April 2, 2016

World Autism Awareness Day

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , at 7:21 am by autismmommytherapist

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Today is the tenth official World Autism Awareness Day, and as I watch my eldest son with severe autism rearrange his bucket of toys for the zillionth time I can assure you, I am very aware of autism.

The great thing is though, the rest of the world is now too.

In past years I’ve written about my youngest son’s burgeoning awareness to his own form of autism, and about moving from awareness to acceptance, and yes even to celebration of certain aspects of my boys’ disorders.  I’ve also written about amazing advocates in our area, and talked about my own advocacy, and what it means to me to “light it up blue.”  I’ve talked about how far the boys have come in the twelve years since my eldest was diagnosed with severe autism, discussed their progress as well as the fact that despite two autism diagnoses in our household, we do indeed have a happy family.

But I’ve never spoken about one entity that helped us get to that peaceful place.  And that entity would be Autism Speaks.

Many years ago we were desperately searching for a practitioner who could help us with our eldest son’s aggression, and failing miserably in this endeavor.  One day my mom came across an article about Autism Speaks’ ATN, or Autism Treatment Network, a program affiliated with CHOP (Children’s Hospital of Philadelphia) not far from where we live.  Within minutes of meeting Dr. Amanda Bennett we knew we were home, and we’ve been using her services (and those of Lindsey Widmer) ever since.  It was the first place we’d been to since our visit to Kennedy Krieger years ago where we felt our concerns were listened to, were validated, and where we actually walked out with a plan of what to do next for our boy.

Needless to say, our gratitude toward Autism Speaks began that day.

We were again beholden to the ATN a few years later when our youngest son decided sleep was for sissies, and we were able to engage the services of an ATN nurse, Margaret Souder, who made house calls (!) and helped us to get our boy’s sleep schedule back on track.  We’ve followed her instructions for years, and now our boy gets ten hours of shut-eye about 85% of the time (yes, I’ve tracked it, I’m that A-type,) which has benefitted both him and the rest of his family greatly.

His momma needs her shut-eye too.

Autism Speaks has helped us financially too.  Their initiative to mandate that insurance companies must cover autism therapies like ABA helped us when we relocated to New Jersey from Virginia.  During Justin’s early years we had spent thousands of dollars on his in-home program because Virginia only offered us six hours of occupational therapy and two hours of speech a month, all with more than a year to go before Justin would be eligible for a school program. We were on the hook for all of his ABA services, most of which I delivered myself so we wouldn’t go bankrupt.  Since we moved up north all of his therapies have been either fully or partially covered, a fact for which we are grateful too.

Autism is expensive.  Having coverage for necessary therapies is invaluable.

And last, but definitely not least, Autism Speaks is a large part of a movement that has made autism a household word, which has opened worlds of awareness and acceptance, has made navigating the often difficult waters of autism easier for this family.  I saw the tide start to change ten years ago when I began talking about our son’s diagnosis, saw without fail the compassion and understanding in people’s eyes when I sometimes had to explain our boy’s behavior in public.  I am certain some of that comprehension came from Autism Speak’s global approach.

So today, as I make sure my blue porchlight is still working, I just want to take a moment to say thanks to Autism Speaks for all they’ve done for my boys.  We have our struggles here still, and I anticipate we always will.  But in general my two sons are safe, happy, and productive, three things I made a priority for them before they were even born.  I am grateful to Autism Speaks for helping this family get to a place of peace.

And my wish for you is that you get there too.

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October 7, 2014

Sleep, Glorious Sleep

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , at 2:07 pm by autismmommytherapist

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Today’s post should come with a warning- it’s messy, there are no pretty vocabulary words, just truth.

My boy is struggling, and by extension his family is too.

Today, I’m just done.

Zach’s been plagued by insomnia for the better part of four months now, and since sleeplessness with a child is a family affair, his mom and dad have experienced it too. We were on top of it from the start- I enrolled him in a sleep study through the Autism Treatment Network/ Autism Speaks at CHOP (the nurse made house calls, it was fabulous.) We cut off technology after 7:00 PM.

We made his room as dark as he could stand it. We’ve upped melatonin, given warmer baths, used massage, yoga and breathing techniques to relax (all of which have worked to make me sleepy, not him.) In an act of desperation I even tried aromatherapy, which sadly my boy finds disgusting (but hell, at least I like it.)

Truly, we have left no stone unturned (and I know because I’m the one turning them.)

And I’m trying not to go to my dark place (it’s where the awful thing is PERMANENT AND WILL NEVER GO AWAY, anybody else ever visited there in their autism journey?) as it’s obviously counterproductive. Hopefully, it’s not true either. Today, as I hauled my tired middle-aged ass out of bed at an ungodly hour to deal with a tangled blanket I reminded myself that we kicked this demon once this summer, enjoyed a two month respite from seeing our child 24/7.

Today I am really up for a respite repeat.

Short of that I’m going to remind myself that so much that happens with autism is cyclical, that we’ve been through periods of aggression and insomnia and extreme OCD with Justin and have come out the other side. We will with Zachary too.

At least I’m telling myself this, because I’ve already eaten three days worth of chocolate to “wake up,” and the situation’s getting serious. The holidays are approaching after all.

The truth is I just feel so badly for him, because he’s a wreck after these nights, and I know his little body wants and needs the sleep. And since the “sleep spell” I made up for him no longer seems to be working, I’m throwing this out to the universe.

Let this boy sleep. Let his mom and dad sleep too.

And hurry up about it because I’m running out of chocolate.

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June 2, 2014

Sleep Study/Children’s Hospital of Philadelphia (CHOP)

Posted in AMT's Faves, Fun Stuff, Life's Little Moments, My Take on Autism tagged , , , , , , , at 2:09 pm by autismmommytherapist

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Sleep, glorious sleep (or the lack thereof.)

I will share with all of you that for a long time I was in pursuit of this elusive dream, first with my eldest son who is severely autistic, and then with my youngest son, who is on the mild end of the spectrum.  There were many years I never thought any of us would see eight consecutive hours again, until finally both boys through a tenacious adherence to routine (and probably just plain old maturity) did learn to sleep through the night, for which their parents are eternally grateful.

At least, that’s what we thought.

I have to admit I wasn’t entirely certain how many z’s each boy was getting, so when I was approached by Dr. Amanda Bennett at CHOP through the Autism Speaks/Autism Treatment Network about participating in a sleep study, I was thrilled.  It seemed there was a way to find out for sure if all our hard work was really paying off for the boys, and I couldn’t wait to participate.

Our “investigator” is Dr. Margaret Souders, PhD and CRNP, who called me about participating in a study funded by the DOD whose goal was to see if kids with ASD sleep better with a home-based program adjusted to their individual needs.

It sounded like heaven to me.

Dr. Souders told me that studies have shown that up to 66% of autistic individuals have sleep problems, and that those problems are often linked with anxiety and hyperarousal issues.  Apparently we all need a relaxed heart rate to sleep, and people on the spectrum often have a difficult time bringing down their heartrate.  By measuring how much a participant slept the hope was to create a sleep protocol tailored to them, so they (and their tired families) would eventually sleep longer and better.

Forty families are participating in the study along with ours, and the study itself will take approximately eleven weeks to conduct.  Participation involves filling out a medical sleep history, several questionnaires, an interview with Dr. Souders, several home visits, and a daily sleep diary for both kids.  The really cool part was that each child wore an actigraph, or a small watch-sized computer that measured their movements at night for several weeks so that we knew down to the minute how much they were sleeping, and how long it took for them to put themselves back to sleep if they awoke.

If you’re thinking “my child will never wear it,” trust me, that was my first reaction too.  The actigraph was sewn into my one son’s pjs, and into a t-shirt for my other, and neither complained a bit.  According to Dr. Souders 97% of the kids in the study have worn the actigraph without issue.

To my absolute delight we found that Justin, my eldest, was sleeping almost ten hours a night, with infrequent wakings after which he always went back to sleep.

After years of struggle, that knowledge felt like winning the lottery.

I did discover however that my youngest son was having enough trouble falling asleep at night to qualify as having insomnia, so we needed to take action with him.  We have now changed up his routine.  We put him to bed later now, give him a hotter bath and a massage (I know, there is nothing we won’t do for our kids,) and rock him for a while before he attempts slumber.  I got back the results from the actigraph the other day, and our work paid off.  While Zach still isn’t getting as much sleep as Justin the quantity has increased, and he no longer fits the criteria for insomnia.

Victory is sweet.

Dr. Souders’s ultimate goal is to train occupational therapists, nurses, and BCBAs to go into the home to help create individualized sleep protocols, and I am certain with the findings from this study she will be able to realize her dream for families.  She strongly feels that while parents need to do some work to help their kids, that practitioners must meet families more than halfway.

And in this community which is so devoted to its kids, I’m certain she will find many willing participants.

If you’re interested in participating in a sleep study, please contact Dr. Margaret Souders at (215) 898-1935

November 25, 2013

“EEG-land”

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 10:23 am by autismmommytherapist

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His hands reach up forcefully to free his scalp from its gauzy restraints, and for the hundredth time I say “No Justin, it has to stay.” Although my son responds with obvious distress and a few more furtive attempts at freedom, he complies. My mom and I run around trying desperately to distract him, and achieve mecca when the hospital’s child life specialist brings a cache of “light up and spin” toys, his favorites from home being so yesterday. We are in our fourth hour of “EEG captivity,” and the adults in the room are all wondering how we’ll get him to bedtime, much less through the night where most of the important information will occur.

Finally our dinner arrives, and as if by magic my happy boy returns, his desire to pull off his cumbersome headgear quelled. I look at my mom and smile in relief, as since we’ve made the supreme effort to get here by God I want to compile this data. Eventually Justin turns off the television himself and hands me his favorite book, and with astonishment we realize the child who has only spent two nights outside of his own room in the last seven years is actually ready for bed. We quickly comply with his demands, darkening the room as he likes, turning on his sound sleep for white noise and comfort.

I curl up next to him on the bed and rub his back as I sing his night songs, see his breathing even out, watch him as he slips into slumber. My mom and I quickly clean up and organize the space for my husband’s impending shift, and we quietly high-five each other, as not only is Justin unconscious which is imperative for the study, but we’ve managed to capture the episodes that indicate potential seizure activity.

Since epilepsy is often co-morbid with autism his neuro pediatrician thought we should do the test, and although we don’t like to subject Justin to unnecessary procedures, this one seemed important. My shoe catches on his errant sneaker and I almost take a tumble in the dark, and I contort my body to avoid making noise because I will do anything legal to keep this boy asleep.

I sit to avoid further calamity, and wish once again the hospital served wine.

As we wait for my husband to arrive I have a few minutes to reflect on our experience, which despite great difficulty has been a positive one. My son, who generally wants to leave even the most fabulous places in under an hour and loves his bedtime routine perhaps as much as his parents, has made it through the better part of a day with tiny electrodes placed all over his head, held in place by a gauzy substance that is certainly irritating the hell out of him. He has born these indignities with some protest, but each and every time I’ve told him “No,” both in response to removing the offending head gear or his plea to leave as he shoves his shoes in my hands, he has complied with my refusals.

As I sit back in the hospital’s surprisingly comfy recliner I reflect upon how momentous today has been, how I could not have entertained even attempting this procedure even a year ago, how much Justin has matured, and with such grace. I think upon the different trajectory of my sons’ lives, how my youngest with mild autism will most likely follow a more traditional path, perhaps involving a spouse and children, most certainly a stint at college and career.

I muse that I will be proud of his collective accomplishments, the trappings of a “normal life” that will probably be his due. I gaze upon the slowly rising blanket of my slumbering son and feel to the depths of my soul that I am equally proud of this child as well, my son who tolerated the hands of strangers today, the confines of a hospital room, the indignities of electrodes monitoring the mysteries of his brain.

I contemplate the fact that every time I denied him his protest was coupled with a deep gaze into my eyes, a slumping of shoulders that admitted defeat, but an absence of aggression. I ponder how much self-control this action necessitated, how he contained his wrath, how he constantly shatters my expectations of him.

I walk over to adjust an errant swatch of his favorite blanket, feel his moist breath on my fingers, gently lean over to kiss the cloth so as not to disturb him. Tomorrow he will most likely return to his beloved home, this child who despite his severe autism has days dominated by affection, who at ten years of age is attempting to speak to get his needs met.

His accomplishments differ greatly from his sibling’s, but they are equal in stature, merit commensurate praise. I watch as he shifts slightly, perhaps chasing dreams of home, and my heart swells with pride, with love, with gratitude that he has helped us conquer yet one more hurdle in his often challenging life.

Soon my spouse will enter, and the changing of the guard will occur. But for these few moments I simply hold my mother’s hand, revel in the beauty of the boy before us, and let my unfettered pride reign.

May 29, 2013

Mirror Image

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 12:19 pm by autismmommytherapist

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My son lies quietly on his gurney, enmeshed in a cocoon of warmed blankets I’ve tucked around his feet. He’s been here for well over an hour, as the child slated for the MRI before his keeps waking up mid-test, so Justin has been forced to wait. Every five minutes or so he tries to swing his feet off the side to get down, and his father and I say a calm “no”, and he complies.

Finally the nurses come in to sedate him, and he relaxes into our embrace as the staff does their job. Within a minute he is out, and the kind nursing staff at CHOP whisks him off to the exam room as his father and I give each other a thumb’s up.

Waiting not being Justin’s forte, we are actually relieved they’ve taken him.

We’re here at CHOP today to conduct the first in a series of tests for our son, a series which will include very advanced blood work, and perhaps even a spinal tap. Justin’s father and I have traditionally been very conservative when it comes to tests and treatments for Justin, as historically they’ve never lead to much improvement in his symptoms, and I hate to put him through anything unnecessarily.

Our neuroped has never pushed us into anything which is part of the reason we’re even consenting to these ordeals, has in fact been patient as we’ve contemplated their possible efficacy for the better part of the year. When they were first proposed Justin was going through a terrible period of aggression, and frankly all we could concentrate on at that time was finding the right dosage for his medication, anything to alleviate the pinching, pushing and general miserable nature so unlike my firstborn.

My family is in a much better place now, and I am far more able to process the reasons for the tests, and the knowledge their administration might reveal to us. Among many other things, these exams will be looking at mitochondrial dysfunction, possible inflammation, viruses, and neurotransmitter function.

There is a very small chance they will discover something “wrong”. There is an even smaller chance we’ll be able to treat the issue. His father and I are at a point where we’re willing to put him through these exams to find out.

Despite the somewhat invasive nature of these trials (as well as the fact he’s missing a sacred day at school) I’m game, because I hope we can help him. His perseverative tendencies, the OCD-like behaviors in which he often engages but which rarely seem to bother him, have become a torment over the past few months.

The repetition of movement which in the past has actually seemed to calm him has now become his enemy, seemingly robbing him of his generally happy nature. Sometimes, when he can’t bring something to his idea of “order”, he just ceases, and cries.

It’s heartbreaking.

I want it to stop.

My husband and I now have the luxury of a forty-five minute lunch together, so we gather our valuables and make our way downstairs to the hospital’s convenience store. I know that very soon we will make our way back to his room, where he will eventually wake up a little wild, but will self-soothe when he knows his parents are by his side.

I have a feeling he will come through with flying colors, will recover quickly from the effects of anesthesia as he did after his ear tubes were placed, that we will soon be on our way home. He will be calm, at peace.

He will be our good boy.

And for just this moment I allow the anger to wash over me, that we are here in a hospital on this beautiful spring day, that as I’m writing this my son is in repose in a loud cocoon, not at school with his peers. I’m angry for the disruption that autism often causes in his life, and in ours. I’m angry that he sometimes suffers.

I’m angry I can’t make it better.

My husband and I wait mere minutes before he’s wheeled in, still knocked out from the anesthetics, his face beatific in repose. He will sleep another hour at least as his father and I hover at his bedside, and I grab my husband’s hand and squeeze as we give each other our trademark gaze/half-grin.

It’s been ten years since this journey’s started, and some days it feels like a hundred. In truth, even though unfortunately we’re both really tired, we’ve only just begun. We have to harness our reserves to weather what will come- adolescence, adulthood, our eventual demise. There’s so much still left to go.

But in this moment there’s simply the three of us, just as we started on that chilly May morning over a decade past, when the sleeping child before us made us parents. We will do whatever we can for him, in part because he’s ours.

We will also do whatever we can because in truth, he’s just so damn wonderful.

I avert my eyes to my slightly stirring son and place my hand lightly on his chest, feel his strong heart beat in time with my breathing, see his body shift imperceptibly as he struggles to come back to us. He’s a fighter this one, always has been, always will be.

He will return to us soon, craving hugs, juice and snacks, as is his habit. We will slowly dress him, and he will love being escorted out in his fancy wheelchair. He will smile when he realizes he is going home.

And I will smile in response, and remember as I often do just how much I love this special, unique, and amazing child.

December 12, 2012

Autism Treatment Network (ATN) at Children’s Hospital of Philadelphia (CHOP)

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , at 12:31 pm by autismmommytherapist

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At the conclusion of a routine sick visit eight years ago, my son’s pediatrician told me my boy had a severe and lifelong neurological disorder by perfunctorily shoving a batch of miscopied articles into my shaking hands, all of which contained the word “autism” in the titles. He then quickly and summarily left the room.

He wished me an offhanded “good luck” before he departed, leaving me to gather the pieces of my shattered soul along with the detritus that comes with any toddler. This pseudo-diagnosis was delivered to me so thoughtlessly not by any quack, but by a renowned physician in our area, one whose practice was fifteen minutes from the nation’s capital. He was the pediatrician with a waiting list to get in; the one whom everybody loved.

Through my grief and shock, and if I’m honest, my hope now that I knew what Justin’s differences meant, I felt an intense rage at having been informed this way. I vowed someday I’d try to do something about it. Now, it seems, I’ll get to have that chance.

The knowledge that my eldest son’s development wasn’t exactly typical didn’t come as the greatest shock to me back in 2004, as I’d been concerned about some of his behaviors for the previous eleven months. Still, I would have preferred to hear his doctor’s concerns rather than read them with one hand tenuously clutching those damning articles and the other attempting to keep my seventeen-month-old from falling off the examination table. I felt terrified, hollowed out, and numb all at the same time.

The detail that kept me sane was he had written the numbers of several excellent developmental pediatricians on the front page of one of the articles, so at least I wasn’t starting from scratch. Even as I gathered up my boy and his toys I had a partial plan on how to get the official diagnosis, which I knew would lead to the appropriate therapies I had no idea in that moment I’d be mostly conducting solo for the next fifteen months.

The contacts wouldn’t change everything, but they were helpful in that terrible moment. Still, the information was delivered so cruelly, and would lead to so many different referrals both for therapeutic practices and for diagnoses, that the entire experience was exhausting, and completely less than optimal.

When we had finally settled Justin into a routine about a month later I found in my few unfettered moments I would fantasize about a one-stop-shopping experience, one in which my pediatrician would have been able to deliver the diagnosis I had to wait another four months to acquire a state away. I also dreamt of spending my time actually delivering services to my child rather than gracing the waiting rooms of the myriad specialists we were directed to see, all of whom would hopefully ameliorate the co-morbid symptoms that so plagued my son, namely gastrointestinal issues and sleep disorders.

I wished desperately that we’d had a better experience. My heart still broke for the numerous parents whose children would continue to be diagnosed, some in that exact brusque and uncaring manner, many who would have their child’s condition revealed to them in a way that might make my experience look exemplary.

My eldest is almost ten years old now, and it’s been almost a decade since that devastating day, one which continues to haunt me. In the interim I’ve relocated my family to New Jersey for the educational systems and proximity to family, and we’ve had a second child, also diagnosed on the autism spectrum. I never lost hope for the one-stop-shopping experience, so when I heard about the Autism Treatment Network (ATN) at Children’s Hospital of Philadelphia (CHOP) over a year ago, I jumped at the opportunity.

As participants in the program both of my children could be enrolled and have access (if needed) to the services of a nutritionist, a developmental pediatrician, a neurologist and a psychologist all within the same hospital system. Specialists in gastroenterological disorders, metabolic disorders, and sleep disorders are available as well.

We would be asked to make the commitment to schlep to Philadelphia four times in the next three years with each child, but we could pull them from the program at any time. The ATN is primarily funded by Autism Speaks, and has seventeen centers throughout the United States and Canada. Its mission is to provide families of children with autism with state-of-the-art, multi-disciplinary care.

Last week along with several other parents I had the honor of being invited to participate on the first autism-centered Family Partners Program, an initiative dedicated to improving the delivery of services of the ATN to families with children on the spectrum. I was fortunate to spend the evening with Amy Kelly and Amy Kratchman (family advisors for the ATN) who are spearheading the program with the hospital, as well as with two intensely dedicated developmental pediatricians (Amanda Bennett and Susan Levy).

The forum was rounded out by several other parents of children with autism spectrum disorders as well as staff from the hospital and the ATN. While there are many goals the team wishes to accomplish, the main focus of the group is to provide feedback to CHOP and the ATN about programs, initiatives, research, quality and improvement projects that involve families with children on the autism spectrum.

Once the preliminaries (and the food, a definite bonus) were dispensed with, we got down to brass tacks. I’m not certain who first proffered up the idea, but fairly soon into the meeting someone asked the parents these questions:  Would you prefer to have your pediatrician be educated and knowledgeable about your child’s co-morbid conditions?  Would you like them to be able to treat these conditions?  Finally, would you like to see the ATN in better collaboration with pediatric and adult physicians (since children with autism eventually become adults with autism) so that your child could be predominantly treated in-house?

As I reluctantly put down my Caesar salad wrap and looked around the room at moms nodding their heads in emphatic agreement, we all answered with a resounding “yes”.

Frankly, it sounds like paradise to me.

I know that some parents will read this article and be extremely skeptical that any type of collaboration will take place, much less lead to significantly improved delivery of services. The truth is, however, that we have to start somewhere. CHOP has already begun to consider a practice in which to pilot this collaboration, and the ultimate goal is to expand the collaboration to other pediatric practices in the region, with at least one provider in every practice being well-informed and educated about autism.

If you’re wondering why any double-booking appointment physician would be interested in this type of instruction, the ATN at CHOP has worked that piece out too. All pediatricians are required to carry a certain amount of MOC (Maintenance of Certification) credits to maintain their board certification, and this partnership would satisfy some of those requirements.

Given that I’m a “behaviorist” on the side, I was happy to hear that these doctors would not just be intrinsically rewarded. Time is in short supply for all of us. Physicians would not just walk away with an increased knowledge base about their patients- they’d have credits toward retaining their licensure as well.

Throw in a little chocolate, and it would be the perfect experience.

Of course, all of this is a huge undertaking, and its success ultimately resides in multiple practitioners desiring to deliver better services to beleaguered families, which is no small undertaking. I’m aware that educating one physician in every practice in the United States will take some time (perhaps the understatement of the year), but a number of other autism milestones took a great deal of hard work too.

It wasn’t so very long ago that Early Intervention was just a pipe dream, or that offering self-contained classrooms to autistic children who need that confinement was an unheard of practice. I’m certain this process will involve small and laborious steps. I’m also certain the ATN will succeed, and the moment can’t come too soon.

Somewhere out there soon, a baby will be born. In a few years his mom will approach his physician with her concerns, her worries, her fears. She may be told they’re nothing. She may be told to wait.

She may be told she’s right.

And if she is, hopefully she’ll be given the tools to help her child succeed in a compassionate, caring, and informed manner that won’t break her heart.

It all starts with a little hope.

For further information go to http://www.autismspeaks.org

February 21, 2012

Autism Treatment Network (ATN)- CHOP, Philadelphia

Posted in Life's Little Moments, My Take on Autism tagged , , , , , , , , , at 10:39 am by autismmommytherapist

I check my watch for the fifth time, and my timepiece tells me in no uncertain terms that one of my children is indeed entering his second hour of testing without either of his parents present. I have to smile, because this would never have transpired if it was Justin’s appointment. Through this gift of time it appears I may even have mastered the equally daunting tasks of learning how to text AND delete emails on my new smart phone, so the minutes without child have been well-spent.

My husband is just about to go in search of snacks when we hear the double-doors on the far side of the waiting area crash open, and a bundle of energy over three feet high runs the expanse of the room and crashes onto my lap. “Mommy, I’m here!” he announces to the sparsely-filled room, and the three adults surrounding him grin, certain that everyone currently inhabiting CHOP (Children’s Hospital of Philadelphia) is aware that he is indeed in residence.

“He did really well” our kindly psychologist, Dr. Iadarola, informs us, and Jeff and I begin to gather the twelve bags that consist of either boy’s entourage when we take them on doctor’s visits. Zach is soon badgering us for snacks and juice, and we promise him he’ll have access to both when we return to the examination room. We’re about a third of the way through our initial visit at CHOP’s Autism Treatment Network (ATN), a program we found out about from the Autism Speaks website.

We’ve taken him here today in part because he’ll be entering kindergarten in the fall, and we thought he should have a comprehensive examination prior to that hallmark event. We’ve also chosen this program in part because the allure of having him evaluated by a cadre of professionals whose expertise is actually in the diagnosis and treatment of autism spectrum disorders is too great to resist.

As I’ve mentioned before, it doesn’t take much these days to make me happy.

Now that Zach has concluded the “exam portion” of the visit, which included an administration of two tools created to assess his level of involvement on the spectrum and his IQ, it’s time for his parents to be interviewed. He’ll spend over an hour out of the room with the lovely ATN receptionist, who will learn more about dinosaurs than she ever wanted to know in one lifetime.

The document which will be employed by the psychologist is called the Vineland, a diagnostic tool with which I am so familiar I offer jokingly both to ask and answer the questions if it will save us all time. Jeff and I dutifully (and humorously) respond to queries about his development, self-help skills (fabulous except when it comes to chores), and desire for social engagement (no issues there). At the end, the psychologist says this was one of the best “Vineland interviews” she’s ever had.

Gold stars are distributed to both me and Jeff.

At the conclusion of the interview a slightly weary receptionist returns our completely wound-up child to us. After a small interlude, in which our psychologist and nurse practitioner for the day will inform our developmental pediatrician of their findings, the final portion of the appointment commences. During the last hour of our visit Zach will be poked and prodded a bit by the nurse practitioner, an event which he will not take to with great zeal. A magic marker will be thrown to the floor in protest, and after half a dozen firm requests and a bit of “protest-flopping” on the cold tile of the exam room, the offending writing tool will finally be returned to its rightful adult owner.

A dozen different dinosaur pictures will be drawn, the last of which Zach will utilize that errant marker to poke our developmental pediatrician in the face, just to make sure she takes in the entirety of its glory. For this last portion of our day he was, in the words of my late grandma, “quite a pill”, and his parents couldn’t be happier, because that behavior is exactly why we’re here in the first place. We’re pretty certain Zach is exhibiting some symptoms of ADHD on top of his mild autism, and we’re here to see if the professionals view him that way too.

Dr. Amanda Bennett, our developmental pediatrician that afternoon, asks us if this is the type of behavior we sometimes see at home, and we respond in the affirmative. She knows that variations on this theme are sometimes acted out in school because his teacher has filled out a Vanderbilt ADHD Diganostic Teacher Rating Scale  on his behavior, a form which was really helpful to her in preparing for our visit.

We inform her of behavioral strategies employed both at home and in the classroom, techniques I used with my own students that I could recite in my sleep. I tell her that at our fairly recent parent-teacher conference I had shared with his beloved educator that in many respects, any atypical behavior Zach was exhibiting was more reminiscent of a child with ADHD. I had said to her that although the signs of autism still existed, I felt they were far less prominent that his impulsivity. I admit I’d wondered if she would think I was delusional, but thankfully, our opinions on my boy seemed to coincide.

It’s lovely when that happens.

Once Zach is again buoyed down with pretzels and liquids, Dr. Bennett and Dr. Iadarola go on to share their findings with us, as Jeff and I listen raptly. As expected they still find him to be on the spectrum, but admit they were on the fence about it. They shared with us that being privy to his past history of regression, added to his being the sibling of a child with autism, were the two facts that pushed them over that proverbial fence. Our team of professionals goes on to state that they concur with our thoughts that he does indeed have a co-morbid disorder of ADHD (approximately 60% of children with autism have another disorder as well).

They also inform us they feel his parents and his school already have appropriate behavioral strategies in place (yay for us!). Dr. Bennett closes with mentioning studies that suggest that the most effective over-all strategy to address ADHD is to combine behavioral techniques with medication, and mentions there are a myriad of said medications available if we choose to go that route.

While it’s not exactly our dream to medicate our child, it’s so refreshing to know there’s choices available if we one day need them.

Dr. Bennett promises us a list of recommendations once their computer program allows her entry again, and the next day we’ll find her good to her word. Our visit is concluded, and I realize we’ve been within the confines of CHOP for almost five consecutive hours. None of us (particularly me) has cried, and every member of the team has appeared exceedingly knowledgeable, and treated us with courtesy, and respect.

After a few horrific encounters with “professionals” over the years, I insist on the latter.

All in all, Jeff and I were very pleased with our experience at the ATN at CHOP, and will definitely have Zachary continue with the program. Of course most of the reason our expectations were met was due to the particular professionals who were on duty that day, so I can’t promise every encounter would go as smoothly, or be as helpful as this afternoon was to us. If any parents out there are looking for kind and compassionate professionals to conduct a thorough evaluation of a child they suspect may be on the autism spectrum, or are just looking for a change of practitioners, I couldn’t recommend this route more highly.

And to all our wonderful practitioners, a grateful parent once again says thanks.

February 3, 2012

Gratitude Attitude

Posted in Uncategorized tagged , , , , , , , at 10:28 am by autismmommytherapist

This week’s Gratitude Attitude goes out to the Autism Treatment Network at CHOP, the Children’s Hospital of Philadelphia.  Our “treatment team” for Zachary, which consisted of Dr. Amanda Bennett, developmental pediatrician; Dr. Iadarola, psychologist; and our nurse practitioner, Megan Ott, could not have been more knowledgeable nor more compassionate.  I discovered the existence of the ATN centers through the Autism Speaks website, and I am so that glad I did.  It is wonderful to spend five hours with professionals who not only “get” our situation, but send us off with very practical recommendations that same day.  Thanks again, I will be writing about the entire experience soon!

January 9, 2012

Reprieve

Posted in My Take on Autism tagged , , , , , , , , , , , , , at 10:32 am by autismmommytherapist

SLAM!!!  I turn in time to see my eldest boy conclude what I know was the long arc of his hand originating behind his head, and ending with contact on what I fervently hope is not a now-broken DVD player. I rush to the living room to tell him not to slam things, which usually is enough to break him from his reverie and redirect him. This time however he just looks at me, with a remoteness in his eyes and an expression I can only describe as “devoid of Justin”. He attempts to do it again. I grab his arm and pull him to me for a hug, and I literally feel the tenseness in his body dissipate, and the essence of my boy return. He graces me with one of his heart-stopping smiles and returns to the DVD player, the episode seemingly forgotten. I return to my dishes in the kitchen, but I know it won’t be long before I hear that ill-begotten slap, and will abandon my scrubbing once again.

I just want this to stop.

Justin’s autism symptoms (or perhaps more accurately, his OCD symptoms), seem to ramp up considerably after either an antibiotic, or an illness, or both. He battled a fairly mild ear infection just a month ago, one which eventually required his usual dose of amoxicillin, and left him healed. It also left him with what I refer to as “extras”, including an increased need for order in his life, frequent head-shaking, and a new manifestation, the slam-dunk of a hand on any object in close proximity to my boy. These behaviors usually come and go in cycles, fortunately  with many long and peaceful interludes in-between. This time unfortunately his returning health has also brought back the long-forgotten urge to pinch, as well as awkward body movements, and I know it’s time once again to explore why this is occurring.

And trust me, we’ve been here many times before.

Jeff and I decided to take him to the ATN at Philadelphia CHOP (Autism Treatment Network though Autism Speaks), in part because he hadn’t had a full evaluation done in a few years, and in part because I felt they’d be the best practitioners to help us decide which specialist to approach next. For anyone considering using any of the ATNs in their area I’ll share that I thought it was a very comprehensive evaluation, with the best part by far being our experience with the developmental pediatrician.

Any time a clinician associated with autism examines my son, offers me excellent advice, and exudes any amount of warmth whatsoever, I am hooked.

After my husband took my exhausted son out to the car so I could conduct the rest of our family history in peace (after seven years dealing with autism, it’s become rather lengthy), I felt like I could really concentrate on what she was saying. She told me straight out after observing him that his new movements could be indicative of a seizure disorder, and although the chances were rare, we’d need to investigate further. We discussed the fact that he might just be reacting to the Risperdal, the medication we put him on a year-and-a-half ago to help eradicate the last of his aggressive behaviors. Dr. B also said that all of these aberrant incidences, the return of the pinching, the head-swinging, and the unpredictable slams, could simply be a new manifestation of his autism.

We’ve been there before too.

Our knowledgeable developmental pediatrician informed me that a pediatric neurologist would be our next stop, and visits would probably include at the very least an MRI and an EEG, none of which have been conducted on my boy before. She must have seen me grimace because she offered me a heartfelt “I know, both are going to be extremely difficult for him”, an offering of empathy that made me want to hug her.

I restrained myself.

I also took away from our conversation that I needed a very specific type of neuro ped, one well-versed in seizure disorders, movement disorders, and tics. Dr. B gave me a list of names (all of whom would decline taking Justin on, but at least I left the office with a plan). Through my husband’s supernatural research skills (literally, the man can find ANYTHING) we’ve since come up with a practitioner who seems to fit the bill, one who even had a cancellation for ten days after our initial call.

I’m sure many of you will agree that’s better than hitting the lottery.

Within a week’s time we’ll be gracing the doors of this new practice, and unless it’s an absolutely horrible experience, I’m sure we’ll return for any number of fun tests and consults too. They will be difficult to watch. They will be much tougher, for a myriad of reasons, for Justin to endure. But endure he will, because he is such a good boy, and we’ll get through all of it and hopefully come away with some answers.

I recall, as I closed up my purse and gathered a half-dozen toys scattered around the tiny CHOP exam room to make my return to our car, that the feeling accompanying my relief for having a plan was rage. Rage that perhaps something invisible to the naked eye incites these symptoms in my son. Rage that at times he’ll stop in the middle of an episode, his face will crumple, and he’ll sob his heart out for no reason. Rage that he and our family have come so far, and still have to endure these periodic regressions.

Rage that my boy still suffers.

And yet, infused with the rage remains that thin filament of hope, the thread that has been with me since the beginning, and stubbornly refuses to be broken. The research has come so far in the past few years, physicians are so much better informed, that perhaps for Justin, we will discover some relief.

And along with a lot of baggage, I unwind that thread with me as I head back to my car, and him.