From feeling hopeless at diagnosis to being excited for her future, Ainsley’s mother shares their family’s journey.
Yesterday was a breakthrough day for 8-year-old Ainsley Rheaume. While her mother was picking her up from the Language and Learning Clinic at Marcus Autism Center, another mother asked Ainsley what her name was. Using her communication pad, Ainsley was able to respond, “My name is Ainsley.” But she didn’t stop there, “What’s your name?” she asked the woman.
“Taking it to that next level, not just answering but being able to ask someone else’s name, unprompted, that blew me away,” says her mother, Mary Mullikin. Indeed, this was a major milestone for Ainsley, who was nonverbal when she started in the Language and Learning Clinic
less than one year ago.
“The Language and Learning Clinic has been absolutely life changing for her. Before, she didn’t have any way of communicating with us. It was frustrating her and affecting her behavior and all our lives,”
says Mary. Now, she’s actually saying words like hi, bye and mama, and short phrases like open door.
How can you tell what autism looks like in a toddler?
“I didn’t realize anything was off with Ainsley,” says Mary. But, the family’s pediatrician referred Ainsley to a developmental psychologist to have her tested for autism spectrum disorder (ASD). Mary assumed the pediatrician was mistaken. “She was a great baby. We were happy,” she says. “But, I did start to admit she didn’t have great eye contact, didn’t respond when her name was called and didn’t really try to communicate. Still, I thought she just wasn’t ready yet.”
So, Mary was shocked when Ainsley was diagnosed with autism at age 2. “I thought my life was over,” recalls Mary. “I didn’t know anything about autism, but I was worried about what it would mean for her and what people would think of her.”
As Ainsley got older, she started having issues with severe behavior
. Going places, even their local grocery store, was a challenge for Ainsley. “Half the time I didn’t know what to do,” says Mary. “In the car, she’d scream and climb out of her car seat. At the store or playground, she’d fall on the floor, pull her hair and try to kick herself, or me. It was overwhelming.”
The family finds hope at Marcus Autism Center
The family heard about Marcus Autism Center from a friend. When Ainsley started school, she was struggling to adjust, and the family had trouble working with the school. But undaunted, Mary came to workshops at Marcus Autism Center determined to learn as much as she could about what Ainsley needed and how she could help her.
It was when Mary attended the center’s two-day Toilet Training Seminar
that she got her first look at how Marcus Autism Center uses protocols and data sheets to help care givers with interventions.
“I didn’t get how I was going to potty train a nonverbal child,” recalls Mary. “After the seminar, I called one of the doctors at Marcus, and he was so patient and answered my follow-up questions. They guided me through, and I did exactly what they said—line by line—and my kid was potty- trained in three days.”
Shortly after, Ainsley participated in the center’s Feeding Program
. While Ainsley wasn’t underweight, eating was always difficult for her. She had severe behavior at mealtime and little to no interest in food, which took a big toll on the family’s quality of life.
“I remember coming home and crying because she started off by refusing an empty spoon and throwing strawberries at the doctors,” says Mary, who laughs about it now. “I was sure it wasn’t going to work, but now Ainsley’s a great eater. She still does protocol meals at school, and Marcus has been great with helping us work with her school around all that.”
Now, Ainsley is a patient in the Language and Learning Clinic, where she’s learned to use a communication pad (a smart pad with app software) to help her communicate. But she’s also added more than 25 words to her spoken vocabulary and is constantly saying more. Just last week, she walked her mother to the refrigerator and verbally asked for edamame—a word not available on her communication pad.
Gaining the ability to communicate has helped Ainsley relieve her frustrations and led to a sharp decrease in her problem behaviors. Now, she’s able to go to the grocery store with her mother and ask for what she wants—a little thing for most, but a major victory for Ainsley.
What this autism mom wishes others knew
“It took me a long time to accept Ainsley’s diagnosis and be OK with it,” says Mary. “But I wish I could tell other moms who might just be learning about autism that there’s still so much to look forward to.”
“Today, Ainsley is thriving because of the work of the people at Marcus. I have so much hope for her future.
And, I’m really loving getting to see Ainsley learn, seeing her excitement about being able to learn,” says Mary. “I just really, really love seeing who she is.”