March 23, 2013
Kick the Autism Bucket List
As I approach fifty (more rapidly every day it seems), my mind has naturally begun to ponder what I’d like to see accomplished in the world of autism during the last half(?) of my existence as I shoot for that three-digit lifespan. I have personal goals of course (learn how to use my phone, drop those last baby pounds from 2007), but quite honestly I have my own “autism wish list” as well.
Some of these stem from personal experience, some are garnered from the news, and some, to me, just seem to make perfect sense. In honor of autism awareness month, which is coming in April, I’d like to share a few points from my autism bucket list with you, and invite you to respond with yours as well. As Ms. Clinton said it takes a village (or in our community’s case, a galaxy), and I’d love to know what changes you’d like to see in the autism landscape to come.
1) First, since Virginia didn’t recognize Justin’s autism diagnosis back in the day (which forced me to be his primary therapist thirty hours a week for almost a year-and-a-half), I’d love to see legislation in Virginia which requires that adequate Early Intervention therapies be offered to children under three who are diagnosed with autism.
2) Help introduce legislation requiring every state to require teachers to take an autism certification program prior to teaching children with autism so they are familiar with this population. Duh.
3) Have a viable, appropriate employment opportunity for every differently-abled adult out there who wants one. Amen.
4) Have a viable, appropriate residential opportunity for every differently-abled adult out there who wants one. Double amen.
5) Have Tina Fey and Amy Poehler star in my autism play (okay, this is the fantasy wish, but a girl can dream).
6) See the Autism Speaks Autism Treatment Network sites become the go-to place for autism diagnosis and treatment in our country and Canada.
7) Get my books published and donate fabulous amount of money to Autism Speaks and Parents of Autistic Children (again, a girl can dream BIG).
8) Have Fairfax County Virginia schools adopt my anti-bullying program (and have the opportunity to travel down there to help implement it!).
9) See my beautiful eldest boy reside in a place he loves, and have access to riding those horses he adores.
10) Watch as Zachary is sworn in as President (or becomes a fireman, his newest passion, either way we’re good).
Thanks in advance for your contributions!
December 12, 2012
Autism Treatment Network (ATN) at Children’s Hospital of Philadelphia (CHOP)
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
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.
January 9, 2012
Reprieve
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.
