Welcome to Siberia

Welcome to Holland, a pretty famous essay about having a child with a disability, likens the experience to ending up in Holland when one has booked a trip to Italy. While it contains some important truths, it doesn’t really capture the disability story I’ve been living, one of parenting a child who develops serious mental health issues during adolescence . So, I wrote my own version. I call it, “Welcome to Siberia.”

Having a baby is like moving to a fabulous foreign country–say, Italy. Sure, it takes a while to get used to living in a whole new land, but…it’s Italy. There’s sun, and good food, and beautiful things to see, and everyone loves bambinos.

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Years pass, and life goes along as life does, largely without notice, but one day you and the rest of your family get on a train that doesn’t stop where you expected to get off.

You tell yourself that it’s no big deal and that you’ll just exit at the next stop, but the train moves past it, too. You’re not sure of what to do. You’re not even sure if you should worry. I mean, you’re all safe, and you’re in Italy of all places.

But stop after stop ticks by, and the train is picking up speed, and you start to feel a bit panicked. You look around for a conductor, some kind of helper, but no one seems to know what’s going on.

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The train keeps going, and because you’re so stunned by the unexpected weirdness of what’s happening, it takes a while for you to register that the train is on its way out of the country, out of your country, your beloved Italy. It’s just so unbelievable. I mean, how did you all get trapped on a train to…where is this train going anyway?

You travel through terrain you think you’ve maybe read about somewhere, but it’s nowhere you’ve ever wanted to visit, and at some point (you don’t know where, because you still don’t know where the hell you are), you let go of your denial-fueled belief that someone is going to fix this obvious mistake and help you get back to Italy right away. You become angry, and sad, and in quiet moments when the kids aren’t looking you admit to yourself that you are very, very scared.

Just when you finally accept that you may never return to Italy, the train stops. The doors open, and you step into…Siberia.

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The first thing you notice is that it is really fucking cold in Siberia.

The kids start whining and you know that none of you are equipped for this place. You don’t even have warm coats. Your co-parent (because parenting has become the defining element of your relationship to each other) shoots you a look that says, “How in the hell are we all going to survive this?

No one welcomes you to Siberia, but after awhile you see that there are some other people here. You’re desperate for information (Why are we here? How do we make it in this place? How do we get back home?), but you’re also afraid to approach them, afraid to get too close, afraid it might mean that this exile is not just some horrible dream.

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You’re lonely and you want to talk to someone, but you’re also not sure you really want to hear what any of these people might have to tell you. You know it’s not rational, but on some level you think that if you accept them and this place, it will seal your fate, make it impossible for you to leave. And you really, really want to leave. You make small talk, but your heart’s not in it.

Your heart is back in Italy.

You send letters and emails home, trying to explain to friends and family still there what happened to you. Some you don’t hear back from, and some send messages full of advice that only works in Italy.

Clearly, they have never been to Siberia.

Some want to understand and help, they truly do, but you can’t find the words to convey how sharply a Siberian wind can cut, how empty the sky can feel. Some tell you it must not be so different from being in Holland (even though they’ve never been there, either), and you kinda want to snap at them,

“Do you know what I’d give to see a goddamn tulip right now?”

But you know they mean well and they’re trying to help and it’s not their fault you’ve been sent to this godforsaken place where you’re pretty sure tulips will never, ever grow.

It’s hard to keep trying to explain, and you’re more than a little afraid that everyone back home is wondering what you did to make this happen to your family (because that’s what you are wondering, too), so you begin sending messages with general pleasantries instead:

“The sky was blue today.”

“It was nice to have some warm soup.”

“The wind has died down a bit.” 

Your Italian friends miss you, but they seem relieved when it seems that you’ve begun to adjust. You still love them and they love you, but you know the relationships probably can’t be quite the same, what with them there and you here, in Siberia.

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Eventually, just as when you moved to Italy, life goes back to going along as life does, and you become accustomed to your “new normal.” Still, you really miss Italy sometimes. You wish you’d appreciated more of it while you were there. You wonder if it would have been easier to have lived all those earlier years in Holland and never known Italy. You wonder if Holland is where you’re going to end up, and you’re just on this arduous detour through Siberia because that’s the path for parents who got to live in Italy first.

But mostly–because you now understand that you will never return to Italy and that anyone can be exiled at any time, with no warning–you allow yourself to let these questions go, and you surrender to Siberia.

Gradually, your expectations change. Your dreams change. You become grateful for different sorts of things–like, that you still have dreams and expectations. That although the landscape’s beauty is of the desolate kind, there is beauty, and you do see it.

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It’s only then you realize that even in Siberia, there are seasons. There are days, weeks, even months  of relative warmth, and damn if there aren’t even a few tulips after all–flowers more lovely to you than any that ever bloomed in Italy, not in small part because they are rare, and because they’ve blossomed where you once thought nothing delicate could grow.

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Ball Crawl Photo Credit: Rita Ott Ramstad
Moving Train Photo Credit: Cellanova via Compfight cc
Winter Tundra Photo Credit: Photo Credit: dration via Compfight cc
Boots Photo Credit: sibwarden via Compfight cc
Mail Photo Credit: Ian Broyles via Compfight cc
Siberian Beauty Photo Credit: sidnegail via Compfight cc
Siberian Tulip Photo Credit:  http://www.plantarium.ru/page/image/id/56178.html

45 thoughts on “Welcome to Siberia

  1. Hillary Hyde says:

    Rita:
    This is oh so beautiful and very helpful for me to understand your experience. I think your metaphor is spot on.
    I would like to take a trip (but selfishly, only a trip) to Siberia so that I could step into your word and help be your community there. I am fortunate to live in Italy – but also know that a train can come at any time, for any of our families. Love to you.

    May I share your description?

    • Rita says:

      Thank you, Hillary. I wouldn’t wish a move on anyone, but visitors? Yes, please. Especially you. And feel free to share if you think it will be helpful to someone else.

  2. Lisa says:

    I haven’t written on my own blog about this, but yes, I understand this. I’d love to talk to you off-line about this (although you’d be more helpful to me than I to you, since mine is much younger and we just got on the train.)

    I’ve always felt that Welcome to Holland was written by someone really far along in their journey. Like, thirty years in. They’ve come to acceptance and it skips over all the rage and panic. There’s a better one called Welcome to Amsterdam International (you can never leave!) that I think gets a little closer to the amount of panic and WTF do I do now?? that comes along with the program.

    I think it is key to find a buddy in the same situation. I have a friend whose child was involuntarily removed and committed to a mental hospital at the age of six and has numerous issues since. We get together at least once a week and discuss treatment options, what’s going on, how to deal, etc. Because Siberia is lonely when your only friend is your significant other.
    Lisa recently posted…Emerald green: painting everythingMy Profile

    • Rita says:

      Welcome to Holland was written from the vantage point of the long view, more than 20 years after her son was born with Downs. And thank you for pointing me to Amsterdam International; I’d never seen it and so appreciate it. I think it’s a much-needed companion to “Holland.”

      I agree with you about having someone else. Not too far into our journey, I discovered that a colleague was ahead of me. Talking with her, even just occasionally, has been so good for me. It just helps to talk with someone who gets what you’re going through.

      Yes, let’s talk offline.

  3. Kathy says:

    I just wanted to say I thought your essay was really touching and spot on. In my family we have Asperger’s and my father was given the diagnosis of Schizophrenia in the 70’s. Although, I myself have not made it all the way to Siberia, I do recognize aspects of the journey.

    Love and best wishes to you and your family.

    • Rita says:

      Thank you, Kathy. Asperger’s is one of the diagnoses in the mix for our family. I’m glad to hear this rang true for you. Best wishes to you and your family, too.

  4. Kate says:

    Oh Rita…as always, you write this so beautifully.

    When we arrive in Italy there is such a huge welcoming committee – people who want to show us around and share their knowledge and their favorite places and secret short cuts. When it comes to Siberia – no matter how many people are there with us – people are so busy hunkered down and surviving that we arrive to an empty train station. It’s so damn overwhelming.

    I don’t know your situation (if you’ve blogged about it that was before my getting to know you on the web) so I don’t want to assume we’re in a similar place but it does make me feel a little better to know that I’m not alone in loving and parenting a child who has a mental illness.

    We’re a society that blames bad behavior on parenting and if I could change ANYTHING about this whole situation (besides waving a magic wand and not having a child with a mental disorder to begin with) it would be that. People (even well meaning family members) look on and question how we are parenting or judge certain behaviors that are outside of our control (and are less than desirable) and that hurts. I’m still struggling with the fact that my child’s situation is independent of me and that while I can help her and guide her and try to give her the tools to manage, I can not change HER.

    I need a thicker skin. Or a warmer coat.
    Kate recently posted…things i’m watchingMy Profile

    • Rita says:

      Katie, I started writing this because I want so badly for others who interact with us to understand how/why the usual parenting playbook just doesn’t work for us. I get how hard that is to believe–it took me quite a while to understand it myself, and I’m living with it. And I think when this comes on later in life, there is a tendency to look at the parents and wonder what they did. I mean, their kid was perfectly fine before, right? They must have screwed him/her up somehow. Or, maybe that is not at all what people think. Maybe that is me projecting my own fears/worries/doubts onto others.

      I think you’ve expressed something essential here: That we cannot change who are kids are, and we have to truly see accept them as they are. As I’ve become better able to do that, I am better able to accept that we have to learn and employ new parenting plays. Some days I really chafe against this, but other days I can lean into it.

      Perhaps what you need is neither a thicker skin or warmer coat, but a bigger circle of friends to gather around a fire with. Count me in.

      • Kate says:

        Wow, do I get what you mean about chafing against new parenting plays! Effective discipline with my daughter is so contrary to how I grew up and my own default method (which I’m not saying is the best method – and certainly doesn’t work with her at all) that I’m just EXHAUSTED at the end of the day. I try to remind myself that my exhaustion is a good thing because it means I’m working to parent her in the way she needs and not the way I need, but damn if some days I don’t just wish it was all a little bit easier.

        And thank you for inviting me to your fire – and for sharing your experience because it can be really scary. Thank you for being brave.
        Kate recently posted…things i’m watchingMy Profile

        • Rita says:

          Yes! To everything–but especially to having to parent in ways that are so different from the ways that make sense to us. Or made sense to us. I have decided that “should” may be the most useless word in the English language. As in, “X should do this,” or “It should work if I do Y,” or “Z shouldn’t react like this.” There is very little “should” in our world now; only lots of “is.” As in, “This is what it is.” And it is exhausting, having to think through every little thing we do, examine all the actions and consider all the reactions through a foreign lens. And then do things (or not do things, which is where I am more of the time and which is such a hard, hard place for me to be) that feel so contrary so what our mothering gut tells us to do.

          You are welcome to sit by my fire any time. Just watch out for flying objects. 😉

  5. Marian says:

    Oh Rita, this is such a moving piece. I knew you were somewhere other than Italy, but I had no idea it was Siberia. Sending you love and strength. (And to Lisa and Kate, too. My heart goes out to all of you).
    Marian recently posted…Growing All The KaleMy Profile

  6. Josh Klauder says:

    Rita,
    I have always said – out loud even – that not knowing what to say is no excuse for not saying anything. You have opened your heart and shared your struggle in a beautiful and powerful way. If you can do that, I can do this. Silence is just not a response I can live with.

    Of course I DON’T know what to say- I have never been to that Siberia you are talking about, although I’m pretty close geographically. We all struggle, we all spend time in Holland ( sorry, Holland, I know you are a very nice country) but when it gets worse than that, when its frickin’ Siberia, we haven’t all been there. And we live in fear that what happened to you could happen to us. That’s why people try to believe that you must have done something wrong. Because then if I don’t do that wrong thing, it can’t happen to me. I’ll be safe. My child will be safe. It has been said that having a child means spending the rest of your life with your heart walking around outside your body. I don’t know anything more terrifying. And I’m speaking as a man who, when he finishes typing this, is going to walk home a mile and a half on a trail through dark woods with grizzly bears in it. As usual.

    I can only tell you that I see you -because you have chosen to let me. That it is most definitely NOT your fault. That you are a hero who did not ask to be holding up the world, but who is nonetheless doing it. That you have every bit of respect and support I can possibly attempt to convey to a near total stranger on the web. And I sincerely hope that this is somehow, in even the smallest way, a help to you.

    Josh

    • Rita says:

      Thank you, Josh. I really appreciate you taking the time to say something. I have been in that place you describe, so afraid of saying the wrong thing or only able to think of things that seem inadequate that I say nothing. And, yes, hitting “publish” on this post felt a bit like putting a piece of my heart out for public consumption, so: thank you. It is always a help to feel that you’ve been seen and heard. Maybe that’s all we need to do when faced with someone who is going through something we haven’t–just let them know we hear them and we care.

  7. Ria says:

    Damn tears staining my cheeks on my day of being in a total downer. My health keeps me in Siberia. Every fucking damn time the flyer comes in the mail that the snow has melted and the tracks are all available, I pack my bags and say my goodbyes to the neighbours I came to know albeit by handwaves through frosty windows, dance a little jig as I swing the suitcase high in the air then I stand at the station. Waiting. Waiting. Bloody waiting. Then a tiny snowflake appears on my shoulder. I brush it off. Silly snowflake, don’t you know it’s Spring! But more fall, then even more, then the announcement comes over the PA in a language I can barely understand, but the gist of it makes me understand. No train today.
    Thank you for writing the very feelings I have as I ponder my next surgery on Friday. This one is on my heart. Where are my family? Oh, you will get through it like you always do, they say, you are such a trooper! No, I live in Siberia, a place you don’t seem to want to visit.
    Thank you, Rita for at least having visited and writing about it, so that others can understand how desolate that place really is.

    • Rita says:

      I am sorry you are feeling so frustrated and discouraged and alone, Ria. I wish I had something to say that could help. It sounds as if you’re dealing with a chronic condition. I know a little bit about that, but mine does not require anything as significant as surgery. I don’t want to presume I know what this is like for you, but you remind me that there are all kinds of ways in which people can feel exiled and isolated. I hope that surgery might be a ticket on the next train for you. Will be thinking of you on Friday.

  8. Diane says:

    Rita

    This is beautifully written and provides a way for those of us who aren’t going through something like this to at least get some idea of what it’s like. Thank you for hitting the publish button.

    Diane

    • Katherine says:

      Agreed! I am thankful for your vulnerability and the window into your life. I don’t know what to say… but thank you? And I am sorry? I wish life were easier for you and your family. Wish you could just hop that train back to familiar, safe terrain. I have no doubt, however, that you are the best possible mother for your child- even on the days you feel like you’re not doing it well, not handling things the “right” way, etc. We are all just limping along sometimes.
      Love and prayers from Virginia.
      Katherine recently posted…Brain DumpMy Profile

      • Rita says:

        Oh, gosh yeah–I think all parents have seasons of limping along, for all kinds of reasons. And it would be awesome to hop that train back. One of the things we wrestle with is knowing that there likely is no ticket back. We know that the nature of the struggles will change, and learning and growth is also definitely part of the landscape, but we’ve probably been handed a couple of one-way tickets.

        Always appreciate love and prayers–thank you!

  9. Leilani says:

    Dear Rita,
    It is good to be reading your writing again and thank you so much for sharing this fascinating view. I’m glad that every corner of our planet (and our mind) has a beauty all its own, even though it takes a while to find it. Mental illness is something I am so unfamiliar with and have a hard time figuring out which box to put it in. I wonder if my grandfather struggles with it, but it’s never been confirmed. But he’s my grandfather. This is your child. Wow. You are a warrior and a good mama. I think half the battle is processing it and you have a place to do so, thank goodness. Will be sharing this.
    Leilani recently posted…Pumpkin Bars with Cream Cheese IcingMy Profile

    • Rita says:

      Ah, I’m likely an over-processor! 🙂 It’s nice to have such a friendly corner of the internets to work things out in. Please do share if you think it will be helpful to someone else.

  10. Erin says:

    I’m sorry to hear that you are struggling, Rita. I hope that you can find some comfort in the comments, here. I am always so struck by the quality of comments you receive…you have some really great, insightful readers. Hugs.
    Erin recently posted…balance.My Profile

  11. alexandra says:

    Can I share this, Rita? It is a vulnerable, honest, raw account of what it feels like to be stranded by life, when it seems that every one else gets to ride to their stop. I understood it, felt the icy cold of Siberia, and I do not have the issue that you do, but mine is live threatening food allergy, living every day on high alert, waiting for that phone call. You have taken something specific and made it a walk with me. Thank you for the company.
    alexandra recently posted…Preschooled: A NovelMy Profile

    • Rita says:

      Yes, of course. As I was writing, I thought that this experience must be much the same for any parent having to deal with any kind of disability after having a more typical parenting experience. But I didn’t want to assume. I only know my experience. I thought so long and hard about sharing this in a wider way, but already am glad to have reached out to find my fellow Siberians. Should have done it much sooner.

  12. Leigh S. says:

    Rita,
    Your writing always touches my soul so deeply. I am so sorry that you are in Siberia. I’ve been there, too – for different reasons. Thank you for being brave enough to share your experiences. Sending you lots of love. L.

  13. Maureen Clifford says:

    What a beautifully poetic piece on a difficult subject! Such honesty…it is truly an honor to read this. I send you all of the positive vibes in The Universe that things warm up a bit for you and your family. As always…

    • Rita says:

      Thank you, Maureen! Things are already warmer than they once were. Can never write things such as this when we’re deep in the throes of it, can we? But I will take your positive vibes any time you want to send some my way. 🙂

  14. Candace says:

    So, since I suspect sobbing pitifully into a latte and then laughing out of desperation isn’t going to be the appropriate response, I have to actually Produce Words. Okay, here goes…

    It’s kind of amazing to realize that you are doing everything you can, every moment you can, and sometimes you don’t even know you’re on a train. You just look around and think, “Huh. Snow. That’s weird.”

    The Bay Area is pretty forgiving of the Aspergers’ type of personality: rigid, occasionally brilliant, perhaps lacking in social skills but fulfilling critical enough functions to get stock options and an overpriced apartment.

    That being said, it still feels very much like you’re running a constant PR campaign, and constantly training another person in what feels like How to Be a Person. It’s exhausting. You don’t even know how much you’re doing until either someone points it out or you stop doing it. Sometimes my response is just,

    “Cold today. Not as many houses as I remember around here. Did we move?”

    Thank you again for the lovely post. (I do like Siberia. I don’t mind the cold, and I’d like to visit sometime.)
    Candace recently posted…Protected: DIY photosMy Profile

    • Rita says:

      Thank you, Candace. I guess I want to make sure I’m clear about something: I’m not categorizing Asperger’s as a mental illness. While it can be a disability, and it may be that what I’ve written rings true for any kind of cognitive difference, I was writing more about our experience with some other disorders. Though Asperger’s is part of the mix in our household, that’s not what got us on the train. That said, I know that most of my long dissatisfaction with “Welcome to Holland” comes from growing up with my severely autistic brother. I never felt that essay captured the truth of my family’s experience with special needs. And honestly, now that I’m writing this, I don’t know the true point of origin for our ticket. Some of what we’re dealing with likely stems from TAG issues. When it comes down to it, most days, it doesn’t really matter or change what we need to do. We’re mostly in a place much like the one you describe, where we’ve got our heads down and we’re doing the best we know to do in the moment we’re in.

    • Rita says:

      So good to hear from you, Penny. It’s been far too long since I’ve seen you. And I know you know more about this than I ever can.

  15. Sarah says:

    Rita, I’m coming late to this and couldn’t possibly add to what others have said so beautifully, so I’ll just say thank you for this incredibly moving post.

    I recently had an experience of using a really, really extended metaphor to work through something emotionally difficult (not about Holland or Schiphol or Siberia…actually more about cliff diving in Italy, which I would never compare to being transported to those other destinations, but just mention because, it’s kind of funny how the metaphors slot together), and found that it really helped even though it of course did not come anywhere close to actually solving the issue. I hope that exploring your Siberia metaphor has been helpful to you.

    It also strikes me that there is a long tradition of really important writing coming out of Siberia. I think it’s clear from your comment section on this post that your samizdat is being read and circulated and is making a difference to people, both in Siberia and abroad.

    Mostly I just really wanted to say that I’m thinking of you and wishing for good things for you and your family. XO.
    Sarah recently posted…Home improvements: Bad news and good news in the dining roomMy Profile

    • Rita says:

      Thank you, Sarah. Working through an extended metaphor is a great way for me to think through something. I think it’s one of the reasons I like writing poetry–testing out a metaphor is one of the best ways I know to get down to the truth of a thing, whatever it is. (For example, in the writing of this post, I originally assumed there were no tulips in Siberia. Doing some fact-checking, I learned that some varieties do grow there. At first I thought that wrecked one part of the metaphor I was working, but then I realized there really are tulips in my Siberia. I might not have seen them if I hadn’t started this piece of writing.) I would love to see your piece of cliff diving. Will you publish it on your blog?

  16. Deb Rodney says:

    Great article called, ” Welcome to Siberia.” Thanks!! Here’s one I wrote.

    WHEN YOU’RE THE MOTHER OF A MENTALLY CHALLENGED ADULT SON OR DAUGHTER
    What I’ve learned in the last 6 years.
    By Deb Rodney

    1. Take good care of yourself. Loving and supporting a son or daughter who is mentally challenged is likely the hardest thing you’ll ever do. It is stressful, frustrating and heartbreaking. You will feel scared. You will spend time grieving for the son or daughter you thought you knew. You might be verbally, emotionally or physically assaulted.

    Find ways that lead you back from heartbreak, fear and grief. Establish solid relationships with beauty in all its forms, the outdoors, your dancing feet, knitting, hiking, meditation and everything that nourishes you. Sort through your friends and go to the ones who can listen without trying to fix, when you need to talk, vent, cry or rage. Eat healthy, exercise diligently and sleep well. If you need help to sleep, talk to a naturopathic doctor. Sleeping aids can make your emotional ride more difficult, so choose them carefully. You will experience run-amuck emotions and will have an easier time being patient, compassionate, a sensitive listener, and a caring supporter if you are rested and healthy. Find a good therapist or counselor.

    2. Don’t try to figure out what happened. You’ll never know. Sifting through the past for reasons will drag you down into self-doubt, guilt or blame, which are destructive to you and your son or daughter. The past can’t be changed. The present is where you are. It is where your daughter or son, are. Live there. Be alive and alert there.

    3. Nobody really knows jack shit about mental illness. Medications can help but aren’t a cure. Beware of ‘tough-love’ tactics. I was ‘advised’ by more than one mental health professional to put my beautiful, young daughter out on the street. Getting a diagnosis may or may not be accurate or help. Labeling can stigmatize.

    The brain and the psyche are very, very mysterious. Anyone who acts or talks like they aren’t, is delusional. Remember that.

    4. Look for ‘angels’ in the mental health system and among the police. Don’t expect much help, though. How trustworthy is a system that picks people up from the streets, handcuffs them, locks them up, drugs them and puts them back on the streets?

    Look for individual people in the system that can help. They are there. During different crisis situations with my daughter, I’ve made dozens of dead-ended phone calls, burst into tears, wiped my face, taken a breath and made another dozen calls. Keep asking. The people, who can help, are important connections and resources.

    At some point, you may need the assistance of the police. If you do, call 911. If you live in Portland, ask for ECIT (Enhanced Crisis Intervention Team) trained officers. Especially, if you have a son, who looks or acts dangerous. It doesn’t take much for a mentally challenged person to be perceived as ‘dangerous.’ ECIT police have had 80 hours of training and are less likely to come to a crisis situation with their hands near their guns. If you don’t live in Portland, find out which officers are trained and who to ask for in a crisis.

    5. When interacting with your son or daughter, be grounded and keep your emotions in check. Most mentally challenged people are HIGHLY sensitive and intuitive. If I am with my daughter and I feel sadness, pity, judgment, anger or frustration, she will pick up on it. She will tell me, “Don’t bring that in here!” She can feel what I bring into the safety of her space. Now, I take a deep breath and try to let go of my emotional baggage before I answer the phone, open her door or speak. I ready myself for loving her.

    6. No one will understand. Not your family, your friends or your therapist. It won’t be because they don’t care. Mental illness is thoroughly stigmatized and misunderstood. People will believe that if your son gets a job, he will be fine. If he just shapes up and manages his anger, he will be fine. If he just gets the right drugs, he will be fine. A mentally challenged person often does not have the ability to live a socially ‘acceptable’ life in our community. They are quickly marginalized and isolated. We do not live in a village.

    We would not think of asking a death-defying cancer patient to get a job or manage their dis-ease. If you accept that there are reasons people aren’t able to understand you, then you won’t be hurt by them so often. Mostly, they don’t know the experience because they haven’t dealt with it. Even a mental health professional can’t understand what it’s like to be a mother of your mentally challenged son or daughter.

    Neighbors are probably the worst at understanding. Your son or daughter will likely be erratic and the neighbors will get scared. My daughter, a recluse, once came out of her house yelling and cursing. She threw a frying pan on the driveway. The neighbors complained. She was evicted. The most well-meaning person will sometimes forget that harmless, though unpredictable, mentally challenged people need to live somewhere. They expect there are places for ‘them.’ There are very few.

    Look for support from friends who listen, hold you while you cry, or take you to a funny movie. Look for the ones who are bewildered. Be cautious of the ones who think they understand, and want to fix the situation. Or maybe they want YOU to fix the situation? They will cause you a whole lot of pain and self-doubt, even if they love you and are well intentioned.

    7. You will be a target. Your son or daughter will likely resist you, hate you, curse you and maybe hurt you. My daughter doesn’t acknowledge me as her mother. It is painful.

    There are two parts of being mentally challenged. There is the dysfunction. And there is shame about the dysfunction. Our adult children feel shame that they are dependant on us. This shame leads them to resent us for helping them. It sounds bizarre. I find it profoundly true.

    They are in pain. When they cycle out of a psychotic episode, they will likely remember and feel shame. The neighbors will shame them by fearing them; the police will shame them with a pair of handcuffs.

    The are out of sync with the outside world. You represent that world. You will frustrate them. You will be a target. You will struggle with not being loved or respected by your son or daughter. Don’t let it diminish your devotion. Love, love, and love some more.

    8. Manage your judgment. What if mentally challenged people are doing us all a service by holding horrific parts of the collective pain in our world? There is a tremendous amount of suffering. Or what if some of us are so sensitive, we can’t deal with all that pain?

    In some indigenous cultures, the mentally-different are the shamans, the truth-tellers and the tricksters. What if your son or daughter is not ill at all? What if their sensitive souls make them gifted?

    One day, my daughter asked me intensely, “Can you hear the women screaming?” I listened carefully and told her I didn’t hear anything. She said, “Don’t you know that women are being beaten and raped, all the time, all over the world?” It was true. Another friend’s son has said, “The earth is under attack. Civilization is false and destructive.” I can’t argue with that either. I’ve found that if I hold the possibility that my daughter is gifted instead of ill, I treat her differently. It helps our relationship.

    9. Don’t argue with the irrational. Develop a practice of calm listening. Sometimes, my daughter says bizarre things. She listens to voices. They are real to her. It is not my role to convince her otherwise. If she makes a statement that sounds ‘off’, I remain neutral and don’t say anything.

    I carefully choose what I communicate. I have clear boundaries around being yelled at, cursed or disrespected. She respects them now because she knows they are reasonable requests. She has boundaries about when I can come to her house. Hers are also reasonable requests.

    If I feel she is unsafe, I know I can call ECIT police officers or a connection I’ve made with the Behavioral Health Unit of the Portland Police. We can quickly become targets, so if you don’t feel safe, it’s important to call the police sooner, rather than later.

    I also know that sometimes, no matter what I do, it will be wrong. I don’t argue with that either. If my daughter gets angry and asks me why I brought her tortillas with a woman’s picture on the package, I know she’s telling me not to get that brand. Her emotions sometimes leak out and spill over. It’s part of her inability to be social. It’s not about me.

    10. Look deeper. Sometimes the mentally challenged speak in a different kind of language. Don’t jump quickly to interpret what is said or done. Be curious about it. Wonder what it might mean. If your son tells you that you are dangerous, notice how or why he isn’t feeling safe. Cooking good food for my daughter or bringing her music or flowers not only keeps her healthy, it keeps her grounded in the sensual pleasure of being alive. We all need that. Sometimes it’s hard to see basic needs.

    11. Provide love and safety. It’s the most important thing you can do! No one can heal if they don’t feel safe. My goal for the last 4 years has been to keep my daughter off the streets. She has been evicted twice. Rental housing is impossible to get with a record of evictions. There are long wait lists for a few units of government housing provided for the mentally disabled. It was a frightening challenge until some beloved and gracious friends bought a house where she can live without fear of being evicted again.

    I find it excruciatingly hard to fathom that in our community a young, beautiful woman who can’t cope with the world in the simplest ways, can end up on the streets. There would be absolutely NO chance for any healing if that happened to my daughter. Being beaten or raped would add significantly to her inability to feel safe. How would she recover with Post Traumatic Stress Disorder added to her dysfunction? And yet, many of the mentally disabled live on the streets, where it is dangerous.

    My daughter is a recluse. She’s left her house only a few times in five years. Much of her dysfunction is related to feeling unsafe in the world. She definitely needs a home!

    On another level, safety can mean keeping routines. Introducing something new can be scary, even if it is simply a different brand of milk. I talk to my daughter about any changes to our routine in advance. I give her time to integrate them. Our worst times have been when I surprised her with a decision I had already made.

    12. I bow to you. Every situation is different. Your son or daughter may be functional enough to get a job and needs encouragement to get and keep one. Medication may help them if they WANT to take it. There are thousands of stories. Thousands of choices. I hope my insights help you somewhere along your path.

    I bow to you for showing up as a mother in a perilous situation. For wanting to love beyond your capacity. For trying to figure out how to do it.

    Deb Rodney
    Feel free to contact me about this article at debrodney@gmail.com

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