A guest post from an adult with FASD, Leighann Ford. I saw the piece below she had written and it moved me so that I had to get her permission to share it. I am so grateful to the affected adults I have met. They are incredibly generous sharing their thoughts and experiences. They make me a better mom and advocate for my Little Man.
I think the saying that should be emphasized with FASD is one we''re all familiar with; "don't judge a book by its cover."
Sure, I look capable now...
And for a short while I may be...
But I cannot guarantee that long term I'm gonna be the woman for the job.
Don't judge me based off of the articulated roll of my tongue or the calibrated written word I put forth.
I will likely fall short of this as time drags forth.
And the thing I don't think people realize is how hard my self esteem is battered when I don't meet the milestones or the standard set forth by peers, teachers, parents, colleagues or spouses.
It breaks down my confidence and self esteem and I disappoint you, the person I so want to please more than anything.
I wish you knew how painful it is.
It can make or break me.
In both your eyes and my own.
I am hard on myself because I know my limitations.
I strive for MY best NOT yours.
Too bad they are both so different for if u could only see it through my eyes you'd really be amazed.
I thought Leighann's words expressed perfectly what I have been trying to explain to Little Man's school. (And what I seem to always have to remind myself of!) The fact that Little Man knows things some times or can do a task sometimes does not mean he can do it all the time. There gaps in his ability to retrieve information. He's not being stubborn, or willful, or lazy. He wants to do it. He WANTS to please. That is his nature. Sometimes he just cannot.
Unintentionally we punish people affected with FASD for their successes by not seeing that it may not be a sustainable state (or consistently achievable task) for them. The variation may perhaps be caused by memory issues or perhaps because the tremendous effort it takes to produce that result is just not sustainable for long periods. Either way its damaging to set them up for failure that way.
I am using Leighann's words to remind me (and my son's team) to do two things:
First, compare my son's achievements only to himself.
And second, remember that he is not going to produce the same results consistently.
And really, who does? We are, all of us, humans not machines. Neurotypical people may have smaller variation between their "on" and "off" days - but we all have "off" days. Compassion and help really ought to be our default setting.