September 30, 2015

Sand Traps


It is the last day of September and I think I just now finally captured the final few surviving grains of sand that have been ever haunting my floors since our beach trip at the end of August.

Funny how there is still a beach, because I was pretty sure we brought it all home with us.

Sand in their fingers, sand in their toes, sand in their cracks and sand up their nose.



Our last vacation of the season was so much fun.  The older kids have grown sufficient enough brain to manage themselves at the beach.  They don't go out too far if the current is strong.  If a wave topples them upside down they are of sound mind to know how to stand back up.  They had an independent blast and enjoyed having grandma join us.








Eliza, on the other hand, would be carried off to western Africa if we let her.


Bridger has made great progress from his early years of vomiting if a grain of sand touched him.  Sand = beach, which consequently = lots of vomit as I would try to keep seaside family vacations happening.  Now he tolerates sand everywhere and his signature sand trail he makes bum scooting from our umbrella to the surf leaves sand trapped in every possible crack he has.


Have I mentioned how much we love our beach wheelchair?!



The one who was doubting the fun in this whole beach thing was Ty.  Watching him walk on sand made us all double over in laughter.  He made it look challenging, like each step he was placing a precarious paw on a balance beam.  It was quite a sight watching the big tough service dog tiptoeing through the sand.


He adjusted to it after the second day and found his dutiful place playing with Bridger. While Alan was playing in the waves with the other kids, Bridger was playing in the safety of the shade building sand hills that Ty would promptly destroy on command -- repeated over and over.  Then Bridger would bury something and Ty would dig to uncover it -- repeated over and over.







The sensory elements each outing become overwhelming to Bridger after an hour so he assumes his signature position with me holding him in my beach chair, head on a towel wedged into my elbow, cool damp washcloth over his eyes, legs propped on the armrest and me pressing my finger into his ear to block out all auditory input.  And there I sit for an hour while he shuts down and my arm sends shockwaves of burning muscle up my body holding that precarious position with an 80 pound weight.


It is bliss.  Except for that dead arm part.

The fun doesn't end when the sun goes down.  Night swimming is one of the kids favorite things to do and I love that it acts as a preliminary filter to get the sand out of the cracks.



In the evenings, after we were all de-sanded for the night, we get sandy one more time and go hunt for crabs by flashlight.  Besides the sand that we carried into our condo each night, the other half of the beach went up Ty's nose.  We took off his work vest after Bridger was in bed and discovered that Ty is an expert crab hunter!  Nevermind the annoyance of snorting up the sand, he thought this was the best job ever!  Every hair of his tail was on point as he chased down the trails of the crabs and found every one. 








As all good things must come to an end, this was our farewell to summer.  We had our annual ice cream for dinner to bid adieu to flip flops, shorts, sunscreen and lazy days until next year.





September 15, 2015

A Place For Us


Last weekend marked the grand farewell of Pool Season.

Or so I heard.

Pool Season didn't happen this summer for us this year.  I just couldn't summon the strength for it. With Bridger being a floppy 83 pounds now, every time I thought about taking him to the pool my body just started twitching in pain and recoiled at the very thought of it.

83 pounds is a large number.  It might not seem that large when we think of the weight bench.  But when lifting typical weights you lay yourself down perfectly positioned and supported on the bench, or from a dead lift you hold perfect form watching yourself in the mirror as you focus on lifting with your legs and not with your back.  Not with Special. It is an awkward, formless one handed grasp as your lean with a leg half cocked in the air to pick the child up. It is a crouched with a pendulum momentum throwing heave to achieve the next position as an unflattering grunt comes out of your throat.

It is not pretty, and it hurts.  Especially when wet with an extra 20 pounds of water weight added to the ginormous man-sized swim diaper.

Last year I gave it a go a handful of times.  Hauling his wet and slippery body in and out of the pool and managing his limbs in an alternative state of floppy then--unexpectedly spastic--then back to floppy which guarantees two things 1) I will, at some point, get a spastic hard fist to the eye socket from him that renders me blind, 2) I will, at some point, flash something at someone that should always remain covered.  Wearing a swimsuit and physically managing Bridger for pool time does not a pretty combination make.

We cool off elsewhere though.  We love the beach with Alan's favorite piece of equipment, Bridger's beach wheelchair.  We love going to a local waterpark where the beach wheelchair is of huge benefit too.  I also am a huge HUGE fan of splash pads.  Been to every little one in the surrounding area that there is.  We throw Bridger in his old wheelchair and he giddily wheels himself around the squirters with his sibs.  It does give me some bit of worry that the same child who is at risk for aspiration is the same one that finds great delight in taking a squirter at point blank range right up the schnoz.







Everyone loves splash pads -- with the exception of Ty.  That ranks right up there with walking over subway grates as his top two things that make him ridiculously nervous.  So he just sits and plays the dutiful lifeguard.



BUT, my #1 favorite summer cool off spot is a place made for us.


It is called Our Special Harbor and it pure joy connected to a hose.


Our Special Harbor is a Sprayground and is a fully accessible park inspired by a little boy with special needs who loved the water who passed away several years ago.  In his honor, his parents put together a memorial fund to bring joy to other families with children with special needs.  Our Special Harbor is one of their initiatives that breaks down barriers, encourages interaction and provides families and children of all abilities a place to play and have fun together.   The Joey Pizzano Memorial Fund "recognizes the different challenges that families raising children with special needs face and understand how important it is for families to feel comfortable in public settings where they can enjoy new experiences together."  What an amazing organization!  Even though we bring our own wheels, Our Special Harbor even provides pediatric water wheelchairs for those that need them!

It is just under an hour away, but worth the pilgrimage.  Especially when it is down the street from the Krispy Kreme doughnut store.  We always make a day of it with having our sprayground fun and then capping it off watching the doughnuts roll down the glazing line and filling our bellies.

It was so fun to actually sit {YES SIT!} at the "pool" and let my herd run and wheel around in absolute joy.  It is a riot to watch them.  









Apparently some others there thought the same thing watching us as I was approached for permission to photograph my family.  It turns out representatives from the foundation were there and wanted to feature our family for their website.  I have always wanted to be featured on a website wearing my swimsuit {insert sarcastic grimace], so I consented. Actually, I didn't even give it second thought because I am so grateful to the JPMF for creating such an amazing place that gives my family an entire day's worth of summer fun and happy memories for free!


The list of places that we cannot visit continues to grow, which makes me more and more grateful for the places we can.  Top on that list is Our Special Harbor.  It definitely is a place for our family.  I think my guy feels at home here, don't you?



September 03, 2015

The Guessing Game



"What to Expect the First Year," and it's sequel "What to Expect in Toddler Years" are great books -- except when you live with a Side of Special.

The handouts that the doctors give you at the annual wellness checkups for your child that list current and and anticipated developmental milestones are helpful -- unless you are there with your special child, in which case not a single bullet point on that handout applies.

There is not an instruction manual for Special.

There is not an annual handout from the doctor listing expected behaviors, advancements and growth.

There is not a handbook, no "What to Expect" series.

There is nothing, nada, zip.

Life with a Side of Special is a crapshoot.

It makes our life a guessing game.

What year will be the year that my back will actually start breaking in efforts to lift Bridger in the tub and we will need to begin bathroom modifications for a roll-in shower?

At what rate will he grow which will necessitate upsizing the wheelchair which might mean upsizing my van -- but the type of van is completely variable depending on what his developing skills are that determines what type of wheelchair?

Do we need to have $10,000 for our out of pocket expenses in January -- or might we be able to make it until March or April before forking out our in-network max for the year?

How many thousands (or tens of thousands) do we need to save for Bridger's out-of-network, out-of-pocket expenses this year?

How long can we drive in the car before epic screaming meltdowns begin?  If we invest in $100 of new movies or toys would that buy us an extra 2 hours of driving time?

Is Bridger capable of flipping over the railing yet should he pull himself up to stand?  Will he be capable of pulling to stand next month? Do I dare take my eyes off him for a minute in the house just in case he is? What about his bed railings? Do I launch the 6 month process of pursuing a new higher bed just in case?

What does the field look like that the softball game is on this week? {Pushing a stroller with an 83 pounder is much different than pushing a baby stroller.}  Does it have a smooth path that I can maneuver his standard pushchair on that has a more protective canopy to keep Bridger from seizing in the sun or is there not a good enough path for the pushchair therefore I bring the offroad stroller that allows me to at least get to the field but doesn't provide as good of sun protection and put us at risk for seizing?

What commuter car do we get next for Alan? It has to a hybrid.  It has to be able to fit Bridger's pushchair.  How much do I anticipate Bridger will grow during the course of the 6-7 years that we will have Alan's next car? What are the dimensions of the various pushchairs that would accommodate my anticipated growth and will they fit in the options of hybrid commuter cars?

These are just a few questions included in My Special Guessing Game of the past 6 months.

There is no way to predict.  We make guesses based on our history and our experience of the past whopping eight years -- but 8 years hardly qualifies you to be a successful in The Guessing Game.

Sometimes we guess wrong.

We knew we needed a large van for a wheelchair.  We thought we would save $40,000 by buying a used van and modifying it ourselves.  It worked, sort-of.  The big beasty van was a traveler's dream for the other children with the cushy captains chairs and 32" hdtv.  But as big as it was, it wasn't big enough to accommodate the upsize of wheelchair.  We also didn't forecast that Bridger would have a tremendous rate of growth over the past year. The kiddo who was not even on the charts for the first several years of his life is now projected to be 6'4".  Hauling that big frame in and out of his bed/car/wheelchair/shower chair will be an exciting show to watch in the coming years.

Just to get Bridger into the car was a physically exhausting feat.  We would raise him up in the lift, but then once inside we would have to lift him out of his chair and forward through the narrow aisle to transfer him into a seat since there was not room to negotiate the tie downs for the wheelchair.  That lifting transfer had to be performed while crouched over 45 degrees due to the ceiling height, which is excruciating on the back.  We then had to move the 40 pound wheelchair over to flip down the jump seat to make seating accommodations for everyone, and move the carseat back into the jumpseat.  The whole process was reversed to exit the car.  This done several times at a pop if we had more than one place we had to go and made nearly impossible if Bridger wasn't agreeable at the moment.  Even after one round of this you are in a lathered sweat.  With my compromised back, I was so grateful when the kids or Alan were there to help (although the fear of compromising their backs is always present).  They were a well-oiled machine entering and exiting the van.

















We are writing the our own special handbook called "Trial and Error".

Our van trial proved an error.  It is tough to swallow the errors.  The trials represent hours and hours of studying, researching, money spent and a hope of making life a fraction of a percent easier.  Realizing the error is swallowing all of that and sadly realizing that you just don't know what to do in this journey because there isn't any book, manual, form or understanding that anyone can provide that will make views of even the near future anything clearer than mud.

The purpose of our trip across country this summer was to have fun, drop Lance off at Scout Camp with his uncle, go on our All Girls Getaway -- but it was also to sell our van to a buyer out west.


The kids and I took our final photo along side our big black beast, and then we watched it drive off into the mountains and we flew home.


I cried.

Who cries at watching a Ford E250 Super Duty high top extended van drive away?

Driving away was my attempts to make the right moves for our family, my efforts to try to guess all of the unknowns accurately, my hope to make life a little easier that just didn't.

With the hundreds of unknowns that we have successfully navigated, anticipated and provided for, this one we didn't quite guess right.

It was a fabulously fun two years with the van - traveling in luxurious conditions in two cross country road trips, a beach trip and numerous weekend trips throughout the east.

But we said good-bye.

A newer, larger, taller, longer, less luxurious (consequently more floor space), lift with bolt in for the chair (instead of tie downs) van is coming down the pike towards us.

It will accommodate our current and future needs.

At least that is what I am guessing.