Eight years ago I didn’t know if he’d live through high school. Depression and rage were so much a part of our daily life it was hard to imagine a day without it; a future for him, for any of us. Our dreams for him always included a happy, joyful life, but that didn’t match our reality eight years ago.

We had to admit him for his safety and it turned out that was the right path, at that time. We took many, many paths along that 11 years to get to that point. He’d seen countless counselors, a behaviorist, a psychiatrist and a lot of home spun therapy (Gage and I recently came across a story of animals that we made using stuffed animals of his that finally broke through the heartache and rage to the deeper heartache and healing). We had some understanding friends and family members, and his school, wow, they tried day after day to reach him and make an impact and they really did.

Unlike with failing kidneys you need dialysis or a transplant, with mental health, you’re never really sure. It’s a leap of faith and a lesson in persistence to try treatment after treatment until something is right for you, for your body, for your life style. Finding treatment for our son, was a bit like driving in dense fog. Sometimes we saw a little bit ahead and sometimes we didn’t but we did keep driving, ever so slowly.

So many things have helped him become stable… time, maturity, a small school, counselors, caring educators and his resilience. Things can get better. Keep driving. You are not alone. National Suicide Prevention Lifeline 1-800-273-8255 24/7 and for Crisis Texting.

The story over the years, starts here, Driving Away.

On this Day of Suicide Prevention, I remember

Four Years Out

Five Years Out

Six Years Out

Seven Years Out

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It’s like the Universe knows it’s been a while since a Holiday urgent care or ER visit for us, we ended up doing that very thing on Dr. Martin Luther King, Jr.’s birthday. Apparently lots of Influenza A out there on the Holiday. Our insurance company helpfully recommended we visit an affiliate location and we were in with the within 30 minutes of filling out the paperwork. She was swiftly swabbed and there we were, facing the literal dreaded flu for anyone with a compromised immune system, and maybe more so dreaded for my girl, who suffers from anxiety.

“Am I going to die?”

My daughter didn’t need to see anything else to come up with that question. All you have to do is watch the local or national news to know that the flu is running rampant through the country. Or you can do what I do during flu season and look up the updated CDC map that covers your state. Today, don’t bother looking, “widespread” is pretty much what all of us in the U.S. are facing, US Virgin Islands, Puerto Rico, Guam, Hawaii, and DC notwithstanding, this week.

“No, you’re not. We’re here early. I’ll call the transplant team and there will be a plan if you get worse and we’ll admit you to the hospital if you don’t start improving right away.” 

I say that as calmly as I say all of the statements I do regarding her health and physical well-being, and I state it with certainty. I repeat it. We do not mess around with either of our children and their immune systems and we’re aggressive with things that could wreak havoc on their bodies, their kidneys.

Their weak immune systems are the payoff we get for them to live free from a catheter inserted into their body hooked up to a dialysis machine to keep them alive. We’re proactive and aggressive with any diagnosis and treatments, specifically because we want our kids to do the same in the years to come.

“But am I going to die?” She asks.

This is the result of a too active anxiety mind, the news of deaths due to preventable diseases and illnesses, a weakened immune system and reports that antivax people avoid any and all vaccinations. Families like ours depend on others to stay safe with vaccinations so our kids are safe. When you don’t get a flu shot (yes, we also know all types of flus are not covered with the flu shot each year but it is better than nothing), it puts others – it puts my kids’ lives –  at risk. Get vaccinated. If the situation were reversed, our family – and my sweet daughter who asked if the flu is going to kill her – would absolutely do it for you.

As a parent, we can’t really know how a report, or something our kids overhear us speaking about may impact them. We can only know that it does, when it happens. While I can do everything in my power to dispel and validate her thoughts about what may happen to her because of her immune system or transplanted kidney or diseased liver, I can’t do much but try to help her finds ways to cope. She will always be the only one who can deal with it in her way inside of her, and hopefully a healthy way, if we can help get her the tools from which to pick.

Having the hard conversations is what we do, we parents of kids who live life differently. I wish I could say I was shocked about my kid talking about death so pointedly, but I am not. I’ve been having these types of talks for a long time and I’ve gotten less shocked, more calm, less upset and more thoughtful. I have learned to help carry the burden, the weight of what I can, in hopes to ease theirs. I hope sometimes what I say resonates with her more than the gravity of her situation can sometimes do in the living of her life.

“No, you’re not going to die. Not today. You’re going to have a long, beautiful life.”

1-800-273-8255  Hours: 24 hours, 7 days a week

Website: www.suicidepreventionlifeline.org

This morning, before noon, my husband and I sat next to our son and carefully looked over 20 trade schools on an Excel spreadsheet. We had been meaning to do it for about a month, but you know, life gets in the way.

We selected down from 20 to 10 and from 10 to five… we have five schools on his target list for what he wants to do, in short, to fix things. In long, to learn everything he can about electronics repair. Imagine our shock as we are helping him navigate this next chapter of his life. It wasn’t so long ago we didn’t know if he would survive age eleven.

In 2010, he was suicidal. We had to commit him to a hospital for his well-being. To keep him safe on that day, and one in 2016, where we also committed our daughter, were arguably the hardest days and the best days for their lives besides their kidney transplant days. Both of those days, in 2010 and 2016 marked the days of the beginning of mental health help that finally helped.

It didn’t always look that way. For months with both of them their despair was palpable to anyone who shared their space. Their anger and rage was targeted at anything and everything but mostly their father and myself. Anything would set them off, and their rages and screaming sessions would last hours. One to three hours a night until finally, the welcomed collapse from exhaustion for them, then tears from us.

Proper mental health treatment helped, but it wasn’t a quick process. The wrong doctor for him, who was against committing him and slow on providing medication (and possibly not a very skilled pharmaceutical doctor in hindsight) and for her, over several months, trying and stopping several medications until our amazing doctor found the right ones.

Our family has been through many horrific events. They’ve shaped and morphed out family into something we didn’t know we could or would be back when we dreamt of having a family.

Mental health treatment sometimes doesn’t work the first time. Or the fifth. Sometimes is a mixture of medication, therapy, alternative treatments (food changes, brain mapping, yoga/message, hypnosis, or anything else that has the potential to work) over months or even years, as with us. Our daughter has tried several medications, has a message monthly, and is currently doing some brain mapping to deal with the anxiety that causes a lot of her issues.

What I know is this… you can’t find out what works and how stable life can be if you are gone. Your loved ones can’t try to help you if you’re not here; if you die. Don’t give up on their help and don’t give up on yourself. If you’re brain is telling you you’re unloveable – like my kids’ brain chemistry lied to them about – please, you have to  know it’s a lie. It may be the biggest of all of the brain lies. Stay with us. Fight against the lies that tell you the world would be better without, because it’s simply not true.

National Suicide Prevention Lifeline

1-800-273-8255  Hours: 24 hours, 7 days a week

This summer has been a big one for Schuyler. In the spring, she got signed up to do a summer employment internship for young people with disabilities, and after some false starts, Schuyler began her paid internship at a CVS in our town. I think it’s important to mention the company by name, because more and more businesses are opening their hiring practices to people with disabilities, even in a current political and social environment that would not seem to place a value on the societal and professional contributions of the disabled. It’s a slow process, and employment options for people like Schuyler are still extremely limited. Companies who participate in these kinds of programs are doing good work for humanity. So thank you, CVS, even though your pharmacy screws up Schuyler’s meds kind of a lot.

Schuyler enjoyed her new proletariat experience, that I can say for sure. Her supervisor reported that she was always positive and worked hard, and was genuinely sorry to see her go. Schuyler learned how to do things like fill out a time sheet, and she has now been officially inaugurated into the Society of Holy Crap I Have Money Of My Own. She showed up every day dressed professionally, and she even made at least one friend whom I suspect might endure past the duration of the internship. She never had a customer get nasty with her, and no one made fun of her, at least not that she was aware of. (I hate that I needed that qualifier, but there it is.) No matter how much the program might have fallen short in some areas of inclusion and actual job training (which it did, regrettably), it got Schuyler excited about the future, and that’s no small thing.

This week, she attends summer percussion camp. Next week, full marching band camp begins, and a couple of weeks later, school starts. This will be Schuyler’s senior year in high school, so everything she does will be one in a series of “the last time I’ll get to do this” experiences. For Schuyler and kids like her, much more than for their neurotypical classmates, this is daunting. Schuyler’s future remains clear and imaginable, if not entirely predictable, for maybe ten months. After that, it’s a wall of creeping mist. Does it conceal rich and meaningful adult experiences, or is it a Stephen King kind of mist full of fear and danger and face-eating monsters? Your guess is as good as mine.

This is always a strange time of year for me because it was at the end of July in 2003 that Schuyler was first diagnosed with polymicrogyria. Her monster wasn’t born that day, but it was revealed, and the great and terrible red line of BEFORE/AFTER was drawn in the narrative of our lives. Everything that came before that afternoon at Yale was prelude for the lives we were all three destined to live. The AFTER hasn’t been even mostly bad, but it has been difficult and complicated. I’m always aware of the anniversary of that day and mindful of how much has changed and how many great truths have been revealed in the last fourteen years.

I don’t know what the next few months are going to look like. There’s a lot of change waiting to pounce. I only know that Schuyler is as ready for it as she can be, given the million-and-one variables at play in her life and in her heart. I like to think I’m ready, too.

Let’s talk about rape culture and the disability community.

The topic makes us as a society uncomfortable, and it makes us as individuals EXTREMELY uncomfortable. For parents of kids with disabilities, this is a subject that slips under our mental and emotional doors like smoke. It hits us hard because we understand exactly how vulnerable our children are, and we’ve experienced how hard the world can be to our kids and to the adults they will become. It keeps us up late at night because we understand, better than anyone and certainly better than the people professionally charged with the protection of those we love most in the world, just how vulnerable our kids are.

For something that receives as little attention as it does, the problem of sexual violence committed against members of the disability community is absolutely astonishing. The studies are revealing, in ways that stagger the imagination.

And here’s the “up at three am staring at the ceiling” one:

• More than 90% of people with intellectual disabilities will experience sexual abuse of some kind in their lives, and 49% percent will experience ten or more sexually abusive incidents. 68% of girls and 30% of boys with intellectual disabilities will be sexually abused before their eighteenth birthday.

Ninety percent of people with intellectual disabilities will be sexually abused at some point in their lives. NINETY PERCENT. As the parent of a daughter with a disability, I have a difficult time processing that number. Ninety percent feels very much like a sure thing. Ninety percent is a thing you bet on every time. Ninety percent is quite simply an unacceptable number. For ninety percent, we should be marching in the streets. For ninety percent, we should be burning things down.

But we’re not. The statistics for sexual abuse in the disability community, like the unemployment rate among disabled job seekers, are outrageous, literally. They deserve outrage. Not empathy, not charity or pity or thoughts and prayers, but actual outrage. These facts are outrageous most of all because they don’t originate with the disability. Schuyler’s little monster makes some experiences harder for her, but it shouldn’t make it more dangerous for her to walk in the world without being sexually assaulted. Her polymicrogyria shouldn’t make her more vulnerable to predators.

It shouldn’t, but of course it does. People with intellectual disabilities are uniquely vulnerable to sexual violence. They may not fully comprehend what is going on. They may not be able to fully communicate what has happened when speaking to the people they love and trust. They may not understand that they have rights and that what is happening is illegal. And since those assaults are most often committed by trusted professional caretakers or, and this is the worst, by trusted friends and family members, victims with intellectual disabilities may never even report what has happened to them. And when they do report, they often face credibility issues with law enforcement. When it comes down to “he said, she said”, victims with disabilities, particularly intellectual and developmental disabilities, have a difficult time being taken seriously.

We live in a society where rape culture isn’t just a thing, but a gigantic thing. It’s a monster that we feed constantly, with our popular media and our societal privilege and an institutionalized misogyny that permeates our judicial systems and is now entrenched and protected at the highest levels of the executive. I wish I’d done more in the course of my life to fight that culture of rape and misogyny. I wish my commitment to fighting it had begun in my heart because I’m a human being and not because I’m the father of a daughter. Like the roots of my disability advocacy, it’s a shitty reason for me to care. As a privileged white male in this country, I’m the problem. I should have been talking about this for decades. I have a lot of catching up to do; many of us do.

Where that rape culture intersects with the disability community, there are deep wells of shame that we all own. As a society, we don’t talk about sexual assault where it concerns the disabled. But let’s be honest. As a society, we’re just not comfortable talking about sex and the disabled. We don’t want to deal with that topic at all. We like to pretend that people with disabilities, particularly those with intellectual disabilities, simply aren’t sexual beings. We consider them children, without agency and forever pre-adolescent, and so we deny them one of the very core fundamentals of the human experience.

It’s only been a year since the inexplicably popular and irredeemable comic Gary Owen caught heat for his televised comedy routine in which he mocked an intellectually disabled relative. (See “The Very, Very Worst”.) That situation got a great deal of attention within the disability community but not much elsewhere. Why was his “they’re having sex, isn’t that HILARIOUS??” shtick such an easy laugh, where making fun of any other vulnerable group having relationships wouldn’t be? Imagine that joke told about a gay relative, or one of another race. Imagine laughing at any other vulnerable group in our culture simply because they were involved in a consensual sexual relationship. And do that while keeping in mind that having a disability is the one truly intersectional condition in our society. Disability transcends everything else, and that includes wealth or privilege.

As the father of a daughter with a disability, the question of Schuyler’s safety in a world with that NINETY PERCENT stamped on it is paramount to me. It’s also complicated by the fact that many of the interactions she has are with other people with disabilities, including the young man with a developmental disability from her school who recently sexually harassed her. Yeah, that happened. It’s complicated, because I’m sympathetic, and at the same time I’m not. I’m reasonable and detached, except of course I’m absolutely not. I want this boy to learn, I want the world around him to teach him. I want the men in his life to guide him, and for the impressions he takes away from popular culture to stop telling him how cool it is to subjugate and objectify women. I’d like for him to become a better young man, but yeah, I’d also like for him to never speak to my daughter again. Go be better, someplace else. Yes, I’m as imperfect an advocate and ally as you’ll find.

I want to be a better advocate, and I desperately want to be a better father. I don’t always know how to do that, and in this area maybe more than most, I’m a little lost. I want a world in which Schuyler the young woman walks in safety and surrounded by respect, and dignity. I want Schuyler the disabled person to have opportunities in a truly inclusive society, not just in education or employment but in the very basic pieces of her humanity.

I want the rest of us to do better, to be less horrible. I want Schuyler and her friends and her sisters to walk unafraid and undiminished. I want our silence in the face of intolerable sexism and ableism to taste bitter. I want our inaction to hurt in our bones.

I want Schuyler’s world to deserve her.