Sissy cooled her jets yesterday after about a dozen attempts to exacerbate me. And trust me, she made valiant efforts. Fortunately, I was not exacerbate-able. *phew!* I called the IFI team just to give them a heads up. She's really pushing the limits today, not sure what's going on with that. Any suggestions? Can you talk to her about it on Wed. morning? because the IFI team is coming twice this week. Thank heavens? LOL My jury is hung on a verdict as to whether or not IFI is going to help us help Sissy. At this point, The Dad and I are taking the stance of keeping the appearance of wanting to participate because that stance covers our shiny hineys.
Last night, to help them cool off from our 90 degree heat made worse by this insane pine pollen, I let them run in the sprinkler. Sissy was better? Hesitant to have fun? It's so hard to put a name to her mood and behaviors. She is so dis-regulated, even with all the meds they have her on. I sat on a folding chair in the driveway, keeping a vigilant eye on their fun. Wonder Girl was tentatively hobbling about, the Physical Therapist having given her a green light to start walking again. But I wasn't going to take the chance of leaving Sissy alone with Wonder Girl where running through a sloshy, wet yard was the game. Plus, Aspie Boy is prone to stray into the street (and sometimes strip).
As I sat there, contemplating my life as a mother, watching these children, MY children, running around and getting soaked, I was filled with ennui. Wonder Girl is the only one that is able to have fun with reckless abandon. But even then, she keeps a very keen eye on Sissy. Just the fact that a 10 year old and a 9 year old have to be supervised in the yard speaks volumes to my responsibilities as their mother. I say to myself, "you're over protective, they'll be fine. stop being a helicopter parent" but none of those cliches are true in this case. No, I'm NOT being protective enough, no, they won't be fine. No, this isn't helicopter parenting, this is wise parenting of special needs children. And it sucks. This is a hard road for me. Other moms might be able to take this in stride, but this chica, not so much.
I imagined what it would be like if a peer of non-challenged children was sitting beside me, watching my children with me. She might say, "I don't understand. They're playing just fine. Sissy is fine. Look at them, they're enjoying themselves." And that woman would be right, but only for that ten minutes of time. A ten minute segment of parenting joy that happens about once every 10 days of sheer mayhem and is consequently filled with grief. Grief, because the happy moments are so few and far between, because I have to be vigilant to find them and then soak them up because I don't know when they'll happen again. Because so much anger and screaming and hatred has happened between the 10 minute good times that it's hard to just let go of that negative energy so I CAN fully embrace the happy times. Because as I sit there watching them splash and scream, I know that when the water is turned off and it's time for bed, Sissy will be back to rage about her PH, I'll spend 25 minutes therapeutically parenting her through her bedtime routines and be so exhausted from trying not to lose my cool and be a proper parent that when I go to tuck in WG and AB, I'm too exhausted to do more than peck them. Because I'll have completely taken them for granted... again. If my peer of non-challenged children said, "it's not so bad, they're doing great right now" I'd angrily turn to her and say, "try saying that to a cancer patient when she is in between vomiting sessions from the chemo"
I've watched the videos over and over, searching for some clue as to how I might be a more effective parent, what doorway might I find that gets me on a road toward helping Sissy heal, what behaviors is she doing that trigger me, what behaviors am I doing that trigger her and finally I turned them off. Aspie Boy walked into my bedroom, complaining about a headache and I turned to face him and my dejection was showing on my face. Dejection because I can't see a way out of Sissy's nonsense. "Mom. Why are you watching those movies?"
"Because I'm hoping I'll figure out if I'm doing something wrong that makes Sissy scream."
"ARE you doing something wrong mom?"
*trying not to cry* "No son, I really don't think so."
"So why does she do that mom?"
"I wish I knew son, I wish I knew. But I'll be taking the videos to my therapist tomorrow so she can help me figure it out, ok?"
"Do you want some tylenol?"
he's such an amazing boy. I'm the luckiest mom ever. Sure, he has his quirks, sure, he'll be in a group home or assisted living, working a blue collar job at just the right amount of hours so it doesn't stop his SSDI, sure, getting married and having more children is probably not a good plan for him since he'll just pass along his genetic disorder, but he's MY son. And I think he's precious.
I gave him his tylenol, thinking all of those thoughts and then a pang struck my heart. I really, REALLY wish I could find that same love in my heart for Sissy. I had it once. So very long ago. It is just a faded memory now, the hope that Sissy would be my daughter, that I'd get to be her mommy, that I'd raise her into a beautiful woman that loves her life and the people in it. I never had high aspirations for my children. I just hoped for love and joy, peace, patience and happiness. I don't know if that will be a reality for Sissy and I.
I know what Nancy Thomas says, that you have to find something to love about the RADish and then stick with it. Make your face say LOVE! everytime you look at the RADish. Find something, ANYTHING that makes your face light up. Fake it till you make it. She tells a story of one boy that was so difficult the only thing she could think of that made her think LOVE! when she looked at him was that he was her tallest child. So she thought he's my tallest child! with love, everytime she looked at him, held him, helped him, nurtured him, parented him. I have to find that nugget for Sissy. Right now, I don't know if I want to, I don't know if I have it in me to dig any deeper.
What a girl wants? What this girl wants is to find happiness and love, peace, patience and joy in my life as Just me, as a wife, as a mother and as a woman regardless of RADs. Right now, I don't know if that's possible.
Right now, what this girl wants is to take a very long vacation with just The Dad so he and I can do what our peers of non challenged children take for granted every day: Live. Laugh. Love.
if you've never lived where the pines are, you don't know what I'm talking about but good God almighty, it's been the worst I've ever seen it and this is my 14th spring in the state. the air quality has been so poor and Aspie Boy, Sissy and my allergies have been so compromised that we are taking daily doses of local honey, allergy meds, decongestants and STAYING INDOORS!