Autism: Up close and personal - part one
Mountain Democrat - 9/24/2017
Editor's note: This is part one of a two part story on autism and how a family is living with three autistic children.
Child rearing is not for sissies.
From the second that little "bundle of joy" enters your world; you no longer come first. Right outta the gate, sleep deprivation and dirty diapers, among other things, become a way of life.
Imagine being a parent of triplets. And now, imagine being a parent with autistic triplets.
Surprisingly, mother Barbara Fakes - who with her husband, Robert, is living just this scenario - sounded somewhat chipper when she answered the phone on a recent Thursday morning, after getting her average five hours of sleep the night before. Fortunately, this stay-at-home mom is sometimes able to catch a quick nap, while her 8-year-old triplet daughters are at school, because there is no rest for the weary once they return home.
Monday through Thursday, the applied behavioral therapists arrive at the house at 3 p.m. and don't leave until 6 p.m. During that three-hour period, the therapists help the autistic girls work on their social and behavioral skills, Fakes said.
"Things that come easy for normal kids, like brushing their teeth, bathing, getting dressed, tying their shoes ? being able to hold a pencil don't come easy for the girls. Most 8-year-olds that I know can take a bath by themselves, but for us it is completely hands on. Morgan and Sophia are a little more sufficient, but that's not the case with Rachel. It's completely 24-7, a nonstop job that never stops," she said, noting, Rachel has severe autism, Sophia, moderate, and Morgan, mild. (Rachel's niece is the only other relative with autism.)
The accurate diagnosis came later
"I first noticed something was different, when they were around 18-months-old. They weren't reaching their milestones ? they weren't pointing at objects, they weren't talking; they were babbling," Fakes said.
At a friend's suggestion, she contacted the Placer County Office of Education to do an assessment, but they did a "developmental assessment," as "autism was not on the radar at that point," she said. The occupational therapist assessed them as being "developmentally delayed," Fakes said.
"So we started receiving occupational therapy and speech therapy at home and that lasted until they were 3-years-old. At 2-and-a-half-years-old, the therapist who was coming to our home suspected they might be on the autism spectrum. So we did an official autism assessment through the Alta Regional Center in Sacramento and they referred us to a psychiatrist, who did a full autism assessment for all three of them. We were told they were developmentally delayed and had Sensory Processing Disorder (SPD)."
When the girls turned 3, they aged out of Regional Center Services, so they moved on to the school district, where they received speech and occupational therapy through a school program, Fakes said. But Rachel was having severe feeding issues.
"She wouldn't eat (regular food). She never stopped eating baby food as a toddler. To this day, she still has a feeding tube and she doesn't eat any food orally at all. You could put a cupcake in front of her and she would just pick it up and throw it on the floor. She never had the instinct to pick it up and eat it. If we did try to feed her something that wasn't a pureed baby food, she'd throw up. She can talk, but her rates of behavior and sensory difficulties are severe," she said, noting, as a result, Rachel at age 3, was enrolled in an intensive preschool program for children with "unidentified disabilities," while her other two sisters went to a speech therapy program, twice a week.
Rachel was 4-and-a-half-years-old when she finally got her proper diagnosis, after a Kaiser pediatrician referred her to a Kaiser Autism Spectrum Disorder clinic. Sophia was 6-years-old and Morgan was just diagnosed in March of this year when she turned 8, due to the fact that her autism is so mild, Fakes said.
"I missed it 'cause I was in denial thinking there was no way all three of them could have autism. Morgan just seemed so normal," she said, adding, "Rachel and Sophia are identical twins, so it's common that if one twin has autism the other identical twin will also. I think it's a genetic thing."
Asked how she felt when she found out her daughters are autistic, Fakes said: "When I first found out about Rachel, I was actually relieved because I knew that an autism diagnosis for Rachel meant we'd be able to have in-home therapy for her again. Because I knew something was wrong; she was barely speaking, she wasn't eating, she couldn't put her own socks on ? she couldn't do any of those things."
But this should be "Mother of the Year" was "devastated" when her other daughters were diagnosed with autism.
"It just really made me sad for them and I felt so guilty that I didn't get them diagnosed earlier and that we missed out on therapy for them earlier," she said. "But, I was so focused on Rachel having severe autism, with the other two I thought, that is not what autism looks like; Rachel is what autism looks like."
See part two for more information on how this family is raising children with autism.