Setting Her Up for Failure?

I am thinking of changing my blog name to acceptance with resignation and surrender. It doesn’t have quite the same positive ring as Acceptance With Joy; the name is too long. Still, it is more true of my current mental status. Adoption experts keep teaching parents that stabilization in a adoptive home results in untold benefits for many of the special needs children currently living in our country’s foster care system. In fact a pediatric psychologist wrote in the recommendations section of an evaluation:

Marissa’s adoption by and care from Ms. S****** will likely be the central ‘treatment’ of her condition. The long-term, dependable maternal relationship that Ms. S****** offers is certainly the greatest gift for Marissa. Pharmacologic and psychotherapeutic interventions can only add to this central ‘therapy’ for Marissa.

Research done at the University of Washington on Secondary Disabilities in FASD lists living in a stable home as a protective factor. Secondary disabilities are supposedly not present at birth. The message consistently given to adoptive parents is that they can prevent these outcomes. How have I done? At 17, Marissa has a history of mental health problems and a disrupted school experience. She has had trouble with the law. She has been confined to inpatient treatment for mental health, twice. She has experimented with drugs and alcohol. She is inappropriately promiscuous.

Despite having been placed in a home that is not violent, where her needs are met and where her parents imperfectly reflect the love of her Creator, she has experienced every single solitary secondary disability. I haven’t protected her from anything really. There are days I feel like a failure. On my sane days, I know that isn’t quite true. With the exception of tobacco (and Ron would say caffeine — I don’t count caffeine), she is not addicted to drugs or alcohol; she doesn’t even regularly use those things. She has not been pregnant. She does not have a criminal record. She has never been jailed. She is one of the only handful of her friends who doesn’t have a parole officer. I am holding out on asserting that she has finished high school. I don’t know if she will. Who in the world set the start day for school based on the 5th birthday? Marissa will turn 18 in the middle of her senior year. I will not be homeschooling her this year. She has told me that she will leave home and quit school on her 18th birthday. The school start date should be designed to make sure that before they are legally emancipated every person has a basic education.

Somehow, in my paradigm, ‘therapy’ and ‘protective’ were related to a good outcome and not just blunting and attenuating a bad outcome. I guess I was vain enough to believe that, because of my awesome parenting, Marissa would be one of 0.6 out of 10 adults with FASD who do not have mental illness. Or, one of the 3 out of 10 adults with FASD who did not have a disrupted school experience. Perhaps, with my commitment to creating “an environment of transformational love” Marissa might be one of the 4 out of 10 adults with FASD who do not have trouble with the law. I mean, statistical possibility is related to but not equal to outcome. Besides, my chances were approaching 50/50.

Now the scariest statistic of all:

To determine levels of independence in adulthood, two additional categories were identified for individuals 21 years of age and older (median age 26):

* Dependent Living was the situation for about 80% of adults with FASD.

* Problems with Employment were indicated in 80% of adults with FASD.

Only 8% of the individuals in the study had no problem with independent living or employment.

To the policy makers, adoption educators, social workers, mental health workers and all the other people who come in and out of my life, I have accepted that Marissa will not be one of the 0.8 out of 10 adults whose life will not be marred by problems with independent living or employment. I just don’t know what to do about it. Our state’s statute concerning disability protection narrowly defines a person with a developmental disability as, “any person age 18 or older who has been diagnosed as having significantly subaverage intellectual functioning existing concurrently with demonstrated deficits in adaptive behavior.”

Tomorrow morning I will leave my home at 6:30, pick up Marissa and bring her for neuropsychological testing. Her IQ test will be redone. As in the past, she will be well rested. She will be brought to a private room; a room without any extraneous stimulation. One evaluator acknowledged that, “This was an ideal testing situation (e.g., quiet, one-on-one) and thus results may not accurately reflect Marissa’s performance at school or home where, for example, directions may be less explicit and there may be significanly more potential distractions.”

Marissa has already asked that the medication she has been taking every day to control her mood be held the morning of the test. It makes her excessively tired and she gets headaches. Would it be totally and completely unethical for me to ask that it be given? Why would I want to create a perfect testing environment when Marissa’s ability to function is going to be tested in a real, imperfect world with medications on-board? Who would be setting her up for failure? Me? Or the people who cannot see, vote and accommodate people who have “demonstrated deficits in adaptive behavior” but a normal IQ?