Autism is different in every person
Part 2 of an
interview with Karla Akins,
Author of A Pair of Miracles
According
to the Centers for Disease Control and Prevention, an estimated one in 68
children has been identified with an autism spectrum disorder (ASD). Although a
growing number of parents face similar circumstances, many still feel isolated
and alone. In A Pair of Miracles: A Story
of Autism, Faith, and Determined Parenting (Kregel Publications), author
Karla Akins, the mother of twin sons with autism, offers encouragement and
reassurance.
Q: Who will benefit from reading your
new book, A Pair of Miracles: A Story of Autism, Faith, and
Determined Parenting?
I
hope families and caregivers will be encouraged by reading about our journey
and might gain a few ideas on how to work with their child. I also hope they
will feel like they’re not alone in the struggle. I know I like to read books
that validate what I’m feeling. It’s always good to know you’re not the only
one in the trenches, fighting the good fight of day-to-day survival with
autism.
I’ve
included a generous section on how to work with your child. These include ideas
that worked for us but also some evidence-based interventions proven to work
for a lot of children with autism. Since I’m also a special-education teacher,
I hope the book will help educators understand what families deal with. I’ve
sat on both sides of the IEP table. I know the stress of advocating for what’s
in the best interest of my child, but I also know how it feels to be an
educator. Educators and parents need to work as a team, and the book gives
great tips on how to do so.
Q: What misconceptions do most people
have about autism? What would you most like your readers to understand about
autism?
I
wish more people would understand autism is different in every person. It’s a
spectrum disorder, which means there’s a wide spectrum people fall on. I have
friends with children who have a severe form. Their children are grown now and
still can’t toilet themselves. I have friends with children who have children
who are considered high-functioning because they have high IQs, but the child
can’t shower independently without guidance. It’s a neurological disorder, not
a behavioral or psychological problem, and it manifests in a myriad of ways.
When you’ve seen one child with autism, you’ve seen one child with autism. It
will look different in another child.
Q: For parents who are walking the
road of raising children with autism, what advice do you offer for becoming the
best advocates for them when it comes to medical care?
Trust
your God-given instincts, and don’t second-guess yourself. God gave those
children to you, and He will equip you to do what is right if you seek Him for
answers and wisdom.
Put
everything in writing when you have a concern that isn’t being answered. Do
your research to make sure any treatments you desire for your child are based
on evidence and not trends.
Q: What are some of the other areas
you discuss in the book for living life with autistic family members?
I
really want parents to take their children out in public and de-sensitize their
kids with autism to uncomfortable situations. Yes, it’s inconvenient, but you
do your children no favors by hiding them away at home. Society needs to see
them, and the child with autism needs to be exposed to the sights and sounds of
the world so they can learn to cope.
I
talk about how difficult mealtimes were. They were a nightmare when the twins
were small. Food was thrown everywhere, and a lot of screaming went on. Looking
back, now I can see the screaming was from anxiety, but I didn’t realize it
then. We learned the twins ate better if they ate in the dining room while we
ate in the kitchen. We all had to learn not to take it personally. It was just
what it was. At that time, our kitchen had a cut out in the wall to the dining
room. We’d put two vinyl table cloths on the floor under their high chairs and
let them go at it. It was the only way we could eat and have a conversation.
Every meal ended up with them painting themselves head to toe with food. They
couldn’t eat solids because they had poor motor control, so I pureed everything
for years.
I
also discuss the need for a network of support because of how stressful it is
to raise a child with autism. I learned I couldn’t care for the boys without
help, and I needed to admit it.
Q: How were your other children
impacted by their brothers’ autism? What recommendations do you have for
parents to make sure their other children don’t feel overlooked?
If
I had my kids to raise all over again, I’d have been more deliberate in
scheduling one-on-one time with each of my children. I think we were too busy.
I try not to second-guess myself, but it’s hard not to. What parents absolutely
must not do is depend on their other children as caregivers. Yes, definitely,
they can help out because that’s what families do. However, every child needs
to feel they are a child and sibling, not a parent.
Q:
Can you share some of the basics teachers at church and ministry volunteers
should know when working with a child who is autistic or has disabilities? What
tools are offered in your book?
My
book has a great appendix that answers questions about working with people with
autism. I give a lot of great tips on how to respond to different behaviors and
how to motivate kids with autism.
Remember
all children are unique, no matter what their ability or diagnosis. Also
remember a diagnosis is not who they are. They are children and people first.
They just happen to have a label.
Churches
can embrace families living with disabilities by providing one-on-one aides in
the child’s classes so the parent can attend their own classes. This also
allows the child with disabilities to attend church with children their own age
too.
I
offer training to the teachers and those working in the children’s department.
I love giving training seminars. People can contact me through my website. I
also do one-on-one online consultations as well. Folks can sign up on my
scheduling page.
Q: You include sections with scripture
to meditate on. What verses have meant the most to you throughout the years?
Psalm
139 is my favorite scripture passage because it talks so much about how God
knew us before we were born and how He is always with us.
I’ve also leaned a lot on the
book of Job for inspiration, especially Job’s attitude in Job 13:15 (KJV):
“Though he slay me, yet will I trust in him: but I will maintain
mine own ways before him.”
Job is saying, “I trust God
no matter what, but I’m still going to be bold in going to Him.”
There are many things that
happen I don’t understand, but this verse keeps me praising instead of
complaining. It also gives me permission, in a way, to wrestle with God about
the hard stuff that goes on in my life. It also helps me realize I can trust
God, even when things don’t make sense. He’s in control.
Learn more about A Pair of Miracles at www.KarlaAkins.com. Akins is also on Facebook (KarlaKAkins) and Twitter (@KarlaAkins).
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