My autism story: Christa has 2 daughters on the spectrum

Sheri Reed

Today we talk to Christa Proctor, mom to four little girls. Her oldest two have both been diagnosed with autism.

About daily life with autism, Christa says, "You are jumping through so many hoops to try and manage or cope, and those hopes are moving targets."

But she also holds great hope for her family, "At the end of the day, you want to be able to look at your family and be so grateful that you are together. Come what may. You have one another."

And hope for a more supportive community, "I just want to encourage and support every family, no matter how they chose to deal with the situation," Christa says. "Everyone is on their own journey, and parents of kids with any special needs have no bigger fan than me."

Read on for Christa's family's story.

Please tell us a little bit about you and your family.

My name is Christa Proctor. My husband Don and I have been married for 14 years, and we have four lovely daughters. Their names are Danielle (age 9), Sophia (age 7), Victoria (age 4), and Annalise (age 1). Both of us are pastors; we live in the suburbs and are very involved in our local community. We also have friends from many different countries and enjoy having these friends stay in our home with their children whenever they come to California. In the last 5 years, since our two oldest were diagnosed with autism, we have slowed down in every area of our life...our schedule, our cooking, our relationships, everything.

Both of your girls were diagnosed with autism. How old were each of them when you first suspected they might have autism? What were those initial signs? Did you get their diagnoses separately or simultaneously and what was that like?

Danielle, our first born, completely stopped talking at about 18 months of age. I remember videotaping her at 15 months of age, and she was saying about 15-20 words very clearly. Because we had no parental experience and, on top of that, were completely unaware of the signs of autism or other developmental delays, we just credited certain behaviors to: 1) personality, 2) our own inability to be "good parents," and 3) each child develops at their "own pace." Hindsight always being 20/20. We look back at such glaring and obvious symptoms. So, with Danielle, we just kept thinking "she'll talk when she's ready" and that she was simply a very strong-willed child (because it was hard to get her to go with the flow).

When Danielle was 2.5 years old, I expressed these concerns to our pediatrician, but his reply was that we should give it another 6 months to determine if there may in fact be a problem. That was such bad advice. Such bad advice. He based this decision on the fact that she "could put two words together." But these were phrases only used when she wanted or needed something..."mo peez" (more please), "go sigh" (go outside), "shoes on."

So when she was almost 3, I followed my gut instinct and called the school district to request an assessment. Long story short and several assessment and therapy sessions later...after about a year, she qualified for a special day class due to "autistic-like behaviors." I always took their words at face value, so it didn't cross my mind that she actually may have autism. I just figured she had some behaviors that were autistic like and that we could address those in order to help her better function in social environments. After all, if autism was in question wouldn't one of the doctors, psychologists, or therapists had actually spelled that out for me? I'd INVITED THEM into my home to TELL me the bottom line.

To sum it all up, it's as if we were groping in the dark to find answers to questions we didn't even know to ask. My recommendation to anyone who is a doctor, therapist, teacher, psychologist....if you're BEING ASKED, just say what it is. One psychologist didn't want to diagnose her with anything specific at "such a young age" (she was 3 by then). One administrator told me that they hate to be the one to bring up the bad news because it offends some families. I can understand not butting in when you're uninvited, but I liken that logic to a person going to the doctor with chronic pain and because the doctor doesn't want to "hurt" them, he simply describes in detail their symptoms without telling them they have cancer.

By the time our second daughter Sophia was 2 years old, we noticed some of the same but mostly different developmental and social concerns with her than what we had experienced with Danielle. When Sophia was 3, she was formally diagnosed with autism, and Danielle was formally diagnosed at age 7. In the meantime, I have to say that they could not have been in a better school program. At the time, it was called "STEPS" and it was offered through the Placer County Office of Education. The girls were in special day classes for kids on the autism spectrum.

More of this Q&A on "The Stir." For complete article, click here