In Their Own Words

“Do you still miss being in school?”

“Yes!”

“What do you miss? You get lots of time with your friends and it is time when you are free to talk and hang out rather than classroom time.”

“I want to be in drama and choir.”

I didn’t argue; I let Marissa be sad about missing out on those things that seem to be a normal part of the high school experience for many students. But in my heart I know that drama and choir would not have been part of Marissa’s high school experience. I fought hard to keep Marissa in choir during her last year of public school. Her IEP team wanted to take her out of choir and have her do an hour of “job training” with a “job coach.” (They wanted Marissa to clean the school while a paraprofessional followed her around.) Even if I was able to keep her in choir, she wouldn’t have been given the opportunities to sing that she has now. Her behavior was too unpredictable. What some of Marissa’s teachers wrote about Marissa in progress letters sent to me:

• She needs to come to choir ready to sing. She needs to leave her frustrations in the “hall” and try to follow teacher directives in class. She is a VERY good singer. Great voice.
• Marissa has become more and more off-task in choir.
• She doesn’t have good coping skills.
• Marissa frequently chooses to be off task.
• She doesn’t bring required material to class so is not prepared to participate.
• Marissa needs to develop skills and attitude for working effectively with others.
• She needs assistance with a majority of the projects assigned due to not paying attention to directions. I honestly feel she has the ability to do the projects but waits until the last minute due to not focusing.
• Marissa’s behavior is not appropriate in class or anywhere.

Marissa has partial Fetal Alcohol Syndrome. It takes her several seconds to process a simple direction. She cannot “ignore” the noise and activity in her environment. The hum of fluorescent light is a minor annoyance; a classmate writing with a dull pencil makes her cringe in the same way you and I might react to the squeal of chalk on a blackboard. She has developmental disabilities in areas related to paying attention to details, visual-motor coordination, concentration, abstract and visual problem solving. She scored in <5th percentile in object assembly. She once almost burned down our house assembling a lava lamp incorrectly.

So, let’s look at these real statements made by Marissa’s teachers and turn them into truths. Marissa does not choose to have atypical brain development due to prenatal exposure to alcohol; her damaged brain has difficulty staying focused and on task. Marissa cannot develop the skills and attitudes for working effectively with others. Marissa cannot leave her frustrations in the “hall.” Marissa’s behavior is very appropriate when her environment is controlled, expectations are clear and she is given adequate time to process instructions. She will probably always need someone else to help her advocate for an appropriate environment and explain expected or “normal” behavior. She needs adults in her environment who “honestly feel” that she can do the job after they have taken the time to make the instructions clear (and perhaps even writing them down). When a large task is assigned Marissa will need someone to help her look at the task and break it into smaller, more manageable parts. Marissa needs an uncluttered environment and help in organizing. She can’t bring what she needs to class if she can’t find things in her locker. Marissa cannot organize her locker; she needs help with locker assembly. The noise, chaos and activity level in the public school hallway is not “real life,” neither is lunch with 150 of your closest friends. In “real life” Marissa will not have 7 bosses who rotate every 45 minutes, each of whom has completely different expectations of her. 

Marissa would benefit from crisis counseling with a social worker or psychologist in the school when behavior problems emerge… Marissa should also be provided with the services of a full-time paraprofessional in the classroom setting with the exclusive duty of helping organize materials… Marissa should also be provided with individualized help in mathematics ~ Recommendations from neuropsychologist

Not one of these recommendations was ever implemented.

Related: See what it feels like to have FAS! Take this “fun” FAS Stimulation Test Analysis! Make sure the volume of your computer is turned up.

In Their Own Words is a part of Home Education Week!
Check Dana’s blog for links to other homeschooler’s stories!