Dear readers, I regularly engage in Gallows Humor as a coping mechanism, so if this tends to be offensive to you, you might want to move on and end this relationship before someone gets hurt. (In fact, Wikipedia just informed me Gallows Humor is part of my heritage, so I really can't help it). I probably will cry if you write a comment about your child's very real tumor or syndrome and how it's no joking matter. I deeply realize this. I apologize in advance.I just got good news from my daughter's doctor...news that any sane person would celebrate. But I had a disturbing reaction. I was sorta/kinda disappointed. Just a little, teeny-tiny bit, I promise, but when I heard that her MRI results were "completely normal," my stomach actually lurched for a brief moment before the relief kicked in.
Some background: The reason for the MRI was to rule out any serious medical cause for her recent precocious breast development and equally disturbing increase in prolactin levels. She's 7, people! While a tumor on her pituitary gland was unlikely and the culprit was almost definitely Risperdal, I was all for an MRI because: 1) unlikely occurrences are my specialty; 2) "wait and see" has rarely worked out well for us before; and 3) something is definitely amiss in that girl's head!
So, while I'm glad to avoid yet another brain surgery in the family, I can't help but be a wee bit disappointed - and skeptical - that all is "completely normal" in that gorgeous head of hers. It's just not.
I know I'm not alone in my warped sense of reality. You see, I bumped into a friend yesterday, and traded autism war stories... filling each other in at our usual breakneck speed on schools, therapies, and anecdotes about whose kids were nuttier this week.
So I told her about the MRI and that I was anxiously awaiting THE phone call with the results. She said exactly the right thing to comfort me:
"You might have a tumor? No fair! Why can't we have a tumor!"
"Oh, not only that," I added. "We might even have a new SYNDROME!"
"What? What syndrome?"
I explained that my doctor thoughtfully posited this week that my daughter's behaviors sounded more and more like another of his patient's...who was recently diagnosed with Smith-Magenis Syndrome. Again, it's a long shot since genetic testing years ago probably would have caught it, but it was something to potentially explore.
Before I'd even finished my explanation, my friend was on Google.Of course we don't want our children to have tumors and syndromes. But boy do we want explanations, answers and real treatment options with predictable outcomes. It should go without saying, but it might not, so please know that we love our children and accept them the way they are and will be. But as parents, we also want to give them any tools and resources within our reach that could help them develop, learn and grow to their own best potential.
In our jaded way of thinking, theoretically, a tumor - and correlating symptoms if you ask House - could be removed. Many narrower diagnoses come with a library of medical research, literature and clinical data. But this label autism? It's a spectrum, alright. A broad, broad spectrum. It's a big bucket of unknown! In fact, as we speak, the American Psychiatric Association is rewriting its criteria.
We have to wonder how ASD can describe so many children who present with so many different affects. We all know that "if you've met one child with autism, you've met one child with autism." As a parent seeking answers, that doesn't do much for me.
And what the hell is PDD-NOS anyway? (Okay, I notoriously have said it's a lame diagnosis given when a doctor doesn't want to break your heart with the A word. Sorry.) "High functioning," really? If you're a school, shame on you for using that lazy term on your website. It's autism, damn it. If you don't want my kid there, just tell me.
Sometimes, I am lucky enough to have people ask me, "Are you sure she has autism?" (Inexplicably, it makes me angry though...because any "non-autistic" behavior is due to years of blood, sweat, tears and therapy - and her constant hard work.) I realize I really have no idea what she "has."
Sometimes, I am lucky enough to have people ask me, "Are you sure she has autism?" (Inexplicably, it makes me angry though...because any "non-autistic" behavior is due to years of blood, sweat, tears and therapy - and her constant hard work.) I realize I really have no idea what she "has."
So when this friend and I consider our own children on the spectrum - often way, way on one side of the spectrum - we do have a little "disability envy." We're kind of jealous of any medically sound explanation; ideally one that is verified by objective medical data like a chromosomal variation, medical lab test or even (not really) a tumor.
Recently, a father of a newly diagnosed "syndrome" child unknowingly validated our shameful feelings. He said that finally getting a diagnosis did not necessarily bring with it any major revisions to his kid's treatment, but it brought explanations and reassurance. It helped guide realistic expectations of their child's capabilities and challenges. He said it made him more patient, understanding and confident in their actions, and even helped their child feel more comfortable with themselves.
It gave him a road map. So, we won't always like the destination (and I am a firm believer in relocating if necessary - screw you, Holland), but I can't help it: I would really, really love a road map.
