Is there anything worse than wounding a child? There are more people than we know, those with autism, other Developmental Disabilities and those who are "neuro-typical" (NT's) who have been hurt as children and their wounds can often last forever.
A mother who struggles to escape the patterns inflicted by an emotionally and physically abusive father. A young adult with High Functioning Autism who begins to perseverate on a specific type of on-line pornography who was known to have been sexually abused in that fashion prior to being adopted. An engaging, very smart NT 14 year old now being raised by relatives who was raised for his first 10 years by drug addicted parents who now copes by "not caring about anything" except his education and friends. An adult NT woman haunted by memories of her brother's sexual abuse of her. Another adult NT woman who can barely say out loud the word "sex" due to the abuse she is terrified to articulate. Every therapist has heard these stories. And these are the very overt kinds of abuse, not even including the "sub-clinical" emotional abuse that is so difficult to measure that kids endure, particularly those with DD's who can be so very challenging to manage.
The heartbreak of these wounds is how chronic they are, how deep they are and how pervasively they can effect relationships and behaviors.
Kids with DD's are 4 to 5 times more hurt by sexual and physical abuse than NT kids, but DD kids are so often unable to self report or easily influenced to not report. While we know of over 566,000 confirmed reports of abuse in 2012, we have no good way to estimate how many of these kids have developmental disabilities (those statistics aren't recorded) and given the lack of reporting, we really can't easily estimate the number of DD kids who are abused or neglected each year. If you do want to imagine, think big.
We certainly have to look at the individuals who abuse. Having a child is such a deep responsibility, and yet so common, so easy to accomplish and so taken for granted in our society where a child born into a 2 parent household is less and less frequent. Where we know the increased risk of abuse in single parent homes, either by the primary caretaker, their partners or others is sky high. And we know that those who have been abused are more likely to repeat the pattern, forcing us to mix our disdain for the abuser and compassion for the abused.
How do we support parents who are at risk of abusing their kids, particularly those with DD kids? The social policy questions are all but unanswerable: Do subsidies for childcare or food stamps increase the rates of single parenthood? Do SSI payments to families of kids with DD's somehow "enable" them? (For the record, I don't think so, but there are lots who do.) Does it help to educate teens about birth control (teen mothers are much more likely to have kids with DD's due to a variety of factors)?
Volumes can be discussed about this topic, from the macro level of social policy to the micro level of the next client I have who is hurt. All I know is that the wounds run deep, and sometimes leave scars that interfere with the core of intimacy and can take a lifetime of coping.
Thursday, April 10, 2014
Wednesday, April 2, 2014
Let The (Blame) Games Begin! (or Past vs Future)
It goes without saying that families with kids with autism and other DD's are stressed. Really really stressed. Stressed to the point that it can challenge the marriage, challenge one's own sanity. If you have a kid with DD's, you know what I mean.
I've seen couples so burdened by this stress that they engage in an ongoing war of blame. This is true of those who remain married as well as those who are divorced. This can result in a great deal of mudslinging, particularly about what happened in the past. Past hurts and pain can reign supreme in relationships. And we tend to spend a lot of time looking at and reviewing what happened. It's a way of understanding, digesting at a deep level the course of the history.
Indeed, retrospection is a classic aspect to family and couples therapy. We examine the family of origin. What was the nature of the marriage in the family you came from? What was the balance of parental power in the family you came from? Were there unhealthy alignments between parent and child? How did the parents manage their own conflicts? Did they agree on parenting strategies? Were they close? Affectionate? How did you and your (ex) spouse meet? What drew you to one another? Is your marriage similar or different to that of your parents'? There are innumerable questions we ask in hindsight to understand what the patterns might have been that brought us to our current situation.
And yet......sometimes couples become mired down in what happened and it turns into a blame game that devolves into what seems a game to the death (hence my reference to Hunger Games.) It is cruel to do, hurtful to see and potentially devastating to children who witness it.
I admit, I've become drawn into the blame game as a therapist. Trying to sort out who did what when and to whom as a way of trying to create some clarity between the parties. It's hard work and often not successful. So recently, when observing a couple playing this most hurtful game, I considered something different. Let's look to the future. Slogging in the mud of yesterday is so often unproductive. What about considering what I plan to do tomorrow when we have a problem? What can I do to change the atmosphere of the relationship? How can I help create a new narrative in our communication style and how we resolve conflict?
Looking to the future is as important as looking at the past. We do learn from our history. We also benefit from creating a plan for change and monitoring how and whether that plan is working. Ed Koch, former mayor of New York City was famous for asking New Yorkers "How'm I doin'?" He wanted feedback both on what happened and used that to change how he conducted himself in the future. More of this kind of marital questioning is in order for those couples mired down in the blame game. Let the (future) games begin!
I've seen couples so burdened by this stress that they engage in an ongoing war of blame. This is true of those who remain married as well as those who are divorced. This can result in a great deal of mudslinging, particularly about what happened in the past. Past hurts and pain can reign supreme in relationships. And we tend to spend a lot of time looking at and reviewing what happened. It's a way of understanding, digesting at a deep level the course of the history.
Indeed, retrospection is a classic aspect to family and couples therapy. We examine the family of origin. What was the nature of the marriage in the family you came from? What was the balance of parental power in the family you came from? Were there unhealthy alignments between parent and child? How did the parents manage their own conflicts? Did they agree on parenting strategies? Were they close? Affectionate? How did you and your (ex) spouse meet? What drew you to one another? Is your marriage similar or different to that of your parents'? There are innumerable questions we ask in hindsight to understand what the patterns might have been that brought us to our current situation.
And yet......sometimes couples become mired down in what happened and it turns into a blame game that devolves into what seems a game to the death (hence my reference to Hunger Games.) It is cruel to do, hurtful to see and potentially devastating to children who witness it.
I admit, I've become drawn into the blame game as a therapist. Trying to sort out who did what when and to whom as a way of trying to create some clarity between the parties. It's hard work and often not successful. So recently, when observing a couple playing this most hurtful game, I considered something different. Let's look to the future. Slogging in the mud of yesterday is so often unproductive. What about considering what I plan to do tomorrow when we have a problem? What can I do to change the atmosphere of the relationship? How can I help create a new narrative in our communication style and how we resolve conflict?
Looking to the future is as important as looking at the past. We do learn from our history. We also benefit from creating a plan for change and monitoring how and whether that plan is working. Ed Koch, former mayor of New York City was famous for asking New Yorkers "How'm I doin'?" He wanted feedback both on what happened and used that to change how he conducted himself in the future. More of this kind of marital questioning is in order for those couples mired down in the blame game. Let the (future) games begin!
Thursday, March 6, 2014
Marital Sex Love and Affection and Couples with Autistic Children (or Marital Hygiene)
When I was in training with Peter Fleming, he presented on the topic of "Sex, Love and Affection" and its affect on couples. The definitions of these 3 components of relationships is pretty simple: Sex is....well you know that. Love is the feeling of connection we have to one another. The best definition of love that I have heard is the relationship I'm in that makes want to be the best "me" I can and the relationship that inspires me to grow and commit. See Romeo and Juliet for a broader description. Affection is the physical touch - non sexual - that we exchange as a way of comforting and being comforted physically. It can be as gentle as a light touch on the shoulder or as strong as a deep embrace. These are the components of a relationship that help it endure over time.
With one exception: communication. Yup, that same old boring topic that gets beat to death when discussing relationships. But Fleming notes a significant aspect of communication in the weave of sex, love and affection. He posits with great insight, I believe, that a relationship with strong communication can endure a lack of love, a lack of affection and even, gasp, a lack of sex. How? Communication bridges the challenges that we face in the lack of sex, love and affection. Surely, the early part of relationships include great amounts of all 3 of these components, as well as communication. That's how lasting relationships are built. The absence of any of these aspects does not make for a relationship that can survive the vicissitudes of life. Hard, direct, compassionate communication (these are not conflicting) is a requirement for relationships that are to survive, even if sex, love and affection are all present. Can you imagine a relationship with these 3 components without a strong foundation of communication? Hardly.
Consider, then, marriage in the context of a child with autism or any other special need. Families under these pressures struggle just to make all the appointments needed. There's medical doctors, mental health appointments, medication checks, special ed meetings, social skills groups, PT, OT, Speech, hippotherapy, athletic activities, all in the name of helping the child with special needs cope as much as possible with the realities of the world. And this doesn't include any efforts on behalf of other children not to mention the needs we have individually to care for ones self. And did I mention laundry? Dinner? Getting the dog to the vet? How about getting the oil changed in the car? What about working late on a special project?
How often do parents without special needs kids collapse into bed at night, the last thought on their mind being physical intimacy. How much more-so, then, will this be the case for parents of children with special needs?
One of the barometers (but hardly the only one) that I measure couples by is their capacity to retain their intimate lives. It's not uncommon for folks to say that they have to "schedule" private time together - most couples with children understand that. It is also common for me to interview a couple about their kid/s and stumble on the lack of intimacy their relationship has maintained. Couples who have sex every few months, once or twice a year or even less often acknowledge that this is the result of the slow wear and tear of the many challenges of being a parent presents to couples. Overwhelmingly this occurs without the benefit of the hard, honest communication that is needed in relationships. More frequently it's just bad habit. I might call it poor marital hygiene. This can be true for couples with typical children, and couples with special needs children are even more vulnerable to this. What often comes with this is a susceptibility to extra marital relationships. They can be comparatively easy - if poisonous to the marriage.
Fleming teaches that "saying the hardest thing" is a sign of good communication. Is there any better place than a marriage to communicate so actively? I will propose that couples that have learned how to communicate (which includes listening) the hardest thing have really good marital hygiene, and can survive challenges to sex, love and affection that affects many couples through the years.
With one exception: communication. Yup, that same old boring topic that gets beat to death when discussing relationships. But Fleming notes a significant aspect of communication in the weave of sex, love and affection. He posits with great insight, I believe, that a relationship with strong communication can endure a lack of love, a lack of affection and even, gasp, a lack of sex. How? Communication bridges the challenges that we face in the lack of sex, love and affection. Surely, the early part of relationships include great amounts of all 3 of these components, as well as communication. That's how lasting relationships are built. The absence of any of these aspects does not make for a relationship that can survive the vicissitudes of life. Hard, direct, compassionate communication (these are not conflicting) is a requirement for relationships that are to survive, even if sex, love and affection are all present. Can you imagine a relationship with these 3 components without a strong foundation of communication? Hardly.
Consider, then, marriage in the context of a child with autism or any other special need. Families under these pressures struggle just to make all the appointments needed. There's medical doctors, mental health appointments, medication checks, special ed meetings, social skills groups, PT, OT, Speech, hippotherapy, athletic activities, all in the name of helping the child with special needs cope as much as possible with the realities of the world. And this doesn't include any efforts on behalf of other children not to mention the needs we have individually to care for ones self. And did I mention laundry? Dinner? Getting the dog to the vet? How about getting the oil changed in the car? What about working late on a special project?
How often do parents without special needs kids collapse into bed at night, the last thought on their mind being physical intimacy. How much more-so, then, will this be the case for parents of children with special needs?
One of the barometers (but hardly the only one) that I measure couples by is their capacity to retain their intimate lives. It's not uncommon for folks to say that they have to "schedule" private time together - most couples with children understand that. It is also common for me to interview a couple about their kid/s and stumble on the lack of intimacy their relationship has maintained. Couples who have sex every few months, once or twice a year or even less often acknowledge that this is the result of the slow wear and tear of the many challenges of being a parent presents to couples. Overwhelmingly this occurs without the benefit of the hard, honest communication that is needed in relationships. More frequently it's just bad habit. I might call it poor marital hygiene. This can be true for couples with typical children, and couples with special needs children are even more vulnerable to this. What often comes with this is a susceptibility to extra marital relationships. They can be comparatively easy - if poisonous to the marriage.
Fleming teaches that "saying the hardest thing" is a sign of good communication. Is there any better place than a marriage to communicate so actively? I will propose that couples that have learned how to communicate (which includes listening) the hardest thing have really good marital hygiene, and can survive challenges to sex, love and affection that affects many couples through the years.
Wednesday, January 29, 2014
Role Models
Some folks are just born to do this stuff - I mean the parent stuff. I recently met with a teenager with developmental disabilities and the father. The teen had gotten in "trouble" at school (I use quotes as this is one of the times that I think the "trouble" the child got into was due to the school's cutting corners in addressing the child's needs) and the father impressed me. He really impressed me.
I've seen these parents before and it's so refreshing. And this is hard to accomplish given the challenges that kids with autism and other DD's can present. They're tough kids sometimes. Some are tough most all of the time with challenging behaviors, oppositionality, impulsivity, etc etc etc. Yet even with these challenges, the task of the parent is to remain an adult. As has often been said, there is no scene more silly than that of a parent arguing with a child at the child's level. That's just two kids arguing - and who wins that one? The child of course.
The father's demeanor was simple. He was an adult. No shaming "you should have known better" statements (though there might have been room for such a comment.) No angry outbursts (though the child's behaviors did result in an ER visit which was more noteworthy for the inconvenience - and parental concern than his medical condition, the child was fine.) No sarcasm. No exasperation on dad's part. Just pure, thoughtful and calm "adult." Dad discussed, he reflected, he commented, he listened. He maintained a calm voice and demeanor. Dad knew who his audience was and spoke accordingly. The result? The teen listened. Now I (and I dare say the parents) don't think this will be the last jam this teen gets into. But the teen was not turned off, shamed or embarrassed. The respect given was critical to maintaining the relationship between parent and child.
I've seen these parents before and it's so refreshing. And this is hard to accomplish given the challenges that kids with autism and other DD's can present. They're tough kids sometimes. Some are tough most all of the time with challenging behaviors, oppositionality, impulsivity, etc etc etc. Yet even with these challenges, the task of the parent is to remain an adult. As has often been said, there is no scene more silly than that of a parent arguing with a child at the child's level. That's just two kids arguing - and who wins that one? The child of course.
I learned a lot from this dad. There are lots of moms and dads (not to mention grandparents who are stepping in for moms and dads) who really do well at maintaining their "adult" sensibilities in the midst of what can be chaos.
For the rest of us....find these folks. Study them. Learn from them. That's what I do.
Friday, January 3, 2014
Blended Families
The frequency of "blending" new families is high given our divorce rate. Divorced people understandably want companionship and seek to re-partner with another. After all, we are made to be companions with others - otherwise we'd all be living in caves and reproducing with spores.
When adults remarry they bring their children with them, obviously. What's less obvious is the challenge of blending children and adults of different families together - particularly when one of the kids has a developmental difference or challenge.
The standard element in blending is the ability to form a bond. I recall a friend of mine who worked in a cosmetic factory sharing his amazement at how they were able to mix oil and water to form a cream that didn't separate. This is only done through chemical bonding. Is bonding between people so much different? We create deep, physiological bonds with one another when we marry. Couples become "one flesh" to quote the Bible. Infants are known to literally smell their mothers. This is bonding. So how do we bond with a child who is not of our making? How does the child bond with us?
The process of "bonding" in blended families is a noble goal which is often attainable with a lot of work by all the parties involved. And yet.....some of our kids are hard. They're hard behaviorally, emotionally, and sometimes even physically (I'll leave that to your imagination.) So I've come to believe that some of our families can be mixed, or joined, or combined, but I'm not as sure as I once was that "blending" is going to happen. And I think that's OK. Accepting the reality of what is allows us to live in the present, with all the love and hopes in our heart that any other family member has. But falling short of the holy grail of "blending" is acceptable. It is not a failure of effort or love or commitment. It need not be a sign of marital discord. It might just be a sign that the needs of one of the members of the family present an unusual challenge which are not well designed for "blending."
I've come to believe that mixing, combining or joining can be just as beautiful.
So, for blended families, keep the goal of "blending" in your sights, just remember that the challenges to blending don't make what you have a failure.
When adults remarry they bring their children with them, obviously. What's less obvious is the challenge of blending children and adults of different families together - particularly when one of the kids has a developmental difference or challenge.
The standard element in blending is the ability to form a bond. I recall a friend of mine who worked in a cosmetic factory sharing his amazement at how they were able to mix oil and water to form a cream that didn't separate. This is only done through chemical bonding. Is bonding between people so much different? We create deep, physiological bonds with one another when we marry. Couples become "one flesh" to quote the Bible. Infants are known to literally smell their mothers. This is bonding. So how do we bond with a child who is not of our making? How does the child bond with us?
The process of "bonding" in blended families is a noble goal which is often attainable with a lot of work by all the parties involved. And yet.....some of our kids are hard. They're hard behaviorally, emotionally, and sometimes even physically (I'll leave that to your imagination.) So I've come to believe that some of our families can be mixed, or joined, or combined, but I'm not as sure as I once was that "blending" is going to happen. And I think that's OK. Accepting the reality of what is allows us to live in the present, with all the love and hopes in our heart that any other family member has. But falling short of the holy grail of "blending" is acceptable. It is not a failure of effort or love or commitment. It need not be a sign of marital discord. It might just be a sign that the needs of one of the members of the family present an unusual challenge which are not well designed for "blending."
I've come to believe that mixing, combining or joining can be just as beautiful.
So, for blended families, keep the goal of "blending" in your sights, just remember that the challenges to blending don't make what you have a failure.
Monday, October 21, 2013
Communication Challenges with Challenged Communicators
Autism is primarily a disorder of communication. Children with autism struggle with the spectrum of communication that includes actual expressive language to the subtleties of non verbal language. They may not understand mom or dad's angry look, or the frustration of siblings or peers. Which is why we spend lots and lots of time working with them on how to communicate.
Yet despite this obvious trait of kids on the spectrum, so many of us - parents as well as professionals - spend agonizing amounts of time trying to teach them certain life lessons with - language - their weakest suit! You can certainly ask: "If they need to learn language, that's how we have to communicate - what else are we supposed to do?" And there is something to that question. But I also think that we miss something when we spend lots and lots of time "talking" with them. In my experience, many kids with communication issues just tune out, despite their best efforts to actively communicate. It's a weak suit and when we spend too much time playing to that WE get frustrated that they don't keep up, even though it's likely that they can't keep up.
So we have a dilemma. Do we stop verbal communication with them? Certainly not. What am I advising, then? What I think we need to do as professionals is be cautious of parents who come to us wanting "talk therapy" with their kids who are on the spectrum or who have other communication obstacles such as those posed by some cognitive delays. How much can the child benefit from talk therapy? We need to be cautious of feeding in to parent hopes that this time, this therapist will finally be able to "get through" to him/her when that is sometimes an unrealistic goal.
What do I recommend to parents? Remember that your child's disability is first and foremost communication based. Mixing your communication with him/her with your anger, yelling or shaming is only going to confuse your child. (I think there's a place for anger and shame in parent - child relationships, but that's another discussion for another time. Yelling - not so much.) Avoid sounding like the teacher in the Charlie Brown cartoons - a "wa wa" sound that is never intelligible. If you've asked your child to do something, repeating it numerous times will only teach him/her that the first time doesn't matter (true for kids with special needs or not, btw.) Enforcing compliance does not happen by endless chattering.
Sometimes less (communication/repetition/harping) is more.
Yet despite this obvious trait of kids on the spectrum, so many of us - parents as well as professionals - spend agonizing amounts of time trying to teach them certain life lessons with - language - their weakest suit! You can certainly ask: "If they need to learn language, that's how we have to communicate - what else are we supposed to do?" And there is something to that question. But I also think that we miss something when we spend lots and lots of time "talking" with them. In my experience, many kids with communication issues just tune out, despite their best efforts to actively communicate. It's a weak suit and when we spend too much time playing to that WE get frustrated that they don't keep up, even though it's likely that they can't keep up.
So we have a dilemma. Do we stop verbal communication with them? Certainly not. What am I advising, then? What I think we need to do as professionals is be cautious of parents who come to us wanting "talk therapy" with their kids who are on the spectrum or who have other communication obstacles such as those posed by some cognitive delays. How much can the child benefit from talk therapy? We need to be cautious of feeding in to parent hopes that this time, this therapist will finally be able to "get through" to him/her when that is sometimes an unrealistic goal.
What do I recommend to parents? Remember that your child's disability is first and foremost communication based. Mixing your communication with him/her with your anger, yelling or shaming is only going to confuse your child. (I think there's a place for anger and shame in parent - child relationships, but that's another discussion for another time. Yelling - not so much.) Avoid sounding like the teacher in the Charlie Brown cartoons - a "wa wa" sound that is never intelligible. If you've asked your child to do something, repeating it numerous times will only teach him/her that the first time doesn't matter (true for kids with special needs or not, btw.) Enforcing compliance does not happen by endless chattering.
Sometimes less (communication/repetition/harping) is more.
Monday, September 23, 2013
What's The Weather Like?
Have you ever noticed how often we discuss the weather? It's always on the news - sometimes it's so important it leads the news. We discuss it with our families, friends and co-workers. The weather report is the butt of jokes - when people have nothing else to discuss, they discuss the weather.
Why?
I believe the reason we spend so much time discussing the weather is that we like to anticipate, we like to know and plan what's coming next. Will I need a sweater, a coat, an umbrella? Short or long sleeves? We understand how important being uncomfortable is and want to avoid that.
This is similar to the need to help our kids, with or without disabilities, transition. A lot of ink is spilled about helping kids transition from one activity to the next. One major difference between the kids need to be prepared to transition and our desire to know the weather is that we understand how being unprepared for the weather can be a problem. Our kids don't understand, and don't want to understand the impact of transitioning on their emotions or behavior. They just want to have fun. They just want to fully express their energies on whatever activity they're doing at the moment, particularly when it's a "preferred" activity.
So when parents don't prep their kids and just expect them to turn off their electronics of choice - even if it means "pausing" the current game, or put down their book, or for their friend to go home etc. they're asking for trouble. Kids need lots and lots of prep for transitions, even if they don't say they do, or if they don't act like they do.
If you're unsure how important this is to your kids, try to go a few days without listening to the weather report.
Why?
I believe the reason we spend so much time discussing the weather is that we like to anticipate, we like to know and plan what's coming next. Will I need a sweater, a coat, an umbrella? Short or long sleeves? We understand how important being uncomfortable is and want to avoid that.
This is similar to the need to help our kids, with or without disabilities, transition. A lot of ink is spilled about helping kids transition from one activity to the next. One major difference between the kids need to be prepared to transition and our desire to know the weather is that we understand how being unprepared for the weather can be a problem. Our kids don't understand, and don't want to understand the impact of transitioning on their emotions or behavior. They just want to have fun. They just want to fully express their energies on whatever activity they're doing at the moment, particularly when it's a "preferred" activity.
So when parents don't prep their kids and just expect them to turn off their electronics of choice - even if it means "pausing" the current game, or put down their book, or for their friend to go home etc. they're asking for trouble. Kids need lots and lots of prep for transitions, even if they don't say they do, or if they don't act like they do.
If you're unsure how important this is to your kids, try to go a few days without listening to the weather report.
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