More than a Diagnosis

Recently, a suspicion that I've long harbored has been confirmed. (I hate it when I'm right) I've recently learned that I have a child on the autism spectrum--Aspergers, or ASD Level 1.

Bear with me, please. I'm still learning about this, still processing, still trying to put all the pieces together. And my journey is not the same as yours, so we're not going to agree on all points.

This is my daughter. She's fourteen. She's amazing. She taught herself to read music, to play the clarinet, to play the harp, is learning the guitar, has an imagination that can really, truly take you places. She's brilliant--I mean scary smart.

She is also willful, stubborn, opinionated, adamant, exasperating, frustrating, and utterly unique. She has a difficult time making friends, and a hard time understanding social queues or recognizing the need for observing certain social rituals. She can be incredibly inappropriate at times, and not understand why she's alienated you. She also has a very unique way of looking at the world, and that has led to some memories she absolutely swears are true, but never happened. I cite a conversation she had with her uncle last year. For weeks, she repeated to me that he'd told her he'd come back in a year--and even took her to the calendar that hangs in our kitchen to show her the dates. But a brief conversation with my brother proved he'd never done such a thing. But, to her, it happened, and nothing will shake her conviction of that. Even though she's wrong about it.

I've known for some time now that this particular child of mine required special handling. Not everybody "gets" her, and consequently she's been bullied, teased, ostracized, and criticized--and not just by her peers. We're talking adults too. I'm not mad. I don't blame anyone, because nobody knows better than I do how frustrating she can be. And I fully recognize I'm far more invested in her as a person than her drama coach, her church leaders, or her teachers. They don't have to put the effort into understanding her that I've had to do, because their interactions with her are relatively brief.

The Asperger's stereotype is a person who is a genius, a savant, but who can't conquer basic social behaviors. (They don't call it Asperger's anymore, btw, it's all part of the autism spectrum now) In many ways, this is my daughter. But she's far more than just a stereotype. She's a human being who has to learn how to make her way in this crazy, mixed up world. She's a beautiful child of God, just like you and me. She's my daughter, and like every other mother in my shoes, I will be her biggest advocate.

Is it Insecurity, or Something Else?

I've never fit in, though I doubt that comes to a surprise to anyone reading this. Chances are that you're here because you know me, personally. Most of the time not fitting in doesn't bother me, but there are moments when I feel relegated to the outside looking in. Alone.

I don't know if this is a side effect of a creative mind, or if it's something else. Nobody ever talks about this sort of thing--at least not with me around.

Here's basically how it goes: I'm with a friend, or in a group of friends. We're laughing and having fun and joking and it's wonderful. Until later. When I'm alone, that tiny voice inside says that my connection to them, my love for them, is stronger than their love for me. That they don't like me as much as they seem to--I'm projecting affection when it isn't there. I'm forgettable. Unnecessary.

Essentially superfluous.

I'm sure if we grab a nutcracker and crack open my psyche, we'd find this stems from issues imprinted upon me as a child. Okay, fine. But knowing where it comes from doesn't necessarily help.

So, that's how I feel. That's my weight to carry. What I don't do is demand, through direct or indirect means, that my friends validate me. That's a choice. I've recognized that I have this insecurity, but I'm not going to be the type of friend who is always so emotionally needy that she drives people away. There's only so much of that a person can handle, and most of us reserve that energy for family. Obviously, this doesn't mean I'm some kind of martyr, or saint. I just feel that everyone likes to know that they are valued. When I have those moments, when someone appreciates my contribution, it has incalculable meaning.

I guess the takeaway here is that we need to be free and genuine with our complements, because you never know how much you may help someone.

Day 162

A week ago, I went off my medications.

I did this for a variety of reasons, but the primary purpose was to get a base line of my symptoms and how I felt off of them. After FIVE months of dealing with the pain, dizziness, memory issues, anxiety, etc., I wanted to know how sick I really was and what, if anything, is triggered by my meds.

Like, what if my primary source of pain is from rebound headaches triggered by medication? What if I'm becoming chemically dependent on this crap, and just need to get away from it all? What if I've actually gotten better, but my meds make me think I'm still sick?

Guess what? No withdrawals. No shakes, no cravings. In fact, the only aggravated symptom was my extreme lack of patience caused by pain and still having to deal with people--this is not a skill at which I excel.

There are plenty of people out there who will argue that I'm not giving myself enough time off the meds to truly get a reading of how I am without them. You know what? You're all welcome to your opinions. I'm the one living with this--me and my family, you know, these poor saps who have to deal with me. Just so you know, I went to my doctor this week too. We talked about medication half life and how long it takes for all of it to truly flush from your system. I drank a TON of water this week--to literally aid in the flushing.

I can tell you that, yes, my symptoms are real. And miserable. For several days this week, the pain in my head was such that I could hardly move. Without the meds, my confusion and disorientation increased. My dizziness increased. I fell over today in the storage room, and really all I was doing was standing there. My insomnia is much, much worse.

This answers the important question of whether or not the medications are really doing anything for me. I've concluded that they are. Bryan and I talked today about when I was going to start the regime up again. Or if I was going to, because that was also a consideration. It's hard, because I hate taking so many chemicals. But, during my recovery, I need to be as easy to live with as possible. I can't give my kids a short-tempered, constantly-in-pain couch potato, can I? How is that fair for anyone?

I've learned a lot this week. Mostly, that this really stinks. The worst thing is that nobody can tell me when I'm going to be better. Though she didn't tell me (ever--I had to learn from my regular Dr), the neurologist DID diagnose me with Post-concussion Syndrome. Look it up. The Mayo Clinic website has some great info about it--mostly what they don't know about the condition. Huzzah.

Lately, I've been dreaming of peaceful beaches and ocean views. I can't travel anywhere, but the thought appeals. Perhaps I'm just looking for an escape, but I can't escape my own brain.