I took Dana to Home Depot this weekend to buy our blue lightbulbs in support of the Light it up Blue Autism Awareness Campaign for Autism Speaks. She knows enough about Autism to know that her sister has been affected, but she wasn’t really clear about the term awareness. I explained Awareness as people talking about and listening to those who have been touched by Autism as a way to bring about change and help the families that need it–just like we try to do with our website.
She nodded and said she understood. I initially felt good about our conversation and educating her about this grown up topic, but later I struggled with the term awareness and what April 2nd was supposed to accomplish. Does Autism really need more awareness?
People are aware. Just last week the CDC reported that Autism effects 1 in 88. That’s staggering. With those numbers, Autism will hit close to home, for many people. If it’s not your brother’s son or cousin’s daughter, it will soon be your child’s classmate, a coworker’s child, a neighbor down the street, or a child at the park.
People are aware. They are seeing it in their homes, schools, and community, and parents of children with other special needs wish their child’s issues were as widely known and accepted as those with Autism.
People are aware. So now what? What can I do about it? How can I make Awareness the way I described it to Dana–listening to those families who have been affected to bring about change.
The day is here. And with a small platform and a big voice, I have so much to tell you. What can I say on a day when everyone is listening that will make a difference?
It may not be life-changing or ground-breaking, but I feel like I’ve done my part today if I share the following things with you:
The cause of Autism is unknown, but no one can ignore the daunting words like environmental toxins that swirl around the comments and chat rooms posted by moms and dads of Autistic kids. Toxins are everywhere and scary and they affect each child differently. It has been said that Autistic kids are canaries in the coal mine, letting us know that something in our environment is making the most sensitive very sick. Our experience tells us that toxins in foods contributed to Charlotte’s delays. Gluten, dairy, sugar, and soy were harmful to her system and caused neurological issues.
Removing these toxins improved her symptoms.
I can’t speak much for toxins in vaccines, but I will share this with you. The vaccine and Autism connection scared the crap out of us even before we had kids. Seven years ago when Dana was an infant the numbers were 1 in 166. That was enough for us to take alternative action. We were overly cautious and set up an alternative schedule for vaccinations for both girls (only 1 or 2 at a time/1 week apart). But despite our best efforts to avoid Autism, it was still handed to us.
That being said, Charlotte’s symptoms have always been very mild. She’s had only minor social delays with some repetitive language and sensory processing issues. She had no delays in receptive or expressive language and no significant motor delays.
It is our belief that if we had adhered to the standard vaccination schedule, her issues would be much more severe.
Support and Services
When Charlotte received a medical diagnosis of Autism in 2010, we were told that we would receive adequate support to get her what she needed, based on the information collected during the 5 hour testing process. This was not the case. While she had enough “deficits” to qualify for the label of Autism, she did not have enough “delays” to receive ANY treatment or services. We were referred to our local school district, whose tests indicated that her medical diagnosis did not match her scores for an educational diagnosis. In other words, she had the ability to learn and excel academically but she wouldn’t be able to sit still in her chair, do her work without interrupting other students, and would probably have trouble making friends on the playground.
We had to fight tooth-and-nail for her services based on the testing done at the time of her diagnosis. After four months of fighting with our insurance provider, we did get a contract in place for Occupational Therapy that helps tremendously with Charlotte’s mild motor delays, impulsivity, and sensory issues. The OT helps regulate her system so she can try out her new social skills, learn how to get along with her sister, and communicate with her peers.
Day to Day Life
We feel very fortunate to be where we are in this journey with Charlotte. We have overcome tremendous obstacles and taken control of her health issues while bringing the child trapped in sensory dysregulation and social anxiety out of her shell. We work hard to make sure she is feeling and acting her best every single day. We cannot let a day go by without checking to make sure we’re doing everything we can for her. Our meals, schedule, and life must be documented and planned to ensure that it works for Charlotte. Even small changes to her routine or environment can dysregulate her and turn our lives upside down.
With all of this in mind, please consider the following…
Autism is caused by environmental factors and affects the most sensitive of children.
Environmental factors like wheat, mercury, and milk may be harming our kids, but nothing will be done about it if it means loss of income for Big Food or Big Pharma.
No one can make money on a “cure” for Autism. Each child responds differently to his or her environment and each child must be treated and cared for based on their individual needs…there’s no pill for that.
Insurance companies are quick to diagnose kids on the spectrum, but turn the families over to school districts, who do not have funds or services to handle the increased numbers of children with needs.
Each parent who cares for an Autistic child must work diligently against the clock to protect their child from these environmental factors, while fighting for the services and therapies to help them.
I’ve done my part if you are now AWARE of what Autism really is…for our family, at least.