Category Archives: American Sign Language

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:


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!

An Election Conversation With My Kids


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.


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


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:  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.




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.



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


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, 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.


The kids inspect some dead wasps


June signs BUG


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.


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

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.


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.


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


June checking out a giant beating heart at the Health Museum


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.

A Day in the Life, Updated #1day12pics

One of the most frequently pinned posts here is A Day in the Life, in which I describe a typical day for us as a family with a medically complex child. So much has changed since I wrote that a year and a half ago- June is walking, climbing, and communicating (signing), she has a g-tube, is NPO (can’t eat by mouth until her trachea fully heals from the LTR surgery this summer) and we have a new little guy here too!  So today I am issuing an update in the fun “one photo an hour” format that has been popular for years but, in true 30-something-mom fashion, I only recently learned about.  I chose October 30th, and I have (at least) one photo from every hour of our day, plus a description of what we were up to- the medical, the mundane, and the unexpected. My hope is that by sharing a little of our experience, I can provide support, raise awareness, and dispel some of the mystery surrounding the special needs/medically complex life.

6 AM


I wake up, Rowan is awake*, and we eat breakfast.

I have one baby monitor watching June and one listening to Miles.

Rowan tries to persuade me to take my coffee, breakfast burrito and cheddar biscuit upstairs so we can play Jurassic Park on the computer during breakfast.

*We opt for early bedtimes for the kids (6-7pm) but that *does* translate into early  mornings, too.  Rowan is up by 6 most days, and June wakes shortly afterward.  Miles sleeps a little later some days.

7 AM


I see on the video monitor that June is awake.  We complete her morning routine including turning off the overnight humidifier, turning off the pulse ox and removing the probe, draining the G-button extension, administering her three morning meds via the G-button, changing clothes and diaper, and then grabbing the new feeding bag, new suction catheters, feeding pump and backpack that we need for the day.

7am (2)

While I gather supplies June gets away from me and proudly sneaks some crackers since the baby gate securing the kitchen was still down from the previous night.  Much of my day is spent keeping June away from food since she is NPO.  Much of June’s day is spent trying to acquire food.

In addition to baby gates securing the kitchen, we keep our kitchen chairs up high or with cushions removed so June can’t use them to reach food (she’s an expert at this).



I mix June’s formula for the day using blender bottles, place June in the high chair and connect her feeding pump to her extension for her morning meal.

I check our pharmacy hours on the web as they were closed the night before when we went to pick up meds.  Sadly, new shorter hours are in place.

I feed the dogs, note that one of them is still inexplicably limping, and let them outside.

Miles cries but I find him still sleeping when I check.  I sleepily decide it’s a Diet Coke morning.

I sit down to do a lesson on my Signing Online course, but June is signing about reading books and asking here Daddy is.  She quickly decides she also wants to watch Baby Signing Time, so I put a DVD on from my instructor set.

I do the 10 minutes of floor exercises that I attempt to fit in each day, and amazingly no one jumps on me while I do.



June signing cereal

Rowan eats a snack and the instant he vacates his chair-with-seat, June climbs up to finish his cereal.  I remove her and a tantrum ensues.

Everyone needs a diaper change, resulting in a very fragrant aroma near the kids’ rooms.  I turn the bathroom fan on, and June walks up and down the hallway outside signing SCARY POTTY.

June’s feeding pump finishes and I remove her milk backpack.  She finds and disassembles the backpack, proudly signing MILK.


I nurse Miles.

Now that it’s business hours, I call the durable medical equipment (DME) company about some problems with our last shipment. (This is that part-time job all special needs parents have.)

While I help Rowan disassemble some Legos, June presses Mile’s bouncer down as far as she can, turning it into a baby catapult. I intervene to prevent Miles going airborne.

I sneak away to brush my teeth and put my contacts in.



June tries to steal my cheddar biscuit snack.

I suction June’s trach.

The kids play, and it gets rough when conflict arises with Rowan saying, “JUNE YOU CAN’T TOUCH MY TOYS!” while shoving, and June signing to me STOP, BROTHER HIT AGAIN.

The hospital calls to apologize about a billing error I inquired about earlier this week.

I call our car dealer to follow up on a maintenance letter we received, and I add a carcappointment to Greg and my Google calendars.

June has a tantrum that I won’t let her play with the clean dishes in the new dishwasher.

I prepare and place June’s feeding pump backpack on her for her next feed.

10 AM



Rowan and I enjoy “smuggling” together.

Rowan asks me to “charge” his iPhone and wonders if it takes pennies. June takes his discarded pennies and places them around Miles in his bouncer.  Miles is awakened unpleasantly by these and other gifts

The kids draw together as their contribution to birthday thank you cards, and Rowan tries to convince June to draw on her forehead.


Being unsuccessful in convincing June, Rowan draws on his own forehead.10AM6

At point point, everyone was upset about something different, but the details elude me.



June plays with stacking toys while Rowan plays on his LeapPad.

June’s feed ends- I remove the backpack and refrigerate the feed bag.

Another round of diapers.

I receive a follow up call from Medicaid about June’s application.  (For a wonderful post on why June would need Medicaid, despite having private insurance and two plan-prepare-saving-oriented parents, see this wonderful post by a fellow special needs parent.)

I slowly work on the written part of the kids’ birthday thank yous.



I nurse Miles, and he drifts back to sleep, guarded from dog noses and sibling presents by the pack-and-play.

The older kids finish playing and sit down to lunch.

June goes down for a nap during which she wears a pulse ox which will alert me if her heart rate or oxygenation venture out of the specified safe ranges.



Rowan and I read the Lorax while June and Miles sleep.

I attempt to nap, but am awakened by Miles needing to nurse.

I download a free augmented communication app for June to try, as recommended by her speech therapist.  But it turns out this free version doesn’t work independent of the paid version so I delete it.


June wakes up from her nap and insists on keeping her pulse ox cord on her foot.

Rowan has a tantrum and refuses to go into time out.  He loses his Legos as a result.

June is also upset that she can’t eat chocolate.

Someone is upset that a LeapFrog toy is out of batteries so I replace them.

I decide its time for a snack.

June settles down and asks to look at the picture frame on the wall- a favorite past time of hers is signing the “name” (like Grandma) of each person she sees in the photos.


And Rowan likes a busy bag activity I set out.

1400 3


Sphinx is being unusually tame, and Rowan decides she needs to try on some hats.

1500 1

1500 2 (2)

I read There’s a Wocket in my Pocket with Rowan and June.

1500 2

Miles nurses and Rowan plays at app on his phone.

June jumps on the exercise trampoline, asks for chocolate, then ventures outside.  Sahara positions herself so she can see all three kids at once.  She is, after all, Assistant Mom. June comes back inside when her diaper falls off- she finally agrees to have the pulse ox cord taken off too.

1500 4

June gets into the kitchen- I suppose one gate was still down from her naptime- and plays with the stinky dog food while Sahara begs.

1500 5

I work on my phone including returning emails, reading in my Bible app, and laughing at these parenting comics.


1600 2

Greg is off of work and we have our customary commute phone call about the day so far.

I ask Greg to skip going to the pharmacy despite their shorter hours because I am looking forward to finishing the busy day at home and relaxing.

Rowan plays with Miles, June has fun cleaning up toys, I check on my Facebook pages, and Miles practices smiling at everyone.


1700 2

Miles has smiling down.

Greg hangs with the kids while I get dinner ready.  I discover I ran out of alfredo sauce, so I make the very grown up decision to use left over Papa Johns garlic butter as a pasta topping.

Everyone eats dinner.

While Greg stays at the dinner table with the kids, I prep June’s room for bedtime including filling up the humidifier with water, drawing up her meds, preparing her overnight feeds and preparing her trach care supplies.


Greg and I take turns putting Rowan and June to bed respectively.

While Greg puts Rowan down, I put the kids’ drawings into the completed thank you cards.

Being Friday, Greg, Miles and I settle in to enjoy the week’s spoils collected on the DVR including Blackish, Modern Family and the feature presentation- the Blacklist.


(OK, not a photo, but I already have more than 12 from earlier.)


Baby Signing Time! (Exciting news…)

I have big news to share.  Soon I will be a certified Baby Signing Time instructor!  Regular readers here know how much of an impact Signing Time has made on our family, as our daughter June uses American Sign Language exclusively to communicate.  I am so excited for the opportunity to share American Sign Language with other families.  I will be able to offer signing classes to children under 5 and their parents, as well as provide Baby Signing Time, Potty Time, Signing Time, and Rachel and the Treeschoolers products to my clients.  See the decision chart below for more information about these products, or visit this link for the entire catalog.  If you have your eye on something, contact me for discounts!


I will have an instructor website and social media accounts live soon. In the meantime, if you are interested in learning more about Signing Time or purchasing any products (the DVDS make excellent gifts!) contact me here or via my This I Know Facebook or Twitter pages.


Our “Homeschool Curriculum” Fall 2015

At the very beginning of this year, I shared why I am so excited to “homeschool” this fall.  I use the quotes because most of the time, “homeschool” with my almost-4-year-old son and almost-2-year-old daughter is woven into everyday playing and errand running rather than appearing more “school-like,” such as doing worksheets at a table.  But sometimes we do worksheets and crafts at the table, too.  And sometimes our sole goal is to make it through the day.  But ideally, these are the skills and activities we are aiming  for in a given week.

Homeschool Curriculum 2015
Our “curriculum” is a hodgepodge of different things.  I started my planning with the Letter of the Week Curriculum from Confessions of a Homeschooler, which I’ll refer to as LOTW.  It’s a great curriculum at an awesome price.  It features one letter a week with accompanying blending ladders, a Bible verse, and optional Spanish language vocabulary, plus one shape and one color per month. However, the LOTW falls squarely in the middle of my kids’ current academic levels, as my son knows the content already but my daughter is not quite ready to tackle letters.  But the crafts and activities are so cute, I decided to plug in and/or modify any LOTW activities I could into the content areas that are important to us.  This is the list of categories we are working on this fall and what we are using for these subjects:

Language Arts 

June does parts of the LOTW curriculum including an introduction to the letter in written, spoken, and ASL form and some large letter or coloring pages which don’t require advanced fine motor control.  I don’t think she’s quite ready to learn the alphabet, but I think she’ll enjoy being introduced to the ASL alphabet concurrently since many of the ASL signs she knows already utilize the letter handshapes.

Rowan occasionally uses some of the letter crafts from LOTW which require more fine motor control, like lacing.  Additionally, he has sight words on the felt board and letter discs to match to interesting words (both very cool activities from Confessions of a Homeschooler).  At this point, we just want Rowan to have access to things he’s interested in, rather than dragging him down any specific path or timeline. And with access to our local BBBS resale sites and a big homeschool resale store, we can try out different things without investing a ton in each rescoure. Rowan is quite interested in letters and reading, but he *really* wants to do everything himself.  He has maintained interest in the sight word felt board and letter discs, with game-like pieces that can be used independently. But engagement with the more directed, school-like activities have fizzled out very fast with him, including Teach Your Child to Read in 100 Easy Lessons (Bad fit for now! Maybe when he’s older), Bob books (I think he’ll like them once he can read them himself without prompting and supervision from us) and Explode the Code (The uncertainty of what word the drawing is representing greatly frustrated *me,* so we set that one aside for now).  He can also complete lessons on ABC Mouse, but even in the guided lessons mode, the difficulty of the work seems to vary widely, and his engagement with it is hit and miss.

Sight Words Caterpillar Felt Board from Confessions of a Homeschooler

Sight Words Caterpillar Felt Board from Confessions of a Homeschooler


I separated actual reading from the “language arts” category above, which contains skills needed to read like letter recognition, letter sounds, phonics and blending.  For “actual reading,” I strive to read to the kids each day, signing along with the book in June’s case and having Rowan read frequently occurring words or sound some out from the story.  Thankfully, both kids love snuggling up with a book- with or without someone reading it to them!

Book worm

Book worm

Gross Motor

Both kids can participate in these activities, which involve moving, balancing, and generally jumping around.  The LOTW curriculum has a few activities and we also find fun ones on Toddler Approved like Alphabet Pillow Jumping and via Pinterest like Toddler Color Hop from Learn~Play~Imagine.  But mostly the kids take care of this category all by themselves.  They are forever climbing on furniture and building obstacle courses with the couch cushions.

Standard couch slide construction at the Safari House

Standard couch slide construction at the Safari House*

*A few notes on this:

1.  This is how the kids get their exercise when we’re cooped up for RSV season. Or when it’s too hot to go outside.  Ok, anytime they’re bouncing off the walls but we can’t go out, really.

2. Yes, this is the usual state of my house currently. Unless it’s Monday.  That’s pick-up-and-vacuum day.

3. That formless mass of energy is in fact Rowan.  I think it captured him quite nicely.

4. June’s looking on like, “I got next.”

Fine Motor

This is an area we emphasize with June because her history of prematurity, frequent hospital stays and her mild hypotonia all impede her natural process of learning these skills, somewhat.  Even with all of these factors, she does very well in this area.  So mainly we try to offer a variety of activities to keep her practicing.  LOTW includes tracing, cutting, and prewriting practice sheets which I sometimes provide to June, but they are a little advanced for her.  Mostly, we provide dry erase surfaces or regular coloring activities for her to practice holding markers and crayons, and we get the felt board out with felt shapes of different sizes for June to play with.  Much of the fine motor practice occurs naturally with household objects like picking up small toys, coins, and stickers, using latches and buttons on educational toys, and building with blocks.  Signing is also a huge fine motor work out.  We always model the correct execution of signs, and occasionally we focus on correcting June’s handshape or placement when we feel that she might be ready to perform a certain sign more correctly.  I anticipate that her interest in the ASL alphabet will propel both her signing accuracy and fine motor skills forward this fall.

For Rowan we replaced the LOTW letter writing activities with a dry erase handwriting pack (Lets Get Ready for School Activity Pack: Letters) and making our own word tracing worksheets which Rowan chooses the content for (translation: he’s tracing dinosaur names).  Rowan also gets much more than his daily quota of fine motor practice in by playing with Legos.

June with Let's Get Ready for School Activity Pack: Letters

June with Let’s Get Ready for School Activity Pack: Letters

Spatial Reasoning

Both of the kids are naturally interested in these activities, so we make various options available around the house including puzzles (toddler for June and preschool for Rowan), blocks and Legos.  We try to point out or make patterns in every day play.  Occasionally I also try to get the kids interested in the mazes and object hunt activities in their kid magazines- without much success; here again, self-directed activities are WAY more fruitful than mom-directed ones.

I had to text this to my husband because I couldnt figure out how Rowan made it

I had to text this to my husband because I couldnt figure out how Rowan made it

Sign Language

Because she cannot vocalize with the trach currently, American Sign Language is June’s only mode for expressive communication.  We play at least one Signing Time episode in the background during playtime every day.  Usually several.  The kids love it , and they know more than half of the signs in the series already. As part of our morning routine when we update the board with the day of the week, we sign the days of the week, numbers up to the current day, and review the signs for colors with the Rainbow Song from Signing Time. Greg and I are really striving to sign concurrently when we talk throughout the day, but that is challenging because true ASL is not a word-for-word translation of spoken English; even the basic sentence structure differs between the two.  But we always sign when communicating in basic sentences with June and when reading to her.

June signing "girl"

June signing “girl”

Art and Music

Art activities occur naturally around our house as well, and as part of the other learning categories.  Rowan likes to excavate dinosaur toys from playdough.  June likes to write with anything, on anything right now.  My written objective is to do letter, shape, and color crafts along with our current LOTW curriculum, but those are good intentions that just don’t happen, especially since the kids are self-directed in this area anyway.

For music, we listen primarily to Dinosaur Train and Jurassic Park (Rowan’s picks), Signing Time songs (June’s picks) and pop music (my picks) on my iPhone, YouTube or the radio.  Listening naturally develops into recognizing the rhythm, notes, and new vocabulary (English and ASL).  I’m always on the lookout for NON-ANNOYING educational songs on YouTube that the kids like. Current favorites are StoryBots,  Signing Time/Rachel and the Treeschoolers, and Coilbook.

Nervously watching June use finger paints- homemade so non-toxic, but still a potential danger to her trach. No corn strach in the lungs, please.

Nervously watching June use finger paints- homemade so non-toxic, but still a potential danger to her trach. No corn strach in the lungs, please.


We opted not to use the LOTW curriculum for counting activities because I felt we had ample opportunities to count during the day without printing many-paged activities out specifically for that purpose.  For June, we often count up to 5, like counting the medicine syringes she’s receiving (#medicallycomplexlife) and for Rowan, we often count up to 20 by counting up to the date, estimating the number of crackers etc we pour, and talking through simple addition and subtraction word problems that come up during the day.  We also have a Let’s Get Ready for School Activity Pack for numbers, but I don’t plan to use that until a later date when we venture into written math problems.

Earning money toward a model T-rex from the museum gift shop

Earning money toward a model T-rex from the museum gift shop


This is everyone’s favorite.  I try to do one simple science experiment a week that we improvise, like vinegar and baking soda variations, freezing stuff, or our weight capacity of boxes experiment, or experiments that stumble upon online, like Magic Milk from Lemon and Lime Adventures, DIY Dino Excavation Kits from Live, Craft, Love, or the Solar System Scale Model with toilet paper from Adventures in Learning.  Baking and cooking fall under this category, too, because any homeschool activity that results in chocolate for me is a winner.

Lesson learned: empty cardboard boxes are deceptively strong

Lesson learned: empty cardboard boxes are deceptively strong

Charting the outcome of box weight capacity experiment with Dada- plus a look at our "homeschool corner"

Charting the outcome of box weight capacity experiment with Dada- plus a look at our “homeschool corner”


Baking = Science Experiment

Baking = Science Experiment

“Field Trips”

We have to stay away from crowds and close contact with kids during the winter time due to June’s susceptibility to respiratory viruses, particularly RSV.  We also remain sheltered when June has a critical procedure coming up.  But whenever possible, we make up for lost time and jump on [economical] opportunities to learn “in the field” whether it’s nature observations at the park, community/holiday events, free museum days and discounted family memberships to a favorite spot (“the dinosaur museum” and the zoo).  So much learning occurs naturally as we encounter the unexpected on these outings, like when we happened upon a giant iguana (with its baby sitter) sunbathing on the steps outside the Natural Science museum.  The kids are so curious and observant at this age, even trips to the grocery store are educational, as they ask about people they see, our food choices and how money works.

Surprise iguana outside of "the dinosaur museum"

Surprise iguana outside of “the dinosaur museum”

An assassin bug that suddenly appeared on my NECK during a playdate at a new park

An assassin bug that suddenly appeared on my NECK during a playdate at a new park.  Luckily I was in an educational mood and researched it with the kids instead of converting it into an assassintated bug.

Those are our goals this fall!  We think of this list more like a flexible guide to our intentions rather than a to-do checklist. Life gets very busy at the Safari House, but thankfully, many of these objectives are accomplished through natural play.  In fact, with a newborn on the way in early September, I’m certain that in upcoming weeks those “naturally occurring” objectives are the only ones which will get done.  That’s totally okay.  Forecasts predict a season of Legos and couch slides in the future.

Hospital Playlist- Top 10 (OK, 20…)

Here it is, the Hospital Playlist Top 10 that I mentioned when complaining about the insufficiency of Christian music several posts back.  I’ll post another list exclusively of “Christian” songs that deserve recognition since not many can edge out the ‘not-specifically-Christian’ competitors below. This isn’t a collection of my favorite songs; typically I listen to lighter songs with guitar and thoughtful lyrics.  But this doesn’t do for hospital stays.  Something about the mood, beat or lyrics of this assorted list meshes well with the hospital life:

In no particular order:

The Show Goes On- Lupe Fiasco

What I like about it: Determination, overcoming hardship.  The hospital stay inspires reflection on your life as a whole, so I identify with these themes not just in light of June’s health but in light of the rocky parts of my history as well.

Lyrics Highlight: Anybody ever wonder, when they would see the sun up
Just remember when you come up
The show goes on

Along These Same Lines:  Lighters- Bad Meets Evil feat Bruno Mars


Little Talks- Of Monsters and Men

What I Like About It: I like the folksy trend seeping into the pop music scene in this band and ones like Mumford and Sons.  I love to hear the variety of instruments used to create a multilayered sound and rhythm.

Lyrics Highlight: Although the truth may vary,

This ship will carry our bodies safe to shore

Along These Same Lines: All Right- Fun


Remind Me Who I Am- Jason Gray

What I Like About It: I love Jason Gray.  My favorite song of his is actually “Without Running Away,” and it will be featured on the upcoming Christian list.  But that song doesn’t speak specifically to my hospital stay self.  This one is a good, simple refocusing song for when my focus is all over the place during the hospital chaos.

Lyrics Highlight:In the loneliest places,
When I can’t remember what grace is.
Tell me once again who I am to You,
Who I am to You.

Along These Same Lines: 10,0000 Reasons- Matt Redmon 


21 Guns- Green Day

What I Like About It: Emotion on a grand scale; something about how it’s composed makes it sound epic, like listening to a weighty piece of literature in a 3 minute song format.  A few songs I’ve highlighted here, including this one, have been called “rock ballads;” maybe that’s the name for what I’m trying to describe.

Lyrics Highlight: One, 21 guns
Lay down your arms
Give up the fight

Along These Same Lines: Sail- AWOLNATION 


Thrift Shop- Macklemore

What I Like About It: I love Macklemore.  He’s talented musically, he takes on daring topics counter to his own genre’s culture, and he openly shares his journey toward sobriety.  And often his songs are equal parts juvenile, unique and entertaining.

Lyrics Highlight: They be like, “Oh, that Gucci – that’s hella tight.”
I’m like, “Yo – that’s fifty dollars for a T-shirt.”
Limited edition, let’s do some simple addition
Fifty dollars for a T-shirt – that’s just some ignorant shit
I call that getting swindled and pimped
I call that getting tricked by a business
That shirt’s hella dough
And having the same one as six other people in this club is a hella don’t

Along These Same LinesCan’t Hold Us- Macklemore


Southern Hospitality (“Cadillac Grills”)- Ludacris

What I Like About It: Unapologetic grandiosity, aggression.  This is one of my favorite songs for hospital stays, and I do realize that blasting these misogynistic lyrics and explicit sex and drug references from my oversized mommy-Prius with a Citizen’s Police Academy license plate frame on the back creates quite a spectacle.  But having a child in the ICU turns you into a walking adrenaline gland.  Your senses stay heightened, whether you’re at the bedside or in line at McDonalds. You are in protection mode and can deftly handle any crisis, anytime. You’re also aware of often being underestimated, and you’re quick to sense others’ attempts to dismiss, overlook, or neglect you or your child. Your “JUST TRY ME” stare is always close at hand. You’ll throw some ‘bows if need be.

Lyrics Highlight: Throw them ‘bows

Along These Same Lines: Power Up- Wreckshop Family, Party Up- DMX , Ruff Rider’s Anthem – DMX


Liquor Store Blues- Bruno Mars

What I Like About It: The bluesy feel contrasted with the faster-than-blues pace and rhythym of the lyrics.

Lyrics Highlight: Standing at this liquor store

Whiskey comin through my pores

Feelin like I run this whole block

Along These Same Lines (marginally?): One Song Glory- Rent Soundtrack


Let Her Go- Passenger

What I Like About It: This is the only slow song that makes the cut here, but the lyrics are beautiful and reflective without being sappy or sad. It goes with a certain emotionally charged, pensive mood that the hospital brings about. See their other song linked below for the polar opposite- a light hearted, somewhat crude pub song.

Lyrics Highlight:You only need the light when it’s burning low

Only miss the sun when it starts to snow

Only know you love her when you let her go

Along These Same Lines: I Hate- Passenger


Shake It Off- Taylor Swift

What I Like About It: I know this is overplayed, but I haven’t gotten tired of it.  I like the message, and I’m impressed with her seeming authenticity as an artist.  This is also one of my favorite songs to watch as a sign language interpretation. 

Lyrics Highlight: It’s like I’ve got this music in my mind

Sayin it’s gonna be alright

Along These Same Lines: All About That Bass- Meghan Trainor 


Cruise- Florida Georgia Line

What I Like About It: It’s a “country crossover” song so it has a unique sound.  It’s mostly about driving, something I love and I’m usually doing when I listen to music so it’s an enjoyable commute soundtrack.

Lyrics Highlight: In this brand new Chevy with a lift kit

Would look a helluva lot better with you up in it

[I had to ask a true country person- an Aggie 😉 – what this lyric was because it sounded like lift kick to me, so I always laugh at myself here]

Along These Same Lines: California 37- Train

QOTD: This Is a Job for Daddy.

Tomorrow marks one month that June has been in the hospital, and we had originally planned on just a 4-day stay. To recap, the various reasons the stay has lengthened include the switch from the two-stage LTR that was planned to the one-stage version, difficulty extubating after the LTR, which led to the need for a new trach to be placed, and most recently, June’s difficulty eating after the surgeries necessitated getting a gastronomy-button (g-button) and Nissen fundoplication.  Hospitalizations are always a wild ride for us.

During the hospitalization, I’ve been staying at June’s bedside during the week, and Greg has been working and caring for Rowan with help from family.  On the weekend, we switch, and Greg stays with June while I hang with little dude Rowan.  This is the first hospitalization that we’ve been able to switch off at the bedside because previously I was still nursing June.  It’s so nice to have this flexibility!  But it’s far from the ideal of having everyone at home. I’ve gathered several amusing quotes from the kids recently which note ways in which Greg was particularly missed in the situation at hand. Some things are simply a job for Dada.


Out of nowhere in the car, Rowan formulated a manufacturing business plan that I know Greg- proud Papa and engineer- would have loved to ask him more about: 

R (holding the new T-rex model he saved up for): Do we have model stuff at home? 

Me: To make dinosaur models?

R: Yes. 

Me: No, we don’t.  It takes big machines to make dinosaurs.  

R: It’s ok, we’ll just buy a big machine.

Me: Well it takes a lot of money, so what if we just buy a model that someone else made with their machine?  

R: No, models cost $25. I need my own dinosaur pressing machine. Is dinosaur rubber expensive?

Me: Yes. 

R: I want to buy expensive things but not use much money.

(Welcome to Capitalism 101, bud!)


At bedtime Rowan was scared by loud thunder.

Me: Do you know what thunder is?

R: Electricity.  

Me: Yes, well lightning is electricity and thunder is the sound. 

R: And can electricity go in water if lightning hits it?

Me: Yes, it can zap you if you’re in water.

R: Why?

Me: That’s just how electricity works. Would you like Daddy to teach you more about it?  

R: I want you to teach me more about it.

Me: Well, I didn’t learn very much about electricity in school, but Daddy studied it a lot.

R: Did Daddy have more school than you?

(I briefly discussed how Greg and I have the same amount of schooling- a lot- but Greg needed to learn about electricity to be an engineer and I didn’t need to in order to counsel people.  And I made yet another mental note to learn some basic physics.)


Also on the topic of science, this came up in the car randomly:

Rowan: Why did the forest catch on fire in Walking With Dinosaurs?

Me: Lightning hit it, and lightning has energy in it that made the fire.

R: Is it the same energy that’s in our muscles?

Me: Kind of. The energy in lightning is electricity, and the energy in our muscles is from glucose, sugar. [I’m questioning my answers as I say them at this point]

R: And why does fire eat everything?

Me: That’s just how it works…let’s ask Daddy….


I am expecting our third kiddo in September, and Rowan insists that he is growing babies, too. His 10 dinosaur babies will be born in September as well. While I was driving home from the hospital recently, Rowan surveyed the back seat of the Prius and asked,

“Where will all of the car seats go?”

Me: Your baby brother’s seat will go right between you and June.  Does that sound ok?

R: What about my 10 dinosaur babies?

Me: Hm, there’s no more space in that seat. What should we do?  Are their car seats small?

R: Yes. Me and Daddy will have to build 10 more car seats. They can go in the back where the dogs sit.


At the hospital, volunteers brought the toy cart to our room, and June got a Rubik’s cube.  I put it slightly off center and handed it to her.  

She looked up from it and signed “Dada.”

(It’s true, Greg is the Rubik’s cube expert in our house.)


I was just napping with June in the hospital bed and she woke up before me. She signed all about wanting to listen to the voicemail Daddy had left for her.  So I played it about 5 times, but I was so tired I fell asleep between each 45 second playing, and June had to wake me up again each time.  Finally losing patience, June signed “want” “you” “me” “stand up.”  She proceeded to stand up, emphatically signed “you,” and towered over me in the bed indignantly with all of her 2.5-foot-tall height until I sat up.


And other gems from this month:

While waiting for surgery, June wanted to put on some of her real clothes over the hospital gown. June seems to have inherited a fashion gene that skipped a generation in Greg and me. After helping her dress, I asked June excitedly- 

“Are you wearing a beautiful shirt?”

She replied quite seriously in sign language: “And shoes.”

Later she kept pointing to her pile of clothes signing “hat” even though there weren’t any hats there.  Clearly she felt her ensemble was not complete.



June loves shoes. She insisted on wearing some into surgery, excitedly signing to the surgical team all about her shoes during the transfer down to the OR.  The team kindly waited until she was under anasthesia to take them off.  


Several staff have joked with June, asking if they can have her shoes.  She answers matter-of-factly in sign, “You have your shoes.”


While he was waiting to visit June in the hospital, a kind stranger asked Rowan about his prized T-rex that he bought at the dinosaur museum recently. After roaring and playing pretend with Rowan, the stranger remarked,

“What a neat dinosaur you have!!”

Rowan stopped in his tracks and replied, “This is a *model* of a dinosaur.”


Driving home from the hospital one day, Rowan asked:

“Are we going in the direction of home?”

Me: Yes, we live northwest of here, so right now we are driving ‘north.’

R: And is this the road the snow comes down?

Me: Um, no, we don’t get much snow here.  Why were you thinking there might be snow though?

R: Because there’s snow at the North Pole. 

Me: Oh, well we’re only going a little bit north.  Not to the North Pole.