

Scenario 1 decision making:

Deciding on whether to go on an outing is about benefit and risk assessment. It’s not black and white- it’s a judgement call in which the family does their best to judge the risk and decide whether to incur it.  Some of the many factors which may be involved in a decision include:

Season– This includes considerations like weather and seasonal bugs. March usually falls right after the end of RSV season in our area, although the season is sometimes extended.  During RSV season, especially when June was younger, we avoid unnecessary exposure to the public and especially avoid exposure to young children.  (Read more in our Intro to RSV, here.)  In this scenario let’s assume RSV season has ended for our area (meaning the number of RSV cases reported weekly in our region of the state has dipped below the agreed upon threshold) and there is no inclement weather, so the ‘season’ consideration leans in favor of the outing in this scenario.

Timing- This refers to how the time of day (morning), week (weekday) and year (non-holiday) affect the outing. For any family, it is easier to keep track of children and manage behavior in quieter, less busy areas than it is to do so in louder, crowded areas.  So, while the mall isn’t the quietest, calmest place possible, going on a weekday when kids are in school and many adults are at work is pretty workable.  The ‘timing’ consideration gets a check in favor.

Environment- Assessing the environment for risk involves a myriad of things including the flow of vehicle and foot traffic, handicap parking availability, stroller accessibility, ease of accessing our vehicle in an emergency, level of childproofing (fragile, sharp, heavy, hot things in reach), physical limits of the area (enclosed play place vs wide open), visibility of the kids in the area, sanitation practices, ability to comfortably use the loud suction machine, environmental hazards to June like smoke, dust, glitter, incense, perfume, strong smells, and splashing/standing/spraying water, AND the amount of effort it require of us to deal with the hazards present.  In this scenario let’s assume the parking at the mall is adequate, though I would be moderately far from the car in an emergency, the play place is enclosed but with good inside visibility (no tunnels, houses, walls), adequate sanitation schedule/supplies, a stroller can enter, there are no water features and it is non-smoking- all of which amounts to only mild risk.

General exposure to germs- This involves some guess work, but we think about what level of germ exposure we expect for the location itself, which is influenced by the population (mostly adults or lots of kids), the turnover rate (an all-day event with one group versus being in a play place with kids coming and going continually), amount of contact the kids and others have with surfaces (sitting at a table versus climbing around a play place), the sanitation practices in place if any (a mall play place versus an outdoor park playground), and the health of the population present (an outdoor park versus a play area at a doctor’s office).  In this scenario, the exposure to germs gets a high risk rating, although the reduced traffic on a weekday helps some.

Close exposure to germs- This involves thinking about the people our kids will definitely have direct contact with on the outing, in this case, our friend and her two preschool-aged children.  Our friends are aware of the risk to June, so they always tell us if their family has been exposed to illness recently so we can assess whether to reschedule.  In this scenario let’s assume the mom says one of her kids had a runny nose the week before but no fever, and seems fine now; that would be mild to moderate risk because if the child was sick, germs might stick around for a while. But being around children who have mostly recovered from mild respiratory illness is a risk we typically take when it’s NOT RSV season for three reasons: first, because June would be exposed to these germs in the public anyway, secondly, so she can build up immunity to compensate for being sheltered from germs during the winter and thirdly because her pulmonary health is strong, and having a common respiratory infection is not likely to be devastating.

So, Scenario 1 involves favorable season and timing, pretty good environmental set-up, a moderate close exposure risk and a high general risk of germ exposure which we will deal with by extra sanitizing during and after the event.  We decide to go for it.

Scenario 2: 

The Safari family is invited to the mall for a playdate on a weekday morning in March by a friend who has 2 preschool-aged children.  The Safari family declines.

Decision making:

Comparing the basic facts, this looks like the same scenario.  But when looked at through the lens of benefit and risk assessment, they are very different.

Season- Let’s assume the season and weather in the two scenarios are the same, so this consideration is a positive for this outing.

Timing- Although it is on a weekday, this outing falls on Spring Break, during which time children, teens and adults alike descend upon the mall in a celebratory mindset, making it very noisy and busy.  This area of consideration is a net negative for this outing.

Environment- This is a different mall than in the first scenario, and let’s say here, the only handicap parking is outside of a wing that has active construction going on.  The hanging plastic sheets don’t quite contain the sheet rock dust and who-knows-what-else (this is an asbestos abatement project, you say?), so we would have to park elsewhere to avoid it in the back of a chaotic lot full of vehicles that were similarly displaced.  The barriers for construction have narrowed some walkways in unexpected areas, making it difficult to push the stroller carrying June’s medical gear.  The play place has a tree house for climbing, and children cannot be seen when they are inside of it; this is problematic for June because I need to assess her visually at least every 60 seconds to be sure that her breathing isn’t obstructed. Also there is no wall around the play area, meaning while a mom is dislodging one child from a plastic tree branch, another one may be running to a far off Ninja Turtles display inside Macys’.  This area goes in the negative column.

General exposure to germs- Exposure to germs is higher for several reasons including additional children present from spring break, the enclosed nature of the tree house, and poor sanitation practices since I’ve never seen a mall employee climb the tree to wipe down the inside and there are no hand sanitizer or sanitizing wipes posted for the public.  Eek, negative column.

Close exposure to germs- Let’s assume the mom and children we are meeting are healthy, yay!  That’s a positive.

Scenario 2, while it appears identical to Scenario 1 at first, involves positive things in regard to season and close contact with germs, but significant negatives in terms of timing, environment and general exposure to germs. Ultimately we decide not to incur the risk. 

It’s easy to see how misunderstandings can arise when these two scenarios look identical at first glace, but the family accepts one invitation and declines another.   It’s most important to note that the decision to decline was based on a judgment of the situation as a whole, rather than on any absolutes.  Most misunderstandings arise when others seek to infer black-and-white rules, like the Safari family can go to the mall,” “can’t go to the mall,”  “can’t go to Northline Mall,” “can’t go anywhere that’s under construction,” or “can’t leave the house during Spring Break.” Given the right circumstances, our family could do any of those things.

In an upcoming post, I’ll take a closer look at common misunderstandings like this that occur in this area, the their results.  The key to avoiding all of them, though, is communication and grace.  I hope this small peek into the special needs decision making process raises awareness and sparks discussion among those making, and those impacted by, these decisions.

Special Needs Family Outings: Boldly go. Or not.

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 to enjoy several amazing trips this summer including day trips within the state as well as a cross-country road trip.  But in years past, we have also declined many invites and opportunities because we felt it was the best choice for our family at that time.

I want to share a little of our experiences both of declining and embarking on adventures because I know the enormous pressure special needs families face when making these decisions.  It can seem that there is no “right answer” when the family (and outsiders) wonder if “going” is reckless, “staying” may be overly cautious, and “going with abbreviated plans” leaves many people disappointed. Those outside of the special needs world usually don’t understand what goes into the special needs family’s decision making process, which can lead to misunderstandings or hurt feelings from those impacted by the family’s choice to stay or go.  And even from within the special needs community, pressure can mount when special needs families begin to compare or judge each other’s choices about venturing out of the house, state, or country.

I have three objectives for this blog series:

  1. To say to special needs families: Boldly go. Or boldly stay. Both options require courage, and you alone are equipped and empowered to make the choice.  The decision is so unique to your family and circumstance that it really can’t be compared to other’s choices or even evaluated from the outside.
  2. To share some of what goes into the travel decisions, for special needs families who may want to share this information with others to help ease those misunderstandings
  3. To share some of our own experiences of traveling and of staying- what worked and what didn’t, the comical moments and the hand wringing ones, and how our decision making is changing over time as we gain experience and as our children get older.

Also, those families who are preparing to “go” sometime soon might be interested in our previous posts on the topic of Travelling with the Medically Complex Kiddo, including a free packing list printable!  

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.  This will not be a surprise to other special needs parents who have nursing.  But I know others outside of this medically complex family lifestyle often struggle to understand why nursing (or many other well-intended helps and fixes) can be more of a burden than a help.  Let me explain.

Nursing Update: On the Myth of Helplessness

First, how could professional nursing help, paid for by insurance, possibly be anything but a welcome blessing to a family with one child with complex medical needs and a total of three children under 5?  I addressed many such reasons in a previous post about why we oh-so-happily declined nursing two years ago.  A few examples of how these reasons manifested in real life in the past month:

  • These 8 nursing shifts have been staffed by FOUR different nurses, and we are soon to receive a FIFTH.  So during these “respite shifts,” I’ve met, screened and continuously trained four different people. Enforced boundaries big and small with all of them. Navigated four new personalities while assimilating them into our daily routine.  Not to mention the first nurse we had, I trained for a few hours, and she enthusiastically discussed her upcoming schedule for the week (along the way, breaking a few HIPPA rules and her own company policies I noted), then she left to pick up some missing paperwork for our case at the nursing office and never returned.  She never called.  Didn’t show up for her next shift. And the nursing agency informed me that she was completely new to them when she took our case, and after disappearing from our house she wasn’t returning any of their calls either. This strange incident left us scrambling to figure out if she had access to any of June’s, or our, financial or identifying information while she was at the house, because children with disabilities are vulnerable targets for identify theft and fraud.
  • The only reason nursing would be helpful to me is to have help directly observing June 24/7 to watch for trach plug emergencies.  As I mentioned in the previous post, handing *June’s* emergency trach changes is a task that many trach-trained nurses would not even be up to.  The only emergency trach change that occurred while a nurse was here, I handled myself, because the veteran nurse with decades of trach experience had just finished telling me, “It’s been 20 years since I’ve had an ambulatory patient [one who can walk/has strength and motor control],” and she wasn’t sure if she could handle the quick-thinking wrestling match that an emergency trach change with June requires.  Indeed, she was pretty wide-eyed after the trach change, and regarding her ability to handle a similar one herself next time, she offered sheepishly, “I can try.”
  • Despite reassurances from the nursing company to the contrary, our nurses are not able to end a shift away from our home.  Meaning, we have to be home at 5pm. So, when I needed to meet Greg at work with the kids in order for me to leave for a much-needed mom’s night out?  I had to send the nurse home early.  When we scored a last-minute doctor’s appointment but the only slot available was 4pm?  We had to change the appointment.  When an early afternoon appointment unexpectedly went long?  I did not have the freedom to stop for dinner, or an impromptu play date, or a museum tour while rush hour died down.  Instead, I had to plod through the thick of traffic for two and a half hours, three screaming kids in tow, with a nurse anxiously texting her husband about our ETA at home (and her shift end) which ended up being an hour and forty minutes past her planned end-of-shift.  And because of our limited nursing hours, not only did the nurse end up missing her chance to see her young child before she went to bed that night, the company may not be able to compensate her for the over time. Obviously, that was a terrible afternoon for all of us, and how I wished I had been able to take the kids to see the new amber exhibit at the “dinosaur museum” instead, like we normally would have done.
  • BUT WORST OF ALL. As an introvert, interacting with people other than my little family drains my battery and I need to recharge it in solitude, or near solitude, like driving without other adults in the car, or like supervising the kids while they’re engaged in something else such as the museum trip, both of which were *prevented* by having nursing.  At the end of last week, when I happened to have people in the house every day with no way to recharge, my battery drained to absolute zero.  At zero internal resources, I couldn’t bring myself to engage at all socially. I stared straight ahead and avoided eye contact and talking. Since the nurse was engaged with June, I turned a self-protective shoulder to June, too, which I hated doing.  Ultimately I decided to send the outsiders home and to recooperate by treating to kids to chick-fil-a- hoping to get a little near-solitude while watching them stay occupied in the playplace.  But the momentum of the stress and depletion continued, and I ended up wracked with stomach cramps.  I had to call Greg to leave work early and meet me and the kids.
  • Stewing along with all of this are several upcoming decisions about June’s therapy schedule and schooling decisions, with differing opinions being thrown in the ring by myself, ECI, the school district, the doctors, the caseworkers, the therapists and even other special needs moms.

I share this in order to explain a larger truth:

The “help” that is available to special needs families is often very different in practice than what it is imagined to be by those suggesting it.  And for that reason, special needs families must be able to CHOOSE what help is appropriate for them. 

Respite would be helpful if it worked as it ideally should, but in REALITY, I have spent far FAR too many hours in the last year stressed and dealing with problems caused by this nursing process.  Hours and energy that I don’t have available to waste.

The reason why this nursing problem exists at all is that someone who is not in our situation decided nursing should be forced upon us, “for our own good.” (Our Medicaid requires it; also see here why our situation and insurance necessitates the use of Medicaid.)  While I heartily support resources being made *available* to special needs families to utilize as their unique situation calls for, forcing families across the board to accept unwanted advances of charity is by no means helpful, or even respectful. We have similar battles every time a course of treatment or therapy is suggested that we know from experience detracts more from June’s well-being more than it helps (if it helps at all). We are purposeful about educating the professionals involved about our actual experience of such helps, and why we feel various options are not a good fit.  But even if ONE battle is laboriously won with ONE professional, more suggestions and demands meant to help continue to be thrust at us at every turn in this journey.

Why is this? What about having a special needs child could possibly imply that we no longer have the capacity to manage our own lives, schedules and homes?  Why should we suddenly be subject to any and every idea of “helping” that others conjure up based on their limited observation of our life, AND their limited knowledge of what that “help” actually consists of practically? Indeed what about this situation makes it acceptable for “help” to be inserted into our very living room by the government?

It is actually related to an innocent-sounding myth that often appears when people see a special needs family like ours:

“They need all the help they can get.”

It comes from the right place, on the surface.  But lurking just below is condescension and a denial of common dignity.  Allow me to dispel this myth.

First, this myth paints special needs families as pitiful and helpless, in a constant state of need.  Actually, we are quite capable of seeking help if we need it.

Secondly, this myth that “we need all the help we can get” carries with it the implication that it is acceptable, even encouraged, to attempt to ‘rescue’ us without invitation or permission.  Meaning that anyone can freely assert their opinion, will or resources on us, our home, or our time as long as their heart is in the right place.

Being the recipient of misguided and unwelcome generosity doesn’t sound that bad?  Where shall I send your gift basket of puppies?

To refute these assumptions of helplessness and denial of self-agency, I must say:

We, as a special needs family, are resourceful and intelligent.

And as the sole experts on our situation, WE should decide what our family needs and doesn’t need.  

 

And what does my family need right now?  RESPITE FROM OUR FORCED “RESPITE.”

To spend my time snuggling with my kids instead of corralling the dog while texting with nurses about why they are late this time.

Snuggle

To be able to pull the car over to nurse my wailing infant, play at the park, or stop somewhere for a snack without the danger of holding an employee hostage in the process.

Park

To go to the dinosaur museum- or arboretum- or zoo- or fair- after doctor’s appointments. Or anytime, really.

IMG_20160304_131524

June checking out a giant beating heart at the Health Museum

Library

I love parachute activities just as much as the kids

To be able to wear pajamas past 7am.

Celebratory confetti for pajamas!

Celebratory confetti for pajamas!

To meet my husband for dinner on a whim.

High five to that!

High five to that!

To watch my kids, clean, and cook without a stranger sitting at the kitchen table.

Baking IMG_20160413_163600

To be able to devote time to my small business anytime I decide to, rather than being technically forbidden to “work” while a nurse is providing respite hours.

The firestation (which we toured recently) is one place I'm excited to offer an ASL seminar, so emergency workers have some basic signs and knowledge of special needs patients.

The fire station, which we toured recently, is one place I’m excited to offer an ASL seminar, so emergency workers have some basic signs and knowledge of special needs patients.

What do I want? Simply put: TO BE LEFT ALONE by those who want (and succeed sometimes) to force their will on our complicated life. To be treated with dignity that DOES assume that we are capable of assessing and meeting our family needs by seeking OR declining the range of tools available to us.  And for people to understand that having a family that is different than ‘the norm’ isn’t “a bad thing to be fixed” or compensated for or pitied.  For people to stretch their imagination enough to believe us when we say: Far from being pitiful and in need, we like our life.  No, it’s not your normal. But it’s our normal. And it’s a unique adventure.

A family meet-up at the park so we could 1- Discover new parts of the city 2- have dinner out 3- Greg could take the big kids while I took Miles to a much-needed mom's book club evening

Exploring a cool downtown park this week where we waited to meet up with Dada, who was attending an afternoon sporting event nearby. Then we had dinner and Dada took the kids so MAMA could attend an evening mom’s book club on a far side of town. I say that’s a win all around, but it would have been impossible if we were tethered to the house by a nursing schedule.

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 household, and later I juggled a non-dairy non-soy diet for myself and June while the boys continued to eat like humans.  I made my own granola cereal, chocolate and ice cream.  We even went through a period when June couldn’t eat, which sounds like it would make things a bit easier, but try maintaining a functional kitchen- and using it- when you have an active toddler around who can’t be allowed to access food.  I handled all of that fine, and enjoyed the challenge.  And I don’t know what changed, but recently

*I’ve become completely and utterly inept at meal planning*

Meal Planning

I never knew the were so many ways to mess up at it.  I’m still discovering new ones….

In addition to not starting slow-cooking meals on time, making too little or too much food, forgetting to refrigerate left overs, letting left overs spoil, forgetting key ingredients while shopping, forgetting key ingredients while cooking, letting key ingredients expire, using all of a key ingredient in one recipe when it’s meant for two, letting meat and produce spoil before their meal night is scheduled, and ALWAYS forgetting to prepare the sides, I also frequently….

….grocery shop too late or too early to order from the meat counter.

….find weird cuts of meat on sale that don’t quite perform right in recipes

….don’t notice when a recipe sneaks a whole other recipe into the *instructions* area (now serve with Spicy Mango Salsa!!)

….am disappointed when I attempt that trendy “freezer meal” thing (so, it still takes a ton of time to prep and THEN cook from frozen, and by nature it’s a large volume of one flavor/consistency you are stuck with as meals and left overs.  Am I the only one not seeing this as a “magical economical cooking hack”)

….somehow can never keep paired food in the house at the same time for the no-bake options….eggs and bacon, peanut butter and jelly, bread and lunch meat, cheese and crackers….

….buy too little milk for several weeks, and in subsequent weeks I double stock our milk twice or three times, creating mandatory milk binges in the house.

….stock up on frozen meals as a fool-proof way to have food available, but day after day I realize I’ve missed the 1-billion hour advance window that I need to put it in the oven for it to be ready by our early dinner time

….have no idea what canned goods we have because the kids have started using them in their pretend games.  I end up saying things like, “Rowan, go check your train and see if there are any diced tomatoes in there.” (The answer was no, and I substituted spaghetti sauce, which really is a whole other way to ruin a meal.)

I don’t know if it’s having a third kid, mom/nursing brain, or maybe I just decided I need a break from meeting the challenges of meal planning after fielding all of our crazy dietary needs for the last few  years. That, and it’s now nearly impossible to do a full grocery shopping trip with the three kids plus June’s emergency bag; the best I can do is bring my double stroller, hang a several reusable bags from the handle bar on some mom clips and shop until those are full. Whatever the reasons contributing, we seem to be single-handedly supporting the fast food industry near us.

Suggestions from veteran moms??  How do you handle the ever-changing stock of household food, dozens of expiration dates and time frames, perishablity of healthy fresh foods, starting prep at the right time in the day while juggling 100 other things, and the challenge of fitting time to sit down to meal plan, then shop, then, yes, actually cook then clear/refrigerate into your week?

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 reasons why we prefer not to.  There is a second reason, though, which can be illustrated with the following analogy for home nursing.

Home Nursing Analogy

Imagine that you were told that your young child would be involved in two car accidents every week for the foreseeable future.  The exact time of the accidents would be random and unforeseeable, and they would vary in severity.  However, the accidents would always occur in your own vehicle and on roads you are intimately familiar with.  

Now imagine that you are told you have the option to let strangers drive your child around in your car, a little or a lot– all the time if you’d like!  But they would handle those inevitable car accidents, in your car and on your roads, and tend to your child afterward for better or worse.  But don’t worry!  These strangers are licensed drivers of course!  Now, as far as how long they’ve been driving, whether they’ve driven a car anything like yours, or EVER been in an accident, who knows- that varies.  And they are completely unfamiliar with your roads and the traffic patterns of course.  What do you say? Would you like us to send someone to take a shift?

This is what utilizing home nursing is like for us. To explain in more detail…  For a while during the winter, June was having two emergency trach plugs per week (“car accidents”), some minor, like partial plugs, and some major (“varying in severity”) like full plugs or incidents when we couldn’t physically get a new trach in, during which June would nearly lose consciousness.  These events were always unexpected, they occurred at night, during the day, in the kitchen, in the car, in the backyard… But, just like “knowing your own car,” Greg and I always instantly know how June is doing by the particular sounds of her breathing, her behavior, the condition of her stoma and lungs, and it allows us to anticipate these otherwise completely unexpected emergencies (or “car accidents”) somewhat.  Just like “knowing your own neighborhood streets and traffic patterns,” we know by heart where all of her emergency equipment is located in the emergency bag and in the house, so no precious time is wasted fumbling for those things, and we know what environmental and circumstantial hazards June is likely to encounter that would make an emergency more likely.  And most importantly, we are her parents, and our presence is an irreplaceable comfort to June when these emergencies occur.

A nurse has none of these advantages when handling an emergency (or “car accident”).  A nurse is licensed by the state, but that is very similar to the general nature of being a “licensed driver” in this scenario.  She may never have handled a trach patient (“a car like yours”) or may have had only trach patients with very different circumstances, such as a patient who is immobile on a heated circuit vent and never has trach plugs.  As such, she may have never handled an emergency trach plug or emergency trach change (“car accident”) and therefore, even she doesn’t know how she will react.  (No kidding here– other parents of kids with a trach have shared that their nurse became hysterical, left the child and ran out of their home screaming and waving her hands, when the child had a plug and a difficult trach change.  Thankfully the parents were there, too, and they finished the trach change calmly in the nurse’s absence.  In fact, when looking for a nurse this time, I strongly emphasized the need to perform well during an emergency, because June has them frequently, and thankfully several nurses have honestly said, ‘In that case, this isn’t a fit for me.  I get jittery when a child is in danger.’)

SO!

You may say, “Wait, I thought this was a post about why you ARE seeking some nursing, not topping off the pile of reasons not to.” Well, hear me out.

My husband and I have been caring for June ourselves just fine for the last 2.5 y ears, “taking shifts driving,” so to speak.  The only times we have not personally observed and cared for her are for 2 hours while Greg was at my bedside when we had our 3rd child last year (and June was with her medically-trained grandmas in the hospital waiting room, ready to text Greg if he was needed), and for 45 minutes here and there during inpatient stays when we left a dedicated attendant at the bedside with June so one of us could go buy food or rest.  It has worked fine for us- it’s our normal, and we actually have a fun, silly and adventurous family life.  But I realize: we’ve been lucky. There has never been a time when we were both unavoidably unavailable. Greg has always been able to take off of work when I’ve been sick or in the hospital.  But eventually, there will be a time that, for some reason, neither Greg or I can provide the 24/7 monitoring she requires. And it’s also true that it is *healthy* for us to take a break “from driving” occasionally.  So, when that time comes, I’d rather have someone available that at least knows “our car” and “our roads” a little bit than not at all.  I’m reluctantly seeking some nursing, first, because it’s required, but secondly, because it will benefit June by establishing another care giver to ensure she has proper and safe care if we ever absolutely need it or in order to provide us some respite so Greg and I will have the endurance to provide her excellent care long-term.  

Still, ug.

Let the nursing adventure begin?

Declining Home Nursing

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 amount of home nursing again.  And I’m already exhausted by the problems that have arisen as a result, even before any nurse has stepped foot again in our home.  So, for parents of special needs children wrestling with the problems of having  home nursing versus the problems associated with not having it, here are the reasons that we declined it. In an upcoming post I’ll share why we are seeking some limited nursing after 2 years of enjoying not having it.  These reasons are personal, and they won’t represent everyone’s experience.  They are in no particular order below.  Some of these issues are more important than others, and not all of them are insurmountable in themselves; keep in mind we made our decision based on the entire risk/benefit picture as a whole.Declining Home Nursing

 

Invasion of our space

My husband and I are introverts. Being around people other than our little family- even nice, considerate people- sucks our energy away.  A great picture of introversion is here. I time and manage my social interactions very carefully so that I have time to recover. Having someone present in my home would drain me to the point of desperate need of recharging in isolation, and I don’t have the time or energy for this depletion and recharging cycle.

Affecting the dynamic with the kids

Most people would be surprised to find that Greg and I are very silly with each other and the kids. We make up songs all the time with ridiculous lyrics about what we’re doing or substitute the kids’ names in familiar songs. We wrestle and tickle and pretend to be dinosaurs.  We dance to rap music.  And one of my favorite parts of the day is in the morning when Miles wakes up in his crib, which is in the master bedroom attached to our bed; Rowan and June pile onto the bed next to his crib to say good morning, sing, pat him, and jump and roll and climb over across and under the crib and bed.  We spend a half hour just lounging and playing as I get Miles ready for the day. We don’t do these things if someone else is in the house; their presence changes the dynamic because they are not part of this silliness we share as a family.  It’s worlds colliding; it’s like someone staring at you while you eat.  I think it would steal the magic of the moment to pause and say to a nurse, “Wait in the living room while we do our good morning silliness tradition,” and, alternatively, we certainly won’t invite the nurse onto the bed for a pillow fight.

Affecting behavior with the kids

Every parent of a toddler knows that they behave very differently with an audience.  Having someone present in the house affects all of the children’s behavior as they dutifully test whether the typical rules still apply, and whether they can get a reaction out of the guest or a novel reaction from the parent.

Logistical problems

When we had nursing overnight, we had to put our two large dogs in the bedroom with us so that they wouldn’t bark or bother the nurse, and if they did bark, it wouldn’t wake any of the kids.  Having 150 pounds of snoring dog in our bedroom to trip over in the dark did NOT provide me with the restful sleep that night nursing was supposed to offer. Other logistical problems- where to park, where to take breaks, where to store “lunch” and how to prepare it quietly at night, the necessity of a landline to “clock in/out,” and storage of the nursing company supplies in June’s crowded room.  Also, the necessity of being at home when the nursing shift starts and ends is a huge logistical problem as well as a killjoy; since it takes 2 hours in traffic to get to our appointments at the children’s hospital, that means we would  need a four hour buffer around both the shift start and end times during which we couldn’t schedule appointments.  We also couldn’t swing by the ‘dinosaur museum’ down the street after an appointment or stop for ice cream/zoo/impromptu play date when the traffic stacks up on the way home, because we would need to shuttle the nurse back to her car at our house in time for her end-of-shift.  (I hear that taking nurses hostage is frowned upon, even if they are provided ice cream.)

Privacy and security issues

I am a very private person, and home nursing posed various challenges in this area.  First, neither Greg or I were comfortable walking around in underwear with someone in the house.  So I had to dodge sleeping-dog land mines and put on pants every time I wanted a drink or snack in the middle of the night.  I didn’t want to pump milk or breastfeed uncovered aside from around my little family, which amounts to a huge inconvenience when I was doing one or the other 7 times a day.  (I fully support the right to choose to do so uncovered, but I personally feel most comfortable covered.)  Since we were primarily using night nursing, which meant we were leaving our sleeping children unattended with a stranger, Greg and I installed cameras in June’s room, and neither the nursing company or a few of the nurses were comfortable with that (too bad!! and more on that in the nursing competency section).  I am very protective of my kids’ personal health information, and you would think that with all of the HIPAA trainings that professionals have, that nurses would not take pictures of my their patient with their personal cell phone, but no.  And lastly, having a stranger in our home unattended, Greg and I were conscious of protecting our financial information, money, checks, etc, which was challenging and a hassle to accomplish in our open-concept house.

Scheduling and accountability issues (Basically lots of problems and no follow through….feel free to skip to the next section for something more entertaining)

When we chose our first nursing company, I knew that the ongoing revenue available through home health often prompted fly-by-night, unscrupulous, or unreliable companies to pop up.  So I went through the list of local companies the hospital social worker provided, and I eliminated any companies that did not have a website and/or a working phone number.  THIS ELIMINATED HALF THE LIST.  Of the other half, only one company followed through with my inquiry for information, and they seemed good; they were national, had an impressive intro folder, met with me at the NICU bedside and gave June a promotional teddy bear.  I signed up with them, and then their customer service went to hell.  The person who signed me up passed my case- but none of my input or preferences- on to another person, so my initial nursing schedule was set up completely wrong; I had to send nurses home who had traveled from across town, and they subsequently declined to come back.  Nurse managers and administrators would show up 2 hours late for meetings with me.  The nursing company would NOT correct my schedule despite the fact that I called to correct it every day.  I had no nurses on the few nights I did want one (to get some extra sleep), nurses appeared when I didn’t want them, the company wouldn’t change my schedule to accommodate doctor’s appointments, and nurses sometimes called to cancel an hour before their shift start when they realized I lived on a far edge of town.  Also, this nursing company NOT ONLY doesn’t do face-to-face interviews with the nurses they hire (they just need to pass a few tests at a central testing depot) but they ALSO don’t drug test their employees at any point.  They said in regard to this, “We prefer to weed out problem employees in the real job setting because problems aren’t really evident in an interview anyway.  But if at any time you have any behavior concerns or suspicions of intoxication, you can call us right away and we address it.”  This is not a reassuring set-up for those of us who need *night* nursing when we won’t be observing the nurse.  AND, unbelievably, the company was surprised and uncomfortable when we told them we would be using cameras in the home in light of their screening practices.

Now….you’d think it was just this nursing company or office, right?  In the special needs forums, I see stories just like this for tons of different nursing companies in different areas.  And recently when we initiated the process to start nursing again, I obviously chose a different company.  Two actually.  Number One- which is highly recommended by local moms and nurses- took my information then failed to call me back. After a month I called and had a face-to-face meeting with an “advocate” in their company.  I provided him the documentation he asked for.  For a month, he failed to called me back.  I left another message.  Nothing.  I called another person, told them I was working with the “advocate,” and told the new person my story again.  Both the new person and the advocate failed to call me back.  Finally, I called a different nursing company, who took my message…and failed to call me back.  I called them back and spoke direclty to the “new patient” coordinator.  He failed to call me back.  Then, when we were at the part of the insurance process when we had to choose a company, I reluctantly chose ‘Number One’ since neither had called me back and this one was at least highly recommended.  SO. Insurance faxed paperwork.  No one called me.  I called and spoke to their “new patient” guy, and also told him I was supposed to be working with “the advocate.”  Neither that new patient guy or the advocate called me back.  I called back and found that new patient guy I spoke with had transferred somewhere else two days after we spoke.  I gave the new-“new patient guy” A TALKING TO.  Told him the. whole. story. again.  I told him I wouldn’t do business with his company except for the fact that the other nursing companies had done the same thing to me so I’m circling back through the list.  He said he’s very sorry, and I provided the paperwork he requested. AND THEN. He. didn’t.  call. me. back.

At this point in telling the story I typically get questions of “How can this be???” “Have you just gotten really bad companies??” “Are you being really mean to them on the phone??”  No, I’m not mean to them until they’ve screwed up at least 10 times.  And as I said, problems abound across companies it appears from global forum feedback, though some parents I know have had good experiences. Why are bad experiences so rampant though?  Maybe high turn over.  Maybe poor training.  Maybe because people in need of home nursing are usually guaranteed customers- they need the care whether the companies provide good customer service or not. I don’t know.

Nursing competency

This is the most entertaining, but most highly variable reason listed.  Many nurses, including my best friends actually, are wonderful, amazing, professional people.  I’m sure there are some wonderful people who work in home health. We might have had one or two good ones, but they weren’t around long enough for me to be sure.  I’m hoping that if we stick with nursing this time, IF WE CAN EVER GET IT STARTED, then we will find a good nurse or two who are a fit for us.  But one of the main nurses that worked for us our first time around….

…..constantly mentioned, out of nowhere, that he is a doctor in Belize and insisted on wearing a white lab coat to his shift

….in addition to claiming to be a doctor, he told multiple grandiose stories about his nursing career, accomplishments, and how much money he has, but the stories conflicted with each other and didn’t make sense

….was visibly uncomfortable handling the bags of breastmilk I had pumped and stored, and frequently implied that I bought breastmilk from Craigslist that might have HIV in it

….told me stories about the mother of his other patient, who he referred to as a “hoochie mama.”

….regularly remarked on how nice our home is as compared to homes where he usually worked, which he characterized as “beneath him,” and subsequently asked how many bedrooms we have and about the layout of the parts of the house he didn’t need to access

….he stated that he quit working for one family because they installed cameras, which insulted his professionalism.  I promptly explained that we were in the process of installing cameras.  He wanted to know if they only monitor live or if they record.

…after cameras were installed, at the end of his shift he said that June’s feeding tube had come unhooked and soaked the bed during one feed (this is a common accident called “feeding the bed”, though it’s a mystery as to why he didn’t notice it for the entire 1 hour duration of the feed if he was next to her bed awake), and he bluntly explained that he tried to hide this fact by putting the soiled sheet at the bottom of the laundry. “But,” he said, “I wanted to go ahead and tell you since you’ll see it anyway,” he said, indicating the cameras.

…he stated that the reason he works pediatric night shifts is that he “doesn’t like to work hard.” Or he also said he got wounded in the war.  And that this is the only way he gets to hold babies.  And that he was frustrated that no school in the US would admit him to an MD program and that he had to go to Belize for medical school…but as usual that detail was not relevant to the topic.

And keep in mind, all of this occurred over a three week period of employment during which he worked two nights a week.  So.  It was an eventful three weeks of home nursing. The topic of medical competency and professionalism is huge, and I have plenty more stories, both good and bad, of our inpatient and outpatient experiences from the last 2.5 years, and plenty  more to stay on the topic; this’ll do for our experience with *home* nursing specifically though.

Insurance insanity

I’ll go into more detail in the next post, but the final reason for us declining home nursing is that our private insurance company wouldn’t allow me to cut my weekly nursing hours down so that the limited shifts that my plan offers would stretch until the end of the year.  I either had to use all of my hours up with extensive weekly nursing coverage such that I would run out of shifts in the first 3 months of the year and then be without any possibility of nursing for the rest of the year, or I could forego nursing shifts altogether.  Is it at all surprising that I chose the latter?

 

So, WHY IN THE WORLD WOULD I SEEK TO GET HOME NURSING AGAIN?? you may ask.  I’ll tell you in an upcoming post soon.

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 just one extra ongoing household chore (laundry, dishes, picking up) in the evening before shifting into leisure mode. That way I could pare down our list of one-time “to dos” (end-of-year, beginning-of-year, 100 little tasks displaced by holiday madness etc) during my day.  It was amazing how quickly we tackled that backlog of “to do”s with that little schedule adjustment.

Now, I’m looking ahead and envisioning our new routine. Greg and I often reference the ” big rocks” analogy of time management. If you are unfamiliar with it, one presentation of it is here:

The basic idea is, if you put the important things into your schedule first, you’ll find you can still fit many of the smaller tasks in between them naturally. But if you pile all of the small tasks and time wasters in your schedule first, it will appear as though there is not room for the big important rocks. Greg and I often discuss what we consider to be the “big rock” items in our family schedule, and whether we are treating them as such. This practice has always served us well.

Recently however, even though we use this purposeful approach, and even though we are blessed with regular help from extended family, and even though I am a seasoned and compulsive multi-tasker, and even though I am so stubborn that I often give 120% of effort/energy (more than is healthy) to finish whatever challenge I’ve decided to tackle…I’ve wondered if it’s really possible to fit all of the important rocks right now, as I’d like them to look. So it’s time to revisit my priorities to see if I truly am expecting too much (quite possible) and/or if I can distribute my limited time and energy differently to achieve a better balance.

Based on the prevalence of articles on time management/juggling things/finding balance, I think  I’m far from alone in struggling with the constraints of time and energy.  I was talking with a friend- a fellow stay-at-home/aspiring work-at-home parent of preschool children- who summarized my thoughts perfectly:

“I want to take care of the kids and the house, maintain my own health, and do some kind of career related activity. But I find that I can only ever do one-and-a-half of those things.”

That has been my experience exactly. Taking care of the family and home always seems to comprise most of the “one,” and everything non-mom-related competes for that “half.” And every time I devote energy to getting one life area up to par, I find that another area has deteriorated into an unacceptable state.

If you find yourself in this same spot, unable to fit everything you want into your days, try these steps along with me:

big rocks self-care

  • Identify the “big rocks:” those things that you will fit into your schedule purposefully because they are most important to you. Personally, in addition to caring for all aspects of the kids’ well being, maintaining a safe home, and sharing the journey with my partner in adventure, I (try to) prioritize my nutrition, health, spiritual life, social support, and some pursuits that are lot directly related to motherhood, such as hobbies (blogging!), learning, and a few (very) small business pursuits.  I truly believe that prioritizing most of these things is essential in order to care for my children well, as explained next:
  • If you are a caregiver, remember to prioritize self-care.  The analogy of the oxygen mask on the airplane (“Put your own mask on before attempting to help other passengers….”) is well-worn but still a powerful picture of how important self-care is in being an effective caretaker. Not only does proper self-care provide the energy and resources necessary to care for others, but the self-care that you model will shape how those in your care will treat themselves one day.  For these reasons, it’s useful for “helpers” of all kinds to remember: show yourself the same consideration, compassion and grace that you show those you are caring for, and let that be reflected in your “big rock” choices.
  • Identify your specific expectations for each “big rock” area. These can and will change. In seasons past, ‘taking care of my health’ meant making it to the gym 3-4 times per week.  Recently my health goal is to shower more and brush my teeth on the majority of days.
  • Identify which “big rocks” are making it into your schedule and which aren’t. For those that don’t fit, think about whether it is the expectation or your schedule that needs to be adjusted.
  • Adjust expectations as needed.  Personally, I know that while I have three kids under 5- one with complex medical needs- I will only be able to maintain minimal expectations in many of these areas.  Our family will eat fast food more than I’d like, I’ll exercise less than I’d like, and my hobbies/learning/career will progress at a seemingly glacial pace.
  • Adjust the distribution of your time, committing to your big rocks first.  First, you may want to schedule the big rocks into your week. Many, many tasks compete for the precious little time that the kids are asleep and my hands and mind are free.  It’s overwhelming to figure out what to do with those limited time periods.  So,  Greg and I have a general weekly schedule for our evenings- one night is for watching church podcast together (we can’t bring June to Sunday services with us during RSV season), we each have a designated night out with friends, one evening I study ASL, and one night we just relax and watch our shows. Somewhere in there I get the bills and blogging and my small business tasks and continuing education done. Secondly, you may find, as I did, that you have too much of a good thing– perhaps you are spending a lot of time on a specific “big rock” area at the expense of other things you want to fit into your schedule, too.  Which brings us to…..
  • Make a “to-don’t” list.  After you’ve identified what you DO want to do, it’s helpful during busy seasons to identify what you WILL NOT do, so that you’re not tempted or guilted into cramming it into your schedule.  It feels strange at first because the “to-don’t” list is populated with good, fun things that are probably related to your “big rock” values. Ironically, writing this blog post has been on my “to-don’t” list for two months!  There is a lot of value in recognizing our limits, and stating “for the record” that you aren’t going to do these things right now is a helpful way to reinforce the boundaries we are putting around our time.