Friends, Please Promise to Keep Venting to me and I Promise to Keep Practicing Perspective





This is a big one for me.  It weighs on my mind, a lot. At least once a week a friend, family member, or acquaintance will start airing frustrations to me about their kids and life and then catch themselves. I can hear them silently mentally scold themselves and then apologize to me for complaining about such insignificant things when I’ve been through so much heavier stuff. I want to be clear on this. Parenting is hard. Adulting in general is hard. Sometimes it’s really hard and borderline sucks. And that’s true for “parents who have been through stuff” and for parents who have “typical” situations (I use that world loosely as nothing is typical in parenting). Yes, we have been through a lot as a family. I have two kids with different special needs who both trade off being more or less functional depending on the day. I could write a few paragraphs about some of the stuff we deal with, but I’m not going to, because I’m not trying to win any “look how hard I have it” awards. The majority of the people around us know, to a lesser or greater extent, of the struggles we face and I’m writing this for those people.

I never want you to stop telling me your things…your parenting struggles…your life struggles…all of the things.

I like to think of how I handle situations in terms of how I would expect my kids to, since we generally hold our kids to higher expectations than we hold ourselves. I would never want either of my kids to get so wrapped up in self pity and tunnel visioning their own problems that they lose the ability to acknowledge others feelings and listen compassionately to a friend needing a good vent, regardless of if that vent is something small or big. If I ever heard my kid reply with “Well I’ve been through worse” I would resign myself to parenting failure status.

So how do I reinforce that expectation within myself?
I am trying to avoid at all costs the sometimes crisis-triggered self-centeredness that I feel lurking at the back of my mind trying to convince me to get caught up in my own problems and only my own problems. Over the last 9 years of my rocky parenting journey I have worked on containing and burying that tendency in various different ways until finally figuring out what works best for me. I keep it at bay by actively practicing perspective every day. Perspective is a funny thing. It keeps you in check. It keeps you grateful. Practicing perspective forces you to practice gratitude, which is the next piece of armour against self pity. Instead of starting my day with the negative perspective of how little sleep I got or how often either or both kid was up and how wrong all of the things were going for me, I’ve started writing down 5 reasons why I’m lucky that morning. There are always things to be grateful for, even if they’re as small as “I got to sleep in five minutes today,” or “my kiddo calmed down out of a meltdown ten minutes faster this morning compared to last week.” When I tell myself that, instead of “oh my gosh this happens every morning I can’t handle this why can’t things just be easy,” I force myself to acknowledge that it’s not all bad, and that yeah that morning may have sucked, but it was slightly better than before! It’s amazing what just switching a few paragraphs and thought patterns can do. Our perspective shapes us, and I refuse to wallow in the negativity of how hard and unfair life can be (because guess what, then my kids wallow too! monkey see, monkey do.)

The next important piece of perspective practicing for me is acknowledging how other’s perspectives are not my own. My tolerance threshold for parenting mishaps is admittedly on the higher end, but that doesn’t mean that you cannot become equally as frustrated with your kids as I can in an equally valid way. My husband’s perspective is not the same as mine even though we’ve been through the exact same thing. I am not holding the “Look at all of this shit I’ve been through with my kids” trophy. When you apologize to me and think your stuff pales in comparison, you’re passing me that trophy, and I frankly don’t want to carry it. You remind me of that little voice of selfishness at the back of my mind that keeps trying to convince me to have a pity party that I’ve built up this perspective and gratitude defense against because I don’t have any interest in being invited to that party. I am not a victim of my parenting or life situation, there is nothing else I’d rather be doing, even on the hard days… so please don’t treat me like my experiences are something to hold high as a beacon of strength when I’m doing the exact same thing you are with just a different perspective of it. I’m not mourning my parenting path, I’m always either celebrating or learning, and I’m happy to be here doing it regardless of how much I might jokingly complain. So tell me about all of the things going on for you. If you are venting to me, I clearly care about you. I care about how you feel. My struggles have not stripped my compassion, they have strengthened it. If they are not small things to you, they are not small things to me. When you are telling me your struggles I am not mentally ticking boxes off in my head of why I’m struggling more. As special needs parents (and just as people too!) we need to remember to keep our perspective. As soon as our perspective leaves, so do our people. When we stop showing up for our important ones with open eyes to their issues and only eyeball our own, they leave. When we compete with them and make them unheard and build up our issues into giant, heavy mountains (that not only weigh us down but everyone else around us too) instead of practicing perspective and gratitude, they leave. If you’re both sitting at a table that is so full of your own shit that none of theirs can fit, they will get up and leave that table. And you can’t blame them for doing so. I promise that I will not lose perspective and will keep showing up for my people regardless of what I have going on, because in reality, sometimes we are all just tired, frustrated parents and people going through the same stuff in one form or another, so please don’t ever stop venting to me.


I Shouldn’t Have to Do This, but I Do it Anyways-Why Special Needs Parenting Will be the Hardest Job I ever Have.


As I’ve been learning with mental illness, the crisis never really passes. It’s a fluctuating, living, breathing entity that waits in the shadows and teases you with just enough good days to give you hope, and then it knocks you back down with a very rough week. The worst thing about mental illness is that it likes to play games. You get that short glimpse of Dr. Jekyll, the kid that can be successful at school until noon, that is happy and loves to be hugged, only to have a quick descent back to Mr. Hyde, preceded by 5 nights of not sleeping. How a young child can go that long without sleep is so beyond anything I can fathom. It’s not that she’s choosing to not sleep, it is very clearly a physiological inability. She screams at me all night long to give her something to make her go to sleep….I can’t, she’s maxed out on meds. The Trazodone that was overly sedating the previous week is no longer touching her. If I took as many extended release melatonin tabs as she does, I’d be sleeping for at least 72 hours straight.

There have been many times this past week when I think to myself, “I shouldn’t have to do this, this isn’t fair, this is not the way parenting should be.” When I was pregnant, I didn’t imagine this as the outcome. I imagined this perfect little person that I would be best friends with, we’d immediately connect, laugh together over hot chocolate, cuddle all of the time. We’d be just like what you see on TV…we’d be like Lorelei and Rory from Gilmore girls, or Julie and Susan from Desperate Housewives. Our personalities would always mesh and we’d never fight, best friends forever. There would be none of this second-guessing or crying, I’d never need a break because we would always be happy, right?

My personality is very much so the head strong, let’s get this done, we know the problem now, what steps do we take to fix it. If someone asked me to describe myself in two words, I’d use proactive and efficient. What does a person with my personality do when something cannot be fixed? you begin to grieve.

Since the diagnosis I have realized that I have finally started the grieving process. No, no one has died, and no it’s not comparable….but the way I imagined my life should be has passed away, and it isn’t coming back. Every day I’m reminded of this in one way or another, and with this grieving process, the “I shouldn’t have to be doing this” has popped up from out of nowhere. This weekend I watched a family at a local Christmas shopping event while they interacted with each other. Standing quietly and happily, the young daughter kept looking at her mother, smiling, and telling her that she loved her. Their relationship seemed so perfect in the short snapshot that I saw. They were holding hands, and the mom kept leaning over to hug her, to display her affection to a child that she clearly loved a lot. I couldn’t help my overwhelming jealousy. That is what I had wanted….and then sadness with a twinge of hopelessness when I realized that that will never be me, I will never be that mom, and that will never be my daughter. S wasn’t able to come shopping because she had only slept 2 hours the previous night and had already attempted to hurt herself several times that morning. I had already coordinated the emergency plan with family and friends in the event that we needed to bring her to emerg.  I will never get to experience the normalcy of that family, and in essence, that is what I have been grieving over. I felt that sinking feeling when negativity drapes over you and weighs you down. I started to fixate on all of these things that I shouldn’t have to do.
-I shouldn’t have to hide all of the knives in my house because I’m worried about my 7 year old who keeps talking about cutting herself.
-I shouldn’t have to spend countless hours in therapy every week, for both myself and for S.

-I shouldn’t have to learn proper restraint techniques for the next time she becomes violent.
– I definitely shouldn’t have to be called a “f*ckhead” on an almost daily basis (seriously though, where did she even learn that!?)
-I shouldn’t have to pick my grade 2’er up between 10-11 every morning from school.

Yep, I shouldn’t have to, but I do have to. I cannot fix this. I try to say to myself frequently, almost like my special needs parenting mantra, “suck it up and do it.” I get so consumed with these thoughts and dreams of how things should’ve gone that I am missing the real moments in front of me. Those real moments suck a lot of times…but sometimes they don’t, sometimes they’re imperfectly beautiful if I look hard enough at the situation.

Special needs parenting is one of the hardest jobs I’ll ever have to do because of the selflessness that comes with “sucking it up and doing it.” If this was a typical job that I was hired for, I would’ve quit long ago. The hours are too long, there aren’t enough breaks, it’s too stressful, definitely unsafe working conditions, the boss frequently swears and rarely shows her appreciation of my hard work, and to be honest, she also can be a bit of an a-hole at times.  Don’t get me wrong, I love my daughter…sometimes I don’t love the situation. But we can’t quit, that’s not an option. We show up every day, forcing a smile even on the worst days. I put on my swimsuit and goggles and ride the bipolar wave regardless of how I am feeling that day.

The other day S was having a mood episode and was throwing chairs at me and repeatedly called me the B-word. While frantically trying to hostage negotiate her little sister out of the rage circle, I kept thinking about how all I wanted to do was scream. To yell. To run away (but come back to make dinner of course). To sit down and bawl and throw in the towel…And I didn’t…because instead of verbally telling her that I love her, staying and weathering the storm is how I show her I love her.

When people joke about not messing around with special needs parents, they’re actually not really joking. We are badass warriors, therapists, crisis managers, routine organizers…we see some stuff that makes most people feel uncomfortable, then we laugh and joke about it like it’s no big deal, like it’s just another day, and we do this daily because of love. The love and work I put into S and my relationship does not show the same way that that family at the shopping party’s love does. You can’t see it, but it’s there. We don’t hold hands and she rarely tells me she loves me, but it’s there. I wouldn’t be showing up every day if it wasn’t there. My imperfect family does not make me any less of a mother than that mother is. I try to remind myself of the things I should do, the things I need to do:
– I should be laughing a lot; being called a f*ckhead is actually sort of funny when you think about it.
-I should not be comparing my life and my ability to love to others, because they will never be comparable.
-I should cut myself some slack and take breaks when I need it.
-I should know by now that perfect doesn’t always equal better.

Parenting has never been about doing what you want, it’s always been about doing what is needed, and that is particularly true of special needs parenting. As a special needs parent, you will keep doing a bunch of things no one should have to do that are done out of dedication and a hope that one day maybe you won’t have to do it anymore because you worked hard, you loved harder, you rolled with the punches, you adjusted your expectations, you did a lot of yoga, you ate an entire box of turtles, you cried and came to terms with the fact that this is how your life is and regardless of the situation, you will keep showing up to work

The Day Before Discharge

imageThe day has finally arrived! Sage is being discharged from the hospital tomorrow at noon. With the recent change of seasons it makes it feel like we’ve been here much longer than we actually have…but I was ready to leave and was feeling very done about two weeks ago. Both of us are going through complicated and confusing emotions with the upcoming discharge; while we are both excited to go home, we’ve gotten used to the routine at the unit and both enjoy most of the staff that we’ve seen on a daily basis. Several of them I call my friends now and have been with us through the really hard times so it’s difficult to not be a little sad at saying goodbye to people who have been privy to this emotionally charged part of our journey. I am a creature of habit as much as S is (she got it from her mama) and transitions are hard for both of us. This is a necessary transition. We cannot be here forever, and we are starting to see more behavioural outbursts from s on the unit rather than disorder based outbursts, which her very in tune psychiatrist can recognize as different. Kids aren’t meant to be in hospital for such an extended period, they begin to have an “institutionalized syndrome”….they start playing the part. We’re dancing on that line with s, which is why her doctor bumped the discharge date to a bit earlier. A new group of kids (the third cycle now) have arrived at the unit and she is no longer the most troubled kid here as she was for such a long period of time. Each day the lithium stabilizes her a bit more. Her reasoning, concentration and impulse control are greatly Improved, so much so that her doctor has dropped the ADHD diagnosis and is attributing it all to the bipolar. our discharge teleconference was held today and it was so comforting to hear her doctor tell everyone that she has a definite bipolar diagnosis, a rare diagnosis for one so young, but she is absolutely certain of this diagnosis. Our paediatrician will follow her medications at home and she will start mood therapy. The new school S will be going to has been very accommodating and seem very open and willing to help with her transition and with her unpredictable moods. She gets to start school on Monday! Our first discharge teleconference we had before she was triggered into mania seemed so much less certain, without such a solid care plan going forward. So much has changed since then. This time we feel completely prepared for discharge and for the help we will continue to receive. As hard so everything has been here, it was a blessing in disguise that everything happened as it did. The psychiatrist was able to see enough to diagnose her mood disorder after she became manic. We were able to see her at her very worst so that now we know what mania looks like, and the appropriate coping mechanisms. We have an explanation and some validation as to what she’s always been going through….an extended period of unstabilized mania and hypomania for her entire past 6 years of life. I felt like a weight had been lifted from my shoulders leaving the discharge meeting. We have a diagnosis, a plan going forward, support at school and with therapy, and a lot more knowledge and understanding of the mental illness s has been struggling with for so long. The team here is collaborating a case study based on sage’s experience that will document her adverse reactions to seroquel and guanfascine in an attempt to help future pharmacists and practitioners to understand the complexity of treating childhood bipolar disorder. There isn’t much info out there on how these drugs interact with lithium and with youngsters with this disorder, so this information will help prevent future episodes had by other bipolar children. That in itself makes everything we’ve gone through seem worth it, even if it helps one other child with a mental illness.  S is still struggling and in a state of stabilizing, but we are leaving better off than when we were admitted.  She is still rapid cycling with irritability and hypomania throughout the day, but it lessens each day. We expect it to be a difficult transition home and her and I both will need time to readjust to the real world, instead of the bubble we’ve been in here at the hospital. Anything stressful can trigger a mood episode so going forward we need to be careful and control her environment with predicability and routine. There is a high chance she will need to be hospitalized again But I’m choosing to not think about that right now. Bipolar disorder forces me to live in the moment, and everyone needs to do a bit more of that anyways. It’s not perfect, but we don’t expect perfect or “normal” from her because that is just not within her abilities. Perfect and normal are boring anyways 😉

It’s All Okay

imageThis morning it hit me hard; has bipolar disorder. And if I said it made me feel an equal mixture of sadness and relief, you would probably think I was into the wine again. Nobody wants a mental illness diagnosis, right?

Today I received the stack of bipolar parenting guides that were recommended by her psychiatrist and the support group. Ever since S was little and struggling I have repeatedly said, “I don’t think this is normal behaviour? What is going on? I just want a book to tell me how to parent her.” The having a book requires having a diagnosis. After trying so many different avenues to receive a diagnosis, everyone just started telling me that a diagnosis wasn’t that big of a deal….she is who she is and you are managing…just love her a lot and have patience and she will grow out of it. I was even able to convince myself of that…”we’re managing, so it’s okay, right.” What happens when love isn’t enough to help a child? And then things got really bad and we weren’t able to manage anymore, we were in crisis mode. Having a child with special needs forces parents to face many of their own demons. Sometimes I feel like we’re living in this parallel secret universe. The image I so badly want to portray, and how it really is, because I have always really wanted to believe that love was enough to help her. As S’s illness got worse, my anxiety and obsessive compulsive behaviours sky rocketed. If I cannot control my child’s behaviours then I must control everything else in my environment to make up for it. Coming into my house you would never know that I had just had to scrub my walls from all of the food that was thrown or pick up every piece of furniture in the living room because they had all been flipped and thrown due to S’s “big feelings” (that’s what they call them here). You wouldn’t be able to tell that right after that sweet looking family photo posted on Facebook, S took off and it took close to an hour to find her. Nothing is ever as it seems (especially on Facebook). I have close friends that have said they have never seen S behave the way that we’ve described. That’s because I am in constant, anxiety-riddled control of the situation. I watch her like a hawk. I am never “at ease.” I make an excuse to leave if I see the behavioural warning signs, I don’t accept anyone’s offer to babysit, I push friends and family away when I feel like they’re getting too close to seeing what we actually deal with on a daily basis, because then the anxiety over Maybe being judged would be too much. Deep down I have been terrified of people thinking that her behaviours are a reflection of my parenting…that I’ve failed at the most important job that I’ll ever have, raising functional and happy kids, that somehow her issues are my fault. This is my narcissistic revelation that as much as she needed this diagnosis for her, I needed it for me too. I needed to see it as something out of her control and out of my control. It shouldn’t make a difference, but it does. I can finally let myself off the hook. It’s not anyone’s fault that she’s bipolar. It wasn’t because I didn’t try hard enough or didn’t love her enough. It wasn’t because of the PPD I had the year after she was born. It wasn’t the times I got angry at her and yelled or that maybe I didn’t breastfeed long enough or that I’ve been feeding her the wrong things. She would have a mental illness regardless of all of that. I can stop taking responsibility for the behaviours related to her Illness and accept them for what they are…the roller coaster life that she will always have. I can stop feeling embarrassed in public when she has a meltdown and I can stop posting only happy photos on Facebook to try to convince everyone that nothing is wrong. As if a light bulb has turned on now that I’ve let go of the guilt, I don’t really care what anyone else thinks, because I know better.

As it turns out, a diagnosis does mean a lot to us. Her psychiatrist has said that we’ve likely saved her life by getting her a diagnosis so young; in a way it has probably saved mine as well. Sitting with these books in my lap on parenting bipolar children symbolizes a very long journey to get to this place, emotionally, mentally and physically. Although I 100% agree that her diagnosis doesn’t define her, it defines the help she needs, and the help that I need. The real S includes her mental illness and it’s okay for people to see that….to see her wonderful, crazy, sad, sometimes scary, happy, loving self, because it’s all okay.

What Mental Illness Isn’t

One step forward, two steps back…that seems to be our mantra. Rather, one step forward, one step back; bipolar disorder limbo. S’s sleep patterns have been erratic this week. She’s been complaining of headaches and back pain since her lumbar puncture procedure. This morning she threw up and is lethargic and irritable. We’ll see how it progresses over the weekend, hoping it’s not some sort of infection. Yesterday her behaviour regressed and she started being aggressive and swearing and self harming; security had to be called in for the first time in close to a week. We just wait and watch, walking on eggshells and praying to not trigger her. Will she slip back into a mania or will the lithium hold it at bay this time? If she slips back we stay longer. You can physically see it trying to take hold. She’s scratching her skin again and her moods are unpredictable and erratic. Her antipsychotic taper started on Wednesday so it’s also a bit of a withdrawal process too, but how she reacts to that is unknown and also a wait and see situation. Monday she will be completely off of the resperidone so that we can see what lithium is doing by itself. At at point we will determine if we need to add another stabilizing medication. Mood therapy started last week and she finally is saying “I have bipolar disorder.” We are trying to remove the connection in her brain between being a bad person and having bipolar disorder, as they are not synonymous, bipolar disorder doesn’t automatically make you bad. Feeling so alone in her struggle and feeling so out of control of her body has left her with little self esteem and feelings of worthlessness. There was a lice scare on the unit this week and while sitting in the bath with her precautionary lice shampoo on she cried ” I have bipolar disorder and bugs in my head, I am the most unlucky kid in the world.” She didn’t end up having lice thank goodness, but it just illustrates how different and “unlucky” she feels.

I had an accidental glimpse of the nurses big whiteboard of stats on S last night and I had a momentary feeling of overwhelming sadness. Ask any special needs parent…..we dislike talking about or seeing in writing what our kid struggles with. Talking about these struggles is almost a daily occurrence. It’s not that we are in denial, we are fully aware of how our kids compare to other “neurotypical” kids. Sometimes it’s painful hearing about our friends’ kids accomplishments and strengths because it reinforces how different and behind our kids are (then we quickly remind ourselves that those are our issues and we need to be happy and supportive of our friends too). Having to fill people in on these struggles becomes cumbersome after a while. IEP meetings, teacher meetings, school transitions, sports, play dates at the park., therapists, counsellors. Talkng over and over again about what our kids are not good at is just a special needs parenting reality. It comes with the territory. It makes it too easy to get caught up in the comparison to “normal” kids. We talk about the issues so much that they can sometimes seem like the most important thing (especially here when we’re in psychosis crisis mode and each day is determined by how severe her behaviours were). It’s so easy to forget that these kids are more than their struggles and special needs. I felt this same overwhelming “my kid has so many issues” dark tunnel feeling when I looked at that whiteboard last night.

S: age 6. Disruptive behavioural disorder, anxiety, bipolar disorder. Self harm, aggression towards staff, extreme awol risk, sleep regulation issues, suicidal ideation.

This is now a reminder to myself just as much as it is a teaching tool for others that that whiteboard is what s struggles with, it is not what s is. She has a mental illness, she isn’t a mental illness. On these rough days when I need to hear about the good things, I will read this.

Her mental illness isn’t her big belly laughs when she thinks something is hilarious.

Her mental illness isn’t the sparkle in her eyes when she tells me an exciting part of her day.

Her mental illness isn’t how she rubbed another patients back a few days ago and told him he was doing a great job.

Her mental illness isn’t her pure joy of swimming in a lake for 8 straight hours.

Her mental illness isn’t the big hugs she gives me or when she tells me she loves me.

Her mental illness isn’t her love of soccer, dance and skiing.

Her mental illness isn’t the beautiful and creative drawings she gives to me as gifts.

Her mental illness isn’t the love and devotion she has for her friends.

That white board isn’t s. That whiteboard is her mental illnes and she isn’t her mental Illness, she is so much more, you just need to be patient and look a little harder. That is what us special needs parents want to scream at every meeting, at the park, to all of the specialists, SHE IS SO MUCH MORE! She is so much more than her struggles and her behaviours related to her bipolar disorder, just give her a chance to show you.


Seroquel Bad!

We have finally figured out why S was in an unusually long manic episode for a child. The seroquel. As of today it is out of her system. Seroquel (quetiapine) is a second gen antipsychotic usually indicated in kids and adults with bipolar mania to help lessen the aggressiveness and agitation. It is frequently used in combination with a mood stabilizer like lithium. The thing about a lot of these meds I’m finding out as we go is that with many of them they don’t know exactly the mechanism behind why they work. They just seem to work in most people. But in a small percent of people, they actually do the opposite of what they’re supposed to. What we have also learnt that if there’s a chance, even a small chance that S will react badly to something, it’s probably going to happen. At this point the lithium is now at therapeutic levels in her blood and should be working to pull her out of the mania. But not when seroquel is being an a-hole and keeping her in the mania and trumping the lithium. We have seen slow, small blips of improvement this week. Our psychiatrist told us not to expect too much too soon, it will be a subtle shift over the next few weeks. The meltdowns and aggression is still happening,  but in lesser intensity and duration. She hasn’t sworn since Thursday morning! She was finally able to sit down with her doctor to do a short session of mood therapy, which she actually retained. “This is the front brain, my thinking brain. This is my balloon. (The amygdala) when I am happy and feeling good it is small. When my brains chemicals get confused and blow the balloon up, It gets full of angry thoughts and my thinking brain gets cut off and I do things I wouldn’t do if thinking brain was in control.” She gets it. A negative reaction to seroquel was keeping the balloon big and not allowing lithium to come in and deflate the balloon. Lithium will now slowly deflate the balloon and keep it deflated. If she’s triggered into a mania in the future, the balloon should never get that big again and shouldn’t stay blown up as long because of lithium.

Neurology is going ahead anyways. They think they should’ve been called in to her “complex case” sooner. (Complex case=code for we’ve never seen this before). A bipolar diagnosis in one so young is rare and controversial. They feel compelled to check for other causes. Our psych doesn’t think they will find anything, but it will strengthen the diagnosis. When nothing else is left to explain it, bipolar it is. Tuesday she is scheduled for an MRI and lumbar puncture under general anesthetic to check for brain inflammation and rare autoimmune disorders that would be treatable.

Last week I was chatting with another mom whose son is admitted to the unit and he is leaving with an autism diagnosis. She was telling me how when they first came she was so worried that it was something that was really bad, like bipolar disorder, and so relieved that it wasn’t. Not that they are the same, but some general similarities can be made. In my opinion neither disorder is “worse” than the other, It’s all about perspective. My very difficult days could be a walk in the park to an autism parent. Both have spectrums, each child is completely unique in their disorder. Each have strengths and struggles, each will have strengths and struggles lifelong. Why is bipolar disorder considered the “really bad” one!? I think maybe because it is so rare and not seen as often. Maybe because we’re not as familiar with it, it is “really bad?” Unknown=scary=really bad.  (And yes when that mom asked what sage had been diagnosed with after telling me about her son she was so embarrassed and apologized profusely haha)

I think the more light we can shed on this illness, the less scary it will become, even if it’s just to my circle of friends. That’s a few more people that don’t think it’s something “really bad.”