But He’s Blind…

When we hear the word “disability,” we often think of physical challenges….someone who is blind, wheelchair bound, or deaf. Rarely do the “invisible” disabilities come to mind…FASD (Fetal Alcohol Spectrum Disorder), trauma, anxiety…these are the disabilities that affect children in profound ways, but no one can “see” the outward signs of these disabilities. There are no wheelchairs, sign language, or seeing eye dogs to alert you to the challenges they may face. What others do see are typically referred to as “behaviors” that are assumed to be within the child’s control. In reality these are actually “symptoms” of a complex disability. And parenting these children with invisible disabilities can be so exhausting.

I have been thinking a lot about the challenges I have bumped up against advocating for my son, who is diagnosed with several invisible disabilities, and how to explain these challenges to others. Here is an analogy I came up with that illustrates how things often play out….

Context: A blind child enrolled in a classroom with typical peers, and the conversation that ensues between the educator and the parent…

Educator: Today, I gave the students books to read and your son refused to read it. He started acting out and would not do what was asked.

Parent: Well, that’s probably because he is blind.

Educator: But he has eyes, and they are open. I think he just wants to do what he wants to do, when he wants to do it. Clearly he did not want to read, so he acted in a very disrespectful way.

Parent: But he’s blind…

Educator: I think we need to address his behavior. It is not okay for him to act this way, and I need to do something so that the other children don’t think that they can also act this way when given something to read.

Parent: But he’s acting that way because he’s blind. He can’t see the book.

Educator: You know, as I think about it, I believe he is really just trying to get attention. He does this at other times during the day. For example, when it is time to line up, he continually bumps into things to get attention.

Parent: Well, he is blind…

Educator: Yes, but everyone knows that there are chairs and tables in our classroom and that they need to walk around them.

Parent: But you rearranged the classroom 5 times since the start of the school year.

Educator: Yes, but I informed everyone when I did so. No one else is bumping into things when they line up.

Parent: But no one else is blind.

Educator: You keep telling me that your child is blind. I understand that, but I feel like he should be over that by now. We have set up a safe place for him, we have done everything to support him….but what I really need to know is when he will stop being blind.

Parent: (sighs with sheer exhaustion and pours herself a generous glass of wine)

RIDICULOUS, right?!?!?!?! Now delete “he is blind” and insert “he has an FASD” and welcome to my world. The behaviors my son exhibits are a symptom of his disability. They are NOT deliberate and willful! Would you say that the blind student is just disrespectful or hasn’t been parented well with appropriate consequences? If my child is “acting out,” it is because his brain (which has been damaged due to exposure to neurotoxins) is overwhelmed. He will never NOT have an FASD. He will always struggle with impulse control, with abstract concepts (math is getting more challenging!), with loud, chaotic environments, with academic tasks (he understands concepts one day and then struggles with them the next), with working memory…and when you add the trauma layer, he struggles to ask for help, to trust, and to articulate his feelings and his thinking (he quickly reverts to fight, flight or freeze). This is a disability…the behaviors are the symptoms. I don’t need you to do a Functional Behavioral Analysis…we KNOW why he acts that way. I need you to challenge your assumptions about “behavior,” to change the way you look at my child and the “behaviors” in which he engages, and ultimately to change your pedagogy to better reach his brain, which has been altered by exposure to neurotoxins. Just because you don’t “see” his disability or you didn’t learn about it in your teacher certification program (something we definitely need to fix!), does not mean he doesn’t have one.