Wow - wow - wow!!! I can hardly believe we're living a completely different reality. Amazed, grateful, humbled, stunned . . .
Lily is a different kid, so much more like her exhuberant self, but so much more mature. She's sweet again. Kind to her brother, even when he resists, is unkind to her. Fun and loving with me. Funny, beautiful, smart, aware. It's breathtaking.
She's getting great grades and getting along with her peers.
She's proud of herself.
And I'm so proud of her. So humbled by her courage and honesty. She inspires me.
Our world is changing so fast now. We can play games together as a family. We watch tv or movies together. We laugh and play. We get through our conflicts with much less trauma.
Lily is making tremendous efforts with her brother. And he's holding on to a sense of bitterness over how hard things were. In family therapy, we talked about how he lost her, his closest sibling, when things got bad for her. She targeted him for so much of her frustration. And he loves her. She's getting it - seeing him as the loving kid he really is. And she's loving him back again.
But part two of all that is that he not only lost his sister in her illness, he lost his mother. I was here, but not. Lily needed so much, 24 hours a day. I was terrified. I attended to my youngest son, but in such a limited way. I knew it wasn't fair, but could only pray that he'd be OK until things somehow changed. He behaved perfectly. Got straight As at school. Had perfect attendance, kept his room spotless.
And now he doesn't have to. He's struggling more in school, spends too much time at the computer. He's behind on his assignments, his room needs a good cleaning, and his behavior can be difficult. Yet he still can be so loving, cuddly, sweet. It's quite a combination.
The other day he wanted to stay home from school. We had a tough time, I made him go, even though he cried and yelled. I told him I understood it was hard to face his teachers with missing work, but it was important to do it, that I knew he'd be fine. So he went, and he managed, and next time it won't be quite so hard.
And after I tucked him in that night - (I know - thirteen, but it gives us time together!) I started to walk away, and he stopped me. He said, "Mom, thank you for making me go to school today."
So heartbreaking. He's incredible, And he was thanking me for seeing him, for being there, being a mom, for doing what he's been needing all along.
I knew he needed me. If I could go back and figure out how to keep Lily safe and be a better mom to my son, oh - I so would! But I didn't know how to then. I still don't know what I could have done differently. But I'm so profoundly grateful I can be there now. That it's not too late. We're so incredibly fortunate that he's resilient. That he's forgiving and has a really good, kind heart.
Which brings me full circle. Life is amazing right now. I dind't know if we'd ever be this happy again. Lily is now off not only the risperidone, but the topomax as well. She's not tapping when she hears "ck" words. She's easing up on her diet restrictions. She tolerates being around others better. She even sat with us when we all had ribs on Mother's Day! These are behaviors that caused considerable distress before. Again - wow!
So Lily is recovering beautifully, from being misdiagnosed and over medicated, from her own problematic thoughts and fears, from being a young woman in a society that beats young women down.
Her brother is teetering on the edge of trust and hope, and I know we can nudge him over. He is loved - by me, by Lily, by anyone who knows him. I'm getting a do over, and I'm not going to let him fall through the cracks.
I'm graduating from college next week. Finally. I got to finish - and I'm so grateful, truly grateful, for the chance to complete something 30 plus years in the making. No more homework, no more disappointment that I didn't finish something so fundamental to who I am. I'd love to go to grad school, but what I really want is to just be a mom for awhile. To focus on the kids, and juggle work and home, without the trauma and drama of the last several years.
So happy. We are just so happy.
Friday, May 18, 2012
Thursday, March 8, 2012
Progress Report
It's been a very busy couple of months since I last posted. Lily settled in to her new semester amazingly well. Really. I expected difficulty. Transition is so hard for anyone, and especially Lily. She has a new schedule, new classes, new teachers, new classmates. Just when she finally was functioning well in the old classes.
And she handled it really well. I just can't say that enough. She's become a champ. And the last several weeks have been so interesting! Lily is now completely off the risperidone. She has been for a couple of weeks. We brought her down off of the anti-psychotic under the direction of her psychiatrist.
The truth is that I want this for her, but I've been scared that she would return to a manic, hallucinating, dysfunctional state. She's had a few hallucinations, but otherwise she's still functioning beautifully. Which is confusing for me, but so reassuring. When I feel like freaking out over an episode, Lily's therapist reminds me that Lily is not the same person she was a year ago. She's not sitting on the sofa, scared or doped up, wanting me right next to her, depressed and withdrawn.
What she is, is funny, witty, engaged in the world around her, appropriately angry, apologetic, sincere, and sharing her feelings with us. With her therapist, with me, with her brother. I'm humbled by her strength and desire to be authentic, to tell it like it is, while recognizing a need to be aware of others' feelings, of how she affects others.
She is also acting out occasionally in a developmentally appropriate way. She's fourteen. She sometimes is that kid who knows everything, runs out of patience and picks on her brother. So wonderfully normal.
So, why is she experiencing hallucinations? She's not sleeping enough. Without the sedative effect of the risperidone, she has a harder time going to sleep, and sleeps much less than she was. Sleep deprivation can cause hallucinations. When this all began 2 years ago, Lily was having trouble sleeping. Sometimes I gave her Benadryl to help her get to sleep, but her psychiatrist recently told me there can be issues with cognitive impairment/hallucinations there also. He advocates a more natural approach for sleep regulation. That makes sense to me.
So we're staying the course. Having written that, none of us got any sleep last night. Lily was a bit scared, and asked her brother to keep her company for awhile. They were both tired, and both ended up scared. They both wanted to climb into my bed, and that just wasn't going to work. A queen size bed isn't spacious enough for a fourteen year old girl, a thirteen year old boy and this cranky old mom. So we all camped out in the living room for a bit and struggled through the night. But - both kids went off to school today.
And me? In spite of my gratitude and pleasure about Lily's progress, I'm stressed and overwhelmed by my responsibilities. I'm trying to keep Lily on track, give her brother the attention he finally is demanding, complete my final semester so I can graduate with my BA, and deal with my own mother issues. I'm not taking care of myself, which I think is pretty common in the world of parents of special needs kids. But it's kind of eroding my confidence. Being tired, achy and stressed out isn't healthy. It's not who I want to be.
I want to be poised. Confident. Calm. I want to be fit enough to move with ease. My body is slowing down and any pretense of grace has long ago left the building. I know what I need. Regular walks outdoors. Good music. Less tv. More healthy meals, less junk food.
But I know myself, I won't be able to do all of this right now. An occasional walk would be the best start. A walk resets my stress level. I breath better, I look at the trees, water, scenery. I listen to birdsong or crashing waves. It gives me a mental break. If I can do that, and work on meal choices one at a time, I can move forward. Not perfect, just better.
Then I can be more the mom I want to be. And enjoy life, enjoy my kids. They're pretty damn amzing.
And she handled it really well. I just can't say that enough. She's become a champ. And the last several weeks have been so interesting! Lily is now completely off the risperidone. She has been for a couple of weeks. We brought her down off of the anti-psychotic under the direction of her psychiatrist.
The truth is that I want this for her, but I've been scared that she would return to a manic, hallucinating, dysfunctional state. She's had a few hallucinations, but otherwise she's still functioning beautifully. Which is confusing for me, but so reassuring. When I feel like freaking out over an episode, Lily's therapist reminds me that Lily is not the same person she was a year ago. She's not sitting on the sofa, scared or doped up, wanting me right next to her, depressed and withdrawn.
What she is, is funny, witty, engaged in the world around her, appropriately angry, apologetic, sincere, and sharing her feelings with us. With her therapist, with me, with her brother. I'm humbled by her strength and desire to be authentic, to tell it like it is, while recognizing a need to be aware of others' feelings, of how she affects others.
She is also acting out occasionally in a developmentally appropriate way. She's fourteen. She sometimes is that kid who knows everything, runs out of patience and picks on her brother. So wonderfully normal.
So, why is she experiencing hallucinations? She's not sleeping enough. Without the sedative effect of the risperidone, she has a harder time going to sleep, and sleeps much less than she was. Sleep deprivation can cause hallucinations. When this all began 2 years ago, Lily was having trouble sleeping. Sometimes I gave her Benadryl to help her get to sleep, but her psychiatrist recently told me there can be issues with cognitive impairment/hallucinations there also. He advocates a more natural approach for sleep regulation. That makes sense to me.
So we're staying the course. Having written that, none of us got any sleep last night. Lily was a bit scared, and asked her brother to keep her company for awhile. They were both tired, and both ended up scared. They both wanted to climb into my bed, and that just wasn't going to work. A queen size bed isn't spacious enough for a fourteen year old girl, a thirteen year old boy and this cranky old mom. So we all camped out in the living room for a bit and struggled through the night. But - both kids went off to school today.
And me? In spite of my gratitude and pleasure about Lily's progress, I'm stressed and overwhelmed by my responsibilities. I'm trying to keep Lily on track, give her brother the attention he finally is demanding, complete my final semester so I can graduate with my BA, and deal with my own mother issues. I'm not taking care of myself, which I think is pretty common in the world of parents of special needs kids. But it's kind of eroding my confidence. Being tired, achy and stressed out isn't healthy. It's not who I want to be.
I want to be poised. Confident. Calm. I want to be fit enough to move with ease. My body is slowing down and any pretense of grace has long ago left the building. I know what I need. Regular walks outdoors. Good music. Less tv. More healthy meals, less junk food.
But I know myself, I won't be able to do all of this right now. An occasional walk would be the best start. A walk resets my stress level. I breath better, I look at the trees, water, scenery. I listen to birdsong or crashing waves. It gives me a mental break. If I can do that, and work on meal choices one at a time, I can move forward. Not perfect, just better.
Then I can be more the mom I want to be. And enjoy life, enjoy my kids. They're pretty damn amzing.
Monday, January 9, 2012
And Downs . . .
Lily had a rough time last week, after a nice Christmas. I'm still fighting the desire for an instant and complete return to my idealized version of family life, even knowing how ludicrous that is! But writing it out helps me maintain some perspective, so here goes.
We traveled to a distant town to spend time with my older daughter and her family. One of the motivations was to watch my grandson while she returned to work for the first week, a difficult thing to manage with a new baby. This meant less direct attention for Lily. It also meant she'd need to be somewhat independent with grabbing meals and meeting her individual needs. She's been more independent in the past, so I know she's capable, but it didn't go well last week. She was angry and frustrated, and also clearly jealous of the adorable 10 week old baby.
We also had titrated down a bit on her risperidone. So when Lily reported a couple of hallucinations, and I witnessed her struggle to remain calm and co-operative, I wasn't sure if it was from the med change, the frustrations of being away from home, or a combination of both. We did get through the week, and a miserable ride home, but it wasn't pretty.
I also need to keep in mind that she's fourteen. She criticizes most things I do, or represent, and that's part and parcel of the difficult push for independence from your parent. But I don't like it. Especially when she criticizes something she's asked me to do for her, a favor that meets with disdain and/or snarkiness. Because, really, I'd much rather be doing my own thing than help someone who's rude to me. I could be reading, walking, writing, even cleaning house would be preferable.
So once again, I'm trying to be mindful about balancing my response to Lily. It's normal to feel frustration with a rude teenager, but this kid also needs a lot of reassurance. I need to let her know when she crosses a boundary, so she'll learn from the experience, but I also need to be certain she knows I believe she's lovable, talented, capable, worthy. Because she is.
In the end, we settled in at home and Lily returned to school this morning without any negative drama. We get a gold star for that, as it is a group effort. Yay us!
We traveled to a distant town to spend time with my older daughter and her family. One of the motivations was to watch my grandson while she returned to work for the first week, a difficult thing to manage with a new baby. This meant less direct attention for Lily. It also meant she'd need to be somewhat independent with grabbing meals and meeting her individual needs. She's been more independent in the past, so I know she's capable, but it didn't go well last week. She was angry and frustrated, and also clearly jealous of the adorable 10 week old baby.
We also had titrated down a bit on her risperidone. So when Lily reported a couple of hallucinations, and I witnessed her struggle to remain calm and co-operative, I wasn't sure if it was from the med change, the frustrations of being away from home, or a combination of both. We did get through the week, and a miserable ride home, but it wasn't pretty.
I also need to keep in mind that she's fourteen. She criticizes most things I do, or represent, and that's part and parcel of the difficult push for independence from your parent. But I don't like it. Especially when she criticizes something she's asked me to do for her, a favor that meets with disdain and/or snarkiness. Because, really, I'd much rather be doing my own thing than help someone who's rude to me. I could be reading, walking, writing, even cleaning house would be preferable.
So once again, I'm trying to be mindful about balancing my response to Lily. It's normal to feel frustration with a rude teenager, but this kid also needs a lot of reassurance. I need to let her know when she crosses a boundary, so she'll learn from the experience, but I also need to be certain she knows I believe she's lovable, talented, capable, worthy. Because she is.
In the end, we settled in at home and Lily returned to school this morning without any negative drama. We get a gold star for that, as it is a group effort. Yay us!
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