Part 1 of an interview with Karla Akins,
Author of A
Pair of Miracles
It
was not long after Karla Akins and her husband brought their adopted sons home
from the hospital they realized the boys were not behaving and developing as
they should. A few months later they learned the boys were on the fetal alcohol
disorders spectrum, and by the time they were four, they were diagnosed with
autism. Twenty years ago, autism was not as prevalent as it is today, and Akins
admits she knew nothing about it. When she voiced her hopes her autistic sons
could learn to read and function independently, doctors warned her those
expectations would never be met. Despite those warnings, she set out to prove
all things are possible through God.
Laced
with humor and compassion, A Pair of
Miracles is the heartwarming story of the Akins family’s journey of raising
Isaac and Isaiah. However, the book is more than a moving biography from a mom
on the front lines. It is a powerful tool, full of practical help for parents,
educators and church members working with children who have intellectual
disabilities, speech impairments and other limitations on the autism spectrum.
It is also a challenge to the church to welcome and celebrate all of its
members, no matter their abilities.
Q: A few months after you brought
your adopted your twin sons home from the hospital, you learned they were born
with Fetal Alcohol Disorder. How did they behave differently from other
children, and what clued you into the fact something else might be wrong?
The
twins screamed constantly and were very, very difficult to calm. They had an
amazing stamina when it came to screaming and could scream for hours. They
would start screaming even before they opened their eyes to wake up.
Doctors
chalked this all up to the twins being premature. Because they were premature
and born to a “low-functioning” mother, they didn’t really give us any other
explanation. It was a given in their mind that due to their prematurity they
would have unusual behaviors. At three months they were diagnosed with
microcephaly (their skulls too small for their brains), and it was assumed,
because of their facial features and small head circumference, it was due to
fetal alcohol disorder. Fetal Alcohol Syndrome Disorder (FASD)is difficult to
diagnose(at least it was back then) because you need to have the mother’s
admission that she drank while pregnant.We didn’t have that admission,but the
twins are textbook cases of the syndrome.
When
they were diagnosed with microcephaly, I was determined they wouldn’t keep that
diagnosis. I laid my hands on their heads every single time I touched them and
prayed their heads would grow. God answered that prayer. They have
regular-sized head circumference! Truly a miracle. If they didn’t, their
cognitive functioning would be much worse.
Q: How old were the boys when they
were diagnosed with autism? How much did you know about autism before their
diagnosis?
The
twins were fouryearsold when they were diagnosed, but I knew something was
wrong years before the official diagnosis. Not only were they a textbook case
of FASD, but they are of autism as well. It’s important to remember that autism
can have co-morbid diagnoses. In other words, having autism doesn’t mean you
can’t have other diagnoses as well. Did the FASD cause the autism? We have no
way of knowing.
When
the boys received their autism diagnosis, the only thing I knew about autism
was from the movie Rain Man, which
means I knew nothing! Plus,autism is different in every individual.
In
1997-98, the only thing I had was a rickety old IBM computer someone had given
me. It barely worked and was one of those with the green screen,but I used it
to hook up to AOL. (I can still hear that dial-up sound in my ears!) Once online,
I connected with an amazing crew of mamas and grandmas who also had children
with autism. It was those women who led me to resources. I have to tell you, we
were on the cutting edge of research in those days,butas far as early
intervention was concerned, it was very difficult to get anyone to listen to us
regarding what our children needed to have to succeed. It was very, very hard
to get people’s attention. If it weren’t for those women, I don’t know how I’d
have survived those early years. They were a lifeline.
Q: What was the doctors’ prognosis
of how the boys would be able to function as they grew and matured? How did you
work through the grief that followed the news?
The
working title of this book was Pie in the
Sky. I was told by a psychologist my hopes and dreams for them to function
independently was “pie in the sky thinking” and I “better get over that right
now.” I never went back to her. The boys have done much, much more than anyone
thought possible.
For
instance, that particular doctor told me they’d never read, be able to live
independently or speak. Other doctors simply didn’t know and told me I would
have to wait and see. Only one doctor I worked with was sympathetic to me, and
it wasn’t anything he said, but it was how he treated me with such kindness and
respect when we’d see him. I wish there were more pediatricians like that
today. He never gave an opinion about the future. He just helped me get through
each medical crisis and was very encouraging to me. He made me feel like I was
competent.
Today
the twins walk. They talk and understand everything that’s said to them. Their
speech and language is a little difficult to understand at times, but they
function well enough to send text messages and talk on the phone.
I
worked through my grief about their diagnosis in stages. In some ways, I
already knew something was wrong. Developmental pediatricians were tracking
their physical development, and we could already see some things about their
development weren’t right, such as the size of their heads. I also knew the way
they reacted to sensory input was way off, and they weren’t meeting their
developmental milestones on time, such as sitting up, walking and talking.
Still, even though I knew something was wrong, I went through all the normal
stages of grief — from anger to acceptance. I still do go through some of the
stages. All parents with special needs kids deal with grief on a day-to-day
basis. It cycles through us at various times depending on what we’re dealing
with. Mostly, though, I’m so proud of my guys. They’ve worked hard to get where
they are today.
Q: When the boys were young, in a
meeting with your pastor, he asked, “Do you think you missed the will of God
when you adopted them?” Even doctors made hurtful comments to you about your
boys. How did you respond?
Well,
I’d like to say the conversation doesn’t still bother me, but it does. I do
realize some people just don’t “get” adoption and disability issues. I’ve
forgiven the pastor and those doctors,but just thinking about those
conversations makes me shake my head with incredulity. Some people don’t have
filters. They just say whatever they’re thinking.
I
was furious, of course, when those conversations took place. I never responded
negatively or rudely to them at the time, but I did stew on what they said. I’m
the type of person who when you tell me I can’t do something or can’t make
something better, it fuels me to prove you wrong. I used those conversations to
motivate me rather than discourage me.
Q: You talk about bargaining with
God and even encourage readers to “wrestle with God” in difficult times. What
were some of the questions you had for God in the early years of raising Isaac
and Isaiah?
I
would actually pray for forgiveness from God for wanting to adopt because I sometimes
worried about what it was doing to our family. It definitely took away the
tranquility in the house. I am a huge peace-lover and maker. I crave quiet
spaces. I also asked my husband to forgive me for pushing for adoption, but he
never once wavered or questioned our decision. That helped me a lot in the
twins’ younger years when they were so, so hard to care for.
I
still have a lot of questions for God where disabilities and pain in the world
are concerned. However, I do know the devil hates humans and wants them to
suffer because we are created in God’s image. Still, God’s ways are not our
ways, and I truly believe He will use our struggles for His purpose and glory
if we let Him.
Q: What have your boys taught you
about God, and how has your faith grown by being their mom?
The
boys have taught me more about everything in life and especially about God.
I’ve never seen greater faith than theirs. I’ve never seen joy such as theirs. The
twins have amazing faith. To me, they’re spiritual giants. Their faith in God
inspires me every single day. Their spirits aren’t at all disabled. Their
spirits are as healthy as yours and mine and probably even more so because of
their childlike faith.
They
are very tender-hearted toward the Lord, and they know to turn to Him for help.
Just a few days ago we had a situation that made Isaac anxious. He asked if we
could all pray,so we stood in a circle and prayed. He sobbed like a baby,
crying out to the Lord for help. That is faith. Without faith it’s impossible
to please God (Hebrews 11). Their faith amazes me. I am eager to interact with
them in heaven when they are completely healed and to talk to Jesus about them
and how their prayers affected heaven. They are true prayer warriors. When I
need prayer, I ask them to pray because of their great faith.
They’ve
taught me what’s important in life. I’m not as materialistic as I might have
been otherwise because autism doesn’t allow you to have breakables. Doors get
kicked in. Walls get holes in them. Furniture gets mauled. They’ve taught me
not to sweat the small stuff. My tolerance for imperfection is extremely broad
because of them. Societal constraints don’t worry me. Our yard might not be the
prettiest in the neighborhood because we’re so busy supervising the twins, but
the love in our house is immeasurable. It’s far from perfect, trust me, but
when I focus on the blessing these boys are to others (they love serving
people), I’m deeply humbled. I wish I could be as sweet as they are.
My
faith has grown as theirmom because what the world said could never happen, God
made happen. When doctors told me they were microcephalic, I refused to accept
it. As I mentioned earlier, I constantly laid my hands on their heads and told
them to grow. They have normal-sized heads now. Doctors said they’d not walk,
butthey walk. Doctors said they wouldn’t read or do much independently,and with
God’s grace we’ve proved them wrong.
Q: Tell us about Isaac and Isaiah
today. In what ways are they able to function independently in ways the doctors
never expected? In what areas do they still need help?
They
do so many things on their own! They have a golf cart they use for
transportation to their part-time jobs and other places in town. Fortunately,
we live in a community that allows it. They use their smartphones and iPads to
communicate and read things. They attend church and help with various duties
there. Isaac helps with the sound system, and Isaiah loves helping in
children’s church. They are amazing helpers. They love helping people.
The
twins will probably always need to live with someone who can protect them from
being taken advantage of. They have a difficult time counting money, so it’s
easy to cheat them. They can also be talked into doing things, as they are
quite naïve and gullible. They have dual-diagnoses of fetal alcohol disorder
and intellectual disabilities, so that makes dealing with them a bit more
involved. They still need to have reminders for daily self-care and function at
about the level of an 8-to11-year-old. They still need to be prompted to do
their daily chores (don’t we all?) and so forth.
Learn more
about A Pair of Miracles at www.KarlaAkins.com.
Akins is also on Facebook (KarlaKAkins) and Twitter (@KarlaAkins).
1 comment:
Thank you for sharing and offering encouragement to other, Karla. I've started reading A Pair of Miracles. Blessings
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