Mom's Corner — July 25, 2012 at 3:33 am

Carrying the Hope Part 2

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by Alexandra Solomon, PhD

In this segment, Alexandra shares her journey into treatment for her autistic son, Brian, with inspiring results.

As families create a treatment plan for their child, they face decisions that are financial, practical, and philosophical—a real maze!  In my experience, an hour of Applied Behavioral Therapy (ABA)—the most researched approach, but not the one we finally committed ourselves to–costs between $55 for a paraprofessional to $135 for a Masters level speech therapist.  The costs of having a child on the autism spectrum can be staggering, even if you don’t go with the 40hours/week ABA approach. At one point, we were paying almost $60,000 out of pocket per year, including therapy, special diets, supplements, and school costs.  Health insurance covers very few of these expenses.

Quarterbacking the treatment team

My husband, Todd and I recently, over a bottle of wine, played a fun game…. “Name that therapist.”  We laughed, in that half funny–half morose way, as we named every “expert” we had consulted over the last four years.  I won’t even tell you how many we counted, but I will say it was well more than 30!

First let’s talk about healing his body.  It hadn’t taken us long to start to explore the vaccine-autism connection.  Within four months of Brian’s diagnosis, the potential connection scared us enough that we were sitting face to face with one of the world’s foremost Defeat Autism Now! (DAN!) physicians, Dr. Anju Usman, who used clinical observation and lab work, to determine that Brian’s immune system and gut (80% of our immune systems lives in our guts) were pretty badly damaged by the 20+ vaccines he had received in the first two years of his life.  He had overgrowths of yeast and bacteria, very few of the so-called “good” bacteria, hyperimmune responses to several viruses, heavy metal buildup, a “leaky gut,” and rampant food allergies.

We implemented a long list of daily supplements and began the Gluten-Free- Casein-Free (GFCF) diet.  I affectionately refer to this time in our journey as the closest I ever got to a psychotic break!  Making sense of what it means to have a child with special needs is difficult enough.  Thinking about “what might have been” if we had not allowed him to be vaccinated in that way is simply too much.  Taking on “biomedical treatment,” as well, added another complex plot twist to a narrative already almost too demanding and convoluted for my mind to encompass.

Families who believe their child’s ASD is the result of “faulty genes” may curse their bad luck.  But families who believe their child’s ASD is the result of an underlying genetic vulnerability that was ignited by early, intense insult to the immune system through vaccines and other pollutants must then come face to face with choices they made on behalf of their child.  I have carried anger at myself for not having questioned more, and I carry a lot anger at pediatricians and others in the medical establishment who ought to be much more careful about our rapidly growing, poorly researched, and one-size-fits all vaccine protocol.

So, I began this GFCF diet kicking and screaming.  I agreed to try it for 3 months.  I circled June 1st on my calendar, and I lived for that day.  Figuring out what to feed an already picky two and a half year old was no fun!  Four sippy cups of milk a day?  Replace with diluted, organic vegetable juice.  Toaster-ready pancakes?  Replace with rice and amaranth pancakes made from scratch, with allergen free chocolate chips and ground flax added for good measure.  Mac and cheese?  Replace with nothing.  There is just no good way to make GFCF mac and cheese!  I have never been the Martha Stewart type, but I was buying cookbooks and trying new recipes each day.

June 1st came and we had not only survived, but—in spite of Brian’s continual complaining about the diet (particularly about losing his beloved mac and cheese) he had definitely improved.  In those three months, he had gained some much needed pounds and inches after having stagnated on the growth charts in the months previous.  He had made nice language gains, increased his eye contact, his poop was normalizing, and his sensitive ears were bothering him less.  All this was great. There was only one piece of bad news, which my husband broke to me over another bottle of wine:  “Al, you know we have to keep doing this diet.”  “I know,” I sighed. To this day, Brian remains gluten and casein free.  He is also egg-free, soy-free, citrus-free, and free of all artificial colors, flavors, and preservatives.

Healing Brian’s gut has made Brian less autistic, and removing offending foods certainly played a huge part.  Dr. Usman also used anti-biotics to reduce some nasty bacteria in his gut.  When that bacteria was under control, Brian stopped hitting, scratching, and pulling hair.  Amazing!  While some doctors need to reduce their child’s heavy metal burden through drug chelation, Brian’s doctor has been able to take a less invasive approach and support Brian’s detox pathways with supplements so that he can detoxify himself.  It is interesting to note that recent research has shown that children with Asperger’s disorder are less metal toxic than children with full-blown autism (Natef, Skorupka, Amet, Lam, Springbett, and Lathe, 2006).

We have learned to manage Brian’s physical health much the way parents would who had a child with diabetes.  We think of him as having a chronic medical condition.  When the medical condition is well-managed, it recedes into the background.  When we see old behaviors return, we look at what might be getting out of balance in his body, and we make a plan about how to correct it.

RDI Therapy:  Remediating the core deficits of autism 

In addition to repairing Brian’s “hard drive”—the term often used to refer to brain structure and biochemistry—we are also working on his “software”—his development, behavior, cognition, and psychology through various kinds of therapies. There are three distinct ASD treatment worldviews:  Applied Behavior Analysis (ABA), Floortime (DIR), and Relationship Development Intervention (RDI).  Our research and personal experience led us to feel most connected to RDI.

RDI therapy was developed in the late 1990s by Steven Gutstein, a clinical psychologist with a background in family therapy.  He observed that Autism Spectrum Disorders “belonged” much more to the world of developmental disabilities than to the world of developmental psychology or family therapy.  By breaking down typical development into infinitely smaller milestones and examining those closely, Gutstein was able to create a way of thinking about ASDs that goes far beyond the DSM’s description of symptoms.  For example, children with ASDs frequently demonstrate average or well-above average ability when it comes to static (rote) intelligence, but show deficits related to dynamic intelligence.  He identified five “core deficits,” both unique to autism and descriptive of all children on the spectrum regardless of level of functioning.  These five core deficits are in declarative communication, referencing, regulating, episodic memory, and flexible thinking.

To address these core deficits in dynamic intelligence, Gutstein created a clinical treatment program that trains parents to teach dynamic intelligence skills and motivation to their child.  Rather than using concrete rewards and reinforcers, RDI teaches the joy of connecting and helps people on the autism spectrum learn how to express friendship and empathy and to genuinely love sharing their world and experiences with others.  Although RDI is relatively new to the scene, early research is promising.  Within 18 months, over 70% of children in an initial study improved their diagnosis based on the Autism Diagnostic Observation Schedule (ADOS). The majority of children also moved from a special education to a regular education classroom without needing an aide (www.rdiconnect.com).

Although parents are the guides and children the apprentices in this work, usually families meet with an RDI certified consultant once every two weeks.  Using a structured 4 session assessment protocol, the RDI consultant determines the child’s current developmental stage, usually Stage 1.  As is the case with each of the stages, within Stage 1 there are over 20 objectives the child must become competent with before progressing to Stage 2.  Families tackle one developmental objective, which is right at the child’s learning edge, at a time.  In addition to work directly related to the current objective, families commit to adopting overarching lifestyle practices like:  waiting until the child is oriented to the parent before the parent begins to speak to him and utilizing 80/20 ratio of declarative to imperative language.

RDI work takes the form of parent-led activities usually in the home.  Work is documented by parents, using video and narrative, so that consultant and parents can track progress toward mastery.  For example, in Stage 2, a major objective is, “you have meaningful dialogues with your partners, where you both use only your gestures to communicate.”  When we were working on this objective, one of our games was “traffic cop.”  Brian and I would put whistles in our mouths to keep us from talking, and we would then take turns letting the other guy know when it was time to come closer, go farther back, move slowly, move quickly, etc.  I would make sure that we did this work in a quiet space with minimal distractions, and I made sure to spotlight excitedly that I could tell exactly what he was “saying” just by watching his body.  It was remarkable to watch Brian gain confidence in this alternative communication modality and to see him generalize it to other settings.

We have been doing RDI therapy with Brian for almost four years now, and we have seen significant remediation in each of these areas of core deficits.  RDI therapy is the hardest and most rewarding work that Todd and I have ever done.  It is basically uber-parenting—parenting that ideally is always mindful, always well-paced, always at the child’s learning edge, and always dynamic—and it is this parenting (or as close to it as merely mortal parents can do) that children with ASDs need.  Allow me to take you into my messy RDI world….

I am sitting at the monthly RDI parent support meeting feeling like a disaffected pre-teen, arms crossed, rolling my eyes at my friend, Samantha, who is sitting across from me. This is not my usual M.O., not here, not anywhere.  I adore our RDI consultant, believe fully in the program, and consider myself a fairly mature adult, so what’s my deal?

The topic of this particular meeting is “appreciating messiness.”  The consulting staff is working with this group of moms and a few dads to figure out how we can incorporate more messiness into our lives in the service of helping our ASD kids appreciate the messiness (literal and figurative) of relationships and of the world.  In fact, we are broken into small groups and sent into therapy offices to make a “stew” with ingredients like oil, flour, liquid soap, toothpaste, oatmeal, and salt.

Later in the meeting, we are given a handout with suggestions of messy activities that we can try at home like filling balloons with shaving cream and water, having a snowball fight with crumpled paper, painting a mural, eating breakfast for dinner.  The idea that still sends Samantha and me into fits of laughter months later is to create a sand pile instead of a sand box.  It goes like this:  have a truckload of sand delivered to your backyard, play all sorts of messy games on the mountain all summer long, and order new truckloads every few years.  This is the messy idea that makes me really mad.

The nature of my anger is complicated.  I absolutely agree that ASD kids need lots of opportunities, far more than typically developing ones, to experience messiness in the safety of their own homes with their primary caregivers before they can be expected to competently handle the messiness of the world.  And I absolutely agree that ASD children’s difficulties with messiness operate on many levels.  Messes like putting your hands into a bowl of toothpaste and flour can be overwhelming to an ASD child’s already skewed senses.  Such messes upset an ASD child’s black and white notions of where toothpaste belongs and does not belong.  And, making messes like that requires joint attention and the sharing of the experience if the mess-making is to be meaningful and fun.  I absolutely agree that making a messy stew with my ASD child is a great idea.

But then I start to really examine the RDI consultants’ message, which sounds to me as if I, an ASD parent, need to be encouraged to loosen up and get messy.  OK, fine.  But, at the emotional level, the message seems to imply that my kid has an ASD because I can’t loosen up.  And, maybe they think that my kid’s ASD will get better if I can just loosen up.  This all sounds suspiciously like blame and makes me feel defensive as hell.  My rational self trusts that the RDI consultants respect me as a mother and do not blame me for my child’s ASD, but my irrational self is having a field day!  I start thinking about friends of mine who are far more neurotic than I—friends who don’t allow finger painting indoors, friends who rub Purell on their kids hands at every turn, friends who would never tolerate the shaving cream treasure hunts and mud pies that we enjoy at our house.  These friends aren’t sitting on the floor with other grown ups making oatmeal stew.  These friends, in fact, are raising kids who are the poster children of typical development.

Fast-forward a few months.  I attended one of Gutstein’s two-day RDI workshops.  By way of empathizing with ASD parents, he said something like, “Parents of neurotypical kids can do a relatively mediocre job and their kids will turn out just fine because the force of typical development is very powerful.  Parents of ASD kids have to do an A+ job nearly every day in order to help their kids bypass and work around their ASD.  That is exhausting.”  This was an “a-ha” moment for me, offering me some clarity about my anger.  The biggest difficulty, for me, in parenting an ASD child is not the financial strain or the chronic worry.  It is the high demand to bring my “A game” into play every moment with Brian every day.

In my heart, I believe that I am Winnicott’s “good enough” mother.  In my heart, I believe that I was and continue to be empathically attuned enough to Brian.  That was not enough to prevent Brian’s ASD, and it is probably not enough to remediate it.  Parenting Brian requires vigilance and creativity far beyond parenting Courtney, who meets and often exceeds my level of engagement with her.  She came into this world ready to dance relationally, but Brian must practice each micro-step of that dance over and over in order to become competent.

He deserves parents who have the energy and the persistence for all of that practice, and I lie awake frequently at night re-playing the day’s missed opportunities and rushed interactions.  Did I offer him 80% declarative language?  Did I wait to speak to him until he was oriented to me?  Did I properly reduce external demands on him so that he could experience productive uncertainty?  Did I share with him my self-narrative so that he can continue to master the complexities of inter-subjectivity?  Never well enough it seems.

Why him?  Why me?  Why us?

Autism not only transformed me as a mother, it transformed my marriage.   I think about standing with Todd under the chuppah ten years ago.  We were bright-eyed and optimistic 25 year olds, ready to tackle any challenge that came our way.  Certainly his law degree, my doctorate in psychology, and our endless conversations about our relationship would protect us from both the expected and unexpected challenges of marriage, right?  Even the 50% divorce rate didn’t scare us— I am a marriage and family therapist!  We knew our strengths and our “growth areas” like the backs of our hands.

Parenting brought some unexpected challenges.  Who knew I could use such foul language at 3 AM when requesting help from Todd to change Brian’s diaper?  But I think we both agreed that we handled the transition to parenting fairly well overall.  It was the transition to special needs parenting that rocked us to the core.  Under the chronic stress of raising a child with special needs, everyday annoyances begin to feel unbearable.  Emotions are too raw, and fear is too palpable to be able to handle a tiff about a forgotten errand or an unrecorded check.  Those “growth areas” turned into painful triggers.  Todd said recently that he feels that autism takes all of a marriage’s inherent vulnerabilities and amplifies them.  I agree.

I remember one night, Todd walked into the family room where I was watching a news program.  It must have been a story about the pharmaceutical industry because I launched into a rant about how corruption and greed have hurt our child.  Todd looked at me and said, “I find your rage really unattractive.”  Ouch!  Todd would readily admit that he always been drawn to my affect, my expressiveness, my passion.  But around Brian’s ASD, my passion about the dangers of the drug companies hits him too close to home because we have taken up different narratives about why Brian is the way that he is.  My narrative looks back at my choices, and my narrative gets political.  Todd’s narrative does not look back.  Todd’s narrative takes what is, in this moment, and tries to cope.  I have long admired and needed Todd to be level-headed and unflappable, but around Brian’s ASD, his ability to just “accept what is” bewilders me.  Our different storylines have been difficult for us to reconcile.  I suppose I would say that we try to “witness” each other’s stories, but I think mostly we try to focus on our points of similarity and connection.

Our relationship was built upon a deep appreciation of each other’s senses of humor, and autism has been added to our repertoire.  We have a lot of mordant humor.  Some of the things we say to each other, jokes that we find healing and hilarious, can never be repeated outside of the confines of us!  OK, fine, I can share one example.  While the holidays the last year or two have been very happy and overwhelmingly positive for our family, in the early years, we had been known to dictate to one another the text of a fake “Holiday Letter” to friends and family.  For instance:

“This year we were thrilled to drop $60,000 on a variety of complicated therapies only to be told ‘it’s a long road ahead, but you guys are doing so much good.’  Our Christmas miracles this year were nearly complete social isolation and 382 viewings of ‘The Wiggles Safari.’  Another gift was Brian’s new habit of pulling his sister’s hair every time she cries (as you know, newborns rarely do that)!  And finally, it would not be the holidays unless you could cozy up to your spouse.  Check that, we have not been intimate in a while.  Best wishes for a less miserable new year!!!  Todd and Alexandra.”

Is this appropriate?  Definitely not.  Is this ability to make light of your pain in a manner that connects you with your partner healing?  You’re damn right it is.

We also connect with each other around a sense of isolation and “different-ness.”  Coming home from a birthday party at which your child was the only one who ran screaming from the room during “happy birthday” stings less when you can share that place of honor with your partner.  Further, we frequently feel alone together in our worry about Courtney’s journey.  We feel pride and sadness when we see Courtney helping her big brother put his shoes on.  We know about the problems of special needs siblings, and we want her to feel neither invisible nor like a third parent.  We also know that our hard work healing Brian is, in part, an effort to protect Courtney from having to bear responsibility for him in the future…. a terrifying possibility that we rarely voice.

The bottom line is that, like any kind of adversity that a marriage can face, our journey with Brian has given us opportunities for intimacy that we would not otherwise have had.  When I watch an RDI video that Todd and Brian have made together, I swell with pride at how much Todd “gets” Brian.  When I offer an autism workshop or mentor a parent of a newly diagnosed child, I know that Todd feels proud that I have found some adaptive ways of coping with my pain and anger.

Carrying the hope

I remember sitting in my own therapist’s office after Brian was diagnosed and trying to figure out what I was supposed to “do” about this ASD.  I remember her saying that my most important job as Brian’s mother was to “carry the hope.”  These words come back to me frequently as we face decisions about biomedical options or school placement or how to set expectations of him.

I carry the hope that we, as a society, can turn the tide and curtail this epidemic.  The vaccine-autism connection is strong, and more and more people are questioning the safety and efficacy of the current schedule.  As for my Brian, I carry the hope that he will someday read this article and be mortified that I wrote about his poop!  I carry the hope that I will dance with him at his wedding and hold his newborn in my arms.

Last week I had the chance to hang out at recess with Brian and his Kindergarten buddies.  Brian and three other children were engaged in a game that seemed to be called, “Rescue me, I’m dead.”  When Ethan yelled to Brian from the top of the jungle gym that he needed rescue due to the fact that he was, in fact, dead, I watched my boy, my sweet, blue-eyed boy, climb competently and confidently up the ladder… “I’ll save you Ethan.  I just have to get across this hot lava.”  A far cry, indeed, from the boy who used to read license plates in the driveway while the neighborhood kids played.  I carry a lot of hope for Brian.

About the author

Dr. Alexandra H. Solomon is a licensed clinical psychologist and a clinical lecturer in Northwestern University’s Masters of Science in Marital and Family Therapy program. She received her PhD in Counseling Psychology from Northwestern University, as well as a graduate certificate in Gender Studies. Dr. Solomon has developed expertise in the areas of couples, families with special needs children and group relations/ dynamics. She has published a number of articles, most recently about parenting children with Autism Spectrum Disorders (ASDs). She has presented nationally on this subject and consults to the media on topics related to marriage and family. Dr. Solomon is a member of the American Psychological Association (APA) and the American Family Therapy Academy (AFTA). In her free time, Ali can be found enjoying hip hop dance, running, biking, swimming and competing in the occasional triathalon. Contact her at asolomon@northwestern.edu

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One Comment

  1. Nice article Ali ! It is great to hear your son is doing well! Carry the hope and the expectation !

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