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What’s In Your Cup?

Part of this whole crazy process is the pleasure of dealing with some really great professionals. Our team, for the most part, has been really fantastic. They will engage with me as much, or as little as I want. If I show the willingness to learn and engage, they do their best to communicate and teach.

Recently our psychiatrist got a new resident. I realize that the ACH is a teaching hospital, but changing teams along the way can be very hard, and in our case, almost disastrous.

I am not an expert in many things. My education is music, and most recently coffee. I work in the service industry, so I deal with many different kinds of people all day long. I learned when I was young that communication was important, but have realized even more in my career that it is essential for success.

Now I’m not the kind of person to cause a rucus. I’m pretty reasonable and fairly easy going. I’m not a scholar, and school wasn’t my strong point, but I don’t think that should really matter. Treat others the way you want to be treated. Love one another. Words im passionate about. I have taught my children to act that way, my employees, and that’s how I act. HOWEVER, if you want to ruffle my feathers, talk to me like I’m stupid, or treat me like I’m dumb. Go ahead. I dare you. The result isn’t going to be good for anyone – especially if one of my cubs is involved. The mother bear will rise and show her teeth.

When my daughter was first admitted, we talked about depression medication and that it would be necessary. We were given 2 options (sort of anyways, we were told about 2 different kinds), Prozac and Zoloft. Both have positives and both have risky side effects. One side effect is increased suicidal thoughts. This is terrifying, especially when you’re dealing with that already. Make it worse? Really?

I wanted to go with the Zoloft. One of my boys has had great success with it, and I used it for post partum depression. The Dr considered that but decided Prozac was the way to go, so we agreed, listened to the risks, signed the forms and forward we went.

As time went forward we slowly saw a small brightening of her mood. Within a week we had an escalation, then another, and another. They decided to add on a drug called Syraquil. It makes you drowsy, which could slow down the suicidal thoughts and increase appetite, which in this case would be good. At first it knocked her out and visits were like seeing a zombie. She said she was so tired that she couldn’t do anything if she wanted to. As she continued to get accustomed to it, they increased the dose. Eventually it wasn’t working enough, so they asked if they could add a small morning dose to ease the morning anxiety. Once again, we agreed. That one wasn’t so easy – took some convincing to get my X to agree but I felt it was ok.

Things seemed to improve slightly, but we were now at a large dose of the Prozac and 2 different doses of syraquil, yet the improvements didn’t seem big enough.

Along the way my X was pushing for shock therapy treatments. He wanted her chipped (still does), and would always be disagreeable to increases. They have to have approval from both parents, so sometimes that is good, and sometimes more difficult.

After 3 months of being stuck, we talked and requested a medication change, with the understanding that she would remain in hospital till the change was completed and she was stable. Within days I noticed a change, and the Dr agreed, so we decided to continue forward, now on the Zoloft. We made a plan, a solid plan, and were going to stick to it:

Change meds
Stabilize meds
Get in to ADTP
Transition from ACH to ADTP
D (discharge)
HOME!!!

Seemed pretty clear to me, to the counselor, to the psychiatrist, but not to the resident. The problem came in when the Dr. (Psychiatrist ) went on a holiday for 2 weeks and left the resident in charge. Now remember, parents always have to give approval for starting, stopping or changing medication.

Problem 1.
The resident was having a session, and told my daughter that she was just looking for attention, and needed to get with the program. If she didn’t, she would get transfered to a facility and be held for 5 years until she was 18. Distorted thinking or not, this sent her in to a tail spin. When I went in to visit, she was beside herself thinking I was going to have her locked up for 5 years. I was horrified, talked to nurses and they had no clue of any facility like that existing. The next day I called the resident to discuss the situation, and where this facility is, and what on earth he was talking about. Remember how I said I don’t like being made to feel stupid? The mama bear appeared! I was so upset by his condescending, disrespectful tone to me. I couldn’t shake it – and I couldn’t let it go. All he did was side step, and speak to me like I had no idea about anything. I called our counselor, who gave me the head Dr’s direct number and registered an official complaint.

2. D
We don’t say the D word, because every time we do bad things happen. After that session, the resident decided they may as well just send my daughter home. “SAY WHAT?!” That wasn’t the plan. I called again, and he said he saw no reason to keep her there. Again, I called and complained. My words were heard and rhe plan would continue.

3. Medication change
The resident called me and said he’d like to boost the syraquil to a larger morning dose. I guess he figured if he kept her tired enough, she wouldn’t do anything. The plan was to increase the zoloft, not the syraquil. I asked why the change and he couldn’t give me a reason. He didn’t call her dad for approval, and went ahead and doubled it. After 2 days I found out and called again. This time I asked to speak to the head honcho to find out why dope her in to exhaustion instead of treating the depression? At the end of the conversation we couldn’t agree, so we agreed to disagree. I asked for the increase to stop, and for no changes to be made till OUR Dr returned and we could discuss the plan again. Do not pass go and do not collect $200.00!

Troubled with all of this, I called our counselor and stressed my concerns. “I’m no Dr and I’m pretty sure he’s not a Coffee Master. I don’t trivialize him when he doesn’t know what’s in his cup. I expect the same treatment back”. They got the point.

You have the right to know what’s going on with your child and what course of action is being taken. Don’t be afraid to ask questions and don’t take everything as gospel. Have conversations, stay in touch. Call for updates, request face to face meetings and if need be, go a step higher.

They know me well at ACH. I wave to cleaning ladies, smile at porters. Security nods their heads, and the cafeteria lady knows I’m just getting hot water – same as always. The angry parking lady sees me pass her almost every day. The nurses, and there are many of them, pretty much have a nick name for me now they’ve seen me so often. They drink my coffee, have donations in their craft room from my company, and even occasionally get a batch of Dr Who cookies or muffins to munch on during the night shift.

Stay in touch. Do your due diligence. Knowledge is power – be proactive, not reactive. Most of all, be respectful. It takes a team to make this all work.

We have a plan. Small detours happen, but our goal is in sight.

Get help. Reach out. You can do this.

Change Is Inevitable

“We’re not taking your daughter in to the eating disorder program. We think she’s better suited for ADTP – Adolescent Day Treatment Program ”.
Those words will ring very clearly in my ears for a long time. It was explained to me ( and I think I’ve already mentioned this before), that out of the kids who die from eating disorders, 50% of those deaths are from suicide. Treating the eating disorder is like treating a branch. You still have a sick tree.
After that appointment, I had to head back to ACH for an appointment with our family counselor to discuss how things had gone at the meeting. I was feeling down, and discouraged. I sat down in one of the counseling rooms, and talked about the morning, going alone, listening to my options. We started talking about the ADTP program, and the fact there is a waiting list, so although we didn’t know exactly when she’d get there, the chances were that she would. This was a little frustrating because if I talked to a Dr., they said 2 weeks, and if I talked to a counselor they said up to 5 months, and nurses – they had no idea. My emotions were starting to feel like a yo-yo.
The counselor talked on about the environment, what we could expect, and then she said, “the age of the kids at ADTP is 13 – 17, but mostly 15-17. Your daughter will be the youngest person there. They will discuss strong topics, including suicide, depression, bullying, drugs, even sex………..”.
At that moment time stood still. I was holding a book in my hand and covered my face with it, and the realization that life would never be the same became very, very real. My little girl was never going to be the same. She was going to be with older kids. Suffering older kids. I swear I felt my heart tear apart inside my chest. I’ve said before I’m not usually a crier, but at that moment I cried, out loud – I actually sobbed out loud, like I never had in my life. I felt for a moment that my child had died (or at least I’m pretty sure that’s what it would feel like). I’m not meaning to disrespect anyone who’s lived through that, but it was like a movie, where you see someone burst out with hideous sobbing, unable to even sit up in their chair. I covered my face and just couldn’t quit. My little girlie…………
I apologized to the counselor and was embarrassed, after all my daughter is still here and my behavior must have looked ridiculous, but the shelter of the ACH was going to be gone, and now we would be in the real, tough, scary world. I felt heartbroken for what she has been through, what my boys, my fiancé, my family, and what I had been through, and I knew at that moment it wasn’t about to get easier any time soon.
Here is a bit of info on the Adolescent Day Treatment Program in Calgary. This is a referral program only for kids suffering deeply from all of the issues my daughter is going through. It’s run by the same man who runs the Eating Disorder Clinic in Calgary, so they are familiar with many different issues. Once your child is accepted, they go in to a 3 part program that will eventually integrate them back in to the normal school system. They are assigned a CBE teacher. Yoga and phys. ed. are mandatory classes, as well as 2 other classes each day. They also get intense group, private, and psychiatric counseling by one solid team. Parents must attend a caregiver support group once every 2 weeks. There’s a cook on sight that makes breakfast and hot lunch for the kids. They attend daily but dont go on stat holidays or CBE PD days.
Really when it boils down to it, the program sounded great (once I was past the shock of how quick my daughter was going to grow up). The kicker was the transportation. We don’t live in the city, nor do I work in the city, but my daughter was going to have to be there every day and the ACH wasn’t going to provide transportation. When I got home I decided to email the principal at my daughters school and ask if there were any provisions for transportation through our school board. If not, I was hooped! To my amazement and delight, the school division we are in does provide transportation for students needing support in different districts. AMAZING NEWS! Absolutely a completely amazing piece of news. The stress of transportation would no longer be something I have to worry about. Complete relief!
There is help out there, and I’m learning that all I have to do is ask. This isn’t an easy thing for me, but I am learning. I’ve been told over and over and over again by my own counselor, and by my daughters family counselor to ask for help, pull in my resources, this isn’t time to try and be a super hero. “You need support” they always say. I find it much easier to give than to receive, but in this case, I was ready to receive with arms open! Having that transportation help was the difference between hardship at my job, safety risks, and knowing that I know where she is from when she leaves home in the morning, to when she returns home.
If you are suffering through this, or know someone who is, ask for help. Call the help lines, go to the hospital, talk to someone, DO SOMETHING.
Get help – don’t give up. There is help out there – and people need to know. Don’t be afraid to talk about it.

Restless

“Hello?”

“Hi, this is the ACH calling, how are you this evening?”

“…………Fiine………..thankyou…..”

“Well, that’s good.  There’s been an escalation tonight.  It was pretty serious, but everything is ok”

“Really?  But the day seemed so good…I don’t get it…is there anything I need to do?

“No, everything is ok now.  The team will call you in the morning”

“Can I speak to her?”

“No, that’s not possible right now”

“Ok, thanks for calling me.  Please let me know if there is any change”

“Will do, have a good sleep.”

“Sleep?  Right.  I guess I should sleep.  Thank you”

I’ve had that call 5 times now.  I can’t quite describe the feeling.  I actually have felt the blood run out of my face.  The fear is intense and the sadness overwhelming, however as I begin to understand, the intensity does lessen.

Over the last 4.5 months, we have been through 2 residents, many, many nurses, TA’s (therapy assistants), and have had 1 main family counselor and 1 main psychiatrist. You would think that with all of the intense counseling, classes, treatments, cognitive behavioral therapy (CBT), dialectical behavioral therapy (DBT), sessions and medications that everything would be fixed by now.  That’s just not how mental health works.  It’s complicated, twisted and has many layers to it, and revisits in different ways.

Have you ever tried to lose weight?  I have, and it’s brutal.  I really thought I succeeded a few times, but for some reason it keeps coming back.  You make the decision – I’m going to lose weight.  You set yourself up, clean the pantry and get rid of temptations, put some positive slogans around the house, set up a good app on your phone, and you might even join a support group.  The first day goes pretty good.  “I can do this, oh yes I can.  I’ve got this.”  First day goes pretty good.  Can’t say you don’t think about eating a big bag of chips, or perhaps getting the pastry along with your coffee, but you don’t do it.  You’re tempted, but you don’t.  The first week goes pretty good.  A few minor challenges, but overall, not too bad.  Week 2 comes.  You’re a little tired, maybe discouraged a little, but still trying to focus on the goal.  You make it through breakfast, and you’re still a little hungry.  Have a glass of water, think about something else, go for a walk, get out of the kitchen.  You know this is what you have to do.  You know it so strongly, but for some reason, something speaks to you – maybe the fluffy white bread you bought for your kids is now calling your name.  You know what to do, but before you know it, you’re elbow deep.  You’ve not only made yourself a couple extra pieces of toast, with butter….and what the heck, jam too, but you’ve also scooped up a spoonful of peanut butter to eat while you’re putting the rest together.  You finish the toast, so quickly you don’t even really taste it – and the peanut butter is stuck to the roof of your mouth so the 20 oz. of juice you just chugged was totally necessary.

The aftermath of that experience is never good.  Guilt, frustration, disgust, disappointment.  How could I loose control like that! I just ruined all the hard work I’ve done.  Oh well, tomorrow is another day.  Eventually, the distractions and temptations are so overwhelming that you just give up.  Whatever, I can’t do this!  Why do I even try – this just never changes.  People say to you “just quit eating so much”, “go for a walk – just exercise more”, “just put your mind to it”, “all it takes is willpower”.  If you’ve tried, you’ve heard all of this – I know I sure have.

Now, lets take this scenario, and put it to mental health – specifically depression and anxiety. (I now believe that being over weight is just as much a mental health issue as anything else, but that’s a different discussion). A person feels depressed, and I don’t mean just a little down, I mean clinically depressed. They fight hard and say all of the same things as above. “I can do this.  I’ve got this.  Things aren’t really that bad.  There’s a light at the end of the tunnel”. The problem is, when you’re in the hole of depression, it doesn’t matter how much positive thinking and talk there is, it just doesn’t work – at least not until you’re ready.    It’s like being a tiny little creature in the middle of a big bucket of swirling water.  It desperately treads water, trying and trying, sinking a little bit more each time.  It might come for air a little bit, but no matter how hard it tries, it cant even see the edge of the bucket, let alone reach it.  People who are depressed can be ok for a time.  They try, stay distracted, use their tools, perhaps try and follow a safety plan, but sometimes things just come unwound and before you know it, they’re elbow deep.  The tricky part is that even though they may get through this one, they know another one is coming, which can be incredibly discouraging and overwhelming.

Sound hopeless?  Not at all.  That tiny little creature above somehow comes up with a last little piece of energy, changes direction, flips things around and starts inching towards the edge.  Why?  The bell rang.  Something happened that made sense and gave the little guy the will to live more than the desire to quit.  That desire to fight was ignited and the edge of that bucket came in to site.

I have had numerous conversations with the entire medical team, and often with my daughter about this very theme.  “Just try. Remember you’re tools.  Don’t you want to come home?”  It wasn’t until yesterday that I realized that for some reason, the bell hasn’t rung yet. I also learned that she is just as frustrated as we are, questioning why can’t I do this, when so many others seem to be able to. Pieces are there, and ocassionally there is a small light, but often still, the dark moments are so overwhelming that fighting through seems hopeless.

This is where we come in.  Don’t get me wrong, this is terribly frustrating, but if we quit being impatient, stop thinking about what we want and start thinking about what people need, we can begin to understand and be there for support.  Often there’s no need to even say anything.  A serious bout of depression or anxiety leading to an escalation can be terrifying to the one experiencing it, and I’ve found by just being there, and not saying anything at all, you can show how much you care. We don’t need to mock, or judge, or criticize when faced with someone in crisis.  Be there.  Stay neutral.  Try and listen or understand  how hard it really is, and just love unconditionally.  Most of all, don’t give up.  The bell will ring eventually – I have to believe that.

We need to talk about mental health.  The only way the stigma will disappear is if people start talking, stop judging and try to understand.  It will happen – it will.

Ring bell, Ring!

“Hello?”

“Hi, this is the ACH calling, how are you this evening?”

“…………Fiine………..thankyou…..”

“Well, that’s good.  There’s been an escalation tonight.  It was pretty serious, but everything is ok”

“Really?  But the day seemed so good…I don’t get it…is there anything I need to do?

“No, everything is ok now.  The team will call you in the morning”

“Can I speak to her?”

“No, that’s not possible right now”

“Ok, thanks for calling me.  Please let me know if there is any change”

“Will do, have a good sleep.”

“Sleep?  Right.  I guess I should sleep.  Thank you”

I’ve had that call 5 times now.  I can’t quite describe the feeling.  I actually have felt the blood run out of my face.  The fear is intense and the sadness overwhelming, however as I begin to understand, the intensity does lessen.

Over the last 4.5 months, we have been through 2 residents, many, many nurses, TA’s (therapy assistants), and have had 1 main family counselor and 1 main psychiatrist. You would think that with all of the intense counseling, classes, treatments, cognitive behavioral therapy (CBT), dialectical behavioral therapy (DBT), sessions and medications that everything would be fixed by now.  That’s just not how mental health works.  It’s complicated, twisted and has many layers to it, and revisits in different ways.

Have you ever tried to lose weight?  I have, and it’s brutal.  I really thought I succeeded a few times, but for some reason it keeps coming back.  You make the decision – I’m going to lose weight.  You set yourself up, clean the pantry and get rid of temptations, put some positive slogans around the house, set up a good app on your phone, and you might even join a support group.  The first day goes pretty good.  “I can do this, oh yes I can.  I’ve got this.”  First day goes pretty good.  Can’t say you don’t think about eating a big bag of chips, or perhaps getting the pastry along with your coffee, but you don’t do it.  You’re tempted, but you don’t.  The first week goes pretty good.  A few minor challenges, but overall, not too bad.  Week 2 comes.  You’re a little tired, maybe discouraged a little, but still trying to focus on the goal.  You make it through breakfast, and you’re still a little hungry.  Have a glass of water, think about something else, go for a walk, get out of the kitchen.  You know this is what you have to do.  You know it so strongly, but for some reason, something speaks to you – maybe the fluffy white bread you bought for your kids is now calling your name.  You know what to do, but before you know it, you’re elbow deep.  You’ve not only made yourself a couple extra pieces of toast, with butter….and what the heck, jam too, but you’ve also scooped up a spoonful of peanut butter to eat while you’re putting the rest together.  You finish the toast, so quickly you don’t even really taste it – and the peanut butter is stuck to the roof of your mouth so the 20 oz. of juice you just chugged was totally necessary.

The aftermath of that experience is never good.  Guilt, frustration, disgust, disappointment.  How could I loose control like that! I just ruined all the hard work I’ve done.  Oh well, tomorrow is another day.  Eventually, the distractions and temptations are so overwhelming that you just give up.  Whatever, I can’t do this!  Why do I even try – this just never changes.  People say to you “just quit eating so much”, “go for a walk – just exercise more”, “just put your mind to it”, “all it takes is willpower”.  If you’ve tried, you’ve heard all of this – I know I sure have.

Now, lets take this scenario, and put it to mental health – specifically depression and anxiety. (I now believe that being over weight is just as much a mental health issue as anything else, but that’s a different discussion). A person feels depressed, and I don’t mean just a little down, I mean clinically depressed. They fight hard and say all of the same things as above. “I can do this.  I’ve got this.  Things aren’t really that bad.  There’s a light at the end of the tunnel”. The problem is, when you’re in the hole of depression, it doesn’t matter how much positive thinking and talk there is, it just doesn’t work – at least not until you’re ready.    It’s like being a tiny little creature in the middle of a big bucket of swirling water.  It desperately treads water, trying and trying, sinking a little bit more each time.  It might come for air a little bit, but no matter how hard it tries, it cant even see the edge of the bucket, let alone reach it.  People who are depressed can be ok for a time.  They try, stay distracted, use their tools, perhaps try and follow a safety plan, but sometimes things just come unwound and before you know it, they’re elbow deep.  The tricky part is that even though they may get through this one, they know another one is coming, which can be incredibly discouraging and overwhelming.

Sound hopeless?  Not at all.  That tiny little creature above somehow comes up with a last little piece of energy, changes direction, flips things around and starts inching towards the edge.  Why?  The bell rang.  Something happened that made sense and gave the little guy the will to live more than the desire to quit.  That desire to fight was ignited and the edge of that bucket came in to site.

I have had numerous conversations with the entire medical team, and often with my daughter about this very theme.  “Just try. Remember you’re tools.  Don’t you want to come home?”  It wasn’t until yesterday that I realized that for some reason, the bell hasn’t rung yet. I also learned that she is just as frustrated as we are, questioning why can’t I do this, when so many others seem to be able to. Pieces are there, and ocassionally there is a small light, but often still, the dark moments are so overwhelming that fighting through seems hopeless.

This is where we come in.  Don’t get me wrong, this is terribly frustrating, but if we quit being impatient, stop thinking about what we want and start thinking about what people need, we can begin to understand and be there for support.  Often there’s no need to even say anything.  A serious bout of depression or anxiety leading to an escalation can be terrifying to the one experiencing it, and I’ve found by just being there, and not saying anything at all, you can show how much you care. We don’t need to mock, or judge, or criticize when faced with someone in crisis.  Be there.  Stay neutral.  Try and listen or understand  how hard it really is, and just love unconditionally.  Most of all, don’t give up.  The bell will ring eventually – I have to believe that.

We need to talk about mental health.  The only way the stigma will disappear is if people start talking, stop judging and try to understand.  It will happen – it will.

Baby, You’re Not Lost

2005/2006.

My youngest was pretty little, but all 3 kids were and still are really in to music. I’m a huge Micheal Buble fan, and would play one of his earlier CDs non stop. There was a song on there that my daughter loved. She would make every one be quiet and would sing at the top of her lungs. If I tried to sing along she’d tell me to be quiet and would start over again. The boys got a kick out of at first, and then just got really irritated. After awhile they’d beg me not to play the CD.

At some point I lost the CD – couldn’t find it anywhere. For years I wondered where that CD disappeared to but couldn’t find it.

2015

I found the CD. I don’t know how, but I found the CD. I decided to pop it in the player so next time I wanted a change I could put it on in my car. I picked my daughter up for a pass, this time just running errands. Anything was better than sitting in the hospital, so I picked her up and off we went.

As usual, she bounced around from CD to CD until she came upon the one. She looked at me and said “no way! Remember this? How did you find it?” She switched to the song, and began to sing:

For you are not alone,
I’m always there with you,
And we’ll get lost together,
Till the light comes pouring through.
When you feel like you’re done,
And the darkness has won,
Babe you’re not lo-o-ost. ……

Instantly me eyes welled up with tears. I really tried not to cry. I choked a little and pretended to have something in my eye, but it was too late. The flood gates opened and I couldn’t stop. She was just singing the song, but I was really feeling it. The words rang so deep within me – “when the world comes crashing down……”. The world indeed seemed to be crashing down.

Of course, if you know me, I’m not not a very pretty crier. I don’t manage to keep a clear face and be all beautifully tragic like the movie stars do it. The one single tear streaming down a cheek. Nope, not me. I get red and blotchy. My nose goes purple and eyes beet red – not a great sight. My daughter looked at me and couldn’t understand why I was crying. Of course I said I was just over tired and happy to see her, waited out the song and put something upbeat on. There was no connect in her brain between the emotion and words of that song. Front brain vs. back brain – she didn’t get it.

I think a lot of us have frustration with our kids. We want them to be emotional, hurt, cry, shout for joy, get angry, but often they just don’t. I didn’t understand why until this week. Disconnected front and rear lobes. Makes perfect sense.

After I dropped her off and knew she was safe and sound, I got back in my car and turned the song back on again.

I can’t believe it’s over
I watched the whole thing fall apart
And I never saw the writing on the wall
If I only knew, the days were slipping past
That the good times never last
That you were crying

Summer turned to winter and the snow it turned to rain
And the rain turned in to tears upon my face
I hardly recognize the girl you are today
And God I hope it’s not too late.

I haven’t cried that hard many times, but I had to let it out, and that day I cried for hours. All the way home. All the rest of the night. And then to sleep.

Every time I see my daughter now, I make sure to let her know she’s not alone. The light will come back. She is not lost.

Be strong. Get help. Reach out.

Check Engine

I drive a little yellow VW bug.  The engine on my Honda died, so I sold it for parts, and my dad and I headed for the auction lot to find something that matched the money I had in my pocket.  We came upon this little yellow bug.  I’m not sure how long it had been there, but it needed a boost to get started.  We drove it around the lot and decided it fit the bill(s).  There was no warranty on the car – and they warned us once it’s off the lot, it’s yours.  We drove off the lot – me in the vw, and my dad behind me incase there was a problem.  The electronics didn’t seem to be working, but it was driving ok.  Some of the lights were coming on and off, but we were headed to the shop to get it checked, so I wasn’t terribly worried.  After a little driving, some of the lights went off, and the signal lights started working – I didn’t have to stick my arm out the window to signal anymore.  We did the regular checks on the car.  Breaks were good, oil fine, battery needed changing, lights in the rear needed some bulbs – nothing hugely major – all very doable.

After having the car for awhile, things started popping up.  The engine light went on – ended up being the sparks and plugs.  The boys at the shop got them fixed up and it was all good.  The engine light went on again – this time it was the water pump.  After awhile, this engine light thing started stressing me out – big time.  The car didn’t come with a manual, which meant every time the light went on, I didn’t have a clue what for.  On it came again – this time, something to do with an oxygen sensor.  They said there is no point fixing it at this point (can’t remember the reason), but now I live with the stress of that darn engine light coming on whenever it pleases.  I know why it’s on, but it stresses me just the same, every single time.  When it goes off, I breathe a sigh of relief.  I know the problem is still there, but the light isn’t on, so I don’t have to worry about it.

Mental health is just like my check engine light.  No manual, and no real idea why it happens when it does.  In my situation I know its there, but sometimes things seem just regular and the light goes off – I don’t even think about it.  Life can be just rolling along and then bang, the engine light goes on and all hell breaks loose.  We can be out on a pass, perhaps at the mall walking around in circles because home is too far away and we have to be in public, and things seem just fine.  The conversation is going great, and then all of a sudden, that check engine light is flashing.  There are signs sometimes that you can notice – fidgeting, lack of focus, erratic behavior, and sometimes its as quick as “we need to go.  NOW”.  In those moments terror strikes.  Why?  Because there is no manual, and no way to really know what is going on and how serious it’s going to be this time.  That’s the terrifying thing about mental health issues – the picture you see on the outside, is not the same as on the inside.

Another tricky thing is mental health issues take many forms:  anxiety, depression, OCD, ADD, ADHD, schizophrenia, psychotic behaviors, eating disorders, self harm…….and I’m sure I’ve left out a whole bunch of others.  Mental health does not mean you walk funny, or need an organ transplant,  you’re not in a wheel chair, and in most cases you don’t look sick.

What do you do when the light goes on?  Reach out for help.  Go the hospital and tell them what’s going on.  Go to your Dr. and talk to them.  If you have to, call 911.  Get counselling if you can, and not only for your child.  Go talk to someone who is neutral and can help you understand. One of my bigger fears was that I would be questioned for being a bad parent – never happened. There are entire departments set for mental health illnesses.  Yes – mental health is an illness just like anything else.

I’m still driving the bug.  At this point, the engine light is on regularily.  Do I know why – no, and truthfully, I don’t really want to know because I can’t fix it anyway, I just need to drive.

Stop the stigma.  Get help.  Reach out.

Home………..Away From Home

I’m not a terribly emotional person.  I didn’t cry when I left the hospital the first time and had to leave my daughter behind.  I was exhausted, sleep deprived, confused, and really did not know what was happening.  I’m sure I’d be judged on many fronts (that’s why I haven’t really shared anything before). ” How does a mother go that long without knowing her child is having issues?“  “If she was really in tune with her kids, she would have known”. “She works too much.  She should have been there more often”. I know I’ve said these very things to myself.  My range of emotions was huge, but I didn’t cry.  Not at first, anyways.

The mental health ward is on the lowest level of the ACH.  You walk past oncology (I always say a prayer), immunology, ultrasound, diagnostics, emergency and then to an elevator just before PICU that takes you down.  After passing through the 3 different security doors, you enter in to a large open room.  I know I’ve talked about this before, but I want you to have a clear picture.

Contrary to popular belief, there aren’t kids banging their heads against the walls, screaming, drooling, moaning – all the things tv and movies make out mental health issues to look like.  Quite the contrary.  There are a maximum of 14 kids there at any given time, and numerous nurses, TA’s and security guards too.  You see sweet looking, happy faced little boys – no different from my own nephews.  You’ll see extremely thin, perhaps gaunt girls (and sometimes boys), that obviously are struggling.  You may see teens with brightly colored hair, often smiling and chatting.  Sure, ocassionally there will be an escalation where something has gone terribly wrong, but I find this happens more at night and isn’t a 24/7 occurrence.  When it does happen, they respond quickly and are able to block the patients on one side of the ward while they deal with it on the other.

The kids participate in intense programming and therapy.  They take yoga every day, have physical activity – probably more then they’d get elsewhere.  They have group therapy together, sometimes teen therapy (depending on the dynamics and patients at the time), counseling sessions, psychiatric sessions, family therapy sessions, individual work and sometimes a small amount of individual free time.  Friendships among patients are discouraged – they aren’t allowed to share much personal information, but they always seem to find a way.  There are 10 or so individual rooms, and a group room that will hold 3.  Each room has a bed, a bathroom, a closet, and sometimes a small desk.  The rooms and kids are subject to searches every day.  There are no secrets – or so they say, but as expected, the kids always find a way to smuggle or get things in.  There are 3 “NPR’s” that are small rooms with rounded walls and floor joints that your child might be put in if they are out of control.  There is also a high observation room for kids who need to have eyes on them 24/7, and need to be kept away from others.

There is a small but fully equipped kitchen where the meals are delivered to daily.  The kids are given hospital menus and choose what meals they want every day.  The meals are gross – really gross, but somehow the kids manage to eat.  Chicken parmesan has taken on a whole new meaning!  The kids have strict eating rules.  Eat at your assigned table.  Feet on the floor.  Finish (in our case) 50% of what you’re served.  Clean your dishes.  There are snacks like juice, milk, fruit, muffins and such that are made available a few times a day.  They keep toast and condiments on hand as well, so when all else fails they will eat something.  Sometimes they make, and burn, popcorn, and even cupcakes.

In the evening things get a little less serious.  Tuesday is bingo night – the prizes are amazing and the kids have a lot of fun.  This is up in the main cafeteria and patients throughout the hospital are allowed to attend.  Wednesday night is pet night on the 4th floor.  They have loveable dogs, cats, sometimes bunnies that the kids interact with.  Thursday night they have a clown named Sparkles that does a magic show.  She does face paint sometimes as well.  Other nights they will watch a movie, or sometimes do a craft.

Once a month or so there is a special family night.  The kids are allowed to invite a family member and share a special meal prepared by volunteers.  It’s a pretty big deal, the food is real, and the kids get to show off a bit.

Sound normal?  That’s the point.  It is.  Normal. The situation itself might not be normal, and it is frightening to leave the child you tuck in every night behind, but for the most part, the people suffering from this are just like you and me.  Small kids, teens, adults, seniors.  There is no distinguisher.

The stigma behind mental health does not show regular, every day people.  It’s not talked about, and people really have no idea.  1 in 3.  Look around you.  1 in 3.  Try not to judge.  Try and understand.  See it for what it is and if you even think for a moment that someone might be suffering, reach out and try to help.

If your child is at ACH, they will get great help.  The staff there works very hard to get your child safe enough to return home.  The average stay is about 2-3 weeks, but that doesn’t mean the average fix is.  As I was told this week, we need to watch vigilantly, choke back the emotion and be rational, and try to understand.

Don’t let go.  Get help. Reach out, and please, please get help.

Go Big, or Go Home

“Hello?”
“Ms. Johnsen?”
(Why is the principal calling?)
“You’re daughter is missing……we can’t find her…..”

I’m not sure…..actually I’m very sure…….those are the most frightening words you’ll ever hear in your life.

As the mental health team works on trying to get your child home, they start testing the waters (so to speak) and slowly start putting your child back in to normal situations to see how they will react. It starts with a pass for a few hours. You go to the mall, have ice cream, buy a new tshirt (over compensation for guilt can be expensive) and spend a few hours pretending it’s just another day out, trying to feel normal. After a few successful tries, a trip home, then overnight, then a school trial. Its terrifying. They prepare a safety plan – what will you do if things start unwinding? You prepare your own safety plan and start trying to remove obstacles in your home that might be harmful. It was her safety plan (and I warned the team) where things came unwound.

“How long has she been gone?”
“About 20 minutes we think. We’re not exactly sure”
“Have you searched the school?”
“We’re doing that now”

At that point all life ceases to exist and you become hyper focused really quickly. I cannot urge you enough – if this happens to you, stop for a brief moment, breathe deep and listen to your gut. You are no good out of control, and your instinct just might save a life. I’m not going to go through all the details just out of respect to my kids. That was the most traumatizing day of my life . Here’s what I did. 1. Called the hospital – warned them of the situation. 2. Called my son and started my own search party where we both agreed to look. 3. Call the RCMP and use the words mental health – they take that seriously unlike many others. 4. Jump in my car and go search myself.

How far can someone go in 20 minutes? The picture playing in my mind was very different than the actual situation, but it didn’t matter – I was terrified. You see, I don’t think most people set out to do something wrong. Don’t be mistaken, with this kind of illness people do wake up and say “today’s the last”, but often mistakes and bad choices unwind in to something that wasn’t meant to happen.
We began to search and our gut instincts were right, she had headed for the river. At one moment spotted, standing at the edge of the bridge, and then the next running from her brothers shouts. Thank goodness he got there fast. We both jumped out of our vehicles and started searching. “How did she disappear again so fast?” We both split up, frantically searching and calling her name. I went one way, he went the other. Within moments I saw RCMP everywhere. On the other side of the river cars started pulling up with regular people stepping out of their cars, lining the river looking – a local search and rescue effort. My son headed down the side of the hill to the river bank, cutting his arms and legs on the ice and rocks. (Of all the days to wear shorts!) At one point he was running and fell in to the icy bank, soaking himself, but I don’t think he even notices. A lady came walking by and asked what we’d lost. At that moment I stopped and turned. I’m sure I was as white as the snow and I quietly said, ” my daughter. I can’t find her and I don’t know what to do”. There were police officers everywhere, or at least that’s how it felt. I was standing in a field of snow, still in my work clothes and leather work shoes, looking down at the river. “Please God, don’t let me see her there”. I looked up at the sky and started to scream “Where do I look?!!!! Tell.me what to do!!! I DONT KNOW WHAT TO DO!!!!!”

I have never shaken my fist at God before, but that day I did. If ever there was a time for the clouds to separate and Him to speak that would have been it. But he didn’t.

An RCMP approached me. “Does she have a red jacket?” “Red, no…I don’t think so” Speaking on his mic then looking at me” does she have colored hair?“ “Yes! Yes she does” “We have her” Thank God. Thank God. Where is she? Where is my son? Where is she? Thank God. The RCMP secured her in their vehicle. No fight, no running, nothing dramatic. They’re a good at this, you see, they understand the fear for the victim just as much as they understand the family’s anguish at the situation. Have you ever been at ACH and seen police officers there? This is why. It’s not safe at that point for you to just take your child home or drive them to the hospital. We can’t know the fear that runs through their minds at that moment, so as much as you want to throw your arms around your child and tell them how much you love them, you don’t get to. She was taken back to a safe environment. By herself. With the RCMP.

“We found her”

“Where was she?”

“Where we thought”

“She’s safe now”

“Yes, for now. She’s safe”

Unfortunately we can’t always be the super hero parents we want to be. I still wear my pretend cape but it feels pretty thin and shabby sometimes. Just because you are going through this doesn’t mean you have failed. You are fighting, helping steer a boat you can’t really control. When they’re babies you can hold them, pick them up, make everything right. When adolescence hits you just long for those snuggle up days again, but things change.

Read the safety plan. If you feel unsure about any of it, change it so you both agree. Call the police or RCMP. They are there to help you. I thought I would be grilled with accusations, but instead they asked me if I was ok, if they could help more, and gave me numbers of people to call if I needed to talk.

The events of that day were caused by a few simple decisions gone bad. Had I argued my point on the safety plan it might not have happened. What started as a simple effort to clear away anxiety could have ended up……..well, I’m not going to go there.  The water didn’t win that day.   She’s safe. We’re all safe . New safety plan. That time we went big. Hopefully soon it will be home.

Get help. Don’t be afraid. Reach out.

I’m Not Hungry

Summer 2013.  As I remember it, things seemed pretty normal, or at least as normal as they can be in a house with 3 kids, 2 birds, 2 bunnies, and one parent trying to watch over it all.  My daughter decided she wanted to try being a vegetarian for a month – just to see if she could do it.  I was game – why not?  Meatless Monday seemed easy, just figure out a different protein source.  The month went by quickly, and she was very proud of herself for completing it,  but little did I know that this was the start of a slippery downward slope.

How do you know if your child has an eating disorder?  How do you even know what an eating disorder is?  That’s when you eat and then throw up right?  Well, I’ve learned that’s not necessarily so.  There are 3 different types of eating disorders: anorexia, bulimia, and eating disorder otherwise defined.  You can also add on to it a binge/purge cycle, that can or cannot be a regular occurrence.  If your child won’t eat their lunch, do they have an eating disorder?Maybe – and maybe not.  Here is what I know – and what I’ve learned.

Puberty is a crucial time.  Hormones start going wild, bodies start changing, and the whole thing just gets messy and confusing.  When your child starts cutting the food they eat in half, they start depriving themselves of super important nutrients necessary to keep their brains working and body growing properly. Of course, it never helps when media is pummeling our children every day with images of what is good looking, and what isn’t.  I never even heard the phrase “thigh gap” until the head of a popular clothing company said girls who don’t have one shouldn’t wear his stuff.  How many of our daughters do you think googled those words to see what it meant?

Once they get used to eating half their meals, the amounts start getting lower.  Sure, the family goes out for something great and they eat in front of you, but the rest of the day they compensate for extra calories they may eat.  Then a friend says something simple, like, “I wouldn’t tell you this, but I’m your friend, so, you’re not nearly as athletic, or pretty or skinny, or built as me.  People might think you’re fat.”  I never knew it, but when I heard my daughter talking to the therapist about how her “friend at school” told her this every single day since grade 4, it was all I could do but burst in to tears.  3 years of hearing it every day – no wonder………….

Anyways, so your child has an eating disorder – so does mine.  Here is what you should do, and what happens next.  Check for signs around the house.  Do you have a scale?  if so, where is it and why are your kids using it?  Who packs your child’s lunch?  Are they really taking one to school?  Where do you eat your meals.  If you’re allowing them to eat in their rooms, how do you know they’re really eating ?  Have you noticed a sudden change in the clothes your child is wearing, like a sudden switch from leggings and tight tshirts to sweats and baggy hododies.  Is your child pooping every day – this is important to ask.  Yes, it’s kind of gross, but it’s a pretty important body function.  Chronic constipation is a clear sign.  Bowels don’t work properly without enough water or food.  When I started noticing all of these things, it was already too late.  Damage had been done.

When food is deprived, the body can only take it for so long.  Depression starts to set in, anxiety happens, and the vicious cycle begins.  As malnutrition starts to happen, bruising starts to appear.  I didn’t know that multiple bruises are a sign of malnutrition!

Take your child to the Dr.  Call right away and get them in as soon as possible.  Insist on staying in the room until you can voice your concerns.  It’s very important for your child to see you there, and for you to say your fear in front of them.  It’s real – very real, and they need to know.  Once you discuss with your Dr., they will hopefully put a referral in to the eating disorder clinic.  The waiting list is horrible – about 6 months, but get it started right away.  Make a plan to visit your Dr. weekly to monitor things while you wait.  You need to know that an eating order is not about food, it’s about control, and pain, and depression, and low self image………..It’s very complicated and very complex.

Once you get in to the top of the waiting list, you will get invited to an information session at the Richmond centre where they’ll go through an hour long presentation.  Very dry, but also informative – and yes, parents and patients should attend.  At any point in the process, if you don’t attend an appointment you will not be considered for the program.  Don’t miss. By this time, your child has been through a ton of blood tests and questionnaires, so information is sent out and Dr’s are notified of results.   Next, based on the severity of your referral, you get set up with 4 different appointments:  Meeting with a Dr. at the eating disorder clinic at ACH – you will have to wait in the waiting room while they talk with your child for about 90 minutes – I’ve learned to crochet.  The nurse will ask you to sign forms, talk a little bit, and then you play the waiting game.  At the end of the appointment you will meet with the Dr. and your child and get a summary.  Next, on a different date, you get a 90 minute appointment with a nutritional dietician that will ask your child a ton of questions about how they got where they are now.  I will warn you – wear your big girl panties for this appointment.  You will need to bite your tongue harder than you ever have in your life.  Your child didn’t end up 25 lbs underweight by accident.  You will learn how calculating and planned they can actually be.  At one point, I thought I was going to explode.  I was so angry – not sure if I’ve ever been that angry before.  Once that is done,  you will meet with a Psychiatrist that specializes in eating disorders.  You don’t get to be in this appointment either – more crocheting.  At the end, you’re invited in to say a few things, voice concerns, and then it’s done.  You get another follow up with the Dr. where you sit in the waiting room for 30 minutes, and then last you meet with a family counselor back at the Richmond Center.  Both parents are supposed to be at this appointment, and their are a lot of hard questions, so put your feelings aside and just be straight with the situation.

Once all of the appointments are done, you are given a follow up date where medical and treatment decisions have to be made.  That was a very long week.  I ended up at that meeting alone.  The X didn’t show – didn’t want to take time off work, so I went and heard the prognosis by myself – that was very hard.  Bringing outside support really isn’t an option, so I’d suggest if you’re in that lone boat, to have some support set up directly after – it’s pretty emotional.

Here’s a terrifying stat.  Out of the children that die from eating disorders, 50% of them commit suicide.  It was explained to me like this.  Imagine a tree – we’ll call that tree depression.  Each branch is an issue – so just pick one and assign a name.  If the eating disorder, in this case anorexia with binge/purge cycle is a branch, and we treat that branch, we are still left with a whole untreated tree.  I was given a choice – treat the branch, but risk loosing the tree – OR – treat the tree, and learn to cope with a sickly branch.  A recommendation was made by them, and I chose to deal with the tree.  The good thing is that once you’ve made it this far, you have 6 months to reconsider and treat the branch without going through the whole process again.  After that – you start from scratch.

Eating disorders aren’t about food.  They cause anxiety, depression, malnutrition, low self body image, physical pain, and are very hard to understand.  All of these things fit under the mental health umbrella.  Do some research.  Watch your kids or your friends.  Get help.

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