Our journey with autism

This beautiful boy is one of the many faces of Autism Spectrum Disorder.

 

For 6 months we have waited on this diagnosis - or, more accurately, over 3 years. In that time I have debated whether or not his story is mine to share. Will he hate me later? Is it unfair to assign him this label, when many people would never detect his autism on their own? In the end, I have decided I cannot not tell his story. To hide his diagnosis would be the same as hiding my eye color. Or my loathing of playing sports. Or my passion for books. Autism is not a shame. It is a way of sensing and processing the world that looks different from yours and mine. And I have come to realize the world is a better, richer, smarter place for the creative and creating minds of autistic individuals.

If I hide Henry's diagnosis, I add to the confusion, misunderstanding, and myths surrounding Autism Spectrum Disorder. May God convict me if I ever do such a thing. I would love for you to follow along as I try to document the joys, sorrows, and triumphs of Henry's story. This blog will not become a home for autism awareness, but I want to record this story for me. And for him. It is part of our family. Just know his story has only begun. He has a lifetime of living to do.

We knew something was, let's say, not quite right when he was 18 months old. His speech didn't seem to be coming along as quickly as it should. Our doctor continued to say he was fine, but in June 2011, when Henry was 23 months old, we had a speech evaluation at UNC Hospital to determine if he qualified to receive speech therapy. To my great shock, his scores were too high to qualify. The therapist did see why we were concerned, and she suggested some activities to encourage his speech, recommending we have him re-tested in 8-12 months.

I tried to tell myself this was good news, but to be perfectly honest, I felt defeated. My mommy instincts (otherwise known as the Holy Spirit) told me something was wrong, yet the professional sent us on our way. What else could I do?

In March of this year we had Henry re-tested, but this time we chose to use the local Child Developmental Services Agency (CDSA). Some background here: Every child in America is guaranteed the right to a Free and Appropriate Public Education. For children younger than 3, this means the child can be tested free of charge to determine eligibility for early intervention services. The evaluation is comprehensive, meaning the child is observed in all areas of development. If the child is found eligible for therapy, those services are then paid for on a sliding fee scale. When the child turns 3, the services become free through the local public schools. In 2011 we believed an expensive evaluation at UNC was the best option. When we paid a lot of money to receive a response I did not like, we chose CDSA for our re-test.

The psychologist and caseworker assigned to Henry's initial evaluation were gifts from God. After spending more than 2 hours in our living room with Henry, watching him play, testing him, and listening to him spell his name, say the ABCs, and count to 20, the psychologist told us: "Well, I can tell you his scores aren't going to qualify him for speech therapy. He has too much language. But I see what you're seeing. Henry is a mystery. I don't know what's going on here, but I am going to recommend he receive both speech therapy and developmental play therapy, based on my clinical opinion."

Then I began to weep. Someone understood. I was validated. Thank God, someone was willing to say, I won't let your son fall through the cracks. At the same time, I was validated. In other words, something was wrong.

That first appointment was the beginning of a hailstorm. Before the psychologist left, she told us we might want to keep autism in the back of our minds and keep an eye on certain behaviors. She made very clear that she was not diagnosing him, but merely suggesting it was something his therapists would want to consider. She may as well have diagnosed him. What parent wants to hear the dreaded A-word uttered in their living room by a psychologist observing their child? No one.

As if we did not have enough emotions to deal with, the devil began attacking us in every possible way he could conceive. Those stories, however, are tangential and not necessary for Henry's story to play out. I merely want to note that our world had just been rocked in a big way. We were about to come face to face with information overload, fear, doubt, wonder, confusion, frustration . . . and more joy than I describe.