disclaimer: this is a story that has been many months in the works. it seemed only appropriate that this is where i post it, a place of so many inspirations. a story begun on the way home from the hospital one hot, sweaty day in july. a story that will never really end, but has at last come to a peaceful conclusion. for now. second disclaimer: it's long. really long. but straight from the heart. a story of who i am, where i've been, and how i got to where i am. a story about my inspiration.
and so if you're feeling up to it: read on, my friends. read on.
all of these lines upon my face,
tell you the story of who i am.
so many stories of where i've been,
and how i got to where i am.
but these stories don't mean anything
when you've got no one to tell them to.
it's true, i was made for you.
i climbed across the mountaintops.
travel across the ocean blue.
...
oh, because even when i was flat broke,
you make me feel like a million bucks.
you do, i was made for you.
...
they don't know who i really am.
and they don't know what i've been through
like you do, i was made for you.
...
so many stories of where i've been,
and how i got to where i am.
winter semester 2011 i began my major classes as well as
preparations for romania. the professor for the intro class to my major is
currently working on a study concerning children with autism. i never used to
know much about autism besides the fact that a neighbor boy growing up was
autistic. in class, i learned a little more, and soon i found myself becoming
fascinated. completely and totally fascinated until realizing that i’d found a passion. why? i didn’t know. it
didn’t make sense at the time, but i just couldn’t get enough, though some
things admittedly still scared me. for the most part, however, everything about
autism fascinated me. i watched the film, temple
grandin, as part of that class, and was amazed at how interesting i found
it. after watching it, i wanted to make the whole world watch it, so they could
somehow see and understand this perspective. and it was in those moments that i
remembered, no one else really cares. even worse, i used to be one of those
people – closed off and immune to such a perspective. especially because the
thought of working with anyone with special needs seems kind of intimidating to
the general public if you have no experience in which you quickly learn how
wonderful it is. near the end of the semester, my grandma invited me to a
lecture being done at uvu about autism. i wrote my research paper for romania
on autism and chose it as my topic of study, though we all knew we’d encounter
much more than just our research interest upon arriving in romania. a simple
overview of my background, and a very limited, but intrigued viewpoint.
pause.
shift. now we’re in another world.
this is a story about a mouse. a mouse and a room that was
the unfortunate home of this little mouse. i met this particular mouse on may the
sixteenth: a day that would change my life, though i didn’t know it at the
time. this little mouse lived with some other mice – at the time, a collection of
9 besides himself.
on may 16, we made rounds through
the rooms at section 2 for the first time – having an opportunity to spend more
than just a couple minutes with each collection of little forest animals. the first room we went to when touring
section 2 for the first time was the one i was convinced i wanted to spend the
summer in. i had become attached to one certain little girl, a part of the
mouse collection (though a different mouse hole than the one previously
mentioned) and felt so good about it. little did i know. the last room i went
to on the day we rotated through all the rooms was the other collection of
mice, different from the one i had become most attached to. around the time i came to this room many of
the kids are put down for naps. the worker in the room terrified me
(literally), and there was only one little mouse remaining in the room since
the others were at masa (lunch) or in bed by the time i got my turn to meet them.
now, this little mouse, we’ll call fred. freddie
mouse, unlike most the others, didn’t seek immediate social interaction with me
as others would in various rooms when the interns walked in. first clue. seeing as i was left alone with
him during this time, i concluded to mostly just watch him and let him stay
inside his own world. first he wandered
around the edges of the room a bit, before stopping by the pile of shoes by the
door that belonged to his sleeping mice friends. he went to this pile of shoes,
and began systematically lining them up in an orderly fashion across the floor.
seeing this as a very profound confirmation of my suspicion of an autism
diagnosis, i went and crouched next to him to help. after the line had been
created, he started pulling it apart, handing me some of the shoes as he pulled
them out of line. he then, one at a time, took them back from me and created a
line once more. this simple interaction that almost neared on turn-taking was
the beginning of my relationship with fred, though i don’t think either of us
knew it yet.
that night, my group and i cast our
votes for where we’d like to work for the remainder of the summer. everyone
seemed so sure already – a fact that surprised me. i was undecided, though
still leaning towards that original room. however, i very quickly realized that
my original desire was not going to be a reality for me, even though that’s exactly
what i wanted. that would be too easy. i
think because that seemed to be the easiest, the most natural room to be in, is
why i wanted it so much. of all the
rooms that were being toggled among us, there was one with hardly any mention –
freddie mouse's room. michael was the only one who offered to work there,
though going to the apartments was more logical based upon his area of
research. i hadn’t even considered the mice, besides realizing that fred was
the most profoundly autistic at section 2 – a prime candidate for hands on
experience, research, and learning based on my own chosen area of study. and if
we’re being honest, that terrified me. before romania, i had very little
experience working with children with special needs of any sort, and i felt
intimidated, almost to the point of uncomfortable. i didn’t know how to react,
and i’m ashamed to say, was slightly scared of working with such a population.
oh, how wrong i was – the first thing i learned. and i learned it quick. long
story short, you can guess right away how this story goes: of course i ended up
in the place that scared me the most, right in the belly of the beast. mostly
because this room of mice was the one filled with many that required the most
patience and the greatest outpouring of love in learning how best to manage
each of their enormous desires for attention. this is the place i learned that all
you need is a little bit of faith and love to accomplish great things. and when
it all comes down to it, everybody just wants to be loved. because having that
love is everything.
the beginnings of my acquaintance
with the mice of this room were tearful on my end. tearful and overwhelming. i
didn’t know how to reach them. i didn’t know how best to serve them. and i
didn’t know how to care for each of their varying needs. i just didn’t know. but
here’s the thing you must know about little mice: all they do is love. naughty
sometimes, yes. but mostly they just embraced me with open arms and asked for
nothing but love and attention in return – whatever i could give, they welcomed
happily and asked for nothing more.
i made it a goal from the beginning
to get to know each little mouse on an individual basis and figure out how best
to get through to them – what made them tick, you could say. some of them
literally just wanted attention. some enjoyed certain songs, others certain
hand motions, and some had a special tickle spot or movement they enjoyed.
freddie mouse, though. oh, that boy. i struggled. it took me the longest to
figure him out of all my little mice loves and to some extents, it was an
ongoing process for most the summer. however, there was one day in particular
that everything suddenly changed. like magic, almost. before this time, we had
somewhat built a relationship, but it was still quite distant, at best. around
june 9-10, my fred was sick as could be. he had a fever for multiple days in a
row of 40 degrees celsius – 104 degrees fahrenheit! during that time, he was
forced to remain in his crib at almost all times, and by the second day of
containment in that crib, his restlessness was more than apparent. he slept
most of the time, and his misery was obvious. on this second day of captivity,
however, this little mouse of six had
just about had it. in the limited moment he was allowed out of his crib for a
bath and change of clothes, he made a run for it. he ran. he ran to me! he ran to me and let me hug him –
something he usually was more reluctant to accept, if ever. he let me hug him
and hold him, though it lasted only a moment. the following monday, june 13, i
returned to section 2 and received wonderful news: his fever had departed and
he was feeling much better, though it had been a rough weekend. that day, he
let me hug him some more, and be around him, and play along with him. i would
daresay he was almost friendly and inviting of the interaction – an enormously
significant moment for any child on the spectrum. knowing the significance, i
didn’t overdo it at first. i was careful, cautious, and eased my way in so as
not to disturb his need for order.
by this point, i had learned things
about my little fred. character traits, you could say. this little mouse, was
one of the three allowed to walk (mostly) freely in the room. one of the three
that were regularly allowed to go outside in the morning to play while all the
others stayed in. too much commotion in the room, or anywhere, made him nervous
and he usually resorted to self-stimulation (stimming) to resolve this sense of
unease. sometimes it was just standing anywhere in the room and shaking his
head back and forth. other times he leaned against the wall with one hand and
rocked his body back and forward. and still other times, he would lay all the
way down on the mattress or bed, put his hands over his ears, and rock his body
gently, and sometimes more violently, from left to right. when outside, he
preferred to veer away from the huddle of kids, walking around the periphery of
the enclosure. his hand would follow the pipe around the building till he got
to the fence behind the trampoline. upon realizing his peripheral location, a
worker would yell his name and he’d come running back. but not for long. soon
he’d veer around again until you heard ‘FRED! [but his real name] vino
încoace!’ shouted from the mouth of one of the workers. and round and around it
went – practically every morning.
fred is a generally content little
mouse, and because he wasn’t one to seek out or desire social interaction, he
usually went without it and was passed over.
because of his generally content nature, the entire semester i only saw
him cry once. once. and to say it was
one of the most heart-wrenching experiences to witness is a gross
understatement. it was on one particularly sweltering morning – the kind that
all workers spend sitting on the bench fanning themselves, chatting here and
there, but mostly just yelling from the bench at one kid then another for them
to come back and not do whatever they were doing. and on this morning he found
the typically overlooked sandbox just behind the swingset. he sat down in the
sandbox. and then came the hands. then the hands to the mouth. the workers
yelled, he ran away. soon he returned, sitting in the sand again. intrigued.
curious. the workers yelled again, so he ran away again. third time’s the charm
– a worker got up, grabbed him and pulled him away from the sand that was now
all over his little shorts. she thoroughly yelled at him and gave him a good
spanking. naturally, for any kid this would induce screaming and a bit of
traumatization. for fred? oh, fred. he was beside himself, crying harder than
i’d seen any of the children cry. they tried to make him sit down for snack
time, but he was nowhere near any level of composure. he stood in the middle of
the lawn, slightly rocking. the world in this moment was too much for him, and i
was powerless as my little one hurt. i hurt for him as i sat on a nearby bench,
brought him over to me, and held him. i tried to comfort him until he could
forget, for those alligator tears would melt any heart and i would have done
anything to take them away. because this little mouse of mine is always so
content, seeing him anything but is a shock and in this case, a tragedy. (he
stopped crying and resumed life as normal before too much time had passed, but
i’ll never forget those moments, watching him run around crying, and eventually
letting me hold him close and pour out love, if only for a short while.)
by stark contrast to those eyes
welled-up with tears, this boy’s laugh is the sweetest sound of all. hearing
him laugh was like hearing his unused voice. for the most part, he was rather
silent, screaming every so often when reached with overload of senses, when
being dragged to masa, or when being forced to do something he didn’t want to –
typical, you could say. for the longest time, these are the only sounds i’d
ever heard him utter: the sound of silence or the sound of discomfort. there
were very few moments in the entire summer that i heard him laugh. really
laugh! not just smile, but actual sound emanating from him. a sound of happiness. because he has a voice.
my last memories of fred in person
were simple and sweet. that day, i finally got the picture i longed for with
him, two solitary pictures were all i got, and he was smiling! and happy! it
didn’t matter how those pictures turned out. in all the world, the only thing
that matters is that he was happy. i have a snapshot of those few moments, the
moments of happiness – and that is what i’ll always remember him for. at the
end of that day, i gave him a hug, left him in his bed for naptime, and turned
around and walked away. i went into the bedroom near the front door to my room
and gave final hugs to those that were there at the time. as i left, i turned
around before exiting the door and saw fred. just watching me peacefully, with
the slightest presence of an understanding half-smile on his face. and that was
our farewell. a powerful and plentiful silent gaze. and then it was over.
i think of all my little mice often,
but when i think of romania, i think it’s him i think of the most. he is one of
the ones who characterizes my experience – though they all do in their own way.
as i said before: of anyone, i felt the largest connection to fred. i was
intrigued and fascinated by his silence, doing everything in my power to understand
that little mouse’s world. and despite the silence, i felt somehow bonded with
him; maybe even because of his silent and more solitary, but active, nature.
with fred and i, it was a saturated and understanding kind of silence.
i’ve had a hard time writing out
this story. my story of fred: the little boy that will forever be a kindred
spirit, the boy in my dream, the boy that could easily be my aunt’s child as he
was in my dream (or even my own), the boy that really does look like a hales,
the boy that inspires me and characterizes most what i want to achieve in my
future–my career goals that will never be just a career, but a way of life and
a way to touch people’s lives. because when it all comes down to it, language
and communication are everything. it wasn’t until the midst of january – almost
6 months since returning from romania – that i finally learned why i couldn’t
find a way to express everything. i couldn’t bring myself to write it, and i
couldn’t bring myself to say what i was trying to say. no matter how hard i
tried or how many times i tried to continue, it never worked. i had no words
and no sense of what to say. the reason why, is because the story wasn’t over
yet.
when the fall group came home, i
heard in depth the status of some of my kids and section 2. that’s when i
learned about fred. my fred. fred smiles
all the time, she said. he laughs
fairly frequently, she said. she showed me pictures. pictures of fred. fred
being fred. fred smiling. fred hugging. fred happy. and in the moment that i
fully came to realize what this means, i cried. just like in my dream, i cried.
he smiles! he laughs! there are few in this world, if any, that could ever
fully understand the depth of what this means. not only what it means to me,
but also what it means to fred. it means that he has grown. it means that while
i wasn’t there to see the blossoming of his happiness, i was there to know how
sweet it is to be welcomed into his heart. i was there to know that while i
never saw any real results in most of my baby mice, what i did made a
difference. when i look back, i can see the progress. and if even a fraction of
anything i ever did in my life led to being able to help these little mice feel
loved and feel happy, then i am content.
and so it’s true, i was made for you.
see you in heaven, little mice. for it wouldn't be heaven without you.
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