Erik Quinn: The Heart of a Family: System Failure Imminent

Thursday, April 03, 2008

System Failure Imminent

I have been out of sorts over the last few days, for some reason. I suppose I am still feeling overwhelmed with details concerning the WS convention, my excitement about the upcoming WS run, and witnessing my friend process the fact he has a serious illness that will likely eventually take his life in the too near future. I have been completely going through the motions here at home and can see I am not letting myself feel much of anything at all. Even sitting here tapping at my keyboard doesn't seem to be shaking anything loose. I feel numb and weirdly calm. Something doesn't feel quite right.

I was invited to attend a new support group for mothers recently. I missed the first one a couple months ago because I developed a migraine just before I was supposed to leave the house and ended up twisting in pain under a blanket on the couch. I haven't had a migraine since. Tonight the meeting is being held in the hospital cafeteria. The bad news: No wine. The good news: Sundae bar. I'm not excited about seeing how this will affect me, especially in a clinical setting that reminds me of my occupation and the hellish days I spent there with a baby who cried nonstop. A despondent woman recently hurled herself over a railing there, tumbled through the air, and landed on the lobby floor not far from a glossy grand piano in front of a handful of horrified onlookers. She passed away a short time later. It's comforting to know that I'm not the only one who finds the hospital depressing. Erik's therapist keeps mentioning this group to me and actually sort of pushing it, but I can't figure out if it is really a good idea or not. I have "normal" and "special" balanced quite nicely in my life, and I'm a little wary about adding too much "special" stuff to the mix (that probably makes no sense at all). I do adore one of the women who originally invited me. Her daughter was in Erik's early intervention class and has Phelan-McDermid syndrome. I'm still unable to talk about even small details about Erik comfortably in a social setting, and I am hoping these women can teach me how to do that. I have learned that many people ask me which preschool attends, and telling them the name reveals the fact that he is in special education. Not telling them the name (Oh, he's in a little community preschool) either generates more interest in the name or makes me sound as if I am hiding something. Argh. Will this ever feel natural to me? I know what and how much/little to reveal depending on the listener, I suppose, but my technique simply sucks.

My parents took Erik to the pool yesterday afternoon for therapy. The temperature of the water was too high, so they asked them to wait for 10 minutes. My mother took Erik on a sprint around the block while they cooled the pool down. Therapy apparently went well, and Ella, one of Erik's friends from hippotherapy, was there as well. She has Rett syndrome and is largely unable to speak. Her body is very stiff, and she rocks back and forth on her legs to ambulate. She does this quite well. Erik usually marches right up to Ella when we are at the stables, unafraid and unburdened by any knowledge of her disability, and stares right up into her eyes. She usually looks down at him, blinks her eyes, and rocks back and forth as he smiles and says, "Hi, Ella!" Lately when he has done this, the corner of her mouth turns up as if she is trying to smile at him. It always makes my day, as she played hard to get at first and seemed largely unimpressed with Erik's efforts at charming her. Yesterday Erik easily recognized her voice from behind a door and was excited she was there. My mother said that she was in the pool when they left, and she actually might have attempted a wave at Erik. Hearing this caused my emotions to seep out a bit before they went into hibernation once again.

Erik kicked me, shoved me in the throat, pinched me, slapped me, and growled at me yesterday when he got home and we were alone again. We have really worked to teach him that these things are not acceptable, and, for the most part, he is improving. However, when he is exhausted, it just doesn't seem like he has any filter on his emotions whatsoever. He can't seem to stop himself and even lists the consequences before he acts. I'm not sure how in the world we will deal with this when we travel to California. It's hard to watch, and I have no better solution than telling him he needs to calm down and carrying him to his room until he does so. I am consistent but feel worn down after being hated like this and then having to repeat this process nine times in a row. It sometimes seems we don't get anywhere for hours. There are days during which I feel like I am trying to get somewhere quickly in very deep sand. It is, however, getting a little better. I just hope it does before he learns to destroy my things, which he is at least thinking about doing these days, or gets strong enough to really injure me. I was happy to see a class on behavior problems offered at the convention.

On days like these (hell, weeks like these), I remember those words Anne McGarrah's mother wrote at the bottom of the card she sent to me after her daughter passed away from complications of WS. They were written in red capital letters and have given me strength day after day.

BE STRONG.

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5 Comments:

Blogger Julie said...

Oh I am so jealous. I wish there was some sort of support group in my area. The only time Noah is aggressive is when he is tired. Usually I am the recipient, but the other day when his OT was here he was exhausted and had enough therapy. He hauld off and CRACK slapped her right across the face. I could have died.

10:14 AM  
Blogger Lisa R said...

Sounds like a good pool day, and those are good words you are strong. Bite that boy back that was all it took fir Emma to stop haha

10:37 AM  
Blogger Tara said...

Nancy,
I feel your pain on the behavior issues. We struggle with them so much with Payton. We are consistent and yet it still seems she is unable to control herself. I see it happeneing when she's been overstimulated, hungry, tired, etc. ACtually - I wish I could predict it better. It makes life really difficult - and sometimes frightening. Even though they are small, they are very strong.

I'm so sorry to hear about your friend. It seems you have a lot on your plate you are dealing with right now. (I do wish my community had a support group). Hang in there.

2:23 PM  
Blogger LZ Blogger said...

Nancy ~ Good words for us ALL to remember (especially) when times are the toughest! ~ jb///

3:20 PM  
Blogger Katie said...

Good luck with the support group - Sometimes i feel like i am giving in to it all by going to that sort of thing, but the "typical" ones are worse.. too much explaining to be done and nobody understands. I guess the sad fact is that no matter how we wish we could hide it life does revolve around the "special child" now, and these groups are purely a bunch of exaughsted people attempting to deal with the hand that has been thrown at them - and i do find any genuine understanding, brings relief, sadness too, but overall relief and i feel better for it.
xxoo Take care

7:55 PM  

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