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Meryl

I am a “type A” parent. I always wanted to go the extra mile for my daughter. She was loved and cherished from the time she joined our family at 15 months. 

However, by third grade it became increasingly clear that my daughter had serious attention and learning difficulties. As school and social relationships became more challenging, additional issues emerged. These included emotional struggles. Relating to peers became increasingly difficult as my teenage daughter behaved much like a younger child. Peers did not want to spend time with her.

By high school, it was clear to our local public school system that they were not equipped to handle a student with so may learning, attention, behavior, and emotional issues. I credit an out of disctrict placement at the Perkins School, a 766 therapeutic school, for working with my daughter and helping her to complete her high school diploma.

What is it like to parent a 15-18 years old who behaves like a much younger child? My daughter could no longer live with me because she needed so much support. It took a team of people to care for her 24/7-including a psychiatrist who prescribed medications, a nurse to provide reminders about when to take medications, residential staff who were available to talk, to take walks, to release restlessness and anxiety; a therapist for weekly sessions; special ed. teachers to provide small classroom and individual support as needed to finish classes.

All of this support disappeared upon graduation. Substance abuse issues escalated as one group home after another failed to provide the structure, consistency and support that a young adult with an FASD needed. After all, she was “over 18” and a completely grown adult, right? This “adult” needed a lot of help completing a job application; keeping track of time; making and keeping appointments. She often refused to do these things, refused to apply for jobs or see a doctor.

Managing money was, and continues to be at 23, a task that my daughter is unable to handle of her own. She is not able to understand the concept of a budget; unable to reserve money to pay the rent or a cell phone bill each month. She has almost no work history.

Instead, she has drifted into a lifestyle I would never have dreamt that she would pursue: active drug and alcohol abuse; committing crimes such as theft, breaking and entering, assault and battery. I have needed to file a restraining order to keep her away from my house. I cannot live with the drug use and the people who keep her supplied. Nor [can I live with] the wild fluctuation in moods.

Since her high school graduation, my daughter has been unable to make the transition into adulthood. Instead she has needed to be committed to a psychiatric hospital several times during crises. She has been sentenced to probation and the court eventually gave up on probation because she could not connect cause and effect. She was sentenced to time in prison for theft and breaking and entering.

As her aging parent, I worry about what will happen to my “adult” child when I am no longer able to make a weekly trip to visit her in jail or a group home in a psychiatric hospital. What will happen when no one is calling to check on how she is responding to medications, or needs clothes or help transitioning into yet another apartment? Who will help her pay her rent, buy groceries for the week, make sure she keeps doctor appointments and takes her medications? Assessing who are appropriate “friends” and who is trying to take advantage of a lonely, vulnerable “adult”?

Make no mistake, parenting a “child” with FASD is a full-time job which does not diminish over time. It means being on call for emergencies that happen regularly; dealing with multiple agencies to try to put supports in place when there is very little which “fits” the needs of this seriously disabled population.

The irony, of course, is that FASD is an invisibly disability. You cannot detect the depth of disability  through casual conversation and observation. It is not like viewing a person who has difficulty due to the loss of an arm or a leg. The loss is in the brain, an inability to process and access information. It is invisible, but it is pervasive throughout a person’s life. It is heartbreaking to watch and even more so for the person who desperately wants to be “normal” but is unable to live as peers do. 

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