Failed Flight

Two years ago Marissa and I started a several year course designed to teach her to fly somewhat independently. Marissa has Fetal Alcohol Syndrome; the statistics look pretty grim. Very few, only about 1 in 10, adults with FAS successfully live independently and do not have trouble with employment. But, I began to imagine a future for Marissa where she could live on her own with only minimal assistance. I don’t believe she will ever be able to independently manage her finances. I still have that goal for her. In my mind, I began to view Marissa as a bird, someone born with wings and intended to fly. I am afraid that prior to that, I viewed Marissa more like a caterpillar who would never, ever become a butterfly, an angel that never gets her wings. FAS had somehow destroyed her ability to develop wings ever. But, teens and adults with FAS need the same thing all of us do. They need to grow into the person that God created them to be.

A month ago today Marissa started a job at McDonald’s. I have been thrilled and proud to watch her responsibly work toward learning to be a valuable team member. She has made sure she was on time to work. She has communicated scheduling needs with her boss. When a misunderstanding between her and management meant that she had to choose between an activity she wanted to do and work, she chose to work. She has also learned to respect the managers that had high standards. She has not been fired. But, her first flight into the world of employment is, none the less, grounded.

On Tuesday night Marissa did something incredibly stupid and dangerous. God has placed a hedge of protection around Marissa. I was awakened late at night and knew that something wasn’t right. Marissa was not at home. I was given the Wisdom of Solomon and found her quickly. The people she was with were all boys she works with. I didn’t sleep Tuesday night. I worried. I prayed. I cried. Wednesday, I told Marissa that I would not consider her consequences. I was just too tired and couldn’t think right. Marissa and I cleaned her room together. Working together is actually very healing. I slept Wednesday night and woke up with the following question running through my mind, “If Marissa had done this with teens she had met through any other activity except work, would she still be allowed to do that activity?” The answer is clearly no. Marissa turned in her resignation. I let her complete the schedule that is currently posted. I didn’t want her to burn bridges and not be able to get a recommendation. But, she is coming in for a landing. She has also been restricted for one month. I sometimes wonder what good giving consequences to a person with FAS does, but I have come to realize that life is all about a series of consequences for your actions. And, the truth is Marissa does learn from consequences, just not very quickly.

Marissa couldn’t handle the social pressures of work. She couldn’t consistently make good choices in a social situation. I don’t know if I am doing the right thing. The scary truth is that Marissa will be 18 in about 18-months. She will be legally considered a competent adult. Having good work skills is necessary to see Marissa become mostly independent. Marissa’s IQ is normal. She looks to the world like a competent near adult. When she turns 18, I will not be able to have her declared incompetent. She is not eligible for any services for the developmentally disabled. The diagnosis of FAS doesn’t qualify a person. Almost every state uses IQ to determine who needs assistance. Kind of my rule of thumb has been, “Marissa will have every freedom for which she can responsibly handle.” Marissa could not responsibly handle the freedom that came with working outside the home. I am going on gut instinct here. I pray that the feeling I have about how to proceed is from God and is not a decision I made in fear.

Many people, those who have never raised a child with FAS, will think that I should just give Marissa age appropriate freedoms. She is going to be exposed to people who wish to do her harm. She is vulnerable. She can make those mistakes while she is at home where her Dad and I can walk her through the consequences and help her to learn how to cope. Sadly, Marissa doesn’t learn from consequences the first, second or even third time. The other truth is that her physical safety is more important to me than her becoming independent by the arbitrary age of 18. My prayer is that keeping her home in a controlled environment will allow her to mature a little before she faces those choices again. Perhaps, just perhaps her wings need a little more time to become strong enough for a solo flight.