Lisa D Faria, a licensed clinical social worker who works with children with autism, sent this along and I thought I'd share. Please pass it along to anyone you think might benefit.
Free Parent Workshop on Floortime™ & the DIR® model – San Jose, CA Sat., Feb. 28, 2009, 10 am -12:45 pm. Sponsored by The Creekside School. Parents of children with Autism or other special needs are invited to learn how to meet, reach, and promote your child's social-emotional-cognitive growth using Floortime, a developmental play-based approach. Speakers include Lisa deFaria, LCSW, Faculty, Interdisciplinary Council on Developmental and Learning Disorders, Yana Peleg, PhD, Children’s Health Council, Lynette DiLuzio, SLP, Director, The Creekside School, Moira Sullivan, M.S., OTR/L and Matt McAlear, Easter Seals, P.L.A.Y. Project, Santa Clara. Reservations strongly encouraged, as space is limited. To register please call Anne Ernst at 408.933.8910 or email: firstname.lastname@example.org (*Adults only. We regret we cannot provide childcare at this event.)
Heather has three kids, one of which, Ian, has autism. When Ian was small, she read one of Pamela Wolfberg'sbooks and was captivated by the idea of developing a program to demystify autism and help children with autism learn social skills from their typically developing peers (and, as it turns out, vice versa).
Today the Friend 2 Friend society has done over 1,700 autism demystification programs.
The model seeks to enhance reciprocal social interaction. Says Heather,"the key to these friendship between children on the autism spectrum and their peers is to foster understanding, acceptance and empathy in an age-appropriate and sensitive manner."
Here are a few tenets of the model.
Demystication is a process that supports a general understanding of autism. A big part of demystification is "normalizing" behaviors such as hand-flapping or toe-walking by explaining it in a personal context.
Here's an example: Heather likes twirl her hair. She does this when she's stuck in traffic. When she's late, she does it faster. It doesn't get her where she's going, but it makes her feel better. We all have things that we do: toe tap, hair twirl, chew a pencil eraser--whatever--when we want to calm our bodies and our minds.
So the process of normalization is to model (demonstrate the behavior), label it, explain it and, in this way, dissolve the boundaries that divide people with disability or difference from those without.
Another tenet is that, just because children with autism may have language processing difficulties, it doesn't mean they're not understanding what you say when you talk about them. So Heather's rule is this: if they can't be part of the conversation, they shouldn't be hearing the conversation: it's a question of respect.
Not about me, without me.
So many of us grew up not knowing kids with special needs, and the idea of opening up the conversation--of asking about difference--seems almost painfully wrong. "It's not polite to stare," I was told as a child, and I'm sure you were too. But Heather's belief is that asking is important, because it opens up the conversation, which leads to understanding, accepting, and ultimately, friendship.
For more on the Friend 2 Friend Social Learning Society, check out the website here.
If you are a parent, relative, teacher or otherwise involved with a child with autism, I highly recommend you take a look at The Marin Autism Lecture Series. Talks occur monthly and focus on topics as diverse as causation (presented by representatives from The M.I.N.D. Institute at UC Davis), social skills development, Applied Behavior Analysis, the Floortime method, and others.
I have seen, met or otherwise know most of the speakers, and you can't go wrong. These are some of the best of the best, and represent a diverse range of views and some of the most thoughtful and compassionate autism treatment options in the Bay Area.
If you would like to register or would like additional information, visit The Marin County Office of Education or email Karen Kaplan, Marin Autism Lecture Series Coordinator, at karensupportsU [at] comcast [dot] net. Fee waivers may be available in some cases, so please ask Karen if you would like to attend but are unable to afford the registration fee.
New parents look forward to their child’s first words with great anticipation. We want to hear that cute little voice, and start to understand better what our child is thinking about. We dream about how easy parenting will be when our child is able to tell us what he wants with words rather than cries.
But what does it mean when the child in your life is the last one in the playgroup to utter those first words? What if you are the only one who understands those first words? What if he starts to stutter all of a sudden at age 3? And what about that 1st grader who is still lisping? When is it normal and when does it require remediation? How do we know when we should become more concerned?
“Einstein didn’t talk until he was four,” well-meaning people are fond of saying. Then there’s the other playground stand-by, “He’s a boy--boys are slower than girls to talk.” And finally we have the pediatrician’s response, “Let’s just wait and see,” which does many children a huge disservice because it delays critical early intervention so often.
Interesting piece in the New York Times today about Sensory Integration Disorder. It's such a minefield: is it or isn't it a "real" disorder? Should or shouldn't it go into the DSM? Do or don't therapies work? Should or shouldn't insurance companies have to pay for it? Should or shouldn't classrooms accommodate the sensory needs of their students? It's enough to make you want to close your eyes, put your hands over your ears, spit out your orange juice and yank off that scratchy sweater.
Susan asked an excellent question of the Family Room contributors recently: How do we as therapists talk to parents about a child’s prognosis?
Yes, parents do sometimes ask, “What is my child’s prognosis?” and that is understandable. As a parent, I am sure I’d be asking it myself. However, it may be as difficult for therapists to answer as it is for parents to ask. For one thing, what do parents mean by “prognosis”? Does it simply mean, “What will the outcome be for my child after all this therapy? What will his future look like?” Or is it a way of asking, “How close to typical do you think my child will become?” Although the latter is a perfectly fine (and understandable) goal for one’s child, I always bear in mind just how broad the range of “typical” really is; it’s a moving target. Is your typical the same as my typical? Is “quirky” as okay with you as it is with me? I like to think more in terms of “How comfortably will this child be able to socialize, play, and learn with others? How can we help him be his best self and be happy with who he is throughout childhood and into adulthood?”
The short answer is, we don’t know. I always begin my answer to that question with the “I don’t have a crystal ball” response. And I do wish I had a crystal ball. I wish I could look a parent in the eye and say with confidence, “Oh, your child will be just fine. Simply do x, y, and z!” But I can’t.
Over the years, I’ve occasionally started working with a child who appeared to have everything in place to succeed and yet the progress was slower than I expected. Conversely, there have been times when I doubted in my heart how far I could get with a child and then was happily surprised to see him gain new skills quickly. Without a doubt, I am better at predicting this than I was when I started out as a therapist; experience makes a tremendous difference. But I can still be surprised, because children with special needs are as unique as anyone else, and each has to follow his or her own developmental path. If only we had the map ahead of time!
What I feel I can say with confidence is that I pay attention to a cluster of “good signs” for a positive prognosis, which to me means that the child will have the best shot at growing to his or her fullest potential, no matter what the diagnosis is or how old the child is at the time. I’m sure we all have different internal criteria to determine prognosis, depending on the way we look at and think about the children we serve.
When a parent asks me, these are my top concerns:
1) Involved caregivers. Now, hold on a minute! You do not have to quit your job, no matter what that mom told you in the waiting room at OT. But you do need to be very involved with your child’s intervention program. You do need to make sure your child’s IFSP or IEP has appropriate, attainable goals and addresses your concerns. You do need to know all of his therapists and what they are working on. You do need to hand pick your private therapists and be as involved in sessions as you possibly can be. Organize team meetings with therapists. Have regular communication with them. Ask lots of questions. And you need to know what you can work on at home – and do it! It’s a lot of work, whether you are working outside the home or not.
2) Quality therapists. Another key to a positive prognosis is going to be the quality of your child’s intervention team rather than the quantity of therapists. You need to hear from the therapists on a regular basis; if you don’t see the therapist every week, be sure you are getting notes or regular phone meetings to discuss how things are going. I’d prefer to see a child working with just a couple of excellent therapists rather than running around to see many different people who are working on different goals in different ways. Because if your child is doing that, how on earth can you as a parent keep track of what each therapist is doing, and generalize the goals at home (see #1)? And also, isn’t everyone stretched too thin? In the long run, who does that benefit?
3) A developmental program. Yes, this is closely tied to #2, but cannot be stressed enough. If I see a child with a therapeutic program that is focused on teaching skills without foundational skills truly in place (e.g., joint attention, referencing, reciprocity, emotion-sharing, perspective-taking, strong non-verbal communication skills), I won’t feel that the child has as good a prognosis. Perhaps he will succeed academically in school, at least up until 3rd or 4th grade, but not socially. And believe me, when it comes time for your grown-up child to get a job, it is not going to be those academic skills that pay off in an interview or help him keep the job. It is going to be his ability to interact with others and work as part of a team. Without an appropriate developmental program, his future success will be tremendously impacted.
4) An integrated team. Your child’s team, whether it is made up of public therapists, private therapists, or both, must communicate with each other. Team meetings are an excellent way to do this, although they can be very difficult for parents to coordinate. I have seen many families in Chicago set up Yahoo! Groups for their child’s team, and this has been an excellent forum for therapists and parents to communicate notes, reports, comments, and questions. These are private and you can have an email sent to you each time there is a new post; I highly recommend it. A coordinated team is a committed team. And a committed team is working hard on behalf of your child. Therefore, integration of services will naturally lead to improved prognosis.
Every child is different. But until someone hands me that crystal ball I’ve been asking for, I’m going to have to rely on these other factors.
Remember when I said that my worlds were colliding? My colleague Martha sent me a link to Robert Scoble's blog today in which he interviews Sridhar Vembu, CEO of a company called Zoho. After the interview, they went for coffee and their conversation took a detour into a frank discussion of Sridhar's experiences as the parent of a child with autism. I never expected to find something like that in the course of a normal work day, and I just wanted to extend my thanks to both Robert and Sridhar for sharing this story in such an unexpected and visible place--especially on a day when the Internet is abuzz with rumors that Microsoft will buy Yahoo! (Robert is an ex senior guy at Microsoft). Talk about having your priorities straight!
Thanks to Jordan for passing this along: Autism Speaks, an organization dedicated to changing the future for all who struggle with autism spectrum disorders, has created a music video of the Five for Fighting song, "World," which features images of children with autism, and their families. It is a truly moving video and was the work of Bill Shea. The band is generously donating $0.49 to Autism Speaks for each time the video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please click here and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.
On a similar topic, it seems that we are moving beyond the Rain Man era to a more nuanced (more, not perfect) depiction of life with autism. Here are two that I know of: I actually saw Magnificent Seven (no, not the one with Yul Brynner), on a plane ride back East with my family. I kind of liked it, actually, with several rather significant reservations, not the least of which was how fresh and gorgeous Helena Bonham Carter managed to look despite raising three special needs boys and three typical girls--with no visible source of income. And today I heard about another BBC movie called After Thomas that apparently aired last night. It's going to run again, so you might want to check it out if you haven't seen it. And if you have seen either of these, let us know what you thought.
Yesterday I went to the Support for Families of Children with Disabilities 2007 Information & Resource Conference. It amazes me what this group, which seems to be run on about five dollars and sheer will, can pull off. They ran 14 workshops in two tracks, ranging from "Adaptive Sports" to "Planning for Inclusive Transitions Across School Levels" to "Legal Rights of Public School Students with Disabilities." I chose two subjects that are near and dear to my heart these days: "Food & Eating Issues for Children with Autism" and "Toilet Training Children with Special Needs," the latter of which was run by Melissa Willa of Gateway Learning Group. Both sessions took a behavioral approach, and I could again see how these new ways of conducting ABA can open up whole worlds for children: a new degree of independence, the tolerance for--even interest in--new types of foods. The initial approach in these specific instances may be more adult led, but the consequences ultimately empower the kids to make a broader range of choices for themselves over time. So again that difficult balance between ABA and Floortime, between the child's agenda and the therapist's.
Both sessions reminded me that too often we rush into our kids' programs without really getting enough of the context behind what our providers plan to do. As a result, things that you think of as kind of optional (switching reinforcers, or forgetting to tell your school what you're doing at home) can have an impact and stretch out the learning process. And things that you slowly begin to disagree with (for example, the degree to which your child is pushed in a particular session), can become a real source of tension. So it was helpful to have an opportunity to sit down and start from the very beginning.
I can't possibly do justice to each session, but I do have one suggestion, and it's pretty simple. Even if you do team meetings already, try to find some non-therapy, non-IEP time to talk to your providers individually, even for a few minutes, so you can discuss what's on your mind and start to work it into your child's program. I realized yesterday that I had been worrying about Isaac's somewhat limited food repertoire, but in the chaos of everything else I wasn't even aware of it until I saw this class on the agenda. So now I'll approach his case manager to talk about it, and probably even add it to the IEP. (Tip: you CAN add eating and potty objectives to your child's IEP...I didn't realize that before).
Last thing, since I'm apparently on an advice kick today: take a breath. Not every minute of our lives should be a learning opportunity, or a heroically therapeutic moment. Autism may be a communication disorder, but there's plenty of communication in stillness, and silence, too. (Not to mention the guilty pleasure of sharing a pizza while you watch "Dancing with The Stars" together.)
Tomorrow, Support for Families will be hosting their annual “Info Fair” at John O’Connell High School in San Francisco. This is a free event for families of children with special needs, the professionals who work with them, and the community at large. The fair will feature a variety of workshops on a range of topics including adaptive sports, toilet training children with special needs, legal rights of public school students with disabilities and food and eating issues for children with autism. I'll be there and will post on what I learn later this weekend. Stay tuned.
In other completely unrelated news, Isaac now seems to be a big fan of Bollywood music. We had a little dance party at home tonight: just the three of us, plus the incomparable sights and sounds of Chaiya, Chaiya. Lifts your spirits on a drizzly Friday night, after a long and stressful week.