Wednesday, August 11, 2010

Stigma


During the ten years I have worked in medicine, I have heard a lot about and witnessed the stigma of mental illness and developmental delay among people of other ethnicities. 
When working with parents I often heard their concerns of "what if my neighbor finds out there is something wrong with my child", "I will be blamed", or "people will stare". 
Some cultures view people with mental illness or developmental delays as posessed and do everything in their power to cast out the evil spirit, which doesn't do anything but traumatize the afected person and frustrate the caregiver. Others hide away, hoping no one ever notices the "difference"
It breaks my heart to see children that have so much potential not get the help that they need for fear of being viewed as different. 
I could deal with all of this from arm's length because the cultural stigma of mental illness didn't exist in my life this, until I realized  a lot more was going on with Diego than the terrible two's.
Even I, with all of my medical experience, wrote a lot of his behavior and delays off due to the nasty divorce his father and I were going through. 
But eventually it was glaringly apparent. 
When I finally brought up my concerns to Diego's (very traditional latino) father, his response was "My son is not retarded, you are crazy!!". 
I was prepared for this reaction as my ex had never been one to think outside of the box, and doesn't believe in medicine.
I obviously don't need to explain the divorce :). 
I went on with getting Diego evaluated and eventually he was diagnosed with an autism spectrum disorder.
As if this weren't enough of a blow, Diego's father refused to believe it or even try to understand it as he just kept repeating "there is nothing wrong with my son" anytime I brought the subject up.
I spent a lot of time giving him reading material and begging him to acknowledge Diego's challenges as well as his potential, and get him on board, but no dice.
I even paid for numerous sessions with a therapist (male and latino) well versed in autism to explain it Diego's father.
Nothing worked and Diego had started hurting himself and me during tatrums upon returning from his father's house.
It eventually got to the point that the joint parenting arrangement we had was too much for DIego.  Not having therapy or structure at his father's house and then having it at home with us was a recipe for disaster.
We all know how bad our children NEED consistency.
It has been a year since Diego's diagnosis and unfortunately his father still has yet to come around, despite losing custody of his son and reading numerous reports from the various specialists that Diego sees.
Nothing works.
A few weeks ago it was mentioned to me that Diego was/is regressing, and that depsite the numerous therapies he currently receives, he still needs some additional help help...a.k.a medicine.
I was very hesitant at first, spent many nights questioning myself as to whether I had truly done enough this past year. 
My end result is that I really couldn't have done more, so after asking two more doctors that I trust, I made the decision to start my 5 year-old munchkin on medicine.
A hard descision in and of itself, but I knew the true battle would be convincing Diego's father to give him his dose the one night a week that he has him. I prepared myself for battle and called him.
I took the time to explain everything, I knew this would be a tough pill for him to swallow,but I wasn't exactly prepared for all that came out of his mouth.
He blamed me for Diego's behaviors, said that I spoiled him and that was the entire pronblem, told me I was a horrible mother for pushing for extra help for Diego in school...he screamed "dont you know people will know he is different!!!"
It was a long discussion that went nowhere. 
I believe a lot of Diego's father's denial and anger comes from his ignorance, lack of eduation, and the fact that Diego is his only son. 
Maybe he sees a bit of himself in Diego and that scares him. 
Regardless of it all, his lack of involvement hurts Diego's progress. 
This stigma amongst my people and people of other ethnicities is so very dangerous and I personally will do all I can to assist in bringing the truth to light. 
The truth being:
That no matter how "different" our children appear, they are not hopeless and that there is nothing wrong with seeking the help that they need to reach their full potential.
 
Shivon can be found blogging about the advntures in her house at  My Brain Wants To Go Home

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