March 20, 2017
My husband Jeff and I have two sons, an almost fourteen-year-old and a ten-year-old, both with autism. My eldest is on the more severe end of the spectrum, and also has a diagnosis of OCD. My youngest is on the milder end, and has a secondary diagnosis of ADHD. For the most part, they are both happy, successful in school, and the two most loving children any parent could ask to raise. At this point you may be rolling your eyes, or maybe you want to know our secret. Friend, I’m going to tell you. Ready for it?
It’s simply this- get them out.
If you’re reading this with an autistic toddler clinging to your leg because you have the audacity to want to put him in the car for a ride to the park, you may not feel really receptive to this advice. I know, and I get it- I was you twelve years ago. The first year Justin screamed any time we put him in the car (turns out he hates facing backwards, at least that issue was solved on his first birthday,) so outings were fraught with trauma before we even went anywhere. The only time he didn’t cry when we left the house was when I put him in his stroller and took him for a walk, which in Virginia meant several months in summer or winter where that was impossible. I remember thinking at one point that a person who weighed less than my left thigh was keeping me prisoner in my own home.
Yup, the left one’s bigger than the right. Must be a running thing.
After a period of time where I truly felt I’d entered a witness protection program I decided our strict quarantine had to go, and we began our ventures out. I chose our local mall as our battle ground because we could ostensibly go there year round, and at the very least I could attempt to get a drink at Starbucks.
I have my priorities.
At first Justin hated every aspect of our “stimulate the economy” excursions. Knowing this, I started small. The first time we went I just drove him to the parking lot, parked, then went home. The next time we made it to the stroller, and to the closest mall entrance. The next time, we made it inside for one grand loop of the first floor.
Eventually we even conquered elevators. It was a momentous day.
The mall taught me a lesson I applied to many more situations with Justin, and eventually with my younger son Zach when he was diagnosed. Something in me knew that the more times I got out with them when they were younger, the more they’d get used to trying new things. The first time Justin sat on a horse he whined and protested the entire fifteen minutes around the ring. Something inside me told me to pursue this, and while the first month of lessons were hell, nine years later his half hour on a horse is his favorite thing of the week.
It’s one of my favorite times too. It feels like victory.
Of course, exposing my boys to different opportunities is far from the only reason they’re mostly happy in their environments, and usually open to trying new things. Both boys have had years of special education instruction, occupational therapy, physical therapy, and speech therapy. My eldest has had a private ABA tutor since he left Early Intervention. My youngest is on the “autism diet,” which we think helped him immeasurably. My husband and I have tried our best (and not always succeeded) to be patient with them, and we’ve had help from family and friends.
It takes several villages to raise two autistic children.
There have been many factors that contributed to who they are today, but I truly feel that getting them out young ans conditioning them to the community is one of the biggest reasons they’re mostly at peace with themselves and the world at large. It wasn’t always easy. I have tiny scars on my shoulders where Justin’s teeth expressed their displeasure at having to wait on line at the boardwalk. I distinctly remember packing a young Zach up one morning five minutes after we’d made it to the beach because a fly landed on his foot, and he became hysterical.
All good times.
But we perservered, and now my sons have many more options on their life menus. It’s still difficult to keep my son at a relative’s house for more than two hours- we often end a visit with my boy unceremoniously dumping my purse on my lap so I’ll take him home. He has severe autism, so sometimes there are limits to what we can do. I’ll admit I held my breath when we took him to Disney four years ago, but darned if the kid didn’t make it almost eight hours each day in the park.
Given how expensive those ticktes are, I can honestly say those days really were magical.
Whether your kid has just gotten a diagnosis or you’re a few years in, don’t give up on getting him or her out in the world. Ask for help anywhere you think you can get it. If a random neighbor offers assistance, have her accompany you somewhere so you have an extra pair of hands. Even if the outing is a disaster wait a while and try again- I can’t tell you how many times I attempted a trip with Justin that at first made me long for a glass of wine but eventually ended in triumph. Make sure you have a plan B and C for every time you venture out, and if necessary, try your trip in segments so that your child becomes accustomed to where you’re going.
Don’t give up.
Just get out.
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October 27, 2014
Given that my youngest son (who has high-functioning autism) literally has more energy than any human being on earth, I am always in search of outlets for that energy. As luck would have it Zach’s case manager happened to mention Paul Prendergast Karate to me two years ago, and I decided to give them a call.
I explained Zach’s dual diagnosis of ADHD/autism and launched into a litany of his strengths and weaknesses, a monologue which I’m certain lasted for at least ten minutes. At the end I finally took a breath, remembered the concept that a conversation is generally two-sided, and waited.
The words “bring him in we can’t wait to meet him” were music to my ears.
I decided to interview Master Paul recently because I like to promote people and businesses whom I deem “autism-friendly” whenever possible. Master Paul shared with me that he was a self-described “lazy kid” who took to karate with gusto after his first lesson, an enthusiasm he summoned later in life when he acknowledged the hospitality business was not for him. He realized he truly wanted to work with kids, help them to be their best selves, and facilitate their realizing their dreams.
And out of that desire, Paul Prendergast Karate was born.
During the course of the interview Master Paul told me that he had been a “terrible student who probably has undiagnosed ADD,” a situation he felt was never handled well by his teachers. He recalled an incident in which a teacher called him “retarded” for not understanding a biology concept, and remembers the sting of it to this day.
But instead of letting this episode destroy him, in typical PPK fashion he has instead allowed it to shape how he wants his special needs students to be treated.
And that philosophy translates to making certain he and all his instructors treat those with special needs (and those without) with compassion and respect, and has engendered a neverending quest to solicit their best from them.
The key to the success of this philosophy is of course communication, both between staff members and between staff and family. Families are encouraged to share victories with the instructors so the students can be recognized in class; they are also encouraged to share any difficulties transpiring in their lives so staff can be sensitive to their needs.
There are weekly staff meetings to discuss students’ progress, where Master Paul encourages his instructors to “know their students; if they’re not getting it, figure out why.” Feeling that every child is an individual means the instruction is tailored to the students’ needs. Master Paul shared with me that he likes to be “proactive and not have to put out fires”- he encourages his staff to find the successes in each session, then use praise and reward to help children achieve their goals. His catch phrase is “behavior recognized and rewarded is often repeated.”
Amen to that.
I personally feel that karate has aided Zach immensely, from helping him focus to emphasizing the importance of respect (plus it tires him out, which I especially love.) Although it hasn’t helped him learn to clean his room (they’ll work on that with you if you want) I’ve come to see a more confident child emerge over the last two years, and I credit PPK with contributing to this growth. I don’t know how long Zach will wish to pursue karate, but at the moment he’s happy, his mom is thrilled, and my kid gets to feel good about what he’s doing several times per week.
In the end, there’s not much more you can ask for from an after-school activity.
Brick location: (732) 477-8451
Toms River location: (732) 255-0563
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April 1, 2013
A few months ago a study from the University of Connecticut came out stating that some children who are accurately diagnosed with autism in their early years can grow out of it. The study, spearheaded by Deborah Fein and published in the Journal of Child Psychology and Psychiatry, looked at thirty-four adults between the ages of eight and twenty-one. All were diagnosed with autism spectrum disorder before the age of five, and all no longer showed any remaining signs of the disorder. In fact, the study showed no difference in their performance on standard tests when compared with a control group who had never been diagnosed with autism.
Just to keep this in perspective, current statistics show that only one in twenty children given the autistic label in early childhood will outgrow the symptoms.
When I read studies like this I am immediately brought back to my early days with Justin, who was diagnosed in 2004 at seventeen months, before Jenny McCarthy and autism were household words. Back then having a child diagnosed before the age of two was a rarity, and I recall that I held onto this fact tenaciously in those first few months. I enveloped myself in the comfort that at eighteen months of age Justin was in a thirty to thirty-five hour a week ABA program (mostly conducted by his mother), in some cases a year or more before most children were enrolled. His instruction was my solace in a time of chaos.
Quite frankly, I’ll admit that in that first year of therapy I was desperate. At that point I’d had exactly one interaction with a severely autistic person, the sibling of one of my former students. She was a pre-teen by the time I met her, very challenging behaviorally, and often quite unhappy. I remembered how extremely tired her parents looked, and how her younger sister, my charge, seemed wise beyond her years.
That experience stuck with me over the years, permeated my thoughts about what the future held for my firstborn. What terrified me for Justin was not that he had a label, or was different than most of us. Some of my favorite students were quite “different” from the mainstream, some with Downs Syndrome, some with severe ADHD, some just marching to the beat of a different drummer. Most of the time they were happy; in fact, I often felt they were happier with themselves than most of us truly are.
What horrified me about Justin’s diagnosis and the apparent severity of the disorder’s presentation in him was that most of the time he was unhappy too. Not cranky. Not irritable. No, my boy was predominantly, seemingly irrevocably miserable (and with his constant lack of sleep, reflux, and diarrhea, who wouldn’t be). In those first tenuous months of instruction all I thought about was “curing” him, rendering him indistinguishable from his peers. Sure, I wanted to hear his elusive laughter more frequently too, but mostly I wanted to strip his autism from his soul, render him more “typical”.
I wanted him to be like me.
My feelings have changed dramatically since those dark days almost nine years ago, but I stand by how I felt then, feel a tenderness toward that first-time, terrified, mother. My baby was undeniably suffering. I would have done anything to make it stop.
And now, thank God, I can truly say he isn’t suffering any more.
Justin’s life trajectory will not follow a traditional path, or at least the road my family has generally traveled, one which includes higher education, a life partner, friends. I’ve accepted this, and also accepted that part of me will always mourn that he won’t have the trappings of an existence that have so enhanced mine. What’s come in the wake of this acceptance is the dawning realization that my son adores his life, his routines, the few sacred persons whom he loves, and by whom he is loved in return. He is, most of the time, perfectly happy.
At this point, it’s just me who sometimes struggles.
He will not “recover”. There will be no magic pill for him, no concoction which makes him speak, no sloughing off of the characteristics that comprise his particular type of autism. I will forever chase off my fears of his future life without his parents, what will unfold for him when we are no longer here to protect him, respect him, love him for who he is. I’ve accepted this part of his path too, that I will worry until my last sentient thought dissolves into nothingness, and I am no longer of this world.
Yet he will still be here. And so I continue to work toward a world for him which includes a job that enables him to contribute to society, and a cadre of people who recognize his inherent worth. I continue to reach toward a world which extends past accepting his differences to celebrating them. I continue to hope that his world, whether I’m here or not, will remain filled with love.
Somewhere out there a child will be diagnosed today. A mother or father will be bombarded with information, avenues of therapy, promises of cures. It will all appear overwhelming, impossible, fraught with misery. There will seem to be only one solution to eradicate the sadness, one path to offer a child a fulfilling and meaningful life. There is more than one. There are many.
And to anyone embarking on this journey today, I hope my son’s story will help you to a place of peace.
February 21, 2012
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.
October 27, 2011
My son takes my hand, clenching and unclenching it tightly as he usually does when he’s excited. We walk together through an exquisitely constructed archway of flowers adorning an equally lovely path, and a witch runs right in front of us, followed closely by a goblin in hot pursuit. They are gone in a flash, and my boy doesn’t even flinch, because he’s dealt with these supernatural beings before, and knows these particular spirits of the netherworld are harmless. The path finally ends, and before us looms a large field sporting a haunted hayride, pumpkins for painting, an inflatable fire truck slide, and hot dogs and popcorn for all.
My boy takes it all in and grins, because he knows it’s that time of year again. It’s the annual SEPTA (Brick Special Education PTA’s) Halloweenfest, and everybody is in for a good time.
This year, my son Justin, an eight-year-old boy with moderate autism, is delighted by the sights and sounds around him, far more eager to participate than he has been in the past. We’ve been coming to this event for years, and there have been times when we haven’t even made it through the first line while he waited for his turn in the bouncy house. I’ve also learned to get there early, and this year we only endure a slight wait for each piece of equipment, Justin standing calmly at my side as he now knows the drill.
In rapid succession he masters the fire truck and a maze I’m not certain his mother could have conquered, and congenially walks with me to the center of all the action. Pumpkin painting is not to his liking, but popcorn does the trick instead. He stands by my side patiently as his social mom actually carries off three consecutive conversations without having to chase him, and as I glance down at my sweet boy quietly munching kernels with gusto, I feel a wave of gratitude sweep over me.
All in all, we stay over forty minutes, compared to our not-quite-ten of last year. It is a banner day for us both.
I’ve been attending meetings and supporting the Brick SEPTA for the last four years, and as such I’ve been privy to watching the organization grow and evolve. SEPTA was originally formed in 2004 to address the often unique needs of the special education population. It is comprised of parents, teachers, and members of the community who have come together to provide a forum of support for the children of this school district, and for each other as well. It meets nine times a year, and has created an atmosphere of true collaboration which has led to some fabulous events for children (see below). It has also provided a number of inspiring speakers, all of whom have dispensed incredibly valuable information to our group.
Plus, they always have donuts. It’s a big selling point for me.
This year in particular, president Mary Tara Wurmser, as well as officers Dina Crepaldi, Vinnie Muti, Janet Bixenman, Nicole Barresi, and Sherry Doyle, have combined forces once again to organize some creative fundraisers, wonderful events, and interesting speakers. Two of my favorites (I can’t pick, I love hamburgers and bargains in equal measure) will be held in the near future in Brick at Cheeburger Cheeburger on October 27th, and Five Below from October 27-31.
They are also working with the BMAC (Brick Municipal Alliance Committee) on a holiday event in December that’s a favorite for our kids (and involves a certain “jolly someone”), and a family bowling night solely through SEPTA as well. They will be highlighting speakers on such pertinent topics as transitioning to adult life and learning differently with ADHD, and offering a technology and social skills night as well (due to my technological illiteracy, the former subject will be of great interest to me).
In other words, if you join Brick SEPTA, at least once a month you can be guaranteed an opportunity to learn something, speak with other adults without interruption(!), and have the chance to consume a carb. It’s a win-win for all.
You can check on the Brick SEPTA website for all future events and meetings, with the next gathering taking place on Monday, November 14th, at the Educational Enrichment Center at 7:00 PM. Please know that all are welcome to attend, and I can guarantee the word welcome.
Just make sure you save room for that donut.