Snapshots: Intimacy with Children and Autism

Not even peanuts, no pretzels anymore. Years ago we had meals on airplanes.  For free.  Perhaps it's for the best that they cut these out.

But I can listen to music, now that my year of mourning is over, and rather than pack breakfast, last minute I add Bryn Terfel and Renee Fleming to my ITunes library.

And for the first time in months,
there's that  . . . calm.

Except I miss FD.

We're on separate vacations because I had a job in the states and he has a sick relative in London, a stop-over to Israel. He left almost a week ago. Neither of us anticipated how it would feel, the apartness. We talk about separation being good for a relationship, but there is such a thing as too much of it, especially if you go into it thinking that it’s no big deal.

We’re winding it down. I’m on my way home, ready to board. My 4-day work vacay is over.

Dare I share all of this with you?

When your children are close to you and they marry people from out of town, and they settle there, in someone else’s home town, you feel like a loser. Another couple, other parents your age, people who could have been classmates, lovely though they may be, are the winners, and you and your partner, the losers.

And when the grandchildren arrive, for the first time in your life, if you’re someone like me, you feel an emotion that is highly disconcerting. Even though you’ve never felt it before, never had it, and certainly aren’t consumed with it, rarely even think about it, you know it right away. It's jealousy.

I’ve kvetched about it before, and my kids think I do it to guilt them, but nothing could be further from the truth. I only write about it because it’s so rich, seriously. Visiting adult children is so rich emotionally, seeing them flourish, raise their own families, struggle with their work and relationships, making it, not without stress; this is so full of emotional cream that swooping in from the outside and not writing about it, frankly, feels wrong.

But it went too fast. Time to get home.

FD is preparing for his return trip, too. There are so many miles between us, the time zones are so different, that we haven’t really talked much, not at all, in over a week. Not much texting, hardly an email, and it hasn't helped that the phone I rented for him, the pelephone, is garbage, a very old Nokia.  Perhaps the first Nokia ever made, first generation. Or it's been in the Kineret.

Which is why he answers my call to his IPhone on the first ring, asks how I’m doing, how are the grandchildren. I want to tell him everything about each child, each engaging, miniature package, but instead wax on about what they are not, and how our lives could have been so very different, so much more challenging, if they were different, or if our children, as children, had been differently blessed.

I tell him that our daughter-in-law is reading up on autism. She runs a summer project with kids who have special needs and has picked up some library books. These are on a table, whispering to me. I knock off the Greenspan/Wieder book, Engaging Autism-- the Floortime approach-- in an afternoon while the little ones nap. The model, DIR, uses the language of my generation: Developmental-Individual differences-Relationship therapy. Empathy is the active ingredient. This opens my eyes.

I begin to spin.

If you use

(a) sensory integration; and add
(b) DIR; then mix a heavy dose of
(c) Lovaas and Rimland's ABA, Applied Behavioral Analysis;
you would have
(d) a biological-psycho-social-developmental-relationship- empathy-based therapy for children on the autism spectrum.

Perhaps these therapies overlap already. I'm not an expert in any of them, but know that some of us use bits and pieces universally with adults and children, not even realizing their efficacy for autism. I know nothing, is the truth, about the spectrum, am taking what I read at face value, hoping my readers will teach me.

“There’s so much I don’t know,” I lament to FD.

“Reading is so humbling, makes me feel so remiss. It has been too easy, just saying, That’s not my specialty, autism. Reading about it is a reminder that it is so much harder for some parents, we had it so easy, have it so easy, pooh, pooh, pooh, kineye-in-harah (a magic incantation to ward off the evil eye) relative to some.”

FD is quiet.

Then we move on, talk about each of the grandchildren, their special traits, their individuation, how different one is from the other. We talk about how they relate as siblings, and how they have gradually come to trust us, people who pop in and out of their lives for these relatively short, but intense visits. Relating to little people who are more than 50 years our junior highlights how humans grow older, but in certain ways, tucked in that gray matter, remain children.

Were it not for Google-video chat this slice, these cells, would get no exercise at all. And this way the little ones think we’re on television, on par, or at least in competition with Dora the Explorer.

But without in vivo face time, human to human, nose to nose, it wouldn't mean a thing, not to me, anyway, because the language children speak is play, naturally, and if a person likes to play, then children will follow along, any Pied Piper will do. So I tell FD that we danced, we sang, we ran. And I taught the five-year old how to sit full lotus, something most people can’t do, but she’ll be able to do now, forever.

What wows me the most, I tell him, isn’t the play, and it isn’t the way they interact with one another (and with their parents). It is the intensity of relating, the eye contact.

These kids look at me as if they’re working on memorizing my face, as if they need to tell me that they care, they’re interested. They grab my chin and tell me what they want because they trust this will work.



And yes, they negotiate for me to stay, each time. “Miss your flight,” is one of our jokes. “Just miss it.”

It is miraculous, 

that a child can make a parent, 

a grandparent, feel so unimaginably special. 

When a child looks deeply into your eyes 

you think you must be the only one who matters,

if only for that moment. And it is true.

And when they look away, you wonder what is going on in there.

So we travel for those moments, to find the child is desirous of intimacy. Even at two years old, probably at birth, a child is desirous, has a will to love and be loved, a self wanting to share, for all we know. And when this happens, this intimacy, when we are the object of this desire, it feels deliciously unexpected, precious not only for us, but for the little person, too.

When it doesn't happen, not right away, as is characteristic of autism, it can be terrifying to those who have waited nine months for the arrival, who will continue to wait for the full meal.

When I went to graduate school, even though behavioral therapies were popular, researchers of the psychiatric bible still called the disorders on the autism spectrum pervasive. The prognosis was thought to be bleak and I couldn’t do it, couldn’t go into early childhood work because I knew that you can’t be an early childhood expert and not take on pervasive developmental disorders.

And I think I knew it would drain me. Funny how abuse, neglect, exploitation, trauma—this doesn’t burn me out.  All week long, heart wrenching stories.  But thinking of a childhood disorder as pervasive, a condition that will not change, had an aversive effect. The Greenspan book wasn't around and nobody spoke of sensory integration, nor the refined reward and repetition application of Lovaas and Rimland.

Autism is not the hopeless challenge they made it out to be thirty years ago, not according to these pioneers. Kids with impairments in social functioning are neurologically different, require alternative stimulation, a more quiet, individualized approach. Engaging them isn’t easy, but it isn’t impossible. Not surprisingly, it’s all about empathy, learning who the little person is, feeling his feelings, and relating on his level. And that need, the need for intimacy, when it is tickled, awakened, coaxed, tested, is universal and is the way to healing, if there is one.  If I am to believe what I read, and I do.

Ah, we’re about to land. And always a sucker for the arias, I’m listening to Le Nozze di Figaro. But they’re telling me to put away all electronic devices, so just one more snapshot. I'm home.

That's my house.


therapydoc

Snapshot: The Purim Story Through the Doctor's Eyes

Somebody called me today, right in the middle of my workday, asking me to tell her over the story of Purim. The holiday comes up this weekend and her hairdresser, a religious Catholic, asked her what Purim is all about.

They teach you stories about the holidays in Hebrew school, but you grow up, and if you don't keep up with these things, you forget.  And they sanitized the stories, is my guess, for kids, as I will right now.  Quickly, for I still have to make my costume.

The story begins in 423 BCE in Persia, when Vashti, wife to King Achasuerus, refuses to entertain the king's guests at a drinking party. Entertain, as in, dance with no clothes on.  Queen Vashti isn't in the mood for this or maybe she's read Simone de Beauvoir, and respectfully declines.   The king takes away her throne as punishment, orders a beauty pageant,  the local virgins should line up. One will replace Queen Vashti.

An orphan, Esther, wins the contest.  She is the niece of Mordechai, her guardian and husband-to-be, the most beautiful in the land.  Mordechai is a religious guy so he assumes there has to be a good reason for this turn of events.  A Jewish queen is not de rigueur, but off to the palace she goes.   (If you read the Phillipa Gregory novels, a guilty pleasure for some of us -hey, Jess!- you see that this sort of thing can just happen. Anyone can become queen if she is the most beautiful in the land.)

The king has many people in his court, many advisers. One particularly ambitious vizier, Haman, takes a dislike to Mordechai, better known as Mordechai the Jew, because Mordechai spends hours at the palace gates communicating with his niece via messengers. (No Facebook!)   Anyway, Haman, the son of Hamdata the Agagi, hates Mordechai the Jew because, chutzpha! Mordechai refuses to bow down to him when he passes through the gates to the palace.  You're supposed to bow to a vizier.

But it's not a Jewish thing, bowing to others.*
If you bow down to anyone, it would be to the Old Mighty.**

Haman, having sustained a narcissistic injury, such an insult! convinces the king that genocide, wiping the country clean of Jews, is a very good idea. The king, not even realizing that his wife Esther is Jewish, says, "Sure." The king drinks a lot, it seems, and trusts people who whisper in his ear.

When the Jews hear the royal decree-- they're going to be wiped out-- they do what Jews do.  They pray, they fast, and they strategize, get ready for war.   Mordechai has a talk with Esther, tells her to be a woman, convince the king to reverse the decree. "You can do it!"  Positive thinking.

She's reluctant.  Sounds dangerous.  Must be a better way.
Mordechai shrugs. "If you don't do it, the redemption will come from someplace else. Might as well be you."

Revah hatzalah, mai makom achair, in Hebrew, direct from the scroll, I think.   It's what I say a lot to my kids, to my family,  my friends. You can't quote from ancient scrolls in therapy or people will think you're very odd. 

But the redemption, the solution, will come from somewhere else. Precisely when we feel hopeless, when there seems to be no solution in sight, this is when we have to stop thinking that just because we don't see a solution, that there is none.  It's probably something not yet tried, or hasn't yet been considered.  It's out there somewhere.  We probably have to wait, or maybe just pick one and run with it, try it, then try another.  Or maybe it will come from some other place.  Or maybe we won't find the solution in this lifetime.  Find meaning somehow, in that.


End of story. It's a great holiday. We dress up in costumes, give money to the poor, replace trick or treating with gifts of food to our friends. The whole neighborhood wakes up, rejoices, because hey, a woman saved the day!  And some people take their drinking way too seriously on this holiday, don't even catch that part about the king.  But it is a tradition to rejoice until you can't see, which is easy for Jews who can't see anyway, and if they drink, pass out.

I knew there was something I forgot to tell her.


therapydoc


* People are people, we feel, but there is a special prayer we say when we meet a king or a president. 

**The Old Mighty is how my sainted grandfather referred to his Higher Power. His English wasn't the best.

Judging Mother

The trend in psychotherapy in the first half of the twentieth century was to blame the mother for whatever the symptoms expressed by anyone else in the family. 

Then in the fifties it became fashionable to blame mom and dad.  Father took blame for supporting mother's pathological influence, be it abuse or neglect, and sometimes for behaving poorly himself.  He was given a pass, however, on neglect, didn't have to participate in family life because: (a) he worked, and (b) guys aren't supposed to talk about feelings or ask about them. Certainly not when they're tired at the end of the day. 

Then in the sixties, seventies and eighties, family therapists caught on to the transgenerational system.  We noted that pathological behavioral and belief patterns are passed down, consciously or not, from parents to children.

So we searched the transgenerational family tree, blamed grandparents, great-grandparents, great-great-great grandparents, even uncles and aunts and distant cousins, way up to the top branches-- the ganztza mishpacha (Yiddish, sounds like fonts-ah- dish-puck-ah) --  the whole family.  We blamed the family system for awhile then finally decreed: No one is to blame. It is the family system that is to blame, family dynamics, patterns that repeat, unchallenged, year after year after year.

At some point we came to realize that no family system is an island, and if we're going to blame anyone, anything, we might have to blame the entire universe; for even people and events in the news affect our thoughts and behavior, as do our teachers and co-workers, the people in the grocery store.  So we added "search" to the ecosystem to find a systems diagnosis, and used that for system change.

But sometimes it is just so obvious.  It's Mom.  We really can blame her, although the tree, those teachers, the neighbors, might be culpable, too; and Dad could get best supporting actor.  But Mom has a corner on emotional power, that power to make us feel happy, or to make us feel sad, and sometimes she knows it, can't help but wield it. And it hurts all the more because, rightly or not, we expect more from women.  When our woman doesn't deliver, it is the unkindest cut of all.

We'll put aside our wide-angle lens when father does it, too.  We stop looking for patterns when one parent or another is consistently hurtful, is negligent or abusive consistently throughout the "child's" life.  We stop looking because the patient, no longer a child, is really, really sick and needs treatment, understanding and empathy, may be cutting or suicidal.

A narrative points to a story of disappointment, pain, insults and drama, a relationship that never healed properly, one that didn't turn out nice, not like parent-child relationships should.  No fairy tale here.

The therapist sees cause and effect and doesn't like it.  The patient has shopped, priced, and compared, knows that many, if not most people have mothers (fine, fathers, too) who are not insistent upon the child's independence, who care for them when they are sick, who praise, rather than criticize, who don't withhold love, don't slap.  The adult patient is thinking that at some point a human being should stop, should shape up, should become someone who knows how to give.  Parental.

In this process, while talking through the narrative, neither the doctor nor the patient wants to label anyone bad.We tiptoe around the word bad, play with deficient, unknowing, mentally ill, a product of his or her parents. Mama didn't know any better; she is an improvement upon her mama.

Mother's culpability only becomes an issue when reality steps up and delivers.A call from her, maybe, asking for money, or time. Maybe new information from a sibling or a cousin.  Someone posts an old family video, or a picture. Facebook.  Anything and everything can be a trigger.  The patient is going along, doing fine, minding her own business, feeling fairly protected, when suddenly anxiety is off the charts, defenses shot to hell.  Like a broken child, she voices it in therapy:  I'm alone.   I was used to it.  But it is so clear, so painful, how she never loved anyone but herself.  What does she want from my life?  Why can't she just leave me alone? I'm alone either way.

That existential dilemma.

Those of us who have healthy parents have tucked inside healthy introjects, representations of the good mom, the good dad, home and goodness, an identity that gets us through tough times.  When a parent has been grossly negligent, absent, deficient, or terrifying, the child has no positive introject, no soothing representation of family.  When there's nothing inside to lean upon, that existential dilemma, loneliness, becomes a crisis.  Save me, they say, silently.

Sometimes I think I see abandonment everywhere, in every relationship, or its dear cousin, narcissism, selfishness. None of us are perfect parents.  We can't always be there for our children, and sometimes we are all about us.  It's true.  But we try to keep that to a minimum, try to be there for our kids, and we express our love, our undying love.  True narcissists, and people who are sick, sometimes people with addictions, might not want to but they abandon their children.  They are the only ones in the room, the only ones with feelings that matter, and their children miss out, suffer a slow emotional starvation.

In a good therapy we do look for the love, try to find what's below the surface, forgotten good vibes.  We spend hours seeking love in the history, giving people the benefit of the doubt, and we may find splashes of it.  Or not. Or the pickings are just so slim we might look at one another and sigh, agree to abandon the search. 

When we do that, it's okay, it really is. A person can do very well without parents, can find others as mentors, can be loved, protected by someone else. We think we need parents to be secure, but we don't.  So much more goes into being secure.

It's very hard to get to that place, to let go, emotionally, to stop hoping for what might never happen. When there is a cut off, miraculously, the world does not stop spinning.  It even feels safer.  It might be inevitable if a parent isn't amenable to therapy, or won't work on the relationship, maybe has no resources.  Or family therapy didn't work.  Most therapists don't bother trying to work with older parents.  Instead, they become highly adept at engineering sturdier umbrellas for surviving adult children.

The triggers are what make the umbrella something to keep in the car because there seems to be some kind of direct neurological pathway between the Mother event in real time and cutting and thoughts of suicide.  The cutting is to leech the pain or to send the therapist, the good mom, a message. Save me.

I bring this up because it begs an ecosystem solution.  Because I don't want to do the saving, not by myself. We talked about this a little in How to Save a Life.

The modest proposal,  a solution to the problem of judging mother is empathizing with son and daughter.  Since they are unidentifiable, since we don't know who they are and there may be thousands of them, we must empathize with everyone in every social context.  This may seem like an impossible solution, for so many of us simply haven't got the chip, but we know that empathy can be learned, like we all learn a new skill, like stopping at stop signs while driving. Those who don't stop at stop signs will be harder sells on empathy.

I'm thinking people should throw it into conversation, should ask one another, Do you think I'm an empathetic person?  Responses are likely to be honest.   It's a relief, honesty.  Expect to feel defensive but good, for this is a teaching moment.

Empathy works like this in a therapeutic context:
1. Someone complains about Mother.
2. The good therapist only cares about that complaint and how it affects the individual.  It is all about feeling this person's experience, the therapist feeling the patient's pain.
3. Questions apply; answers do not. We ask in order to better experience the pain of the patient.
4. We ask more.  We want to know all about it. Empathy is not about giving answers or suggestions; it is all about questions.

When a person is triggered, distressed, it is safe to say that anyone can be therapeutic by staying with this person, this friend in need. And best is to let the friend go ahead and judge. There might be a few rules to keep in mind.

This is not the time to say,

Give the benefit of the doubt. 
There must have been a good reason for. . .
You might have done the same if you were in that situation.

Not therapeutic, and for a person who has been abandoned many, many times over, the benefit of the doubt is hollow, reasons shallow. And you're likely to hear:
No, I would not have done this, no matter the circumstances.With attitude.

This is not the time to say,

You have to let go of your anger.  Forget about it.

Or worse,

You should confront her. Let her know how you feel.

Send the sheep to the wolf, why don't you.

This is not the time to say,

Forgiveness is divine.

Forgiveness is a process, for some, a lifelong process.

This is certainly not the time to say,

What you should do is . . .What you should have done was . . .

It is a good time to say,

Tell me, tell me about your anger.
You have a right to your feelings.

It is safe to believe that these feelings don't come out of nowhere.

There is a proverb, maybe a mishna (Google it) that says,

Don't speak to a man when he is angry.

The cutting, the suicidal behavior, this comes from a very angry, sad place.

Once the anger and sadness has lifted and healing is palpable, in therapy we talk about alternative narratives. We might rewrite the script, employ visual imagery, all kinds of cognitive behavioral interventions.

Wouldn't it have been great if you could have said. . .?
Why don't you put her in the chair and talk to her, tell her how you feel?

You can do that too, after the anger is gone. Timing is everything. Just be sure not to trigger your buddy again. Less said, seriously.

For it really is okay to judge someone, and it's more than okay, it is therapeutic to let another person judge. Even if it is the very same person who brought him into the world.

therapydoc

PS:  If you judge someone's mother, you're taking a huge risk.  I can say whatever I want about my mother, but you better well not.  That's my mother you're talking about.

A Little Help

I have no idea why that old post (titled Coming Out, September 2010) was sent to those of you who subscribe by email.  I'm spooked, seriously, and apologize, took it down.  Does anyone have an answer?