What Do I Know?

So today I ponder. What would my children’s life be like if I had no hope? What would it be like if I believed all of the websites, doctors and research that said my children will always be like they were and will never recover? I shudder to think about that but sometimes I see something that makes me think about just that very concept.

Today, in my Internet search for something else I happened upon the show “The Talk” and I wanted to see if Holly Robinson Peete was still one of the hosts, and unfortunately she’s no longer on there because she was a great voice for Autism Awareness. Anyways going off track. So I end up on this quest to find out what some deem autism to be and what they think the prognosis is.
So I go to the HollyRod website first (because she fueled my journey for today) and I click on the Autism tab, and this is the definition that is given: “Autism is a lifelong, complex neurobiologial disorder for which there is currently no documented cure. It crosses a spectrum that ranges from relatively mild difficulties to extreme conditions involving severe language delay; repetitive and/or anti-social behavior, and even aggressive and/or self-injurious behavior. Symptoms of autism change across the life course. An autism diagnosis involves deficits in three core areas: social interaction, use of language, and behavior and interests. Researchers are scrambling to determine whether autism is linked to genetics, environment factors or a combination of both.”
Next I go to Autism Speaks and their definition is: “Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders(PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified), Asperger Syndrome, Rett Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.
Finally, I went to the Autism Society of America and their definition is: “Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.”
Now in saying all of that I say this, in a round about way they all give the same definition for autism, and they all really won’t comment on what they think the causes are and they all say that there is no “known” cure. Now in saying that when you go onto each website and read further they do say that that there are treatments that will make life easier and that often times no one treatment will help that some children will require multiple treatments.
Both ASA and Autism Speaks give great information about the different types of treatments, biomedical and otherwise. Autism Speaks specifically gives out a great packet of information called The 100 Day Kit, and it helps parents navigate the first 100 days after the initial diagnosis. The HollyRod Foundation mainly offer support and assistance in the Greater Los Angeles area.
All of the above are great resources if you are just starting out on your Autism Journey, if you have been in the game for any length of time then the above sites will just frustrate you because it is often things that you have already know. But they are great starting points. At some point in your journey you’re going to have to go behind, speech, occupational, and physical therapy. At some point you’re going to have to push the envelope beyond what you feel comfortable with and do treatments that don’t fit into the box of conventional medicine. That’s if you want to do what the medical community considers impossible…..recover. Our kids can be recovered, it will get better if you don’t give up hope.
Wishing you Blessing and Recovery,
The Fuller’s

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