Autism parenting is a labor of love
Pageland Progressive-Journal - 4/12/2017
Alanna Moore, a wife and mother of four, said she knew something was not right with her youngest child, Rylan, when he was just an infant.
Now 10 years old, Rylan was diagnosed with Autism Spectrum Disorder, global developmental delay, Attention Deficit Hyperactivity Disorder and sensory processing disorder at the age of three.
"I knew right away, within days of him being born, that he was just different," Moore recalled.
At seven months, Rylan was not sitting up or holding a bottle or rattle, and he could not follow you with his eyes, Moore said.
The pediatrician checked him out and told Moore to bring him back to the office at nine months. It was still much too early to diagnose him.
Rylan did not roll over until he was one year old, and he did not walk until he was two. During that time, he was going through assessments with BabyNet, Moore said.
BabyNet is South Carolina's interagency early intervention system for infants and toddlers under three years of age with developmental delays or who have conditions associated with developmental delays.
The agency, which is managed by S.C. First Steps' School to Readiness, matches the special needs of infants and toddlers who have developmental delays with the professional resources available within the community.
Its services are provided in everyday routines, activities and places relevant to the life of the family. It is funded and regulated through the Individuals with Disabilities Education Act.
According to Moore, the agency sent a therapist to their home 30 minutes each week for play and speech therapy.
BabyNet also referred Moore and her husband, Jerry, to a developmental and behavioral specialist in Concord, N.C.
They finally were able to take Rylan in to see the specialist after being on the waiting list for a while. That is when he was officially diagnosed with the disorder.
After aging out of the BabyNet program, Rylan started receiving services through CHESCO.
Moore also did research on autism over the Internet, and knew it was not going to get better.
"I had him in every program I could find, as far as Camden and Charlotte, N.C.," Moore said. "I pumped him into anything I could possibly find."
Rylan is still getting services through CHESCO and is in a special needs class at Jefferson Elementary School.
One year, the school tried to mainstream Rylan into a regular classroom, but that did not work out, Moore said.
Having a child in school with special needs is a huge challenge, Moore insisted. She said Rylan has been on different medications, but they have not found one that works well with him.
The local community does not have a lot of activities for children with autism, she said. Because it is a rural area, there is not a big need for such services.
Rylan does attend different camps during the summer, but they are not close by. The family also attends the Special Olympics at Wingate University, where Rylan especially loves to get in the swimming pool.
Moore said her other children, Kaylee and Jillian, who are still at home, have learned to adapt to having a sibling with autism.
"It's a very huge struggle," Moore said. "It's not puzzle pieces and rainbows."
One of the family's major struggles with the disorder is behavioral changes in Rylan, she said.
"He is stuck at the terrible twos," Moore acknowledged. "He has tantrums and very aggressive behavior."
Although Rylan can talk, Moore said he has the intellect of a four-year-old child.
And because Rylan has no concept of fear, the family has to keep everything locked up, she said. They also have to hide knives so he won't hurt himself or others, she added.
Since there are no babysitters available for them, Moore said the family's social life is almost nonexistent. She and her husband try to alternate babysitting sometimes to give each other a break.
Her desire is to see more programs and services available to parents of autistic children in this area.
Despite his aggressive behavior, Rylan is "very affectionate," Moore said with a smile. He loves anything that rolls and has wheels, such as trains, cars, trucks and wagons. He also likes to watch videos of parades, car shows and fire trucks.
According to the Autism Society, children do not outgrow autism. However, studies show that early diagnosis and intervention lead to significantly improved outcomes.
If you see a special needs child experiencing a meltdown in public, remember to show kindness and support for the parents or caregivers of the child, the Autism Society suggests.
During this month, you may also want to show your support for people with the disorder by wearing the Autism Awareness Puzzle Ribbon, a pen on your shirt, or a decal on your car.
National Autism Awareness Month is observed during April to help increase people's awareness and acceptance of the disorder, especially in children.
Each year, about one in 68 children in the nation are diagnosed with autism, according to the U.S. Centers for Disease Control and Prevention.
Autism Spectrum Disorder and autism are terms for a group of complex disorders in the development of the brain. The disorders are identified, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and behaviors.
In an effort to be transparent about living with autism, a Pageland resident shares her story of the struggle she and her family experience every day.