The difference between me and you is The Incredible Hulk (& I think
he had Asperger Syndrome too)
My experience raising a young man with
special needs
If I’m lucky enough to look back on my life in 60 years (I’m
34 now) no matter the trials that lay before me, I’m certain I will say parenting
a child with special needs is the single most challenging task I ever undertook
- and yet the most rewarding. Most parents in general, I think, would agree
though. Raising our kids is the most beautiful, painful, awesome, insightful,
thankless, inspiring, tiresome, fear-filled, excruciatingly annoying, agony
rich, tedious, tender loving job on earth. It is the thing - most of us will
say at the ends of our lives, that we were the most privileged to have had a
hand in.
Nevertheless
my sisters and misters that have had the task of raising children with special
needs will know, our paths as parents are paved with a different kind of stone from
that of parents with typical functioning children. And some days it feels like
God chose the wrong person to give care for, and advocate for this wonderfully
messy, and complicated little human. “It’s not me!” You’ll scream in despair at
the top of your lungs, “I am not the one you intended to raise this child.”
You’ll sob from bitter exhaustion. “It couldn’t possibly be me.” You’ll
question. “Why did you choose me? I have no idea how to raise this young person,
or how to guide him.” Momentarily you’ll give up. “I can’t help him. I can’t do
it.” Then you’ll pick yourself up off the floor, or the sofa (in my case) of
your best friends’ living-room, you’ll go to your child, you’ll wrap your arms
around him, and hold him as long as he’ll allow. He’ll say in his awkward
little way, “I love you.” – And for an instant, it will feel like the very end
of a fairy tale, when they say, “And the two of them lived happily ever after.”
– Only the process just starts all over again.
So when
other parents are talking about the challenges of raising their “normal
children” and comparing those tasks to yours, you’ll tilt your head and smile a
bit, knowing deep down how very different your journeys are. Some folks might
recognize this, and say to you, “I couldn’t do it if I were you, I don’t know
how you do it” (as if that’s somehow comforting). You’ll think to yourself “how
in the hell do you know what you would do? Because what other choice would you
have but to do it?
A few years ago on Mother’s Day, I took my kids out to see
the new Avengers movie. When I left there I made a post that said something
along the lines of “I’m in love with the Hulk, he’s a beautiful hot-mess of a
man.” I fell in love with Bruce Banner that day. Why did I fall in love with
him you ask? Well because figuratively speaking, The Hulk is my son. And you
don’t want to get him angry. You don’t want to disrupt his world. Trust me, you
don’t. But, being his mom I must integrate him with the very large, and real
world in which he resides. A world that as he grows he’s supposed to take his
place in. As a parent, that is my duty. How do I integrate The Green Giant into
a society where he can function? We know from the comics and movies that what
The Hulk really needs is seclusion. But the longer he is secluded the more
alone and real his differences become to him, the sadder and empty he becomes. He
needs nourishment. One can’t be nourished properly in seclusion. Can he? At
least not forever.
Recently
I attended the funeral of my daughter’s friend who committed suicide weeks
before her 16th birthday. What do you say to that mother? What do
you say to yet another mother, who tells you in confidence they found her son
hanging in the bathroom - another minute more and he would have been dead? This
is what mental illness looks like people. Suicide becomes the very last attempt
one can make to quiet the mind. These are cries for help, or a release from
feeling strong armed and caged in their minds. Are you with me?
So what
do you say? If you don’t know what to say, you say nothing, lest you say
something stupid. Close your eyes for a moment, and imagine it happening to you.
It’s frightening isn’t it? The difference between me and some of you, is that I
get it. I don’t always know what to say, but I’ve learned what not say to those
parents. I’ve been there. I know what it feels like to have The Hulk come home
from school in a rage, wanting to hurt himself because he’s tired of no one
understanding him, and appreciating his differences. The world is not equipped
to deal with his differences. So they seclude him, because- well what else do
you do? He’s tired of not having friends, and of finishing his classwork in the
time it takes the teacher to explain it to the others. He’s tired of not being
able to do the things he wants while he sits there waiting for his “peers” to
catch up. He’s tired of not being included to the birthday parties and
sleep-overs. He’s tires of the misunderstandings, the missed connections, and
miscommunications. He’s angry because he’s different and he knows it, and the
world just wants him to stand in line, and follow suit, but standing still makes
him queasy, and his body sometimes moves without his own permission. I’m
convinced The Hulk was “on the spectrum.”
Feeling like a good parent isn’t always easy. Feeling like a
good parent while monitoring, evaluating, and assessing a child with special
needs, well as my friend puts it, “makes you feel like his case-worker rather
than his mother.” We don’t always get the luxury of just being mom. Especially
when I think my boy isn’t being treated fairly. Then I turn into super-hero,
bad-ass, robo-cop, defense attorney mom, weaving in and out of the roles, of
mother, advocate, and social worker, as I tie your words into knots, and push
them ever so gently back down your throat to a place where you wish you never
spoke them.
Parenting
a child with special needs takes a vast amount of courage that is filled with
miniscule triumphs. The road is laborious; it is unstable, crumbling, and unreliable
in many places. People who should have the answers, don’t always have them. And
sure anyone could say, "Whose road isn’t uncertain? Life is hard! Buck up!”
But those of us that have traveled both roads know the roads are built much
differently. One is tattooed with the footprints of common folk doing common
things, as they coast through to their common destinations. All of the places
they need, neatly marked on maps. The other was put together hastily, and never
quite finished so we end up building our own roads so we can get where we need
to go, only to find that the places we need don’t always exist, and so we end
up pioneering landmarks on our own maps as we “blood, sweat, and tear” our way
to equality for our children. We fight for their basic rights, policing new
situations they are reluctantly integrated into. Because if we don’t, well who
else will-? They’ll be swept into a system that knows no middle ground, one
that knows no grace, nor has the time or wherewithal to help extract their
potential.
And so
at the end of the day, we are different. We want the same things, yes. But what
separates me from you, is that I am the girl who in the tireless hours of the
night searches for a cure to the gamma that poisoned The Incredible Hulk.
Waking up with sleep crusted eyes each morning just to catch a glimpse of the remarkable
young scientist that he strives to someday be, hoping, wishing, and praying
like hell that nothing happens that day to make him angry.
Anyone who knows him can see the progress he’s made, the
incredible strides, and you know under all that green, Bruce Banner is waiting
patiently for me to help him change for good into the great man he’s always
been intended to be- green free.
