Chronicles of California: The Arrival

THE ARRIVALKohl and the gang have embarked on a journey.  On Friday, May 29th, we arrived to California, a land free of gluten and trans fats.  A land where Team Chrestman will surely stick out like a sore thumb.  A land in which, we hope, Kohl will reach new highs with respect to his development.

Neuroplasticity and The Anat Baniel Method

One of the things we hung our hat on when Kohl was born with brain damage is the concept of neuroplasticity.  That essentially means that a damaged brain has the capacity to use areas that have not been damaged to establish new neural pathways to accomplish the same tasks that the damaged portions would have accomplished.  The most common example of neuroplasticity in action is when someone has a stroke that damages one half of the brain and the other half “compensates” by taking on the tasks that the damaged portion would have done.

We have learned that not only is a child’s brain particularly “plastic,” but kids like Kohl who have “global” brain damage that is not restricted to just one part of the brain have done some pretty miraculous things through the concept of neuroplasticity.  Another cause for optimism is that neuroscience is only beginning to understand how the brain’s plasticity can be used to accomplish things.

One method that uses the concept of neuroplasticity in assisting children with special needs is the Anat Baniel Method.  Anat Baniel is a clinical psychologist who began working with special needs children about 35 years ago using the concept of neuroplasticity to come up with her own system in helping kids like Kohl develop.  The results she has achieved have been pretty amazing, and bringing Kohl to see her along with her trained practitioners at her center in San Rafael, California is something we have been wanting to do for over a year.

And that, friends, is what brings us to California.  We are still very ignorant of how this works, but we are here for almost two weeks of therapy, or what Anat Baniel calls “lessons” along with a workshop designed to give parents a more in depth understanding of the method and how we can apply its principles to Kohl.  We will have more details in further posts.

For now, however, there are a few other random things worthy of mention.

Traveling with kids is difficult.  Traveling with special needs kids is even more difficult.

Traveling across the country with multiple children is difficult enough.  Doing so when one of those children has complex medical needs is even more difficult.  There was a lot of planning involved and the logistical muscle movements were complicated.  Kohl’s mom’s tendency to overthink and stress over the most minute of details coupled with his dad’s tendency to under-think and overlook all details resulted in a balanced approach to making this thing happen.  The only headaches involved in the planning stages were dad’s smart ass comments to mom about conducting a “SWOT Analysis” of what else to pack or making snarky suggestions about maybe creating another list about a list on the list covering which list that lists the things to pack.  It was hilarious, but I guess you just had to be there.

When the packing was finally done, the next thing to stress out over was the plane ride.

Kohl has a G-tube and gets all of his nutrition through a pump.  He cannot sit up unassisted and requires a special Go To Seat to sit up without falling over.  He has also shown a disturbing trend recently of shitting himself in public which usually results in putrid odors, impulsive decisions to just throw away clothes covered in poop and general foolishness.  The thought of he or Amelia doing that in a contained environment like an airplane was terrifying.

But we’re pleased to report that the trip really could not have gone more smoothly.

We thought I would there would be a verbal and/or physical altercation with the TSA regarding the transport of Kohl’s medicine and food.  Instead, the TSA agents were courteous and actually helpful.

We thought that getting on and off the plane with our bevy of gear would be a colossal pain in the ass.  Instead, the employees at United probably couldn’t have been more helpful.

We thought there would be sneers and aggravated stares from our fellow passengers at our screaming children and annoying questions about what is wrong with Kohl.  Instead, the little people were very well behaved and even had fun on the plane.

Cheers to a smooth commute here to San Rafael.

Kohl’s dad looks ridiculously good driving a minivan.

The minivan is something that Team Chrestman, up to this point, has been able to avoid.  But with two of these little turds and all of their accompanying gear, it was pretty much a necessity.  Besides, we put the swagger in swagger wagon.

SWAG

We have been cruising the streets of San Francisco and San Rafael on these dubs listening to the likes of Snoop Dogg, Nate Dogg and Dr. Dre.  That is swagger, folks.  Plain and simple.

Witnessing a miracle

As if the smooth travel over here were not miraculous enough, we witnessed another little treat in the charming town of Sausalito, California.  By way of background, my sister Allison passed away back in January.  A few weeks ago, we were at a ceremony dedicating a bench to her honor at my high school alma mater.  One of Allison’s best friends – Patricia – was asked to say a few words at the ceremony.  She told everyone about how she recently was at the grocery store driving around a packed parking lot and called on Allison to find her a parking spot.  Apparently her request was granted as Allison quickly found Patricia a spot.

Well, Team Chrestman was cruising around downtown Sausalito on a beautiful Saturday afternoon attempting, unsuccessfully, to find parking.  After about 15 minutes or so, Kohl’s dad pleaded – half joking – with Allison to help a brother out.  Not 30 seconds later, someone pulled out of a spot, and we swooped in.  Thanks, Eye-shy!

You can call it a coincidence, but I’m going to go with miracle.  And we hope that is one of many miracles we will see during our stay.

 



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10 Musings from a NOLA Dad

 

NOLA-Dad-featured

There is a group of wonderful moms in New Orleans that run a blog, aptly called The New Orleans Moms Blog.  The blog is very popular here in New Orleans, and these ladies are pros.

So I was flattered when they agreed to allow me to use some of their valuable bandwidth on the interwebs to flap my gums about being a NOLA Dad.  Please check out their site and my post, Ten Musings from a NOLA Dad, when you get a chance.

Thanks, NOLA Moms!



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Sometimes You Gotta Say F&%k It

Wednesday morning sucked royally.  When things suck royally, I find the only solution is to find the comedy in it all.

Having a special needs critter like Kohl adds a lot of additional duties to our morning and evening routines like getting his bevy of medicines ready and packing all of the supplies for his gastric tube feedings which is how Kohl eats.

At night, we hook him up to a feeding pump that delivers the majority of his calories via slow drip as seen here:

This usually works out great as long as we don’t screw it up.  On Tuesday night, I screwed it up.

There is a plastic clamp that prevents the tube from leaking when not in use as seen here:

Forgetting to unclamp that pesky little piece results in disaster. There is usually an alarm that goes off when this happens but since someone was clearly trying to mess with us (I’m looking at you, Allison), the pump did not go off.

Here is a timeline of Wednesday morning’s events:

5:03 am – Mom wakes up Dad to inform him that the plastic clamp on Kohl’s feeding pump was left clamped resulting in Kohl’s entire feed going all over his bed instead of inside Kohl’s stomach

5:07 am – Mom and Dad feel terrible that their negligence has resulted in Kohl sleeping in a puddle of his own formula.  In their pre-dawn haze, they conclude that he is fast asleep right now and 20 more minutes of sleeping in a Pediasure pool will do him no harm.

5:47 am – Dad wakes up sleeping beauty and bathes him. While de-robing Kohl, Dad notes that not only is there formula all over his bed, Kohl has also chosen to shit all over the place as well.  Touché, Kohl, touché

6:03 am – Bath commences and Dad scrubs off all the dried up formula caked on his skin as well as some poop residue

6:18 am – Mom gets Kohl dressed as Dad proceeds to strip the bed and clean the mattress.

6:32 am – Amelia wakes up, grinning from ear-to-ear, oblivious to the tomfoolery that has taken place

6:45 am – Kohl misses the bus because his parents are dip shits

6:55 am – as Dad attacks the mattress with some Resolve and a rag, Kohl’s bed frame comes crashing down.

6:57 am – Dad throws the rag into the air while muttering “fuck my life.”  He proceeds to calm down and find the humor in all this, while also noting the symbolism of a thrown rag in the air being akin to throwing in the towel

This is but a snapshot into how mornings sometimes go at Chateau du Chrestman.

Sometimes, you just gotta say fuck it.



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