At the end of the Summer I was invited to join my aunt on a three-day vacation to a resort only a few hours from home. Wanting to get in one last adventure before school started, we excitedly went out to the mountains for a mini retreat.
My youngest son, Corbin, is five years old and is diagnosed
with autism. He is preverbal, and certainly adds an element of surprise to any
well laid plans. I often refer to him as my “wild card” and this is
specifically significant during a vacation. I’ve been blessed that my son,
despite his challenges, is a relatively easy going kid. He loves to be happy,
and the simplest of things can make him ecstatic. I’ve never seen another
child, or person for that matter, experience the pure joy that I’ve seen on his
face. That being said, vacations or even a trip to the grocery store, are a
whole new experience. There’s no way to explain what it’s like to raise a child
with autism, but I’ve been blessed with family and friends who have taken us
into their lives and shared the experience with me. I am not alone.
Some days when I have to pick up my 45lb son because he
doesn’t understand my directions, or refuses to walk, or is upset, I will
actually feel a jolting pain that runs through my eyeballs, down my jawline,
into my back and to my hip. The hip that I then rest his flailing body on. I am
so in my moment that I don’t even know what bystanders think, or say. I am just
looking for the next point of relief for him…and me. Some mornings, especially
on vacation, the days start at 3am. A new place is challenging to adjust to and
sleep becomes a gift, never one we take for granted.
The resort had so many hidden treasures, and exciting things
to do. My aunt took my older son, Landon, around ensuring that he had many
incredible experiences. Some I had the pleasure of watching first hand, but many I watched on video after. Landon learned to swim that weekend, climbed a rock
wall, made new friends, and tasted the magic of cotton candy ice cream just to name a few of his adventures. Corbin
showed some interest in the activities as well and even tried a bungee jump
trampoline, but mostly he spent the afternoons on a swing. There was a little
swing set in the corner of the activity area, away from all the noise and business.
We would venture out to try a game or ride, and after a few minutes Corbin
would guide me back to the swing by the stream where he would happily swing for
hours. Sometimes I felt isolated over there even though the gorgeous mountains
behind the rocky stream was a breathtaking view only made sweeter by the
constant excited chatter of Corbin’s glee.
There is nothing untouched by autism, and that’s for good
and for bad. If you don’t have a child with autism, then you may not know the
choking anxiety that creeps up on you when the server isn’t bringing you the
check in a timely manner and you KNOW that $h!t is about to hit the fan. If you
don’t have a child with autism than you might not walk into a room and
immediately scan it for breakable objects, automatic doors, climbable
furniture, overstimulating features, or intolerant people. If you don’t have a
child with autism than you may have never been lost in a moment that looked
like abyss to everyone else, but in that moment you understood God.
The morning we were leaving I was taking my son Corbin for a
walk around the resort while my Aunt and older son stayed behind to clean and
pack. Corbin’s “toys” had consisted of a box of pencils, a package of straws,
foam cups, and a few other random items that were lined up, thrown about or
stacked to his unending delight. The room looked like it had housed a frat
party by the time Corbin was done with it, but we didn’t care because he was
clearly having the best vacation ever, and it was just nice to have some down
time while he busied himself with the fine art of mess making.
On my stroll around I saw a boy, about 10 years old, who I
quickly identified as having autism. He was rocking back and forth, sucking his
thumb, as his parents assured him that it was safe to walk into the hotel, and
that he was okay. My own son was behind me. My son was touching his thumb to
his pointer finger as he yelled out “ut ut ut doe doe ut ut ut doe doe ut ut ut
doe doe”. He would then spin twice and take more steps before doing this again.
I think the bright sun, after having just come out of the dark halls, demanded
he readjust and so he was soothing with some various stims.
I continued to walk forward knowing that he was doing his
best to follow and would only be disoriented if I interrupted his
self-soothing. I was suddenly aware that the mother of the boy in front of me
was staring at me. I smiled and she said “My son is like yours.” It was an
initial blow. When my son was first diagnosed at 2 years old people didn’t
really recognize any difference in him. In fact, many members of my family
didn’t even believe the diagnosis. When he was two we still met other two year
olds who hardly spoke, or acted out, but with each passing year the differences
have set in and now most people can tell at a glance that he is different. I
looked at her son, he was clearly autistic. When someone you love has autism,
you see them as the person you love, and that person you love has certain
characteristics that are autism-like. But my son doesn’t seem autistic to me.
When I see other children with autism who do the same things, make the same
movements and noises, I see their autism immediately. Sometimes when the mirror
gets held up to you it can throw you off a bit. Wow…my son is autistic? I don’t
know if I recognized that before I heard those words “My son is like yours.”
As the feeling fell to the pit of my stomach and I starred
at my future, suddenly a miracle happened. My son walked over to the father of
this boy, who was leaning down reassuring his son. Corbin began to caress the
man’s head and cheeks before laying his head on his shoulders and giving him a
hug.
What did this even mean? Did he recognize his divine love
and understanding of the differences our son’s shared? Did he see a man who
needed to know that he was doing his best and it was good enough? Did he just have
a booger on his nose that he was trying to rub off? I really couldn’t figure it
out. My son doesn’t easily attach to others and this was truly an incredible
connection. The other boy’s father felt the importance of it and stayed in the
moment with my son. I began to tear up and so did the boy’s mother. We knew we
were witnessing something beautiful that we would never understand, but we were
both used to that by now.
Hours later we decided to dine at a local restaurant and
shockingly we got seated next to this same family. The boy with autism (I never
did learn his name) came over to my son and offered him his teddy bear. My son
never acknowledged he was there and continued to line up all the silverware on
the table. The other boy joined him but was feeling jolts of excitement that
sent silverware flying. His parents commented on how he never reaches out to
people like this. I knew the importance of this moment for them and embraced it
with them. Then he pointed to Corbin and he asked “Hug? Hug? Hug?” It was the
first word I heard him say and I began to cry again because I knew the joy that
was cascading these parents as their son spoke (which was rare) and desired to
embrace a new friend (even more rare). The Mom asked if he could hug my son,
who was busy lining up sugar packets and creamers and didn’t seem to mind the
attention of his new friend.
A couple years ago I would have seen this boy struggling for
words, flapping his hands and challenged to control his body and I might have
felt sad for him and his family. But now I saw through new eyes, and my body
felt joy that few will ever know. I was in a moment of beauty like a paint
stroke in Michael Angelo’s masterpiece. I was a witness, and participant to
greatness. “yes, you can hug Corbin” I smiled at the boy. He leaned in and
hugged my son and then I watched a geyser of joy erupt as he stepped back
jumping and clapping while squealing with glee. You and I have NEVER been that
happy. We don’t know what that feels like. We can only for a moment witness it
and imagine being so present in a moment of joy that you forget it will ever
end.
By the time that meal ended both myself and the other mom
were sweating and stressing trying to confine our free birds who were
protesting to every environmental prison bar. We both left our coffees and full
plates, we both had to comfort our boys who had been over extended by the
regulations of eating out. We both watched their frustration at our request
that they adapt, knowing they couldn’t. I imagine we both felt as though we
failed. We both carried our boys out with aching muscles and weary souls
wishing that for a moment they could just fit in. But we both left having seen
pure joy, unbridled love, and infinite peace in a single moment. We would both
continue to do everything in our power to allow our boys to experience that as
often as possible.
There is a lot of talk these days about the cause of autism.
Many scientists are trying to figure out what it is, what it isn’t, how it
happens, how to stop it, cure it, or understand it. Many parents try to sort
whether it is their greatest affliction or blessing. My son has allowed me to
truly feel saintly. He has given me the privilege of sacrificial love. Not
obligatory love, or mandatory love, but a love so deep that the sacrifices
happen so organically that when acknowledged you simply admit that you could be
no other way. I don’t know what autism is, I don’t understand my son’s
regressions, and I often miss what might have been. I feel heavy hearted about
the future, and tired…so tired. But I have seen things most will never
understand, and I have felt love beyond what most will ever know.
I’ve learned that we are our actions not our words and that
love is not something that happens to you, but it is something you become.
If you asked me last year if I could snap my fingers and
take my son’s autism away, I would have told you yes. I long so badly to talk
to him. I dream of sitting on a park bench, he is wearing a red baseball cap
and a red and black checkered jacket. He tells me the park is beautiful and
that he loves the nice cool breeze. Some days I feel like I would
give everything I am to have that moment. But I’m learning to love moments I
never knew I desired. I’m learning to appreciate that while I don’t know what
is going on in his mind, I know exactly what’s going on in his heart. I know
his heart better than I know my own. I love him deeper than I’ve known love can
go.
To the stranger who told me “my son is like yours” I have this to say:
I know you have cried harder than you ever imagined. I know you’ve
woken yourself up sobbing and you’ve felt guilty for it. I also know you have
laughed freely as you’ve watched your son spin in a field and his joy was so
contagious you caught something that stays with you always. I know that you’ve
wanted to categorize all of this. You’ve wanted it to be good or bad, and
you’ve wanted to know why or how, and then you’ve allowed yourself to let go of
what everyone else seems to need…answers. I know you’ve stopped trying to
understand your son, and instead you’ve allowed yourself to experience him. I
know you wouldn’t trade one single thing about him and that you still cry, and
long, and reach for things you’ll never have. I know that you’re one of the
most grateful people in the world. That you look at him as he sleeps and wonder
how you’ve been so blessed. I know that you’ve sometimes made 18 refused meals
in one day and wondered why you. I know that eye rolls used to hurt you and now
they make you stronger. I know that you’ve found a world you never even knew
existed where you watch your son bring out a beauty in people that only he can
find. I know you see God at work in obscure moments that you could never
express to anyone because much like our non-verbal children, the experience is
beyond words and in the silence we fall prey to loneliness but we also
transcend the need to be understood. To the mom who uttered those five words
“my son is like yours” let me extend my deepest condolences and dearest congratulations. Few will understand your trials or your triumphs but those who
do are blessed with you. I’m sorry for your struggles and I would do anything
to give you that missing piece, but we’ve been gifted a breathtaking picture that far outweighs what we can’t understand.
You are not alone.
Janaiah von Hassel
