An Exclusive Look at AUTISM with Diane Dokko
Encouragement speaker Derrick Hayes gives an AUTISM Interview by asking six questions through each letter in the word AUTISM to give readers insightful perspectives from parents, experts, entrepreneurs, and other leaders in the field.
Today’s AUTISM Interview is with Diane Dokko who is a San Francisco Bay Area native who has been serving for over 25 years in bi-vocational church leadership and serving the disabled community. Diane’s first son was diagnosed at age two with autism and ADHD/ADD in 2004 which triggered profound personal, professional, and spiritual crises. In 2008, she began serving as a special needs ministry consultant and in 2012 launched an online ministry to reach out to special needs families. Diane and her husband, Eddie, live in the heart of Silicon Valley with their two young sons, Jeremy and Justin.
A is for Awareness
When and how did you first become aware that something was different?
My husband and I suppressed a nagging sense of “something’s not right,” from 18 months. As an uncle and aunt and longtime Sunday School teachers, we had plenty of experience with children. But you have different eyes for your own child. Jeremy had missed several developmental markers. But we kept justifying that we were acting paranoid, or that he would catch up. When our fears and dread became too oppressive to ignore—coupled with the delicate intervention of close friends who expressed similar concerns—we finally had him assessed. Jeremy was diagnosed at 2.5 years.
U is for Unique
How has this experience been Unique for you and your child?
I used to think having a child with autism was a curse and a burden. Nobody signs up for disability. No one wants their child to be “special” in this way. We didn’t volunteer for autism; we were drafted. But over time, autism-parenting has been the sharpest tool in heaven’s drawer to remap and remold our family’s emotional, spiritual, and relational DNA. Jeremy has driven us to love, cry, fight, pray, hustle, and rejoice to an extent we’d never have known, apart from autism. We may not have gotten the child we wanted; we got the child we needed. Now, being an autism family is not something we “have” to be, but get to be.
T is for Tools
What tools are there now that were not there at the beginning that could help other parents?
Our son was diagnosed in 2004. At that time, the assessment process was wonky and unclear. The process has become much more streamlined and efficient. However, I’d say the biggest asset parents have today is the Internet. While “no two individuals with autism are alike,” the web is the lingua franca to connect isolated and floundering parents to helpful resources, and to each other (the best resource: other savvy autism parents!) Virtually everything and anything, from researching interventions to online parent support groups, is just a Google search away.
Click here to find out more
I is for Inspire
As a parent when you look at your child or children what inspires you?
Ironically, the biggest challenge our son has (a lack of social skills and communication) is also what I admire most about him. He lives in complete freedom, not caring what people think. In contrast, as a neurotypical, I waste so much mental energy being consumed with “What will people think?” Trying to fit in with expectations, keeping up appearances/reputations, and striving to earn people’s approval is draining. Jeremy couldn’t care less about such nonsense. He lives in freedom, joy, and simplicity, unencumbered to love, live and be exactly who he was made to be.
S is for Support
Are there things you struggle with or have struggled with and what types of support do you still need?
Accepting help, much less asking for it, has been one of the most difficult parts for me. The chronic demands and challenges of autism can be overwhelming. If it takes a village to raise a typical child, then it takes a nation to support a family living with autism. Guilt and shame have prevented me from accepting offers of help. From childcare, domestic help, and even assistance in managing the MOUNDS of paperwork, building a support team is mission-critical to the marathon of autism parenting. Parenting is leadership. People usually want to help but don’t know-how. Tap into this and say “YES, thank you!” Build a team around you, delegate that which doesn’t have to be you, so you can focus on that which only you can do. I’ve learned the hard way: Let there be no autism-mommy-martyrs.
M is for Manage
What keys to success can you leave with parents so that they can better manage their day to day efforts?
As flight attendants advise before takeoff, “Put your own mask on, first.” Parents are no good for children/families if we are burnt out or dead. We must take care of ourselves, first. Resist the irrational (yes, irrational) sense of guilt or selfishness that hinders self-care. Prioritize rest, respite, and your marriage partnership.
Emotional and Practical Supports
Families like ours need both the understanding and emotional support from fellow autism families, as well as practical help. Both categories of help may not come from the same source. Other autism families may “get it.” But because they face similar challenges, are often limited in how much they can help. In contrast, typical families may not “get” what we go through. But they are usually better positioned to come alongside us with the practical supports our families need. Appreciate and tap into both, appropriately.
Autism is a long-game. We need health, wholeness, and mobilization on all fronts, within ourselves and leveraging the community around us, for the long haul.
Diane is the author of the book, Unbroken Faith: Spiritual Recovery for Special Needs Parents. When a parent hears that his/her child has a disability, hearts, and hopes are often broken. But faith doesn’t have to be. In Unbroken Faith, Diane comes alongside you as a fellow special needs parent to help you reconcile the premise of a good God with the devastating realities of raising a disabled child.
She courageously articulates deep-seated, unspoken doubts and fears you may have but are afraid to voice: Will my child still have a full life? Can I do this? Where is God in all this? As you are adjusting to your new normal, Kim’s biblical-based encouragement will help you understand that you are not alone, that God gets it, and that God’s Word is entirely relevant to the raw and messy yet hallowed spaces of special needs parenting. For more information please visit https://www.dianedokkokim.com/.
This article was featured in Issue 79 – Managing Everyday Life