So, I was looking through some of my older files, looking for something in particular, actually, when I happened upon this. A manifesto, of sorts, that I had written in July 20, 2012. Almost a year ago. And my, how some things have changed. And even more, how some things have stayed the same. Sleep deprivation, lack of respite, Tag-team parenting.. Are still a big norm in our household these days. But it was shortly after this disaster, that my heart was touched in a way, that has changed our family forever. Advocacy, Mentoring, and Service for those struggling with Autism has been placed upon me, and in that almost year since this writing, amazing things have begun to happen!! MALS Place is up and running, and starting to grow. Already, we have groups interested in sponsoring and donating to our group. I have been asked to sit in on parent panels, that speak with our local and state governments, to take part in regional cadre meetings and classes, to become a Parent Mentor through Easter Seals ARC, And just recently, I was contacted by Autism Speaks, and invited to be on their Fort Wayne Walk's planning committee!
I can't win every battle I fight. I'm not naive enough to believe that. But, if I don't at least fight... I won't win ANY of them!
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It has been an especially trying week in the Dennis
household. Between the heat and the humidity, a bout of Autism-induced
insomnia, lack of sleep on Mommy and Daddy's part, and just the everyday
stresses of raising two young boys, Yesterday's disaster, put my husband and I
into a tailspin, to say the least.
Matthew is working very early morning hours at FedEx, having to get up at 2:30
in the morning, and coming home anywhere between 7 and 8:30 in the morning,
depending on their workload. Yesterday morning (Thurs. July 19) he was
especially tired, having not slept very well the night before. As for myself, I
had been up all evening with Malcolm, who, as I said, was suffering from some
Autism-induced insomnia. Of course, our two year old, Jace, snored happily
away. Anyway, After Matthew, my husband, came home, we were both pretty
exhausted, and about 10am, we decided we would put the boys in our room, turn
on a movie for them, turn the lights all out, and declare a 'Family Nap Time'.
After some fussing, the boys finally quieted down. The next thing I knew, I
heard my husband, from the living room, yelling out, "Oh my God... Oh my
God..." It took me a moment to realize, I was awake, and that I wasn't
dreaming. When I trudged out to the living room, I stood there in disbelief.
Malcolm figured out how to unlock our bedroom door.
The night before, we'd made popcorn. In the midst of the insomnia, lack of
sleep and frustration, we'd left the popcorn bowl on the dinner table. That was
now empty. It appeared as if someone forgot to put the lid on the popcorn
popper. It was everywhere. Mixed in, were these multi-colored flecks, that
didn't register at first. Until my eyes focused on the back of the dinner
table. There was our fish tank. Half full. Popcorn (with extra butter) floating
in the water. The water, by the way, which I had just changed two days earlier,
now looked like skim milk. And there was Goldie, our goldfish, floating at the
top. Liberty, our Beta, was MIA at the moment. Matthew and I went into instant "parent
panic". "We'll deal with the boys later. First, we gotta find that
fish..." So.. the search and rescue began. It was a couple of minutes, but
I found him, next to the tank. I yelled out "I got him! Get a bowl!"
scooped him up, and ran after my husband, into the kitchen, who was promptly
bringing the faucet to temp, so that we could attempt to rescue this poor
creature. Finally, dropping him into the bowl, we waited for what seemed like
forever, before he finally fluttered about, and began swimming. Whew. Only one
fish lost.
Then the clean up began. It took us several hours to FIND all of the pieces of
our tank, to sift through the tank rock (the multi colored specks I spoke of
earlier), the popcorn, carpet threads and other debris that the kids had managed
to leave in their wake.
It was time to start dinner when we finally finished the last of the clean up.
My nerves and my sanity were frayed. Matthew was not far behind. The boys had
been relegated to opposite ends of the house. (Less clean up is needed when
they're separated. Apparently, in the field of demolition, they make one heck
of a team.) By the end of the night, the boys were in bed, looking deceptively
peaceful, my husband was heading to bed, and my brain was in overdrive. I sat
down at my computer, tried to distract myself with some mindless entertainment
(Reruns of Glee.) And without thinking, or even realizing I was ABOUT to, I
just looked up and asked, "What is it, you're trying to make me
understand? Please?" I was then compelled to open up Google. "Okay...
What am I looking up?" And without thinking, I typed in, "Bible
Verses for Autism". The same verse kept appearing. Entry after entry.
Matthew 25:31-46. I didn't get it at first. I had to read it 4 or 5 times. Finally,
I just looked up, put my hands in my lap and said, "Okay God. I appreciate
your faith in me. But please do not compare me to Job tonight. I do not have
near his patience on a good day. Just this once, treat me like the idiot child,
and just... give me the simple version."
I read the verse one more time, and it was as if someone had come by with the
cliff notes version, or drew pictures for me. I couldn't believe the sudden
understanding that happened in my brain. So fast, so sudden, that all I could
do, was begin writing. (That's what I do. I write.)
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“Disabled children are a blessing”
It is something that we have all heard; even long before we were parents of
disabled children. It usually is offered in a way that makes it seem like if
you have a disabled child, you also have some indefinable, magical fairy dust
kind of ‘blessing’ where an angel waves his hand and, poof, you are blessed.
Once you become the parent of a disabled child, you begin to see what that
‘blessing’ really means in concrete terms, because one of the first things that
happens to you, in your early grief, is that you become grounded. All of the
trivial distractions, the petty rivalries, the BS ego trips, the vain ambitions
and the frivolities of life suddenly become very unimportant. The crap in your
life starts to fall away and it is replaced by seriousness about things of true
value.
Diagnosis brings with it a choice, to continue to serve yourself, or to take a
hard look at your life and begin making greater and greater sacrifices for the
wellbeing of your child. Because we love our children, very few of us choose
the former.
In light of Matthew 25, this is the blessing of the autistic child. God eases
you into falling in love with the Least of These, just like He is, so that when
diagnosis comes, the choice to serve them is automatic.
For our children’s welfare, parents in our community give up their careers,
their houses, their retirement, their health, their relationships, their free
time, their dreams, their pride and a hundred other things that typical parents
‘get’ to hold on to. When we discuss the sacrifices that parents make, it is
usually from the perspective that parents are losing out on the better life
that should have been theirs.
Making this even more painful, some of these families will turn their lives
upside down for children who may not ever ‘get better’ or live independent
lives or even be able to acknowledge their parents at all. Some fathers will
never be greeted with excitement by their child when they come home from work.
Some mothers will never hear, “I love you, Mom.”
But Matthew 25 puts this phenomenon in a whole different light. What Jesus is
telling his followers, just as He is about to leave them, is that whatever they
sacrifice for the vulnerable in their world, they sacrifice for Him.
In the Bible, God asks believers to give just 10% of their income to Him. What
do you think it means to God when a family who has lived all their lives in one
place, tear up their roots and move across the country to a state that has
better services for their disabled child?
Read Matthew 25:31-46 again and pay particular attention to verses 35 and 36.
For I was hungry, and you gave Me something to eat; I was thirsty, and you gave
Me something to drink;
We don’t just feed our children, many of us feed them gluten free, casein free,
organic, hormone free, dye free, non-allergen, supplement enhanced diets that
cost more money and take more effort than we would ever dream of spending on
ourselves.
I was a stranger, and you invited Me in;
Our children are strangers to us in so many ways, yet many of us spent much of
our time working hard to draw them out; to know them and to be know by them.
The invitation is constantly being extended.
…naked, and you clothed Me;
If the time and energy that we spend clothing and diapering our children were
invested in the space program, we could have colonized Mars by now.
I was sick, and you visited Me;
How many hours have you spent in doctor’s offices, at conferences, in training
seminars, listening to lectures, and reading books so that you could attend to
your autistic child's health? How many nights have you stayed up trying to
comfort your little one who could not sleep?
I was in prison, and you came to Me.
How many times have you looked at your child who would not or could not respond
to you and longed for him to be free enough to tell you what was going on
inside his mind? How many times have you held your little one and cried because
you just missed him?
All the love, all the acts of service, all the sacrifices, all of the other
plates that you have let go of so that you could keep just this one spinning…
He sees it all, and He says:
“You did it to Me”.
Remember that night that you were up cleaning poop off the wall in tears at 3
AM after eight consecutive months of broken sleep? That injury you sustained
trying to save your child’s life for the third time that week? That beloved
thing that you gave up because you needed those resources for your child? He
was right there, He saw it all, and as far as He is concerned, you did it all
for Him.
When your child was diagnosed with autism, or with any disability, God put you
on a new road. It is rocky and dangerous and to journey on it is hard. It
humbles you and strips away pride that would have been yours had you not gotten
the diagnosis. But Jesus said that He can only use broken people. People whose
egos have melted away, people who have been brought to the end of themselves
and had the love of the world’s economy squeezed out of them. People who are
dieing to themselves. It is only then that they can begin to see, and to love,
God’s economy.
Your child’s autism lays the ground work for God to be able to make you into a
person who really knows Him and understands the world the way that He does.
The Corps has to strip away much of the man that showed up on their door step
before they can build a Marine. My first three years as the parent of an
autistic child have been a spiritual Paris Island. I am having the crap in my life
stripped away by trying things based on the old paradigm, failing and having to
go back and relearn the basics.
It has brought me back to a faith in God that I have not known in many years. A
more child like faith that was less concerned with how I appeared and more
concerned with just trying to learn from God how to get it right. His ‘Right’,
not the world’s right. It is a faith that is removing my independence and
accomplishments and taking me back to the dependency and instability that I
knew when I first met Jesus. As I am pushing forty, I am learning how little I
really know, how weak I really am, and how much the smallest thing that I give
to God really counts.
And God has used Malcolm to do it.
THAT is the blessing of the disabled child.
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