If you've ever met me, if you have visited this blog before, you already know that I want you to see Autism: The Musical for so many reasons.
But did you know that, as of this week, it's right here on the HBO web site - and free? It's 93 minutes of your life that are well spent.
Matt and I watched the documentary together tonight and I was so happy to be able to share it with him. We went through a lot of Kleenex. Both of us. A lot.
Some of my favorite writers out there who have children on the autism spectrum have written eloquently about the film here and here and here.
I can't speak about it from the parent's perspective, but I can say a few things about it as a communication specialist.
First of all, I had forgotten entirely that Elaine Hall (the director of The Miracle Project) referred to Dr. Stanley Greenspan and all that she learned from him that led to the amazing Floortime work she did with her son Neal. It makes perfect sense, given the nature of the program she put together for the kids, how she ran it, and what her agenda was (i.e., for the kids to have a great time and feel good about themselves). The way those kids felt when they were at The Miracle Project (throughout the entire 6 month process, not simply the performance) - good about themselves, loved, able to make friends, safe to explore some of the scariest and saddest parts of their lives - is how kids feel when they walk into our clinic here in Chicago and also what I saw unfolding every single day when I worked at Oak Hill School in the Bay Area. For kids like these, there is nothing better than having a place like this available to them and yet it seems to be so rare. I watch how Elaine and her staff interact with the kids and find it completely familiar and at the same time so uplifting to observe as an audience member.
I realized in this second viewing how much the film influenced me the first time. As a therapist, having such clear windows into the children's home lives was a gift. To hear parents talk openly about the strain autism has put on their marriages, to see what some of the interactions are like when there is not a therapist in the mix, and to be reminded of the nonexistent safety net our society holds out around families with these particular challenges - all of this has been priceless for me. I think that reading blogs has made a difference for me as well, but since watching Autism: The Musical the first time, I know I have been asking different questions and focusing a lot more on the emotional health of the entire family. We talk about support systems, who is getting how much respite and when, and how the sibling relationships are going. I do that now before we even deal with the communication needs, because a family in emotional crisis is going to have a hard time taking on the extra work required to learn new communication strategies, and in the end, if we don't have strong mental health, what do we have? I remember now how strongly I felt that message last fall when I saw this film.
The fact that there is always more to learn can be both overwhelming and inspirational. Yesterday I worked a 13.5 hour day. I didn't see my kids all day and got home after 10:30 pm. I'm tired. I feel like I'm fighting the illnesses that have plagued this household for the past few weeks and wonder which day will be the one when my body gives in. Some nights, to be honest, I look at the next day's schedule and think, "That would be a good one for the flu to hit - how am I going to do all that?" This work is hard. There are moments and hours so challenging that no one but my colleagues or a child's parent could understand. If I didn't have my days off at home to recharge with my kids I couldn't sustain it right now. It's incredibly rewarding and satisfying and I'd rather be doing nothing else in the world, but it's hard.
I need to watch this movie periodically. I need to sit back and watch how those children changed; how they lit up when someone understood them and when they expressed something new and wonderful. I need to see the changes in their parents and catch those moments of joy on their faces, and have a good cry with them all from afar. Because I know them all - not as individuals but as composites: a little of him, a little of her, and - voila! - there's someone I know and love. Observing it without being a part of it helps.
So yes, the fact that there is always more to learn, always more to do, can be both overwhelming and inspirational. Tonight it's leaning towards inspirational for me.
Showing posts with label Autism/Aspergers. Show all posts
Showing posts with label Autism/Aspergers. Show all posts
Thursday, March 27, 2008
Monday, March 24, 2008
The Men are ON IT
Those of you who have met my husband Matt in person already know that he is cool: far more techno-savvy than I am, well read, a great writer, and just generally hip in that "I can wear jeans and a black t-shirt every day and still be cooler than my cashmere-wearing wife" way. (And he'll wear a floral button-down shirt when we go out - how's that for cool?)He's also been known to holler at the radio when he hears someone talking about autism the Wrong Way.
The man is edumacated.
It should not have surprised me, therefore, when he said tonight, "Hey, I subscribe to the Jumping Monkeys podcast, and Susan Etlinger was on this week!"
Damn! He was all over it. What's cool, happening, hip, and now. I mean, I knew about this exciting bit of Internet news because I'd seen it on Susan's blog at dark o'clock this morning, but I had never heard of Jumping Monkeys.
So, be hip like Matt and go listen to Susan talking about autism at Jumping Monkeys! You won't be sorry.
***
While I was writing the blurb above, my father called from California. Yet another man in my family who is all about what's hip and happening! He called to tell me that he'd heard two interesting NPR stories while commuting today - I am starting to feel like this is some kind of conspiracy of men-in-the-know. Here are the stories he recommended to me:
Confronting 'That Autism Thing' on Day to Day. A mother explains how different autism is than she had imagined, and tells about how a mall Santa recognized autism in her son when a neurologist didn't. Also highlighted is how her family's visit to the wonderful Dr. Rick Solomon, DIR faculty member who founded The Play Project in Michigan, gave them a great deal of hope for their child. Part II will be aired tomorrow.
"The Ten-Year Nap: Stay-at-Home Mama Drama" interview with author Meg Wolitzer on Fresh Air. This is an interesting piece. The novel is about four bright, well-educated women who leave their careers to stay home full-time with their children. It does not sound polemic, coming down in favor of staying home or working outside the home, but rather explores what happens in these women's lives when their children are all in school full-time. She suggests that the critical thing for women is to have "a sense of purpose" in life, whatever that may be, which is refreshing. Wolitzer makes some points that will simply need their very own blog posts later on.
Lots to read and listen to out there - go on!
(And PS: Don't forget that Autism: The Musical is on HBO Tuesday night!)
Friday, March 21, 2008
It's Take Your Wonderfriends to Work Day!
I am aware that I haven't talked about much of a professional nature here lately (unless you count the fact that I wear those cashmere sweaters to work), and I've wondered to myself why that is. I came to realize that my attention cycles through the major things in my life over time. When we moved here I was immediately aware of the need to get our family and home settled, but then once I started to set up my practice in Chicago I had to really throw myself into it with a lot of energy to get it up and running; I started with a full caseload the day I opened my doors, and that was very challenging. And so I think this past fall, when I took even more clients and there were far too many days that felt like the wheels might be falling off the bus - and then in the winter, when the kids were on sensory overload and Lyle was in dysregulation hell - I realized that it was time to shift the balance of my attention back to my family.
It's not as if I'm ever not present in one place or another, it has more to do with how I choose to tip the scale. Right now it's tipped in favor of home. And so, although I'm loving my work, working hard, seeing great progress in the kids, and continuing to do those fabulous Date Nights at the clinic, my thoughts (and, therefore, blog posts) are more firmly planted at home. I have no doubt that on some level my clients and colleagues feel the difference. I don't return calls or emails as fast. My notes don't always get sent around exactly on time. I forget things once in a while. Everything is getting done and done well enough, just not with the same level of precision.
However, exciting things are happening at work that I would like to share with you, and I'll start with one of them today. You may remember that I've participated in two SCERTS Model trainings this year and that I am a huge fan of the program for kids on the autism spectrum. It fills an enormous void in that it's designed to train school districts to use the SCERTS curriculum, which a) is developmentally appropriate, b) emphasizes social communication and emotional regulation as well as laying out specific strategies that parents, teachers, and therapists need to work on to support the child, c) is very family-centered, and d) encompasses the current best practices for children with ASD as described by the National Research Council. SCERTS is taking off around the U.S. as well as abroad; Great Britain in particular has been extremely open to adopting the curriculum. It is an interesting side note that ABA therapy, so popular here in the States, is far less common in England; this has probably led to a greater openness across the board for a solid developmental program since this tends to be their philosophical bent to begin with.
Given our strong belief in the SCERTS Model, my wonderful, talented colleague (who is also a certified RDI consultant and in the process of DIR certification) and I have created our own SCERTS-based therapeutic group program for the coming school year. We are going to work with 6 children, preschool aged, who are non-verbal or have emerging verbal language skills. We hand-picked the children from our current caseloads and all of those families have accepted. (In fact, we have turned away quite a few other families who have already heard about our program from parents and other therapists. While this is a hard thing for us to do, the quality of the program will drop significantly if we take more children than our staff and space allows.)
The program, called L.E.E.P. Into Communication, will run five mornings a week for 3 hours per day. My colleague will be there all five days and I will work three days as I do now. We will also have two paid assistants (who already work at the clinic) and 2-3 interns (mine will be an SLP grad student from Northwestern). This will give us as close to a 1:1 ratio every day as we can get. The kids will have SCERTS assessments completed by the time we start their group in the fall and each will have very detailed, highly individualized therapeutic goals that will be chosen in conjunction with their parents and based on the assessments (which will be naturalistic observations, not formal testing). We are asking parents to commit to spending a morning with us at least once every 6 weeks and we will hold meetings with parents as often. We will contract with a DIR faculty member (clinical psychologist) and an excellent OT to come in and consult with us about our program on an on-going basis throughout the year, and we will offer movement classes with a children's theater specialist each week. Whew!
It is really exciting to give this group of children an opportunity to have such a fun, appropriate, individualized program that also allows them the chance to begin to form bonds and socialize with peers. This particular group does not generally have the chance to do so in other settings and it's such an important part of their development.
Because I know that many of you are going to ask, I will explain how this will be set up financially. We are independent practitioners, creating our dream program. We have cut back on our typical rates in order to bring the tuition down, but it is still very costly due to all of our expenses, including the additional paid staff members and consultants. Our clients pay out of pocket and some of that is reimbursed by insurance; the hours when I will be there next year can be submitted to insurance by the families under speech therapy. By no means are all of our families extremely wealthy; many of them, like many of you out there, are simply doing what they know their children need no matter the cost and are under great financial strain. We have been very open with the families about wanting to brainstorm ways to cut the costs further, and there may be a fund-raiser to defray some of it, but the families have committed to attending either way.
With our local school district services in bad shape due to poor funding and inadequate training, and the deplorable state of insurance coverage for families in our country, there are no easy answers. Our best bet as therapists is to create the best program we can imagine and make it work for the kids who need it. We are thrilled that everyone has signed on so quickly and are looking forward to the adventures that await us next year. I'll keep you posted.
It's not as if I'm ever not present in one place or another, it has more to do with how I choose to tip the scale. Right now it's tipped in favor of home. And so, although I'm loving my work, working hard, seeing great progress in the kids, and continuing to do those fabulous Date Nights at the clinic, my thoughts (and, therefore, blog posts) are more firmly planted at home. I have no doubt that on some level my clients and colleagues feel the difference. I don't return calls or emails as fast. My notes don't always get sent around exactly on time. I forget things once in a while. Everything is getting done and done well enough, just not with the same level of precision.
However, exciting things are happening at work that I would like to share with you, and I'll start with one of them today. You may remember that I've participated in two SCERTS Model trainings this year and that I am a huge fan of the program for kids on the autism spectrum. It fills an enormous void in that it's designed to train school districts to use the SCERTS curriculum, which a) is developmentally appropriate, b) emphasizes social communication and emotional regulation as well as laying out specific strategies that parents, teachers, and therapists need to work on to support the child, c) is very family-centered, and d) encompasses the current best practices for children with ASD as described by the National Research Council. SCERTS is taking off around the U.S. as well as abroad; Great Britain in particular has been extremely open to adopting the curriculum. It is an interesting side note that ABA therapy, so popular here in the States, is far less common in England; this has probably led to a greater openness across the board for a solid developmental program since this tends to be their philosophical bent to begin with.
Given our strong belief in the SCERTS Model, my wonderful, talented colleague (who is also a certified RDI consultant and in the process of DIR certification) and I have created our own SCERTS-based therapeutic group program for the coming school year. We are going to work with 6 children, preschool aged, who are non-verbal or have emerging verbal language skills. We hand-picked the children from our current caseloads and all of those families have accepted. (In fact, we have turned away quite a few other families who have already heard about our program from parents and other therapists. While this is a hard thing for us to do, the quality of the program will drop significantly if we take more children than our staff and space allows.)
The program, called L.E.E.P. Into Communication, will run five mornings a week for 3 hours per day. My colleague will be there all five days and I will work three days as I do now. We will also have two paid assistants (who already work at the clinic) and 2-3 interns (mine will be an SLP grad student from Northwestern). This will give us as close to a 1:1 ratio every day as we can get. The kids will have SCERTS assessments completed by the time we start their group in the fall and each will have very detailed, highly individualized therapeutic goals that will be chosen in conjunction with their parents and based on the assessments (which will be naturalistic observations, not formal testing). We are asking parents to commit to spending a morning with us at least once every 6 weeks and we will hold meetings with parents as often. We will contract with a DIR faculty member (clinical psychologist) and an excellent OT to come in and consult with us about our program on an on-going basis throughout the year, and we will offer movement classes with a children's theater specialist each week. Whew!
It is really exciting to give this group of children an opportunity to have such a fun, appropriate, individualized program that also allows them the chance to begin to form bonds and socialize with peers. This particular group does not generally have the chance to do so in other settings and it's such an important part of their development.
Because I know that many of you are going to ask, I will explain how this will be set up financially. We are independent practitioners, creating our dream program. We have cut back on our typical rates in order to bring the tuition down, but it is still very costly due to all of our expenses, including the additional paid staff members and consultants. Our clients pay out of pocket and some of that is reimbursed by insurance; the hours when I will be there next year can be submitted to insurance by the families under speech therapy. By no means are all of our families extremely wealthy; many of them, like many of you out there, are simply doing what they know their children need no matter the cost and are under great financial strain. We have been very open with the families about wanting to brainstorm ways to cut the costs further, and there may be a fund-raiser to defray some of it, but the families have committed to attending either way.
With our local school district services in bad shape due to poor funding and inadequate training, and the deplorable state of insurance coverage for families in our country, there are no easy answers. Our best bet as therapists is to create the best program we can imagine and make it work for the kids who need it. We are thrilled that everyone has signed on so quickly and are looking forward to the adventures that await us next year. I'll keep you posted.
Wednesday, March 19, 2008
Autism: The Musical - Coming to a TV Near You
Okay, so I didn't quite get everything up here today that I'd hoped for, but it was a bizarre day for sure. Turns out poor Baxter has the actual flu virus; that would account for all that coughing the past few days and the fever that popped up yesterday afternoon. The doctor said we are extremely lucky he had a flu shot (yes, he did!) because the kids who didn't are barely able to sit up on the examining table. And this makes me glad that he and Lyle and I got flu shots. Matt? Not so much.
Wish us luck.
***
But listen, one of the most important things I wanted to say today must be said before I go to bed. (What? More important than her Word Cloud? How could it be?)
You may remember that back in October I wrote this post after going to a Chicago premiere viewing of the incredible documentary Autism: The Musical. A quote from that post somehow wound up on their website in the "reviews" section. And since I said this about it and it went onto their site, I am now automatically an expert on the movie. So listen to what I am telling you! (Bossy much?)
Autism: The Musical will premiere on HBO on Tuesday, March 25!
You need to see this movie. It does not matter whether your child has autism, or if you know a single child with autism. Because whatever you think you know about the highs and lows of life on the spectrum, you will find that a great deal - if not all - of what you "knew" has changed when it's over. Out of my customary 5, I give it 5 stars and 4.5 teardrops. Seriously - have the tissues close at hand. You'll thank me.
And here's the cool part. If, like me, you don't get cable, and if you are not lucky enough to have in-laws who have their TiVo scheduled to record it for you like I do, you still won't miss it! It will be streamed live on the web the next day for you.
For more detailed information about Autism: The Musical, I would encourage you to visit the website or head over to Susan Etlinger's recent post on BabyCenter.
And then go watch the movie, Wonderfriends.
Okay?
Wish us luck.
***
But listen, one of the most important things I wanted to say today must be said before I go to bed. (What? More important than her Word Cloud? How could it be?)
You may remember that back in October I wrote this post after going to a Chicago premiere viewing of the incredible documentary Autism: The Musical. A quote from that post somehow wound up on their website in the "reviews" section. And since I said this about it and it went onto their site, I am now automatically an expert on the movie. So listen to what I am telling you! (Bossy much?)
Autism: The Musical will premiere on HBO on Tuesday, March 25!
You need to see this movie. It does not matter whether your child has autism, or if you know a single child with autism. Because whatever you think you know about the highs and lows of life on the spectrum, you will find that a great deal - if not all - of what you "knew" has changed when it's over. Out of my customary 5, I give it 5 stars and 4.5 teardrops. Seriously - have the tissues close at hand. You'll thank me.
And here's the cool part. If, like me, you don't get cable, and if you are not lucky enough to have in-laws who have their TiVo scheduled to record it for you like I do, you still won't miss it! It will be streamed live on the web the next day for you.
For more detailed information about Autism: The Musical, I would encourage you to visit the website or head over to Susan Etlinger's recent post on BabyCenter.
And then go watch the movie, Wonderfriends.
Okay?
Friday, March 7, 2008
Autism and Vaccines
I'm sure many of you are aware of the headline story today informing us that the government awarded a great deal of money to the family of a 9-year old girl whose underlying mitochondrial disorder was aggravated after receiving 5 shots containing 9 vaccines at the age of 18 months. Her disorder's reaction to those shots took on the appearance of autistic-like characteristics.
And so, because we seem to live with one foot in Sensationalist News Hell and the other foot in Short Attention Span Hell, the buzz is that the government has acknowledged all of a sudden that there is a link between vaccines and autism. This is not the case, folks. Honestly, much as I would like the answer to be that easy, it is not the case; probably not ever, but at least not in this situation.
Two very intelligent woman have written brilliant pieces on this topic today and so, rather than attempting to unravel it for you myself in a less-than-brilliant manner, I am going to suggest you take a moment today to read what Dr. Kristina Chew has to say with these three posts at Autism Vox and then hop on over to hear what my friend Dr. Emily Willingham has to say at A Life Less Ordinary because she has her own way of explaining the genetic piece of the puzzle to us so that we can understand it.
We need more intelligent people out there who are able to talk about this issue with some facts that are based in reality, so read on!
And so, because we seem to live with one foot in Sensationalist News Hell and the other foot in Short Attention Span Hell, the buzz is that the government has acknowledged all of a sudden that there is a link between vaccines and autism. This is not the case, folks. Honestly, much as I would like the answer to be that easy, it is not the case; probably not ever, but at least not in this situation.
Two very intelligent woman have written brilliant pieces on this topic today and so, rather than attempting to unravel it for you myself in a less-than-brilliant manner, I am going to suggest you take a moment today to read what Dr. Kristina Chew has to say with these three posts at Autism Vox and then hop on over to hear what my friend Dr. Emily Willingham has to say at A Life Less Ordinary because she has her own way of explaining the genetic piece of the puzzle to us so that we can understand it.
We need more intelligent people out there who are able to talk about this issue with some facts that are based in reality, so read on!
Tuesday, March 4, 2008
Navigating Negative Emotions (Part One)
Come on over to The Family Room, where I've got a new post up tonight about why some children with autistic spectrum disorders have such a difficult time accepting and understanding negative emotions in themselves and others.
(And after you've read it, keep reading, because if you haven't read Susan's blog yet, you're missing out!)
(And after you've read it, keep reading, because if you haven't read Susan's blog yet, you're missing out!)
Wednesday, January 9, 2008
What Goes Around
This morning I clicked over to read Susan Etlinger's latest post on The Family Room blog. Among her other treasures of the day were a couple of new blog recommendations for her readers. Both are excellent. One of these, in fact, was a blog I just discovered myself this week, that of my friend Emily in Texas. Aptly titled A Life Less Ordinary, Emily writes about life with her three fantastic little boys, who are perfectly extraordinary.
Finding Emily's blog was a gift this week. We were friends back in San Francisco, brought together by Baxter and her oldest son, TH, who were absolutely the best of friends in preschool. Our families began to meet up for playdates, and Emily and I always seemed to manage dinners out on each other's wedding anniversaries (without our spouses). I'm still not sure how it worked out that way, but it did. That is, until they moved to Texas and we left for Chicago in the summer of '06. With work and distance and all these boys, Emily and I have only stayed in touch sporadically, so you can imagine my joy when I was able to sit down, read her posts and look at her photos - and TH's incredible artwork!! - on her blog all at once.
Thus, I was thrilled to see that Susan had linked to Emily today. Coincidentally enough, Emily had just posted to her own readers that they should come on over and check out The Wonderwheel, writing awfully sweet and humbling things about this blog and my work. (Aww, shucks.)
I can't let this circle of blog love stop here. All day I was thinking, "I need to bring this full circle and link back to Susan now!" But here's the thing. All I could think of was how many of you are out there, blogging about your very special kids. Yes, I know, all kids are special (yadda, yadda, yadda), and I enjoy reading some blogs that are written by parents of typically-developing kids too, but those of you who are writing so beautifully about the winding path you walk with your extraordinary kids, you all deserve a really huge thank you from me.
So here we go:
You and you and also you and you..and you and of course you, you, and you - and also you, you, and you...and all the rest of you out there whom I haven't yet read or haven't visited recently enough because eventually a girl's gotta sleep...
Thank you for letting me in and not making me feel like an impostor for reading and commenting on your blogs. Thank you for reading and being a part of my life through my own blog. Thank you for helping me to bridge - just a little bit - the wide gap between parents with typically-developing kids and those who are on their own unique path through life. Thank you for your insights into parenting, which not only allow me to be a better parent myself but have dramatically changed the way I work with families.
Thank you, Susan, and thank you, Emily.
Thank you.
All of you.
Sunday, January 6, 2008
True Confessions of a Late-Night Reader
I'm having, you know, just a wee bit of difficulty keeping to my New Year's resolution to get more sleep. You can call it lack of will-power - or, perhaps, ambivalence - but I am blaming it on the really, really good books I've been reading lately.
You see, for Christmas I received Running with Scissors by Augusten Burroughs - I mean, seriously, folks, this book is uniquely compelling. "Will this kid actually survive his own childhood? Is it possible for so many people, all these families, to be this dysfunctional? Turn the page to find out, because it is about to get worse!" I loved reading about this family from the perspective of the other sibling - his older brother is John Elder Robison who wrote the wonderful Look Me in the Eye: My Life with Asperger's which I reviewed here last fall. Very talented brothers, those two. I'm not sure if Running with Scissors ended up more heavily weighted on the hilarious side or the heartbreaking side (probably the latter), but it was well-written and kept me reading long past my new-and-improved bedtime, whatever that's supposed to be. (Hmm, maybe that's my problem!) The day I finished this book I stopped at Black Oak Books in San Francisco and picked up another of his books.
But then, the next one I read (also a Christmas gift) was The Kite Runner by Khaled Hosseini. Holy moly, have you read this book? If not, go out and pick up a copy - you won't be sorry. Amazing story, beautiful writing. What a tale. I learned more about Afghanistan from that book (and A Thousand Splendid Suns, which I read recently by the same author - also an excellent read) than from any other source. I am now extremely frightened by photos of the Taliban, which is an appropriate response, let me tell you. When I got to the last quarter of The Kite Runner, I couldn't put it down. I ended up reading it well past 1:00 AM on Saturday morning to finish it. I cannot remember the last time that I read the conclusion of a book sitting up in my bed in the middle of the night, hand half over my exhausted eyes out of fear for the protagonist. This, like Running with Scissors in its own completely different way, was a story of survival and redemption.
Page-turners, I tell you. They'll keep you up past your bedtime. And that's a very, very good thing.
You see, for Christmas I received Running with Scissors by Augusten Burroughs - I mean, seriously, folks, this book is uniquely compelling. "Will this kid actually survive his own childhood? Is it possible for so many people, all these families, to be this dysfunctional? Turn the page to find out, because it is about to get worse!" I loved reading about this family from the perspective of the other sibling - his older brother is John Elder Robison who wrote the wonderful Look Me in the Eye: My Life with Asperger's which I reviewed here last fall. Very talented brothers, those two. I'm not sure if Running with Scissors ended up more heavily weighted on the hilarious side or the heartbreaking side (probably the latter), but it was well-written and kept me reading long past my new-and-improved bedtime, whatever that's supposed to be. (Hmm, maybe that's my problem!) The day I finished this book I stopped at Black Oak Books in San Francisco and picked up another of his books.
But then, the next one I read (also a Christmas gift) was The Kite Runner by Khaled Hosseini. Holy moly, have you read this book? If not, go out and pick up a copy - you won't be sorry. Amazing story, beautiful writing. What a tale. I learned more about Afghanistan from that book (and A Thousand Splendid Suns, which I read recently by the same author - also an excellent read) than from any other source. I am now extremely frightened by photos of the Taliban, which is an appropriate response, let me tell you. When I got to the last quarter of The Kite Runner, I couldn't put it down. I ended up reading it well past 1:00 AM on Saturday morning to finish it. I cannot remember the last time that I read the conclusion of a book sitting up in my bed in the middle of the night, hand half over my exhausted eyes out of fear for the protagonist. This, like Running with Scissors in its own completely different way, was a story of survival and redemption.
Page-turners, I tell you. They'll keep you up past your bedtime. And that's a very, very good thing.
****
And now it's time for an Internet vote! Which of these books on my nightstand shall be next? Submit your vote now (quick!)
Eat, Pray, Love by Elizabeth Gilbert
or
Where I Lived, and What I Lived For by Henry David Thoreau
Eat, Pray, Love by Elizabeth Gilbert
or
Where I Lived, and What I Lived For by Henry David Thoreau
Wednesday, December 19, 2007
Saturday, December 15, 2007
Murky Waters
My three year old exclaimed joyfully over the gift he received from Santa at my clinic's holiday party today. As he pulled out one Cars character and then another, a father watched with interest from across the table. He happened to be one of the few parents I'd never met, because his child only comes on a day when I'm not working. Turns out, his young son, also intently watching Lyle open "Lizzie" and "Boost", is a big Cars fan. Very few people - even among the fans - know a lesser-known character like "Boost", who shows up in the film for about one minute.
"Oh, we know our Cars!" the dad emphasized, giving me a knowing look. It suddenly occurred to me that I was getting the "our kids share this obsession" look from a parent who most likely thought that I was the parent of a child with special needs, not one of the hosting therapists.
This doesn't bother me, but it is always an interesting exercise for me to see my kids through the eyes of other parents who assume - because of the context, where we are - that one or both of my boys has special needs.
I remember the first time this happened, which was when Baxter was almost three and we were waiting to sign in for the Cure Autism Now: Walk Now event in San Francisco in 2003. There were precious few families around us who had only neurotypical kids. I realized this and looked over at Baxter, curious to know if he was wondering about any of the out-of-the-ordinary behaviors that barely register with me anymore - only to find him toe walking and twirling, and watching as he crashed into his father on purpose to stop himself. I giggled over the irony at the time, but also found it fascinating to realize that, put in the context of kids with sensory processing and communication disorders, my neurotypical child fit right in, by all appearances.
It's true. Baxter toe-walked his way through life until he was about 4 1/2 years old; only when he was excited but, truth be told, he was pretty much excited all the time. He was also under-responsive to touch, needing a lot of proprioceptive input to his body. He could spend hours jumping and crashing non-stop, and to this day (to a much lesser extent) seeks that out. When Baxter was four years old, I suffered through some very long Music Together sessions where he ran in circles around the room (which encouraged other kids to follow him, of course) and eventually crashed so that there was a huge pile of preschoolers on top of him. (Remember that, Stacy?) This while the rest of the class sat tamely banging two red sticks together to "Little Red Wagon". Thankfully - and to Music Together's credit (I love that program!) - the teacher had enough training to know that developmentally that's how some kids process music, and it was fine. (For the record, I'd be very uncomfortable with any music class for young children that insisted they sit to participate. Don't laugh - they're out there.) With my introduction of a modified ALERT program, Baxter learned to calm himself and participate more conventionally. Eventually. (And now I'm a little freaked out because - did you notice? - the Music Together and ALERT program websites look oddly similar!)
At the same time, he was over-responsive around his face (i.e., tactile defensiveness) and literally gagged when we put on sunscreen. He still can't stand any lotion on his face and barely tolerates the application of it all summer.
And while to me all of this raises huge red flags for sensory processing disorder, and I treated each of these symptoms as I would in a client (with input from OT colleagues), he is a typically developing child.
Then there's Lyle. Lyle, who is three now himself, demonstrates none of those same characteristics but, as I've recently discussed, has his own set of challenges.
I'm not sharing this because I think that as a parent I am in the same boat as my clients' parents. I do not believe that my experience is the same. At all.
I am sharing it because I truly understand when the mom of a newly-diagnosed child with autism says, "I guess I thought all kids did those things," or a dad tells me, "We thought he was just quirky." But the most difficult of all is, "How do I know if this issue is a typical part of development, or related to his special needs?"
It is murky. Downright murky, indeed.
"Oh, we know our Cars!" the dad emphasized, giving me a knowing look. It suddenly occurred to me that I was getting the "our kids share this obsession" look from a parent who most likely thought that I was the parent of a child with special needs, not one of the hosting therapists.
This doesn't bother me, but it is always an interesting exercise for me to see my kids through the eyes of other parents who assume - because of the context, where we are - that one or both of my boys has special needs.
I remember the first time this happened, which was when Baxter was almost three and we were waiting to sign in for the Cure Autism Now: Walk Now event in San Francisco in 2003. There were precious few families around us who had only neurotypical kids. I realized this and looked over at Baxter, curious to know if he was wondering about any of the out-of-the-ordinary behaviors that barely register with me anymore - only to find him toe walking and twirling, and watching as he crashed into his father on purpose to stop himself. I giggled over the irony at the time, but also found it fascinating to realize that, put in the context of kids with sensory processing and communication disorders, my neurotypical child fit right in, by all appearances.
It's true. Baxter toe-walked his way through life until he was about 4 1/2 years old; only when he was excited but, truth be told, he was pretty much excited all the time. He was also under-responsive to touch, needing a lot of proprioceptive input to his body. He could spend hours jumping and crashing non-stop, and to this day (to a much lesser extent) seeks that out. When Baxter was four years old, I suffered through some very long Music Together sessions where he ran in circles around the room (which encouraged other kids to follow him, of course) and eventually crashed so that there was a huge pile of preschoolers on top of him. (Remember that, Stacy?) This while the rest of the class sat tamely banging two red sticks together to "Little Red Wagon". Thankfully - and to Music Together's credit (I love that program!) - the teacher had enough training to know that developmentally that's how some kids process music, and it was fine. (For the record, I'd be very uncomfortable with any music class for young children that insisted they sit to participate. Don't laugh - they're out there.) With my introduction of a modified ALERT program, Baxter learned to calm himself and participate more conventionally. Eventually. (And now I'm a little freaked out because - did you notice? - the Music Together and ALERT program websites look oddly similar!)
At the same time, he was over-responsive around his face (i.e., tactile defensiveness) and literally gagged when we put on sunscreen. He still can't stand any lotion on his face and barely tolerates the application of it all summer.
And while to me all of this raises huge red flags for sensory processing disorder, and I treated each of these symptoms as I would in a client (with input from OT colleagues), he is a typically developing child.
Then there's Lyle. Lyle, who is three now himself, demonstrates none of those same characteristics but, as I've recently discussed, has his own set of challenges.
I'm not sharing this because I think that as a parent I am in the same boat as my clients' parents. I do not believe that my experience is the same. At all.
I am sharing it because I truly understand when the mom of a newly-diagnosed child with autism says, "I guess I thought all kids did those things," or a dad tells me, "We thought he was just quirky." But the most difficult of all is, "How do I know if this issue is a typical part of development, or related to his special needs?"
It is murky. Downright murky, indeed.
Thursday, December 13, 2007
Surviving the Holidays with Sensitive Kids
Both of my boys are sensitive guys. I believe that, in the long-term, this is a good quality in the males of our species, I really do. In the short-term it can be a bit tough, however. Among other things, it means that Baxter cries easily and was afraid of segments on Sesame Street until he was about 6 years old. I mean, truly, there is never any doubt about how that boy is feeling and it's been relatively easy to help him learn to manage his emotions.But Lyle, though probably even more sensitive and finely-tuned than his big brother, has been much harder to read. Rather than crying when he's scared or his feelings have been hurt, he is likely to feel confused and hide behind what I think of as his "wacky" behaviors: moodiness, hitting, sudden shrieking, twirling in circles, and jumping on top of his brother.
I see children through an uncommon lens, because of my training. I'm sure this has pros and cons for my family. In my book, children's behavior is highly meaningful - they are communicating something with their actions, and our job is to watch, listen, and interpret the message in order to respond appropriately.
So when Lyle's "wacky" behaviors began to escalate in the past week, I took it very seriously and watched carefully. In addition to the usuals - which were significantly heightened - he began to bite his shirt collar or jacket a lot - and a couple of times even bit his own hand earlier this week.
Now, listen up: if you are my child and you want me to go into Full Alert Mode, just start biting your hand. I'm all yours.
I watched. I listened. I talked to Matt. I thought about it a lot.
Let's see, what's going on for this shy little guy...Christmas is coming (exciting)...Santa is coming (scary and exciting)...he was invited to his first school friend's birthday party (scary and exciting)...my work party is this Saturday, complete with a live Santa (scary and exciting)...Mommy was a stress case the last two weeks (scary)...there are new decorations all over the house - and everywhere else, for that matter (exciting but different from the norm)...we'll be going to California in less than two weeks (exciting). And on and on. No wonder the child is completely dysregulated. That's a lot for a small boy to handle.
So here's what I've done.
First of all, I quickly gave him a substitute to bite. Because think about it - oral input is the most primitive source of comfort and self-regulation we've got. Consider breast-feeding, sucking on a pacifier or a thumb. Many adults use food or cigarettes to satisfy that need. If we say, "Stop biting" but give the child nothing to substitute with, we are probably causing him more discomfort and then what's going to happen? Probably more biting.
I have a collection of oral motor tools that are safe and durable, and I offered Lyle an assortment. He took to one of them. I encouraged him to get all the oral input he wanted with that - while we read stories, when he watched a video, or when he was starting to experience heightened emotions. It helped. Forty-eight hours later he isn't biting anything else and isn't even using the tool much.
Second, I worked extra hard with him to identify what he was feeling. When he began to bite his shirt or shout, I slowed him down and asked, "What are you feeling right now?", helping him to differentiate between excitement and nervousness so that we could identify other ways to deal with those feelings. This worked very well. Tuesday afternoon I took the boys over to Starbucks for hot cocoa in the afternoon. Lyle was starting to get really wired, and I raised my voice to get his attention before he bumped into someone. He immediately bit his shirt - but then stopped and said to me, "I was surprised because you spoke sharply to me." He then climbed on my lap and allowed me to comfort him and explain why I spoke sharply. This self-awareness led to an immediate decrease in the undesirable behaviors in that environment.
Third, I slowed down his world as much as I could. I started to speak slower and more quietly to him, and kept our schedule as calm as possible. I made an extra effort to sit down and focus on pretend playing with him more often, which always gives us more opportunities to connect emotionally and play out difficult situations.
Fourth, I made life more predictable. I drew a calendar of the next few weeks for the kids. On each day, I drew simple pictures to identify Lyle's school days, days with the nanny, when exactly the parties are, when we go to California, etc. When life is busy and routines change all of a sudden, many kids (and probably adults) need some extra predictability and external organization. Both of the boys are checking their calendar multiple times a day; it's posted on the refrigerator.
This is an exciting time of year. That's as it should be. It's fun to dance in the kitchen to Frosty the Snowman, treat the kids to some holiday fun, and enjoy the season.
But for kids who are not so sure yet about how to express their feelings, 'tis also the season for some extra support.
Tuesday, December 11, 2007
Ransom Notes
Have you all heard this flap over the NYU Child Study Center's "Ransom Notes"?
Unbelievable.
I haven't been this mad in a looong time.
There's a wonderful post MOM-Not Otherwise Specified has written about it - it's listed over there on the right under "Read these great posts", and now Susan Etlinger has tackled it in her eloquent way on Momformation - read it here.
Don't miss it, folks.
And if you have an opinion, let them know.
I sure did.
Grrrr.
Unbelievable.
I haven't been this mad in a looong time.
There's a wonderful post MOM-Not Otherwise Specified has written about it - it's listed over there on the right under "Read these great posts", and now Susan Etlinger has tackled it in her eloquent way on Momformation - read it here.
Don't miss it, folks.
And if you have an opinion, let them know.
I sure did.
Grrrr.
Saturday, December 1, 2007
Date Night
After a long day yesterday - one that began when I stepped out into the dark, frigid morning at 5:30 to work out and continued through a full day of clients, one of those days when every break between clients involved a scheduled call - the best part of my day arrived. Date Night!No, Matt and I didn't go out. In fact, I stayed at work. Matt and the boys had dinner, played games, and watched a video together back at the ranch.
Lorell (good friend, very talented colleague, and faithful Wonderwheel reader) and I hosted the first-ever Date Night at the clinic last night. This was an opportunity for the parents of our clients to drop their kids off and go out for about two and a half hours. For only $5 per family (just enough to cover the cost of the food), we did art projects, fed them pizza (we made a gluten-free casein-free one for the kids on that special diet, and ordered pizzas for the rest of us), showed a couple of videos, and generally let them run around and have fun. The mood was festive - they all love coming to our clinic during the week, and coming at night (and some of them in their pj's!) was a huge, exciting adventure. I wish I could show you the photos of these super stars from last night - so cute!
We took 10 kids (about half clients, half their siblings) and there were 7 adults volunteering our time. At times, we were really grateful to have that many adults! The children ranged in age from 5 months to 7 years old. As you might imagine, so many parents were interested that we have most of the 10 spots filled for the next one - and we haven't even set the date yet.
If you don't have a child with significant special needs, you may not realize what an enormous gap this would fill. While so many of us complain that it's difficult to find a great babysitter we can trust, and often impossible to afford the $12-15 hourly rates, parents with typically developing kids have got it easy. Imagine the difficulty involved in finding someone you can trust to care for a child with little to no language, a special diet, unusual sleep habits, and behavior that is often confusing for those who don't know him/her. Think about if your child had idiosyncratic communication habits and you knew what he wanted only by reading the most subtle cues - and not meeting his needs would result in a tantrum of massive proportions. Would you easily leave him to go out for a fun dinner with your partner? Now imagine that you pay an enormous sum out of pocket every month to cover therapies. Would you be able to rationalize spending the money on a sitter and that dinner or movie? I wouldn't. And neither can most of our clients' parents. Those without family support nearby reported that they hadn't been out together in a very long time. Some weren't even sure what they could do - we went so far as to suggest a great local restaurant and talked them through how it would work.
And yet. These parents are under more strain than anyone can imagine. Divorce rates are said to be higher among parents whose children have autism than in the rest of the population. They need a break, some fun, and time to connect with friends or their spouse - and they need it yesterday. Or maybe last year.
This is a win-win situation. We adults truly had a wonderful time with the kids. The children had a blast - our 7-year old (who walked in and said, "I'm ready to PAR-TAAAYY!") declared at the end, "This was the best party in the whole world!" The parents had a chance to catch their breath and reconnect, and all of them thanked us with tears in their eyes.
It was an incredibly meaningful evening. One of the best events in my career.
This morning we're planning the next one.
Monday, October 22, 2007
Transformation
The little blond boy and I walked together down the stairs of my office building in Bucktown. Step, wait, step, stop. He is tall for his age, and thin. He wears round glasses, giving him a look of intelligence. Look up at the ceiling, glance towards the window, hoping to get a glimpse of an airplane passing by. He is intelligent. Though he doesn't speak more than a few words, I know beyond the shadow of a doubt that this child is taking everything in. Step, step, wait, step, stop. There's nothing speedy about this process, nor should there be. Due to developmental delays, this child has a significant motor planning challenge, and although his movement is greatly improved and he can even run (on firm ground) when he wants to, there is no hurry to get downstairs and out to the car.From around the corner of the hallway rushed a muscular, nice-looking man in his 30s. Given his helmet, cycling garb, speed, and perfectly-wrapped mailing envelope, I took him to be a bike messenger. "Let's move over, buddy," I said to the child, helping him move closer to the railing. Looking up at the man, I smiled and said, "We take our time."
The man slowed his pace, saying, "That's okay." He followed our choppy walk down the next flight of stairs, watching this child without a trace of pity. Without gawking curiosity. His uncommonly steady gaze was one of unfolding respect and understanding. At the bottom of the stairs, he held the door for us. He saw the child's caregiver approaching and asked, "Are you coming in here?" and then stepped back to let her in. I don't know how long he stood by. Had he moved on by the time the child had dropped to the ground, crying in frustration and pinching us because it was time for him to get into the car and he hadn't spent enough time gazing at the sky? I don't know.
All I know is that this child touched that man somehow today. I wondered if there was a child with special needs in the man's family or among his friends. Or was it simply that he was able to respect the effort it takes some of us to walk down the stairs when others are able to scurry down quickly and pedal off onto city streets, relying on rapid decision-making and perfect motor coordination to survive in the urban traffic?
I respect that man greatly for slowing his pace to match the little boy's, and to offer us assistance in such a positive manner. But my intuition is that the man received more from those few minutes than either the boy or I did. I believe that, in some way, the man was transformed by whatever came over him when he made the decision to walk down the stairs with us instead of ahead of us.
*****
I had the enormous good fortune of viewing the documentary "Autism: The Musical" last Thursday night. This description summarizes it well:
The film follows [5] children over the course of six months, as they create, prepare and then perform a live musical play on stage. Led by an intrepid acting coach who is herself the mother of an autistic child, this team of children defies their diagnosis. As it follows their journey, the audience not only better understands the nature of what autism is, but celebrates the joyful spirit of each child.At this point, "Autism: The Musical" is touring a very small number of cities in the United States and is in each city for only 3 days. If I had gone on Tuesday night, I would have made an attempt to go all three nights, bringing more people with me each time. It's quite possible that I would have completely run out of Kleenex, however. The film is beautiful, honest, and inspiring. I began to dream and scheme of bigger and better things that I could do professionally for families and children with autism immediately. (More on that later.) If you happen to be reading this from San Francisco, it's playing there this week; it will also be in Boston in a couple of weeks. The website has more information.
It would be difficult to say what I loved best about this film, but one of the most joyful parts for me was to watch the transformation of one of the mothers; this mother described in grim detail the way she initially felt about her daughter's diagnosis. How her hopes for her daughter's future were wrapped up in her desire for her child to fit in and to be like everyone else, and how painful her lack of acceptance of who her daughter really was became for both of them. To see this woman let go, relaxing and enjoying her daughter as a teenager - joking and dancing around the house with her - was as heartwarming to me as anything else in the movie. She talked about the fact that having her daughter in her life transformed her into a completely different person; what she was saying was, it changed her for the better.
****
I can't speak for a parent of a child with autism, but I too have been changed for the better by the children I work with. My whole notion of success is completely different. I am able to grasp at what might appear to be a fleeting, abstract change in a child's behavior and see it as an enormous success, something tangible, a solid rung on the elusive developmental ladder. I celebrate the gestures more than the words, the process more than the product, and the social friendships more than the academics. I keep going back for the hugs, the small steps, the joy in the children's faces. For the warm, loving relationships that the experts like to tell us are impossible for children with autism, but that my colleagues and I are able to cultivate with every single child with this diagnosis.
And for watching a strong, healthy man instantly humbled by a quiet young boy making his way down the stairs on a Monday morning.
Subscribe to:
Posts (Atom)
