The Curse of the Label

He's a little off today. There's more daydreaming and a sort of checking out; more obsessing over objects and cartoons; and less eye contact and focus on people and voices. He looks a bit out of place, like he's somewhere else in his mind.

I know this look, because I've worn it myself, and I bet most people do occasionally. I wear it sometimes when I'm tired and my eyes need a break; so I stare out the window and let the natural light draw me out of a moment of chaos. I wear it when I'm nostalgic, or contemplative, or when I just want to be quiet and soak up my surroundings and the moment. And I've worn it extensively when lost in an abyss of depression. That's when I refuse to come out or wake up, because being lost is more appealing and comforting than reality.

He's tired today and not feeling well. It's the end of the week, and he's worked hard in school all week. He's shown signs of progress and improvement. Together we've all been learning how to handle transitions, and most have gone beautifully this week with minimal stress. We have pushed him a little, and he has risen to the challenges. He deserves to check out for a while. He's earned a bit of reverie and solitude. If he is like me, it will be a tool he uses to recharge. But....

What if it's a sign of regression? What if he's already beginning to lose the skills we've been developing this week? Or worse, what if he'll be losing skills he acquired ages ago? These are questions I never would have asked before the label.

And what if he is like me? What if--on top of everything else--he is also plagued with depression. Dear God, I hope not. I hope that--if he is never potty trained or a high school graduate or independent--he will at least be happy. The fear of passing down my melancholy makes me want to do everything in my power to get him to, "Wake up! Come back to us! Snap out of it!" Now.

I am optimistic about my son's recovery from the "A" word. I know he is gifted, and he is a gift; not just to me or his family, but I believe he is a gift to humankind. He has a purpose and work to do in this life, and I will punch anyone who begs to differ in the throat. He has already affected the lives of many in a positive way. He is a joy, and he will continue to be so. I don't doubt that for a minute. And o.k., his lot isn't that shitty. Overall he is physically healthy most of the time, and he leads a very full life. But that doesn't make the questions or fear go away or his struggle any less significant.

I will become more comfortable with this. I am determined that I will not always succumb to the fears that come with the label, every time he has a breathing treatment and goes a little wild, or when he's tired and wants to withdraw. I won't. For one thing, typical children do those things; but more importantly, I will not allow myself or my family to become slaves to the fear of the unknown! But the wound is still fresh, and even my general knowledge is still so limited.  So I will allow myself to ask the questions today and acknowledge the fear and sadness; and then I will quickly move on to this beautiful spring day, full of promise.

If I had a billion dollars...

Last week my oldest son was diagnosed with autism. Two days afterward I heard a commercial advertising a March Madness bracket contest to win a billion dollars. I had a moment of clarity about how much my life had changed in 48 hours as I began to daydream about what I would do with that kind of money.

1. I'd make sure my son received the recommended number of hours of ABA therapy, which is 30 per week. Seems like a lot, huh? It is; and we will likely be "approved" to receive less than half of that. But if I had (almost) unlimited resources…game on!

2. I would hand pick all of my son's therapists and never ever use state services. And before you get all up in arms about my anarchist viewpoint, let me explain: resources are limited, and even those who work in the field admit the bureaucracy is tedious at best. I want to be in control of my son's care. I want it to be tailor made for him; and I don't want to be limited by resources or availability, or have to justify why he needs something. I could have all of those things...if I won a billion dollars.

3. I'd hire a holistic pediatrician for both of my children, insurance provisions and costs be damned. In fact, I might retain two...or maybe even more, and hold monthly committee meetings on my sons' health. Why not?

4. I'd employ a personal chef to cook healthy meals that meet my son's taste, color, and texture requirements, and provide him the nutrition he needs for healing. (Right now he will only consume 2 different textures of food and 3 different colors. This limits his menu to about 5 items out of all the food available in all the world.)

5. I'd compile a list of the places in the world which offered the most promise for autism research and treatment, find the one best suited to our particular needs, and move there.

6. I would design a college internship program around researching the prevention of autism in my younger son, offering course credit to a research team of 4-5 individuals. I guess I'd offer a small stipend too, but even a billion dollars only goes so far! And college is all about the experience anyway, remember (or not)?

Once we were out of the woods for my family, I'd continue the program on a much broader scale. (See number 7.)

7. In addition to my personal research team, I'd privately--with private dollars--fund a private foundation devoted to autism research; and we'd only accept private donations from private individuals. My billion dollars, my rules.

8. Finally, I would sit back, relax, and really enjoy both of my children. I would stop worrying about the things that could be done, or haven't been done, or need to be done.

I would no longer lie awake at night pondering my oldest child's uncertain future (Will he need full time care? Will he be self sufficient? Will he be happy and fulfilled?); or obsessing over preventing the same diagnosis in my younger son, because I would know I could provide for them both. And I would celebrate the developmental peaks and brush off the valleys, knowing that everything really would be just fine.

My Ann

"I thank my God in all my remembrance of you…"

I have lost someone I love. I am not her daughter, spouse, sister, or grandson. In fact, I have not seen her in years. But I am bound to her by love, blood, and life experiences. She is my kin, and that term carries more meaning than a yearly Christmas card or exchanged pleasantries.

My first memories of Ann are from when I was a small child. I was painfully shy, and I approached our family gatherings with much apprehension even from a very young age.

One year, while I was still small (maybe 6 or 7, I can't quite remember), my Mom told me she was going to get some coffee and dessert. I was paralyzed. I had to decide quickly which was more horrifying: walking through the line with my Mother and having to speak to everyone, or being left alone while she acquired refreshment. Mom suggested I wait for her on the couch. It seemed pretty safe. I would be sitting out of the way; and if noticed, I could back myself into a corner and cover my face with a cushion.

I approached the seating area tentatively. Thankfully, most people were visiting or getting food elsewhere in the house. But I remember Ann being there, on the same couch--which seemed huge at the time, but was probably quite small in reality. I remember sitting beside Ann, but not too close in case I needed to bolt. I have no idea what she and I discussed, if anything at all; I simply remember feeling safe. She didn't invade my space. She may not have even addressed me directly, but I knew immediately (even as a young child) that she respected me, just by her way with me. (Her sisters have always been that way too.) From then on, the parties were much easier to survive, having another ally in my repertoire.

Many years later, when my Memaw was in the last days of her battle with colon cancer, Ann and her husband Charles came to the house (traveling quite a long way) for a final visit. I was a mess. I don't think I really showed it, but a huge piece of my life was about to move on from this world, and I was beside myself with fear and grief.

I had returned home from college the previous day to find the woman who was once my source of far too many things to list--including my earthly experience of the Divine--a battered and bruised, poisoned shell. Cancer sucks, y'all! She was in and out of a coma. To me, she already looked dead. I walked into her room and immediately walked out because I didn't want her to see or hear me fall to pieces at the sight of her. It seemed I would not have an opportunity to say "Goodbye;" but I was wrong. Later that day, right before Ann and Charlie arrived, Memaw returned to us for a little while. I was relieved and elated.

I accompanied Ann to pick up food for our family that evening. She was still recovering from a brutal vehicle accident; and though I don't remember the details of her condition, I do remember that she drove with a special device on the steering wheel because she did not have full use of the only arm and hand that were (at the time) not paralyzed. I mention this detail because--to me--that's just the type of person she was, particularly when her (extended) family needed her: unstoppable.

We had a nice visit in the car, though not much was said between us. I suspect she recognized my need to escape the situation briefly to process some things, while still being present in a way. As we were pulling into the driveway at my grandparents' house, I was telling her how thankful and happy I was that Memaw had awakened briefly, and that we had seen each other and talked to one another at least one last time. As long as I live, I will remember vividly what happened next. It has always been one of the most important elements of my grief and closure in that phase of my life, and it still brings tears to my eyes. Ann looked at me, smiled lovingly and sympathetically, and said, "She woke up to see you."

Anyone could have said that to me, but it would not have been the same. Ann meant it. Ann knew something--a lot of things--about grief and heartache. She had both professional and (more importantly) life experience in harsh reality. She had worked with and studied patients in comas. She had been in a coma not too long before that. And she had said "goodbye" to both of her parents. She was offering me sincere comfort, not a watery platitude.

Ann was many things to many people. I was never close enough to her to experience any real flaws or know many details about her every day life, or its joy and pain. But she remains a role model to me. In my mind and heart, she still epitomizes strength. In fact, there's a lot of strength found in the genes of that side of my family. She had a beautiful smile and a great laugh; and I know these things about her because she always seemed to be doing one or both of them when I saw her. And from when I was very young until the last time I saw her, she always treated me with respect, as an equal. I have always viewed her as someone with wisdom, but she never ever treated me like a child (in the sense that some adults treat children as an alien subspecies to be patronized or dismissed).

These are my memories of her; my perspective of someone I love, which belongs to no one else. I am thankful to have known (and be related to) someone like her; and I want to be more like my Ann.