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.

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.

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.     

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.

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.

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. 

One Year Later

It's been a year since I've begun this blog - something I was told I absolutely HAD to do and which I resisted strongly.  As I don't read many blogs myself, I wondered who would?  Well, exceeding my expectations, there have been almost 1100 readers this first year.  So, I ask you, what would you like to hear about? 

Feel free to let me know at Moshe.Manheim@gmail.com.

My best to you for the coming year's reading and growth!

Moshe

Team Building and Fun

A friend of mine had an interesting reflection on his team building experience.  He was in a graduate program of about 30 people.  The group had not really jelled until one night the whole group went to a bar and did what graduate students do at bars (you can fill in the rest.)  He noted that after that experience the entire group had a much closer bond.  Gone was the distance between people.  Everyone was close.  They had a shared experience together, a fun shared experience that permanently changed the group dynamic.

So what does this have to do with autism, families or growth?  People with autism, particularly higher functioning folk, often struggle with how to establish friendships. Professional services are full of "social skills groups" and 'team building" to help these folks learn these skills.  And it is important to note that many of this HFA population very much wants to have these connections with others. 

So what about my friend's experience is so difficult for the autistic population?  I think it has to do with the sense of relationship and sharing that happens as friendships develop.  Simply put, it's how to have fun together.  Remember that one of the significant "delays" of the Pervasive Developmental Delay is that skill that has to do with social relationships - how to make friends, the give and take of creating emotional bonds - how to have fun.  So consider the essence of these activities - being social, emotions, emotional "reciprocity," including spontaneous "reciprocity of speech" or the ping pong NT's (neuro typicals) have in the course of conversation.  These are all the things that folks on the spectrum struggle with.  So it makes perfect sense, then, why a night of blowing off steam for my friend in graduate school created the emotional bonds that folks with autism struggle.

Fun.  Consider for a minute what fun is to you.  Most NT's enjoy sharing their fun - at least some of the time.  Most folks on the spectrum have fun alone, whether it's with a video game, or reading, or surfing the web.  The video game may be a fun activity that can be shared, but so often that is done remotely, so the sharing is literally on the screen with one's partner being anywhere else on the planet. 

How to help folks on the spectrum with these issues?  Practice, practice, practice.  Support, support, support.  Guidance and patience, followed up with - you guessed it - guidance and patience.  Providing opportunities for practice, the support, guidance and having the patience needed to do so is often a struggle for caregivers, a discussion for a different time - and I'll be happy to address those should you want.  But in the meantime, it is interesting to reflect on my friend's experience of the connection between fun and building friendships.