Wednesday, September 27, 2017

The Tiny Terrorist: How TSA Keeps You Protected Against Wheelchair Bound Children

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Last week traveled for Noah's adventure trip sponsored by a local organization called Brave Young Hearts.  Noah's adventure was to Morgan's Island Adventure Water Park in San Antonio, Texas.  Noah was also gifted with a day at Seaworld with his little brother Luke.  The first hurdle of course - and the one we most dread when traveling with Noah was the airport.   This time we decided to take our own vehicle and leave it in the airport parking garage.  That turned out to be an excellent decision and way more convenient than attempting to wait on an accessible taxi or get Super Shuttle to coordinate a ride.  We were waiting sometimes hours for a ride home - even after scheduling and pre-paying for ride service when we travel.  And although the price tag was $96, it still was less than half of what we normally have to pay not including tip to coordinate an accessible ride to and from the airport.

Yet, even with the convenience of parking on site, we knew it would still be a challenge with the number of bags it takes to travel with and getting through TSA.  We did certainly underestimate the hassle of TSA this time.  We measured it up against past experiences which were certainly problematic at times, but we still weren't prepared for for what was in store for us on this trip.  I call TSA Cares religiously when we travel, and give them the same speech each time; medically fragile child, traveling with medically necessary needs like liquids and pureed foods and often medications, has spastic quadriplegia cerebral palsy, cannot be transferred out of his wheelchair at TSA check points, etc.  I even get an a TSA attendant call upon arrival and departure confirming my contact with TSA Cares and their acknowledgement of our travel plans.

We have now flown with Noah a total of twelve times.  Each time we travel we always have a unique set of challenges and obstacles.  Sometimes it's the rental car agency who failed to realize we were serious when we said we really need a wheelchair ramp accessible vehicle and no a regular van doesn't work to tie down his wheelchair.  Sometimes our hotel room isn't accessible, sometimes we forgot something Noah needed at home and we're shopping immediately for it when we land, and sometimes it comes in the form of being bullied by TSA. 

Two flights ago TSA demanded Noah be removed and separated from his wheelchair.  I was threatened with arrest if I failed to comply.  They took Noah's three ounce apple juice away from him that he was drinking in order to settle and minimize his sensory gag and vomit reflex.  Once removed, Noah immediately vomited all over me and himself.  An older  gentleman behind us was also removed from his wheelchair and TSA refused to give it back to him despite desperate pleas from his family. TSA refused to check him until they were finished with Noah and the detained him for an hour.  With no real reason to do so other than they could.  I went to change a vomit soaked Noah while he was still in his wheelchair, his daddy briefly running to the restroom to wash his vomit soaked hands.  Chris comes out of the bathroom and asks where Luke is and I say holding onto the back of the wheelchair.  Except I look up and he isn't.  I scream Luke's name.  And nothing.  We're frantic not knowing where he went.  Within seconds Luke calmly marches out of the women's bathroom saying he had to go pee.  And I'm like is this really my life? As I'm trying so hard to care for one child and nearly lose the other at an airport.

I of course came home, immediately filed a complaint, video recordings of Noah's TSA check were reviewed and we were issued a written formal apology with the "well do better next time" verbiage.  Basically an acknowledgement of they did wrong but didn't care much about that fact. 

Although we've had some bad experiences with TSA I still wasn't prepared for what happened on this trip.  Per usual, Chris and I removed our shoes as required by those under the age of 18.  Noah does not travel with shoes, Luke kept his on.  All of our baggage was screened including Noah's medical bag which is clearly marked "medical."  It contains his food pouches - typically six of them to get us by until I can get to the ones that I bag check, 2 apple juice boxes, his medical cup, plastic spoons, topical medications, Motionease, diapers, wipes, and facial towels, antibacterial wipes and gels, and a vomit bag kits.  The other bag carries Noah's Ipad, the camera, my driver's license, keys, antibacterial, changes of clothes for Noah as he soils them quickly and requires multiple changes when traveling, 2 chux, and charging cables or the cell phones.  Luke had a carry on bag with nothing but his clothing.  Everything else was checked baggage. 

TSA always gets edgy as they immediately try to separate Noah from me at the scanner.  I tell them I have to go through the scanner first and then Chris will push the wheelchair through so that one parent is always with him.  They start to always get confrontational with me because I refuse to be separated from Noah even briefly.  Noah is so involved that it only takes a second for him to aspirate if you don't know how to handle the situation.  I'm ushered over to a place where they swab down and pat down every piece of Noah's wheelchair, which makes him uneasy as he can't handle strangers too close to him.  I warn them he'll throw up if they don't give him space.  They swab his hands both of which I have to lift up for them because he cannot voluntarily raise his arms.  This time Noah tests positive for explosives.  This is the fourth time he has tested positive for explosives in all the times we have flown.  All other times Noah 's pat down of his wheelchair suffices and we're let through. 

However, this time a supervisor determines that because Noah tested positive for explosives that it is mandatory that I undergo a full body search since I was the last parent to touch his wheelchair.  Only Noah's hand tested positive not the wheelchair.  I'm given no other alternative.  I am asked if I'd like a private room for what they are re going to do and I decline as they tell me it would require me being separated from Noah and the rest of my family.  I'm ordered to spread my legs and hold out my arms.  I'm instructed to lift my shirt and allow the TSA agent to go underneath and between both breasts twice.  Two hands run the length of the insides of both legs, while an open hand rested on my inside of my crotch and wasn't at all brief.  Part of me is in disbelief this is happening all because I have a child in a wheelchair, I feel numb, helpless and slightly embarrassed that I'm being required and subjected to this invasive search. The TSA agent is unsatisfied and asks me to unbutton my pants and pull them down hip level exposing the top portion of my panties and then combs through my hair, then my neck and down my back, I feel two thumbs down the center of my bottom spreading both sides apart, with hands moving down the front of my underwear while the TSA agent checks  me once more from head to toe as I'm ordered to spread my legs wider and keep my palms facing upwards.  It wasn't so much the modesty part that was difficult, but the awkwardness and uncomfortability of having to consent to having a stranger touch you in this vulnerable way.  We are forced to give up our basic freedoms and being forced to subject to this process.  I can tell you that what happened to me was far beyond a basic search that I was intentionally touched in a way that I shouldn't have been all disguised in the name of "security."

My full body search isn't enough to satisfy TSA, however.  They then indicate that Noah testing positive for explosives would then further require a separate swab of everything in our bags.  Everything was dumped out in trays.  The camera was removed from it's case, Noah's sterilized medical cups and spoons each dumped out voiding them from being sanitary, clean and ready for use, Noah's baby food pouches were opened and tested making them unusable. IPads separated and given to different TSA agents.  All of our belongings spread out to no less than seven agents while we stand there stunned.  Noah's car seat was tested for explosives not once but twice even though the first set of swabs did not come up positive.  Luke looking on for reassurance that everything was going to be okay as he sensed our distress.  Noah's gagging growing stronger indicating he couldn't hold off his vomiting much longer.   We're finally released and cleared 48 minutes later.  Other passengers looking on at us throughout the ordeal as they went through their own TSA checks I'm sure wondering what all the fuss was about and why so many agents were devoting so much effort to this tiny terrorist in a wheelchair and harassing his family. 

TSA still unsatisfied requires an escort attendant to our gate, as if we are still guilty of an offense.  We make it to pre-boarding ontime.  I am still stunned and struggling to absorb what I just endured.  I just want the TSA agent to go away.  He asks if I had any feedback for their services.  I think my response was "are you kidding me?"  I lacked the words, they were there hot and heavy under my tongue but my voice squished out of me like a child who had been punished and sent to sit in a corner in silence.  I didn't think I could have a conversation without breaking down in frustrated tears.   The TSA agent was extremely young and sensed the anger and sadness in my body language and retreated. 

I called my mom, the only person on this earth that knows me well enough to feel my troubles in my voice.  It's comforting to talk to her about it before I quickly board the plane and she understands that I'd do anything for Noah - even subject myself to a full body search in public.

I tried to put it out of my mind the entire flight, but my mind just kept dwelling on it - as if I could somehow have changed it or influenced that outcome what occurred.  I was heated because I felt the process of TSA to be so incredibly unfair.  A real terrorist has a better chance of getting past TSA than a child in a wheelchair does.  Only certain individuals have to remove shoes.  One can even pay $85 per person for a five year "pass" or what is referred to as a TSA PreCheck, to get around having to take your shoes off, remove your laptop or be subjected to a liquids check.  That seems like a small price to pay for a real terrorist to get around any invasive TSA check - heck there is no swabbing even necessary of your hands for an able bodied person.  But Noah who can't even hold an object in his hands, who can't sit, walk, talk, crawl or self feed could be a danger to those flying and TSA thinks that you need to be protected against families like ours.
I put it out of my mind the best I could for the remainder of the trip, I didn't want it to overshadow the incredible fun and joy that we all were gifted with experiencing.  I had to build memories with my children because at the end of it, that's all we'll have left and can take with us in this life.   I thought perhaps we had been through the worst of it.  But that wasn't the case.

Upon getting ready to come home Noah's hands were once again swabbed.  He did not test positive this time for explosives.  His wheelchair was also swabbed and patted down twice, it also came up negative for explosives.  Chris gets pulled aside and told that Noah's pureed baby food is flagged and that if we want to be able to take it the plane with us even though it is medically required that I have to be subjected to another full body search.  Chris sees the tears well up in my eyes and gruffly says no to the attendant and says if there is a full body check required then they'll have to do it to him.  I feel a sense of relief, but just as sad for Chris as I was for myself.   I tell the TSA agent that we've never had to do full body searches because of Noah's food before or because he's tested positive for explosives in the past, and her response was short and curt and said these have always been the rules even though I know that isn't the case. And my suspicions were correct as I came home to read an article about TSA's new invasive full body searches.

Chris's crotch was simply grazed and a full open and resting hand wasn't required as it was for me.  They are quicker and less through with him.  They seem uninterested and slightly less interested in him since he volunteered and demanded to take my place.  Chris stoically handles the situation and makes eye contact with me to reassure me that we'll get through all of this together - Noah's team.  You can't break us no matter what you put us through.

I think the worst of it is over.  I'm relieved and anxious to get as far away from TSA that I can.  The plane was running ten minutes late and still unboarding previous passengers from another flight when we got to the gate.  A heavy-set lady in a wheelchair waits as if she's stalking the gate for first signs of boarding.  The Southwest gate attendants look to us as they recognize our needs deserve first priority and attention.  We're allowed to board first as we always are, so that we can install Noah's special needs car seat and then transfer him from the wheelchair onto the plane.  While we try to do it quickly it does take us a few minutes.  The plane isn't full.  40 seats exactly remained unassigned and empty on the flight.  Noah has to sit against the window per regulations with his car seat, his dad next to him.  The medical bag next to Chris.  Luke and I are a row across leaving the end seat isle open on both sides of us. 

The lady in the wheelchair follows behind us and is visibly angry.  She blurts loudly out of her mouth "well I guess I'm screwed with not getting a front row seat."  She then briefly pauses and looks over at Noah and proceeds to say ""oh it's because we have a retard on the plane." Do to her size she requires two seats and there is only one on each side of us.

I wish I could tell you that each time someone says something like this that I could be rock solid like stone.  But, I'm not.  I wound easily even though I hide it.  Her words feel like a dozen swords hitting my chest.  I well up with tears out of a combination of all the feelings I'm experiencing.  While the anger rises to a place where I want to tell her just how incredible that miracle child is that just boarded the plane, I can tell by her demeanor and loud and obnoxious behavior that me uttering even one word to her would have caused a massive argument and fight that would have likely gotten one or both of us kicked off that plane.  I sit down in silence.  Stewing in pain and holding it all in.  I focus on how pretty the night flight is and all the lights below us as we fly.  I kept thinking and wishing and quietly asking God for just an ounce of comfort to get me through it.  I contemplated in my head giving this lady a piece of my mind when we landed.  I may have even followed through except we were rushed rather quickly off the plane since the Southwest plane before us had a brace for impact landing crisis and emergency vehicles were everywhere around us.  I just wanted to get Noah off the plane and my focus quickly shifted from that verbally uttered sentence of cruelty onto Noah's well-being and cleaning him from the vomit that always happens upon landing.

We were on the ground and home and we had endured and overcome the hard parts.  That's really what we have to focus on is that we don't let the hard times overshadow all the good, incredible and beautiful moments.

For all of you special needs families that have been faced with similar TSA experiences or sadly will have to undergo something like this in the future all because you have a child in a wheelchair who is medically fragile, my heart goes out to you.  I understand.  And I know how unfair this all is.  I wish I could change it for me and for you.  I dream of things being easier for us, I wish that having a child with special needs didn't always feel like there were consequences attached to it.   I only see TSA's practices getting worse, and all the parents who reached out to me when I shared my most recent experience - I'm just so sorry.  This is so wrong and my heart aches for all of us.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Monday, September 11, 2017

You Couldn't Have Known

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You couldn't have known the multitude of challenges I faced in that single day; entire family Medicaid renewal forms, SSI disability verification forms, a letter saying that something negative was reported on our credit report and endless emails regarding my son's affairs.

You couldn't have known that I was running on less than three hours sleep while tending to Noah's various difficulties in the night and how exhausted I was regardless of the numerous cups of coffee that I had.

You couldn't have known that I received a phone call from Noah's attorney that day confirming that he received my first legal payment in order to sue Medicaid for continuing to deny my son his medical needs regardless of an Administrative Law Judge ordering them to reverse their denials, and the State continuing not to yield to those orders but instead file Exceptions to initial Decisions to void any favorable ruling on Noah's behalf.

You couldn't have known that our account had been compromised for the fourth time in six months, which left us temporarily without a positive balance in our bank account and without debit cards until new ones could be ordered.  And that we're still trying to rebuild our credit after bankruptcy, leaving us dependent on our bank account.

You couldn't have known that I spent a large portion of the day evaluating my parenting performance to two differently able bodied yet equally beautiful children. 

You couldn't have known that Noah's nutritional order came incomplete with a note that stated his supplies were on backorder for an undetermined about of time.

You couldn't have known that I was kicking myself for not buying groceries early in the week before our account was breached leaving us without adequate dinner options.

You couldn't have known that I was heavy-hearted about having to use the cash that I received as a result of selling things around the house to help Noah with his out of pocket medical and equipment costs and needs for dinner that night.
You couldn't have known that I was frustrated that the only four disabled parking spots were full and two of the cars didn't have handicapped plates or a placard and were parked illegally, leaving me to having to take up two regular parking spaces in order to get Noah out of the van. 

You couldn't have known that awkward feeling when we entered the restaurant and the wait staff struggled to find a place to seat us for dinner as we watched several other parties be seated before us while we patiently waited for an option.

You couldn't have known how we frequently feel invisible and how we are merely an inconvenience to everyone.

You couldn't have known how terrible I felt when the only table option there was required your entire large party to rearrange yourselves and fold down the leaflet of your table so that Noah wouldn't swing and hit his arms at dinner while he was sandwiched between our two tables.

You couldn't have known how I was dwelling on the fact that our seating arrangement impacted you in some way and how sad I felt because nothing about our existence feels normal.

You couldn't have known that I took notice of one of the children at your table - a little girl so tiny and sweet who watched so lovingly as Noah's daddy fed him.  And I thought to myself that her loving and tender expressions meant that she was destined to do incredible things in her lifetime with the kindness she was born with. 

You couldn't have known that my hamburger was the first meal I had eaten that day and that I was so incredibly hungry that we decided to splurge on a $7 appetizer even though we thought twice about it.

You couldn't have known how happy Noah was with his seating position and being able to have a large big screen TV in front of him so that he could watch a football game at dinner. 

You couldn't have known that I admired your large dinner party and convinced myself that all of you were this incredibly close family that would always be there for each other and how I wished we had that. 

You couldn't have known how important it was for me to thank you for being accommodating and kind and not overly upset that you had to arrange your table and move it to make room for Noah when you got up to leave.  And how you put my soul at ease when you told me no thanks was necessary and that you thought we were great parents.

You couldn't have known that I cried when the waitress came over to our table after you all left to tell us that you had paid for our dinner and didn't want us to know until you had left. 

You couldn't have known that you were the only person who has ever done that for us and how incredibly touched we were that someone cared about us in this beautiful way. 

You couldn't have known that you made us feel loved and cared about even though we were strangers, and that in so many ways you were an answer to our prayers after a long and hard day.

You couldn't have known the difference that you made. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.