Originally written: December 12, 2019
Mental Health Crisis
I first started writing this post back in October. At that time, it was roughly a month since I last blogged. Procrastination continued and it became 2 months, then 3. Honestly, I just didn’t feel like posting or sharing my thoughts and feelings. Any creativity, humor or zest just wasn’t in the realm of possible. Maybe this was what writers block felt like. My daily family life was just about all I could manage…. We lost a friend in September.
My friends passing took an entire community by surprise and left a devastating mark on all our worlds. Mental illness struggles and addiction problems took its toll on my beautiful friends’ soul. We were left questioning ourselves, doubting our ability to notice when others are struggling, wondering what we could have done differently, or better. Did the system fail her? Personally, I was overcome with the what if’s? the how’s? and the why’s? I felt helpless and heartbroken. With all of this said, I pray my friend rests in a painless, more peaceful place.
Following her passing, I worked very hard to tuck away any pain of the loss in a safe place. I needed to continue. Life goes on, my chaotic, crazy life of lunch making, work, school drop off & pick up along with all the activities and errands in between resume. Life easily consumed me. Maybe intentionally.
It was on a recent vacation, when I had nowhere to be, no one to care for and nothing to preoccupy my thoughts that my friend returned. She visited me in a dream. I believe she wanted me to know she was ok. She looked beautiful, at ease and she helped me calm down with her reassuring smile. However, when I woke to the realization that it was just a dream the hurt started all over again. I wish I could go back to the last time she called me. I wouldn’t have cut our chat short and I’d strongly influence her to feel good and be strong. I’d convince her to stay. But, it’s too late now and there’s nothing I can do but carry on.
Mental Illness is something that has both affected me and many members of my family. Whether it be anxiety, OCD, or dealing with the depths of despair through depression, I have a great understanding for these debilitating mental illnesses.
I mostly live a rather blessed life however, nothing prepared me for the pain I’d experience witnessing my own children struggle. It’s been at these darkest times that I along with them have felt completely alone and helpless. Autism and mental health issues seem to go hand in hand. Like life hadn’t challenged my family enough with understanding and handling a neurological disorder like autism, they’re also going throw in heightened anxiety, a lack of coping skills and an insane level for the need of routine and structure in a world you cannot control. Life is always changing and to some this can be extremely difficult. When all we want to do is blend in, Autism is going to ensure that you must struggle to do so. You’ll have to work so hard to mimic and act appropriately- simply to be socially acceptable- typical as society calls it. All of this can be mentally and physically draining and painful, which in turn can cause several negative behaviours and obstacles. No one will witness these behaiours more than immediate family or caregivers.
At age 9 my daughter wanted to die. Life was hell, she was in chronic pain, she hated herself, living was just too difficult. She so badly wanted to live carefree like everyone else (her perception of others). On multiple occasions she begged me to put her out of her misery and help her die. I was devastated, heartbroken and sickened by her words, I had no idea what to do. As her parents, did we do something wrong?
All I ever wanted was to be a mom. My career goals were always bleak, but I knew I wanted to have a family. Nothing prepared me for this. This wasn’t what I had envisioned, I had never heard of a 9-year-old struggling with mental illness and so badly wanting to leave this world. As my daughter’s anxiety skyrocketed, it began to affect her daily life and the whole family’s livelihood.
We ended up exploring meds for the first time. My daughter was a selective mute until grade 2 and it was apparent from a young age that she struggled with social anxiety. At age 5, it was suggested that we try some medication to ease her anxiety but we just weren’t ready to dabble in the land of brain medication yet. She was so little, developing daily, and we hoped she would outgrow the anxiety that was beginning to rule her life.
It was at age 9, when we decided to trust the doctors/specialists to guide us through the medication process in hopes of helping her function a little easier and focus on just being a child. We wanted to help fulfill her desire to be a little more carefree. Looking back, what we began was a nightmare. A nightmare that I’ll never be able to erase. It all started with a simple anti-anxiety/ depression medication. It took 3 tries before we found one that mildly helped for a short while. She ended up to being on 5 different medications to somber the side effects of the medication before. My 9-year-old, beautiful daughter ended up on an anti- psychotic medication due to extreme behaviours (naively, later realizing it was caused by an adverse reaction to the anti-anxiety drug number 3). We were instructed to give her up to five sedatives at a time to calm the anti-psychotic side effects (she too experienced an adverse effect to these and could be alert, frustrated and aggressive for 8+ hours.) Note, 1 Ativan is generally enough to knock an adult out. You would think 5 would put her in a coma.
The doctors then added an ADHD medication. This medication made her super hyper, it made her heart race and she’d sweat so much to the point of being drenched. To soothe the side effects of the ADHD medication, they then added an ADHD calmer drug. Perhaps taking her off the ADHD medication would have been the better solution.
Through this medicating craziness I lost my daughter. She was visibly there but no longer my charming, loving, beautiful child. She resembled a very angry zombie, or something even scarier. Her pupils dilated to the point that the whites of her eyes were solid black, she spoke the foulest language, she constantly harmed herself and frequently physically attacked us. Who ever thought the medical system would inflict such trauma on a 9-year-old child? The hate and angst in her eyes scared me to death. Unaware and unwise of the consequences to her actions she tried to jump out of the car while driving on the highway, she attempted to jump off the railing down a flight of stairs, and on numerous occasions she tried to smash open windows to jump out of them. She also tried running away multiple times barefooted and in the dark. She so badly wanted to run away from herself, from the way the meds made her feel and away from her loved ones who were putting her through this. We were told that we needed to restrain her if necessary, and well, doing so truly broke all our hearts. This is my baby! My beautiful child! Where did she go? Friday became our least favorite day of the week. It was the day after a long week of trying to function, of going to school and keeping up with dance that she would crash. It became Friday night with police visits and ambulance rides to the local hospital.
We lived in a rural community that simply didn’t have the proper mental illness resources. Those that existed are sparse and getting into them or in a timely manner seemed impossible. In extremely, desperate situations there is nowhere to go. We witnessed an increase in suicides in each of our 8 years there. We would turn to our local hospital in the next town over which simply resulted in more sedatives (again, she would have the adverse effect) and regardless she would be sent home. Doctors denied her help because there was no help available (admitted by many physicians during this ordeal). They were baffled with our struggles and didn’t witness the seriousness of what we were dealing with.
Trying to get her into the children’s hospital five hours away, resulted in nothing more than a couple of conference calls with us begging for help. The Child Psychiatric Unit had a huge waiting list, and there was nothing that could be done immediately. It didn’t matter how desperate the situation became we were left to figure it out on our own. My daughter was denied from the local Child and Youth Mental Health Services twice, because she is on the ‘Autism Spectrum.’ The fact that she wanted to die wasn’t’ enough to get her help. She was suicidal, not ok and in desperate need of help.
After many attempts we finally got her admitted into a larger hospital 45 minutes away. They provided us with a weekend of respite. A babysitting service, nothing more. It was her uncontrollable behavior at the hospital that brought us publicly to tears and hysterics that was finally enough to convince them of admitting her for the weekend. She landed in the pediatric wing as there was nowhere else to go. There was no psychiatric support for a child that young and no doctors care beyond ensuring that she caused no harm to herself or others. They basically observed her behaviour. She stayed in a guarded room for the weekend unable to socialize with any other children on the floor. Not once was she treated like she had an illness. Instead, she was treated like a ‘bad kid.’ It was as if the place she was locked in mentally was her fault. She was treated like a prisoner at the hospital. It absolutely broke me. This whole experience did.
It was during a 2nd stay at the hospital (which again happened in a desperate time of need for some respite) when she looked at my husband and I, so young, scared, naïve and angry and yelled, ‘Get me off of these fucking medications’. Keep in mind she never swore prior to the meds. It was here that she begged us and was 100% convinced that it was the meds that were making her act and feel crazy. Something clicked with my husband and myself. The doctors whom we trusted to help her with her social anxiety had taken advantage of our daughter. They created an ‘autistic guinea pig’ to test medications on. Instead of taking her off that first drug they just kept treating the negative drug side effects with another medication. It destroyed her, our livelihood, and all our hopes and our dreams for her at the time. My husband, son and I were all at our breaking points and now mentally struggling just to get through each day. This experience was nothing I’d ever wish on another. It was horrific, absolutely devastating and beyond lonely.
During our teleconference conversations with Children’s Hospital we spoke with a pediatric psychiatrist and neuropsychiatrist . 2 specific discussions struck me as completely disheartening. The 1st was that they admitted to not knowing how to treat an autistic brain (generally it was by trial and error) and the 2nd one was that we should consider putting our daughter in Foster Care. They actually threatened her with Foster Care as punishment for her bad behavior. Her behaviour was now her fault. Here’s the thing, my daughter and her health mean everything to us. When we say she is not herself, believe us! Medications that can have adverse effects should not be dealt so freely, especially to children. This is my baby girl, I’m not wanting or asking to get rid of her, I want to help her. This upset me more than I can ever express. Plus, I can’t eloquently, so I best take the high road. I just desperately wanted my daughter back.
So, we listened to my daughter and not the specialists who we had trusted for so long. We followed their expertise and they were wrong. We weaned her off every single medication on our own, in our home. Slowly but surely, I started to feel my daughters return. 2 months went by and the time on those meds became just a blur to my daughter. Thankfully, she doesn’t remember that time, or the people involved in her care because she was so out of it. We’ve since allowed and encouraged her to regard it as a very bad experience. It was never her fault along with all the problems that came with it. It was our fault and the fault of the doctors who we trusted to take care of her. Her horrible, and some unspeakable behaviours at that time came from something that was not in her control. Being naive young parents and following the recommendations of the experts was not our finest moment. We were scared, desperate, exhausted and completely influenced by those whom we felt knew best. I often wonder how many others out there aren’t being provided with the proper care, proper assessments and were given the wrong medications. How many families have lost a member to the system because their medications worsened the situation? How many gave up on their child? How many weren’t so fortunate and lost a family member or friend to suicide due to a lack of proper care and support?
A few years later my daughter started to sink again into a dark depression. Suffering from serious anxiety and stomach issues she became housebound. We couldn’t get her to get dressed, to brush her hair or come out of bed. She had become a hostage, a hermit so to speak. She dropped all her favorite things including her love for dance, her friendships and any care she had for attending and achieving at school. I had lost my daughter again. It was time for all of us to make a major change. With acknowledgment through experience we knew we were limited to resources in our small community, so it was time to move to a larger city. This was a move we didn’t necessarily want to make but had to. Keep in mind we had to leave everything familiar which, can be a difficult task for a typical brain, let alone an autistic brain that thrives on familiarity. Getting the right support meant making a sacrifice and leaving our beloved community.
For those curious as to how my daughter is today; following our move she had a proper assessment and was put on the right medication (just 1) all while being professionally monitored. Our amazing team of specialists and support workers patiently assisted us all through the recovery. The process wasn’t accomplished overnight, it was tiring, and it took a lot of commitment. I have spent the last year on a mission, advocating for what my children deserve and preparing them for their successful futures. It was all worth it, my daughter is better than ever. Functioning, thriving, contributing and happy is the best way to describe it. Let me remind you she is still a typical teenager with the hormones and emotions to boot. But, she’s back to my straight ‘A’ achiever who hasn’t missed a day of school. Her fashion choices and personal appearance are a priority. She’s back at competitive dance, tapping her little butt off. She’s artistically motivated again, painting, drawing and sewing up a storm. Best of all she has an abundance of friends who she cares about and whom she constantly surrounds herself with. We have witnessed her advocating for herself and we are extremely proud of her determination and perseverance. I’d say she’s living a much more carefree life. She’s no longer willing to miss out on anything. Those dark days of loneliness and medicated psychosis are behind us. I’m sure there will be new obstacles to face, but I feel we have surrounded ourselves with the right people and services to help us tackle whatever may come. The help we so desperately needed is no longer impossible to achieve. I am forever grateful to have my daughter back.
Forward to my dear friend who passed away in September. I miss her dearly. Just losing the comfort of knowing she’s here has left a hole in my heart. This was my first time experiencing the loss of a friend and also my first experience of losing someone close to suicide. Not only was she my friend and a coworker, she was my daughter’s dance teacher. Over the years they got to know each other quite well. They often butted heads but they were more alike than not. Both had beautiful smiles, a sarcastic sense of humor, no filter and a passion for dance. They had struggles that were often parallel. Unfortunately, they both led these struggles secretly behind the scenes.
One thing I will never forget about my friend was the raw advice she provided me with a month prior to her passing. It was one of our many candid, upfront conversations. She told me to stop overcompensating and explaining for my child She stated to me that ‘she is fine, she will be fine and that she admired her.’ ‘How lucky am I to have a daughter who is real, honest and sees so clearly of what is right and what is wrong.’ She said, ‘how nice the world would be if everyone was so honest, so true to themselves and weren’t so influenced by others.’
To my gorgeous friend, I am so sorry you had to leave, I am so sorry you struggled. I hope people realize that we truly don’t know what others are dealing with. I wish everyone to be kind, caring and understanding. No one wants to walk through the depths of despair or walk the walk alone. You had your own struggles, but you always made yourself available to others in times of need and darkness. I want to thank you for that. I also want to apologize for not seeing you more clearly and not reacting to the signs of despair that I, and so many missed. I also want you to know that my daughter is back at dance and loving it. She’d much rather be back dancing with you at your studio, but I do believe her new studio is a good one too! I know this would make you happy. Just like it was for you dance has always been her best therapy.