Thursday, August 10, 2017
Mother of sons with autism offers encouragement and reassurance
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 four years old 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, but as 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 their mom 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, but they 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- to 11-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).