Knowledge is Power

The biggest lesson I’ve learned thus far is that knowledge is more than half of the battle.

A few weeks ago I watched an Autism Speaks special that i came across by accident and I was both shocked by some of the statistics provided and somewhat hopeful listening to the stories of these families. I listened as families with both small children and adult children with autism spoke about their challenges and their accomplishments. They spoke with local companies who employed people with autism and had specific employee programs to help them to be successful. Once again I was overwhelmed as I soaked in all this information as we were well into the evaluation phase of our own diagnosis.

Before i continue I want to first clarify for our new followers or those who are still catching up, Caleb has not been diagnosed with autism. In fact he hasn’t been diagnosed with anything except for developmental delays and allergies. There is a nearly 6 MONTH waiting list to see a developmental pediatrician here in our area so we are on the wait list and we have an appointment scheduled for a few months out. (I’ll come back to this point a little later…keep reading!!)

Anyway as I’m watching this special, and as I continued to research afterwards, I learned two things that broke my heart. The first was that early intervention is the key to the success of children with autism and/or sensory processing disorder and the second was that our minority babies are typically the ones who don’t have this opportunity. What I also learned, and not by reading a bunch of statistics, but in my own experience was that this happened for various reasons and I’ll tell you race wasn’t the first thing I noticed.

When I first started telling people about what was going on with Caleb the overwhelming response was “There’s nothing WRONG with that boy.” as if having autism made him wrong. “Caleb just wants to do things in his own time.” As if I should feed him all of his meals until he’s 8 because he MIGHT just be lazy.”Doctors are quick to over diagnose.” This may be true but if it’s not then who suffers the most?! “Boys just do things slower than girls!” umm, maturity and development are 2 different things!!

I can hear them all clear as day like it happened today, a list of excuses. I couldn’t help to think of all the parents who either had these thoughts or had this response from the people closest to them and how they may have been embarrassed to seek assistance for their children or second guessed the things they knew about their own child. I also think about how happy I am that I don’t give a shit about what people think. I understand that my only priority is to make sure that the greatness within my son has the ability to shine through no matter what he may or may not have and there never has been or will be anything WRONG with him.

The other main issue I found was that it wasn’t the color of our skin that impacted the situation but the color of my money and the fact that I had it. The medical professionals we’ve worked with so far have been great and quick to issue referrals as needed or as I requested but what they were not quick with was the FREE options available to us for these services. I am fortunate to have a great career with great medical benefits so when we started down the path of seeing specialists my insurance covered a good percentage of the cost however not once did any of the 5 physicians and 4 therapists that we’ve spoken to over the last few months mention that there was a program that Caleb was eligible for that wouldn’t cost me a dime for his sessions. In fact nobody mentioned that it was a law and that all states have these free services for children from birth to threee years old. The Early steps program(called something different in every state) is only eligible for children until they are 36 months and with Caleb being 31 months we were barely eligible. Imagine my surprise when I happened to stumble upon this information after paying extensive fees.

Actually it wasn’t a stumble it was God who sent me this information by way of a friend and blog follower who DM’d me information for FL after we were discussing an unrelated topic…HE is always on time.

Once again I was left thinking about families who may have minimal insurance but can’t afford the copays or can’t meet the deductibles and are therefore left feeling like they have no options. Or what if they have no insurance? I wonder if at that point they would be advised of the free services….based on the statistics I’m not quite sure.

How are these families supposed to get the early intervention needed? How early can one get diagnosed when there is a 6 month wait list to see a specialist?

As I write this post I reflect on how we have to be the biggest advocates for our kids. We have to read and research and ask questions. We have to follow our gut and ignore the outside excuses and we have to do it NOW! There just isn’t any time to wait……..

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