Story of Hope – Making Her Voice Heard

Aurelia’s mom, Lucine, grieved when her daughter was first diagnosed on the autism spectrum at age 4. “I really lost all hope for her future, of a normal childhood, and most of all, I thought I would never get to connect to my child.” A busy mother with two-and-a-half year old twins and a 6 month old infant when Aurelia was diagnosed, Lucine’s rudimentary knowledge of autism was from the movie Rain Man. Faced with epic meltdowns, elopement, and fecal smearing, Lucine felt isolated from her community and to top it off, her health insurance denied coverage of the services her daughter needed.

In addition to feeling overwhelmed and worried that her daughter appeared to have no connection to her, Lucine felt powerless in the struggle with her insurance company. Shortly after Aurelia’s diagnosis, Lucine connected with Korina Heard, Washington Autism Advocacy & Alliance (WAAA) Parent Partner. “It was like an angel reaching out in my moment of despair,” effuses Lucine. “She empathized with me. She offered me all sorts of tools and resources for support. She opened up the world that is the autism community for me.”

The Drake’s initial grief turned to strength and wisdom as Lucine and her husband Brian armed themselves with knowledge and connected with WAAA advocates. Lucine attended the IDEA: Blueprints to Special Education workshop as she delved into the early days of her daughter’s IEP (Individual Education Plan). The couple also connected with WAAA Staff Attorney Mira Posner and Health Law Advocate Trish Thrush. Thrush guided the Drakes in the early days of navigating the insurance appeal process and then Mira helped bring about a successful insurance resolution.

Lucine notes, “it’s a relief to know that we can enlist any and every therapy our daughter needs and that anything that should be covered by insurance, will be.” Better yet, autism therapy benefits are now covered for all children under the same benefit plan. “The result is exponential,” comments Posner, “not only were we able to help Aurelia access benefits, but also all of the other participants on the plan. We look forward to the day when every employer covers autism therapies.”

A Powerful Voice

 

Now two years into the diagnosis, the therapies and support have made a difference. The Drakes are proud of Aurelia and hopeful for her future. Lucine explains, “I’ve learned as other parents of previously non-verbal children have – there is and always was a richness to the workings of her mind and heart, we simply weren’t privy to it.” As a toddler, Aurelia communicated solely through echolalia and scripting, with no expressive language beyond intense meltdowns. Then a defining moment kindled hope for Lucine. The two were in the car heading to therapy (as many autism parents can relate to) and as Lucine flipped through radio stations, Aurelia started fussing. As the fussing became louder and more intense Lucine realized there was a particular song her daughter wanted to go back to. She knew she found the right song when her daughter’s face lit up. Listening to the words to Fight Song, Lucine realized her daughter, although nonverbal, was communicating with her. She was in there — powerful — a warrior. With a message.

A Hopeful Future

Aurelia’s parents declare it’s a privilege to parent her and learn from her. They marvel at her super-powers — she started reading novels shortly after her fourth birthday and can read a fiction novel in under an hour. Now almost 6, she can read at an adult level and has requested homeschooling units in neuroscience and French. Most amazing of all, because of the access to speech therapy, Aurelia has progressed from being unable to hold a conversation to now participating in profound philosophical discussions with her family. Her parents point out that because of her differences she’s had to work harder than many of the children around her and the character she’s developed as a result is humbling and inspiring.

Reflecting back to the early days, Lucine comments, “that initial contact by Korina was EVERYTHING.” The couple appreciates the assistance they received and WAAA’s support to all families navigating the complicated world of autism parenting, from ensuring children receive the education they deserve to navigating insurance coverage so that children have access to the therapies they need.  

Brian remarks, “without specifically focused assistance from WAAA, I can’t see how anyone would overcome the roadblocks and red tape that have been set in the way.”  “Our daughter is a gift to us,” Lucine says with a smile, “we can’t wait to see what more she brings to the world!”

A sweet mother-daughter bond

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