Friday, May 18, 2012

Happy Tears

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.

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.

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!

Monday, December 26, 2011

Reasons to be Grateful

Our family had a lovely, peaceful Christmas, and I'm thinking about this past year and how much things have changed.

Some of that is small.  Today I took out recycling and didn't think twice about leaving Lily in the house without me.  Last year she would have wanted to be with me, meaning I'd wait until she had her shoes on before venturing out the door and to the bin.  Even now, Lily is upstairs in her room, enjoying privacy, not scared, not yelling at her brother to be quiet (he's talking on-line to his school buddies), not screaming at me to be up there sitting in her room.  It's a different life in so many ways.

The fall brought milestones that felt miraculous.  Lily attended a dance party, and when I went in to pick her up, she was laughing, dancing, and holding hands with other kids.  I can't even begin to express how meaningful that is. 

Laughing.  Such a small act that says everything about her state of mind.  She spent last year either sedated to a stupor, or depressed beyond words.  I missed her laughter, the sweet, gentle and silly sound of genuine happiness.

Dancing.  To modern music.  Uninhibited.  Joyful.  In a room full of people.  Normal - and so very far from the emotions how she expressed  last year.  My jaw dropped.

Holding hands.  The child who wouldn't accept a hug, a light caress, a pat on the arm.  I knew she needed to be hugged and held.  I've needed to hug and hold her. And this, happily, is becoming more common.  Lily wants me to sit close to her, not because she's scared, but because she's willing to allow herself to be loved.  That's how it feels.  She gets silly and wants to duck walk, or poke me playfully when we're out. 

And there's more.  She's willing to be silly, look funny, make outrageous sounds together when we're out shopping.  She's having fun.  And so am I.

Which doesn't preclude conflict or adolescent drama, but gives me some much needed perspective.  When Lily is grouchy, it's balanced a bit by good humor at another time.

And she still will have times when she's overstimulated and needs space, or a quiet break.  But she's easier to work with when this happens.  She calms down faster and is able to move on, and sometimes to rejoin the group.

Socially we're still navigating and exploring how to connect with genuine friends.  And how to deal with the disappointments that come with being left out of other friends' get-togethers.  Lily doesn't understand why girls will talk about going shopping together and then fail to call her and let her know when and where.   She's still learning how to be proactive socially, how to do the inviting and pull something together.  It's not so easy for her.  She gets her feelings hurt, and she feels it deeply.

But I know for sure, that this is one more hurdle we'll overcome.  Lily is incredibly resilient.  She has an iron will, and I believe in her.  I  believe she can be happy.  That she has tremendous things to offer the world.  That she will ultimately use her experiences towards a good end.  And I'll help her all along the way.

Friday, December 9, 2011

Cool Kids, Geeks and Blessings

Life has recently kept me from my keyboard, and I've missed writing, but life has also been so very good recently!  Lily is functioning, beautifully, mostly normally, and that allows our family to function normally.  I am so damn grateful.  Truly, gushingly, tears of joyfully, grateful.

Lily is managing school.  Since our last set-to about attending (see Drama Drama Drama) she has been ready to go each morning with little or no drama.  She's not always happy about it, but she's doing it.  And . . . she's connecting socially with other students!  Not just the group of girls she thinks she wants to be friends with, but other kids in her classes who, it turns out, are actually nice.

If you haven't yet been through this kind of social torture, adolescent girls band together and either let you know you're really cool, or let you know they're only letting you hang out with them as a favor to you.  Not in so many words, but by cell phone manipulation.  You call and they answer, you're in.  You call and get their voicemail, don't expect a call back in this decade.

Lily thinks she wants to be in with these mean girls.  And it ticks me off that they're callous.  But meanwhile, Lily is becoming closer to kids you wouldn't find in the cool kid lineup.  I love it.  These are not the kids you'll find partying on the beach Saturday night.  They're kids who have quirks not so different from Lily, or at least quite different from the average popular kid.  So, they're more accepting of Lily if she says something a bit off, if she misses the social cues that fuel the in-crowd.

So being a mean mom has allowed me to give Lily the gift of normalcy.  She can be aggravated, bugged, repulsed, or just embarrassed by my mere presence.  She can be at school where a shared experience makes allies of unlikely souls, banded together by totally having to put up with their uncool parents and the oppressive regime of high school.  They are a motley group of survivors in modern society.

Thank you Spirit, Lord, Universe, for the blessing of a kid who is not cool.  Viva la difference!

Wednesday, November 2, 2011

Drama Drama Drama

Or should I say Teens, Teens, Teens . . .

Lily is accustomed to getting her own way in almost everything.  That dynamic has been in flux since starting with the new therapist during the summer, and of course Lily is pushing limits to hold onto control.  I don't blame her, but it sure makes life interesting in some challenging ways.

She's in school (YAY!!!) and achieving good grades - fantastic!  She's so smart, so capable.  But it is hard for her.  Socially, she really struggles, so being around hundreds of other teenagers is uncomfortable.  We're just beginning to work on socialization issues, and I believe we'll make good progress.

But she's becoming more resistant to attending school.  She's getting up in the morning and complaining about being confused.  I don't think I really buy that anymore.  She knows me well and plays on my sympathy.  I love her, I want things to be comfortable for her.  But that's not the best thing for her.  Life can be hard, and she needs to be able to cope.  I can't, don't want to, always pave the way for her.  She'll never become more confident if I'm stepping in so she doesn't have to handle things.

So I'm getting better at holding a hard line.  Last week she missed a day of school after a morning full of drama.  Crying, refusal, pleading that she was incapable of going to school.  I was rushed, trying to get her brother to school on time, not wanting to facilitate Lily's behavior.  I ended up leaving her home alone, her choice, while I drove her brother to school.  I told her to get her things ready and I'd take her to school after I dropped her brother off.

She phoned her grandma to complain that I left her home alone and didn't care that she didn't feel good.  She wanted Grandma to rescue her.  To my mom's credit, she talked with Lily, reminded her that she's a strong, capable girl and that she'd be OK.  She also told Lily she could stay with her while I attended my classes.  I wanted to get to my classes, and I gave in and took Lily to my mom's.

Today was different.  I got Lily's things together, insisted she get her shoes on and insisted she get into the car.  She cried and yelled all the way across town.  I kept telling her she'd manage, that she could get through school even if she didn't feel well.  I told her she didn't have to be perfect, she just had to be present.  She yelled some more.

We dropped my son off first and drove on to the high school.  Lily spent her time trying to provoke me.  Tapping on my face, blowing snot indiscriminately, kicking the dash.

Worst mommy moment?  When I told her if she didn't leave my face alone I was going to smack her.  I wouldn't, but I can't say I didn't want to.  I've already called her therapist to ask for better ways to handle this one.

Best mommy moment?  When I told Lily that even though it had been a fucking hard year, I was still her mom and would tell her what she needed to do, where she needed to be, that she would attend school.  Yeah.  I said that.

I parked across the street from the school and got out to walk Lily in.  I pulled out her backpack and waited for her to climb out.  Yes, I was that angry mom standing on the sidewalk shooting her dear daughter mean looks while angrily exhorting her to get out of the car and get into school.  When I finally threatened to take away her computer privileges for a week she got out of the car.  Then she wiped snot on me and I took computer privileges away for a week anyway.

Lily still wasn't ready to go to class, so we went right in to see the vice principal and Lily's resource teacher.  Can I just say that this is an amazing team?  Amazing.  They were calm, respectful, and firm.  They backed me up and efficiently confirmed that yes, Lily needed to be in school if she had no fever and wasn't throwing up.  I clarified that spitting on the floor didn't count as vomit.  Was that petty?

Lily was sent off to class with a tardy pass, and I left, tired but victorious.  Not elated, not celebrating, but having won an important battle for Lily.

She will attend school.

Tuesday, October 11, 2011

Family Functionality

I'm out of sorts this week, and it's my own fault.  Lily had a rough start to her week last Monday (Fun and Games with Law Enforcement) but we had a good session with her therapist on Tuesday and moved into a more positive mental space.

So what's the problem?  I was called out of town mid week, and planned to take Lily and her brother with me. My mom offered to take care of the kids so they could stay in school while I was away.  I had misgivings and talked with mom about her ability to handle things, but she reassured me she was comfortable with it.  So, I accepted her offer.

And it was awful.  Lily is worlds better than even a couple of months ago, but she has issues that will take time to address.  Mom exploded on Lily over an emotional incident.  Lily phoned me, and I talked through the event with her.  I calmed her down and suggested she approach mom with an apology and an offer to take care of kitchen clean up.  Before Lily could get to the apology, mom started yelling again, effectively shutting down Lily's efforts.

Mom wasn't able to regulate her emotions, even after she and I spoke on the phone.  Her tirade continued through the next day.  Lily was upset, but maintained her composure with lots of phone time with me, and lots of support from her little brother.  My older son was able to step in and care for Lily and her brother until my return a couple of days later.

So I have some mixed feelings.  On the up side, Lily did an amazing job of holding it together in a highly stressful situation.  I'm also really pleased that Lily and her brother bonded through this, supporting each other.  I'm so proud of both of them.

Then there's my disappointment over my mom.  When she's good, she's very, very good.  When she's bad, she horrid.  I was worried that she might not handle everything the way I'd like, but I didn't think she'd fly off the handle in such a spectacular way.  I need to talk to her about it, but things are especially hectic and it'll have to wait.

So I made a mistake when I accepted mom's offer.  We have enough history that I should have known better.  And sure, it brings up plenty of stuff from my childhood.  When Lily called and told me what happened, I knew just what mom sounded like.  That's not something I should expose my kids to.  But they love her, and there are times they can enjoy each other's company.

Am I teaching them lessons about acceptance, about our ability to handle faults and adversity?  Or am I teaching them to accept being treated unacceptably?  Will it make a difference if I ask mom to apologize?

The kids are moving on, but what are they taking from this?  Am I making too much of it?  I have no objectivity.  I wish I knew how a healthy family would handle this, but I don't think a healthy family would encounter this situation.  Time to get some professional advice.