Progress

When the head of the team that diagnosed my son with autism met with my husband and I to report their conclusions, she referred to me as Fletcher's "anchor." She and I both teared up a little as she recalled a moment in the evaluation when he began to break. He didn't know or trust her, didn't want to perform, and he couldn't tolerate all of the changes being forced upon him.

He screamed and cried, and eventually melted into the floor with a red face and crocodile tears. It was awful.

My job for the duration of the evaluation was to act as if I wasn't there until he reached out to me for comfort, and I was successful in this task even through the meltdown. When he composed himself enough to reach out, we made eye contact. I forced a smile and thought, "I'm sorry. I can see this is torture for you. But you are capable and strong, and you have to do this. I'm here when you need me." He walked over to me, laid his head in my lap, and began to calm down. Eventually he performed some for the psychologist, who said: "It was in that moment I realized you are his anchor. He didn't withdraw completely or attach himself to an object. He turned to you, and that's a beautiful tool you need to use to help him."

The compliment and insight behind it will stay with me throughout my journey, but I will not always have that role.

Fast forward a couple of months. We had gone to the doctor for yet another ear infection, and we had to wait for over an hour (a nightmare for any 3 year old). Fletcher fixated on a toy that belonged to another child, and although he was ill, he handled it well at first. But when his efforts of pointing and shouting what he wanted didn't pay off, he became so distraught I couldn't physically remove him without him injuring himself or me. The room was crowded; people were staring in obvious discomfort; and I was helpless.

 Right there, smack dab in the middle of the waiting room, I used a restraint method taught to me by one of his therapists to keep him from bashing his head against the tile floor and mostly protect myself. After several minutes of screaming and fighting me, he was exhausted, so I lifted him off the floor (still restrained) and carried him to our room.

We were both defeated and heartbroken. (There is some trust lost between a parent and a child when the child is physically forced to do something against his will. For me, that is the worst part of this process: seeing the betrayal in my child's eyes when he doesn't understand why but obviously feels violated.)

The symptom, the disorder, the label…all of that b.s. was winning in that moment, and my sadness quickly turned to rage. I looked at my confused, forlorn son, who was again reaching to me for comfort. I knelt down and squeezed him tight, looked at him and, "You, listen! We are a team. We will get through this together! You are amazing, got it?!" That was 3 months ago.

Today I walk with my son, holding hands, in a parking lot, carrying only a remnant of the fear that he may bolt. I watch as he approaches a slightly younger child at a local farm park and strikes up a conversation with her about the turkeys. I hear him express concern for his younger brother when he falls or is upset, sometimes even looking up or leaving an object of obsession. And I see him brave forced changes in his world, coping in ways that are more socially acceptable than tantrums.

The work we have been doing together as a family and with select professionals is paying off, and I am beginning to celebrate the fact that I will not always be Fletcher's anchor. Right now he needs stillness, safety, and stability; much like a ship resting in a harbor. But someday he will sail. He will explore the world unencumbered by me or anything else that would try to hold him. Someday I will instead be his lighthouse--something to help him gain perspective if his world grows dark, and simply here when he needs me.

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.