(Happy) Independence Day
Two years ago, John testified at the Arizona FASD Town Hall meeting that it was time that he gave me my independence. Within a year, I was able to qualify him for long-term care - I was so afraid that might not ever happen! A few months later he moved into a residential placement with another young man with disabilities. A few months ago, he moved into the house where his sister Karie lives, and both are cared for by wonderful 24/7 staff. So I am now officially independent! I am finally free to live my own life, follow my own dreams. Which means I will continue to fight for and speak on behalf of all the children and adults who are not as fortunate as John, who do not have the luxury of qualifying for needed servies, who do not have the protection of a 24/7 residential program.
Independence is what we all strive for, what we as parents want our children to achieve when they reach adulthood.
Independence is given to some who cannot handle it, and is denied to others who deserve it. The children who do not qualify for disability services, but who are nonetheless disabled by prenatal exposure to alcohol that renders them defenseless in a world that expects them to act their age, and holds them accountable for behavior they cannot control, because they have poor impulse control, are socially immagure, have a faulty conscience, and poor judgment.
Of all those kids with FASD, only 15% will qualify for services, and the other 85% are at the mercy of the real world, where they will be expected to act their age. They may be adults on the outside, but they are still children on the inside and always will be, even while they try to hide their naivete and immaturity, they will be very good at "acting" their age.
And they will be given their independence. Indeed they will be thrown into their freedom, ready or not, and most of those with FASD are clearly not ready at 18, or at 21, and only some will be ready by age 25 or 30. Most will need a support system of some sort to stay safe and out of trouble. But most will not have this circle of support or will shun it in their eagerness to prove their ability to make it out there.
And most cannot make it out there. One study shows that 60% will end up behind bars eventually. And many who get into trouble with the law, do so again and again, because of their inability to learn from their mistakes.
Too many go out into the world with a good start - a job, a place to stay. But eventually most of them lose their job, become homeless, and many end up abusing alcohol and other drugs, in unstable, unhealthy relationships that result in unplanned pregnancies and another generation of alcohol exposed babies. Too many teens and young adults with FASD end up arrested, addicted, injured, or killed. What happened to their independence?
What happened to Chris Surbey's independence? He is now free to rest in peace.
Where is the freedom of the 25-year-old "boy" who roams the streets, looking for his next high, in and out of jail, no place to call home?
Where is the freedom of the just-turned-18-year-old girl with FASD as she tries out her independence by taking up with an older man, when she quits her medications, starts drinking and using other drugs? Oh yes, she is free right now, but for how long? And with what dire consequences down the road?
I tried to speak up for these kids, I really did. I tried to coach their parents. I tried to convince their care providers. I tried to educate their community leaders. I feel terrible that my speaking out was not enough to protect them from their right to be "free." And now some parents are free to mourn, others are free to live in constant fear of what will happen to their children tomorrow as they seek their independence in the world.
My hope this Independence Day is that those who have the power to make decisions over the lives of children and adults with FASD will listen to the parents when they plead for help, that all individuals with FASD be given independence they deserve, within the realm of health and safety, the kind of independence John has been given, with support and supervision to protect that precious freedom.
FAS Community Resource Center