The Right to a Healthy BrainGUEST POST by ANN YURCEK -
award winning author Tiny Titan
Keeping Up with the Tiny Titan -
original post April 3, 2013
I was talking with a friend today about a conversation with Miss Dee who was talking about her FASD.
"Why did she and Little Guy not have the right to be born with healthy brains?"
How can I answer that question?
We were venting about the unfairness of FASD. Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. There is no place for people on the spectrum to fit. Mental Health services, Developmental Disabilities, Autism, are the silos where they can garner support for their prenatally acquired brain injuries. But for many who are on the spectrum they "just" don't fit. FASD is not even in the DSM as a disorder. So many service silos require a fail first mentality, you have to fall so far to get any help. We need preventative early intervention services from birth on and life long support for those affected.
For the fortunate few, they can fit someplace. They fit on the DD if their IQ's are low enough, or on the Autism Spectrum if they have enough social inadequacies or sensory issues, or on the Mental Health Spectrum when they have floundered and failed enough to fall into secondary mental health issues. People who have a Traumatic Brain Injury have a silo to garner services, but not FASD.
But also, why can't we get help for those with FASD's. It is a shame based disorder. Most will not get diagnosed to the root cause. It is OK to have ADHD, ADD, Autism Spectrum Disorders, LD ( learning disability), or other mental health problems in our society. But to get diagnosed, there has to be confirmation of drinking alcohol during the pregnancy which then becomes someones fault. In our legalistic society, we blame the parents, we blame something for outcomes. What parent is brave enough to admit they caused their child's brain injury? There are a few courageous Parents who love their child enough to do it. But most who are diagnosed are not the families of origin.
Kids from the foster care system or adopted from one of the countries known for their alcohol comsumption are sometimes fortunate enough to get diagnosed at a good diagnostic center. But many will still be missed. For many of the others, it is the other "little" d's that they will be their umbrella. ADHD, ADD, ODD (Oppositional Defiance Disorder), AD, SID, ASD, BD, DD, OCD, LD. So many little d's that they will find a label, but never the underlying cause.
But finding the root cause does not help our kids/adults,if we can be fortunate enough to find a diagnosis. They still will have to be served under one of the umbrella's that often times are a poor fit. Many will not.
But there is no place for them to find supportive services that really address their unique needs. They are often too bright to feel comfortable but will not qualify for services under the Developmental Disabilities Category. They are not Mentally Ill enough to qualify for MH services until they really fall apart. Sometimes when their predisposition for Substance Abuse Issues gets them addicted enough, they may qualify for their services, but they can't manage to learn and keep the sobriety they teach.
Many a parent calls who have that young person who barely passed high school, who cannot hold a job, they may or may not have gotten special education services and they were adopted or live with a kinship caregiver and know that their young person has been prenatally exposed and they are floundering on where to go next. They do not have enough documentation or they have been held together by the families support and they know that their loved one cannot make it on their own. They want to know what to do, where to go for help?
I have heard some professionals who actually think these kids can outgrow their Fetal Alcohol Spectrum Disorders??? There were those who told me that it was TOO LATE to help my children and just write them off.
We need HOPE, we need HELP, and we need to recognize FASD.
They were innocent victims of prenatal alcohol exposure and they will pay a lifelong price for their mother's drinking.