Year 2 the Diagnosis

Melanie celebrated her 2nd birthday on September 20th.

DIAGNOSIS

The appointment was scheduled for October 4, 2010. A couple weeks before the appointment I was told that it had to be rescheduled because we needed to do a pre-evaluation/interview. My heart stopped for a moment because I thought I would have to wait months before being seen again, but that was not the case. On September 21, 2010 Adam and I went for the pre-evaluation/interview. The session lasted about an hour. The psychologist asked us a lot of questions that you had to answer with yes, no or sometimes. The first session ended and we were scheduled for another one.

Session number two was on October 22, 2010. I was not able to attend this session since I had to work. Adam took  Melanie, he said that he had to answer a lot more questions while the psychologist did her evaluation on Melanie. He was able to stay in the room with her. After about an 1 1/2 the session was over and he was told that the results should be in, in about two weeks.

November 2, 2010 I receive a phone call saying that the results were in but I had to come in to hear the results, bummer. The appointment was scheduled for November 10, 2010.

November 10, 2010. The psychologist started out by explaining what her findings meant and after what seemed to be 30 minutes later she gave us the result. Melanie was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified  (PDD-NOS).  Meaning that she was on the Autism Spectrum. I had a feeling that, that would be the diagnosis but deep down inside I was hoping that she would say that Melanie was perfectly fine and that her only problem was speech.  I really did not understand the diagnosis until I started talking to people at Early Foundations. On the Internet there is so much misleading information that I was confused. Now I know what her diagnosis means and I have some knowledge as to how to help Melanie recover.

Here is a little bit about how Autism is diagnosed. Its from a book called Overcoming Autism by Lynn Kern Koegel, Ph.D and Claire LaZebnik

"to be diagnosed with autism, children must have difficulties socially interacting with others; they must have impairments in communication; and they must also show restricted interests. The diagnosis is simply based on observation of the three symptoms and the expression of these symptom areas can vary considerably. For the PDD-NOS, children are labeled with this when they have two of the three categories".

As of now no one knows what causes autism, research is leading towards neurological and not biological. There are lots of opinions that it's caused by vaccines, chemicals in the food, problems with delivery of the baby, medications used during delivery and so forth.

INSURANCE

What we do know is that intensive therapy is proving to have positive outcomes for these kids. Kids need anywhere from 20-25 hours a week of therapy. Unfortunately most insurances do not cover it and if they do you have to pay out of network fees, pay the deductible and your co-pays. The range for treatment costs can be up to $70,000 a year.

Awhile ago I called the insurance company to ask if they would pay for speech therapy and occupational therapy. I was told that if it was a developmental delay then insurance would not pay for it. It had to be a medical delay. So I get my diagnosis and I call Aetna UPS. They tell me that because my daughter has a chronic condition that they would not pay for the services because they did not see  a positive outcome. I lost it at that moment, I started to cry and said "so you are saying there's no hope for my child". She said "there is always hope and went to repeat the script in front of her. So since cancer is a chronic condition should we not treat it and so is diabetes. Of course not, that's different that's what people would say. With the research that I have done there is recovery from Autism, it doesn't mean that you will be 100% cured but that you are just putting autism into remission, that's my opinion.

Aetna HCA said they would cover speech therapy and occupational therapy but first i would have to pay $177 dollars a month, plus meet my deductible of $900.00, plus pay 25% of the bill and a 25% co-pay. Really now, that does not help me at all. One hour of speech therapy is about $85.00, most children need 3 hours a week and that's not including occupational therapy and ABA therapy. I'm furious with our system. but wait a moment there's more.

If you make under $45,000 a year, you qualify for medicaid, which will pay for everything for FREE. If you make over that you are screwed, it pays for ZERO. Its frustrating because we are told to get an education to better ourselves and when we do it and you happen to have a child with disabilities, it comes back to bit you in the butt. There was a law that a family was trying to pass that would make insurance company's pay for therapy, I can't remember if it would pay 100% or most of it,  but because I live in a republican state, that law did not pass. It did pass in Arizona, so I guess I will be moving there in 3 years. Whats unfortunate is that families are being forced to move out of state or get tons of loans to pay for therapy.

I am thankful and feel fortunate that my baby was chosen to attend Early Foundations, without their help, Melanie would not be making the progress that she's making.