Visiting Darkness
I love Erik so very much, but he is sometimes replaced for days or weeks at a time by someone I don't know. An unpleasant little tyke who argues with everything I say out of pure spite and rages when he discovers he will not get his way. Which is quite often. In the last week, we have gone from one time-out a day to 10 or 12. I have observed that this insanity usually is paired with a jump in his development and/or a growth spurt. While much of his intensely angry behavior is borderline typical, we have concluded that his reactions to our discipline or even our comments to him are definitely not. This is where things become frustrating and wear me down over the course of an afternoon. My state of mind takes me back to when he was an infant and cried nonstop. This is apples and oranges, I know, but I find myself in the same dark place I was before. Because I now am a veteran of this, I either turn myself off emotionally or further immerse myself in the mindless distractions I indulge in regularly to keep myself sane. This sometimes injures my personal relationships, so I try to keep it to a minimum. However, I admit that some of this damage is permanent.
Erik continues to toe walk to the extreme, although we have been unable to measure any increase in his height because he refuses to let us. With his growth spurt, his language has improved to the point where he can come to me and tell me what's going on in another room. That's new. Yesterday he told me the cat was scratching at the garage door. I told him he could let her in if he wanted to, and he disappeared. I waited a couple of minutes and then went to check on him. He actually accomplished this task (which surprised me, as he detests my cat). He is still generally unable to follow two-step instructions. He has also informed me his diaper is wet after a leak, which is promising, as I am hoping he will eventually submit to using the bathroom. It is refreshing being able to communicate this way. Having a two-way conversation is not only handy, it may actually save one of our lives at some point.
Amazingly, he continues to obsess about the day my car wouldn't start and is visibly anxious every time one of us turns a key in the ignition. He rages at Brian when he cannot watch You Tube videos of tractors, vacuum cleaners, ATVs, or washing machines. As soon as Brian steps across the threshold at the end of the day, Erik is on top of him and won't take no for an answer. He will continue to bombard Brian for hours with the same question and will throw a fit every time, as if he has never heard the word "no" before, after which he is placed in his room to rage without the benefit of witnesses. We do this over and over. And over. And over. And over. And over. Once in a while, he will change things up and ask if I am going to start the Jeep. I stifle a scream when I hear this question for the 50th time each and every day. There doesn't seem to be a solution in sight. Ignoring him or changing the subject doesn't seem to help much, although I usually distract him or ask him questions about something else to get us off the same tired topic. No, Erik, you can't watch tractor videos. Yes, Erik, we will start the Jeep at some point today. Would you like to play with trucks? This usually goes over like a lead balloon with Erik, and we begin the whole process over again.
Urgh.
Last night I watched the Discovery Health special on Kay and Flo, autistic savants. They have the amazing ability to tell you what day of the week it was for any date you provide. They are obsessed with Dick Clark and have met him twice. Just peering into their shared world was amazing and fascinating. On the flip side, however, the family members they live with are worn down and about to snap. Kay and Flo function on an elementary school level and are unable to live independently. They were teased so much that their mother kept them hidden from the world for years. The day Dick Clark's $100,000 Pyramid was taken off the air, their lives were completely disrupted. Worst of all, years ago, their other sister came home one day to find their mother had inserted all three of their heads in the oven and asked for the gas to be turned on. The girl cried and begged her mother to stop, and, thankfully, she did, promising it would never happen again. And it didn't. However, she obviously never left the darkness I visit from time to time. There was nobody to pull her out of this extreme situation. No diagnosis. No services. No relief. While her family members described how depressed, mean, impatient, and alcoholic she was before she eventually died, my heart quietly broke for her. I am not so quick to judge anymore.
I have support for the one child with challenges I have. I'm grateful for a diagnosis, services, and my support group. I'm grateful for trashy movies, my exercise DVDs, cooking, beauty salons, friends, and cheap wine. I'm thankful that putting my head in the oven has never been an option (we have an electric one, anyway), but I admit that there are times when I wonder just how much more I can physically and mentally take. I'm pushed to my limit like never before.
At the end of the day, though, the fits stop. My little boy looks up at me and says, "Cuddle, Mama." I turn on his CD player and crawl into bed next to him for a few minutes. He looks into my eyes and giggles, which is contagious. He seems amazed and incredibly overjoyed that I am there with him, which makes me feel like the most amazing mother in the world, despite all of my profound shortcomings and that dark place waiting for me just around the corner.
Erik continues to toe walk to the extreme, although we have been unable to measure any increase in his height because he refuses to let us. With his growth spurt, his language has improved to the point where he can come to me and tell me what's going on in another room. That's new. Yesterday he told me the cat was scratching at the garage door. I told him he could let her in if he wanted to, and he disappeared. I waited a couple of minutes and then went to check on him. He actually accomplished this task (which surprised me, as he detests my cat). He is still generally unable to follow two-step instructions. He has also informed me his diaper is wet after a leak, which is promising, as I am hoping he will eventually submit to using the bathroom. It is refreshing being able to communicate this way. Having a two-way conversation is not only handy, it may actually save one of our lives at some point.
Amazingly, he continues to obsess about the day my car wouldn't start and is visibly anxious every time one of us turns a key in the ignition. He rages at Brian when he cannot watch You Tube videos of tractors, vacuum cleaners, ATVs, or washing machines. As soon as Brian steps across the threshold at the end of the day, Erik is on top of him and won't take no for an answer. He will continue to bombard Brian for hours with the same question and will throw a fit every time, as if he has never heard the word "no" before, after which he is placed in his room to rage without the benefit of witnesses. We do this over and over. And over. And over. And over. And over. Once in a while, he will change things up and ask if I am going to start the Jeep. I stifle a scream when I hear this question for the 50th time each and every day. There doesn't seem to be a solution in sight. Ignoring him or changing the subject doesn't seem to help much, although I usually distract him or ask him questions about something else to get us off the same tired topic. No, Erik, you can't watch tractor videos. Yes, Erik, we will start the Jeep at some point today. Would you like to play with trucks? This usually goes over like a lead balloon with Erik, and we begin the whole process over again.
Urgh.
Last night I watched the Discovery Health special on Kay and Flo, autistic savants. They have the amazing ability to tell you what day of the week it was for any date you provide. They are obsessed with Dick Clark and have met him twice. Just peering into their shared world was amazing and fascinating. On the flip side, however, the family members they live with are worn down and about to snap. Kay and Flo function on an elementary school level and are unable to live independently. They were teased so much that their mother kept them hidden from the world for years. The day Dick Clark's $100,000 Pyramid was taken off the air, their lives were completely disrupted. Worst of all, years ago, their other sister came home one day to find their mother had inserted all three of their heads in the oven and asked for the gas to be turned on. The girl cried and begged her mother to stop, and, thankfully, she did, promising it would never happen again. And it didn't. However, she obviously never left the darkness I visit from time to time. There was nobody to pull her out of this extreme situation. No diagnosis. No services. No relief. While her family members described how depressed, mean, impatient, and alcoholic she was before she eventually died, my heart quietly broke for her. I am not so quick to judge anymore.
I have support for the one child with challenges I have. I'm grateful for a diagnosis, services, and my support group. I'm grateful for trashy movies, my exercise DVDs, cooking, beauty salons, friends, and cheap wine. I'm thankful that putting my head in the oven has never been an option (we have an electric one, anyway), but I admit that there are times when I wonder just how much more I can physically and mentally take. I'm pushed to my limit like never before.
At the end of the day, though, the fits stop. My little boy looks up at me and says, "Cuddle, Mama." I turn on his CD player and crawl into bed next to him for a few minutes. He looks into my eyes and giggles, which is contagious. He seems amazed and incredibly overjoyed that I am there with him, which makes me feel like the most amazing mother in the world, despite all of my profound shortcomings and that dark place waiting for me just around the corner.
Labels: coping, dark place, Williams syndrome
9 Comments:
I never know what to say... just know that I love you girl and am always always here for Erik and you! Is there anything I can do for you??? Just call and tell me!!
BIG Hugs~
Dawnita
Reading your post, I got teary eyed. So often I feel like I'm in a dark place and I know people would be shocked at the things Bob and I have said before (like....you know, if we drove off this road, we could all go together). Life sometimes seems too unbearable and we wonder how in the world we're going to make it thru - and not have our family torn apart. Even though it is heartbreaking to read your post, Nancy, it once again helps me to realize I'm not alone. Although, in our home, I feel very very alone - I know there is always someone out there who just gets it.
Lot of hugs,
Tara
Whew! I feel like you have just summarized the past few weeks for us. I am worn down with ya. It's good to not be alone in this.
There are those bright moments to hold on to though and it's important to keep those in mind...your cuddle moment at night time...priceless.
Oh Nance! I am soooooo happy for you... that you have some amazing women in your life that "get it" and "know" and "understand" when you share topics like "Visiting Darkness"! Just know that I am always here for you and whatever I can do to help I am always ready!
Thinking of you lots today!!!
Dawnita~
I'm so glad that you can put how I feel into words because I am definately not good at it. Maybe I should cut and paste into my blog!:) LOL At the end of the day, remember to celebrate the small stuff, for that is truly what is important! Hugs from me and Brynlee,
Jan
The 'Dark Place'.....been there, visit often these days. I find myself saying "I just don't feel like doing this anymore" a lot these days.
I have to admit that this was our life until we got Caleb's anxiety under control. He does still have a tendency to ask the same question a bazillion times. Sigh...
The extreme radical behaviors are so much less intense now though. It sucks that our kids have to be plagued with this crazy anxiety. I have learned that it can be managed pretty successfully. I just wish I would have learned that much much much much sooner.
Hang in there Nancy.. In some strange way, it really does help to know there are others who are there or have been there and know how you feel. It doesn't feel so alone.
I am slowly seeing some of the obsession stuff and temper tantrums. Whew!! They are few and far between, but when they happen, watch out.
I am so with you in that place. I don't even notice that it is dark here anymore. It takes others noticing for me to see....I do have a gas oven....trust me it has crossed my mind but it never stays there for long. Who would take care of everyone else if I wasn't around?
I too wish that I could write like you do sometimes. Maybe if my husband read that others feel the same I wouldn't feel like such a failure.
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