In my lifetime I have been witness to a myriad of
experiences from the indescribably blissful to pure evil. Both have touched my life personally. The idleness of asking, “why me?” has never
entered my mind, no not even during the darkest days. I have always had the thought, “If I am here
and this is happening I am either perfectly able to deal with what has been
tossed my way or when it is all said and done I will have learned what I needed
to learn to be perfectly able to deal with what has been tossed my way.” The wasting of time and precious grey matter
sitting on the virtual pity pot is the ultimate “sh%* or get off” moment! That
time and grey matter could be put to use in actually DOING something toward
finding solutions, figuring out how this happened so it will not be repeated
again, or supporting my family. Something
productive! Anything, really! I do tend
to be one who will ponder matters more like a seeker of solutions, lessons, or
betterment in general.
When my son was diagnosed with autism in 2009 it was the end
of a long journey toward his diagnosis.
It was also in the beginning of a very long journey of rebuilding our
lives after the single greatest evil had shaken the very foundation of our
lives. When I noticed my brilliant son
simply STOP progressing, no regression, just no more forward progress, as his
mother and as a clinician, I began ringing bells, whistles, knocking on doors,
asking questions. This was the beginning
of my new life of fighting for my son. I
knew early intervention, regardless of what was happening with him, was his
best hope for becoming his best self.
All I want and all I will ever want for my children is for them to be
safe, whole, well, and the best possible version of who they are.
At times I feel like a prize fighter where my son is
concerned (both my children for very different reasons, if I were being
completely honest). I have fought for
tests, for therapy, for insurance coverage, for tools, for technology, for
understanding, and the greatest battle I have fought is sheer ignorance. My son has autism. That is not who he is. My son is also brilliant. He has dozens of books stored in his brain
and can read almost anything anyone puts in front of him. He doesn't always understand what he has
read, maybe. The great divide in my
son’s sweet head, he loves words. He
knows exactly what he is thinking and feeling.
He knows but he just cannot get those words he loves so much to come out
in an order to have the rest of us understand always. I had a patient years ago who had a stroke
and he used to say “my mind is good, but I can’t get what I can’t say”. That is my Jordan’s great divide, “his mind
is good, but he can’t get what he can’t say!” That is a part of my silly, sweet, crunchy
food eating, snuggle bunny of a boy!
We have had the most amazing people who have helped guide us
down this path. They've helped me not
kill my son by bumping against parts of this bumpy road with no map and no
guide. Teachers who are now dear friends
and allies, therapists who have gone above and far beyond their job description,
and family the genetically linked and un-linked variety have all been the most
amazing supportive system a girl and her boy could ask for. Through patience, guidance, brawling,
battling, suggestions of friends, strangers, books, and most times against the
comfort of my son these people and I have assisted Jordan in progress I didn't dare dream was possible in the beginning.
He has gone to summer camp. He
has gone to a Thunder game. Now, we will
tackle another first: air travel.
We are going to board a plane and fly to visit “the
cousins”. I am hopeful the grownups they live with will be there as well, but
this is not Jordan’s goal. Don’t get me
wrong, he loves his aunt and uncle. He,
however, is “going to see the cousins”!
As a mom with a child with special needs who is a very
visual learner, I began the Google quest of finding videos and/or pictures of
people boarding airplanes to show Jordan.
Beginning months ago with these preparations allows us time to be best
prepared for the “rules” and hopefully make for a smooth travel day. I began enlisting the help of the army of
support we have. Can you help me get
these headphones for the trip? Yes! Can
you help me prepare for combat with any and every one in my path between the
OKC airport and Salt Lake City’s airport? YES!!
As Google master I came across a video by Southwest Airlines (I will
plug them as much as possible and you will see why soon! NO! I don’t work for
them and NO! I am not a paid spokeswoman for them). This video was a
promotional video for a program called “Wings for Autism” (http://www.flymanchester.com/news/2012/11/mht-wings-autism-video). I watched and thought “YES!!!! A practice run
would be ideal! I wonder who I should ask……?”
When Jordan went to speech the next day I told his ST about this. I work for Mercy and Jordan goes to Mercy
outpatient therapy 2 times a week. I was
thinking "here is a program I know a lot of kids could benefit from not just
Jordan. I would imagine there are many
folks considering going but are too hesitant to try." When I mentioned this to his AMAZING ST, Amy,
she ran with it! She contacted Southwest
Airlines and in about a month had everything (EVERYTHING) arranged! We were booked and scheduled for some type of
practice. It took a bit of doing but we
met for Jordan’s regular appointment at the airport: we arrive at the point!
We met a man from Southwest Airlines at the ticket counter,
Greg Groves. He had placed a
“reservation” for me, my son, and Amy. I
put our reservation number in the computer exactly like I will the day we are
flying. They printed actual “boarding
passes”. Jordan was able to pick out
his. We then met “Greg and Kim” from TSA. They explained the security portion of this
practice drill. Greg’s child has Down
syndrome and is the “TSA child ADA specialist”.
They took us to the line and told Jordan he would have to wait for a bit
in the line and we did but they helped us get through a bit quicker. They explained that he was doing very well,
waiting patiently in line and then said, “WE UNDERSTAND HOW IT IS SOMETIMES……”
and proceeded to tell me that if the day we are traveling he has a more
difficult time, or he is having a bad day, or if I am overwhelmed to please
call them and they can ensure we are checked through security in a different area
in a different way. Checked through and
ensured we are not a safety risk but assisted in any way needed. Amy dutifully followed behind, camera in
hand, clicking away for Jordan’s social story.
“You will put your items into a gray bin” followed by a picture of
Jordan putting his coat into a gray bin at the airport! “You will go through
the x-ray machine.” Followed by? CLICK! Jordan going through the x-ray machine!
You understand. TSA and Southwest then
met with us and took us to a window. TSA
went over basic safety issues and discussed worst case scenario preparations
with us. They had great ideas and
suggestions! Greg from Southwest began
discussing Jordan’s flight and ear popping preparations. We talked about my son’s love of
technological gadgets, they gave him baseball-like cards for the TSA dogs which weren't there that day but may be the day we travel. We showed Jordan the planes out the
windows. They talked with him about the
way the luggage was loaded on the plane and we watched a plane land. After everyone on that plane had disembarked,
we were able to go down the tunnel and cross over into the plane. This was the area where I was afraid we would
have trouble. Jordan was excited to
go. He held my hand very tightly but
moved quickly. He got to the actual
“step on the plane” area, which was where I figured he would struggle a bit. He
held tightly to me and moved slowly but was able to get on the plane with no
trouble. We sat in a seat and fastened
his seat belt. He looked out the window. He was able to see the bathroom. Because he was prepared he was informing
everyone, including me, that “Jordan is NOT flying today”. We got off the plane and went back to the
terminal. TSA took us all “down the
ramp” and outside where he could hear and smell the plane outside. It sounded a lot like what the cabin would
sound like when we will fly.
They escorted us back to the ticket counter and asked if we
had any other questions or if there was anything else we would like to
practice. They gave us cards and the
guys told me “we will be here the day you are scheduled to fly. Let someone know to come get us when you get
here. We will make sure we do everything
we can to help it go smoothly that day” Greg from Southwest said “hey, I
noticed your itinerary says you’re flying through Las Vegas” I said, “Yes….we
are.” “That place is so broken up and it’s got to be the most sensory
unfriendly airport in the world. It’s
all spread out and there is a casino right in the middle of that place.” “Yes,
I know. That was where our flight was
taking us so…” “If I can, would you be OK with changing flights?” “Well, we are
traveling there with my daughter too so if we could all be changed then, YES!
That would be amazing!!” “I will check
into it and I will let you know.” Then
Mr. Groves says to my son, “Jordan, the office in Dallas sent a package here
for me to make sure and give to you.” He
pulls out this box with a deck of playing cards, a coloring book, a game of
jacks with 2 balls, some luggage tags and a set of wings. We said our goodbyes and they said to Amy,
“If you know of any other families who need help, please, just give us a
call. We can set this up for anyone and
would be glad to do it (and they meant that!)
Then turned to me, “If YOU know of any families who we can help you have
them call us, AND if you want to do this again before you travel, just call us
, we can set up another run through to practice again.”
Amy and I said our, “goodbyes, nice to meet yous, and thank
yous” and walked away in AWE! I was jaw
dropped mouth open speechless! It was……wow!
Not 24 hours later, we are now flying OKC to Salt Lake earlier in the
day so we may fly through Denver not Vegas.
My sons social story is getting its final touches made complete with
pictures and newly added rules like, “we sit in the chairs we DO NOT LIE ON THE
FLOOR!”
Overwhelmed with emotions I called and blabbed to my army
“YOU WOULD NOT BELIEVE IT!! IF YOU WERE THERE YOU WOULD NOT BELIEVE
IT!!!!” I am still overwhelmed and so
completely grateful. I made one comment
about it to a therapist who could have easily focused on anything else but
heard the need and acted! She went above and beyond beyond! My son’s social story would have been “help
enough”. This boarders on
miraculous!! Mercy Outpatient Therapy
and the Mercy Hospital Administration allowing her to be there was a gift
beyond measure! Yes, I work for
Mercy. This was a day that should make
EVERYONE who works there PROUD to be a part of this level of commitment,
service, dedication, and magic!
The people at Southwest and TSA were so kind, and
gracious. They bent over themselves
bending over backwards to accommodate us in any way they possibly could. It was a humbling experience. They were compassionate, patient, spoke to Jordan,
asked questions, addressed concerns, and went well past any customer service I
have ever personally experienced. I felt
their compassion and their level of desire to understand what it would take to
help Jordan understand. This handful of
souls created a moment in time for me that I will never forget! This will go down as a first of what I pray
will be many more to come in which I sensed a battle. I was prepared for the fight, the explaining,
the “looks” the comments all of it!
Instead I was greeted with open arms, welcoming hearts, compassion,
understanding and genuine concern for my son.
I was ushered through a process by professionals and for once was
allowed to be not my son’s safety net, not his clinician assessing for areas I
would need to address with his ST at our next appointment, not his
photographer, not any other role except MOM.
I was just his mother telling him to “get up off the floor and stop
licking the glass that’s nasty!!!” MOM!!!! I was just momma. No fighting processes that don’t always work
for us. No trying to get some person who
works at the airport to understand that beating my son will not help this
matter at all. I got some interesting
looks from other passengers, but that was because we were a walking circus line
complete with 2 TSA agents and a camera operator! Jordan did very well. I have every confidence he will travel
amazingly well. This opens a whole new
world up for him and me, literally. I
have said now for the past several days “I didn't have to do anything. I just
told Amy and she took care of it ALL!”
No clawing out someone’s eyeballs, no yelling, no frustrated
conversation with ANOTHER someone saying “No, we cannot do that”. It was just….DONE! And it was magic,
folks…..MAGIC!
We have had some major firsts this year: First summer camp,
first time in front of his whole school quoting a book, first OKC Thunder game,
first time meeting Rumble the Bison (love)!
Now, comes a huge first: First time on an airplane. Wow! I will say I am thankful my army is
accepting and understanding and kind. My
army loves us. This event has restored
my faith in humanity! This level of kindness, compassion, and understanding was
freely administered to us by complete strangers who do not work in the medical
or educational communities. And all they
wanted was for my family to have the best experience traveling as we possibly
could! What a difference it has made!!!
When these moments happen I think back to when he was newly
diagnosed and he had this horrifyingly long bedtime ritual; what it took to get
him potty trained; when he used to randomly wander out of the house and once we
found him in the creek; when he started school and had the horrifyingly long
process to get him to change from warm soft pajamas into cold scratchy
jeans. I think of those moments and I
think of all those people who said, “Oh, try this” “Try……that” “try this and
that” until the combination of this this that that and this finally
worked. We have battled and battled
together and I am thankful for each and every one who has battled with us! I remember the helplessness I felt as a
mother during those times; never hopeless just helpless. I would think about how to make it easier for
him. I would often wonder if there would
ever be a day where he would be able to go to dinner without screaming that
high pitched shrill SHREEEEEk I look
back to that mom and smile. We are doing
things now that wouldn't have entered into her brain as possible. We have come an amazingly long way and
apparently the sky’s the limit!!!!!
