Christa and her girlsToday 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.
In those first moments when you found out the initial diagnosis, how did you react? And how did that reaction change over time?
Because it took awhile for it to "click" in our minds, our experience seemed confusing and drawn out. I just remember that when Sophia was 2 and Danielle was 5, it was pretty much impossible for Don and I to get into their world. We just thought, all that time, that we were completely inept parents. Not only would they not play with us, but they would have extreme meltdowns in public, and I remember going nowhere except to church (which was always a safe place for us) or to school. It's a very isolating disease.
After our third daughter was born, I actually went through what I now understand to be a period of depression. A lot of that had to do with feeling helpless. By that time Danielle had begun to experience such severe OCD behaviors that we were literally prisoners within our own house. So once Sophia was formally diagnosed, in my mind it was like, "so THAT'S what all this is?!! "
What are your daughters' exact diagnoses? And what do those diagnoses mean in laymen terms?
They were both diagnosed with Autism. It's under the category of a Pervasive Developmental Disorder. In layman's terms, it's even difficult to describe because every individual's symptoms are somewhat different. But there are many things that come with it, including (but not limited to) auditory processing challenges, sensory processing issues, speech and language deficits, behavioral challenges, and psychological challenges. Some of these kids "look" like they are typically developing, so it's hard for an outsider to not judge a perfectly healthy looking 9-year-old girl when she is throwing what looks like a temper tantrum -- when in actuality, she's physically unable to process the verbal, visual, and sensory input she is receiving. It's not a matter of "won't" as much as "can't" with these kids. Even as a parent, it took me a little while to get that.
What are 3 things you wish someone would have told you about autism that you had to learn on your own?
I'm not sure anyone can tell you about autism unless they've lived through it. However, I would like to make other families more aware not only of the resources (support, advocacy, information, etc.) available, but also make them aware that they need it! For the longest time, I did not see our family as being candidates for in-home support programs. This is because my kids could feed themselves and could walk around, etc. Because I had no prior parenting experience, I really had no idea how much help I needed. Thankfully a teacher pointed it out to me, and it changed our lives.
Oops, I just realized I didn't answer your question....
- "Your child probably has autism."
- "You need help!" (I would have gotten help much earlier.)
- "Kids can recover from autism."
What or who has been your greatest resource for information and support during this time?
Other parents of kids with any type of special needs have definitely been the biggest resource of information. In addition, we found some amazing holistic practitioners who have been a wealth of information to help unravel the puzzle of autism from a medical perspective.
Kids are making full recoveries all the time, and I wish this was more widely publicized. The problem is that the powers that be have so much to lose in the way of money and reputation if these stories make the headlines. Also, the pathway to recovery is extremely costly and the most arduous journey you can imagine. But then again, so is living with the disability. My personal position is that I just want to encourage and support every family, no matter how they chose to deal with the situation. Everyone is on their own journey, and parents of kids with any special needs have no bigger fan than me.
What’s been the most challenging part of dealing with two children with autism?
The work can be very overwhelming. The "odds" seem insurmountable at times. You feel at times as if hell has literally set up shop in your house. But I would say the grief over "what could have been" or "what should have been" is by far the hardest part. Each person has to come to that point at their own time. And for me it's been in stages. But I remember when the first deep wave of grief was released, I felt like it was also a cleansing. You are jumping through so many hoops to try and manage or cope, and those hopes are moving targets. If you're not careful you can lose yourself, lose your marriage, your sense of who your family really is. 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.
Tell us something that makes each of your girls special or unique.
Danielle has always had a great sense of humor. She is also quite responsible. I can't remember her ever losing a single personal item, which is completely unlike me. She loves to laugh and is extremely loyal to her friends.
Sophia is completely into her hair. She is only seven but can fix her sister's hair, her dolls' hair, her own hair. She also has become very sociable and loves being on her softball team for the first time ever.
One thing I appreciate about both of them is that they love each other and their other two sisters very much. They all look out for one another.
Finally.... The debate around the cause(s) of autism is very heated right now. What do you think causes autism?
In my opinion, autism is a condition in which many factors come together. Here's my somewhat educated theory in a nutshell. Every family line has distinct genetic vulnerabilities, each blood type has vulnerabilities, the male and female sex each have their own vulnerabilities, etc. Environmental exposures will exploit each genetic vulnerability. Environmental triggers would include the following: things that are in our food, things that are in the air, things passed from the mother in the womb, EMFs, words that are spoken, thoughts and intentions, the way in which we do immunizations, etc. These factors all come together to create "the perfect storm." What manifests as autism in one individual may very well manifest as diabetes, Crohn's, asthma, or cancer in another individual. We must stop treating symptoms and start addressing root issues. If we would be more discriminating about what we put in and on our bodies, as well as what we speak and listen to, we would see diseases be healed on a more regular basis.