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United Way of the Coastal Empire – Out of the Box

June 19, 2009

Hey! here’s Olivia and Mama on the United Way’s website. Hooray for Olivia. ha ha, some of the timeframe they quoted is “off”, and Olivia was dx with pdd-nos in 2006, then dx autistic in the summer of 2008… oh and I told the gal that “you need to think outside the box”… outSIDE of the box… oh well…

Regardless, she really has made huge strides over the past year. I took her last week with me to see my “guru”, and he was commenting on her behavior, and said “wow she makes eye contact, a lot of autistic kids do not do that”… and I reacted somewhat defensively to his statement, as if I were trying to defend the fact that she is autistic… then it dawned on me that was exactly the EVIDENCE of her improvements, the fact that I had to say “no no, really she used to not look at me or anyone”….

United Way of the Coastal Empire – Out of the Box.

Faye always knew that something was different about her daughter, but it wasn’t until Olivia was two that she realized just how different. “She just stopped looking at me with that loving sparkle,” says Faye. For the next three years, Faye would battle doctors and school officials in search of an answer as to why Olivia was not developing verbal skills, was unable to feed herself, and could no longer make eye contact. “As a family, we were lost with her,” she recalls.

In the summer of 2006, Faye finally got an answer when Olivia was diagnosed with autism. “I spent the first half of Olivia’s life fighting for a diagnosis,” says Faye, “but that was just the beginning.” Her next battle would be about finding the right therapy to bring Olivia back. Enter Kicklighter Academy.

“‘There are no learning problems; there are only teaching problems.’ But that’s not mine, I think that’s Lovass,” says Dianne Wilson-Evatt, referring to world-renown autism expert Dr. O. Ivar Lovaas. Dianne has been the Academy Director for Kicklighter Resource Center since 2005, when she brought the Lovaas model of therapy known as Applied Behavioral Analysis (ABA) to the curriculum. Today, Kicklighter Academy, a United Way funded program of Kicklighter Resource Center, is the only learning center in the area that specializes in ABA therapy with inclusion – the pairing of typically developing children as peer models to children with autism and other developmental delays. “Kicklighter was already practicing inclusion when I came along,” she explains. But, according to Wilson-Evatt, it is the marriage of the two practices applied before age six which creates a recipe for success. And the proof is in Olivia.

Within weeks of attending the Academy, Olivia was no longer throwing tantrums, had developed several signs of communication, and was visibly less frustrated. The most significant change in Olivia, however, has been the eye contact. What may seem small to some, for Faye – who ached only to look into her daughter’s eyes and see her looking back – it was nothing short of miraculous. “As a parent, it’s your instinct to care for your child, and it is also your instinct to expect a response. I wasn’t getting any of that, I felt disconnected.”

Kicklighter Academy offered precisely the “out of the box” thinking about her daughter’s capabilities that Faye was searching for. In addition to the remarkable strides that Olivia has made, Faye feels grateful that her other two children, who also attend the Academy, are learning in an environment in which their sister is not only respected by others, but is also cherished and valued. “It was difficult to see people not understand her, not respect her needs.” With what she herself has learned at the Academy, Faye now teaches family and friends how to do just that. “It makes spending time with Olivia pleasurable again…it enhances her quality of life.”

So what advice does Faye have for parents who may be struggling with a special needs child? “No matter what the circumstances, no matter what your child is faced with, you must remember that you are your child’s only advocate. Never stop knocking on doors, and don’t take “no” for an answer.”

3 Comments leave one →
  1. June 19, 2009 9:22 pm

    Congrats on the nice article and recognition.

    I pulled one of the few political strings that I have to try and get us moved up on the endless standby list for a highly recommended specialist at a medical center for our energetic and different little one. We are hopeful for some feedback on his behaviors soon.

    • fayezie permalink*
      June 21, 2009 5:06 pm

      When I was in the middle of some of my toughest pursuits, on behalf of Olivia, I felt literally like I was managing a small company. In fact, when I went back to work prior to josie being born, I included on my resume some of the “skills” I’d learned/acquired from having a special needs child. On the phone constantly, following up with this nurse here, and that specialist there, and getting records from XYZ, and staying on top of insurance… yadda yadda…

      More important than finding a diagnosis, is getting intervention. A lot of states have therapies that you can receive for free or minimal fee for children under 3… They will come and do an assessment on their own to determine if their services are needed, and then they proceed from there…. point being that no matter whether a child has a dx, the earlier they get started in therapies, the better….

      Good luck! best advice is to just stay on top, and keep pursuing… We’ve been from Savannah to Augusta to Atlanta and even Tampa Bay for assessments, appointments, etc. But still, the most important thing is that you’ve already started therapies.

      • June 21, 2009 8:51 pm

        Thanks–your blog and comments have been helpful.

        We have 2 different folks from early intervention that have been doing home visits for several months now, and they have provided some help (the Mrs. has an advanced degree in a related field and that has helped us know what is good help and what is bs).

        He may test out for some of EV services in a few weeks with his next birthday, but anyone around him for 2 minutes can tell he is not like other 2 year olds. Unfortunately, they have been baffled by his behaviors as well–and that is why we are hopeful that this recommended MD can offer some guidance.

        Glad you all enjoyed the beach–it was hot and windy here today as well.

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