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Rely on your Support Team August 27, 2015

Posted by adaptedworld in Uncategorized.
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We freely admit we have spoiled Miss B (no tough love here) so much that she prefers to be held and just tolerates all other seating positions, making us perpetually hunt for a magic chair for her.  There are seemingly amazing seating systems out there but usually the price is prohibitive and/or they are manufactured overseas and would cost an arm and a leg to ship it even if the distributor was willing (if you follow Adapted World on Facebook you’ll see I’m constantly drooling over cool equipment like the P Pod or the Comfee Seat). Given the challenge finding a magic chair within budget you can imagine my excitement when a second-hand size medium Chill-Out Chair came across my radar for only $100.  Of course there was a catch…it was located over 5 hours away from us and the chair was too monstrous to ship easily!

Luckily for Miss B her aunts, uncles and cousins live within an hour away of its location so we mobilized her family support team.  Once we figured out the dimensions and that it could fit in their car my brother, sister-in-law, and nephew made the trip out to collect the monster of a chair, finding a way to make the trip less inconvenient by visiting a local museum at the same time.  Then my sister collected it from their small condo and stored it in her home until my parents were able to make the long drive North to deliver it to our house—Such amazing teamwork from Miss B’s biggest fans!

Once it arrived, Miss B took to it instantly, falling asleep leaning against its memory foam sides. Because it was clear the chair was a keeper we moved it from the corner under her toy bar into a more central position in our sectional couch so she could more easily enjoy her favorite shows and movies (it’s good to be the Queen!).


As you can see the Chill-Out Chair is huge (it looks more like a size large and a size small would have fit her much better) so we relied on our online support team of Moms of children with special needs to figure out how to modify it for her.  First I tried a supportive Snuggin Go Too that I had heard about and bought (using a gift certificate from an online contest that Miss B’s last Halloween Costume had won)


Unfortunately that didn’t work over time (I think like the Princess and the Pea our little Queen didn’t like the hard plastic inserts behind her back) so it was time to go back to the drawing board. I had also heard about a reasonably priced Noodle Pillow being used for positioning because it was memory foam and could be molded into any position so I purchased a couple to use to make the Chill-Out Chair smaller. I inserted the Noodle Pillows into the sheath of the U-Hold Her I had made a while ago so her high tone couldn’t push the noodles out of position as easily.


Once she was better positioned in her chair then it was time to create a more active entertaining atmosphere.  For this we relied on a trick her Teacher uses in her special needs classroom at school (her school support team), wirelessly stream iPad apps on to a Smart Board using AirPlay.  Although we do not have a Smart Board at home, when Miss B’s Grandpa no longer needed an Apple TV we gratefully took it off his hands and hooked it up to our big family room TV so we could essentially project her favorite iPad apps on to it.


Although it’s not a perfect fix for her seating issues (she can still go into full extension while in it) it works well enough and we are happy, thanks to her support team, that Miss B finally has a place to sit comfortably upright next to us in our family room (until she decides she has had enough of it anyway) where she can be easily entertained.

Because all of her seating is a work in progress, we also bought Noodle Pillows to use to help contain her more snuggly in her Convaid Rodeo (getting rid of the stiff pool noodles).


Hopefully this will keep working for her for a while but if not we can always call on her Durable Medical Equipment support team for help with other potential seating modifications.

Gaze up toward the heavens July 14, 2015

Posted by adaptedworld in Uncategorized.
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Some days it’s just hard to get things done on time. On those days when Miss B is awake and immediately wants to get out of bed—having been there for more than 8 hours, not necessarily asleep but in bed, nonetheless—distraction is necessary to keep her from having a mini-meltdown while I wash her syringes and get her morning medicines ready.  Those are the mornings when we turn on her Mosaic Flexible LED lights that are attached to her bed or more recently break out her Laser Twilight Projector (a Christmas present from her aunt, uncle and cousin) for visual stimulation and her trusty old Homedics Color Motion Cube (bought many ago and I’m not sure they even make them anymore) for musical ambience:

She has so much fun gazing at the ceiling and watching the stars and celestial clouds move, some days I don’t want to get her out of bed and get her ready because it’s as though she’ll have fun, fun, fun until her Mommy takes the stars away  ;)


Make-A-Wish Upon a Star June 24, 2015

Posted by adaptedworld in Uncategorized.

It was time for our biannual family trip to Disneyland but I was hesitant to schedule it because in October 2013 Disney Parks had discontinued the Guest Assistance Card (GAC) due to widespread abuse.  The replacement card, the Disability Access Services (DAS) Card, was nowhere near adequate for Miss B because waiting a specified time presented major challenges due to her complex medical needs. That is, while waiting for a specified DAS return time Miss B could need to be catheterized or tube fed, experience a seizure that fatigued or significantly distressed her, need a nap, become overstimulated or overheated, or become physically uncomfortable in some way, all of which would prevent her from getting on a ride when it was time.  The GAC (which allowed her to enter attractions via the exit and then wait for a special vehicle that could accommodate her wheelchair—during this relatively short wait she sometimes has a seizure) was her only viable access option so we were disheartened and very concerned about her ability to enjoy a trip to Disneyland when it was discontinued.

I explained to her siblings that we couldn’t just make the long trip to Disneyland and test out the new system (which changed again in November 2014 such that the DAS is no longer in card form but is now electronically associated with party members’  theme park tickets) because there was too much of a risk that all the trouble wouldn’t be worth it for their medically complex sister.  Yet Miss B’s siblings continued to ask when they were going to be able to go to Disneyland again with her. We all definitely fondly remembered her big smiles during her favorite attractions on our last visit; therefore, remembering that one of the Disneyland Cast Members had noted that Miss B’s GAC was almost as good as a Wish pass I contacted Make-A-Wish to see if we could use Miss B’s Wish (she has been eligible for many years due to a life-threatening medical condition, her chronic kidney disease) to gain access without any fanfare (watching the Batkid and his fans in San Francisco was inspiring but definitely not what Miss B could tolerate) and without any negative impact for another family who may have less resources and support than we do (indeed, we have taken her to Disneyland three times before). Thankfully, I quickly learned from the Program Director Beth Nolan that Make-A-Wish Greater Bay Area was able to provide a Wish to all eligible children and that each Wish can be appropriately personalized. Following approval from Miss B’s Pediatrician and a visit by her Wish Team, Charles and Catherine, a Disneyland Wish was granted!

Miss B’s medical equipment and supply needs make flying a challenge so Make-A-Wish arranged for us to travel by RV instead. After our chariot was appropriately decorated by her siblings we started our adventure to the Happiest Place on Earth!

RV Window 1 RV Window 2

Decorated RV

We stayed at a Disneyland Resort Hotel so we could take Miss B back easily for naps when she was tired or for breaks when she was overstimulated. We were pleasantly surprised to discover upon arrival that her room had a perfect nightlight for her—the headboard lit up and played “A Dream is a Wish Your Heart Makes” in her favorite chimey music :)


At the parks she used her Wish pass to easily access her favorite indoor dark light up musical rides.

Here she is waiting to get on Pirates of the Caribbean (which she rode 3 times in her Dad’s arms!),

Waiting for Pirates


Enjoying It’s a Small World (in a special boat that can accommodate her wheelchair)

It's a Small World Boat Lift

It's a Small World 1

and taking on Zorg as a Space Ranger (again in a special car–if you ever wonder why a ride stops briefly, it may be a child like Miss B boarding in a wheelchair)


During the day when she wasn’t riding her favorite rides or napping in her chair or at our hotel, she stayed cool or was tube fed in the plush Wish Lounge

Wish Lounge

Thanks to Christine in the Wish Lounge she enjoyed VIP (!) access to her favorite (and also new to her) nighttime shows:

The World of Color

World of Color Scene

Miss B World of Color

World of Color

The new LED Paint the Night Electrical Parade (perfect for children with Cortical Visual Impairment)

{Thanks to Colin, the Guest Relations Cast Member in the VIP seating area, her siblings were well entertained while waiting for the Parade by changing the color of Glow with the Show Ears using Sorcerer Mickey Wands he lent them}

Mickey Sorcerer Wands

Parade 2

Parade 3

The Fireworks

Fireworks Fun


And Fantasmic

Fantasmic Fun


Of course we couldn’t resist buying Miss B a couple practical souvenirs (Disney Parks Mickey Mouse 2015 LED Light Up 30″ Necklace Lanyard for visual stimulation


and a Disney Parks Misting Fan to cool her down)


Even though everyone was exhausted (from walking over 6 miles per day and from limited sleep without a night Nurse) and it was starting to get too hot for Miss B, we all had so much fun her siblings didn’t want to go home!


Many heartfelt thanks to Make-A-Wish for a very memorable and fantastic adventure our family will treasure for years to come!

Find a way to Play Together April 27, 2015

Posted by adaptedworld in Uncategorized.
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Early on when Miss B was infant and toddler aged we discovered that big vestibular movements made her smile and laugh so we were determined to find as many ways for her to experience her love of swinging.  When we learned that our local neighborhood park had upgrade plans we reached out and were pleased when they were willing to add a special needs swing to their list of improvements.  Not too long after that we moved to a larger home (to be closer to the hospital she frequents and to have more floor space for her growing list of equipment) and again asked if our local parks would add a special needs swing to their pre-existing structures. With minor pushback (always funding related) we were once again thrilled when our wish for a special needs swing was granted.

Up until this point we were more focused on her individual experience of joy (and ours vicariously) so this simple park adaptation fit our needs.  It was not until Miss B started attending her local public school for preschool and elementary school that we understood the broader impact of our daughter being included in a park activity. For example, after she started attending school we started witnessing children we had never seen before approaching our daughter and saying hello to her when we were out and about in our community.  These children had had a chance to interact with her in some way at her local school and had learned that it was ok to say hello to her even if she could not respond in the typical way. Obviously this simple acknowledgement had a big impact on us but it was even more powerful for her siblings to see children they did not know enthusiastically greet their sister in this way, instead of just staring at her as we all walked by.

For this reason I was impressed when we learned that a friend (thanks Sue!) was helping plan a new inclusive playground in Burton Park in San Carlos.  Burton Park’s inclusive playground opened in October of 2008 and is designed for children of all abilities with smooth surfaces, ramps, accessible swings and both sound and water play components in its design.  This was one of just a few inclusive playgrounds in the San Francisco Bay Area that helps promote acceptance and community outside of the school environment.  Thankfully, just last week another local inclusive playground, The Magical Bridge Playground, opened in Mitchell Park in Palo Alto, after many years of planning and fundraising.

I was out of town (at my oldest’s Volleyball Tournament) the weekend it opened but Miss B’s Dad took her to the park the day after it opened to check it out, shared pictures of how crowded it still was at 6pm on a Sunday and noted that we need more inclusive playgrounds in this area!

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That day she mostly enjoyed the laser harp which created melodic harmonies as she was wheeled back and forth underneath the invisible strings of its arch.

I took her back later in the week and was definitely impressed by the park’s accessibility, inclusiveness and ingenuity as I watched a toddler play flower bells for her that were made of sawed off oxygen tanks with golf balls as the ringer


and a herd of children push the merry-go-round while she was on it.

Besides watching her sit back and enjoy the spinning sensation on the merry-go-round (and the added bonus that I did not have to push her on it ;) ), my favorite part of our visit occurred when I was putting her in the special needs swing (before she decided she wasn’t in the mood and used her high tone to try to arch her way out of it).  I overheard a young girl who was already on the swings say to her Mom “the best thing about this park is that it’s for kids in wheelchairs too”—even a child without special needs knew how important it was for all children to experience the power of playing together :).

To find an accessible playground near you click here!

Listen to the birds sing January 23, 2015

Posted by adaptedworld in High Tech Toys.
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I had considered getting a few Digibirds for Miss B for Christmas knowing that she’d like their tweety songs but I was discouraged by the fact that it seemed like I would have to activate them for her by whistling at them.  Then a parent of a child with similar functioning shared a video on Facebook of her son using a little Step-by-Step switch to activate them (thanks Chaney!). Motivated by his success and enjoyment I was excited when I found a 3 pack of Digibirds at our local Target and was able to use a gift card Miss B got for Christmas (thanks Uncle Pete and Aunt Jean) to buy them for her.

Once we got home, Miss B’s big sis couldn’t wait to try them out and her techie little bro was quick to download the Digibirds App.  Each bird has a power switch on its belly that allows them to sing synchronized as a group if it is flipped to the left and solo if flipped to the right.  To sync the Digibirds you need to turn them on one by one and wait for them to communicate with each other.  The first Digibird will play 3 tones and shake its head when it is first turned on. Each additional Digibird will play 3 tones when it turns on and 3 tones to synchronize with the other bird(s).  Once the second bird moves its beak you can start synchronizing the third Digibird.  If you try to add a Digibird to the group and notice it shake its head it will not sing along with the others so you need to sync it again. Once the birds are synced you press a song on the App and it will play 3 tones.  When the Digibirds hear the 3 tones they will start singing the song together


To use a switch to activate the Digibirds you need to be able to record the tones from the app onto the switch so that it can play those tones to the Digibirds when the switch is pressed.  Miss B’s BigMack single message communicator has this function so we used it to switch adapt the Digibirds.


Once her BigMack and the Digibirds were set up she was ready to listen to them sing


She definitely likes her Digibirds’ singing, even when one decides to sing its own tune (she is looking away from them in the video only because her Cortical Visual Impairment sometimes makes it difficult for her to hear and see things at the same time i.e. she has sensory integration difficulties).  After witnessing her enjoyment, her little brother made sure to play the games on the app in order to unlock more songs for her ;)

Adapted Digibirds


Our cats like them too, keeping a close eye on them and waiting for the perfect moment to attack :)

My only complaint is the Digibirds require 3 button cell batteries each so it costs as much to replace the batteries as it does to buy a new Digibird!

Just keep swinging. January 7, 2015

Posted by adaptedworld in Low Tech Toys.
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Just keep swinging. Just keep swinging, swinging, swinging. What do we do? We swing, swing.  Her name is Miss B and she is a swingaholic.  As her parents we are not ashamed to admit that because we are addicted to her big smile we enable her swing addiction.

So in addition to her indoor swing and play structure swing, this past May we added an Air Chair Swing in the shade of one of the big Oaks in our backyard.


She loves to sink in the deep swing seat and the foot rest helps elevate her legs so she doesn’t slide down.


Although her siblings love to sit in it and swing in all directions, we learned pretty quickly to be careful how many directions Miss B swings in it when she has just eaten or is too full or our little refluxer will become a vomit comet {sorry this is TMI for anyone who is not way too familiar with the potential projectile effects of low tone and poor motility  :/ }

Be inspired October 31, 2014

Posted by adaptedworld in Uncategorized.

Miss B has always loved the Monterey Bay Aquarium, particularly the jellyfish exhibit.


A couple years ago the Aquarium opened The Jellies Experience and she felt at home in the dim environment with light up exhibits and psychedelic music. She seemed to particularly enjoy the walk-through Comb Jellyfish


so this exhibit inspired her Halloween costume this year…a light up jellyfish!

I had envisioned the light up part would look something like The Florabrella (which I discovered after I had made her costume); however, because I lack electrical engineering skills I had to come up with a very simple design.  First, I found a clear bubble umbrella at Target.  Then I searched the internet without success for battery operated rainbow LED ribbon strips with a chasing function, hoping to create the light up effect of the Comb Jellyfish as it beats its comblike plates to move through the water.  When I was exhausted by my search we headed to local stores to see what was available and I have to say this is the only time I have ever been happy that there were Christmas lights in stores before Halloween!  I was pleased to find battery operated multi colored LED dew drop lights (again at Target!) that looked light enough to tape on the inside of the umbrella.

I used two 9.6 foot strings and started by attaching one battery pack to the inner spokes with a twist tie.


Then I stretched its string down one spine, near the ribbon at the edge, and then back up another spine, using clear packaging tape to secure them in place. When the first string ended, I taped the other end of the second one to the first and continued until it ran out.  I wasn’t able to light up all 8 spines with 19.2 feet of lights so the last section ran between two spines.


Finally I secured the second battery pack with twist ties to the inner spokes (see photo above) and then covered the empty space around the battery packs with bubble wrap to hide them.


After adding the bubble wrap strips for tentacles at the end of each spine and covering the top of the umbrella with a little more bubble wrap (because the only umbrella available at Target had pink trim) it was time to figure out how to mount it to her wheelchair.  I had saved the mount from her Shady Baby Parasol so Miss B’s Dad sawed the pink handle off to make it fit.


Unfortunately, securing the battery packs at the top of the umbrella to keep them out of the way made it too top heavy for this mount so he ended up inserting the handle-less umbrella into a 3/4″ PVC pipe.


Then he cut a notch in the end of the pipe so that it could be perched on and secured to the frame of Miss B’s wheelchair with zip ties.


Finally, I covered her the seat of her wheelchair with a white pack n play crib sheet (I cut holes for the wheelchair harness before we wheeled her around in it)


and put Miss B into it. It seemed to work well enough (the PVC pipe only fell off its perch once while trick-or-treating when we went up a driveway to get on the curb) and best of all she really liked it :)


Especially at night <3


We added a white blanket and the extra bubble wrap to keep her warm (and dry if it rained because the umbrella was not covering her legs) and while we were trick-or-treating we realized for extra fun we should have dressed Miss B as Spongebob displaying his captured Jellyfish…it was the best costume ever for her…so maybe next year I’ll see if I can convince someone with electrical engineering skills to make the Florabrella for her ;)

{Addendum 11/3/14}

The minute Halloween was over her crafty sister found a new use for the battery operated lights as a border around her (and her brother’s) bulletin board :)


Relax and Enjoy the Show! September 17, 2014

Posted by adaptedworld in Low Tech Toys.

Now that Miss B is 10 (!) we decided it was time to redesign her “Little Room.”  We kept the resonance board for use with her UbiRock vibration speaker but dismantled her PVC pipe toy gym and put up a sensory cave (made from a  white sun shelter –10th bday present from one set of cousins and their parents) in its place.  In this sensory cave we will introduce different visual, auditory and textural elements to create both relaxing and exciting environments for her to enjoy.

For example, when she is in a mellow mood (and easily overstimulated) we can use her retro rotating color wheel with her fiber optic light for calming exploration


(NB: these videos don’t capture the actual lighting effects because the video is too dark without the flash on and although it is much brighter than what she is experiencing with the flash it is better for capturing her expressions)

When she is in the mood to party we can use her Lightshow DJ (10th birthday present from her other cousin and his parents :) ] that projects lights in time with music , her Hydra-Sphere sound-sensitive lighting sculpture and LED color changing christmas lights  (hung from the edges of the shelter using light clips).


When she is in an even more active mood we can create an almost rave-like atmosphere with her LED mirror disco ball light [christmas present from her Nana], her fiber optic light and her Lightshow DJ all on at the same time!


Miss B has collected quite a few light up toys and sensory items (like this lavender scented hippo) over the years that will help us create different Snoezelen type multi-sensory environments so this is just a sampling.  Also, all of these items can be switch-adapted for environmental control using either battery interrupters (if they are battery operated) or a Powerlink3 (if they have a power cord) but for now we’re just letting her relax and enjoy the show! :)

Travel Safely and in Comfort (Part 2) August 29, 2014

Posted by adaptedworld in Equipment.

For a while now it has become clear that Miss B’s Britax Traveller Plus wasn’t meeting her positioning needs in the car.  Without lateral supports her trunk tilted left, contributing to the development of scoliosis.  She also threw her hips into extension frequently, requiring constant readjustment out of this uncomfortable position in order to avoid a meltdown (even short drives to pick up her siblings from school were a challenge if she hadn’t slept well enough or had a distressing seizure in the car).  We found a temporary fix to keep her hips in flexion by using a pool noodle to lift her knees but that was only comfortable for so long; therefore, once again we worked with her therapists to find a better car seat option and even consulted with the Car Seat Safety Technician at our local hospital.

The Convaid Carrot3 seemed to be the best fit so after we sat her in a demo car seat her CCS therapist had obtained from our Durable Medical Equipment (DME) company a request was submitted to our primary insurance for coverage.  Of course, although typical car seats are not supportive enough, special needs car seats are considered a convenience item so it was denied by our primary insurance.  Thankfully, however, our secondary insurance covered it.  We waited several months for the denial and then the approval but it finally arrived as an early birthday present for Miss B! A new car seat for a new decade. :)

After our DME Technician delivered and assembled it—it’s quite a complicated piece of equipment because it is designed with inserts that can be added to allow the car seat grow with the child—I installed it and had Miss B test it out in our garage.  Just like during the demo trial, she seemed comfortable and well supported.

It comes with a snug headrest that keeps her head from tilting.  The Carrot3 cannot be reclined safely more than a 30 degree angle while the car is in motion so Miss B can still drop her head forward fairly easily but she seemed to hold it up fairly well during our test.  The Carrot3 uses the car’s seat back to determine the recline angle so if the seat can recline flat the Carrot3 can do the same, a potentially useful feature for diaper changes.

There is a chest support that needs to be at armpit level or below which thankfully she doesn’t seem to mind; the catch is that the height of this chest support is adjusted at the same place the harness straps are tightened so once I accidentally grabbed the wrong strap and ended up unintentionally lowering the chest support.


Extra accessories ordered for Miss B included firm laterals to keep her trunk from tilting and footrests to help support her legs (the footrests have velcro straps to secure shins and feet in place, if needed).

Carrot3 side view

We also ordered a tray to support her arms and upper body and hope it will make long car rides more tolerable by providing a way to keep entertaining toys within reach. It is made of a soft black material so it will serve as a great contrast for her favorite light up toys (very Cortical Visual Impairment friendly).

IMGP7852 IMGP7856

Our first home test was a success…she seems to like it :) Only time will tell if her relaxed response to her new car seat suggests that she is now much more comfortable…but we are keeping our fingers crossed.


{Addendum 9/16/14} It wasn’t long before Miss B showed her true colors and threw her hips into full extension while in the Carrot 3.  I checked with her therapists about the fact that it was reclined and not tilted and whether that may be contributing to her extension.  When they agreed this could be a factor I ordered a Seat Angle Adjustment Wedge for the Carrot 3 out of pocket (figured it would take too long to get coverage and we needed it ASAP) that raised the seat 4″ and created a 20 degree angle and tilt.  This seemed to make a big difference.


Enjoy Beach Therapy July 26, 2014

Posted by adaptedworld in Uncategorized.
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If potential thermoregulation issues can be managed, there are wonderful sensory opportunities at the beach, including but not limited to the warm sand and the calming effect of both the sound of the waves crashing in and a warm breeze against the skin. However, regular wheelchairs and adaptive strollers are not capable of moving easily through sand, making a beach trip challenging for a child who uses a wheelchair. Thankfully, beach wheelchairs with large wide wheels that don’t sink in the sand exist and many beaches have them readily available for wheelchair users. Indeed, The California Coastal Commission site lists beaches that lend wheelchairs.

When such guides aren’t available the internet can be a useful resource for finding out whether beach wheelchairs are available at our destination. We planned a trip with family to Lake Tahoe this summer but the beach wheelchair of our favorite equipment lending program, AbleCloset, was checked out/reserved already. A quick search indicated that Sand Harbor has two beach wheelchairs available for use at that location. A more extensive search revealed that the City of Reno-Parks, Recreation and Community Services rents equipment, including a Hippocampe All-Terrain Wheelchair!

So this year for our trip to Tahoe Miss B’s Grandpa rented and collected this beach wheelchair to make it easier for her to join us. Because it is made for both children and adults to use we put her GoTo Seat and her pool noodle supports in it for a better fit.


We also added her Convaid Rodeo Canopy to it for extra shade


and she was ready to hit the beach!


When she seemed drowsy we propped it on a cooler to recline it


but she preferred strolls along the shore


We could have wheeled her through the waves in the shallow water in this Hippocampe Beach Wheelchair but the water was too cold for her so we stayed in the sand and enjoyed family fun in the sun!



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