© 2003 Teresa Kellerman
Independence for the adult with FASD may not look like the kind of independence most normal people visualize. But of course, normalcy is not an option. Independence does not always mean getting to live life the way we want, or with nobody’s help. We all are interdependent on each other. Individuals with FASD just need to be a little more interdependent, with a little more support from others. Here are steps that you as the parent or caregiver can take to help the adult with FASD cross the bridge safely toward a life of relative independence:
1. Steady yourself. It can get slippery and you need firm footing. This means, Get Real. Take off the rose-colored glasses of false hope. Stop thinking that you can just let go and everything will be okay. Put on your FASD glasses and look at all the potential problems and think of possible ways these problems might be prevented or minimized. Make lists. Write down all the times there were problems or failures. Write down all the times that things went well and there was some element of success. Write down what contributed to the failures. Write down what was in place when there was success. Educate yourself as much as possible about FASD. Get accurate information from credible sources. Facts and Acceptance will give you balance as you move forward.
2. Reach out your hand. Being willing to help the child/adult succeed does not always mean the child/adult will accept your help. The hard part is getting the child/adult to reach out and hold onto the support you offer, the support the child/adult needs. The person with FASD needs to be on firm footing also. This means the person will do best if there is awareness of the disability, how that interferes with living and functioning, how that places limitations on freedom, how that means restrictions are necessary to avoid serious trouble. Be honest and upfront. Let go of guilt and regrets. Tell it like it is. If the child, teen, or adult insists on being given freedoms that seem reasonable for normal people (but would be very risky for them), play out scenarios by asking, “What if I let you do that? What might happen? And then what might happen? And then what?” They may see, at that moment, that it is not worth the risk, but they need to be reminded later about the risks and the reasons for the restrictions that are imposed. Others who are not well informed about FASD or who do not accept the reality of the disability might throw the person off balance. It is best if everyone who is helping the person or advising the person knows about FASD and the implications of encouraging “normal” independence.
3. Take one step at a time. Move slowly, encourage small steps. Make a plan on a trial basis, with a contingency plan to fall back on if things don’t work as planned. Any steps toward independence should not place the individual at serious risk. Take into account past mistakes, environment, resources, and the cost of any adverse consequences. Build positive reinforcement into the plan for success.
4. Build a Circle of Support. As the child grows into adulthood, there will be a reluctance to depend on immediate family. Because they will not be able to succeed entirely on their own, and because parents cannot live forever, there has to be a time to let go. But hopefully that time does not come until there is a safety net ready to replace the security afforded by having 24/7 supervision at home. This Circle of Support will include informed relatives, job coach, mentor, church members, social worker, and others.
5. Let go. Say a prayer. Sigh with relief. It can work.