Category Archives: Health

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.

 

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

On November 1st, Texas implemented STAR Kids, a managed care system for Medicaid benefits.  (See here for an explanation of how and why medically complex kids like June have secondary Medicaid.)  Like most families, we could not get any specific information about the change before it occurred, like whether eligibility requirements, family responsibilities, affiliated doctors/hospitals/nursing/DME companies, and program coverage would change or even what agency we would deal with to manage our care.  Like most families, we were very nervous about the change, especially given the lack of transparency.  And now, like most families, we still can’t get any reliable information.  Everyone involved in this giant statewide process is “new” and I’m receiving conflicting answers even about the most basic information like who I speak to in order to update my case.

Are you my service coordinator?

My attempts to find this information went like this:

Asking the waiver case manager back in June as well as in late October:

Me: So will the requirements change? When will they reassess our eligibility?

Waiver CM: I don’t know.  They haven’t told us anything.

Me: Will you continue to handle our case after November 1?

Waiver CM: No one knows.  They haven’t told me.

Asking the Medicaid rep when I chose a managed care provider in October:

Me: So, I’m choosing X for managed care.  So do they provide our case manager then, or is it still our waiver program case manager?

Medicaid Rep: [confused] You’ll have a service coordinator at the managed care.

Me: So that’s who handles changes to my case for the waiver program?

Medicaid Rep: The waiver program?  Is that through DADS [state agency]?  If you’re dealing with DADS you just keep dealing with them.  X is only managing access to providers on behalf of the state.

Me: I don’t know if the waiver is under DADS.  So….I’ll talk to my waiver case manager still and I’ll have a managed care service coordinator.  Do I have requirements to meet and report to both?

Medicaid Rep: Ma’am, your service coordinator will just help you find a doctor.

Me: We have all of our doctors.  I need to make a change to our case.

Medicaid Rep: Let me put you on hold. ….  OK, ma’am, yes, you’ll keep working with your waiver case worker.  Everything else stays the same, it’s just that X will manage the doctors on behalf of Medicaid.

I was relieved at this answer, but suspicious of it since my case manager herself had not been told this reassuring news that her position was secure.  So I checked back with her just in case after the switch.

Asking our waiver case manager after November 1:

Me: So…..I was told you are still our case manager?  I need to make changes to our case.

Waiver CM: No ma’am.  You need to contact your managed care provider.

Calling the managed care provider:

Me: I need to find out who my case manager is.  I need to make changes to my case.

Managed Care: Do you need a case manager or a service coordinator?

Me: I don’t know what the difference is.  We have this waiver and I need to update how we are fulfilling one of the family obligations to maintain eligibility.

Managed Care: Oh, you should talk to your waiver case manager.

Me: I DID.  She says she doesn’t handle this and I need to talk to you.

Managed Care: Oh ok. Hmm.  Please hold, I’ll check….   Ok, yes.  So what’s your zip?  And your waiver?  And the birth date? Ok….you need to call this number…

Me: I just called you.  Isn’t this the managed care line?

Managed Care: No ma’am, it’s the eligibility line for your managed care.

Me: Listen, I just need to know who I will be dealing with, and I need to make a change in our case.  No one knows what’s going on here.

Managed Care: I understand.

And she proceeded to try to explain the layers of programs and institutions involved and ultimately gave me another number to call.

Calling the second managed care number

Managed Care2: So we will need to schedule an initial assessment for you.

Me: OK, that’s fine.  I actually need to make a change to my case right now, too.  Are you my service coordinator?

Managed Care2: [chuckle] No, ma’am.  I’m a scheduler.  I am calling 200 people to schedule their assessments for the next 5 months, and once they are scheduled a case manager will assign everyone to service coordinators before their assessment dates.

Me: So, I may not have a service coordinator until April.

Managed Care2: Yes, but if you need anything before you have a service coordinator assigned I have this other number for you to call……

Me: [SSSSIIIIIGGGGHHHHH] Ok.  Well have any of the eligibility requirements changed?  I noticed that our waiver is no longer on the waiver list on the Medicaid menus, and someone said it was going away.  Is it going away?

Managed Care2: Um, it’s my understanding that nothing has changed.  We wouldn’t discontinue any waivers- we don’t have the power to. Only the state of Texas can do that.

Me: Ok.  So, is the state of Texas discontinuing our waiver?  It isn’t even listed on your phone menu options.

Managed Care2: [in a state of wonder] Well, I don’t know, I haven’t heard anything like that.  I’m new to all this!  Have you seen our website- it has wonderful information.

Me: Ah.  I. will. check. it. out.  Thanks.  [The last time I checked the Medicaid websites, both the old the new ones, the information basically amounted to “Medicaid is changing to STAR kids on November 1!” but it did not have specific updated forms and requirements.]

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.

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 Outings: Misunderstandings and Judgments

This series focuses on special needs family outings: what goes into the decision and what comes out of it.  The last post featured two mall outing opportunities that appear identical, but are actually on opposite ends of the spectrum when viewed from a risk assessment perspective.  Consequently, one invite was accepted and one was declined, which would be puzzling to an outsider to whom the invites appear the same.  Special needs families know all too well how often this situation occurs, and the unfortunate misunderstandings and judgments that can result. The already difficult process of making travel and outing decisions can feel like a mine field of potential interpersonal conflict. 

At this point in our journey, we as a family are blessed to be surrounded by wonderful friends and family who have invested time into understanding our circumstances, so we rarely deal with these difficulties nowadays.  But along the way we’ve experienced each of these misunderstandings at some point, and we’ve heard countless similar stories from others in the special needs community.

Today we’ll take a look at a few misunderstandings that special needs families often face and how they can be managed.

special-needs-family-outings-misunderstandings

The last post hit on the most common type of misunderstanding:

1. People outside the family seek and/or assume black-and-white rules for the family’s outing decisions when, in fact, none exist.

open-book-1424269

Usually the root of this problem is that others assume the special needs family has been given straightforward “dos and don’ts” by their doctor, leading to questions such as,

“I thought you could leave the house now.”

“Are you allowed to go to the mall or not?”

“You mean can never be around school kids?! That makes no sense.”

If the family has an opportunity to explain in response that travel decisions are based on risk assessment rather than absolute dos and don’ts, the misunderstanding usually clears up quickly.  However, other people’s receptivity to this explanation is usually directly related to how often they use this type of risk and benefit assessment in their own decision making; occasionally people find this approach so foreign that the misunderstanding ultimately remains.

If the family is not given the opportunity to explain (or if they choose not to), people may make unfortunate assumptions about what appears to them as inconsistency in the family’s decision making.  We’ll discuss this below.

A second type of misunderstanding or source of conflict is when

2. People seek to make accommodations for the family but are disappointed with the results.

hands-1438638

People who understand the decision making process may offer to mitigate some of the risk in hopes that the family can attend or participate more fully in an event, which is wonderful!*  However, if for whatever reason, the family is still not able to do what the well-intended person was envisioning, that person may very naturally feel disappointed, sad or even resentful.  In the mall scenario, the second friend may say,

“Can I help carry the stroller over the narrow parts?”

“I can run after the kids if they leave the play area…”

In the example, those are big helps. And they represent significant effort on the part of the friend who has 2 preschool kids in tow.  However, the friend may not realize that these helps only address minor aspects of the total risk, leading the family to decline despite her offer. The friend may understandably feel like she’s “bending over backwards” trying to get together and that her generosity is not appreciated.

(*Sometimes offers of help do tip the scales so that the family can go.  If so, HOORAY!  Win-win!)

The last common type of misunderstanding is often an outgrowth of one of the first two types we discussed.  It occurs when,

3. People make assumptions and judgments based on what appears to them as inconsistency in the family’s decision making.

Judgment and misunderstanding

Routinely in special needs forums, people recount heartbreaking stories of loss of relationships due to this type of misunderstanding.  This misunderstanding usually starts when someone is disappointed in the special needs family decisions- perhaps the family cannot attend this person’s event, or cannot see them as often as they used to, and/or this person begins to take personal offense to any activities the family is able to do without them, viewing it as the family’s declaration that they value that experience more than they value that person.  Again, it is easy to see how this occurs from our two mall outings example, when activities which appear identical to outsiders actually carry very different levels of risk.  In any case, this person is disappointed initially.  The either don’t understand or don’t accept the basis for the family’s decision, so they create their own explanation, often as their disappointment is blossoming into sadness, anger, resentment or grief.  Some sadly common examples of things that are said about special needs families in these situations:

“They just went to the mall last week.  They can go.  They just don’t want to.”

“They use that kid as an excuse.”

“They saw Talia last month.  I guess I’m just not as important to them.”

“I bet they aren’t coming because they’re embarrassed that [they don’t have…../their kid can’t do…./they can’t do xyz….]”

“They said that their kid has [xyz problem] but I saw him doing [abc], and that doesn’t make sense.  I don’t think he’s as sick as they say he is.”

“They make a big deal out of everything.  They just want attention.”

Naturally, the relationship suffers when disappointment ushers in anger, resentment, gossip, and judgment on its heels in this way.

So what can be done?

For special needs families and those close to them alike, communication and grace are the simple but powerful keys. 

These can be put into action by:

  • Everyone involved remembering that the special needs family is solely equipped and empowered to make these choices. Each decision is so unique that it really can’t be compared to others or evaluated by those outside.
  • Special needs families proactively sharing their decision making process to others, when possiblenot with the aim of justifying the decision but rather to raise awareness of the process for their own sake and that of other special needs families.
  • Those close to special needs families asking questions about the family’s needs and/or how they can help.
  • Both sides bearing in mind that patience and grace will frequently be needed as they work to understand each other.
  • Both sides taking the risk of talking over their misunderstandings and disappointments with each other and resisting the slippery slope of judgment and gossip.
  • Special needs families who find themselves being judged should likewise avoid the unhealthy trap of vilifying, gossiping about, hurting the one judging them; rather, they should confront the person involved as gracefully as they are able, which will end the cycle of misunderstanding and judgment either in a resolution or in cutting ties.

    Soon we will explore a much more fun aspect of this complex topic: sharing some of our own adventures including what travel and outing plans worked well for us, what didn’t, and how our decision making in this area is changing as the kids get older.  

    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!  

    Special Needs Record Keeping

    Parents of medically complex children handle reams of paperwork- that which we review, sign, and much of it we are given to retain for our records.  It’s all part of our secret part-time job.  My rule of thumb for filing vs recycling is that if it can easily be found on the internet or in books I own (ie vaccination info, first aid, general parenting advice), if it’s an easily accessible record such as on the hospital’s online patient record portal, if it’s legal form letters (hippa, liability, institution policies) or if it’s not likely to ever be an essential reference (dme packing lists), then I recycle them.  This rule usually eliminates any information that isn’t especially helpful and specifically about June.  This has helped me pare down significantly the files I retain, but it still leaves quite a bit. After not quite three years of using this system, these are the records I’ve retained- the “short” stack on the left is medical bill records, and tall stack of files is the actual pared-down medical data on June, and the spirals are my own notes from doctor visits and hospital stays.

    Special Needs Record Keeping

    I found that June’s records alone were taking up a whole file cabinet drawer.  When I sat down to write a “concise” review of her medical history for a genetics consultation, I had to admit that at this point and volume of data, I needed to further organize it in order to make it useful.

    Previously, I saved the medical bills in folders by year, which works well for  the annual schedule of our flex spending, health savings, and taxes etc.  But I kept all of the medical data in one folder (and then a second and then a third) filed chronologically, rather than splitting it all up by institution, year or subject. The reason for this bulk file approach, besides not having toddler-free time to work on filing systems, is that for a good portion of June’s early life, every service, specialty, and institution was delivered inpatient.  If I were to break it up- would a dermatology consult while inpatient go in the hospital file or a specialist file? Would g-button instructions from the hospital go in a hospital folder or in a surgical info folder? Would g-button instructions from the DME company go along with those hospital g button instructions (wherever those end up) or with the DME file, or with the hospital file since we received them while inpatient? On and on and on. So I just put everything into one file chronologically until that system became ridiculous, which is now.

    I picked a hybrid organizational system for this data including a general medical data files separated by year- data which I further thinned- and specific files for organizations when they have enough paperwork to warrant it.  So the tower of paperwork has been distributed among:

    -4 files of general Medical info: 2013, 2014, etc which includes anything not in the folders below; this tends to include timeline-relevant info on June’s health including pcp, specialists and inpatient

    -Medicaid

    -ECI

    -DME

    -Speciality pharmacy for Synegis

    -Speciality pharmacy for Lovonox

    -3 files, one for each nursing agency we’ve had the misfortune of utilizing

    -My notes spirals

    -Surgery photos, pictured below.  This includes her two trach placements, g-button surgery, larygotracheal reconstruction, a lot of bronchoscopies and various minor sedated checks and OR procedures, with each procedure netting between one and three of these surgery photo pages.

    Surgery Pictures

    The files are all manageable and easily referenced.  I think this system will serve us well for a while, which is good given that it took me a year to finally sit down and cross this off of my to-do list.  And the motivation for it- writing the “concise” review of June’s medical history- was well worth the effort.  Doctors are using to try to draw connections between her varied symptoms and history to see if a genetic syndrome might be present, despite no clear diagnosis from the exome sequencing.  But just as valuable to me is the fact that I have a copy of it in her medical bag and can quicky give any new professional a concise but thorough history of her so they can have a complete clinical picture.

    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.