Finally, for our Jax, we have an official diagnosis. It happened this past November, as 15 professionals sat around a conference room table at our local hospital and discussed our Jax with terms like significant sensory differences, emerging verbal learning disability, adaptive functioning score, and mild facial features. Among other things.
One one hand, sitting there in this room full of people who had assessed my son and found that I wasn’t overstating the struggles he was having was a huge relief. On the other hand, hearing it, for real, coming out of the doctor’s mouth that my son in fact, has an organic brain injury from prenatal exposure to alcohol and officially had a Fetal Alcohol Spectrum Disorder (FASD) was harder to take than I had imagined. It’s taken me awhile to get through the sad to find the strong in me that fights each day to get her boy what he needs.
Jax, really in the whole scheme of things, is well off. He does have a brain injury, but really, one of the mildest forms. They assess growth deficiency, a specific set of facial characteristics, evidence of significant central nervous system dysfunction and amount of known in utero alcohol exposure. Jax was on the lower end of the spectrum. We knew that. And we are thankful. Knowing what little we know it could have been significantly worse.
But we still deal, you know??? We deal every day with the reality that our little guy has this struggle in his body and head going on all the time. We struggle with the knowledge that each and every activity we do may or may not affect him in a way that actually makes him hurt on the insides because the stimulation just overwhelms him. We face the reality that he will need us forever and always, even more than most people’s children, and that we have to take care of ourselves, because whatever else happens, we cannot die young.
And I admit to one other struggle and it is this… there are days I don’t want to face the reality of what he needs, of what has happened at all. I want to believe that all is well and he won’t struggle when he tries to be independent, that he has a significant chance of struggling with addiction, or homelessness, or behaviors where he ends up in jail. I want to hide my head in the proverbial sand and pretend he’s typical and I don’t have to change my expectations of him.
And then…then he melts down and I face the reality that he is different and that is just the way it is. Nothing’s going to change it. It’s permanent. We can manage his sensory issues, and potential learning disabilities and interventions and activities of daily living, and we can do that each and every day from here on out. We can do that. And maybe, with all the work, we will manage to get him to adulthood alive and with some significant meaningful relationships and activities in his life. I will fight hard. You bet I will. Hard.
But I can’t stop there. No, working towards getting what he needs is not enough. What he needs the most is for people to believe that he is who he is, and that is not a bunch of letters strung together to define his behaviors and learning needs. Jax is this amazing human being and wouldn’t be himself without the brain that he has, injury and all. I tell myself this every…single…day. It doesn’t mean sometimes I retreat to the fantasy world of wondering what he would be like if his struggles weren’t his own, but in the end, he is who he is.
And who is that? He is MY son, and he is funny, brilliant, good at chess (even if he can’t remember how to brush his teeth from day to day), a daredevil on a bike, and the monkiest of monkeys on the monkey bars. He keeps me laughing if he doesn’t make me cry. He loves me and loves settling in my arms when he needs the peace and quiet after an overloaded day. He is a boy with great potential to be an amazing young man. He comes with all sorts of abilities and talents that can and will, with our help, outweigh the struggles presented because he has an FASD.
He is first and foremost a person, and he deserves respect just like the rest of us. He may have disabilities but he is not his diagnosis. And I plan ~ and hope and pray that I can ~ to parent him as such.