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

Disney and Halloween 2013 184

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.

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

medical symbol

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

May 20, 2012

Educator Appreciation

Posted in Life's Little Moments, My Take on Autism tagged , , , , at 8:13 pm by autismmommytherapist

It’s 8:30 on a bright, clear May morning, and I’m grateful we’ve finally had a turn in the weather as I trudge on up to the garage that babysat my car overnight. Zach’s IEP meeting is in an hour, and I know I’ll have enough time to claim my vehicle and make it to his pre-school, but I keep my pace at a good clip just to be certain. It’s only Thursday, but it’s been a long week. Three doctors visits with my youngest child, an unidentifiable illness that thankfully did not turn out to be the “scary alternative”, a nail in my tire driving home from said appointment, and an unscheduled “second spring break” with Zach have all frankly worn me out. I pick up my stride just a bit to get my adrenaline going, because this morning’s meeting is the big kahuna, and I need to be on top of my game.

Today, with my son’s child study team, is the day we talk kindergarten.

I’ve requested all his testing material ten days in advance which is within my rights, and frankly I’m going to be very curious to see what the excellent practitioners who comprise my son’s educational world suggest for next year. He’s made staggering progress since he started there a little over two years ago, back when he was a young lad not even three years of age with a somewhat limited vocabulary, and an absolute obsession with Thomas the Train. Half a presidential term later he gives eloquent speeches on the merits of carnivorous dinosaurs versus the herbivorous species, tells everyone who will listen he wants to be a paleontologist, a firefighter, and a dad, and is fascinated by (but not limited to), the entire Transformer family.

Thomas, of course, is so yesterday.

Given the leaps and bounds he’s made I’m wondering which program they’ll suggest he attend, all of which I’ve seen, and all of which have their merits. Kindergarten is still a half day endeavor in this town, and I feel fortunate that if he can handle it he has the option of participating for two-and-a-half hours daily, which I feel will be exactly the right amount of time for him next year. There are also two other choices for after- mainstreaming, both of which involve a self-contained classroom where he could continue to work on his social skills and his often impulsive behavior, the latter of which his parents, teachers, and pediatricians feel is now his biggest stumbling block to full inclusion.

We’ve recently had Zach evaluated at CHOP, and while he still retains that mild autism diagnosis, the entire team at Children’s Hospital felt that he merited an ADHD diagnosis as well, and that the latter diagnosis now more accurately represented him than the former. As an educator I have to admit I was elated, because there are so many strategies to help lesson some of the more severe symptoms of ADHD (many of which I used in my career), and quite honestly, there are a vast array of medications to help as well. Autism doesn’t have as many medicinal options, as we rediscovered this past spring when Justin became ill, and the drug he was taking seemed to completely stop working.

I’m a girl who likes having choices. I’m happy there will be so many for Zach.

I finally make it to the garage and claim my car, and scoot over to my son’s pre-school which is mere minutes away. As I navigate the side roads of Jersey I admit I’m also curious as to which “label” Zach will receive for next year, i.e. one with autism in it, or one such as “otherwise health impaired”, which is doled out for children who have everything from hearing impairment to ADHD. I don’t care which one he’ll receive, as long as it garners him every service and the type of program he requires to succeed. I’ve learned long ago that labels aren’t the important issue, no matter how formidable they may sound. Services, and the educators who provide them, are the key.

And to date I’m so happy and grateful to say, from Early Intervention to pre-school, this child has had the best.

I make it to the meeting with a good ten minutes to spare, and am soon welcomed warmly into the conference room. There are no introductions necessary as I know all of these educators well, and we promptly get down to business. According to his dual diagnoses he still qualifies for special education services, and becomes the beneficiary of the “otherwise health impaired” monacre, which the team agrees now fits him best. As we move on to his test results I am momentarily distracted by the image of my son four years ago after his regression, where within a matter of weeks he lost his almost all of his words, his strong desire for social interaction, and the innate curiosity that dominated his soul. He’s come so very far from those dark days.

And so much of his transformation is due to the people sitting in this room.

After a lengthy interpretation of the many tests required to secure him a recurring spot in special ed, we discuss which program will best suit my son. A four- hour program is suggested, one which offers him both the challenge of mainstreaming for the first time without the safety net of an aide, as well as a small-class setting in which to work on more of his individual goals. I’ve discussed this possibility with his wonderful case manager before, but I admit I’m holding my breath a bit as I ask for him to begin in the mainstream classroom from day one, as a fully included student. No special accommodations will be made for him, other than that the special education teacher who works in tandem with the regular education teacher will devote some of her energies, and time, to him.

I admit I’m both nervous as to what the team will say, as well as concerned about the prospect of him moving from a class of twelve with a 4:1 teacher/student ratio, to a class of twenty with a ratio of 10:1. I don’t want my son to flounder. I want him to fly. The speech teacher looks at me and says something close to, “Of course, let’s try it and let him rise to the occasion. After all, our goal is full mainstreaming by first grade.”  I turn toward Zach’s pre-school teacher who’s nurtured and instructed him for two years, and I don’t see her batting an eye. Of course, we won’t know how he’ll handle things until he actually gets in there this fall. Frankly, a lot can happen in four months, for the good and the bad.

But that full inclusion carrot is dangling in mid-air, and I admit, I’m greedy for it.

We quickly conclude the rest of our business together, with brief discussions on how Justin is doing, as well as inquiries made about new additions to certain child study team’s families. An hour plus later we conclude our meeting, one which has been conducted both cordially, and professionally. It was so apparent when every team member spoke of my son how much they respected, enjoyed, and liked my child. I think of how many unhappy parents I encounter or read about on a weekly basis, and once again I am so grateful for what my child has received, the care and cunning that went into creating his educational program for the past two years.

I head out to my car, and this thought creeps into my very tired brain. I hope the future entails that carrot for Zach, because it gives him choices in life, and because he wants the things that full inclusion entails. I think about how proud I’ll be of him regardless of whether our carefully crafted plan works, because he is simply an amazing kid, and always tries so hard. I think about how I’m equally proud of our older child who will never be a part of that world, who is best served at a private school for autism, and I am guessing will always be best served by that brand of education. I remember that we are just concluding teacher appreciation week, and for a moment I am overcome by emotion, by the bounty that exceptional educators have brought to both of my sons’ lives.

And as I have done many, many times over the last eight years that we’ve been on this autism journey, I thank the universe once again for the glory of a good teacher.

`

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!