What You Should Know Before You Judge My Son’s Mental Illness

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About a year ago, as we were in the throes of begging a Dallas psychiatric hospital to treat our 15-year-old son, a family member made some interesting comments. In a conversation that took place on Facebook, I was accused of spoiling my child, not parenting properly and, in my attempt to obtain treatment, relying on the government to take care of a responsibility that was ultimately my own. The words were harsh, judgmental and they stung. My feelings were deeply hurt.

I engaged in the conversation to defend myself and help my family member understand the entire situation. Unfortunately, I was met with more judgment and even greater hostility. In an attempt to salvage our now deeply fractured relationship, I left the conversation.

A year has passed since that hurtful event took place, and I’ve sincerely tried to move forward in a spirit of love and grace. I believe my family member simply doesn’t understand.

But a whole year later, I woke up to another upsetting comment from my relative. Although this time the words weren’t targeted directly at me, they were just as harsh and judgmental. The hostile nature of the post and the similarities to last year’s dialogue stirred some deep emotions within me.

As I’ve been licking my wounds and processing the situation, a revelation came to me: My relative’s lack of understanding, lack of empathy, lack of compassion and false perception of my family’s situation represents the way most of our nation views mental illness.

I am blessed to be surrounded by a community of people who are supportive, empathetic and who have stepped up and stepped in to walk this horrific journey with my family. As a result, I live in a bubble. I’m protected and therefore sheltered from the harsh critics in our society.

But the harsh critics exist, even in our own families.

Through my tears and in my attempt to understand my relative’s point of view, I found myself filled with a greater desire to bring awareness, provide more education and move our society forward. I’m actually thankful my family member attacked. His words served as a great reminder: People do not understand.

And how can they?

For all of history, society has done everything in its power to sweep the issue of mental illness under the rug. No one wants to be associated with mental illness. No one wants to admit mental illness exists. Certainly no one wants to have a mental illness in their family. No one wants to be mentally ill. Nobody wants to be “crazy.”

But I refuse to walk in shame.

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Before you judge my son and our journey of treatment, know this: 

My son has a physical illness that affects his brain. He has severe bipolar disorder, which can be extremely difficult to treat. This illness is as real as another person’s heart disease, diabetes or cancer. This illness is not a result of bad parenting, too many video games, being spoiled or lack of faith. This illness is biological. It requires medication and intensive treatment. If left untreated, Cody will get sicker, will likely end up in jail or on the street and his life expectancy could decrease by up to 20 years.

My family is not alone. One in four people worldwide have some form of mental illness. Five percent of Americans have a “serious mental illness,” such as schizophrenia, severe bipolar disorder or severe depression.

Are families looking for a government handout? No. Insurance companies do not cover mental health the same way they cover medical health. In our experience, insurance companies are only willing to cover up to 30 days of inpatient treatment. For a person with a severe and persistent mental illness, like my son’s, 30 days is the equivalent of putting a Band-Aid on stage IV cancer.

No other illness is treated this way.

We’re receiving treatment through our school district. Yes, the school district. Not from insurance and not from any other medical coverage. This is the way our current system is set up. It’s our only means to receive quality care. We have fought for this treatment. The cost for intensive residential treatment that our son’s illness requires is in excess of $8,000 per month. That does not include medications. I don’t know of any family who can afford these kinds of medical expenses out of pocket. It’s not our desire to receive financial assistance, but under our current system of care, we are left with no other options. We are thankful to be receiving help. There are many families who are not so fortunate.

It’s my deepest desire to bring mental illness out of the darkness and into the light. We’ve got to change the way our society views mental illness. We must eliminate the myths and focus on the facts. I long for the day when people who have mental illnesses will be added to church prayer lists instead of being criticized and condemned. I long for the day we will be less critical of one another and more understanding, empathetic and compassionate.

Wouldn’t we be better off trying on the other person’s shoes before offering judgment? Wouldn’t it be smarter to learn the facts before we offer criticism?

I do hope you will not post anything harsh or unkind about my relative. I didn’t write this to invite any more hostility. Instead, I invite you to share anything new you have learned from this information.

How has this helped you be more empathetic and understanding of mental illness?

What can you do to bring change?

If you’re in a family that’s affected by mental illness, how can this help you educate others? Can you find the courage to share your story?

Please post your positive comments. I would love to hear from you!

A version of this post originally appeared on Bold Faith Ministries

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The Moment in the Produce Aisle That Proved the Autism Specialists Wrong

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I don’t want to eat this apple.

As I rinse the Gala apple I am disappointed. It’s surface is a dull red interrupted by an uneven patch of yellow. It’s lopsided and marred by bruises. It simply can’t compare to the shiny green luster of a Granny Smith.

I twist out the stem and bring the small, unwanted apple to my nose. I close my eyes and inhale.

I’m trying to trick my brain into appreciating this piece of fruit. Instead, the unremarkable scent has me imagining a bite of the absent Granny Smith. My teeth would break the skin, releasing tart juices onto my tongue. The crunch of each  subsequent bite would echo in my head. I would nibble off crispy white morsels until I reached the core. I would feel righteous eating such an apple, knowing how much healthier it is for me than a processed snack food.

Instead, I am feeling like a martyr. Sure, Gala apples were on sale at the grocery store, so I saved a few cents opting for this kind over the Granny Smith.  The two varieties were displayed side by side in the produce section. I was reaching for the luscious green apples when I was forced to buy the boring Galas.

It’s my son’s fault. You know, my autistic son who supposedly cannot pretend. “Lack of symbolic play skills” was one of the criteria for his diagnosis. It was one of the many things the specialists told us my son couldn’t do.

He was my shopping companion last Wednesday. He stood beside me as I scanned the Granny Smiths looking for apples without blemishes, the ones with the loveliest green curves.

I was reaching for the perfect specimen when Philip grabbed a Gala apple from the adjacent bin. He put it to his mouth and pretended to take a bite.

I had to buy this apple since Philip’s lips touched it. I put it in a bag. While my hands were occupied with this task, he grabbed a second apple and, complete with chomping sound effects, pretended to eat it. I was forced to purchase that one, too.

That’s why I’m washing an apple I never wanted. That’s why I’m taking a bite.

And it’s the sweetest tasting fruit I have ever eaten.

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A version of this post originally appeared That Cynking Feeling

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Why I’m Talking About Medical Marijuana, Even If It Makes You Uncomfortable

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Medical Marijuana. I’m just going to throw the words out there now, because for some reason they cause discomfort. And I think “uncomfortable” is a good place to start.

I watched the documentary “Growing Hope” on NBC, which is about the fight for medical marijuana for epileptic kids and now I’m having a hard time staying quiet about the topic.

It’s fascinating to me that a treatment that has shown such marked potential gets so much push back. When getting rid of seizures is notoriously difficult, and in some cases considered impossible, this drug with so much potential is being squashed by legislation.

I’m not here to debate its efficacy, or defend its long-term use, or say that I know for a fact it will work. I’m here to complain that I can’t speak to those things because we’ve yet to have the chance to find out.

I can tell you that the seizure medication Phenobarbital knocked my boys out so badly that they lost the ability to breathe or eat on their own. We spent weeks in the NICU trying to figure out what cocktail of drugs would allow them to wake up enough to go home. I can tell you that while ACTH (Adrenocorticotropic Hormone), another seizure treatment, worked nicely initially, coming off of it led to an immunity crash that my son Landon almost didn’t survive.

I can tell you tomorrow we’re going to a vision appointment because being on Sabril requires routine checkups to ensure there hasn’t been permanent vision loss. I can tell you that despite being on four seizure treatments at the time, Landon had a seizure in the night that almost led to his death just a few short weeks ago.

I could list all of the potential side effects we’ve exposed the boys to in the name of seizure treatment, but you’ll quit reading long before I reach the end. Yet, for some reason, when the word “marijuana” is involved, people get uncomfortable.

Ironically, many seizure treatment strains are made from plants that are so low in THC (tetrahydrocannabinol), which is the chemical that produces many of marijuana’s psychological effects, that they are considered hemp and don’t even produce the “high” that is causing a lot of the social stigma. But honestly, considering the extreme and known side effects of currently approved and socially accepted drugs, I find that irrelevant. We’ve known for years there is potential, yet it has been socially downgraded and politically ignored for far too long.

I’ve met a lot of wonderful people in our journey with the boys. Everyone’s story is different. But when it comes to seizures, there is a common thread — despite countless drugs, steroids, diets and surgeries, very few find success. In the end, the seizures almost always win the war. And while there is no guarantee medical marijuana, hemp plants and CBD oils will change that in every circumstance, I can’t for the life of me figure out why someone in a suit who is unaffected by it says the medical community shouldn’t give it a fair shot.

For now, I just ask that when you hear about hemp and marijuana plants, or plant-based CBD oils being used as seizure treatments, you stop picturing Jay and Silent Bob, and start picturing kids like my sons, Landon and Nolan.

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And somewhere out there, if you’re someone in power who could help advocate for the research and legislation needed and you’re still sleeping on it, understand this: I go to bed every night praying this isn’t the night a seizure quietly wins.

So while you’re “sleeping on it,” moms like me aren’t getting any rest.

A version of this post originally appeared on Mama Laughs.

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Why I Let My Daughter Struggle to Stand

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IMG_20130422_143230_361 My daughter has cerebral palsy that is immediately obvious with her stiff gait and leg braces, but I’m the mom at the playground sitting on the bench letting her play without me.

If she trips on the mulch, I don’t rush over to help; I let her stand back up. If she wants to climb up the ladder, I let her do it even if I’m sitting there holding my breath the entire time. I’ve seen every variety of well meaning people gasp as my daughter trips, then cast an annoyed glance in my direction before rushing over to grab her and stand her back upright. I’ve had to ask many people to please not help her. I’ve said over and over again: “She’s fine. Let her do it herself.”

I’m sure to the outsider I have at times appeared uncaring, however the opposite is true. My daughter never had the chance to try to walk during the first four years of her life. She spent those years in an orphanage where no one believed she could learn, so she never tried. At the age of 5, with AFOs and weekly therapy, she finally took her first independent steps. Like a toddler though, she fell often. The most important part of falling is learning how to get back up, so we spent hours teaching her how. Standing up is a hard skill to learn at 5 and 6 years old, but it’s easier to learn at 6 than 10. Time was not on her side.

So when she fell, we would fight the urge to run over and stand her back up. Instead we would encourage her to get her legs back under her body and do it herself. At first, even she was resistant to the idea of doing it herself. For years no one had ever expected her to walk or stand. It was hard!

I knew she could do it, so I insisted she try. Every. Single. Time. It would take her a full minute to get her legs properly positioned to stand up. It wasn’t that she couldn’t; she just needed the time to figure it all out. Motor planning that comes naturally to an infant doesn’t come so easily to an older, bigger child. I would sometimes assist her by holding her waist with my fingers, but I wouldn’t pick her up. The glares I got told me what some people thought of my parenting method. Sometimes I didn’t even want to go out in public with my daughter because the first time she would fall over, someone would see her taking more than two seconds to get up and rush in to help. I’d be forced to ask them to stop in what always felt like a horribly awkward moment.

But you know what? Today my daughter can stand back up almost immediately. She’s learned to tell people, “Please don’t touch me, I can do it myself.” And she does.

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She also opens doors, goes up and down stairs, gets dressed, takes a shower, puts her shoes on (and ties them!) and buckles her seatbelt — all because I didn’t give her a free pass when those things were still difficult. She’s learned that just because something is hard, doesn’t mean she cannot learn to do it. She’s learned that while having a disability may mean some things are harder, it doesn’t mean things are impossible.

Life isn’t always accommodating or fair. Sometimes there’s no easy way to accomplish things.

These days I let my daughter struggle to get her own cup out of the cabinet to get a drink. I let her struggle to load the dishwasher. I let her struggle to haul her laundry hamper downstairs. I let her struggle to do chores with her siblings. These are life skills that are hard for her now but necessary if she really wants to go to college like she talks about.

Someday she may want to struggle to learn to drive a car, or be a doctor, or cook a meal for her future spouse. It’s my job to make sure she understands she can.

The gift of learning to be independent is too precious to take away — even if it’s harder for some to open the package.

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The One Request I Ask of Parents of Typical Kids This Summer

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Dear parents of typically developing kids,

It’s been a busy summer! I see your Facebook posts about dance recitals and costumes, Little League championships and trophies and graduation parties with swimming pools. I see smiles covered with ice cream and big duffel bags packed and ready to go for overnight camp.

I want to live vicariously through your fun experiences, but sometimes it’s just too hard. Families with children with special needs like mine don’t always get to enjoy the same luxuries. “Luxury?” I hear you say. “That duffel bag will be coming home with 10 days of stinky, sweaty and dirty clothes for me to wash!” or “I had to sit through 12 dance numbers just to get to my kid’s two-minute performance!” My response? Yes, dirty clothes would be a luxury for me.

This isn’t a sob story or pity party post. Rather, I’m asking you to consider ways you might be able to include us in some of these activities. Please know I’m not blaming you for not having a child with a disability and maybe not noticing kids who are a little different weren’t always included in these events.

The next time you’re at a recital, Little League game or camp orientation, please look around to see if any children with special needs and disabilities are being included. Ask your camp counselors if there are campers with special needs involved in activities or are even allowed admission to the camp at all.

They’re all so used to hearing from special needs parents like me who want our kids to have the opportunity to be included. But maybe it would make an even bigger impact if you brought it up, too. Sometimes, just raising awareness will help bring about change for programming policies that could open the door for so many families like mine. Plus, there’s no denying that inclusion benefits all people, not just those with disabilities.

And that graduation party? Please look around to see if any students with disabilities were invited and included. I’m not bringing this up to make you feel bad. I just want to let you know what may seem like a small gesture of inclusion to you, means the world to a family like mine. Raising a kiddo with any special need can be very isolating. If we’re included, we feel accepted, appreciated and even hopeful for our child’s future. Yes, you can do all of that for us by extending an invitation or speaking to the dance instructor, coach or camp director about including all participants.

Love,

Dani, a mama bird to a sweet little bird who happens to have autism.

A version of this post originally appeared on Birdhouse for Autism.

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Please Keep Your Advice About My Son With Autism to Yourself

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My son, Charlie, has a sweet, gap-toothed smile and a twinkle in his chocolate-brown eyes that will make you fall in love with him instantly. He also has very limited language skills and a tendency to panic around sudden, loud noises. (Who doesn’t, right?) On warm afternoons, he’s inclined to strip naked in the living room if he thinks there’s even the slightest chance you’ll take him swimming, making things a little awkward when his two older brothers have friends visiting.

Now 8, Charlie was placed on the autism spectrum when he was just under 3. Thanks to a lot of hard work at home and finding the right school with wonderful and dedicated teachers, we’ve been fortunate to watch him make slow but steady progress.

I would never complain about my son, mostly because I think he’s amazing. And yet, despite this, I have friends with some professional experience in special needs fields, but limited knowledge of my son, who seem to want to offer me unsolicited advice and tell me all the things I should be doing.

One evening, I met an old friend for coffee. She’s a physical therapist who works in school districts but hasn’t seen Charlie in at least five years. Still, she wasted no time in grilling me on how he was doing.

“He’s great,” I said. “We’re really lucky he is where he is. He’s made tremendous progress.”

She stared back, seemingly unsatisfied.

“He can read short books now,” I offered.

“Yeah, but does he understand what he’s reading?” she asked, grimacing.

“We’re working on it,” I said, my grip tightening on my coffee cup.

“I know a mother with two kids on the spectrum, and she brings stress balls for them to carry while she grocery shops. It really helps. Have you thought of doing that?” she asked.

“Um, I don’t really have any problem taking Charlie to the supermarket. In fact, he loves picking things off the shelves and is a huge help unloading the cart and putting items on the conveyor belt.”

She seemed deflated but pressed on, determined to offer some life-changing nugget.

“Did you know that some of those indoor trampoline places have special times just for kids with disabilities?” she continued.

“Oh, we’ve taken him to those during regular hours and he loved it. That’s not a problem for us.”

I had to fight the urge to say, “And he’s learned to ride a bike without training wheels, and he’s trying lots of new foods and …”

Later, I thought, why do I need to justify how I care for Charlie to you? But this isn’t the first time I’ve gotten advice about my son, and I’m sure it won’t be the last.

I’m a mother who travels with stacks of flashcards of sight words in her purse, so I’m on this. I don’t allow three minutes to pass without us interacting — even if it’s just to reinforce social questions or give Charlie the tickles and kisses he loves and craves.

I choose to live each day celebrating the things my son can do. But please don’t ever mistake that for denial or ignorance; I’m painfully aware of his limitations. My heart breaks when children ask him to join a game of tag in the playground, and he can’t quite understand what they’re saying, let alone participate. But I rejoice in the fact they asked him at all. To his peers, at least for the first few moments, he was just like them. Several years ago, that would never have seemed possible.

The word autism can be big and terrifying for some people, and I know on some level my friends think they’re helping. They’re trying to impart some wisdom they’ve picked up along the way. But just as I wouldn’t presume to give unsolicited suggestions on how to guide their typically developing children, I’d rather they refrain from offering me advice on how to help my son, especially when I haven’t asked for it.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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