Our Family’s Autism Journey

If you’ve been following me for a while, you know that Robby and I have a little boy named Gordon. You may have seen pictures of him holding caterpillars in our yard or snuggling with our cat, Penny. He’s also really good at basketball, knows his ABCs, and is now potty trained (woohoo!).

But what you don’t know—what we haven’t been ready to share until now—is that Gordon has Autism Spectrum Disorder.

Although our family’s Autism journey is just beginning, I freely admit that it’s been extremely difficult, emotionally and practically. I feel compelled to share what we’ve learned with other parents, to provide some comfort and encouragement to others walking this same journey. At the same time, Robby and I are very private people, and we’re extremely protective of Gordon. While we’ve agreed to share what we can to help others, there will be some things we choose not to share for Gordon’s privacy.

For over a year and a half, we’ve known that something was “off” in Gordon’s development, and we feared that Autism was the culprit. We sought early intervention and went through the stressful, time-consuming process of obtaining a diagnosis. Finally, just a few weeks ago, Gordon’s results came in and Autism was confirmed.

In the beginning, Gordon’s main issues were a language delay and some behavioral issues. We reached out for help and were told to fill out a questionnaire to see if there were any red flags for Autism. (I’ll share that resource and others here in upcoming weeks.) When red flags were, indeed, identified, we were in denial. “No, that can’t be right. Gordon is so social…when he’s comfortable. He makes great eye contact. He’s so smart! This test doesn’t accurately reflect who he is.”

Later, Gordon was diagnosed with Childhood Apraxia of Speech (CAS), a rare disorder that makes it hard for Gordon to say what his brain wants to say. Although this news was difficult to absorb, it did give us a bargaining chip: “It’s not Autism after all,” we said. “It’s just this speech disorder causing Gordon to be frustrated.” Add Covid isolation on top of that—and the pervasive use of masks everywhere—and there was plenty to blame for Gordon’s delays.

Once Gordon aged out of Early Steps (Florida’s version of early intervention), he started services through a local therapy practice. Unfortunately, our insurance refuses to cover speech therapy unless the child has cleft lip, cleft palate, Downs Syndrome, or Autism. I can’t tell you how frustrated and angry I have been over this! I even wrote a letter to the Governor of Florida and my representatives outlining this issue and begging them to change the laws to require insurance companies to pay for speech therapy for these most vulnerable of people. Although one representative did try to help, nothing has been done to force companies to do the right thing.

In the end, this insurance issue forced us to pursue an Autism evaluation. After many months of unreturned phone calls, doctor’s visits, multiple referrals, two out-of-town trips, and countless temper tantrums, we finally received the diagnosis last month. By that point, we were confident that Gordon would land on the spectrum and feared only that the evaluators would miss it and fail to give him a diagnosis. After years of being “different” and “possibly on the spectrum,” we knew that being undiagnosed, and living in a gray area, would be much worse than a clear, recognizable diagnosis. We had finally moved into acceptance.

At some point over the past year, I realized that we were going through some of the stages of grief. We had not lost our child (thank the Lord), but we did have to reconcile our reality to what our initial dreams had been. Going on vacations, going out to eat, even going to the store had their challenges. Friends we had when Gordon was a baby stopped calling when their kids’ development took off and Gordon’s was delayed. Our weekly schedules began to revolve around therapy appointments and treatments, and Gordon’s therapists became his friends.

All of this takes a toll on a family, so it’s important to find resources to help. Fortunately, there is one book that speaks directly to this issue: Not What I Expected: Help and Hope for Parents of Atypical Children by Rita Eichenstein, PhD. If you have a child that is acting differently—whatever the suspected cause and wherever you are on that journey—get this book! It will explain the grief process, how it applies to accepting your child’s differences, and how to move forward from grief to acceptance.

As parents, we are our child’s advocates, cheerleaders, and guides. When our children are going through something difficult, we have to move beyond denial, bargaining, anger, and other emotions so we can step forward and do what we need to do for our kids. We simply don’t have the luxury to remain “stuck” in our own emotions.

I learned yesterday that April is Autism Awareness Month. How fortuitous that I had planned on sharing this information with you today! It seems like confirmation that sharing our journey, and what we’re learning along the way, is better than keeping this a secret. After all, Gordon has nothing to be ashamed of. He’s a beautiful, bright little boy with his whole life ahead of him, and we have so many wonderful memories to make along the way.

I plan to share more resources here, so please stay tuned and sign up for my newsletter so you don’t miss anything. In the meantime, give your little one a hug and tell him the truth: that you love him more than anything in the world, no matter what.

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