Tag: autism

Carrying the Hope Part 2

Carrying the Hope Part 2

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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Carrying the Hope, Part 1

Carrying the Hope, Part 1

By Alexandra H. Solomon, PhD

Carrying the Hope, Part 1
Autism Spectrum Disorders: A report from the trenches

“Mom, you have to come and look at my poop!” Brian yells, running back into the office where Fran, his therapist, and I are patiently awaiting his return. His blue eyes are shining, he grins from ear to ear. He gestures to me (“come here!”) and then runs and grabs my hand. When I arrive at the potty, I glance at the specimen and then at Brian. His eyes are glued to me, anticipating my reaction. I smile, he laughs and spreads his arms wide, “it’s the longest snake ever!”

Such a moment might not strike everyone as so wonderful, but to me it is utterly amazing—and on so many levels. When he was 26 months old, Brian—now six–was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), which is an Autism Spectrum Disorder (ASD) falling somewhere between Autism and Asperger’s Disorder. Although even then he was considered “high-functioning,” he was dealing with some pretty significant problems for such a little guy. He had painfully sensitive ears (auditory hypersensitivity), no interest in other kids, aggressive behavior toward himself and others, scripted language, limited play skills, minimal social referencing, chronic diaper rashes, and continual gastro-intestinal problems, vacillating between constipation and diarrhea.

Now, at six and a half, thanks to intensive early intervention that was truly biopsychosocial in nature, Brian is making great strides. His current diagnosis is Asperger’s Disorder, rather than a PDD-NOS diagnosis. Also, not only have his physical/medical problems improved dramatically, but he is now competent enough at relationship skills to want to show me something he made, to figure out how to get me to come see it, to wait for my reaction, to celebrate with me, and summarize the whole event with a declarative statement.

When Brian asked me to come and look at his poop, he was not trying to get me to do something for him or make something happen. He wanted me to share an experience with him purely to share it. He also used gesture, engaging in non-verbal communication both receptively and expressively, which even six months earlier he simply could not do. This level of social referencing (defined as the ability to read, recognize, interpret, and respond to others’ facial expressions and tones of voice), coordination, and experience-sharing is extraordinarily difficult for a child with an ASD. Odd as it may sound to those unfamiliar with Austism Spectrum Disorder kids, what Brian did is a very, very big deal.
Mommy instinct: Something is not right

Brian’s first year of life was unremarkable—marvelous to his mom and dad, of course, yet unremarkable. He met all of his early milestones on the late side of normal and was social and sweet. At his 15-month well-child visit to the pediatrician, he received a clean bill of health and (I now believe) a fateful combination of two vaccinations— the measles, mumps, and rubella (MMR) shot and a flu vaccine. After the vaccinations, he spent the next three months sick more often than he was well. He battled bout after bout of diarrhea and became extra-sensitive to sound. He seemed tense a lot of the time and preferred repetitive solo play—pulling the books off his shelf and “reading” through them over and over in the same way. He also started to pull hair—my hair as well as the hair of the moms and kids at music class. He didn’t seem angry when he did it, just tense.

However, by 18 months, he could count to 100, knew all of his letters, and was beginning to do phonics (“Brian, what letter does ‘lavender’ start with?”). Nonetheless, at his 18-month visit, I asked his doctor how I would know if he had Autism. She said, “Does he point?” I said, “Yes.” She said, “He doesn’t have Autism.” I was relieved.

As I look back on this interaction, I realize how much the doctor really missed the mark with her cursory screening attempt. Brian did point (“Where’s the cow?” I would ask, and he would obligingly point at the cow in the picture), but he was not demonstrating joint attention in an age-appropriate way. Joint attention, a readily mastered milestone for a neurotypical child, means that the child looks at something—a balloon that has captured his interest, for example—then at mom to make sure she sees it, then back at the balloon. This attempt to engage with his mother in joint attention¬—hers and his together–is lacking in a child with ASD, and it is an important diagnostic indicator.

At Brian’s two-year-old visit, I expressed clear concern. Brian hated being around other children, he was self-injurious when frustrated (biting himself and sticking his fingers down his throat), his hearing was painfully sensitive, and he was crazy-good at math (at that point he could identify any three digit number, and he was beginning to add). I didn’t consciously know what to call this, but the combination frightened me. The doctor simply told me that he was a math genius and that I needed to become a better disciplinarian. “Everyone has quirks,” she said breezily.

There’s a name for it

After another week of comparing my son to similarly situated children and feeling with every comparison that something just wasn’t right, I called my pediatrician again. She told me that she had actually been thinking about Brian too and that we ought to seek an occupational therapy evaluation in order to rule out a “Sensory Integration Disorder.” I had never heard of this, and it did not appear anywhere in my DSM, but we went ahead with the evaluation at a local clinic.

The occupational therapist decided that yes, in fact, Brian suffered from, “auditory hypersensitivity, low muscle tone, motor planning delays, and vestibular and proprioceptive hyposensitivity [low responsiveness] ” The vestibular system, located in the inner ear, controls head and body movement, balance, and posture and also influences other sensory systems. The proprioceptive system refers to information from the joints, muscles, tendons and ligaments telling you where your body is located in space. According to the occupational therapist, Brian attempted to make up for his under-responsive vestibular system by seeking out swinging, jumping, and sliding, but would become overwhelmed by the stimulation and then upset. He attempted to compensate for his under-responsive proprioceptive system by seeking intense experiences of physical contact, squeezing or being squeezed, jumping, crashing, and pushing (usually other kids!). In short, there were multiple ways in which his sensory system was skewed, resulting in anxiety and behavior problems. The recommendation was for two hours a week of occupational therapy at the clinic. We were sad and a bit confused, but we started the therapy as instructed.

Still seeking more information, I reached out to a colleague of mine, a psychologist, who specializes in working with children, and she recommended that we seek a full neuropsychological evaluation in order to check “all of Brian’s lines of development.” OK. We headed to a neuropsychologist at a well-known clinic, specializing in neurobehavioral problems. On the way home from the first session, which included some assessment of Brian and some interviewing of me, I began to panic as I replayed her questions in my mind: Does Brian have language anomalies, like reversing his pronouns? Does Brian use gestures like nodding and shaking his head? Does Brian spontaneously direct your attention in order to show interest? I knew that I was answering nearly all of her questions “the wrong way,” indicating a less-on-track rather than more-on-track child. I got home and opened my DSM to the chapter I feared the most, the chapter on Pervasive Disorders of Childhood. I called my husband sobbing, “This neuropsychologist thinks it’s autism. Holy shit, she thinks it’s autism!”

Indeed, on November 9, six days after the birth of our second child, Courtney, we were told that Brian met the criteria for a “provisional diagnosis of PDD-NOS.” Reality sunk in only slowly over days and weeks. I hear this frequently from parents of children like Brian. The mind and the soul cannot take in all of the meanings, feelings, and unknowns at once–it is too disorienting.

Reality bites
Those early months post-diagnosis are an existential mess for all parents, and they tormented me. As we started to tell family and friends, no reaction was the right reaction. I remember my mom’s cheerful voice telling me, “He is FINE! He is more than fine. The only problem Brian has is that he’s too smart for his own good!” But, we had just been told that he was not fine, and her reaction hurt me–it felt like an invalidation of the struggles we were up against. On the other hand, I remember my step-mother’s heavy voice telling me, “My heart is breaking for you. I am just so sorry for you.” Her reaction hurt me too. Her heart should not be broken—this was not a death sentence. We’ll get him what he needs to catch up, I told myself stoutly, and he’ll be “indistinguishable from his peers” by kindergarten (the often repeated goal of early intervention).

True, Brian was still the same boy he had been before the diagnosis, and I resisted looking at him differently. Yet, he also was not the same boy. He was now a boy who could not and should not be expected to do what other children do. I could feel the ways in which the diagnosis, the label, was becoming a lens through which I experienced him. Autism was beginning to infiltrate everything.

*We had always laughed about how Brian’s transitional objects were never stuffed animals or blankies. Related to his deep and abiding love of numbers, his favorite form of comfort always came in the form of an “8”—an 8 of clubs from a deck of cards was the best, but sometimes a magnetic refrigerator 8 or even a hair elastic twisted in half could do the trick. Indulging the love of 8s was now tantamount to reinforcing the autism, but not allowing him to seek comfort with an 8 felt cruel. I was stuck. The 8 of clubs now seemed symptomatic of the autism because one of the DSM criteria is about “restricted interests” for example being “highly attached to some inanimate object.”*

I also had become my own worst fear– the mother of a child with special needs. I remember, long before I became a mother, seeing the mothers of disabled children and pitying them—how shameful for me to admit. And, it was autism I feared the most. The little that I did learn in graduate school about it terrified me. How could I survive having a child who was not responsive, who could not give love? Of course, my stereotype of autism was skewed. I have never met a mother who described her child with autism as unable to give love. But, long before I faced autism, I feared it deeply.

Thankfully, there is just too much to do post-diagnosis to wallow for long in grief and anxiety. The neuropsychologist told us that there is a limited window of opportunity for effective early intervention and that in order to minimize the impact of Brian’s disability (I could not believe that I was hearing that word!), we would need to start therapy right away. She also told us that his young age, his ability to use language, and his apparently normal intelligence all worked in his favor. In a few years, she suspected, he would meet the criteria for an Asperger’s Disorder diagnosis: he would be high functioning, whatever that meant.

We wanted a crystal ball. We still do. Would he need special education? Would he make friends? Would he go to college? Would he live independently? The last question is still the most terrifying. I still cannot hold in my mind for more than a moment the image of my son living in a group home. He simply must “get better.” The neuropsychologist, of course, could not answer any of these questions. She could only tell us the list of services that he would need ASAP. Her initial recommendation was for individual developmental play therapy, a play therapy group, speech therapy, and occupational therapy. She had some ideas about which local clinics we could contact.

The next month was a blur of phone calls, initial appointments, sleepless nights with a newborn, and hours upon hours spent on the computer trying to understand this world we had just entered. The neuropsychologist had suggested that we limit our internet research as there was a lot of misinformation out there. That was the only recommendation that I did not and could not follow. I was glued to the internet and on a steep learning curve. The quest for information functioned on multiple levels. Doing it contained my anxiety and also gave me enough confidence to trust my instincts about providers, navigate the tricky shoals between contending treatment philosophies, and decide upon a way to proceed that made sense for me.

To be continued………

Please look for our next installment when we learn about the therapies that the Solomons selected, how Brian responded and how the family has been doing.

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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Why we need to show up

Why we need to show up

By Lisa Yauch-Cadden

“Why we need to show up”

As we mentioned in our welcome to this website, Speech Language Pathology can be a profession of great joy, and great loneliness. Often, as sole practioners in schools, hospitals, rehab centers, medical/private offices, and home care settings, we may be the only source of speech and language services available to a child or adult in our community. I have personally worked in hospitals, with no out-patient treatment services, skilled nursing facilities with no/poor access to home care services, schools where families cannot afford additional services through out-patient clinics, and in out-patient settings, where support from the school system has been limited. I have also known clinicians who, all by themselves are the hospital based SLP, the homecare SLP, the school therapist and the out-patient provider. In these situations, we have a huge responsibility to our patients. We may be the only one to diagnose and treat a patient’s problem, or provide a family or physician with needed information. Yet, over the past several years, I have noticed more and more therapists, not taking these responsibilities so seriously.

I have known therapists to cancel appointments for convenience or to avoid a patient with behaviors, therapists that utilize the same treatment approach with multiple patients regardless of individual needs, and utilize the same treatment materials with the same patient, over and over, and then blame the patient when he/she doesn’t make progress. I have worked in facilities where staffing required multiple SLPs to service the same patient on different days, and because no single SLP felt responsibility for the patient, (they were “just covering”, after all), the patient failed to make progress. I have met with indignant therapists, astonished that a payor source would require accountability, prior to paying for services, and I have seen talented therapists leave the field, because they did not want to play by a new set of rules.

In all of these instances, I am reminded that, while as therapists, we think that Speech Language Pathology is about us – our skills, our expertise, our credentials. It is not. It is about the patient. Every client that crosses our path is referred to us, because someone who cares about that person has a question or a concern that needs to be addressed. Someone in that patient’s family, desperately wants them to get better, and often we are the only ones to whom they can turn. We cannot phone it in. We have to show up.

When Mrs. Jones sends her 3 year old autistic son to the school or the out-patient clinic, she is putting her baby in our hands, and hoping for progress. When the homecare clinician sends her patient for an MBS/FEES, she is looking for specific information on the nature of that patient’s dysphagia, as well as recommendations for intervention. When Mr. Smith, an 88 year old man enters the skilled nursing facility for rehab, he is relying on us to understand his Medicare benefit, and entrusting us get him the services he deserves. When we think it is beneath us to be told to provide 35 minutes of care or make sure that we see a patient on Thursday vs. Friday, or write a note that conveys an appropriate level of service, we only hurt the patient, and put them at risk for losing the services, to which they are entitled. And when we cover multiple facilities/multiple patients with multiple clinicians, we need to be responsible for our session, and advance the treatment plan. It is our responsibility to understand our patients’ problems and their payor source and provide skilled intervention to meet their goals.

Now, I know it is hard to bring your ‘A’ game every day, and there are lots of forces that conspire against us (family, kids, traffic, heavy caseloads, limited access to materials, uncaring bosses, budget cuts, etc.). Sometimes patients are needy and families are unrealistic, and our caseloads are unending, and on some days, we have to leave by 3:00 p.m., no questions asked, but we owe it to our patients to try our best, everyday, and honor the implied trust between us. If the situation were reversed, we would expect nothing less.

About the author

Lisa Yauch-Cadden was born and raised in the Detroit, Michigan area. She has a Bachelor of Science degree in Biology and a Master’s in Speech Language Pathology from the University of Michigan. She has worked as an SLP in nearly all facets of the field: skilled nursing facilities, home care, acute care, transitional care, medical offices and schools. Throughout her career as a therapist, manager and business owner, Lisa has never strayed from providing direct line service, including state of the art evaluations using FEES/FEESST and MBS. While she needs no accolades to do her job, she is deserving of many. Her tireless efforts to advance the best clinical practices in Speech Language Pathology have changed lives for her patients, her clinical fellows, and those of us lucky enough to work with her on a regular basis. Contact Lisa at lycslp@gmail.com.

If you have something to say, please submit your article for consideration to lycslp@gmail.com.…

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