Meeting

Our school meeting went…surprisingly well.  The VP spoke to my daughter like she was a human being, and made her feel like she is part of the decision about how to manage her phone use at school.

She’s happy with the result.  Whether it is helpful remains to be seen – but I know that her buying in is more than half the battle.

So the solution is this:  When a teacher sees her using her phone inappropriately, they will casually walk by and place a hand on her desk. A non-verbal cue, so that she doesn’t feel singled out.  Her job then will be to put it away.

The final thought left with her this meeting was that she has control over what happens next.  If it goes well, then there will be no need to change anything.  If not, she knows that things will escalate.  But, whether or not they escalate is up to her.

It’s a compromise between her phone being a tool to cope with anxiety, and it being a hindrance to schoolwork.

Fingers crossed.

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Detachment, Depletion, and Subjugation

(How’s that for a light and fluffy title?)

There’s a certain conversation I’ve had with many of the professionals involved in my daughter’s care.  She has struggles, of course.  Right now, school and studying are front and centre as we head into exam time.

While she’s extremely bright (like over 95th percentile bright in her psych ed testing) she struggles with the typical things that many people with ASD and/or ADHD struggle with- executive functioning, organization, working through things slowly and methodically, dealing with frustration when things aren’t easy.  It drives her nuts when I say this, but she really does have the potential to do so well.  She interprets this as pressure.

Thing is, she doesn’t because, at the end of the day, she really doesn’t care.  I have to cajole and humour and convince.  She resists.  Then we devolve into yelling, frustration on both ends, and when it’s really bad, tears.  The bottom line, as her psychologist Dr. B has told me so many times…is that I can’t make her care.  It will happen when she wants it to happen. She will reap both the rewards and the consequences of her actions.

Dr. B is always quick to remind me as well that she’s not just a kid with ASD,  she is a typical, defiant almost-15 year old girl and well who is wont to disagree with her parents at every possible opportunity.  Like it is for sport.  Because that’s what almost-15 year olds do.

Better to let her fail now, and understand what that means now, rather than later, Dr B tells me.  My head knows this is right.  But it goes against what I want for her as my child.  I want my child to be happy, successful, capable, fulfilled.

Then I catch myself–all those sentences up there begin with I.  It’s all about me.  This is where I wonder if I am projecting.  If I want her success to be my definition of success.  Then I think about her holding down a job, having to pay bills, meeting her basic needs–and I start to get anxious. And then between the two of us, our collective anxiety spirals up and up until one or both of us has a meltdown of some kind.  This is never pretty.

So the only thing I can realistically counsel myself to do is detach, detach, detach.  Caring while not investing my very being into it, letting her lead her own way, with positive, gentle support and guidance from me in the background.  Remembering that my job is to create a healthy environment to facilitate her own good decision making, give her the right tools–and then remembering that it is up to her at the end of it all to pick up those tools and use them.

***

Too much focus and anxiety over her well-being also has done me harm. It has been a rough two years.  Ex-h’s drama did a number on me, then realizing that he is a narcissist has totally reframed how I deal with him now, and what our relationship was about.  It took me a long time to figure out the latter, and I’m still stunned (and a bit disappointed in myself) that it took me that long to figure him out.

It is time for me to step back and engage in some serious self-care.  I’ve been good at it at various points in my life, but at some point something has always derailed me.  I can’t afford to let that happen any more.  I can’t subjugate my needs to the changing tides of others.

Tomorrow June 1, is day one.  I am going to start by doing something good for me every single day.  I don’t know what it’ll be, big or small, but I have to feel like I am enriching myself in some way.

I’m also starting a new meds tweak – my pdoc has added Wellbutrin.  She thinks it might help with my lack of energy and motivation.  I sure hope so. I am tired of being tired, always being in a rush but walking through mud at the same time.

Wish me luck, oh internets…

The sweet and the bitter

It’s been a hard, hard day.

The girl (for quick reference, as ‘they’ don’t subscribe to binary descriptions of gender) has been riding me hard. This is not new.

There are benefits. She has made grow in ways that were previously unfathomable to be. She is unapologetic about who she is, whereas I, growing up, very much subscribed to a make-the-parents-happy-and-do-not-shame-them kind of model. She’s more honest. I, because of her, have been growing towards that level.

Maybe that’s one of the perks of ASD- the inability to edit yourself to the world. Whereas more typical people, like myself, are constantly angling, politic-ing our way into being…just so. I am growing because of her – more so than anyone else. And, as hard as it is, I am trying…trying…to be grateful for that.

Suicidal ideation

I’m at the local children’s hospital, with my daughter. After a particularly epic meltdown, she told me that she sometimes thought about killing herself. She said that she knows how much of a burden she is to me, to her father, and to her brother.

I have to take this seriously, which explains why we are here, surrounded by sniffling toddlers and weary parents. Every once in a while I glance up and see someone staring, then quickly looking away. I don’t even bother trying to hide my tears. We all have a story, after all.

I feel lost, stuck, scared, worried, hopeless. I wonder about her future, if she will ever be able to tear herself from the internet to make a meal, get to a job on time, or even just brush her teeth. Her internet addiction is that bad.

She has told me over and over that she escapes to her devices because she’s learned to use them as a coping mechanism for the huge anxiety she feels. I believe her, but I don’t think it’s the full story. She doesn’t care about marks, about brushing teeth, about picking up the piles of garbage that quickly accumulate in her room. All she cares about is connecting with her online friends, who live in many different time zones. It doesn’t matter that she has a test tomorrow or a dishwasher to empty.

Her brother is miserable. He can’t stand being around all the conflict. I feel guilty because some days I literally don’t have energy to parent him. When the kids are with me, he wants to go back to his dad’s to escape her, and when they’re at my ex’s, my son wants to be in the peace of my house.

That’s when I catch myself thinking, she’s right – she IS a burden. But she doesn’t get that I do everything I do because I so badly want to see her happy, to see her build a life.

I’m so sad and I don’t think there is any clear path for me to take.

Wicked witch of the west, that’s me

I am having one of these moments where I’m realizing that sometimes, I really don’t like my daughter very much.

Pretty much the second I picked her up from her dad’s she started in on me. I’m mean because I don’t let her have access to the internet 24/7. She tells me she hates neurotypicals. That I’m looking, yes, LOOKING, for ways to make her miserable. And oh, can we pick up Lebanese food on the way home?

I said very little in the car. I tried my best to not react. But, when we were approaching the intersection to turn towards her favourite take-out, I said, I changed my mind.

I’m not going to buy dinner for someone who is actively trying to pick a fight and make me upset.

I said, I can’t change the way you talk to me, the way you treat me. But I can change how I react to it.

And right now, I said, my reaction is that I don’t want to buy you dinner.

She started crying. I kept driving towards home.

***

She denies she is addicted to her screens. (I don’t use the phrase addiction lightly, either.) It’s interfering with her academics, her ability to socialize…everything.

But I have my online friends, she protests loudly.

I can’t even go there.

Her dependence, she says, is a result of her experiences with so-called friends in the real world. She’s anxious, untrusting. She uses her phone as an escape, an antidote to the great stress she feels.

Honey, I say, this is why your father and I are trying to get you help. To alleviate your stress. To build up your social skills, to give you more confidence.

But you’re abusing me by not letting me have internet! You are isolating me from the only friends I have! I bet you wish I was still at dad’s!

I’m clearly the wicked witch of the west.

***

I don’t like her very much right now. That’s a very un-motherly thing to admit. I’m tired of her drama, of her sucking all the energy out of this family. I’m resentful. Her brother, who doesn’t get even close to the amount of attention he should, resents her. I resent her father, who cares about himself more than anyone else and lives through this by faking the motions of fatherhood.

***

There are three floors in this house and right now each of us is on our floor.

At least my son comes to chat once in awhile.

Respite

The last few weeks, I’ve been feeling like the respite I get is in ever shorter, ever more fleeting chunks.  An hour here or there.  Sometimes 15 minutes. Some days it is so bad that being at work, in my understaffed, high-pressure, intense, deadline-driven job feels like respite compared to being at home.

I’m enjoying some respite right now, and if all goes well, it will continue for the next hour and 20 minutes, when I next expect the fireworks of a 14 year old teenager with Asperger’s to begin.

That’s when I’ll be removing all the electronics from her room, as promised. There is no question, she’s an addict.  And she’s going through the classical denial stage.  No one in this house has slept for the last three nights.  She has been sneaking in, or coming in loudly to my bedroom where I’ve hidden it all away.

Last night was the first parent training part of the ABA she will be getting.  The speaker talked about the importance of focusing on one task at a time, and linking it to one specific desired outcome.  I kept thinking, but she has SO many issues…where do we begin?

The one thing I was reinforced with was the need to honour my word.  The device go away at 10:00, so the devices will go away at 10:00…be it easy or be it with drama.  I have for the last two nights managed to do it on autopilot…no, go to bed.  Please go to bed.  You need to get some sleep.  And so on.

I could hear myself, being calm.  But inside I felt weary, like it would never end. Luckily, I am stubborn.  I detached.  I heard someone else saying no repeatedly, like a broken recording.

Later, telling a good friend about it, I broke down.  It is so exhausting.

Take a break, she said.  Get some respite.

I am trying, with this glass in my hand, I am trying and I will take what I can get.

Feelings

The last couple of days I think I have had some of my worst parenting moments ever.  I am doing better but I am still feeling guilty, and sad.

My girl is intense.  When she’s happy she’s HAPPY, and when she’s not, well, batten down the hatches.  Sunday came at the end of a particularly brutal week, which was brutal for reasons completely unrelated to her.  She was angry and anxious and argumentative and completely unwilling and unable to accept advice, or even just sympathy.  Even just getting away from her was futile- she seemed to have a need to rage.  Thing is, I can only be the target of such a rage for so long, and then my own rage comes out.

Anger.  Anger about not being listened to, anger about the lot in life I’ve been given, frustration that I just. can’t. make. her. happy.  Feeling put upon that I am her punching bag, her case manager, her caretaker…all rolled into one harried package.  It is not a nice feeling to resent your own child, especially when they can’t help who they are.

Or, can they?  People are a mix of what they are born with, and what they are able to do by virtue of their own free will, decision-making, or whatever you want to call it.  I vacillate between thinking, none of this is her fault, she is what she is…and then…DAMMIT STOP BEING SO OBSTINATE?  Her psychologist said, you can’t always blame Asperger’s.  Remember that she is also just a typical 14 year old girl with typical 14 year old issues.

As difficult as yesterday was, we made some good progress.  We dealt with one source of her recent anxiety:  drama class.  She switched into a tech class as one of her electives instead.  Drama had far too much group work, and she was constantly being reminded that she doesn’t fit it.  Kids would be told to get into pairs, or groups, and they naturally go with their friends.  Thing is, this girl doesn’t have friends.  In tech class there isn’t much group work, and given how into computers she is anyways…it is probably a better fit interest-wise as well.

She also started her PEERS group program.  Last night was the first session, and so far so good.  As far as I go, it is great to meet a group of parents who know exactly what I mean when I describe how my girl will talk and talk and talk and talk in conversations but not show any interest in how the other person in doing.

I also sent her new teachers a Girl 101 email.  I let them know about her IEP, her quirks, how she is doing, her addiction to her iPhone, etc.  I want them to feel like they have an open line with me, and knowing about her ASD will help them understand why she is the way she is, and how they can help her and their ability to teach her at the same time.

Onwards and upwards.  I am grateful it is a short week.  I am grateful that I remembered to take steak out of the freezer for tonight’s dinner.  I am grateful that her brother is such a good kid.  And am grateful that my Girl is upstairs right now, laughing and relaxing and in a much better place than she was 48 hours ago.

 

 

Parenting fail

I’ve had one of those days where I feel like I have totally and utterly failed as a parent.

I think that yes, it is hard to parent teenagers.  It is hard to parent teenagers as a single parent.  Now add Asperger’s to the mix.

I think of the attribution pie my therapist sketched out for me in one particular session. Let’s look at one of her behaviours. Part of it is genetic. Part is Asperger’s. Part is influenced by the sum of her experiences. Part is the parenting she’s received. Part is the crazy hormonal influence of just being a 14 year old girl. Throw it all together and today we ended up with a miserable, ranting, screaming mess of a girl.

It began when I suggested we all go to my boyfriend’s place for a skate on his lovely backyard rink, to be followed with pizza for dinner. Just a couple of hours hanging out with him and his kids. She went into defiant mode.  She didn’t want to go because she said she felt ‘alone’ around them.

What I think she meant was that she felt apart.  Social situations are tough for a hundred and one reasons that I don’t need to explain to anyone familiar with ASD.  And, her history of being bullied, being ‘friends’ with girls who were fairweather at best, manipulative and game-playing and cruel at their worst, has left scars.  She is afraid of most people her age.  Who could blame her after what she has been through?

Yet I encourage her to try.  She accuses me of trying to change her.  I say, no sweetie, all anyone wants for you is to be happy and to find ways to cope better with situations you find tough.  She says, why don’t the bullies have to change? I can see her point, but the reality is we have to find ways to cope because we can never change another.  She says, mom, you’re a hypocrite.

And such begins the circle of frustration.

I start to panic, feel desperate.  I feel feelings a mother shouldn’t feel about their child:  resentment, anger, even a bit of fury.  Because, dammit, I am trying to HELP you!

She wants help and she doesn’t.  She wants friends that exist beyond her laptop, but she is afraid to approach other kids in the real world.  She’s been burned too many times before.

I expect her to make sense, to tell me exactly what she needs, but of course she can’t.

Guilt sets in.  I am failing her.  I try and I try and I try and I blow it.

Then an hour later I hear her laughing upstairs, with her brother.  And I am in awe because I admire her resilience, her ability to get up and carry on, over and over and over.

She’s my hero.

 

Parenting fail

Two weeks into working full-time, I blew a gasket.

I had a long, wailing meltdown like a 3-year old.  It was awful.  I was angry, tired, stressed, frustrated and probably a whole lot of other things.  Now I feel mostly guilty.

I should have seen it coming.  The kids came back to me Friday evening, as they always do after a week with their dad.  I was exhausted.  We had a simple dinner of pasta, watched a bit of TV, me drinking a little too much wine into the wee hours.  The kids retreated to their devices in the preferred corners of the house, I went to bed and futzed around on the internet doing nothing in particular for way too long.

Yesterday, I started the day badly by sleeping in way too late.  I did some badly needed housework and my mood perked up.  We went out to the thrift store to source some Halloween stuff and spent way too much time poking around.  Rushed home to get the kids dinner before I went out to a work function that I really didn’t want to go to.  I felt pudgy, and like the outfit I put together was Not Quite Right.  It was an overpriced hipster vegan place that I resented spending $75 at.  I couldn’t wait to go home, and I was able to make a reasonably early 9:00 escape, only to come home and be unproductive.

Which meant today was doomed to be one big gong show of housework and putting together an IKEA desk that I fucked up with somewhere along the way and will have to disassemble and do again (thank you, undiagnosed visual-spatial LD).  I regretted agreeing to go see Gone Girl as I had way too much to do, but I felt like I couldn’t bail.  Besides, wasn’t I entitled to a little bit of fun?  I’d been wanting to see it as I had just finished the book, and I was not disappointed.

Then rushed off to meet another friend and her son for a birthday dinner out.  She picked up my kids for me and we all met at the restaurant.  My daughter was pushing my buttons – playing with her phone the whole time until I made her put it away, only to see her sneaking it under the table.  I understand her Aspie-ness, yet it is incredibly frustrating to watch her ignore people around her who actually WANT to talk to her.

Dropped the kids off at home, almost 9:00 pm at this point, only to realize I needed stuff for their lunches.  Off to the store I went.  Fastest grocery shop ever, and I come home to have the son tell me he forgot his backpack (with- guess what?  HOMEWORK!) at his dad’s.  Off to his dad’s we went, me fuming not so quietly and slipping deeper into pity party territory.  He was careful, saying as little as possible.

9:45, we are back home.  The daughter casually mentions how much she loves her online friends.  I reply something to the effect of, that’s great, but you need to carve out time for other things too, like homework.  You wonder why you don’t have real friends?  You shut them out with your phone, your laptop.  You ignore them.

It all kind of exploded from there.

I am so not proud of myself.  I went into my room, and just wailed, for, I don’t know how long.  I felt like a failure as a mother.  Like an all-round shitty person.

I did what I always do when this happens, which is, fortunately, rarely.  I apologized, I made sure I told them that I loved them.  I told them that it is not right that when I am overwhelmed I lose it like that.  That when I am tired, and feeling burdened, I need to find better ways to deal with it.  And again, that I loved them, no matter what, that I get so frustrated because all I am trying to do is make it all right for them.

They are so loving, so forgiving.

I hope I can forgive myself now.

Up…and down.

My girl has been diagnosed with Asperger’s.

While I am not surprised at all, I can’t help but feel sad.  It is the word I have been worrying about since she was 2.  And now it is an undeniable truth.  Not that it wasn’t there before.  I keep telling myself all the right things — things that I know are true — like, she is the same kid she was the day before the diagnosis.  That having a name means she can access all kinds of services that will help her. That her knowing will help her understand that she’s not a bad person, that there are others like her that she can identify with.  That she has so many strengths and that her prognosis is great.

What do I want for her, ultimately? I want her to be happy.  

Maybe my struggle is what happy will look like for her versus what it would look like for me.  I think as a parent we all have a dream for our kids, our version of a good life for them.  Maybe the battle is to reconcile that what their happy is, isn’t necessarily the same as ours.  And really it is their life, and it is unfair of us to project our definitions onto them.  

And right now, the reality is, she is doing pretty great.  She IS happy.  She feels good about her diagnosis…even better than good — optimistic.  

I am so proud of her.  And I love her madly.

***

And in me-land, I am…I think doing better.  Thursday (the day before the girl’s diagnosis) I had the best day I’d had in weeks.  I got a ton done at work, had a relaxing, fun, evening with G.  I even thought about the feedback appointment the next day and how we’d likely be talking about an Asperger’s diagnosis, and I felt good about it.  I was even looking forward to the appointment.  

Then hearing it of course…it felt like a thud in my heart.  But I talked to people about it, her dad, my two closest friends, and of course G.  That helped.  I did shed some tears…partly of sadness, but partly of relief.  Relief that we know more, relief that now we can forge ahead in getting her help in the few areas she needs hit.  And love — I felt love.  Love for the girl, love for me.  And love is strengthening and empowering, only a good thing.

We will forge ahead, in love.