Tuesday, July 15, 2008
The good, the bad and the ugly.
It's easy to share the fun stuff - the trips, the funny stories, the cute pictures, the parties and celebrations. You know - the things we scrapbook - the things we love to remember. But what about the reality of our lives? It's sometimes not pretty but I'm going to throw it out here anyway. Haley is really struggling with a lot of things right now. Most days her behavior is really poor and we don't know how to help her. I wish it was as "simple" as the medical diagnoses. If it was just that, I'd feel confident. But the social/emotional/behavioral stuff is kicking my butt. It's so hard not to take her attacks personally, yet I know it's not truly personal - I just happen to be with her 24/7 so I bear the brunt of it. It's so hard to continually garner all of my patience and resolve and love, to speak gently to her and act gently with her when she's raging at me, kicking me, hitting me, spitting on me and then to have her scream at me to stop yelling at her, stop hurting her - I know she's not in control of this behavior but it still hurts. It's horrible to feel like you can't help your own child and that they see you as the aggressor when you're doing everything in your power NOT to react to their rage. The NLD diagnosis does explain a lot of it but how do we help her? I've read a ton of books and websites, I've spoken to other parents dealing with this, we see her specialists regularly, I pray. Then the strategies we implement don't seem to be very helpful and it feels like a losing battles some days. It's stressful and overwhelming. And then we have a good day and I feel hopeful again. One of her doctor wants to add more medications but we don't feel comfortable with that. He also keeps saying that this is just life with a brain injury, that the main thing that's consistent with brain injuries is that brain injured people are inconsistent. I keep feeling that there has to be something we can do to help her cope with her life better. She is such a beautiful little person - so full of wit and sweetness and curiosity and fun. She's bright and capable. She's so funny and has such a wonderful mind. She has a truly astounding memory. She is very musical and artistic. She loves to create things. She brings so much happiness to us. But she's also significantly disabled in invisible ways that impact practically everything in her life. She misinterprets most social situations (I could even say most interactions with anyone else which is at the top of our frustrating list today) and is avoiding eye contact more and more. Emotionally, she's getting colder and less empathetic. In many social situations she is pretty much non-responsive - even with people she knows well. She is so rigid and obsessive in her thoughts. She fatigues so easily. She has very few coping skills, very little attention span. Her vision and visual perception are impaired. She has poor coordination/motor skills. She has numerous sensory integration problems. Lots of anxiety. The list goes on and on and on. And yet you look at her and she appears so typical. People just have no idea how challenging her life is - for her and for those of us that love her so much. It's heartbreaking. And yet she is a fighter and so are we. I know things will be okay. But I also know that our future is not going to be easy. And that's hard to face - even with strong faith, a loving and supportive family, great friends and great medical and therapeutic resources.