Tomorrow the race car man has a very long evaluation to do.
When his teacher wrote us to say that he was not showing any behavioral advances in school and that she felt something was missing from his diagnostic picture and definitely his medication toolbox, I stopped procrastinating and got on the phone with the insurance company.
The child psychiatrist who also manages Amazon Girl’s medication spent a half day with us, and we walked away from that appointment with a prescription for an anti-anxiety medication. In just days we saw major improvements both in his ability to be more compliant at school and in the frequency and severity of his sensory meltdowns.
This second evaluation will give me a much clearer picture of where we will need to approach behavioral therapy from.
I tell my kids frequently that I’m the luckiest mom in the world, and I believe that with all my heart. There are times that their behaviors are irritating, when its easy to lose sight of the essential truth, that they are each unique and perfect in their own way. While I like to think they embody the best traits of both their father and I, its probably more accurate to say that in two separate instances, our mutual DNA combined to bring something entirely new and special to life.
Its easy when you have lots of doctors and diagnoses to get lost in the land of labels. We need to have names and labels for our disorders, for our behaviors, yes. But my child is much more than his labels. His labels do not define for you at all the nature of who he is and what gifts he possesses within him. My daughter’s labels do not come close to describing her enormous love for others, her creativity, her joy.
Too many people look just at the labels. Or they look at the behaviors the labels describe, and they make judgements without expanding their knowledge of the actual person wearing the label. There was a strong reaction in the special needs community recently to some negative reviews of the film Extremely Loud and Incredibly Close, a story about a nine-year old boy whose father perishes in the 9/11 collapse of the World Trade Center. Although the book on which the film is based and the film itself never specifically say so, the character displays many behavioral traits that indicate a spectrum disorder – odd speech patterns and tone, difficulty with social interactions, extreme sensory reactions.
The review that received the most negative response was from David Germain, movie writer for the Associated Press. His review appeared December 19 at SFGate.com, the online home of the San Francisco Chronicle. You can read the full article here, but the salient points are the following direct quotes:
”Newcomer Thomas Horn…is a mixed bag, holding his own among the adult actors, but, through no fault of his own, forced to behave with excessive shrillness much of the time.
That’s because his character, Oskar Schell, may or may not have Asperger’s syndrome, a mild form of autism (his medical tests, we’re told, were inconclusive). You make allowances in life for people you encounter with autism, but spending two hours with a fictional character possessing autistic qualities can be grating.”
And those are the kind of people I dread my kids encountering. The people who can handle special needs for a few minutes, but lack the compassion or the inclination to “see through” behaviors to the kid inside. The kind of people who can’t spare five minutes to try and comprehend that a person is more than the rhythm of speech they employ or the pitch and tone of their voice.
How much of a self-absorbed narcissist do you have to be to find the struggle of a child who has just lost his parent irritating because he doesn’t happen to sound right when he’s speaking? How little humanity do you have to have left in you to NOT find this kind of story compelling?
Does it take some patience to look past my children’s behaviors? Often, yes. But you know what? It takes patience to be a human being. Whether you are dealing with people who are differently abled, who have mental health or neurological disorders, who are ill with a terminal or debilitating disease, you ought to be able to have a little patience. You have to have a little patience to drive through a toll booth or wait in a line at the grocery store. You need a little patience to cope with an aging parent who isn’t at his best now, but who is still a person you love deeply. You need patience to try and go anywhere with an absent-minded spouse who can’t find her keys, her coffee cup, her cell phone. You need patience to make it through a work day with people who are crabby or uncooperative, who didn’t do the things that you asked them to or who made a mistake that cost you time and money.
So even if we end up with another label tomorrow, it won’t change who my son is. It won’t change the love and respect I have for him. It won’t change anything but the ways in which we try to help him succeed. Lets have a little patience for my boy. Let’s look past his labels to his bright mind and unquenchable spirit. Lets do that for every child, neurotypical or not, able-bodied or not. Do it for me. Do it for you. For all of us, lest we lose our humanity.