Suicide Awareness and Prevention

Depression isn't an act. Bipolar aren't phases. Suicide is not a coward's escape. Self-harm isn't a cry for help. PTSD isn't something to snap out of. 

September is an important month for all of us to recognize as it's National Suicide Prevention Month, with Suicide Prevention Week kicking off on Sept. 5th to surround World Suicide Prevention Day on the 10th. Raising awareness about suicide is a first step in starting necessary conversations about this often misunderstood and stigmatized tragedy. Understanding suicide and what precipitates it is essential to prevention. 

Let's talk depression and mental health, the leading causes of suicide. While mental health awareness month isn't until May, this element is an essential part of the suicide conversation. These are topics near to my heart, and since I went public with my own mental health diagnoses, I try to seize every chance I have to bring awareness to these often difficult and misunderstood topics. 

Suicide is the 2nd leading cause of death in the world for people ages 10-34, and the 10th leading cause of death in the U.S.

First, let's establish what depression is. Clinical depression is not simply being sad, and is different than circumstantial sadness or grief. While long-term, chronic sadness is a classic mark of depression and the symptom most often discussed when identifying depression in yourself or someone else, depression goes so much deeper. Depression and other mental health conditions such as Bipolar, Schizophrenia (and many more) are complex and serious, sometimes life-threatening, disorders that negatively impact mood and emotion, mental stability, the way a person feels, thinks, and acts. They can drastically affect a person's daily emotional and physical functionalities.

In 2019, there were an estimated 1.38 million suicide attempts.

Know the facts, not the myths:

• Depression is not mere sadness or a weakness of character.
• Mental health disorders have social, psychological, and biological origins. 
• Sadly, anti-depressants don't simply "cure the problem."
• While treatable, there are many intervention approaches to managing depression and other mental health disorders. Medication helps to alter and balance deeply-rooted biological issues with brain chemistry. However, talk and psychotherapy can be important in treatment approaches, especially when combined with other remediation, such as medication.
• Anti-depressants/anti-psychotics won't change a person's personality. 
• You don't simply "Snap out of it."
• Depression is not a sign of laziness, self-pity, weakness, or drama. One doesn't just power through, and cannot be "cured" with good thoughts or an "attitude adjustment."
• Someone can suffer from mental health disorders despite having a "good" or "comfortable" life.
• Depression can affect anyone. 
• While depression symptoms are most frequently reported by women, data shows that suicide rates in the U.S. are 4x higher in men.
• Depression is not caused by diet. 
• Yes, depression is often exacerbated by excessive amounts of alcohol or the use of drugs.
• Yes, a good diet is helpful in all areas of overall health - physical and mental - but it is not a single underlying cause of clinical depression and other mental health disorders. 

There is one death by suicide every 11 minutes in the U.S.

Passive vs. Active Suicide Ideations:

• Passive Ideation: Having thoughts of suicide or self-harm without a plan to carry them out.
• Active Ideations: Having thoughts of suicide or self-harm with a developed plan to carry them out.

Just as a person with diabetes cannot make their bodies produce insulin, a person with depression or other mental health conditions cannot produce the chemicals or neurotransmitters to cure themselves. 

Signs and Symptoms of Suicide:

Behavioral Symptoms:

• Giving away possessions
• Talking about death, dying, or not being around in the future
•  Using phrases like: "When I'm gone" or "If I were to die"
• Saying goodbyes or making amends
• Collecting items that are harmful or potentially dangerous
• Social withdrawal
• Increased alcohol consumption or drug use
• Not participating in activities that once drew interest
• Engaging in risky behaviors

Physical Symptoms:

• Scars or physical marks on the body of past attempts or self-harm
• Drastic changes in eating or sleeping habits
• Chronic illness
• Cognitive symptoms
• Obsessing over ideas that the only end to emotional pain is through death

Psychosocial Symptoms:

• Feelings of helplessness or hopelessness
• Beliefs that emotional pain is unending 
• Self-hatred/loathing
• Paranoia
• Emotional pain
• Frequent or drastic mood swings
• Sudden changes in personality or behavior
• Intense anxiety or increased irritability

What Never To Say:

While it's difficult to watch people we love go through depression or suffer from other mental health disorders, sometimes the things we say in our efforts to help can be either misconstrued or not properly conveyed, resulting in counter-productivity, even with the best of intentions. The wrong kind of platitudes can induce guilt, or make a person already suffering feel minimized or dramatic, misunderstood, or attacked. So what are some of these things? This list is by no means finite.

• Try harder.
• Snap out of it.
• Power through.
• You'll be fine.
• There are many reasons depression develops, and a person cannot necessarily control the symptoms and risk factors.
• Don't over-simplify
• Cheer up.
• Smile.
• Life's too short to be down.
• Just as a person cannot make their body produce the proper chemicals to balance them out, they cannot decide to just be happy.
• Don't express disbelief
• But you look fine.
• But you've got such a good life.
• Many people suffering from mental health are good at hiding their disorder and can come across as healthy.
• Reasons they may hide their disorder: embarrassment, guilt, shame, incompetency, afraid of people's responses, or fear people will think poorly of them or stop loving them.
• Just because some can be good at hiding their disorder publicly doesn't mean their struggle should be minimized or dismissed. 
• Don't dismiss their pain
• It can't be that bad.
• It could be worse.
• You think you've got it bad.
• What may seem a simple problem to a healthy person can be insurmountable to someone with mental health conditions. They often lack the coping skills needed to function or overcome their obstacles.
• Don't blame
• It's just in your head.
• Depression and other mental disorders are not simply in someone's head but instead are clinical illnesses. Just as someone's cancer isn't simply in their head, mental health is also an illness of the body.
• Sometimes when we get frustrated, angry, or even worried, we can seem apathetic to the situation.
• Shaming
• Other people have problems too.
• You're overthinking this.
• It's not always about you.
• Depression is not a matter of being selfish or self-absorbed.
• Don't ignore them.
• Pretending things are fine.
• It's okay to admit you don't understand but you're there for them. Sometimes simply sitting with them can be helpful.
• Reassure that you're there and that you love them.
• Avoid cliches and platitudes
• This will pass.
• God doesn't give you more than you can handle.
• Let it go, move on.
• Escaping their emotional state can seem endless, a future uncertain or unattainable. These statements can also minimize what they're experiencing. 

How to help:

• If you identify any of the symptoms of suicide in someone you know, reach out. Do not wait.
• Establish a safe environment.
• Reach out to a mental health professional or crisis hotline. 
• Call 988
• National Suicide Prevention Lifeline: 800-273-TALK (8255)
• After you've connected someone at-risk with professional support, reach out and follow up. 
• Educate yourself and others on what to look for, how to reach out, and raise awareness where you can to stop the stigma around mental health and suicide.
• If you're suffering from depression, other mental health conditions, or are experiencing suicidal ideologies, know you are not alone and reach out where you can. 

*Sources:

Healthline

Very Well Mind

CDC

BeThe1To

Biltmore Counseling Center

SunStone Counselors

Psychiatry.org

Save.org

AFSP

Nimh.nih.gov

 

World Mental Health Day

I'm a day late with this post, mostly because I wasn't quite sure how to write it. But it's an incredibly important date that shouldn't go overlooked. Here are some statistics to let process in the back of your mind:
- 1 in 5 adults in the U.S. experienced some level of mental health issue in 2018. That's over 47 million people. That is roughly the population of all of California and Georgia combined.
- 1 in 25 adults in the U.S. experienced some sort of serious mental health in 2018.
- Over 16% of youth in the U.S., ages 6-17, experienced mental health disorders in 2018.
- 43% of adults who suffer with mental health disorders received treatment in 2018.
*Guys, that's less than half!
- The average delay between the manifestation of the first symptoms of mental health and proper treatment is 11 years.

I find these numbers staggering. I find them heartbreaking. And I think we can do better. In 3 days it will be the 5 year anniversary of my bipolar II diagnosis. Yet my first symptoms manifested 17 years ago. Possibly as far back as 20 years. Just last month (Sept.) I hit the 1 year anniversary of my current medication regimen. It took nearly 4 years for me to find the right combination. And I'm considered one of the lucky ones.

Getting to where I am today was perhaps the most difficult thing I've ever gone through - both physically and mentally. I recently came across an old journal entry I wrote in the early days of my bipolar disorder (BD) diagnosis and it cleared the fog as I realized in reading it how far I've truly come since that time. Some days it doesn't always feel that way, but that journal entry put a whole new perspective on where I am today.

I couldn't have done any of this without the support system that I have. Support from my doctors, support from my family, support from my friends, and support in my faith. I have a hard time reaching out sometimes. Sometimes it's because I simply don't recognize the changes in myself. But fortunately, I have people so close to me that they spot those red flags incredibly early on. And sometimes I don't reach out because I'm simply ashamed of my decline (either a depressive episode or a hypomanic episode). I will think to myself, "I've done everything right, yet here we go!" And then I feel I've failed. But when I'm stable and riding in a healthy space I remember that I will always cycle. It's not about preventing cycling. That is impossible. It's about identifying it early enough to intervene. It's about reducing both severity and frequency.

It's okay to talk about suicide. 

Suicide is the 2nd leading cause of death in the U.S. for people between the ages of 10-34. It is the 10th leading cause of death in the U.S.

I've seen first-hand the devastating impact that suicide has on people. We need to be having open conversations about suicide. That dialogue shouldn't begin afterward. The stigma behind suicide is often the misunderstanding that there is some kind of character flaw in the person, that it is a sign of weakness. There is often this idea that someone who is depressed needs to just forge ahead, just push through, that sunny days are coming. But it is not that simple. If it was, these numbers wouldn't be what they are. That is a very narrow and inaccurate perspective. Suicide and self-harm are symptoms of severe mental health disorders. Some of them we can see in those we love, others we don't. Being open about the conversation early on and providing avenues for support can go a long way in helping prevent this tragedy.

We stop the stigma by educating ourselves, by understanding the root of the causes of suicide. By learning how we can offer support. We can't be afraid to have the hard conversations.

So on this World Mental Health Day, I encourage you to be open, to not hide behind a cloud of shame. Educate yourself on the signs of suicide and mental health. Learn how you can support someone you love who suffers. And if you are the one who suffers, I can't stress enough how important it is to get help. Proper treatment is one of the best ways to help prevent this tragedy, and you should never be ashamed to admit when you need help. Mental health disorders are just that, disorders. They're not a result of anything anyone has or hasn't done.

Here's all my love, to all of you out there, from someone who knows all too well what it's like to both soar high and plunge deep. You'll always have a friend in me.

*statistic source: NAMI

One Year Later: what our journey with dyslexia looks like today

It's October, which means it is Dyslexia Awareness Month!

Last year I shared our story with dyslexia - mine and my son's. No, I am not dyslexic, but my son is, and together we have been on both a rocky and rewarding journey. I tell our story to promote awareness, understanding, and acceptance. I tell it to promote change in our education system.

Over the years I have encountered the many misunderstandings and myths of dyslexia. So first, let's get clear on what dyslexia is and what it is not.

Dyslexia is a physiological characteristic relating to brain function that affects decoding, phonological and phonemic awareness, as well as reading fluency. It often impacts reading, comprehension, spelling, and writing. It is not a disease.

Statistics show that 15-20% of the global population falls on the dyslexia spectrum. Yes, it is global (encompassing all languages) and yes, there is a spectrum. No two cases are alike and characteristics of dyslexia range in severity from moderate to severe. It is also important to note that it is estimated that 1 in 5 Americans struggles with reading.

Not all struggling readers are dyslexic, and not all dyslexics struggle to read. Yes, you read that correctly. With early intervention and appropriate remediation, dyslexic readers are able to learn to read, they just do so with a different approach and technique than mainstream learners.

Dyslexia is not a result of:
1) poor diet
2) poor parenting
3) poor schooling
4) low IQ

Our journey is a long one. I suspected early on with my C that something was different when it came to reading, although at that time it was just his alphabet because that was how early on I picked up on this. My concerns were dismissed frequently when he was young. I was told that all children learn at different paces and that he would get there. But in my gut, I knew something was different. I had no empirical data or even a clear understanding of what it was, but deep inside my mom-tuition told me something was up.

Over the years I met great resistance from our school's administration, doctors, and insurance companies. Let me be very clear, C always had wonderful teachers, and they all did everything they could to help and support him. But he needed more than he was getting. His teachers had 60 children... there was only so much they could provide one-on-one for him.

The first time the word dyslexia was put out there for me, I thought it was a preposterous idea. But only because I had such a limited knowledge and understanding of what it was and what it looked like. I had simply thought that dyslexia was reading letters backward. Wrong.

These were some of the signs C exhibited:
- Trouble learning to recognize letters and remembering sounds they made
- Difficulty with the concept of rhyming
- Confused letters that looked similar (b/d, p/q) - although it is important to note that many children can mix these up as early readers/writers as late as 3rd grade.
- Confused letters with similar sounds (d/t, b/p, f/v)
- Struggled with decoding basic word structure such as CVC words (cat, dog, sat, car, bat, etc)
- Difficulty learning his Zeno words
- Trouble identifying individual sounds in words and blending sounds to formulate a word
- Trouble identifying reading patterns within words (CVC, CVCe, "two vowels go walking", er, ir, ur, ou, gh, wh combinations)
- Difficulty remembering how words are spelled and applying spelling rules
- Skipping over small words in a text (of, the, a, to, for, at, etc)
- Struggled to read a word he had just read in a previous sentence
- Throwing out completely random words than what is in the text, some beginning with the same letters or having the same ending, but weren't even in the ballpark with the actual word
- Poor spelling (and handwriting)
- Struggled to identify and process punctuation in a text (such as commas or periods and contractions)

Like I said, I met a lot of resistance from the school's administration. I had very naively believed that C's education would be a priority to them. Blindly trusting them bit me in the butt. Hard. I probably still have those bite marks. Once I realized I wasn't going to get what I needed from them to help him I had to get creative. I reached out to so many people who worked in the public education system, many of them out of state. I learned that while things like the Free and Appropriate Public Education act (FAPE) and the Individuals with Disabilities Education Act (IDEA) were regulated federally, the programs that were actually in our schools varied from school to school, district to district, and state to state. I had to learn what C's rights were when it came to his education. I studied our Board of Education Special Education Rights of Parents and Children Procedural Safeguards Notice (that was a mouthful!). I studied federal and local bills in regard to special education. I consulted doctors and psychologists. And I read everything I could get my hands on. I was able to find a loophole in the very broken system of special education in our public schools and in the end that is what qualified C for the IEP he so desperately needed - over two years after I really first pushed the issue, and over five years after I saw the first red flags.

For our full story, you can read last year's post here.

I'm not proclaiming to be some hero. And I certainly don't know everything! But I did go out there and fight with everything I had to advocate for my child. And it has made a world of a difference.

Today, C reads. Not flawlessly and not on grade-level, but he reads. He gets great grades in school. We've found books that he's both able to read independently and loves to read. Yes... loves to read. His IEP allows for support and accommodations in his daily education program and he attends Resource four times a week. He also attends a private special education center for his dyslexia after school. If someone would've told me two years ago that we would someday be where we are today, I would've told them to shut the front door! Sometimes it feels surreal that we are where we are. But then I pinch myself and realize I'm not dreaming.

C excels in math and science. He has a very engineer-oriented brain like his dad. Although a recent development is that he also has a love of writing. Be still my heart. He has turned in to quite the storyteller and fills a notebook with those stories. He's also a dual-language learner. He's considered an intermediate language speaker in Chinese (mandarin). And he is a piano player- he reads sheet music so well.

C is one of the hardest workers I know. And despite his hurdles, he still gets up each day, and he shows up each day. I'm always told that his eagerness to learn and positive attitude set him apart from so many. He doesn't let his dyslexia hold him back from anything and he doesn't take for granted the additional support he gets. I believe that my husband and I are instilling in him, and his sister, what education can do for us, where it can take us. I see the conviction in his eyes when he tells me what he wants to be when he grows up and that he can actually be it.

Our journey is far from over. C will always be dyslexic, but my goal, my intention, is to give him every tool I possibly can so that he can go out into this world and make a difference...so that he can go out into this world and be proud to be himself.

World Bipolar Day

Today, March 30th, is World Bipolar Day- strength for today, hope for tomorrow. The vision for WBD is to bring awareness to the world and to help stop the stigma associated with bipolar disorder.

This is an important day for me, and an important post, as I share with you all that I am bipolar. My diagnosis has been a part of my life that I have kept very private. Until now, it is only my immediate family and closest friends that I have shared this with. But today I step out of the metaphorical closet. I decided that in keeping this a secret I am perpetuating the stigma that surrounds this disorder, and any mental health disorder for that matter. By standing up and owning this part of myself, I take the power away from it, and away from the often negative opinions and understanding people have of the disorder. So, on this global awareness day, I have decided to share my story.

First, let me explain clinically what BD (bipolar disorder) is:
Also known as manic-depressive disorder, BD is a brain disorder that causes unusual, extreme, and unpredictable shifts in mood, energy, and activity levels. These shifts swing (or cycle), sometimes in rapid succession, between acute and severe episodes of highs (mania or hypomania) and lows (depression). BD is a lifelong disorder with no cure, and although it can often be managed through medication and psychotherapy, those with the disorder will always and inevitably cycle.

Approximately 10 million Americans suffer from bipolar disorder.

I was diagnosed with bipolar II over 4 years ago.

There are four known types of BD:
-Bipolar I disorder: defined by severe manic episodes lasting 7 or more days, and severe depressive episodes lasting 2 or more weeks. Episodes of mixed features (both extreme high and extreme low episodes occurring simultaneously) are possible.
-Bipolar II disorder: defined by a pattern of extreme depressive episodes and hypomania (unusual euphoria, but typically never reaching the full height of BD I mania). One major episode of depression and hypomania is required for diagnosis. Episodes with mixed features are possible.
-Cyclothymic disorder: defined by low-level hypomania and depressive episodes lasting for at least 2 years. Symptoms do not meet the same diagnostic requirements for hypomanic and depressive episodes as BD I & II.
-Other specified or unspecified bipolar disorder and related symptoms: defined by BD symptoms that do not match the other three types as they are induced by drugs, alcohol, or medical conditions, such as Cushing's disease, MS, or stroke.

Did you know there were that many types? I didn't until my diagnosis.

Episodes of psychosis can sometimes lead to the misdiagnosis of schizophrenia.

Research shows that as many as 70% of BD patients also suffer from ADHD. Anxiety and insomnia disorders also have a high prevalence with BD. Successful treatment for BD can be difficult when these disorders co-occur with one another, often masking each other.

Due to the less extreme levels of hypomania, BD II often goes misdiagnosed as unipolar depression (depression unrelated to BD). My bipolar went misdiagnosed for nearly 17 years. I was diagnosed in 2014, and approximately two months later I was diagnosed with anxiety disorder. A year following that I was diagnosed with clinical insomnia, and almost 4 years after my initial diagnosis I was also diagnosed with ADHD. I know, I sound like a hot mess.

For many years I was treated for depression, and it wasn't until my BD diagnosis that I learned that some of my extreme episodes were likely induced or exacerbated by the antidepressants that I was taking at the time. Treating a patient with BD with antidepressants can often have an opposite response, causing dangerous cycling. Treating BD is finding a tricky balance, often through mood-stabilizers, anticonvulsants, lithium, and other medication mediums along with psychotherapy because there are essentially two disorders being treated- and they are on opposite sides of the spectrum (high & low). Although my depressive episodes appeared as early as twelve or thirteen years old, it wasn't until my college years that I suffered my first identified hypomanic episode. I just didn't know that that is what it was until years later. Looking back, there were glaring red flags all over my medical history, but my doctors (and they were good doctors) missed it- for nearly 2 decades.

A lack of awareness isn't limited to the general public- doctors often miss the signs, especially outside bipolar I disorder, because of the less extreme highs, which tend to go unreported. Hospitalization and psychosis are less prevalent with the other types of BD, although still possible.

The very first time the idea of BD was floated for me I thought it was completely preposterous. I mean, I was absolutely nothing like Charlie Sheen! I was referred to a psychiatrist and after extensive evaluation, I got my BD II diagnosis. I was crushed. The name alone instilled fear inside of me. I was overwhelmed with shame. I didn't want anyone to know because I thought it meant that I was broken. I thought no one would want anything to do with me. I thought I would lose all credibility and just be another label... she's crazy. I thought that something was wrong with me. After I began to learn more and more about my disorder, the more the lightbulbs turned on. I remember having these Ah-Ha moments when I realized that certain thoughts and behaviors of mine weren't normal for most, and yet they could suddenly be explained.

After my diagnosis, I naively believed that I would start treatment and that I would instantly level-out and stabilize. And oh boy was I wrong. I had read stories of people taking 10 years to find the right medication combination for effective treatment. 10 years? I had already been suffering for 17! My doctor and I began my search for the "perfect" cocktail for my treatment. In four years, I have gone through over a dozen medications, and at least 3x more than that of dosage changes. The side-effects were often as extreme, and sometimes as dangerous, as my episodes and took a very real toll on my body. I've had many, many frustrated and emotional moments just trying to get through... more than once I wanted to give up, but I also wanted, so desperately wanted, to find something that worked for me. Every time I tried something new I was filled with both fear and hope... how terrible would I feel, how would my body tolerate and respond... could this, just maybe, be the one that would change it all? As I sit here now, writing my story, I can say proudly that the regimen I am on is the same one I've been on for 6 months now. I can't emphasize enough what a victory this is for me.

More times than I can count I have cried, completely broken down with frustration and resentment... why me? I felt I was dealt a bad hand. But at the end of the day, I put my head down and forged ahead, even when I felt like there would never be a light at the end of the tunnel. And as much as I wanted to get better for myself, I was that much more determined to get better for my family.

This journey, both before and after my diagnosis, has been a rough one for my family. Nothing about it has been easy. But my amazing husband has stuck by my side every inch of the way. He doesn't look at me and think this is a road I take alone because I'm the one with BD; he looks at the road as something we take together because we're a team. And I never want to be a mom who can't be there for my kids. Everything I do to get better I do for them.

One day, a couple years ago, my C came to me very upset as the realities of his dyslexia were dawning on him- specifically the awareness that there was no cure. So I got brave, and I sat him down and told him about my BD. I didn't give many details, of course. I didn't want to scare him. But I so clearly remember seeing a wave of calm wash over him. Yes, he would be dyslexic forever, but I would be bipolar forever. I took medication to keep me stable, and he got extra help at school and went to a learning center... we both did things to help us manage... we would overcome. It was the first time I looked at my disorder as a gift- I had something to offer because I gave C a confidence that day that he never had before. And he still carries it with him.

A gift... maybe, despite the extreme struggle and the constant fight... maybe my BD was a gift, too. I told Tim when I was working on my latest novel that I had to have a little madness in me to write 130,000+ words in 2 months. There is a high prevalence of artistic qualities linked to bipolar. And I think that I am no exception to this. I really believe that I can do what I do, that I can write what and how I write because of this.

Cycling is hard. Not just on me, but on those closest to me. And despite how stable I can be, I will always cycle. It's the nature of BD. And sometimes I really hate that I'm not allowed to just have a really bad or a really good day without the panic at the idea that I'm going to start cycling. But today, over 4 years later, I'm more aware. I have a better idea of what to watch for. I know some of my biggest triggers. And, most importantly, I have people in my life who know me so well that they pick up on the smallest changes in me. I'm typically the last person to the realization-party when it comes to recognizing my cycling patterns, but I feel so incredibly blessed and fortunate that I have people who have my back.

I get up every day and have to make the conscious decision to be a fighter. The moment I get complacent or begin to think that I can take a mental vacation, that's when I tend to slip. I will share in good humor a little of what hypomania has been like for me... it's reading Jane Eyre, Pride and Prejudice, Sense and Sensibility, The 100, and A Fine Balance in exactly 7 days. It's not sleeping more than a collective 10 hours in an entire week. It's every crafting project for two years completed in two days. It's making so many holiday decorations that I give them away in droves because I can't fit any more in my house. I won't share the dark depressive side of things. It's... well... depressing. It has been crippling at times and is a painful place for me to go to. But even in the lowest, darkest places, I try to hang on to the knowledge that I will eventually come back up... up... up... and up. It's the nature of manic-depression.

It is important to note, however, that most individuals who have manic-depressive illness are normal most of the time; that is, they maintain their reason and their ability to function personally and professionally. - Kay Redfield Jamison, Ph.D. Touched with Fire 

Over 43 million Americans suffer from some form of mental health - or 1 in 5 adults. I am telling this story today to STOP THE STIGMA. I'm not broken. In fact, my BD allows me to truly rock at certain things because my mind thinks in so many different ways. Having bipolar doesn't mean I'm a bad mom, a bad wife, a bad friend. It doesn't mean I'm not good at my job. It doesn't mean I'm lesser. It's how God created me.

Though my soul may set in darkness, it will rise in perfect light; 

I have loved the stars too fondly to be fearful of the night. - Sarah Williams

A huge shout-out to one of my closest, dearest friends. She, too, lives with the curse and gift of bipolar disorder, and she wears it proudly. I've had an amazing support system since day one, but I never realized that I had been an island until someone else showed up in my life with BD. She sings the same tune to her soul, and only we can understand each other the way we do. She is the one who gave me the courage to step out of the shadows and share this with all of you today, not because I'm some epic failure, but because I go out there every day determined to be better than the day before.

Thank you to the many who love and support me, especially my very best friend, Kristin. She and Tim are my tribe. She has stuck by me through absolute thick and thin. Her love for me is truly one of my greatest blessings. I wouldn't be where or who I am without her in my life. She and Tim are everything to me. There are so many others out there who have been there with me through my struggles, and they are too many to name, which makes me all the more blessed. This post is dedicated to you, for all you do for me, in good times and bad. I am grateful beyond words.


Sources:
WebMD
AdditudeMag
Psycom
nimh.nih (national institute of mental health)
Nami (national alliance on mental illness)

*This article has been updated

Our Journey

October is one of my favorite months. The pumpkins on my porch, the golden yellow, crisp leaves falling from the trees. The mountains are so fiercely red that they appear to be on fire, especially in the evening sun. The days are still warm, but carry a hint of coolness on the breeze and the nights become chilly as it gets darker earlier and earlier. But October has become a different kind of special to me. It's also Dyslexia Awareness Month. And this is our story.

My son, my beautiful and wonderful son, and I have been on a journey I never could have imagined. The terrain is rough, some days impossible. There are steep cliffs that have to be traversed. But even the smallest victories are sweet, and they sustain us, keeping us going and giving us the strength to scale the next mountain. It has all been uncharted for us, and it is my heart and my determination that fuels my fire and lets me push on, even in the darkest of times.

Other mothers out there will understand when I say that I knew, from so early on, that something was different. It was in my gut. And I have no way to describe it other than that. C exhibited the first signs of his dyslexia very early on when he began to learn his alphabet. It was a struggle- letter identification and the sounds each one made. I asked his teacher about it way back in preschool. But she dismissed my concerns and told me that every child learns at their own pace. And yes, that's very true. But I knew something was different. In kindergarten he showed some improvement, but not nearly at the same pace as his classmates. But I was encouraged to keep reading to him. To keep having him read to me.

First grade brought a whole new kind of struggle into our lives with his academics. And his reading scores continued to drop- lower and lower, despite all of our efforts at home: zeno word flashcards, CVC repetition, and my favorite... "he just needs to read more." That spring, as we approached the end of the year, I attended a workshop for parents of struggling readers. And that was the first time the word dyslexia was used to explain my son's struggles. I was certain that wasn't the case. The school kept telling me that it would click for him. My understanding of dyslexia was very limited, and very inaccurate. I thought it was reading letters backwards. I was so wrong.

Second grade I decided to be preemptive. I approached his teacher at the very beginning of the year, trying to establish a plan to give him extra support. She was wonderfully helpful, so eager to accommodate and give him any extra support she could. But there was very minimal progress. His class moved forward and he fell further behind. By the middle of second term it was recommended to me to find outside support. He needed an intervention that his teacher could not provide. So that's what we did. And after a few evaluations, and some time spent with his new learning center, the word dyslexia came up again. It had been lingering in the back of my mind since that workshop but I had continued to wrestle with it, trying to disprove the possibility. The director at the learning center said C met all the criteria for dyslexia.

I went to the school in search of support but received a "refusal of proposed action." I was told that he was "below benchmark range, but not well below benchmark range... [he] will likely benefit from strategic support and intervention from the classroom." But we had tried that. And it wasn't working. I was beginning to watch his rapid decline, feeling powerless to stop it, and I felt abandoned by his school's administration. I was told to take him to his pediatrician for the suspected dyslexia because it was a medical condition. The doctor told me it was a learning condition and sent me back to the school. My head was spinning in confusion. Why was I the only one who wanted to help him?

I ended up finding a psychologist who gave me some direction. Finally. She wouldn't be able to test C for months because of her patient load. But, the school was legally obligated to conduct the testing if I requested it in writing. So I went back to the school with my request. I sat down with the vice principal who put a document in front of me. It was so technical in nature and I had no idea what I was actually looking for, so I relied on her recommendations and trusted her when she told us what to accept and what to decline. He was denied a second time. I was devastated. And I felt stuck. Unsure where to turn next. I was adamant with the school about how low his test scores were, but they just told me, over and over again that they weren't low enough. They needed him to completely fail before they would intervene. Why couldn't they see that I was trying to prevent that? 74% of students not reading on grade level by the end of third grade will not be on grade level by tenth grade. And students who cannot read on grade level by 3rd grade are 4x more likely to not graduate high school by age 19. We were approaching the end of second grade, and statistics showed I was up against the clock; I was running out of time.

The independent psychologist grossly disagreed with the school's interpretation of C's test results. But the school stood firmly in their rejection. Another hit that we took at the time was the denial of our health insurance to cover any of our sessions with and testing by the psychologist. The ADA (American Disabilities Act) includes dyslexia as a disability because it meets the criteria of limiting major life activities (reading and writing). But health insurance defines it as a learning disability rather than a mental or physical disability. However, dyslexia is widely regarded as a neurobiological genetic disorder.

After so many hits- from the school, from the insurance- I was getting mad. And anger is a very driving force for me. And when C started third grade, I was determined to get him the help that he needed. His teacher was amazing. And supportive. And she appealed to the school but they once again rejected our request for testing. Although they had the capability of testing early, they were not required by law to test again within a 365 day window. And that's when I learned that the very tests I declined, based on our school's recommendation, were the ones that would have been most crucial in identifying his deficiency. So I set out on a mission- I learned everything I could about dyslexia, how it works, what kinds of remediation are effective, and what his legal rights were. I studied the fine print of the school's procedural safeguards manual, I learned about the IDEA act, and FAPE. I studied, federal senate bills for the department of education on the national level, I studied house bills for our state board of education, and I studied the testing options out there... and I found one that we neither accepted, nor rejected, and I went to the school demanding that he be tested with the GORT (Gray Oral Reading Test). They were legally obligated to test him. They were very curious about how I knew of the test, and of the laws that required them to follow through with it. I just smiled at them. I was going to hold them accountable. And my ignorance wasn't going to be their advantage anymore. They tested him. And he failed miserably. And that qualified him for an IEP. It was a true victory.

Although C still doesn't have a clinical diagnosis (which requires extensive independent testing with a very heavy price tag), he was able to qualify under the SLD (specific learning disability) category of the IDEA act (Individuals with Disabilities Education Act) because his academic performance was adversely affected in reading and writing. A student who qualifies for assistance under IDEA is entitled to a free and appropriate public education (FAPE).

Our state has little in place to support dyslexia in our schools. There is both a lack of awareness and education to be effective with remediation. In fact, most states have little, if nothing in place. Yale University research shows that approximately 1 in 5 people struggle with reading. And it is estimated that nearly 15- 20% of the global population falls somewhere on the dyslexia spectrum. Yes, there are varying degrees. It is not a disease. And there is no cure. But proper remediation can help give those with dyslexia tools to be successful. Most children are not diagnosed before age 7, but research shows that intervention as early as 3 years old can make a difference. Dyslexia is not simply reading letters backwards. It is a struggle with word decoding, phonological and phonemic awareness, and reading fluency. It affects reading and writing, and often impacts comprehension. It is not a result of a low IQ; it is a physiological characteristic. In fact, many people with dyslexia exhibit an above-average IQ.

As we approach our annual IEP meeting, I am prepared to come in hard. I'm no longer afraid to ask the hard questions, and demand answers to them. I have learned the hard way what it takes to be an advocate. And I fight fearlessly for my son. My mission is to make sure he has the opportunity to access the same level of content that his classmates are learning to master rather than having the standards of performance or content altered to cater to his level of deficiency. Our journey is definitely on-going, and some day he will take charge of it for himself. I want him to grow up with the same opportunities as other children. And one day I hope he can look back and say, "my mom was my warrior."


*Sources for statistics used in this post:
Understood
International Dyslexia Association (IDA)
Edweek
US Dept. of Education