Always and Never

“Well, he’ll never be without sensory issues. It’s just to what extent, we wonder? It’s that central nervous system and the way it’s taking in information, you know? He’s just one of those kids.”

“He’s always going to have the social issues. On top of everything else he has going on he’s really just a very shy kid.”

The sentences bounced around in my head as I exited my son’s IEP meeting. The gust of air from the slammed car door still lingered as I finally noticed myself en route to Starbucks.

He will always be…
He will never be…

I thought about my own life. I used to be hot in a quirky blonde-with-almond-shaped-eyes sorta way. Tan. Made a lot of money, too. Used to have great shoes. Gorgeous clothes. Took fantastic vacations.

Always and never.

I’m not hot anymore. I’m cute, don’t get me wrong. Holding up great, actually, for someone who sleeps 4 hours a night, considers caffeine a food group, and thought Ban De Soleil and Coppertone should be a part of every thoughtful girl’s skincare regimen. I just got my first official paid writing gig and I make less now than I did when I worked my first real job out of college, in 1994. All my clothes are from Target because it’s the only place I ever go to shop. My vacations are no longer at spas in Scottsdale. Instead I see pediatric neurologists and geneticists in Cleveland. Gastroenterologists and homocystologists in New York, and mitochondrial disease researchers in Texas. I wear practical shoes.

Grande latte please. Nonfat, extra foam.

I wondered, as I reflected upon what had been true for me, but is no longer, why these professionals made such permanent and definitive word choices.

Always. Never.

Unlike many folks I know, I do not regard the IEP process with contempt. It is necessary to determine services for my son and evaluate his progress. I appreciate his school and their support staff. I’ve never needed legal representation because they have never given me a reason to retain counsel. My son’s teacher is nothing short of phenomenal. Yet, no matter how great the individual players may be, they still have to work within the system.

Systems, for efficiency’s sake, only recognize always and never. Not sometimes, and, no longer. I sometimes miss my spa vacations. Especially when I have been up all night with a vomiting 5 year old little boy whose body is trying like hell to eliminate the viruses that are causing his neurological problems (a frequent occurrence). I sometimes miss the grand pre-dotcom-bust paycheck, when I determine the right learning/therapy program for him costs upwards of 65k a year. I no longer miss the great clothes and shoes as I now see them for what they were. Distractions. Don’t get me wrong, looking good is fabulous and feels great! But, if I don’t hit on that “perfect” outfit two aisles in, I sure as heck shan’t clear my schedule (as I have been known to do in the past) to hit every shop on Michigan Avenue looking for just the right neckline and heel height. No time.

At this moment, I realized it had genuinely not occurred to me that my son would always have sensory difficulties. It had never occurred to me that he may never overcome his social ineptitude. My realization turned into ruminating and the ruminating led to rage.

“He listens to one step commands very nicely.” The intended compliment shot across my mind’s eye in bright Vegas-y letters. The flash (smiley professionals all nodding in agreement, making eye contact and gesturing enthusiastically) was meant to soften the next blow. My son is functioning solidly as an 18 month old in all categories. He cannot go to the bathroom on his own, he cannot put his coat and shoes on, he cannot stand in line. He cannot feed himself consistently and he cannot hold a pencil for more than a fraction of a second. He is massively delayed. The System perceives defects. Significant deficiencies. Anomalies. Of course, I am his mom. I am well aware of these things. But, I do not judge him by them. I do not execute official documents that verify these facts for the general public. I do not measure his victories and portion love in precise allotments according to his progress. Our home is the one place in the world this scrutinized child will not be evaluated.

Always, never, and now…cannot.

To the System, my beautiful boy is a stack of papers. Reports. To date, 1,243 pages, academic. 3,978 pages, medical. Where does he fit? It’s a perplexing question because there are so very many of him. So many in fact, the System(s) have no idea what they are going to do with them. Except of course, catalog their deficiencies and give them a place to go so exhausted moms like me can rest for a few hours. What happens when they grow up? They move into the next system and then the next. These systems are not nearly as diplomatic as ours. Parents graduate from caseworkers to parole officers. Their children are lumped in with others who defy categorization in an entirely different way. “Don’t get ahead of yourself , Rev.” you might be thinking. My mantra for the past three years has been “moment by moment, we’ll get there when we get there.”

My son is 5. We set goals. We have reached our first “there.”

The reports say this is it. This is where we are. They say so. The System says so.

Next I did what any respectable Thinking Mom would do. I sat in my car and sobbed a Diane Keaton in Something’s Gotta Give, caliber sob. I pounded the hell out of my steering wheel. I screamed a little. Then I regrouped and came to a conclusion.

I do not. I do NOT say so. I DO NOT SAY SO.

I am not disputing the school’s findings. I am not negating their data. I am saying it is simply a catalog of current information collected about my child. Temporary observations. It is not enduring, it is not permanent. It is impermanent. Fleeting. Momentary. Dust in the wind.

I have far, far too many friend’s whose children have lost their diagnoses to believe otherwise. We are on the right track. Progress, even if it is slow going, is still progress.

People change and evolve. As much as the mainstream medical community does not want us to believe, even science…real science, changes and evolves, as well. Nothing remains the same. Nothing.

There is only one thing our son will ALWAYS be – and that is our amazing child. We will NEVER give up on him. He fights harder than anyone I know – just to live. Just to tolerate his experience on earth. Alleviating his pain is an endeavor we CANNOT abandon. We will not give up. Revolutionaries never do.

– The Rev