Extended Insights
NO, IT'S NOT FAIR
Extended Insights
Dec 1, 2005, 19:49

By: Dorthy Beckwith, Parent Educator
The National Family Leadership Council on Fetal Alcohol Syndrome (FASD),
Family Resource Institute Idaho Branch
Idaho Falls, Idaho

"It's not FAIR to the other kids."
"All he needs to do is TRY."
"He has to learn to live in the REAL World."
"If he doesn't learn to control his emotions, he'll get fired from every job he gets."

School had been going so well. For the first time since our huge uprooting from one state to another nearly a year ago, our 15-year-old son was coming home and telling us he LOVED his classes. His morning classes had been carefully chosen and we had worked hard to prepare him for what he would be doing in those classes. They were good classes for him…ones that allowed movement and hands on learning. We even had support for the teachers, a full time aide who understands FASD. Life was good!

Then the holidays came and school was out for two weeks. Of course, all the excitement and disruption in his routine meant that returning to school was going to be a rough transition as he adjusted to the change. Tony loves school, especially the social part, and he was ready for school at 5:30 a.m. on the first day back. Unfortunately, his trusted aide was sick. Tony made it through two days without his needed support; though I'm sure he tried the patience of his teachers. By the third day, Tony called and asked to come home because he was feeling very frustrated and anxious. He'd held it together as long as he could.

Tony's been taught to call us when he senses he's starting to unravel. We want him to be aware of his moods and take steps that help him avoid behavior that could be potentially disruptive if he were to stay in the environment. He doesn't abuse this method of behavior management ~ though it is too often viewed that way by some of his teachers. He wants to be at school. He wants to be normal. Unfortunately, his fear of failure and inability to keep up with his peers gets to be more than he can cope with sometimes.

A meeting was called. The words spoken by two of his teachers were intended to be helpful…After all, they are experienced teachers. They had no idea their words reopened deep and painful wounds. When I returned home, I vented my responses to their angry challenges.

IT'S NOT FAIR TO THE OTHER KIDS:

What's not fair is the fact that our son suffered massive in utero exposure to alcohol, crack cocaine, cigarettes and other drugs. Or that his brain and central nervous system are so scrambled that they keep him from functioning like a normal, healthy person. Or that he LOOKS like a normal, healthy person but can't function like one.

It's not fair when people use their healthy functioning brains to lay expectations on him that he can't readily process because he doesn't have a healthy functioning brain. Or that our incredibly athletic son is not able to participate in any group sports because he can't cope with all the thought processing and expectations that are involved in team sports. Or that he's keenly aware that he doesn't measure up to his peers no matter how hard he tries.

It's not fair that since he was a three year old, he has eagerly anticipated going to school only to discover it has become one of the most painful and challenging experiences of his life. Or that by the time he was seven he'd experienced so much rejection and failure that tears streamed down his face as he cried, "I hate school, and I hate recess because I always have too much fun and I always get into trouble."

It's not fair that he needs to spend his entire academic career in Special Education classes and graduate on an IEP. Or that he's in high school and needs a full time aide with him to be his "external brain" because the school environment will always overwhelm and frustrate him on a daily basis. Or that our teenage son has to endure much tighter supervision in and out of school than his peers do.

It's not fair that we continue to have to endure painful meetings when we've worked so hard and sacrificed so much in order to educate and advocate for the needs of individuals with FASD. Or that he continually gets reprimanded for his behavior when it is caused by his disability. His disability/behavior is what qualifies him for special education services under "health impaired." Or that he has to struggle every single day of his life with a devastatingly cruel disability that was entirely preventable!

If life was fair, he'd be an honor student, star athlete, earning money at a typical teen job and learning life's lessons just like his healthy peers. And last but most important: "FAIR DOESN'T MEAN EQUAL, IT MEANS ACCORDING TO NEED." We do what we do for our son because he needs it to succeed.

ALL I EXPECT HIM TO DO IS TRY:

I cannot imagine how it must feel to go to school day after day knowing that no matter how hard I tried I never truly felt successful or accepted. We admire him for hanging in there and trying, day after day after day…

His core disability traits are impairments in reasoning, memory and judgment. He acts in the moment of time according to what "conditions" surround him. When he was a little three year old in preschool he would run across busy streets and into orchards, or he would hide in closets, trying to get away from a troubling feeling he didn't understand.

In first grade, he tried to solve his problem of being stuck in a noisy, uncomfortable environment of a gym by climbing up and into a basketball hoop. He used poor reasoning and poor judgment and soon discovered he'd made his problem worse ~ he was scolded for refusing to come back down into the environment he was desperately trying to escape! His peers looked on as he was reprimanded for doing something he didn't understand was inappropriate.

He has humiliated himself on numerous occasions because in the moment of time when he's feeling miserable, he cannot process what's going on. His self-esteem is crushed when he gets frustrated with a project; as a result, he acts incredibly immature and unreasonable to his teachers or his peers. If left alone (so he doesn't become more distraught and triggered into becoming further out of control) he will try his best to get his emotions under control so he can process what's going on. If given the opportunity, he will always try to make amends and sincerely apologize for "acting like a stupid jerk." It's scary for him, too, when he loses control of his emotions and actions.

Those who don't really know him or understand FASD may look upon him as a near failure. We see success! We know how hard he's tried and how far he's come. We are very proud of him because he's still willing to go back to school every single day and try again knowing that his disability (behavior) may get him into yet another troubling or disciplinary situation.

HE HAS TO LEARN TO LIVE IN THE REAL WORLD:

He DOES live in the REAL world and it's not very tolerant or understanding about the reality of prenatal exposure to terratogens, especially alcohol. The massive exposure he experienced prenatally nearly took his life at birth. The disability traits he's left with continue to rob him of a normal, healthy life.

For many of our kids with FASD, it means a life of being misdiagnosed and misunderstood. It means suffering with chronic health conditions, struggling with learning disabilities, living in foster care and group homes, experiencing adoption failures, being placed in institutions and being part of special education and the stigma that goes with it. It means experiencing loneliness due to their poor ability to make or keep friends. It can mean finding themselves in trouble with the law when they naively follow unsafe friends. It means the fear of becoming homeless because they have such difficulty holding down a job. There's the very real possibility of being severely traumatized because they are easily taken advantage of and put into situations that they have no idea how to get out of.

Unfortunately, our naïve and vulnerable children too often experience the worst of the REAL world.

IF HE DOESN'T LEARN TO CONTROL HIS EMOTIONS, HE'LL GET FIRED FROM EVERY JOB:

We are keenly aware of this. That's why we're doing all we can to support him through these very important years leading up to transition into adulthood. Without needed supports and understanding, the lives of our children will collapse in a tragic heap before they even get there.

So, Dear Teacher,

He needs you to understand and accept his disability so he can have a FAIR chance that will enable him to TRY to function as best as he can in the REAL WORLD and, hopefully, HOLD DOWN A JOB so he can hold his head high because he's become a productive citizen.