Category Archives: Purposeful living

The Accidental Sabbath: Plans for 2017

accidental-sabbath

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 only” day: no outings, no plans, no chores and no to-do list.  We called it a family Sabbath, although we first instituted this for practical reasons and our own comfort rather than as an effort to obey the religious guidelines of Sabbath keeping.

When we first decided to implement this in October, I breathed a sigh of relief, knowing that we would benefit so much from the rest this boundary around our schedule would afford us.  There was one problem though. The only date that worked well for Rowan and June’s joint birthday party fell on the same weekend that the huge Lego tour would be in town. The Lego event that Rowan has been asking to return to since he saw it the last time it came to town two years ago.  The one I had been excited to take the kids to for months.

We looked at three different scenarios: attending an abbreviated weeknight Lego session, packing the Lego fest in on the same day as our at-home birthday party, or breaking our Sabbath guidelines and attending the beloved Lego event on the second day of that weekend.  We decided to break our new rule and go to the event on the second day of the weekend. After all, we made the rule so that we could enjoy the holiday season more fully, and we knew we would all enjoy the Lego fun. This never sat right with me though.  In seasons past when our busy-ness sapped our strength and joy, our schedule was (over) filled with fun, enjoyable things- no drudgery; yet the pace still wore on us. So I sensed that breaking our Sabbath boundary to avoid missing out on something fun and enjoyable was not going to work at all.  I knew that every single weekend during this festival-and-party season, the prospect of something fun, memorable, important or educational would beckon to us, asking to be dropped into that emptied Sabbath calendar square.  Still, I persisted.  I told myself, “We’ll go to the Lego fest this one time, then that’s it- we’ll protect a Sabbath day each week through the end of the year.”

Two days before the big weekend, I went online to secure tickets.  I had delayed, at first, because we were throwing around our scheduling options, and next due to reluctance mixed with a delusional belief that the less popular time slots wouldn’t sell out.  In reality, all of the time slots for this hugely popular, once-every-two-years event sold out long before I got around to checking on tickets.  So we didn’t go.  After the excitement of their birthday party, the kids never even asked about the Lego event that weekend.  They still haven’t- it just hasn’t come to mind. While I’m sure the event would have been a blast, I was surprised that there really was no sting in missing it.  And we had a very restorative day at home instead.

That first experience illustrated to us the immense value of rest, and it revealed that the one obstacle that most often robs us of rest- the fear of missing out- is actually not a very formidable foe; it turns out that the thing we feared- the phantom prospect of missing out on something- never materialized at all.  True, we did not attend the Lego event.  But during our peaceful unplanned day spent at home, we did not miss it either.

This is how we started to implement the principles of Sabbath as a family.  We continued this practice of keeping one weekend day clear for the rest of the year.  We have enjoyed it so much that we are going to continue it indefinitely.

A quick look back:

Unbeknownst to me, this Sabbath idea was percolating at the beginning of 2016.  Last year began with a post about The Big Rocks: Self-Care for Care Givers, which describes prioritizing items in your schedule which are of the most value to you, then fitting in less important or unimportant tasks around those big rocks. It seems as though the rest of last year was a slow, progressive implementation of that post as our family pared down our schedules and our possessions.  That was providential because 2016 was indescribably stressful for me, with so many people, opinions and mistakes thrown into our well-established routine via the Medicaid hoops, nursing SNAFUs, invasion of our introvert sanctuary, the start and shuffling of twice-a-week therapies, the transition from ECI to the school system and ongoing nursing and Medicaid difficulties. This “Big Rocks” process of purposefully stewarding our time and energy protected my sanity last year.  At the same time, I was completing an intensive spiritual discipleship program through our church which introduced me to the works of CS Lewis and other gifted Christian and Jewish theologians.  As I studied, the themes of prioritizing my time and resources and seeking rest stood out to me, given my stress.  Naturally this led to the study of the Sabbath, with is prominent in the Jewish theology I ventured into, and which is the subject of the Bible study I ultimately finished the year on (Priscilla Shirer’s Breathe).

A look ahead:

As I mentioned in the last post, however, this attention to rest and Sabbath results in less blogging.  Or no blogging.  So, while I have many topics and resources I would love to share, posts in 2017 may be sporatic.  If you ever wish to check-in with us or ask a question, feel free to use the Contact button on the blog.   We don’t expect any big medical changes for June this year, since she recently got her g-button out (WOOHOO), and her doctors want her trachea to grow for another year before re-evaluating options for another attempt at removing the trach.  However, Greg is hoping to transition into a new professional field this year, so we are waiting to see what new adventure his school and career opportunities will bring to us as a family, in terms of our routine and location.

We are quite excited about the year ahead.

 

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An Election Conversation With My Kids

election-conversation

One week ago, the kids and I ventured out to the polls for early voting.  The “big kids” (my 5-year-old, Rowan and my 3-year-old, June) had decided who they would vote for, hypothetically, by watching snippets of the debates.  This was our pre-voting conversation- June contributing in ASL.

Me: OK, guys, let’s go vote!
June: I’m scared of boats.
Me: Not boat. Vote.  V-O-T-E. [I showed her the ASL sign VOTE  see here.]
June: Vote, not boat, V-O-T-E. What’s vote?
Me: It’s where I pick who I want to be in our government.
June: Who you vote for?
Me: I’m voting for Hillary Clinton.
Rowan: I’m voting for the same person, the girl in the red shirt [in the first debate].
June: I vote for the moon and stars.
Me: That sounds good, June.  The election is very important because the people who we elect make decisions about our whole country.
Rowan: Maybe our president will help Ms. Clinton.
Me: Probably, because our president and Ms. Clinton are in the same political party.
June: OOh! I go vote. See the party.
Me: It’s a different kind of party. Ok, let’s go vote!
June: I vote. Not boat. With talker in my backpack. [Her new AAC device to communicate with people verbally.]

The kids and I excitedly made our way to the early voting location, which was conveniently located at a church that we frequent for Deaf ministry events.
Me: Ok now, we gotta be quiet while we choose.
Rowan: Why?
Me: So other people can make their choices too. What’s happening here is very important.
Rowan: Why?
Me: Well, whoever wins will be president until you are nine years old. And we want to pick the people who will make the choices that we want them to.
June: I pick the stars and moon and water.

While explaining our voting experience to Greg, later–
Rowan: We picked Ms. Clinton!  She’s our president now.
Me: No, actually, we don’t know who won yet. Everyone in the country gets to vote, then only one person wins.
Rowan: Why is that?
Me: Because our country only has one president, and everyone gets to vote for which person they want to win.  On election day we’ll keep track of it on a big map and find out who the next president is.

Tomorrow is the big day!

Follow along with us tomorrow using the electoral college map printable or digital version and other free election resources from:

Scholastic News 

C-SPAN Classroom

Smithsonian Education

 

Our Homeschool Curriculum, 2016-2017

Our post on this year’s curriculum choices is so belated that most homeschool bloggers are writing about how their first 6 or 9 weeks went. So I’ll just roll that info in here, too.

homeschool-2016

Last year, our approach was so informal that I put quotes around “homeschool curriculum” in the post title.  Last year went wonderfully- the self-directed route was a great fit for both of the kids.  This year I felt that, given the kids’ increased attention spans, budding spirit of cooperation and interest in learning, we could add a little more structure.  So we have more formal curricula included this year, which we work on during a morning routine. We retained a lot of the self-directedness though, by using a self-paced workbox system and leaving the vast majority of the day unscheduled. Still, I had expected some resistance to the structure, but I was pleasantly surprised that the kids *love* it.  They ask to do homeschool on the weekends.  This is what we are up to:

Classical Conversations

egypt-one

I cannot display the timeline cards due to copyright, but each event card features a large photo of a relevant artifact, painting or other work of art like this example from ancient Egypt. The kids love the photos and it really draws them into the topic.

What it is:

This curriculum establishes a broad base of knowledge, covering facts from history, geography, science, art, music, English, Latin and math each week.  The “memory work” for the week is available on CD, and many key facts are incorporated into (good, catchy) songs.  Key points from history are depicted on big, colorful “timeline cards,” and science likewise on science cards. Each week includes a science project, often from the book “Van Cleave’s 201 Awesome, Magical, Bizarre, and Incredible Experiments,” and an art or music project.

How this is going:

Won.der.ful.ly.  Top reasons I love this curriculum:

  1. The broad base of knowledge the kids are exposed to is the perfect medium for inspiring self-directed learning.
  2. The kids fight over who gets to hold the timeline cards when we review them because they are fascinated by the pictures.  Rowan says that ancient artifacts look like dinosaur fossils.
  3. The curriculum INCLUDES ASL ALREADY.  The awesome Timeline Song that recites all 161 historical events from the timeline cards has accompanying ASL hand motions.
  4. Although we aren’t joining one this year, there are Classical Conversations communities all over the country that meet weekly, which makes it very easy to connect with other families who are learning the same thing.  Being in a metro area, we have at least 6 communities within 15 miles of us, and the one we visited recently was amazing.
  5. As far as curricula go, it is very affordable.  The items we invested in (and scored used copies) are designed to last through elementary and even into middle school years.

 

Reading/Writing

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Chicka Tree, activity from Confessions of a Homeschooler

We’re sticking with parts of the Letter of the Week curriculum from Confessions of a Homeschooler  including all of the morning routine (date, days of the week, weather, shape/number/letter of the week, Bible verse), preschool notebook pages, all of the coloring sheets of the week, and the neat Chicka Tree idea in which every Friday we post our letter of the week to our big tree.  Both of the “big kids” know their ABCs already, but we use the coloring pages for fine motor practice and art, and we tie the letter of the week into June’s speech practice and Rowan’s writing/reading.

Rowan is using Explode the Code and BOB books to practice reading and writing. We both got used to the Explode the Code’s illustrations, so they aren’t causing frustration like last year.

 

Math

We are using Life of Fred, a unique story-based exploration of math concepts.  Rowan loves the stories, but the math concepts quickly became a little more complex than what we are looking for.  So most weeks we keep Fred on hold and Greg and I make up word problems for the kids as we come across simple real-life math.

Skip counting practice with side walk chalk

Skip counting practice with side walk chalk

ASL

We were very fortunate to have a private ASL tutor for most of this year provided through Early Childhood Intervention.  (I had to fight mightily for this, since June is not deaf, so any parents of non-verbal children who are seeking ASL support, I will be glad to pass on my experience and that of other parents who advised me.) Now that June turned 3 and is no longer in ECI, we are studying ASL independently through LifePrint’s courses at www.asl.tc, and staying involved in the local Deaf community.  A good number of kids in the homeschool social group that we joined are learning ASL as well, so June has peers to sign with on play dates.

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The kids inspect some dead wasps

Bugs!

June signs BUG

Speech

At three, June transitioned from ECI into the school district, which will provide speech services.  Voice experts at our hospital say that the sounds June is making with her Passy-Muir speaking valve are made with her “false cords” only, not her vocal cords (which may be paralyzed).  Still, they believe she should learn the mechanics of speech via therapy, despite the currently reliance on her false cords. Rowan is eager for June to be able to communicate verbally, since interpreting her signs often take several guesses, so he often coaches her to practice her speech. The school will also provide an augmentative communication device (a tablet with Proloquo2Go on it) eventually, which June can use to speak for her while she’s still learning to develop her speech.

assistive-tech

June practices using a tablet like the one that will run her assistive and augmentative communication (AAC) app, Proloquo2go

“Field Trips”

Much of our learning is done outside of the house, whether it’s our neighborhood park or a museum downtown.  Our homeschool social group has a dozen or more events per month that we can join.  Also, local parks, libraries, museums, churches, businesses, schools, organizations, and neighborhoods offer a dizzying number of free events every month as well.  And there are many paid options, too, especially as more gyms, dance studios, art classes, book stores, science labs etc are offering homeschool classes scheduled during weekdays.

Rowan tried an awesome "ninja class" in a special gym outfitted with American Ninja Warrior-style obstacles

Rowan tried an awesome “ninja class” in a special gym outfitted with American Ninja Warrior-style obstacles

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?