This morning, as I was assisting Joe, our youngest
son, with brushing his teeth, he looked up in his usual way to avoid toothpaste
running down his face, and concurrently reached his left hand into the right
pocket of my bathrobe, knowing my cell phone would be there. Joe suffers from serious phone envy, and
often snatches mine away, then giggles like he’s done it inconspicuously. He gently
slides the phone out of my pocket and places the sleeping, dark-screened cell
phone to my ear. He loves to emulate
making a call--knowing it can often reap the result he desires. He generally wants to call someone, even
though in real life he has never even dialed a phone or had a full on
conversation, except with his Dad, and only on the speaker phone. Sometimes he
wants me to call his favorite restaurant, Chili’s, and pretend to
place a to-go order. Sometimes he wants me to call the library and request his
favorite book. But, most of the time, he wants to pretend call his Dad.
Joe’s Dad is the world to him—you might even call
him a “Daddy’s boy”. He and Dad are like two-peas-in-a-pod. But, this week, Dad
is working out of town, so Joe knows we need to call him in order to talk to
him.
I ask my usual question in this situation, “Who
should we call, Joe?”
With a mouth full of toothpaste he still manages to
answer in a mumble, “Dad”. It sounds more like, “Daa”.
I reply with the phone to my ear, “What should we
tell Dad?” trying my best to distract him from one of the most sensory-defensive
activities that exists in his day, even though he’s 26 years old.
Joe doesn’t miss a beat and manages to gurgle, “Is
King”.
Me, not completely understanding this newly
developed phrase, I ask, “Is Dad King?”
Joe says, “Yeah…!” with a strong sense of
enthusiasm.
We finish brushing, rinse, spit and wipe his mouth.
I reclaim my cell phone, place it back in my pocket and shift Joe toward his
hoodie to complete his ablutions for the days’ work ahead. Then, my mind shifts
back to a much more chaotic, stressful, sad time some 15 years ago.
Fifteen years ago, Joe was only 11 years old. Of our two sons, he has most definitely been
the one that has taught us the critical lessons of parenting a child born with
Fragile X Syndrome (www.fragilex.org), some of which are patience, determination and, the most
difficult, a sense of calm. Fifteen years ago, my husband, Chris, and I were
knee-deep in a world of hopelessness, frustration, sadness and despair. Joe was testing every cell in our bodies as
parents, as humans and as a married couple.
Sometimes with a child who is severely affected by
Fragile X Syndrome, there are behaviors involved, extreme behaviors. Jake, our oldest son, now 28, has never had
many of these behaviors, so this gives us a sense of perspective on the genetic
disposition. But, Joe had the full gamut
back then.
From the time Joe was born, he cried, whimpered and
expressed his disdain for many things in a variety of ways. Suffice it to say
that Chris and I have learned a mountain of methods and approaches to help Joe
and, in turn, help us cope and eventually live our day-to-day lives in a
semi-peaceful state. It’s taken years and years of blood, sweat and tears to
get where we are now. If you want to
read about the details, you can always read, Becoming Mrs. Rogers my
memoir about our life. All of the sometimes gory details are there for you to
enjoy.
The book also details the amazing people that took
us under their Angel wings and taught us how to live and how to help Joe, and
subsequently, Jake. Each process was
trial and error, as there are no perfect answers. Eventually, after years of successes and
failures, we honed our approach, and added some techniques of our own. There is one very effective method that I did
not include in the book. I simply couldn’t
find the words to describe this method in such a way that I thought it would be
void of judgement or reproach from the reader…and I am still not sure.
Until you have a child with severe needs, you will
never know how desperate you might become. You hold your newborn, innocent,
warm, beautiful baby in your arms with a feeling of hope and joy and love. And
then, you receive a devastating diagnosis that crushes every single joyful
thought you ever had and your direction drastically shifts to desperation. You
would do anything to make their world better.
It is utterly the most brutal and devastating news you will ever hear.
You attempt to take in a breath, but no air will come. Your body is devoid of
life for a split second….until you realize you must gasp even if it causes
uncontrollable tears to fester.
So, we did take in deep breathes, day after day
after day. We learned and listened and tried. Chris and I tugged and pulled at
each other, and eventually, embraced our fate. It was never easy and still isn’t. Especially for a Dad. He’s an amazing Dad
that works his tail off every single day to provide for us. He works at a very
physical job, but still finds energy to give us, and especially Joe.
As we were still in the phase of trying to find
every possible means by which to make Joe’s world more manageable, and learn
ways to help him cope and exist in our world, we also discovered something
bigger than we ever expected. An unconventional way to help build trust and
help Joe physically at the same time.
One day all those years ago, Chris came to me and
asked if I ever thought about the physical discomfort that our boys must feel
due to the extreme stress they experienced from the world around them? I said,
yes, I did, but there did not seem to be any clear symptoms.
I often had some pretty intense aches and pains due
to the physical stress that my body endured while caring for these two big
guys. Nothing felt better than a white-knuckle neck and shoulder rub to ease
the piercing pain from a knot in my shoulder blade. My favorite "rubber" was
Chris because he had such strong hands. I never seemed to give him as good a
rub as he gave me because my hands didn’t have the same strength.
Chris said he wondered if, as tense as Joe was on a
typical day, he would tolerate a back rub to help him relax and relieve some of
that tension. I questioned whether he would even let Chris touch him for more
than 60 seconds…he loved his Dad more than anyone, but touching his back, I
doubted.
That night, after Joe had had his hot shower, he and
Chris came downstairs where I had laid out one of my exercise mats on the floor
in front of the television. Chris had waited to help Joe put his shirt on in
hopes of postponing until after the trial rub. Joe was outwardly confused. I
suggested he lie down on the mat, an act that was totally out of our newly
established routine, causing some verbal backlash from Joe.
Chris talked calmly, something we had both been
working on, as it didn’t come naturally to either of us. He asked Joe to lie
down again, saying that, “Dad is going to help you”. After a few more words of
gentle coaxing, Joe did finally lie down on the mat. Our usual “Jeopardy”
programming played on the television as Chris took a moment to warm up his
hands. I could see a bit of hesitation in this
masculine-and-completely-homophobic man that I loved. This was NOT something he
was used to or familiar with….ever. I
sensed his inner struggle between being a “man” (and men don’t touch men in his
mind), and desperately wanting to help his son…no matter how much it cost him.
Chris placed both hands firmly and silently on Joe’s
back. Joe lifted his head a bit not knowing exactly what was going to happen. It
was difficult to watch as a Mom and the nurturer in the family. I don’t think
anyone in the room was really breathing at all.
Joe relinquished a bit and sunk into the mat a little at a time. We all
blew out our breath.
Chris began to rub with guarded pressure at first,
and increased it bit by bit. After a short 60 seconds or so, Joe was unable to
tolerate the situation, and sat up like a shot. Chris helped him with his shirt
on and Joe made his way to his usual spot on the couch, readying himself for
his weighted blanket.
The whole 60 second experience was a success in several
small ways. Joe now knew what the words, “Dad is going to help you” meant, and
he tolerated something new and extremely difficult for his body.
Dad had some pretty huge accomplishments that night,
too. He did something completely out of his comfort zone, and he gained an
incredible amount of trust from his son that no one else on earth had.
We continued this exercise every night for
God-only-knows how long. At least until a point where Joe would actually gain
some physical benefits from a back rub. Chris talked to him in a calm voice
throughout each massage, and felt many knots that often took time to relax. It
even got to the point where Joe would close his eyes and melt into the mat
until he was almost asleep—a monumental achievement compared to that first
time.
Over the years, we have shifted methods and
approaches, finding some had long-lasting effects that didn’t require ongoing
use, like this one; and others that we still use every day. But, these boys
continue to surprise us every single day.
Just last week, I was traveling and Chris was home
with the guys by himself. He told me about something that nearly brought me to
tears. The reason is because it shows how incredibly far-reaching some things
can be, and how far our guys have come.
On this afternoon, Joe comes into our bedroom where
Chris is changing clothes. In order to fully understand the depth of our world,
you must know that Joe is capable of speaking about 100 words, and most days it’s much
less. Anyway….Joe had seemed a bit restless on this day, according to Chris. He
seemed to want to say something but it seemed he could not find a way to muster
the words.
Joe bounds onto our bed and sits cross-legged. This
in itself is not unusual, but Chris sensed he needed something.
Chris says, “Joe, do you want something?”
Joe says, “Yeah!!” with a certain amount of decisive
exclamation.
In an unusual act, Joe reaches for Dad’s pillow,
places it at the foot of the bed, and lies down on his stomach!
Chris not
believing what he was seeing, was dumbfounded and speechless for just a split
second until he said, “Joe, do you want a backrub????”
Joe exclaims, “Yes!”
A chuckling, open-mouthed, stunned Chris says, “OK!”
This HAD NEVER happened. Not only that, but it is rare, and I mean rare,
that our guys will even tell us what they need!
Chris warmed up his hands, and even though he was
tired from a full day or household chores, he relaxed and gave his son what he
needed. He gave his son something that was incredibly difficult for him to give
one day a long time ago, but which now is just a part of his life.
This is why, in Joe’s eyes, his Dad is King.
