A doctor for special babies
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A doctor for special babies – Helping kids come into their own
BY PETRE WILLIAMS-RAYNOR Career & Education editor williamsp@jamaicaobserver.com
Sunday, April 17, 2011
THEY’RE the ones on whom parents rely for the medical care of their children with special needs.
They are developmental paediatricians, the professionals who help children realise their best selves — despite mental and/or physical challenges — and guide their parents, helping them to understand, among other things, what they need to do to boost learning outcomes.
Career & Education talks this week to Dr Sharon Smile for insight into the occupation. Smile has been a physician since 1997 and a practicing developmental paediatrician since 2004.
She currently works with the parent-support group Jamaica Autism Support Association to promote autism awareness, having only recently returned from Canada.
Smile did her medical degree at the University of the West Indies, before doing her initial training at Cornwall Regional Hospital (CRH) in St James.
“At the time the environment (at CRH) was very family-centered and all persons involved in patient care made it their priority. There was great cameraderie and it was a great environment for learning,” she related.
Smile pursued her subspecialty training in paediatrics at the University Hospital of the West Indies, where, according to her, she “met some great tutors in the form of — just to name a few — Professor Gray, Dr Millard and Dr Antoine”.
“They all embodied the true spirit of a paediatrician,” said the woman who did her post-training at the University Hospital of the West Indies before completing a fellowship in developmental paediatrics at the University of Toronto in Canada.
“The developmental paediatric fellowship programme is spearheaded through the Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada. I worked with an amazing team of professionals there and the Autism Research Unit. We also benefit from rotating through the Hospital for Sick Children for the first year of our training programme,” Smile noted.
Who is a developmental paediatrician?
A developmental paediatrician is a physician who treats and manages children with a wide range of developmental concerns and conditions. Some of the more common developmental disorders are autism spectrum disorder, cerebral palsy and developmental disability (mental retardation). We also evaluate and manage children with behavioural disorders, such as anxiety disorder, aggression and attention deficit hyperactive disorder (ADHD). Proactively, we monitor the developmental trajectory of children who are at high risk for developmental delay secondary to biological, environmental and/or social factors, for example, premature infants, genetic syndromes and children who are abused.
What is the value of the work that you do?
Developmental paediatricians strive to ensure that all children are given the opportunity to overcome developmental challenges and lead productive lives. We work alongside other health care professionals, researchers, communities, churches, educators, and non-profit organisations to promote an understanding of typical development, atypical development and factors which influence a child’s development, such as environmental factors, for example, violence, parenting factors, education, and a lack thereof. We try always to promote optimal development through advocating positive parenting, a healthy home and school environment, healthy diet and spending time with your child, having fun through play. We aim, through research, to identify aetiolgical (causal) agents for these debilitating developmental disorders. Another significant role or value of being a developmental paediatrician is to offer support to parents of children with developmental disorders.
What prompted your entry into the field?
As it pertains to medicine, I have always had a preference for treating children. It stems from their innocence and truthfulness. Subspecialising in developmental paediatrics was easy. Interestingly, children with developmental disabilities have a level of innocence and a strong desire to overcome the hardest obstacle presented to them. Most times they are misunderstood and cannot advocate for themselves and even their parents find it difficult to advocate for them. Thus, I wanted to be that advocate and ‘a voice’ for kids who are vulnerable and unable to self-advocate.
What is it that you most enjoy about the work that you do?
The kids. They say and do the most incredible, unexpected and mind-blowing things. To see how resilient, persistent, appreciative and energetic these children are in the face of significant challenges is amazing. It encourages you to keep trying and to be optimistic.
What are the challenges you face on the job?
The greatest challenge is getting appropriate interventions for children with developmental challenges. Cost is a prohibitive factor. It is heart-rending to know that if only ‘this family’ could afford or had access to a particular intervention then ‘the child’ would be able to change their developmental trajectory to one in which they become functional in their respective environments. The lack of awareness about disabilities and how others view and value a child or person with a disability is also a limiting factor to progress.
What are the educational requirements for entry into the field?
To become a developmental paediatrician you have to first be a medical doctor who has completed sub-specialty training in paediatrics. Then, you complete a two-year fellowship programme in developmental paediatrics in an international medical programme as this subspecialty training is not offered locally.
What other skills and/or competencies are required for the field?
The most important competencies required are an open mind and perseverance. It is also important that you enjoy what you do and that you are passionate about what you do.
As a developmental paediatrician, what sort of employment options are open to you?
Locally, recognition of this field is still in its infancy. As with all subspecialties, options in working in the public as well as private sector are available.
Why would you advise someone to get into this line of work?
It is a very rewarding field. You have the opportunity to be the voice for one of the most vulnerable groups in our community — our children. You are able to make a difference and have a positive effect on a child’s life. If that is not amazing, I don’t know what is.
NOTE: In certain parts of the United States, an average developmental paediatrician’s salary is US$125,000 annually. Smile, for her part, is committed to serving the local public health system to afford access to a wide cross section of Jamaicans, poor and wealthy alike
Teen makes special needs kids a priority
BY LUKE DOUGLAS Career & Education senior reporter editorial@jamaicaobserver.com
Sunday, August 07, 2011
WHILE most teens are focused on the latest fashion fad or out having fun with friends, 16-year-old Arielle Berry spends much of her time helping children with learning disabilities and raising funds to assist with their development.
For the past two summers, Berry has spearheaded projects that have raised more than $100,000 for the Jamaica Autism Support Association (JASA), which is dedicated to helping people affected by autism spectrum disorder.
Supported by her family and friends, her activities are helping to raise awareness about this complex neurological condition that affects one in every 150 children.
“Last year, I decided to work with Aunty Lisa because I was interested in occupational therapy (and) I always liked working with children,” said Berry, who will be a high school senior when she returns next month to Choate Rosemary Hall, her boarding in school in Wallingford, Connecticut, in the United States.
‘Aunty Lisa’ is occupational therapist and family friend Lisa Stoddart Millingen, who operates Therapy Plus near Liguanea in St Andrew, which provides services for children with disabilities, especially autism.
Working with the children made the pleasant teen realise how much attention and therapy they need, and has sparked her interest in a career working with the special needs community.
“I am definitely interested in working with kids in autism. I have learnt how much attention they need, the different care each child needs, and also how intelligent and bright they are. I don’t know how in-depth I will go, but right now I am definitely interested,” Berry told Career & Education.
And so this summer — like last summer — she volunteered her weekday mornings for three weeks, providing hands-on attention to children ranging from about three to 12 years old.
In an effort to generate money towards JASA, Berry, through her family, last year received a donation of a BlackBerry smartphone and had it raffled at $200 per ticket. The effort realised an impressive $55,000.
The innovative teen continued her fund-raising efforts this year, acquiring bright green wristbands imprinted with the words “Action for Autism”. Another $50,000 was raised.
The wristbands were placed in retail stores and pharmacies and were also sold by persons in the autism community.
“It spreads the message further than just raffling a BlackBerry,” Berry said of this year’s effort.
Co-founder of JASA Kathy Chang is particularly proud of the teen for her work. She said such a successful individual fund-raising effort is first for the organisation.
“The passion Arielle has for these children and the gift she has for working with them is unbelievable. All the kids love her,” she beamed.
But while Chang is pleased at JASA’s accomplishments in spreading the word about autism, she said there is still much to be done.
“We would like to sensitise persons about autism, to make it easier for families to take out their child with autism, for them not to be judged, and in general to get understanding,” she said.
The money raised by Berry will go towards JASA’s effort to establish a resource centre for parents.
“This resource centre is important because many parents don’t know where to turn when their child is diagnosed. They need a place where they can get books, DVDs, go online for information, and where they can get counselling,” she disclosed.
JASA is also lobbying for more training for special education teachers, training for all teachers and doctors to identify autistic children; and for costly medication to be listed under the National
Autism stories that we like
Sharing links and stories that we like from the net.
Autism Through a Siblings Eyes
See the video: http://www.youtube.com/watch?v=DpqZN38CMBw&feature=youtu.be
Autism’s Back-to-School Anxiety
Starting the school year can be tough for any kid, but for autistic children the transition presents unique difficulties. Priscilla Gilman on how she and her son rise to the challenge.
First Ladies from Around the World Take on Autism
Mrs. Lorna Golding represented Jamaica.
First ladies from around the globe gathered at The McCarton School in Chelsea on Tuesday morning for Autism Speaks, a breakfast discussion about the neurological disorder led by autism activist Suzanne Wright. First Ladies from around the world came together this morning to voice their support in the battle against autism at the UN Millenium Hotel in New York City.
CNN’s Chief International Correspondent, Christiane Amanpour, moderated a two hour breakfast featuring remarks from the wife of the UN Secretary General, Mrs. Ban Soon-taek, the First Lady of Iceland, Madame Dorrit Moussaieff, and the First Lady of Panama, Mrs. Vivian Fernandez de Torrijos.
The “United Nations World Focus on Autism” breakfast also included brief remarks from Autism Speaks Co-Founders, Bob and Suzanne Wright.
A panel discussion with leaders in the fields of autism research and public awareness concluded the morning event, with a short question and answer session.
Support Group meeting
The 10 Commandments of parenting a child with autism
This post is a repost from the Autismsupportnetwork.com
1) You shall seek out therapists.
Specifically those in Occupational/Physical/Speech Therapy, and ABA) to help facilitate your child’s skills and address various behavior problems. With the diagnosis of Autism are typically deficits in the areas of sensory processing, attention, grasping development, visual perceptual skills, social skills, communcation, and delayed motor skills. Keep in mind that each child is different though.
2) You shall find a support group.
Receiving the diagnosis of Autism, Aspergers, PDD, or any other diagnosis for your child can be overwhelming and the best thing that you can do is have support from those that have faced the same challenges and gain strength from one another.
3)You Shall engage in floor activities.
Several children have difficulty making eye contact and engaging with others and this is the perfect opportunity to get down where they are and enter into their world.
Stories that educate and inspire
Here are links to some pages that have inspiring or educating information.
From Autism Support Network.com:
Beware of MASK syndrome
Have you noticed any of these symptoms recently:
• Irritability?
• Hyper-vigilance?
• Repetitive speech?
• Avoidance of social interaction?
• Disregard for personal appearance and social niceties?
Autism Treatment: Understanding ABA
A long time ago, in a cheerful office on Solano Ave. in Berkeley, my son Matthew was diagnosed with autism. Since the internet had not been invented yet, I had only books in libraries and the World Book Encyclopedia to turn to. One method of autism treatment caught my eye: Lovaas, a behavior based program and it sounded very promising. Our specialist at the time advised against it because:
1) Matthew, at 5, was too old for the treatment. The window of opportunity had closed,
2) The treatment was prohibitively expensive, and not covered by insurance
3) “Children who go through Lovaas are like little robots”. (Not the words of our specialist, but of a friends brothers girlfriend who knew a lot about autism, and we believed her.)
Read more: http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=96680#ixzz1X5c1rwLh
A long time ago, in a cheerful office on Solano Ave. in Berkeley, my son Matthew was diagnosed with autism. Since the internet had not been invented yet, I had only books in libraries and the World Book Encyclopedia to turn to. One method of autism treatment caught my eye: Lovaas, a behavior based program and it sounded very promising. Our specialist at the time advised against it because:
1) Matthew, at 5, was too old for the treatment. The window of opportunity had closed,
2) The treatment was prohibitively expensive, and not covered by insurance
3) “Children who go through Lovaas are like little robots”. (Not the words of our specialist, but of a friends brothers girlfriend who knew a lot about autism, and we believed her.)
I later learned that ABA (Applied Behavior Analysis) was a little like Lovaas, only better, and an effective evidence based treatment for autism. Since I have not used this treatment for Matthew, who is now 25, I turned to my friend, younger mother, autism advocate, writer, blogger and all around smart person Shannon Des Roches Rosa for a primer on ABA which she has used successfully with her son Leo:
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Behavioral methods are either associated with autism and early intervention or, um, orca training. But guess what? You can use them to guide the behavior of almost anyone: your children, your partner, even your co-workers. I am a huge fan of behavioral methods because they have helped my son Leo gain so many skills, but I also confess that I use the methods to mold behaviors whenever I can.
How? Ignore undesired behavior, and instead seek out, role model, and reinforce desired behavior. If your subject doesn’t respond, then analyze their motivations, and appeal to those motivations instead using reinforcers (rewards) if necessary, which you can taper off once the behavior becomes routine. That’s pretty much it. I *know*.
Behavioral methods are straightforward, but they’re not instinctive unless you’re the kind of naturally empathetic and kind person I tend to avoid because you make me look like a jerk. And implementing behavioral approaches systematically and consistently, especially in parenting, takes more effort than asking children to talk about what they were feeling when they hit their brother over the head with a lunchbox (though understanding that motivation is important, too). It takes a lot more analysis and upfront effort to be proactively positive instead of impulsively negative, but the results are generally worth it because you’re not reacting and reprimanding, you’re planning and conditioning — and conditioning sticks. Behavioral methods aren’t foolproof, but they usually work. Here are some examples:
-Instead of yelling at a kid who picks her nose, hand her a tissue, and tell her how proud you are when she blows her nose instead of excavating. Actively watch for opportunities to catch her doing the right thing, and praise her with gusto when it happens. If this approach doesn’t work, up the ante with a sticker or other reward chart. If you still can’t find any motivation strong enough to stop the nose-picking, then you need to decide if it’s a critical battle, or if you should change your focus to “I’m proud of you when you don’t pick your nose in public,” and start reinforcing that behavior instead.
-Instead of chastising a co-worker who takes the last cup of coffee and leaves the carafe empty, ask them if they wouldn’t mind refilling it, and be emphatic but not patronizing in thanking them when they do so. Repeat repeat repeat. (You might want to wait until after they’ve had their first sip of coffee.)
Behavioral methods form the cornerstone of ABA therapy (Applied Behavioral Analysis), which is one of the most commonly used approaches to help children with autism and other special needs learn. it is a 1:1 — one child, one therapist instructor — intensive, data- and evidence- driven method for helping a child learn or gain life skills. Whether it takes place at home, at school, or across both places, all the learning is tracked, and the resulting data scored and analyzed to see what kind of progress the child is making.
Many autistic children have difficulty learning from their environment or in traditional educational settings, because there are so many assumptions involved in each “simple” lesson. How can children learn to write the letter A if they don’t understand how to hold a crayon, that you need to hold the paper with the other hand, or even that it helps to stay still? Kids like Leo need their learning broken down into small steps, and bolstered by repetition. This is what ABA therapy does.
ABA is not the only way to help our kids with autism and other special needs learn, and it doesn’t work for all kids with autism because there is no one type of kid with autism, just as there is no one type of gifted child or one type of Deaf child. But ABA is worth trying, to see if your child responds. ABA therapy methods taught my son Leo to dress himself, play with other kids, ask for help, and ask for a *break*. He simply did not respond to other ways of learning when he was little.
ABA therapy has been criticized for being too rigid, too intense, for using aversives or negative consequences to shape behavior, and for trying to unilaterally extinguish rather than understand coping behaviors like eye contact avoidance or hand-flapping. Adults with autism like Ari Ne’eman, president of the Austistic Self-Advocacy Network, rightfully object to some of ABA therapy’s objectives as implemented by ABA pioneer Ivar Lovaas. As Mr. Ne’eman stated during his recent keynote at Syracuse University’s Neurodiversity symposium,
(A link to his talk can be found HERE)
“In a 1965 Time Magazine article titled “Screams, Slaps, and Love,” Lovaas stated that his objective, and that how he would define success in treating these autistic children, was to make them “indistinguishable from their peers.” Because once again, that’s what we all [Autistics] wake up in the morning thinking: “How can I be indistinguishable from my peers?” And there are people who yearn to be “normal,” there are people who yearn to be more like their peers, but I think generally, the reason one yearns to do that is that someone is doing something terrible to you because you’re not “normal,” and not because you have some intrinsic desire to be like other people. But that was not Lovaas’s thinking. And Lovaas’s effort was one that was duplicated in a lot of circles, one that was seen as the gold standard with regards to autism interventions — that through a combination of rewards and punishments, autistic children could be “recovered” by virtue of having us look like our peers. And that we are wrong when we do not.”
Contemporary ABA programs bear little resemblance to those of Ivar Lovaas; they do not use punishments or aversives, are customized for each child’s skills sets and learning needs, and are flexible not only in what they teach but in where the teaching takes place. There should be no forty hours per week of sitting at a table doing boring drills!
But ABA can also condition children to be extremely obedient, which can leave them vulnerable to instruction that is contrary to their learning or sensory profiles — parents and therapists need to be extra careful about creating programs that truly address the children’s needs, not the adults’, and that continue to evolve through evidence regarding best practices. Parents also need to be aware that, like any therapeutic approach, ABA is only as good as the people implementing it.
How do you set up an ABA program? If your child is three or older, ABA therapy services are something to negotiate with your local school district. But what about families whose school district won’t pay for ABA therapy, who don’t live near any ABA agencies, or whose children are too young, or who can’t afford the often prohibitive private costs?
There used to be only one option I’d recommend: autism parent Catherine Maurice’s training manual, Behavioral Intervention for Young Children With Autism. This book uses a wealth of professional and parental guidance to teach parents and caregivers how to set up and implement their own ABA program, how to recruit therapists, how to troubleshoot, and how to manage expectations (you’ll note I’ve been talking about learning and acquiring skills, and not about “cure” or “recovery”). It is a book I still consult frequently.
But there is a comprehensive online ABA therapy resource as well: Rethink Autism (www.rethinkautism.com) All you need to access Rethink Autism is a computer with an internet connection and browser. Rethink Autism creates a customized ABA curriculum for your child, provides hundreds of concise but thorough video-based lessons supplemented by printed lesson plans to teach you how to teach your child, allows automated scheduling so that you can coordinate with with your ABA team as to who’s teaching your child what and when, and produces really straightforward data tracking and analysis. They even provide email curriculum support. This is a valuable and very well done resource, and I recommend it.
We’re grateful and lucky to have had a top-notch home program for Leo for the past eight years, run by the same behaviorist that entire time — she understands his needs, personality, and mindset. Two years ago, we had a situation that tested all our behavioral chops: Leo was acting on his resentment towards his little sister. My son may have many challenges, but his memory is tremendous, and he remembers his years as Mommy’s baby quite clearly. He had tolerated his sister for almost five years, and he was all done — Little Sister needed to go.
My husband and I had been trying to ignore Leo’s behavior (when safe to do so), or keep the two of them separated and supervised. But Leo’s ABA program supervisor pointed out that this was not a long-term approach; we were not addressing Leo’s motivation, which was to make his sister miserable enough to leave. What we needed to do was create safe positive interactions between Leo and his sister, so that Leo would start to like his little sister, see that there were benefits to having her around, and would stop trying to eject her from the picture.
It has mostly worked — though there are two kids involved in this equation, and Leo’s little sister is not much for compliance. But Leo now generally only goes after his little sister when she provokes him, and even then often shows more self-control than his siblings, telling himself “Don’t hit your sister” instead of following through physically.
He is happier, she is happier, and as a result our family is happier.
Another victory for mindful behavioral approaches.
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Shannon Des Roches Rosa‘s son Leo has been learning and acquiring skills through a modified ABA therapy program since 2003, under the guidance of the incomparable Michelle Hecht, BCBA. (The opinions expressed in this piece are Shannon’s only.)
Shannon is co-editor of the forthcoming and much anticipated book THE THINKING PERSONS GUIDE TO AUTISM.
A version of this essay was previously published at BlogHer.com.
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Have you registered with myautismteam yet? The more of us that do, the better.
Learn more about myautsimteam HERE.
***
Got autism questions? Need resources? Email me here citybights@sfgate.com and I will do my very best to help.
FOLLOW ME on FACEBOOK and TWITTER.
In case you wondered, I’m happy to talk to your group. GO HERE to learn more.
Read the first three chapters of A REGULAR GUY: GROWING UP WITH AUTISM here.
You’ll be hooked.
| September 01 2011 at 03:38 PM
Editor’s note:
This is an SFGate.com City Brights Blog. These blogs are not written or edited by SFGate or the San Francisco Chronicle. The authors are solely responsible for the content.
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Sort comments by:
sefoley
1:56 PM on September 2, 2011
Is there something here I don’t get? Isn’t this just Same Old Same Old childrearing getting-along-with-co-workers living-in-a-society stuff?
Didn’t anyone ever hear the old song, “accentuate the positive”?
OF COURSE we try to reward the good behavior, and ignore (and thus not reward) bad behavior in regular, ordinary life. (The example of the co-worker and the coffee is much to the point.) This is just common sense, yes?
Punishment for bad behavior is a last resort.
jpk1
12:53 PM on September 2, 2011
Unlike a lot of purported autism treatments, behavior analysis is backed by solid research and measurable results.
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