Dear People Who Do Not Have a Child With Disabilities…

I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.

I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.

I’m not speaking here of the jerks, the people who say things intended to be mean. Those people are heartless and lost and bummer for them because how sad, to live in a world that has so little kindness in it. I’m talking about ordinary people, the well-meaning man at the grocery store, the group of friendly acquaintances at church, and even the best friends who, when face-to-face with the parent of a child with disabilities, don’t know what to say.

If I sound at all bitter anywhere here, I apologize. I have no high-horse on which I may stand. I said some of these things before I became a parent of a child with disabilities.

Any bitterness that comes through is only a result of the incomplete job I have done so far in letting go of the anger and disappointment that engulfed me in Carter’s early years. If someone had told me these things before I had Carter, I would have tried very hard to listen and learn, and I know that when I said these things I meant no harm. In fact, I believed I was helping.

With those caveats in mind, here is a long list of things we parents of kids with mental/emotional/social issues hear often and that hurt us, and a much shorter list of things that I wish I had heard back in the years when life was all crisis, all the time.

What you said: God never gives us more than we can handle.

What we heard: You’re fine. Quit whining.

We’re not fine. Also, it is very dangerous to bring God into conversation with a person whose faith you don’t know intimately (and sometimes even then). We bring God to these conversations by bringing kindness. We bring God by seeing, hearing, and connecting.

What you said: He seems fine to me! Or, All kids do that!

What we heard: You are a very dramatic person and you should get over yourself. Also, you are very likely a huge liar.

If you said this to me now, I would raise my left eyebrow to you and make a mental note never to discuss anything related to Carter again. Back when I was in agony pretty much all the time, it was like being punched in the guts. It didn’t help that I heard it often. Carter was occasionally distracted from his incessant wailing by new surroundings, new faces, and especially fluorescent lighting. Plus, I rarely left the house unless he was at his best, so people heard my descriptions of a baby who cried hours and hours on end while said baby looked around from his perch in the sling in which I wore him.

Here is a good rule for all of us when we are talking to a person in pain: do not contradict. Even if the person you’re talking to seems to be completely full of crap, acknowledge the pain. See the person in front of you, because the person matters infinitely more than the facts, and this isn’t a courtroom. Even if I had been radically exaggerating the extent of Carter’s crying, I was in pain. Even if, as he got older, I was wildly overstating the rages, the migraines, the constipation, the sleep disorder, and the despondency of his depressions, my pain was real.

What you said: You must be a very special parent for God to give you such a special child.

What we heard: We are fundamentally different. I’m not even going to try to understand you.

When I first heard this, I would imagine God sitting at a school desk with a paper in front of him, just like the worksheets we used to get when we were in elementary school. There would be a list of babies on the left and a list of parents on the right. God would draw a line from the most difficult baby to the strongest parent, then second most difficult to second strongest, etc. In my imagination, a dog (God loves dogs) comes bounding into the misty, ephemeral scene, distracts God, and oops! God sent the wrong baby to those wacky Joneses!

There was an accident, and the accident broke Carter’s brain. I don’t know why, but I know I’m not special, and I need you to see and hear me and my struggle.

What you said: You are an angel! I could never do what you’re doing.

What we heard: Hey, sounds tough. What a bummer. It’s a good thing you can totally handle it and you don’t need anything from me!

Yes, you could handle it. The alternative is…what? It’s your kid. You handle it. Not with any grace or style (no points for those things, anyhow), but you just do. Ordinary you, ordinary me.

We aren’t different, we parents of special needs kids. I promise I’m just like you. I kick ass at some parts of parenting, and I’m lousy at other parts, and I’m very ordinary at most of it. You’d be horrified if you heard a group of parents of kids with issues like Carter’s talking amongst ourselves; we use gallows humor and and talk in ways we know would alienate you, and we are very un-angel-like. We are deeply angry sometimes. Wounded. Broken.

But if you come to us and say, hey, I’m in trouble, I have a kid with problems and I think I belong in your club, we will gather you into our circle so fast you won’t quite know what hit you. We will listen to you cry and we won’t tell you to stop. We won’t tell you to be strong because we know you are being exactly as strong as you can be. We know that your need is deep and that you can’t handle this, even as you are in the midst of handling it.

What you said: Every child is a blessing.

What we heard: Suck it up, buttercup!

First, duh! Of course my child is a blessing. I love him like fire. That does not invalidate my pain. In fact, my love is causing my pain because if I didn’t love him, why would I even care?

This is the Italy/Holland/Sudan problem. In 1987, Emily Perl Kingsley wrote an essay (which every parent of a child with disabilities is contractually obligated to receive in his or her inbox a minimum of 40 times in the year following initial diagnosis) comparing having a child to taking a trip to Italy. You’re planning this lovely vacation in Italy, and if your child has disabilities, it’s like accidentally going to Holland, and it’s very different and you’re disappointed, but hooray! It turns out Holland is fabulous!

Our plane landed in Sudan, and Carter and my husband and our other children and I are dodging bullets, rapists, and starvation, praying to escape with our lives. Windmills and tulips and charming sidewalk cafes sound damn good from here. I don’t owe it to anybody to put a smile on my face and pretend my blessings are different, but just as wonderful. Yes, there are some things about Carter’s illness that have made me a better person, but I would trade it all in an instant if it meant that Carter could have his brain intact and my other children could have had a childhood that didn’t include all the crises that their brother brought with him into the world.

What you said: Your faith will get your through! Or, God doesn’t bring us to it unless he plans to bring us through it! Or, With God all things are possible!

What we heard: You’re only having trouble because your faith is crappy and weak.

Here’s the deal: my faith did get me through, or rather, God did. I was more broken by the time Carter had his second birthday than I have ever revealed publicly, and I spent long, wakeful nights in the manner that is familiar to millions of people of faith: on my knees, the holy book of my tradition open in front of me, begging God for relief for me and my family and healing for my child. I told God that if we couldn’t have relief and healing, that I would very much like a carbon monoxide leak to take us all quietly in our sleep, and if that could be arranged while Jacob and Abbie were at their dad’s and Spencer was with his mom, then that would be infinitely preferable.

I am 90% convinced that if the house we lived in at that time had a garage, I wouldn’t be writing this to you now. The presence of God in the universe doesn’t let people of faith off the hook and platitudes like this don’t help anyone except the person who says them. Glib sayings about faith are all well and good when life is swell and the sun is shining. People who are suffering need something more substantial. If you are a person of faith, we need you to live that faith by caring for us and hearing how we’re struggling.

What you asked: Did you take medicine while you were pregnant?

What we heard: How did you cause this?

This was a question someone asked me while Carter was a toddler, screaming and fretting through his second year of life. What I know now is, when people ask me questions designed to figure out how I caused Carter’s various disabilities and issues, they are really saying, this would never happen to me. And while I want to reassure you that it probably won’t happen to you, it could. Yes, you. You, who give money to charity and always wear your seatbelt and feed your family organic foods and are a very nice person who never kicked a puppy. I know that it is very, very painful to live in a world of uncertainty and fear because I live on a cliff every minute, but there are no guarantees in this life. We don’t have (will never have) answers to questions like why this childWhy our family? There are no answers to those questions, or at least none to which we have access during this lifetime.

There are dozens of variations of this question, all of them probing for a cause, seeking to lay blame on the feet of that traditional whipping post, dear old mom. When he was a baby, my friends who practiced natural and attachment parenting thought I wasn’t doing natural and attachment parenting hard enough (A baby whose needs are met won’t cry! Pfffffffft. Suck it, Dr. Sears.). My friends who practiced more conventional parenting thought I was spoiling Carter by nursing and carrying him so much. No matter which way I turned, someone assumed it was my fault, as if I wasn’t already trapped in a giant web of self-doubt and recrimination. I tried to give him away to foster care (Thank God Brian stopped me because I really do love that kid.) because I was sure he needed a better mother.

As he got older, people gave me books about discipline and my father-in-law offered to take Carter for two weeks to make him shape up. Do not succumb to this temptation. Ordinary, fallible parents do not cause serious disabilities in their children. We have not traumatized them into their problems by being human. Resist the impulse to make assumptions about a child’s parents based on that child’s behavior.

The world is uncertain and sometimes horrible, even here in middle class America where the grocery stores overflow with food and the roads are paved and talk radio churns its way ever forward. Crappy things happen to perfectly ordinary people, and most of the time there is no one and nothing to blame. It’s lousy and it feels horribly unfair; nevertheless, it’s the truth.

One note underlies all of these statements, and it is this: Please be quiet. You don’t mean to say that, but platitudes are conversation stoppers, and when we hear them, we hear you begging us, please don’t show me this anguish because I can’t bear it. I don’t know what to do and if you would be quiet I would be much more comfortable. I’m telling you this because I think most people don’t want to be saying that, but what is there to do? A friend (or family member, or acquaintance, or stranger) is in pain, and what am I to do? I don’t understand this. It’s scary. It’s weird. It’s so other you might as well be beaming me a message from Planet Zergon.

I’m going to tell you. Here is your map.

  • Listen. Just listen. Open yourself up. Yes, it hurts and it’s very scary. That’s OK. There is a person in front of you who is in pain. Don’t leave her alone with it.
  • Know that you can’t fix it. Don’t try. We have doctors and therapists and other professionals for treatment. Also, that diet/book/supplement you heard about that can cure all the problems? We’ve heard of it already. We’re on the internet while you sleep, and anyway, 26 of our Facebook friends already sent us the link.
  •  Acknowledge and affirm. Say, wow, that sounds hard. Say, oh, my God, how painful! Say, I hate that it’s so difficult for you.
  • Treat our kids the same way you treat other children in your life. Of course you should be sensitive, especially with kids who have emotional/social/behavioral issues, because many of them don’t want to be touched or may not be verbal, but in general, if you usually engage kids in conversation, do that with our kids too. Say hello. Smile. They might not respond predictably, if they respond at all, but they see you. 
  • Offer to help, but only if you mean it (people in pain are sensitive; we know when you’re saying words you don’t mean so you can feel good about yourself). My mom sometimes came to my house and gathered all my laundry baskets and every scrap of dirty laundry in the house (which completely filled the trunk of her car) and brought it all back a day or two later, clean and folded. Our friends from church occasionally brought us meals. A friend drove Carter and me to some of his appointments during the worst months because I didn’t feel safe driving alone with him. Those things meant the world to me. As much as I appreciated the clean clothes, meals, and rides, I was even more grateful to feel a little less alone in the world.
  • Send a note, a text, or an email. Parenting a child with special needs can be profoundly lonely. It’s also hectic and chaotic and we may not respond to you, but do it anyway. The world starts to feel very far away when life is all appointments, crisis, chaos, and praying for survival. Stay connected, even if it feels one-sided.
  • If you’re very close, spend a little time learning about your friend’s child’s diagnosis. There is no need to become an expert, but an evening spent learning will only make you a better listener. If you don’t know what to read, your friend will gladly tell you. 
  • Keep listening. Just show up and listen. There’s nothing any person in pain needs more. 

The Success of Love

Parental Alienation Syndrome creates a world in which the ground under our feet shifts and rolls without notice.

The success of love is in the loving. —Mother Teresa

A few days ago I read the first post I ever wrote about my two eldest children, Jacob and Abbie, and how they came to live full-time with their dad. I sat at my computer, eyes goggling half-out of my head, unable to believe I had accomplished the mental-gymnastics necessary to believe what I wrote.

Better?

Better?!?

Like hell it was better, but I definitely believed it at the time, at least at the top of my consciousness. I was mostly (sort of? who knows) convinced that Jacob and Abbie’s dad was a better parent than I; that I was, if not abusive, at least profoundly deficient.

Truth? Yes, I’ll tell the truth: in some ways, in the very beginning, it was a relief to have them gone. I missed them terribly, but at the same time, Carter was so sick that I was living far beyond the limits of my emotional and physical resources and I was stretched much too thin.

More truth? In spite of all that I believe now, and all that I am about to say, I was at my low point as a parent when Jacob and Abbie left. The things other people did and said can’t absolve me of my responsibility, and I am responsible. I did the best I could under terrible circumstances, but that isn’t the same as being innocent.

When they moved out, I never imagined for one minute that they would go away and stay away. I assumed that, given the freedom to choose, they would spend most nights at their dad’s house and just one or two (as opposed to four, as it had always been)  per week at mine. I thought they would come around a few days a week after school, or hang out with us sometimes on Saturdays.

When I didn’t see them for a few weeks, I thought they needed some breathing room, a chance to decompress from the difficulties of life at chez Jones, and so I gave it to them. This was not a decision I made lightly. I prayed and pondered and agonized, staying up late at night writing and crying. Ultimately, though, I decided to live by the credo, “This is a family. We take volunteers, not hostages.”

So while I continued to invite my kids to dinner and other family events, and kept calling them several times a week, and texted them every night to say goodnight and tell them I loved them, I didn’t push or force. I stepped back, focused my energy on Carter and helping him get stable, and I waited.

As carefully as I made that decision, it was absolutely the wrong one. What I didn’t see, the giant piece of the puzzle that I didn’t even know I was missing, was this: my kids’ dad and other members of my family were actively working to keep my kids away from me. That, combined with their anger at my genuine shortcomings, stewed in a broth of early-adolescence, created a case of parental alienation syndrome (PAS) that I didn’t recognize until it was two years entrenched.

The kids’ resentments against me grew and deepened both because adults they love and care about encouraged (in overt and covert ways) those resentments, and because they saw me so rarely (we didn’t see each other for months at a stretch sometimes), I didn’t have enough time to show them that I wasn’t the person they had created in their minds.

Starting in the summer of 2011, when I began to push hard in any way I could to have more time with my kids, I watched it happen: when they were with me more, they started to soften. Their defenses began to relax as they let the reality-mom impact idea-mom. Then, something would happen (something always happened), I would see the kids less, and the fierce, hateful, horrible words would come from the kids’ mouths to my heart again. The same words that their dad and other people spoke to them about me.

Never, ever, ever underestimate the power of a good story.

My family’s experience of parental alienation syndrome is unusual in that the alienation began long after the divorce itself. In fact, Robert and I co-parented fairly peacefully for quite a few years. Or so I believed; I know now that he wanted our kids all to himself long before he got them, and when the opportunity presented itself, he took it. If my kids’ PAS had been more typical (that is, happening during the immediate post-divorce months or years), someone probably would have identified it sooner. As it was, I flew blind for a long, long time before I knew what was happening.

My 18-year-old son and I remain fairly alienated (though I see signs of progress), but my daughter has been home with me now for several months and, while PAS will always be one of the most painful experiences of my life, I’m healing.

Having my beautiful, brilliant daughter, with her heart wide open and her mind searching for her truth, doesn’t hurt one tiny bit.

For other alienated parents, this is what I know:

When you doubt yourself, breathe deep and remember that you don’t deserve this; what they say isn’t true. Oh, I know. I know that you weren’t perfect; that you made mistakes; that you were weak and broken and you failed in ways large and small. Still, you don’t deserve this.

Don’t give up.

Don’t let them (your kids, their other parent, and any other people involved in your children’s alienation) define you. You define you. There is no solution to PAS, no sure way to save our kids or our relationships with them, but I know that living our own lives with integrity is the start.

Never live down to their expectations. Live up to your own.

You are living in the vast darkness and hope is a tiny, flickering flame, almost invisible. Oh, I know, and my heart is broken because you are in the darkness and I remember the darkness and it is so large. So endless. So damn heavy. My grief was like being chained to a line of cinderblocks that I dragged behind me.

Find love. Find as much love as you can, because you deserve love. You deserve people and kindness and togetherness and a whole, fulfilling life, in spite of the terrible hole that won’t be filled by anyone but your children. Still, surround yourself with people who care about you and who see you as you are—gifts, flaws, and all. Those people who assume that only a terrible parent could ever be alienated from his or her children should be tossed overboard immediately.

Don’t give up.

Nourish your spirit, whatever that means for you. Read good books (or trashy ones), go to church, spend time with friends, write a blog, write a journal, pray, go dancing, learn to knit, grow a garden, or take up painting, but find something that feeds your soul.

PAS creates a world in which the ground under our feet shifts and rolls without notice; we need nurturing and support and a strong spirit to survive.

Your kids do need you. No matter how loudly they say they don’t, they do. No matter what they say you did, they need you. They may not hear your words of love (though you should never stop speaking them) but they see you. That bedroom you dust and vacuum every week for your son is not wasted space; it’s an invitation. That bicycle in the garage, with its oiled chain and inflated tires, is a love note that your daughter notices every time she sees it. The phone calls they ignore, the texts they don’t answer, the gifts they return, all speak their own language.

As long as our children are alive, there is hope.

Don’t give up.

41

On the evening of Monday, January 9, I made a note on the next day’s to-do list: find a therapist so you can stop crying yourself to sleep every damn night. A few days later, I sat in front of my new therapist, J., for the first time, and told her that the task at hand was a simple one: I had to learn to live without my two eldest kids. They were lost to me, I said. I will never give up, but the chance of rebuilding a meaningful relationship with either one of them is slim to none, I told her. I am drowning in my grief, I cried.

On Thursday, February 16, I wrote another (there have been so many) post about how much I missed my kids; about how their absence felt like being suffocated in the folds of a wet carpet. I wrote about how hard I am on myself, because I couldn’t pull myself up by my bootstraps and move on, or at least pretend to move on.

In every quiet moment, I flogged myself relentlessly for my mistakes and missteps. I should have fought harder in the beginning. Maybe they’re right and I’m a terrible person. No decent mother would ever… Only a terrible mother would… How could I have let this happen? I should not have had children. They hate me they hate me they hate me.

I began each day filled with grim determination to follow J.’s instructions, to parent well, to live my life, to move out from under this weight.

It was even less fun than it sounds, but a few times, I found myself actually in my life, living a few moments in a fully present way. I turned my face toward the sun and breathed deep. I will survive this pain, I told myself. I can live with this hole in the center of my life, in the center of myself, I thought. Eventually, I will put it aside so that it does not dominate my attention.

And then, on Monday, February 27, my daughter moved home.

My daughter moved home.

My daughter

moved home.

Whatever happens in the future, in the weeks since she came home, I have become her mom again.

On January 2, Jacob called me, upset and feeling hopeless about his future. “I hate school. I suck at everything. I’ll probably end up working in fast food for the rest of my life,” he said, and I drew the card I’d been holding in my sleeve for months, waiting for just the right moment.

“Have you heard of Job Corps, Jacob? It’s for people your age. You’ll get a diploma and job training and it’s free. The students live in dorms, so you can get out on your own without having to really be on your own yet.”

And he reached out and took hold of the branch and we went to Job Corps—first for information, then for a tour, then for an official interview then three more times for I don’t even know what, and every time he asked me to drive down there with him.

Thanks, Mom. That was cool of you to drive me.

Thanks for the ride, Mom. We have pretty awesome conversations in the car.

I’m glad you took me, Mom. You’re pretty funny.

I’m happy I’m going but I’ll really miss you, Mom.

On Sunday, April 1, I took Jacob to buy all the last minute things he needed—a towel, flip flops, laundry detergent, socks—and the next morning, I drove him to Job Corps to stay. In the parking lot, I hugged him and spoke the words in his ear that I never thought I would have the opportunity to speak to him.

He hugged me back.

I love you, Mom.

On Sunday, March 25, my whole family gathered at my parents’ house to celebrate my 41st birthday. We did what my family always does—we ate a meal and told stories, except we tell stories as if it’s a competitive sport. I got gifts, most notably new eyebrows, to be installed later this week.

And all day, I was there. Fully, completely present in that house, with those people. My 41st birthday was the best birthday of my life.

I was happy.

I am happy.

 

Today, Forever

One day, a young woman (a girl, really) had a baby. The prettiest, sunniest baby of them all, he tucked so sweetly into her shoulder that she wept with joy.

The next day, the woman saw that the baby was a man, and he had made a decision. She helped him pack a bag and drove him to the place where he would start a new adventure.

She hugged him goodbye and her head tucked so sweetly into his shoulder that she wept with joy.

Walking away, the spring wind lifted her hair and she gasped.

I didn’t know it would happen so fast.

 

 

Pediatric Mental Illness? It’s Like This…

Pediatric mental illness is screaming and crying; raging and breaking things; cursing and swearing; ER trips and suicide attempts…

…and it is midnight visits from a 9-year-old who still knows how to fit into the curve I make in the bed just the way he did when he was a toddler. “Mommy, I’m so glad you’re the one who’s my mom.”

Pediatric mental illness is causing my marriage to become frayed and tattered by constant, unrelenting stress punctuated by terror…

…and it has also bound me to my husband and him to me with the strength of carbon steel forged by fire.

Pediatric mental illness is the cause of our deprivation due to living on one income: no vacations, no meals out, no new cars, and the horror and humiliation of calling on family for help when the car breaks down…

…and it is also a sense of contentment and pride knowing that, when it seemed that our flailing, struggling, violent, suicide-attempting little boy was doomed, we, his parents, were able to give him what he needed and help him back to relative stability. That may not always be true, and for so many families it has not worked that way, so we know that we are blessed, in spite of our financial suck-fest.

Pediatric mental illness is the hateful stares and nasty comments from strangers and those who do not (or will not) understand…

…and it is the vast, generous community of people near and far who surround us with love and understanding.

Pediatric mental illness is drama and crisis and terror…

…and it is also this little boy, my boy, whose heart is so broad, whose empathy is so deep, whose emotional generosity is so vast he takes my breath away. He is afraid of so many things, but he is not afraid of people in pain. He is not afraid to feel your pain with you.

Pediatric mental illness is the crumbling of our family around us, the absence of two of my children, the deep pain and woundedness in us all…

…and it is also a new understanding of what it means to be family, to invite without forcing, to choose to stay, not from obligation, but from love.

Pediatric mental illness is the utter destruction of faith, smashed around our feet and ground to dust…

…and it is the rebuilding of a new faith, faith that breathes humility into us in incomprehensible, overwhelming ways, faith that makes no false promises, faith that makes it possible for us to live with the fear.

Pediatric mental illness is the thing I would cure in an instant, no questions, no looking back…

…and still, there are gifts.

This post originally appeared at Hopeful Parents.