Self-Determination (http://www.thearc.org/posits/selfdetpos.htm) is a philosophy adopted by the disabilities community. It is an important philosophy toward which we should strive, to enable our children to become empowered in decision-making in their lives. But sometimes there are professionals or care providers or social workers who misunderstand the intent of Self-Determination, who lead our young people into a life of freedom that places them at risk of losing that freedom. If the "helping professional" attempts to help persons with FASD without understanding 1) the needs, talents, deficits of the idividual, 2) the nature of FASD, and 3) the risks inherent in FASD that may lead to serious consequences, then Self-Determination can become Self-Termination. Here are a few families' stories of how the social services system has ministerpreted this basic human rights issue.
Paula, a doctoral student, is the mother of Clare, a young woman with FASD.
Our case is like many others: Adoption (trans-racial), and then psychiatric treatment for Clare at age 9 for conduct disorder diagnosis and adoption trauma, ADD diagnosis, suicide attempt and hospitalization; running away; stealing; drug abuse; school disfficulties; and finally FASD and a diagnosis from The Sick Children's Hospital in Toronto of cocaine addition in utero. I have exhausted all possibilties of help for her.
Last summer was my "summer of my discontent." We found out that nothing was in place to help these kids. And ran into major obstables from professionals who should have known better. The HEAD of London Regional Psychiatric challenged the geneticist's diagnosis and the diagnosis from Sick Children's and labelled it "teenage rebellion." (We got the geneticist to see Clare again and he reconfirmed his diagnosis. And we got Clare there by promising a diability pension). But she had left home and was with her boyfriend and his well-meaning but totally ignorant parents. Our last hope was the support circle format. I found the government had a programme in place that helped people set these up (Geez. Government! What was I thinking?)
I am sensitive to the issue of Self-Determination now as Clare now has a support circle around her through my instigation. However, the support circle does not include us--her parents. The social workers are encouraging Clare's "independence" and have supported her decision not to have us as part of the group. Indeed, not one person who knows us is part of the group. Although we suggested several and her brothers were willing. So, I am particularly sensitive to the ramifications of misguided 'professionals' who have no understanding of FAS...Clare can no more make decisions in her own best interest than she can do multiplication. But it is flying in the face of their training to admit that people can be selectively brain damaged... damaged in certain areas but fine in others. Clare's frontal lobes, because of the alcohol exposure, are not fully operative. So, when she felt she would rather be living on her own - like ALL sixteen year olds - she simply did it, instead of the grumbling and crabbing that normal teens do for several years while they PREPARE to move out on their own.
Now, we have a handful of workers who are willing to listen to Clare's presentation of the facts ("My mother goes through my stuff"). Yes, but Clare does not tell them she has attempted suicide by stealing family medications and that the summer I checked everything, she had stolen everything from medications to our lock box key. Alas. The most important important important attitude for any worker to have would be the open mind/open ear. We have found very few who were willing to listen in cases when listening might challenge their prejudices, which they see as their education or their training.