Category Archives: Medically complex

Adventures in Communication

I hope to share more formally about our adventures in communication with June, specifically the use of American Sign Language, verbal speech development, and her assistive communication device. However, for a few months I’ve been savoring some much needed rest and protecting a “margin” against over-busy-ness in my life and that of the kids, which has led to postponing blogging. This little scene was too enjoyable not to share though.  This is a little of the linguistic fun we are having over at the Safari House:

adventures-in-communication

The kids and I arrived at the speech therapy floor of the hospital for the last appointment slot of the day.  Only one other family was there- a mother, father, a preschool-aged girl and an infant.  My phone had died so I said to the father, “Could you tell me what time it is?” gauging his reaction to see if he understood English.  When I saw his uncertain expression I signed TIME as I repeated my question, since pointing to your wrist is a pretty universal gesture.

“Ah, yes!” He said. “Four……forty five?” he said.  I thanked him and we turned our attention to the kids, who were hoping to play together.  Rowan invited the girl into the playhouse he and June occupied:

“Would you like to sit?” he said repeatedly to her.

The girl was uncertain as her father walked with her to the playhouse, whispering to her to say “hola.”  I mentally dusted off my Spanish and attempted to translate Rowan’s question.

“Rowan, tell her ‘quieres sentar?'” I said.

“Um, can you tell her?” he replied.  But the girl and her father were excited about this development nonetheless.  In our short time together, we all proceeded to have a conversation of comical multi-lingual proportions.

“How…..she is old?” the father asked in English.

“Three years old in….” I attempted in Spanish.  “Octobrie? Octiobray? Um, October.”  I said.

June began signing in ASL about the family’s infant daughter, and I attempted to translate this into Spanish.

“She uses the language of the hands,” was my best try at saying ‘she signs’ in Spanish.  I didn’t know the Spanish word for “bee” so my attempts to explain that June liked the bee on their child’s rattle were not fruitful.

To add to the fun, June pointed to a sign (as in a printed notice, not an ASL sign) on the play area that I had reviewed with her earlier.

“What does that say?” she signed (as in ASL sign not a printed notice) while I was speaking with the mother.  The notice was written in both English and Spanish, and in hopes of including everyone in the conversation, I signed ASL while I read the English then signed the ASL again while trying to get the vowel sounds right in the Spanish.

At one point, June was admiring the infant’s pink shoes, and I hoped I learn the Spanish word for “pink.”

In Spanish I said, “How do you say…..these shoes are…..” and at this point I realized I forgot the Spanish word for “color” since the similar ‘calor’ means ‘hot’ so I signed COLOR in ASL which was not helpful at all.  So I continued in Spanish, “like….red, orange, blue….” signing the words simultaneously for June.

“Oh,” the father said, pointing to the shoes. “Rosado.”

“Rosado is ‘pink’ in Spanish,” I said and signed for June.

When we parted, we adults said our farewells in Spanish with English words throw in, their little girl had warmed up to her new friends and held Miles’ face lovingly for several seconds as a goodbye, and June surprised us all by piping up with her ever-growing speech skills and saying in Spanish, “Adios!”

Signing Time and Our Journey As a Special Needs Family

One of the things I am grateful for this holiday season is Signing Time, and how it made American Sign Language easily accessible to our family.  We are over at the Signing Time blog today where we have the privilege of sharing about what a big impact Signing Time has had on our family.  Follow the link below to read more:

Signing Time and Our Journey As a Special Needs Family

Happy holidays, all!

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.]

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.

img_20160923_132332

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 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.