Monday, January 08, 2007

Future for Children with FASD

What happens to children with FASD when they become adults? If they are unable to learn from consequences and apply knowledge to future behaviour, how will they function in society? What can be done to help them?


Anonymous Anonymous said...

Kari, who works for an angecy that educates and supports families with children with FASD, writes:

Great question…wish I had all the answers but I will share with you what I do know and what I hope for with my children. That “bad fit” between the person with FASD and society is the cause of the problems known in the FASD community as “secondary disabilities” (mental health problems, homelessness or joblessness, problems with the law, disrupted school experience, drug and alcohol use, pregnancies, etc…) We cannot fix the brain damage caused by alcohol use during pregnancy (Fetal Alcohol Spectrum Disorders) but we can make the environment more supportive and therefore increase the chances of good outcomes.

The key is for the person with FASD to have supervision and help making decisions (an “external brain”) but families often need help doing this and our support systems typically don’t offer that help unless there is significant cognitive impairment which is often not the case. Therefore, the service provider by default often becomes the prison system.

Our kids with FASD will need supports in schools that keep them from experiencing the kind of frustration that causes them to drop out, get expelled or start self medicating. They need advocates who will explain to the teachers that this is a processing problem with the brain and the resulting behaviors are often not willful and defiant acts even though they may appear to be. They need IEPs that meet their needs. They need personal care attendants. They need job training, but probably even more importantly they need job coaching (reminders to get bus passes, reminders about the schedule, ongoing reminders at work about staying on task, help filling out and turning in timecards, they need help managing their frustrations at work, etc…) Supervision and structure can help to keep them out of trouble, but convincing an 18 year old that they should not go to the mall alone is no small task. Society tells them that having an 18 year old body is all it takes to be an adult.

The good news is that there appears to be a maturation spurt that occurs later in life, often in the individual’s 30s. Keep in mind that the person with FASD is often functioning at half of their chronological age. The 30s then become the teen years. Learning takes place over the years but it is often slower and lessons must be learned many times before they are absorbed. An understanding spouse might become the external brain at some point…someone to remind them that bills need to be paid before they buy a new bowling ball, for example.

Not having good judgment, not having the ability to apply consequences to behavior or generalize your learning, being vulnerable and impulsive…all often result in disastrous outcomes for so many people with FASD. I hate to think of my kids being included in those secondary disability statistics, but the chances are very real that they will be. But not without a fight first.

9:20 AM  

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