In August of 2020, Emery W. entered this world at the height of the pandemic. The happy baby girl brought much-needed joy to the family during such a difficult year. Although, 11 months later, members of the family began noticing certain mannerisms of Emery’s that caused them concern. 

Ryn W., Emery’s mother, explains, “My mother had mentioned that Emery was not making eye contact. My mother is very much a hyper-focused grandmother, so I kind of brushed it off. It wasn’t until my father-in-law pointed out the same thing that it really hit me in the gut.”

While Ryn admits to being in denial at first, other things Emery did–or didn’t do–were becoming more noticeable. Ryn explains, “My first sign that something was up was she lacked eye contact with me. I would also snap my fingers by her head to get her to turn her head to notice me, or clap a very loud clap, and she would not turn; she would not engage. She would not respond to her name being called. The final was, I would walk into a room after not seeing her all day, and typically, an 11-month-old baby would bounce and smile, reach out to grab you, and be really excited to see you. I would walk into a room and Emery wouldn’t respond.”

THE START OF THERAPY

At first, the family believed that due to Emery’s repeated ear infections that perhaps the lack of response was due to fluid in her ears. However, at an appointment with the pediatrician, the discussion shifted. 

“I took her to her pediatrician and I showed her the snapping by her ear. The pediatrician immediately looked at me and said, ‘I’m going to give you some referrals, and none of this is your fault,’” says Ryn. “The farthest thing from my mind was autism, but I kept hearing words like ‘developmental pediatrician,’ ‘EarlySteps,’ ‘OT,’ and ‘speech therapy.’ I walked out of the room with a long list of people to contact next.”

After waiting two weeks for a referral, Ryn was informed that it could take up to six months, or longer, for Emery to be seen for a consultation with a developmental pediatrician.

While on the waiting list to receive this consultation, Emery went through an evaluation for EarlySteps in order to receive therapy services. EarlySteps offers services to children from birth to age three who have a “medical condition likely to result in a developmental delay, or who have developmental delays.”

Ryn explains that in order for Emery to qualify, she had to fail two out of five categories, or domains, during the evaluation. The domains the evaluation covers include: motor skills, cognitive, social-emotional, communication, and adaptive.

“At the time, I thought to myself, she might fail one. If she fails two, we’ll get services, but maybe she won’t even qualify. When the results came back, I was shocked to know that Emery failed four out of five categories. The only one she did not fail was cognitive. So that was eye opening that she was one, in my eyes, severely delayed. And two, she was a pandemic baby, so was this my fault?” says Ryn.

During COVID, children weren’t experiencing normal life situations. However, many parents are still blaming themselves. Denise Housewright, a licensed speech pathologist with the EarlySteps program who has worked closely with Emery, shares, “There are quite a few parents–COVID or no COVID–who want to blame themselves, and I have to reassure them that we don’t know what caused this right now. I mean, did COVID hurt? Absolutely. But there’s no way, unless there was maybe a stroke in utero or something medical.”

Emery began speech therapy at 13 months old with EarlySteps before starting group therapy at 18 months old at The Emerge Center. The biggest concern, in the beginning, was Emery’s communication, which had regressed. Ryn shares, “She had zero language, and she couldn’t communicate with us about what she needed or wanted. It was screeching, so you would think she was in pain, but that was her way of communicating.” While at The Emerge Center, Ryn learned that Emery had a developmental delay in the speech category, and for the next two years, Emery was completing therapy several days a week. 

A CHANGE IN PLANS

When Emery turned three, she was discharged from EarlySteps but was soon enrolled at Gateway Preschool & Technology Center. The family also made it possible for Emery to continue seeing Housewright as well while at the preschool.

“On day three of being in the preschool, which is a very routine-driven, curriculum-based preschool, they called me and said Emery was not a good mold for the three-year-old class. So panic kind of settled in for me that they were going to ask her to leave, but they told me she could stay, and that they would put her in a different class that would be a little bit more catered, where the teacher would help her more. For that, I’m forever grateful because they have been absolutely wonderful to her. They let her change classes to the older two-year-olds, and they began to help her every day with what she needed,” says Ryn.

Coupled with preschool, Emery began therapy at Abilities Pediatric Therapy Services, where the occupational therapist confirmed that Emery was experiencing Sensory Processing Disorder. At the time, Emery was still on the waiting list in order to get an official autism diagnosis evaluation, and at one point, she was on three different waiting lists to find answers.

“I was calling like a frantic mother. I was calling in New Orleans, I was calling in Lafayette, I was calling anybody and everybody, trying to get Emery in as quickly as possible. Because initially, when we got the diagnosis of developmental delay and sensory processing disorder, I was like, this makes total sense. This is a gift from God. She’s not autistic, she has sensory issues, so we took that as a blessing. As we got deeper into this, we thought, okay, we need services,” says Ryn.

The family learned that Emery is neurodivergent. However, without the official autism diagnosis, insurance would not cover anything and Emery didn’t qualify for ABA therapy. “We were truly fitting in between a rock and a hard place. We were just surviving at that point. She wasn’t fitting the mold of typical or atypical. There wasn’t an entity that could help a child in the gray area,” she says.

A SILVER LINING

A year and a half later, Emery was finally off the waiting list. The family visited Ochsner’s Michael R. Boh Center for Child Development in Baton Rouge, where Emery met with four different medical professionals. Unanimously, they diagnosed Emery with Level Two Autism. 

“I remember as soon as she said, ‘This does correlate with autism,’ I stopped her and I said, ‘Does or doesn’t?’ I was prepared for it, but until you get confirmation, it hits you weird. I started crying because I felt like they’d given her such a gift that we were no longer in this gray area. We were in a black-and-white area, and now we were able to get the services that she so desperately needed. I asked from day one on my hands and knees, begging God for a guide, a book, some sort of direction to help point me in the right way. And I left Ochsner that day with a literal book in my hand, that gave me a list of every resource I could imagine,” Ryn shares.

The journey to getting a diagnosis was full of ups and downs, but for Ryn, the best part of all has been the little things Emery does. She says, “Emery surprises me every day. She’s such a gift. There was a time in my life when I was begging for her to say ‘mama,’ or ‘duck’ or ‘book,’ ‘dada,’ anything. She didn’t talk until two and a half, and it’s just funny now to hear what comes out of her mouth.”

For parents who find themselves on a similar journey, Ryn emphasizes, “You’re absolutely not alone. Find somebody who has walked this path before you, and take as many notes as possible. Ask for guidance. If you’re seeking help, always get a second opinion. Remember, you are your child’s voice. You have to constantly advocate and fight. Keep your head up and don’t lose sight of the end goal because it’s beautiful, and it’s bright on the other side; you just have to keep pushing it to get it.”