Update

Wow, so I just re-read my last post which was in May.  I think I was a little pissed off:)

All joking aside, it was not an easy situation. Things felt very dicey and we were not really sure where to go and what to do.  It was a very scary situation and we tried to handle it as best as we could.

The good news is that things seem to have improved tremendously.  Emma visited a therapist for a bit and it really seemed to help. She still won't tell us what the stressor was that first started her down that road but she seems to have stopped doing it and, best of all, will talk to us know when something bothers her.  I think the fact that she is opening up about somethings is a positive sign.

I still watch her closely and I worry that it will happen again or that some new behaviour will pop up.  So every time she does something new i tend to question it and wonder what self-destructive aspect their is to it but... maybe one day I'll get over it.

Tomorrow is the first day of school so we'll see how she deals with the stress in the first couple of weeks back.  I think we'll have to keep a close eye but try to find a subtle way of doing it or she'll just get pissed off. At least, she somewhat understands that we've earned the right to question.

That's it for now:)

I am pissed off

The last couple of weeks have left me wondering about alot of things including my competencies as a parent.  Just how good a parent are you when both your kids are damaged?  Ok - so Ronnie is not my fault but reality is she is not 'neuro-typical'.  As for Emma, the rational part of my brain says that this behaviour is something she has chosen and that it is not about me but rather herself.  But the emotional part of my brain says 'that's all very nice, but you must have screwed up somewhere for her to think this is normal'. 

I am so angry at her for putting us throught this.  How dare she behave this way and be so selfish as to think that this would not affect us in any way.  Who does she think she is?  She thinks she is so unloved, unimportant, insignificant; that she always gets the short end of the stick because she's 'normal' and her sister is handicaped?  Grow the fuck up!!! Does she have any idea of the sacrifices we have made for her? Does her sister get to take dance classes? Does her sister get to go to movies and buy clothes and hang out with friends? Does her sister get to take karate classes? Does her sister get to hold us hostage to her fucked-up emotions and whims? Does her sister make me uncomfortable in my own home? NO to any of these.

We have bent over backwards to try to make things as normal as possible for kiddo and that is still not good enough. In fact, we've probably neglected some of Ronnie's needs (i.e. fun) to placate her sister and ensure that she is not forced into a public situation she doesn't want to have. And this is the thanks we get?  She cuts herself and then has the fucking balls to tell me it's my fault and to deny total responsibility for it???

I'm at a loss and have no idea how to deal with this anymore.

Up and down and around

So it's been a couple of weeks and kiddo has met with the social worker twice so I thought I'd give a bit of an update. 

I spoke to the social worker last week and she seems to think that things are going well; that kiddo is doing the work she is asking her to do and that she's responsive.  She's not just sitting there like a lump.  At the end of the meeting las week, she asked kiddo if she wanted to go back and kiddo said yes so I think that is positive.  Even kiddo is starting to make little jokes about it.

On the downside, we've had a couple of outbursts relating to "I'm a horrible person, I'm a failure, I'm never going to amount to anything...".  In fact, one of the outburst was "I thought I was done with this and didn't care anymore - why am I caring?".  We try to handle these as calmy as possible and give her positive feedback, like "you are not going to be an expert ukelele player in one week, it's unrealistic to put that burden on yourself".  I'm not sure that our positive images are working but we are trying.

We had another outburst on Sunday and again we tried to turn it 'realistic'.  I'm realizing that positive is not the right word; we are really trying to help her see that she is placing unrealistic burdens and expectation on herself and becoming disappointed because she can't reach her goals. It's not her goals that are unrealistic, its her expectations surrounding her goals.  Again, you cannot expect to be an expert ukelele player in one week. 

But she is a fantastic actress; we thought the situation was diffused but she went ahead and cut herself that night.  I know because I found the evidence in her pjs and in her diary.  I've refused so far to read it but stumbled across it last week and she's marked when she has cut.  Sort of opened it yesterday morning and say the notation 'and now I'm going to go cut'... Didn't make me feel good let me tell you.

Anyway, we spoke to the social worker about how to handle and her first reaction was 'CRAP'.  We were to call her out on it (which we did) and see if she wanted to talk about it (she didn't).  In fact, kiddo completely shut down and refused to talk about it. In her opinion we were humilating her by talking about it and that she was never going to say the word, blah, blah, blah.  I have to admit that I'm a little pissed that she's trying to blame us for this.  I know we screwed up but I didn't put the razor blades in her hand - she made that decision on her own and she will need to deal with the consequences of that action.

Not everything is negative

Just so you don't think everything is negative, kiddo and I went to Titanic in 3D on the weekend and we have fun.  Okay, we were sitting in a dark theatre so not really communicating, but I got to see her cry (true) and express some emotions AND we end up with an experience we can share 'cause we'll talk it to death, which is pretty positive.

I've made an appointment for her next week with the social worker so we get through her birthday week without having to dump this on her.  Now, I just have to convince her to invite her friends over on Friday and that she is important enough to do this; that she's not imposing on her friends by inviting them over and that she is allowed to have them over and recognize her birthday and that she's allowed to have a good time!!

Oye.

Kiddo meets The Doctor (not really)

So we met with the social worker on Monday with Emma.  I have to give the kid props; despite being incredibly uncomfortable she spoke and answered questions; she didn't prevaricate or try to pretend she didn't understand the questions, she didn't grump and growl (which she very well could have done) and from what I could tell was pretty honest.  There were a couple of times that I or Brian had to step in, gently, and add some information or ask a question but overall I think it went way better than I anticipated - and let's understand that I had no idea how this was going to go.

We and the social worker really tried to focus on getting her to see how some of her thought patterns need to be readjusted a little bit.  We also thanked her very much for having the strenght and courage to come with us and not just be crabby.

The other thing we did which has certainly not happened in a very long time if ever, was that after the session we went out for dinner just the three of us.  We made a distinct effort to not talk about the session and just talked about other stuff.  Until the end of the meal.  At that point I just asked her "do you understand why Dad & I went to speak with her?" and she said yes; then I asked "do you understand why we think it was important for you to meet with her?" and again she said yes; and the clincher "do you understand that we think its important for you to continue talking with her?" and again she said yes.  I know that she may feel coerced but I don't really care; I just want her to realize she doesn't have to be this unhappy.

I guess that's it for now.  Have called the social worker and am waiting for her to call me back for another appoitment for Emma.  Oh, and I think we need to do the dinner thing more often.  It was very nice.

Every one is important

Today was not a good day for me.  Well, that's not exactly true.  Most of the day has been pretty crappy but since about 4pm it's been okay.  Yesterday, my daughter was going to meet up with some friends to celebrate a birthday and as she was getting dressed, she came out and modeled this really cute top she bought a couple of weeks ago; but the top was sleeveless and I noticed some marks on her shoulder.  What is that? I asked.  She just kind of looked at me and tried to brush it off.

I feel like we are playing Where's Waldo.  Is there is any part of her body that is not scarred up?  So since yesterday I've been wallowing (yes, wallowing) in despair.  As much as I want to be understanding and supportive, I'm having a hard time - I'm starting to get angry.  With her; with us; with everything.  Why did she chose to do this to herself and place this burden on us?  It's not like we don't have enough on our plate...

Today it continued because I was in a crabby mood.  I'm tired of hearing her put herself down and tell us that we don't have to worry about it.  That she's fine.  That she's not doing it anymore.  That it's okay that she thinks she's fat, ugly, stupid and whatever else she thinks.  I'm so tired of it.

We ended up having an argument about it.  Told her that she did not have the right to tell us that we shouldn't worry - that she is just as important as her sister and that we were going to care whether she liked it or not.

Believe it or not that sort of ended it...for today.

We dropped the bomb

So after wondering when the best time would be to drop the bomb on the kiddo regarding the social worker we spoke with last week, we decided Saturday after supper and while folding laundry was it. Although it went better than I anticipated, she was not a happy camper.  I was picturing a 13-year old pulling a 3-year old temper tantrum and while it got close, we were able to speak with her and calm her down.  I think she was more horrified by the idea that she hadn't fooled the guidance councillor at school and with the fear that the councillor will tell everyone at school.

Once we got that one out of the way, we were able to explain to her that we felt like we didn't have a choice.  That her behaviour was totally out of the realm of our experience and that we needed some advice.  And that despite her assurances to the contrary, we couldn't just take her word for it that the issue was resolved.  That we wanted her to develop the tools to deal with frustrations/stress without resorting to self-injurious behaviours. It took about an hour but she calmed down enough to smile a little and talk with us.

Afterwards, she and I went for a looooonnnnng car drive (about 2 hours) where we talked about various issues surrounding the cutting and why we wanted her to speak with the social worker.  I really wanted to stress with her that she was important and that her needs were obviously not being met and that we as parents needed to apologize to her for letting her feel that way. 

Self-injury is not a new thing with her; it's something she has done since she was little (picking her fingers till they bled, destroying her work at school...). She even admitted that.  This was now into something we didn't know how to handle and although happy that her friends were trying to help her through it, we didn't see the harm in getting someone else's perspective.  This person would lay out some ground rules for everyone to follow and would be able to guide/counsel her on recognizing the stressors and how to help her deal with them in a more constructive (rather than destructive) manner. It would be confidential and no one need know unless she told them.

I also stressed that she wasn't allowed to throw a book at Taylor (the friend who squealed on her at school) as he was a good friend.  In the end, I don't think she's happy about it but I hope she is resigned to going.  That's all I want.  And for her to be happy and to stop hurting herself.

The Dr. will see you now

So we met with a social worker on Wednesday evening.  Not one related to our CLSC - that would be just useless and frustrating.  She's runs a home for kids with disabilities (which gives her an interesting perspective) and although she's only been working in private practice for a couple of years, she's worked as a social worker for over 20 years.  Her focus during much of that time has been on adolescents and their behaviours.

I found it to be very useful.  It was reassuring to know that our approach so far seems to be the right one and that some things we were worried about can be downplayed.  Her reluctance to eat with her friends for example.  We have been harping on it but in the social worker's opinion, as long as she eats at home which she most certainly does, we don't need to worry about it too much.

Our next step is to bring Emma with us for a meeting.  The social worker will set out the ground rules and establish a baseline for behaviour (ours and hers) and meet one on one with Emma for a couple of sessions to work on developing some strategies for coping with her stress and anxiety.  I found it really interesting how in laying everything out, the anxiety issue has really come to the front.  Makes you wonder sometimes how we sort didn't see it.  Actually that's not true - we did see but just thought "well, she's a kid, she'll get past it at some point".  And she might on her own but the reality is she's hurting herself and that has to stop.

I'd like to be able to trust again.  Right now, that's sort of not an option - not about this anyway.  I found the session really useful.  Now we just have to get her to it.  She'll be pissed but that's life.

Oh my, plinched fingers anyone?

So yesterday, Emma broke her pinky finger at school.  A rogue basketball was the perpetrator.  Apparently it took a wrong bounce and smacked her finger.  The boys gym teacher took a look at it during the lunch break and suggested that it might be broken.  So she and I met up after school and walked in the Emergency room. 

Like a big girl she got xrays and then they put on a massive splint.  We have to make an appointment with plastic surgery in two weeks for a follow-up.  However, when the nurse put the splint on, she saw the marks on her arms.  It was almost funny the way they did it, but once she was finished wrapping her finger, she directed us towards a private exam room and told us to wait.  When the doctor strode in she asked me to leave and according to Emma she said the nurse had noticed the marks and did I (her mother) know about them and was she speaking to anyone.  Emma said yes and then said she was speaking to the guidance councillor at school. They (there were 2 docs) said okay and then left.  I admit I'm a little surprised that they didn't confirm with me 'cause she could have been lying but frankly the marks would have been hard to miss - especially when the nurse was splinting her arm.

After supper we sort of talked about it again, and apparently Sam's mother (one of her friends) is a therapist specializing in teenage issues and she's trying to therapize Emma through Sam.  It's kind of funny but I can see how Emma's getting a little annoyed. She just needs to realize that people are worried.  We are being in a pain in the ass because we care - if we didn't we wouldn't bother.

Obviously she's got lots of friends she can count on which is very nice.  I would like her to speak to someone impartial however.  Still working on it.  We will be meeting with the therapist for the first time tomorrow so I'll let you know how it goes.

Perception is reality

So not much to update yet.  I've made an appointment with a therapist for hubby and I.  We're looking for coping strategies and ways to help kiddo deal with whatever is making her cut.  It was a very stressful week but I think my brain is starting to come to terms with it.  I do admit however, that I heard Pink's F*** Perfect this morning on my walk up from the train and I almost started to cry.  The lyrics just seem to say everything I'd like the kiddo to believe.

Perception is a weird thing.  I know alot of people pick on Dr. Phil but he had some truisms that just made sense.  One of my favorites was "perception is reality".  It doesn't matter how hard someone tries to convince you of something - your perception is based on your reality; wether is a good reality of not is irrelevent; its your reality.  I think that's where kiddo is.  She's got all these people (including the school friend who tattled on her) telling her good things but she just doesn't want (or can't) choose to see it.

In the meantime we've hidden all the sharp objects that she could conceivably use to cut herself with and we continue to talk with her.  Maybe one day she'll be she's important enough to care about herself.

Dealing with scars

So we had a very interesting weekend.  Spent a good portion of it worrying about Emma and talking to her about what she is doing to herself.  It's very difficult to feel so helpless when my child is clearly hurting but all I can do is talk and hope that at some level she is hearing what I am saying.

In the meantime, I've spoken to the guidance councillor at school and I've set things in motion for hubby and I to met with a therapist.  We want to develop some strategies for how to deal with this.  I know Emma just wants to pretend it never happened but it did happen.  We can't ignore it.  Stress is a forever-kind of thing and the earlier she can establish coping mechanisms the better off she will be.  She also has to come to some kind of acknowledgement of what caused it.

It was really interesting talking to her; most of the time she was just 'yah; I know; blah, blah, blah'.  But every now and again, we'd see the truth lurking.  The truth is she is a scared little girl.  She was bullied in grade 5 and it has left some pretty phenomenal scars the depth of which we never quite realized.  Perphas if we had realized we wouldn't be here today, but we didn't.  Now we have to move forward and try to help her heal.

That's the best we can do, I think.

Life goes one one cut at a time

So, it's been quite some time since I've written and quite a lot has happened: I was on strike for three months (not a pleasant time), Veronica continues to grow and gain skills, we've decided that we are going to attend the FAST gala next and we discovered that Emma has been cutting herself.

No one ever tells you that your so-called 'neuro-typical child might very well be the more difficult one.  8 years ago we received this horrendous diagnosis of Angelman syndrome and the doctors tell you what they know (and eventually you figure out they didn't really know what they were talking about); this diagnosis that will take over your life and leave you feeling utterly helpless.  Docs do what they do best and prescribe physiotherapy, occupational therapy, speech therapy and just about every other kind of therapy you can think of.  And before you know it they send you out on your own to deal with the diagnosis. 

No one ever thinks that the rest of the family has also just been diagnosed with this horrible truth.

I have no idea if this has anything to do with Emma's cutting but I figure it must come into play at some level.  She's always been highly embarassed by her sister.  God, on some level I get it.  You just want to be a normal child and not stand out for the wrong reasons and here you've got this sibling that no matter where you go, people stare... On the other hand , she's got this sister who is so loving its not funny.

So we discovered she was cutting several months ago.  I got suspicious when I realized that she was coming out of the shower in the morning and getting dressed right away - I mean with her cardigan and everything.  So one morning, I asked her to pull up her sleeves; and she refused.  Eventually, I tackled her and pulled up the sleeves and saw the marks.  As horrified as I was I was relieved: at least we knew what we were up against.  We did lots of research into how to help and we decided on a tack that seemed to work.  We were checking her arms on a regular basis and talking to her about it and after a while it seemed to get better. 

Then last week, I get a phone call from her gym teacher saying that she hasn't participated in class in about a month and that when she tried to get her to wear a gym uniform, she came out wearing her cardigan on top.  Seriously, and you're trying to hide this?  Then on Friday, I received another call from one of the guidance councillors.  He must have been surprised when I said I knew she was cutting.  What I didn't know, was that often once the first marks are found, cutters move to another part of the body.  She had: her thighs look like ribbons... This was discovered when we confronted her about some bloody kleenex in her pocket and blood stains on her sweatpants. 

I'm at a loss; she won't talk about why, she doesn't want to talk to anyone, she just wants to pretend it never happened... Well, we can't leave it like that.  Tomorrow I have to make a phone call to the councillor and tell him that yes, indeed she has moved to her legs, I have to call our employee assistance program to get a referral for a therapist - we need to figure out how to deal with this.

Oh, my heart hurts for her.