April is Autism Awareness Month. April is also almost over. It's not that I've forgotten, it's just that I had really nothing to contribute.
Riley has a form of Autism. She has a high functioning form, which is a fancy way of saying that you can sometimes carry on a conversation with her. I'm kidding, but that's kind of the situation. She doesn't have some of the characteristics - but others she has in spades. She self stims, she's repetitive occasionally, she tantrums, and occasionally she's out of control. She avoids eye contact with all but her closest family. She bites, she hits, she screams and cries and acts like a brat.
Her form of autism is called Sensory Integration Disorder, or Sensory Processing Disorder. From the SPD website: Sensory Processing Disorder (SPD) is a complex disorder of the brain that affects developing children. Children with SPD misinterpret everyday sensory information, such as touch, sound, and movement. Depending on which type of SPD a child has, he may feel as if he is overwhelmed with information, he may seek out intense sensory experiences, or he might have other symptoms. This can lead to behavioral problems, difficulties with coordination, and other issues. Effective treatment is available, but far too many children with SPD are misdiagnosed and not properly treated.
This disorder makes for a rough life. Imagine, if you will, stepping out of your front door. You make your way to the car and get in. An individual with SPD steps out of the house. "Wow. There are birds. Can't you hear them? What sound are they making? There's some wind - feel it on your cheeks. My sister is breathing funny. I don't like the way these steps feel on my feet. Where am I going? Oh, there's a fly. I don't like flies - let me scream my head off!"
And on and on and on. There are some really good days, and then there. Are Not. Crowds are hard for her, noises are hard for her, late afternoon is hard for her. From the above website: Children with Sensory Processing Disorder (SPD) may suffer from anxiety, depression, aggression, or other behavioral problems. They may have problems with motor skills and other skills needed for school success. They may also be socially isolated and suffer from low self-esteem. Often they get a reputation for being a "difficult child." These difficulties put these children at high risk for many emotional, social, and educational problems, including the inability to make friends or be a part of a group, a poor self-concept, academic failure, and being labeled as clumsy, uncooperative, belligerent, disruptive, or out of control. Parents may be blamed for their children’s behavior by people who are unaware of this "hidden handicap."
Amen to that last statement. There have been many times that Riley has a break down - I can think of three this week alone - in public, and I've been stared at and given what I call "the old Italian Lady eye." (And I can totally say that, since we have family that fits that category, and I know what I'm talking about.) It calls doubt into my effectiveness as a parent. Even when I squat right down on her level, hold her face in my hands, and calmly repeat a hundred million times, "Eyes. Focus on Mommy. Look at Mommy", as she slaps me and spits at me and kicks me, and I try to avoid her hands and restrain her, I still doubt myself. My brain "knows" that she has a problem, that she's not a typical three year old, even though she looks like it. My brain is also stupid sometimes, and I just want to smack her and yell "STOP IT!" and sometimes I do and I always regret it. Yelling at her doesn't work, spanking her doesn't work, sometimes isolation does, but it's tricky to know if it'll work that time or not. There are days that just exhaust me, dealing with her. I still carry her in my sling, if she's really having a rough day. Those days my back hurts too. There are many days that I sit with her, holding her wrapped in her blanket, and struggle to hold back the tears.
I see her actions affecting my older kids. They become annoyed with her - when she's incessantly crying and whining, she can be total hell to be around. She can also be as sweet as pie. It's tricky to know which is on the agenda, and, in fact, the agenda changes on a minute by minute basis some days. Just now, she minced towards me with baby steps, peering at me through a magnifying glass and calling, "Hello? Where are you?" She's funny. Ten minutes ago, she was inconsolable, throwing herself on the floor and hitting her face because she forgot her boots outside. That wasn't so funny.
Autism is a tricky thing. On the surface, where most of us judge each other, it looks like a poor case of discipline. I've been told that before, by well meaning strangers. She's gotten so much better, though - she can tolerate so many more situations that she couldn't in the past. Part of that is therapy, and part of it is growing up. I'm hopeful that she'll continue to make improvements as she matures, but I'm bothered by the acting out and wonder how I'll be able to handle it when she's 8, or 12, or 16. She's officially not eligible for services from the state - she's made such improvement that she qualified herself right out. She's in a gray area.
The face at the top of this post is the face of Autism. It's a beautiful face. The face of my daughter.