Ransom: The Medical Mystery That Stole Our Son and the Fight to Get Him Back Chapter One

 Below is the first chapter of my recently published book, Ransom: The Medical Mystery That Stole Our Son and the Fight to Get Him Back. At the time I originally wrote it my son was only eleven, so I wrote it under the pen name Hope Shepherd to protect his privacy until he was old enough to decide whether or not to share his story. Now he is coming up on fifteen (how did that happen?) and very open to sharing his story in the hopes of helping others. If you haven't heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep) you're in good company. All I knew when we embarked on this journey no family wants to take was PANDAS was an acronym for some medical syndrome. For six years I didn't know it was the kidnapper responsible for stealing our three-year-old son in the night even though he never left his bedroom. Little did I know this mysterious acronym would take my son over and over again and threaten to tear our family apart. Little did I know the immense relief I'd feel when we finely found a doctor who would listen, and the profound joy of staring into my son's clear eyes and knowing I had him back. Please enjoy this sneak peak of Ransom: The Medical Mystery That Stole Our Son and the Fight to Get Him Back by Hope Shepherd and Jack Shepherd. If you'd like to read more, get your copy on Amazon or Barnes and Noble. It's available on kindle or hard copy. Reviews are always appreciated. It is my goal to raise awareness of PANDAS/PANS/AE so that our struggle will not have been in vain. Thank you for your support.

Chapter One

Taken

 “Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” ~ Psalm 23:4

I wish I could pinpoint the exact moment my son, Jack was taken. I know it was right around his third birthday, but it’s impossible for me to report with any accuracy the life altering second the kidnapper whisked him away while I was staring at him, as yet blissfully unaware.

            It’s every parent’s worst nightmare - a child snatched from the periphery of your vigilance. Once I realized he’d been taken, I did what any parent would do in this gut-wrenching situation. I searched for him. I called in the professionals. The response was a mix of confused looks, raised eyebrows, and the occasional tasteless smirk. What do you mean, your child’s been taken? He’s right there.

            And he was. When Jack was taken, he never left the house. To the outside world and even those closest, he looked like Jack. How could I blame them for not believing my panic? The only physical feature that gave it away was Jack’s eyes. His sky-blue eyes, clear with calm plus a hint of mischief, were wide, cold, somewhere else. Jack was somewhere else, but I was the only one who knew it.

            I didn’t know where Jack was or who had taken him. All I knew was I put my sweet, quiet, gentle, inquisitive boy to bed one night and woke up with a completely different child. As the years went by, Jack came back, sometimes for days, weeks, or even months, until he was stolen away again.

            When Jack was with me, I savored the moments. I held on to him as he fell asleep and held my breath when he woke. Which child would I get today? Every beat of my son’s heart was etched in my memory from the time he’d grown under my own. Jack was the dream baby who slept four hours at a stretch the first night home from the hospital and switched seamlessly between breast and bottle. Jack was the contented toddler who reached for my hand crossing the street and tagged along on errands without a single protest. He was the preschooler who beamed when he saw my face and proudly presented me with macaroni necklaces and newly mastered sight words.

            The red-faced three-year-old hurling books at my face was not my son. Jack was not the six-year-old lifting a kitchen chair over his head like the Hulk and launching it clear into the other room. My child was not the nine-year-old losing the ability to scrawl a legible sentence.

            But where was Jack, my Jack when this other child, this stranger, was inhabiting his body? Was he stuck somewhere, trying to get back? Why had he left, and more importantly, how could I get him back?

For more information on PANDAS/PANS/AE please visit https://pandasnetwork.org/

What Was I Thinking?!

 I was bored. I needed a purpose other than being a mother of three kids and the wife of a successful engineer. My last child was finally out of the house. After 24 years of staying at home and tending to my family's every need, I was done. Cooking, cleaning, driving, trips to the doctor, vomit cleanup, potty training, visits with principals, therapists, psychiatrists, IOPs, PHPs, and visits from the police (just to name a few). I was deep in parenthood and was ready for a breath of air. But just enjoying peaceful days at home wasn't enough for me. 

I had already published my debut novel and had earned my Master of Fine Arts degree in Creative Writing before my youngest flew the nest, but I wanted more. I wanted to share my love of writing and the world of English with others. How could I not when I had so much passion? So I did a crazy thing. I got my credentials from the state and began applying for teaching jobs. To say I was naive to what lay ahead would be only part of the analysis. It wouldn't be long before I would get a fresh view or a strong dose of the state of our kids as well as what it's like to have a boss who could possibly be a narcissist. 

I entered my new job with anxious anticipation (and when I say anxious, I was nearly jumping out of my skin). The idea of going back to teach was a far different feeling than actually getting in front of the students and teaching. It had been 24 years since I had been in my own classroom. When I left, I was still recording grades in a paper grade book and using a calculator to figure out percentages. We didn't have email to contact parents (or for parents to contact us) or phones with text capabilities. And we most definitely didn't have portable computers and school platforms for teacher-created content and homework assignments. In those 24 years, computers became not only smaller, smarter, and faster, they became (for many schools) a part of the student learning process. Over the years, the use of heavy textbooks has, in many classes, been replaced with e-books. Students turn their homework in online. Handwriting has gone out the window. There was a sharp learning curve, and I had much to catch up on. I should also add that I was hired only two weeks before school started. I believe this is called "baptism by fire" or "dang, you're screwed." 

My boss gave me more information than I could process in the few days of staff meetings before school started. Between the time I had been out of the teaching world and the old brain, I was (as expected) overwhelmed. Not only did I need to learn how the school functioned, but I had to also develop curriculums for my Creative Writing Class and English classes. I spent a fortune on online curriculum materials, but it also saved me time and my sanity, so the money spent was worth it. 

Once school started and I got to know my students, the jitters were replaced with excitement. I loved the students, and I loved teaching them. I got better at navigating Google Classroom and entering grades into Gradelink. I got to know the teachers and enjoyed being at a school as a teacher once again. But what I didn't anticipate was the way my boss went about letting you know if you weren't doing something correctly or to her standards. I would say I was given a two-week grace period to know everything before the comments started. I had no warning because the teachers were pretty tight-lipped about our boss until I opened up the dialogue when I couldn't hold it in anymore. One day, in particular, I was yelled at in front of the students because I let a student go home from the after-school homework club because he was done with his work early. I don't remember ever being so humiliated. First, I was never told that it was not an option (other students could go home early, so why not this student?) Secondly, to be yelled at in front of the students was incredibly unprofessional and could have taken away any credibility I had worked hard to gain with my students. I took the mental beating and then drove home, trying to convince myself not to quit right then and there. But I thought of my students and how fond I was of them. Instead of quitting, I wrote my boss an email stating that I wouldn't be treated like that again. I did receive a half-assed apology followed by a long and unnecessary explanation of the purpose, necessity, and blah, blah, blah, of this and that. But it wasn't long before the passive-aggressive comments began and started grinding me down. The comments would imply that "the boss" was the only one who could do anything right, that "the boss" did everyone's jobs, and if "the boss" didn't do it, nothing would ever get done. "The boss" professed these beliefs daily. 

The negative, back-handed comments continued. I wasn't a bad teacher, nor were my other cohorts, but "the boss" certainly made most of us feel as if we were. When you work for someone who exhibits narcissistic qualities, you will rarely be praised, never receive a real apology, never be told: "you were right" (even when it's obvious), and rarely given credit for the extra work you do. You will also be forced to listen to all the great things they do, including your job. Their egos must always be stroked, that is, if you want to keep down the criticism they dish out regularly. I began to realize that I was working for a narcissist. 

On the website Choosingtherapy.com, Satoris Howes, Ph.D., lists 15 signs that your boss might be a narcissist. My ex-boss checks off most of these signs (if not all). Here are the 15 signs Dr. Howes lists:

1. They talk about themselves almost exclusively.

2. They have fantasies of greatness. 

3. They require constant praise.

4. They show a sense of entitlement.

5. They take advantage of others.

6. They are envious of others.

7. They lack empathy.

8. They are remarkably charming.

9. They are extremely competitive.

10. They find criticism intolerable.

11. They hold long-lasting grudges.

12. They are constantly on the go.

13. They get their supply from having great "communal" skills.

 Working for someone who exhibits the above traits often makes the workplace a toxic environment. A narcissist will grind you down until you are dust. Without the ability to show empathy, your needs will never be met, and therefore, your job will be a wasteland of toxicity and lost dreams. And, like me, you will lose your last bit of patience, tell them to go to hell, pack up your desk (in my case, my entire classroom), and drive away, hoping that that "the boss" will feel the blow as much as you did (but deep down, you know they won't). 

I cried all the way home, sad to leave my students, sad to know that I would not be able to give them the goodbye I wanted, sad that my boss was bound and determined to belittle me to the point of me walking off the job before the job was over. I have never quit a job like this. I am not a quitter. But mental health is important. Too often, people continue to work or live in toxic conditions, allowing it to take a toll on their well-being. Some people even take drastic measures to hurt those who push them too far. It's an expansive problem in our society, being told to "suck it up" and forced to put up with the abuse because if we don't, we are considered weak. No one should put up with that BS. No one should be treated with disrespect or be belittled, or made to feel inferior. And if someone decides to put their mental health above the bullying, they shouldn't have to explain themselves. They are not weak. In fact, they are strong for sticking up for themselves. Fortunately for me, I don't need the money from my job, but those who do, have no choice but to put up with the constant abuse, which only whittles away at their mental health. My advice? Start looking for a new job.

Now to answer the question, "what was I thinking?" Well, I was thinking by going back into the classroom, that I could make a difference in my students' lives. I would like to think I did, even if the time was short. I thought I could share my passion for English, and I'd like to believe I did that as well. I learned a lot from going back into the classroom. Not only did I learn that sometimes kids just need someone to show they care, but I also discovered that praise and the ability to see past the minutia of their behaviors can create positive results. But beyond what I learned about my students, I learned some valuable lessons for myself:

1. I will never work for a narcissist ever again.

2. I will never be molded into a robotic teacher.

3. I will always look out for my students' mental health.

4. I will not be made to feel inferior when I know I am intelligent, reliable, and competent.

5. I will never allow anyone to talk down to me. I am enough.

6. I will continue to find ways to be a guiding light for those who need it in an environment that is supportive.

Who knows where the next adventure will take me. I am open to the possibilities. Perhaps I'll finish the novels I started before my life changed its trajectory. All I know right now is that I am at peace with my decision. As much as I love my students, I just couldn't compromise my mental health or who I am as a person. There comes a time when we must know when to walk away. My day was today.

What You Didn't See

 "Why fit in when you were born to stand out?" Dr. Suess 

To the woman who turned and stared at my son at the zoo,

  I know, I know. Open letters on the internet are so overdone. Nevertheless, I couldn't let this one go. You are just one of many, but you are the most recent. We were near the zoo exit when you witnessed my eight-year-old son have a meltdown. 

Your back was turned when it started. I guess you were waiting for your food as we were near the stands. You spun around when you heard the screaming. Sure, that's a reasonable, knee-jerk reaction. When you see the source of the screaming is a struggling child, when you see a mother struggling with her child, you could politely look away and mind your own business. Your other option is to offer a sympathetic smile and/or encouraging word. Those are the only two acceptable options I can think of.

You chose neither. You stared. No, I'm sorry, that's not accurate. You glared - a full-on, mouth opened, eyes narrowed, intense, shaming glare. You gaped at my son like he was one of the wild animals on display. Your glare was meant for me, too. Your judgement was written all over your face.

I could see the scene from your perspective - I know what you saw. You saw a mother who couldn't control her child. You saw a bratty big kid throwing a fit over ice cream. You saw a kid who was "too old to be acting like that." You saw a child who needed a firm hand and a harsh warning rather than help coping and gentle understanding.

You stared hard but you stared blindly. You saw wrong.

I know what you didn't see.

You didn't see the meticulous preparation that went into that seemingly simple zoo trip - and I don't mean just packing a backpack. With a neurodiverse child you can't just pack up and go. You need to show visuals and clearly outline expectations. You have to be hypervigilant in case of elopement or impulsivity. You have to have a backup plan and an escape plan in case it all gets to be too much. 

You'll silently but joyously celebrate every second of success, because you remember the days before diagnosis and in home therapy when you couldn't safely leave the house with your child. 

Yet, those things are not the biggest obstacle when it comes to outings with my child. The biggest difficulty we face as a special needs family is people like you.

I know what you didn't see.

You didn't see my son's autism or his ADHD because these are invisible disabilities, which left me to wonder - would you stare at a child in a wheelchair? Maybe you are the type of person who would do that, but I'll give you the benefit of the doubt and assume you're not. I truly hope you're not. The point is if you wouldn't stare at a child (or adult, for that matter) with a visible disability, you shouldn't stare at a child with an invisible disability. How would you know? How about this? Don't stare. Period. Unless you're looking at the animals at the zoo, but when we're talking about people going about their day, I really can't fathom a situation in which it's appropriate to stare. If your life is so mundane that you feel an insatiable need to stare at people, do yourself and the rest of us a favor and stay home watching reality television. 

You didn't see my son's autism, but more importantly, you didn't see him. You didn't see his excitement for the zoo or his voracious love of animals. You didn't see him defeat his anxiety to leave the house. You didn't see him carefully studying the map with his beautiful brain and successfully guiding us where we wanted to go. You didn't see him saying "hi" to the birds and imitating their unique sounds. You didn't see his determination to find the wolves or his bravery crossing the high bridge even though he's afraid of heights. You didn't see how he made sure to patiently navigate me to the elephants even though he was so anxious to see the wolves, because he knows how much I like the elephant exhibit. You didn't see him stoically navigate his disappointment when we finally reached the wolves and they weren't out. You didn't see him transition to the next animal. You didn't see him share the map with his brother. You didn't hear him laugh at the antics of the monkeys. You didn't see him handle the crowds, managing his anxiety and the sensory stimuli. 

Where there was a day full of successes, you, in your ignorance, saw only failure. You saw a failing parent and a failing child at the end of a long, hot, successful day.

You didn't see him grapple with another (small, in our eyes) disappointment when the stand was out of his favorite ice cream. You didn't hear what he heard when I told him we'd check other stands we passed to see if they had it. He expected something that didn't happen, and for a person with autism this can be the lynchpin. Perhaps to you or me not seeing wolves or the stand not having a particular ice cream bar is not a big deal. Allow me to open your eyes a bit. An individual with autism often relies on knowing what to expect and what's coming next. For my son, even a small change in plans or shift in expectations can dysregulate him. Therapy helps and he works hard at it, but he still struggles. You saw a tantrum when what you were really watching was a meltdown.

You didn't see my son's autism, but more importantly, you didn't see him. Honestly, I feel sorry for you. Your world must be very small. You stare but you are blind - blind to neurodiversity and difference. You're missing out on getting to know the outliers who have struggles, victories, and entire lives outside the periphery of your narrow vision. 

Let's replace assumptions with tolerance. Let's replace ignorance with knowledge. Let's replace judgement with compassion. Let's open our eyes and look beyond ourselves.

I feel sorry for you.

There's so much you didn't see.

Terrible Teens?

Teenagers are unpredictable, temperamental, impulsive, sexually confused, insecure, defiant, and exceedingly needy beings who require more patience than their two-year-old counterparts. Compile all these words into one and I would say, teenagers are tricky.

Being that I am on my third teenager, this stage should be easy. I should have all the answers; I should have this down pat, able to maneuver around the land mines that come with raising teenagers. But here's the first thing I have learned: no two children are alike and no two children can be raised exactly the same way. 

My first two children were relatively easy teenagers. My oldest, a boy, was the easiest which was such a treat since he was the most difficult between the ages of about 5 to 13 (and also when he had colic as a newborn). I shudder at the memory of the tantrums and meltdowns he seemed to have on a daily basis due in part to his ADHD. There were times when I wondered if I would lose my sanity and there was always that fear that I would do something to hurt him in the process of trying to control his raging outbursts. But, I survived and so did he, both of us growing through the process and gaining a better understanding of his needs. My second child, a daughter, was, and still is, a people pleaser. Although she was hypersensitive as a baby, never allowing me to put her down, and had her share of meltdowns, she tended to listen and follow rules making it easy to impart my husband's and my wisdom and expectations without resistance. As a teenager, her struggles were more with friends and school than with her parents. So, when the third child became a teenager, my husband and I were ill-prepared for what we would encounter and endure (and we are not done yet).

My third child was an amazingly easy baby. She rarely cried except if she was hungry or her diaper needed changing. My husband would often comment that if he didn't know better, he wouldn't know there was a baby in the house. I would tote my little bundle everywhere, even to school when I would volunteer, and she would sit happily in the stroller and almost never make a peep. I was so thrilled to have finally gotten my easy baby. But through the years, she became more difficult. Like my son, I considered her a strong-willed child who pushed the boundaries we had placed around her. But nothing could have prepared us for the teenage years.

When my third child was in fourth grade, she complained of being bullied by another girl. The school didn't seem to do anything about it, even after a number of other parents complained that their children were also being bullied by the same girl. I made a decision to take her out of that school and have her start a new school at the beginning of fifth grade. Little did I know that there was another bully, a boy, at this new school who quickly latched on to my daughter. At first, my daughter didn't say anything about it but by sixth grade, it was taking a toll on her. Eventually, this boy bully and some of his friends messaged her on Instagram (she didn't have a phone and I had no idea they could message on Instagram through their iPods). The boys encouraged her to kill herself, backing her into a "virtual" corner. Of course, there are two ways you can endure being abused: you can take it until you're trampled to death, or you can fight back which is exactly what my daughter did. The fighting back only bit her in the ass and got her and the boys in trouble (which in retrospect I wish I would have fought). This bullying along with sexual abuse at the hands of a trusted friend changed my charismatic, sweet, funny, and talented daughter into a shell of a girl who, as a teen, struggles to get through every day without giving up. Because she was unable to control what happened to her in middle school, she is resistant to rules, authority figures, boundaries to keep her safe, and anything that takes the control away from her. My husband and I were not prepared to deal with such adverse behavior creating even more friction and mayhem at home. It lead to my daughter being hospitalized four times, attending partial hospitalization and out-patient programs, getting treatment from therapists and psychiatrists, doing neurofeedback therapy, and spending 37 days in a residential facility all in the hopes of getting her stabilized. When none of our attempts to help her worked, my husband and I needed to re-evaluate how we were going to raise her.

As I've indicated, and as some of you already know, raising teens is difficult. But when you have a teen who has suffered severe trauma and struggles with incapacitating depression, there are so many added layers to pierce, to rip through to get to the person it's protecting. Each layer has been built, from pain, like a thick scar after an injury. And like a physical injury, it never heals back to its original, unblemished skin. The scar not only protects but also reminds the recipient of how it got there, allowing the recipient to relive the pain and trauma over and over again. Even the best plastic surgeons can never make a scar completely disappear and so the recipient must live with the reminder for the rest of his or her life. The brain is no different from the physical scar on one's skin and yet, for those who don't live within the head of the hurt, they often expect that the trauma will eventually vanish and the brain will be back to its former self. But we know that is not true, unfortunately. Those who suffer a trauma live with that for the rest of their lives so it's not a matter of erasing it, it's a matter of living with it. My husband and I learned this the hard way.

We have learned and continue to learn many things about raising a teen who suffers from depression and past trauma(s). I thought I would share them with you in the hopes of helping other parents who are going through the same thing so here they are.

1. Throw all the previous rules out the window. What worked for your other children won't usually work for this one. Yes, you must have boundaries, but you also must be flexible to move those boundaries if necessary. 

2. Trust will be hard to build. It will be broken over and over again, but never give up. 

3. Don't be shocked or exasperated or reactive to their poor decisions. They will make more mistakes than the average teen. You must learn to let things roll off of you or you will make the problem worse than it was to begin with. 

4. If you invade their privacy, don't let them know by taking action for what you have found. You will lose their trust which is incredibly important and they will only do more of what you have just forbidden them to do. If you find something concerning, try to figure out why they would be doing this and see if you can redirect the behavior through open communication and understanding. 

5. Don't expect them to be excited about something just because you are, and don't be disappointed that they aren't excited. Showing them that you are disappointed that they are not feeling the way you are, only shows them how depressed they are. But when they are excited about something, make a note of it and enjoy the moment. 

6. Don't give them advice if they don't ask for it. If they come to you about a problem (consider yourself lucky, first of all), repeat back what they told you and empathize with them. Often, they don't want your help, they just want you to understand how they are feeling and why. 

7. Take care of yourself and your marriage. Having a troubled teen can put a big strain on you and your relationships. Get therapy to help put things in perspective. I recommend both individual and couples therapy to nurture both you and your relationship. Often, parents aren't on the same page when it comes to how to handle their teen so having a neutral party to help sort through both of your concerns is greatly beneficial. As parents, being on the same page, together or divorced, will create a more supportive and stable environment for your child.

8. Expect the unexpected at all times. Don't let your guard down when things are going well because they rarely stay that way for too long. I always refer to it as the "shoe drop" which happens when we least expect it. If you are always ready for that "shoe drop" you won't be as disappointed or underprepared.

9. Celebrate the good times! There will be some good times between the tough stuff that cannot be ignored. Take your child in a warm embrace and relish this victory when they have found the sun shining through a dark cloud. 

10. Don't let your friends make you feel like a failed parent. It will seem like your friends have the perfect children when compared to your own. It's only natural to compare, but when you have a child who suffers from depression or other mental health issues, you can't compare nor should you. Focus on your's and your child's journey through this unpredictable maze. Your child will grow and mature and work their way out of the maze, but until then their journey might be more complicated with more turns and dead ends. Just know that they will get to the end and when they do, you and your child will be stronger and more resilient than many who were given a straight line to the end of the maze. We all learn from our experiences. Those who encounter more of the tough stuff tend to get along better in life than those who don't.

I hope this helps those who need it. You're not alone, believe me. Depression in teens is on the rise. According to mhanational.com, almost 20 percent of teens ages 12-17 suffer from depression. In addition, 60 percent of those teens don't receive any mental health treatment. 20 percent might not seem like a large amount but if you were buying something and you got 20 percent off, you would think that was a great deal. 20 percent means we're close to a quarter of teens, 1 in 4. Again, you and your teen are not alone. Don't be the 60 percent who don't get help, don't make the mistakes that I had to make to learn the above lessons. Be proactive and make the appropriate choice that will help both you and your teen. They are not terrible teens--just teens who need a little extra help along their journey to adulthood. 

Our Teens in the Time of Covid

We've had a hell of a year. If you're still standing upright, hair intact, somewhat sane, and haven't adopted more than 10 pets since the beginning of Covid, then you're doing okay in the scheme of things. But what about our teenagers? This year has wreaked havoc on their lives and has driven them into some very unhealthy behaviors. Mental health issues among our teens are up almost 50 percent since the start of Covid, and more in teen girls than boys. Anxiety and depression along with negative changes in their sleep and aggressive behaviors have reared their ugly heads as our teens have been required to stay away from their friends and the activities they love.

Teenagers are primed to seek independence from their families at this stage of their lives. It is a time when they find their way in life, discover who they are, and who they want to be. But with Covid, there is no time for independence, hanging out with friends, playing those cherished sports, finding those special loves, being absolutely silly, or even a little reckless. Instead, they are trapped. Even worse, they are trapped with their parents and fear of the unknown. In addition, they are disconnected from their friends and possibly feeling stress from their parents. So what now? Where does a teen go? What does a teen do? Well, if you think your teen is abiding by your rules and staying at home, you're probably mistaken.

Teenagers are now finding a way to escape through vaping whether it's nicotine or marijuana, it's an easy, relatively cost-effective way to extricate themselves from this jail that has been created by the "experts" who didn't take into account the effect their actions would have on the children of this country and around the globe. Investigators surveyed 1000 Canadian adolescents about binge drinking, cannabis use, and vaping in the three weeks before and after social distancing began. They found that the frequency of both alcohol and cannabis increased during social isolation. 32% reported using substances with peers via technology and 24% used substances with peers face to face despite the mandate (Mdedg.com). "These authors suggest that teens who feared loss of friendships during quarantine might be more willing to engage in risky behaviors such as face-to-face substance use to maintain social status. while solitary substance use was related to both Covid19 fears and depressive symptomatology" Dr. Cataletto said (Mdedg.com).

So, how do you know if your child is vaping? Sometimes it's easy to wave off the symptoms as common teenage angst, but if it's unlike your child to be angsty or on edge, or if there is a quick change in his or her behavior, you need to question why. Your child might exhibit distorted thinking and behaviors. You might notice a change in his or her personality, abnormal movements, and other abnormal behaviors. They might become irritable and aggressive if they are going through withdrawal.  You might even notice interpersonal problems with friends and family as well as physical and psychological issues.

Some other facts about vaping from flavorshookkids.org. 97% of kids who vape use flavors. In the last two years, vaping has increased by 218% (that's a staggering number!) among middle schoolers and 135% among high schoolers. Teens are nearly 7 times more likely to vape nicotine than adults. Marijuana vaping among youths increased by 58% in a single year. All this seems very scary and Covid is only making these numbers jump.

There are many treatment options for Substance Use Disorders (SUD) or Addiction. But as a parent of a teen, the most important thing you can do is create an open and non-threatening line of communication with your child. Getting mad that they are vaping is not going to help the situation, it's only going to send your child running to the substance that you want them to so desperately quit. Find out why they have turned to vaping. If they are not willing to open up to you, see if they would be willing to talk to a therapist or counselor. I can't express enough how important it is to allow your child to talk about what is driving them to turn to vaping. Unfortunately, unless your child wants to quit, it's going to be difficult to get them to do so. Even if you forbid them they will find a way to vape. But if they do decide that they are willing to stop they will probably need help depending on how addicted they are to the substance they are vaping. Here are the options:

• Hospitalization for medical withdrawal
• Therapeutic communities
• Outpatient medication management and psychotherapy
• Intensive outpatient programs
• Residential treatment
• Multi-aid groups
• Self-help groups

I'm not here to scare you, only to open your eyes to what is happening to our teens and how we can help them as they try to navigate through this tough world that has been made even more difficult by Covid. I can't imagine being a teen during this time--they have lost more than a year of their childhood, a very important time of development that just might come back to haunt us years down the road. Let's try not to cover our eyes and pretend that all this will go away because it won't. Let's be proactive and try to guide them as best we can. Let's get them the help they need now, not years later when the damage is already done. And let's not forget to take care of ourselves. It's always important to keep ourselves afloat so that we can keep those around us from drowning.

When My Son's Therapist Told Me, "It's Not Your Fault".

 Mom guilt. It’s that voice that follows me around like a whiny toddler, constantly talking. You could do better. Why did you handle it that way? Shouldn’t he be reading more? Aren’t they on screens too much? Then the boss statement: You’re a bad mom. It’s your fault.

I’ve struggled with guilt for as long as I can remember. As a child, a minor mistake would lead to beating myself up for weeks. My parents never made me feel this way; maybe I was born with an overactive conscience, stoked by my old-fashioned fire and brimstone Catholic Church and school. I’ve worked on (and am currently working on) guilt with a therapist. According to her, I am an empath. I have an excess of empathy, and while a good quality, having a lot of empathy can lead to being taken advantage of and feeling guilty when you can’t meet the needs of others.

Now that I’m a parent, the guilt has adopted an edge of urgency and linked up with preexisting anxiety. After all, what has higher stakes than having responsibility for another human being’s life, upbringing, well-being, and future? What if I’m screwing up my children’s lives? If I listed all the reasons I feel guilty in parenting, this would be a novel instead of a blog post. I am a special needs parent, which (and I can only speak for myself) brings the guilt to a whole new level. The six-year journey to find an accurate diagnosis and treatment for my oldest son filled me with self-doubt and self-blame. As it turned out it was a medical problem rather than a behavioral one. I learned from this experience to trust my own instincts and most importantly, trust God. This is a lesson I’m still learning, though.

In addition to two kids with special needs, I also have my own set of mental and physical health problems, leaving me feeling like I’m slogging through Jell-o while the rest of the world is running a marathon. Some days, I’m stuck in bed and the kids spend most of their day playing video games. They’re interacting, playing online with their friends, and being creative, I reason. Still, I lay there with the guilt heavier than my weighted blanket. I make the most of the good days – I clean, I play, I homeschool – but I don’t often give myself credit for these things. While I’m lesson planning and teaching my kids, the questions run in my mind. Am I teaching them enough? Am I teaching them what they should be learning? Why aren’t my kids motivated in school? Will they develop a strong work ethic, and if not, is it my fault? When I’m playing, I feel guilty for not enjoying it. Now that my eight-year-old is moving away from pretend play, I feel guilty that he’s following his brother’s obsession with video games. If I didn’t force them outside for walks and the trampoline, they would play all day every day. I was the mom who was going to have a firm handle on screen time. Since the pandemic I feel like the term “screen time limit” is rather loose in our house. Excessive screen time for them leads to excessive guilt for me. Of course, there’s also the questions that come with having children with special needs. Is it wrong to medicate? What will people think? Should we have medicated sooner? Is he getting enough therapy? Too much? Is it my fault is behind in reading? Is it my fault?

I had a conversation with my youngest son’s therapist around Christmas time. After discussing E’s ups and downs, she asked, “How are you doing?” She knows I struggle with depression and she’s well aware of the extra stress special needs parenting (parenting in general, really) bestows. I told her a little about the parenting guilt weighing me down. I’ll never forget what she said.

“Just because your children have struggles doesn’t mean you’re a bad mom, and just because you’re telling yourself you’re a bad mom doesn’t make it true. I want you to change the narrative on this. You’re telling yourself it’s your fault, and it’s not your fault, Kat. It’s not your fault.”

I was glad we were on the phone so she couldn’t see my eyes tear up. I needed to hear those words. You see, in the past I’ve felt blame directed at me by previous therapists.

“Do you display a lot of anxiety? Do the kids hear you sort of fretting? Kids can pick up on the anxiety temperature in the room even when it’s subtle,” one therapist told me. What I heard was, “It’s your fault.”

“Is there a lot of talk about depression in your house?” another asked me. “Like, does he pick up on it a lot?”

These are just two examples. My conversation with E’s therapist that day reminded me of the time A’s current therapist told me, “In my experience, the parents who’s fault it is are not the parents who bring their kids to therapy.”

I’d like to tell you than the words, “It’s not your fault, Kat”, a salve to my psyche, corrected my thinking and sent guilt packing. Of course, it’s not that easy, but I do recall those words when I need to, keeping them tucked in my arsenal to battle the guilt. Chances are, I’ll never stop wrestling with guilt. It’s not all bad; guilt can nudge us in the right direction when we’ve slipped up. But excessive guilt only tears us down, makes us feel inadequate, and tempts us to give up. After all, if we suck that badly, why even try to do better? What I’m learning is to give myself more grace than criticism. I am not a perfect parent. I make mistakes, fall short some days, and don’t always handle things the right way. But I’m still trying. I’m still showing up.

If you’re a special needs parent and even if you’re not, if no one has told you, I want you to know it’s not your fault. Some days your best will be a clean house, a home cooked meal, and a family game night. Some days your best will be a Minecraft marathon and meals out of a box. It’s all okay. At the end of the day, if you love and care about your kids and make the best decisions that you can with the information that you have, you’re a good parent. You’re a good person. If your kids struggle – with mental health issues, behavioral problems, or regular life stuff, please know that you’re doing the best you can. You’re not alone and it’s not your fault.

Just Yesterday

 

“I’m too old for that, Mom,” my youngest son said when I suggested a game of pretend play we enjoy together.

“But you weren’t too old for it yesterday,” I said. It was true; literally just yesterday we’d played the game, giving different voices to stuffed animals and deeming them good or bad guys.

“Well, I’m too old for it today,” he declared.

I felt a pang. Believe me, there have been times, in fact just yesterday, when I’ve become bored and restless with the hostage situation that pretend play often becomes. The constant “Mom can you play with me,” and “No, keep playing,” when I so much as go to the bathroom can be wearing. Yet was this the last time? Was pretend play really ending? Although I enjoy spending time with my children and I’m fairly good at enjoying the moments, seizing the day, and all that, pretend play can become monotonous. The pressure to entertain is real. Some part of me has been waiting for this day – the day my children didn’t crave quite so much pretend play. Even my eleven-year-old will still occasionally humor me with Mrs. Antbottom – a game I invented when he was five. It’s infrequent now, though. But we’ve found other ways to connect. We watch shows together, have long talks, and make videos. With E, though, I thought I had more time. I mean, he’s eight.

As our children grow, we pay a lot of attention to the firsts – first smile, first steps, first day of school. Living with autism, E’s first are that much more hard won and celebrated. The lasts, though; the lasts I’ve never been prepared for. Often, I don’t even see them coming, but it’s usually long before I’m ready. The last time I nursed E, I didn’t know to savor each little swallow and his little fist against my skin. I didn’t dwell on the solid weight of him in my arms. If I’m being truthful, I was probably distracted. That’s normal. But, oh, I wish I’d know. I wish I’d lingered – stared into his little face. I didn’t know it would be the last time I’d nurse him. I didn’t know it would be the last time I’d nurse, period. In fact, I assumed he wouldn’t be my last baby. Three miscarriages followed after E, and we finally decided we were content with two.

I’ve made peace with this decision, I think. Most days, I think I have. Still, every one of E’s birthday brings with it an onslaught of bitter-sweet emotion, because each birthday is a last. December 10^th, 2020 was the last time we’ll celebrate an eighth birthday. For some reason, I didn’t expect the strong emotions arriving on the eves of birthdays.

E is growing more independent each day. This is a cause for celebration for a neurotypical child, but there’s an extra level of elation when a child is neurodiverse. I’d be lying, though, if I said growing pains don’t come with levels of loss. Last week when I picked E up from his homeschool co-op I ran into the building to use the bathroom.

“Oh my gosh, Mom,” he said when we got to the car, “why’d you come in the building? That was super embarrassing.”

My thought was, already? It seems like just yesterday I couldn’t leave the house without peeling toddlers from my leg, driving away with guilt even though I knew they’d be fine. Just yesterday I’d get an extra-long hug and a wiped away tear at school drop off. Now, he’s embarrassed by me. Normal? Yes. Easy? No.

At Christmas, he wanted every Hot Wheels set ever invented. Now, he plays with them less and less. Is pretend play really coming to an end? Maybe he was just having a “too cool for school” day. Maybe he really is moving on. It happens, even if it is sooner than I accepted. It’s not that he needs me less that’s hard; it’s that he wants me less.

I won’t be the sweet grandma in the grocery store warning you to “enjoy every moment”. It’s not possible, in parenting. I will say that slowing down the precious moments is like harnessing the wind. Sometimes they seem endless – until they’re in our rear-view mirror. While we’re busy focusing on the firsts, let’s allow ourselves both celebration and nostalgia when the lasts come.

I know as E grows, I’ll continue to celebrate his milestones. He’s my last baby, so I’ll also cling that much harder to his lasts. Still, I’m excited to witness the person he’s becoming, even if my stuffed animal voices have been downgraded to “cringy” category. He’ll come back around, and as he grows, we’ll find new ways to connect and spend time together. The lasts will come, but I have to remind myself that every last is a new first.