If my child had cancer, he would most likely get any and all of the treatments he needs, nothing experimental , but the basics. If my child had cancer, the school district would do all they could to accomodate him in class and at home if needed. If my child had cancer there is no way anyone would say to me “oh my kid has/does that to, there is nothing wrong with your child”
Let’s be clear that I don’t want Diego to have cancer.
My point is that if Diego was in danger of dying from a disease that the medical profession has a good grasp on he would get what he needed and anything other than that would be morally reprehensible. Teachers would be concerned, friends and strangers alike would probably go out of their way to make sure the family is doing ok. Doctors would do their best to help in any way that they could.
Now let’s talk ASD’s, according to statistics 1 in 91 children will be diagnosed with an autism spectrum disorder (1 in 58 boys), in fact more children will be diagnosed with an autism spectrum disorder than cancer, diabetes, aids,and Down Syndrome combined. So does somebody want to tell me why the hell we as parents of children on the spectrum have to fight so damn hard for what our children NEED?!?!
The thing that has stood out most since I suspected an ASD for Diego is “The Fight”.
I have spent everyday since 06/17/2009 fighting.
I have fought a psychologist who stated that she couldn’t diagnose Diego with an ASD simply based on the fact that he wanted to be social and could use his imagination (although most of it is scripted). She just chose to disregard everything else that was going on and ignore that children with Aspergers WANT to be social, just don’t know how to. Her response after 90 minutes was that we will treat like he is on the spectrum and re-evaluate in a year.
I thank God for the neurologists I work with, because I got in to see a Neurologist by the name of Dr Doris Trauner (widely known for her research in child development) very quickly. She saw Diego and went on to give him the diagnosis of Asperger’s Syndrome.
I figure ok, NOW that we have a diagnosis we will get what Diego needs….umm no.
The past 4 months have been full of fighting the school district dummies and the insurance dummies (I’m well aware that name calling isn’t very adult, but look it’s better than cursing them out 🙂 ) to get what my baby needs. I meet with Diego’s pre-school teachers every month in the hopes that the information I pass on to them will help them understand, the teacher’s assistant is more open to this than the self-important pre-school teacher. The only accommodation currently being made at school is a weighted lap pad, I guess the arm and leg that I’m paying doesn”t buy much more than that. Diego’s pre-school is very structured so this works well for him and for that I am grateful, but the rest of it is crap. I had a school district speech therapist basically say that the neurologist/private ST & OT are wrong and that there is nothing wrong with Diego. She decided this after meeting with him for 15 minutes, are you f*****g kidding me?! Who does this?!?! Asperger’s is not a qualifying diagnosis for the school district or our local regional center. I am so grateful for my private insurance,otherwise Diego may not be receiving any services, but trust and believe that I have been fighting them for everything we have been getting.
I thought maybe because it seems that Diego is so high functioning that this was the problem.
Thats a big fat NO as well. I have spoken with many parents with children on the more severe end of the spectrum and they have the same battles.
ASD’s may not be cancer, but the mental health implications in the future for children who are not treated can be just as bad. Children may die from cancer but I promise you left untreated or inadequately treated ASD’s are just as lethal.
I know how to fight, I read every damn day to arm myself with the most current information I can, I have worked with medical insurance companies for 9 years and am well aware of how sneaky the are and the fight that is required, these things I will never stop doing . But it is exhausting. What also infuriates me is that there are a lot of parents who may not question doctors thinking the “the doctor knows best”, and that isn’t the parents fault, it is the establishment’s fault for failing them. This is not OK. I hope that maybe once I am in a place to, that I can help increase awareness and understanding for our children.