After a long absence, I finally figured out how to get back into my blogspot account to be able to generate more blog posts.
I'm back in the classroom now, with three students diagnosed on the spectrum. What a wide range of abilities and interests they have. More info to come over the holidays.
Sunday, December 14, 2014
Research ~ In the DARK AGES...
My not-so-voluntary career as a researcher started 22 years ago when Dylan was born and diagnosed with Tuberous Sclerosis. The internet wasn't readily available to the general public, so research meant the library! In Phoenix, that would've been the old library at Central & McDowell (what is currently part of the Phoenix Art Museum).
All my life, I'd preferred to be outside in the great outdoors , so even though I was capable of efficient reading, it wasn't what I chose to do. As a consequence, I hadn't spent much time inside a library. I read what I had to read (textbooks) to get through school, but I much preferred 'doing' to reading. The old Phoenix Library still had the card catalog system in place and I was looking for anything related to tuberous sclerosis. There wasn't a lot of information out there in the mid 1990's and what was available was old and terribly depressing!
The trip wasn't for naught because I came across a book written by Temple Grandin that my aunt had recommended. Travelling through the catacombs with a SID baby was enough to send us both out of the place screaming, but we DID make it out of the library, and with a copy of Temple's Thinking in Pictures, to boot!
Self talk: Don't give up!! Perseverance. Courage. Determination. No other option.
We knew early on that Dylan had sensory processing issues. His first OT, Phyllis, started a brushing and deep pressure regimen with him in therapy. She taught me to do it and told me to do it right after his bath and just before bed. The first time I tried it, he fell asleep as I was doing it and slept for four hours straight!
As I was reading more about Temple Grandin, I read about a 'squeeze machine' that she developed for her own personal use. How cool that she could do it herself! There's one at the Children's Center for Neurodevelopmental Studies in Glendale. When I read about it, it made total sense to me, especially because I'd seen first hand how Dylan responded to the deep pressure and brushing. It still amazes me that those methods aren't used more often across settings: therapy, home, school.
I had lots more to do, to learn, to see. We would see Phyllis, Dylan's OT, again in the school setting and, yet again as a 1:1 therapist. The year she worked for our local school district, she shared a booklet with me titled How Does Your Engine Run. This added another piece to the sensory puzzle. Learning the importance of self regulation for children with sensory processing issues and understanding the self piece of that really opened up new opportunities for Dylan and brought a sense of peace to our home life. We looked at what calmed him ~ the silky side of his heavy blankie, and talked to him about crawling under it himself when he was feeling out of control. Initially, we would take him to it when he was out of control, but eventually, we found that he would seek it out himself.
As a side note, Ms. Grandin spent part of her young life in Arizona when she was 'living the life' from the inside out. Because she's so articulate and able to describe what's going on with her brain and her body as it relates to autism, and because she's willing to SHARE what she knows, her contributions to the field are priceless. If you'd like to know a little more about her life, Claire Danes portrays Temple in Temple Grandin.
We still have a long way to go to facilitate positive life experiences for children on the spectrum ~ to help them to become valued, participating members of society. And frankly, the same goes for children with special needs in general. In the past 30 years, many good people ~ often anonymous, unsung heros ~ have been thinking outside the box to help those with what I call "diffabilities". They meet the criteria that Temple Grandin lays out to describe the true meaning of life, "...the true meaning of life is if you do something that makes real change for somebody else or something, that's what really matters." They were and are making a real difference.
I can't help but think how different the world would be if Temple had chosen political science instead of animal science.
~ D
All my life, I'd preferred to be outside in the great outdoors , so even though I was capable of efficient reading, it wasn't what I chose to do. As a consequence, I hadn't spent much time inside a library. I read what I had to read (textbooks) to get through school, but I much preferred 'doing' to reading. The old Phoenix Library still had the card catalog system in place and I was looking for anything related to tuberous sclerosis. There wasn't a lot of information out there in the mid 1990's and what was available was old and terribly depressing!
The trip wasn't for naught because I came across a book written by Temple Grandin that my aunt had recommended. Travelling through the catacombs with a SID baby was enough to send us both out of the place screaming, but we DID make it out of the library, and with a copy of Temple's Thinking in Pictures, to boot!
Self talk: Don't give up!! Perseverance. Courage. Determination. No other option.
We knew early on that Dylan had sensory processing issues. His first OT, Phyllis, started a brushing and deep pressure regimen with him in therapy. She taught me to do it and told me to do it right after his bath and just before bed. The first time I tried it, he fell asleep as I was doing it and slept for four hours straight!
As I was reading more about Temple Grandin, I read about a 'squeeze machine' that she developed for her own personal use. How cool that she could do it herself! There's one at the Children's Center for Neurodevelopmental Studies in Glendale. When I read about it, it made total sense to me, especially because I'd seen first hand how Dylan responded to the deep pressure and brushing. It still amazes me that those methods aren't used more often across settings: therapy, home, school.
I had lots more to do, to learn, to see. We would see Phyllis, Dylan's OT, again in the school setting and, yet again as a 1:1 therapist. The year she worked for our local school district, she shared a booklet with me titled How Does Your Engine Run. This added another piece to the sensory puzzle. Learning the importance of self regulation for children with sensory processing issues and understanding the self piece of that really opened up new opportunities for Dylan and brought a sense of peace to our home life. We looked at what calmed him ~ the silky side of his heavy blankie, and talked to him about crawling under it himself when he was feeling out of control. Initially, we would take him to it when he was out of control, but eventually, we found that he would seek it out himself.
As a side note, Ms. Grandin spent part of her young life in Arizona when she was 'living the life' from the inside out. Because she's so articulate and able to describe what's going on with her brain and her body as it relates to autism, and because she's willing to SHARE what she knows, her contributions to the field are priceless. If you'd like to know a little more about her life, Claire Danes portrays Temple in Temple Grandin.
We still have a long way to go to facilitate positive life experiences for children on the spectrum ~ to help them to become valued, participating members of society. And frankly, the same goes for children with special needs in general. In the past 30 years, many good people ~ often anonymous, unsung heros ~ have been thinking outside the box to help those with what I call "diffabilities". They meet the criteria that Temple Grandin lays out to describe the true meaning of life, "...the true meaning of life is if you do something that makes real change for somebody else or something, that's what really matters." They were and are making a real difference.
I can't help but think how different the world would be if Temple had chosen political science instead of animal science.
~ D
Monday, April 15, 2013
Change is Difficult
This year has been a year of changes, and you know how difficult change is for kids on the spectrum.
For the younger kids, social stories can be a great way to get them ready for change well in advance of it actually happening. I'm ever so grateful that I found out about them and was able to use them effectively with Dylan when he was little.
But now that he's older and has had the benefit of formal written and illustrated social stories over the years, when I want to introduce something new to him, I say to him, "OK, Dylan, it's time for a story." He'll usually say, "OK, mom, what is it." It's almost as if this part of the story is scripted, and by now, it's almost a joke between the two of us.
Our conversation this afternoon started out just like that, joke and all. Dylan's habilitation provider he's had for almost five years resigned last week. I had to break the news to Dylan. It's been a real 'hand-wringer' to try to figure out just how I could do it and at the same time minimize his angst. By this afternoon, I had to tell him.
We had an interview with a new provider set up for 4:30pm, so time was of the essence. This is how it went:
MOM: OK, Dylan, it's time for a story.
DYLAN: OK, Mom, what is it?
MOM: So, when we get home, we're going to meet a new friend for you.
DYLAN: But mom, I miss Patrick.
MOM: Yes, I know you miss Patrick, but he's coming to see you on Thursday. We're going to meet Tyler. Tyler will be able to come see you on the days that Patrick has other stuff to do.
DYLAN: Oh, mom. (rubs his head) I miss Patrick.
MOM: I know, but you need another friend, and Tyler is really nice.
This got us over the hump, and Dylan was receptive to talking to Tyler when we got home. The interview went well, and after it was over, Dylan told me that he thought Tyler was OK.
Honestly, I was feeling kind of guilty for not telling Dylan that Patrick resigned, but then I got to thinking that we might actually see Patrick, on occasion, so it wasn't like he was gone for good. Hopefully, this will make the transition easier for everyone involved.
This is a point that service providers, especially in cases where they've been with clients for a very long time, might take note: if you're thinking of making a change, be kind to your clients (and yourself) and ease out of it. Transition with the person who will be taking your place.
A big thanks to Patrick whose been a big part of our family for the past five years. Dylan couldn't have a better friend.
For the younger kids, social stories can be a great way to get them ready for change well in advance of it actually happening. I'm ever so grateful that I found out about them and was able to use them effectively with Dylan when he was little.
But now that he's older and has had the benefit of formal written and illustrated social stories over the years, when I want to introduce something new to him, I say to him, "OK, Dylan, it's time for a story." He'll usually say, "OK, mom, what is it." It's almost as if this part of the story is scripted, and by now, it's almost a joke between the two of us.
Our conversation this afternoon started out just like that, joke and all. Dylan's habilitation provider he's had for almost five years resigned last week. I had to break the news to Dylan. It's been a real 'hand-wringer' to try to figure out just how I could do it and at the same time minimize his angst. By this afternoon, I had to tell him.
We had an interview with a new provider set up for 4:30pm, so time was of the essence. This is how it went:
MOM: OK, Dylan, it's time for a story.
DYLAN: OK, Mom, what is it?
MOM: So, when we get home, we're going to meet a new friend for you.
DYLAN: But mom, I miss Patrick.
MOM: Yes, I know you miss Patrick, but he's coming to see you on Thursday. We're going to meet Tyler. Tyler will be able to come see you on the days that Patrick has other stuff to do.
DYLAN: Oh, mom. (rubs his head) I miss Patrick.
MOM: I know, but you need another friend, and Tyler is really nice.
This got us over the hump, and Dylan was receptive to talking to Tyler when we got home. The interview went well, and after it was over, Dylan told me that he thought Tyler was OK.
Honestly, I was feeling kind of guilty for not telling Dylan that Patrick resigned, but then I got to thinking that we might actually see Patrick, on occasion, so it wasn't like he was gone for good. Hopefully, this will make the transition easier for everyone involved.
This is a point that service providers, especially in cases where they've been with clients for a very long time, might take note: if you're thinking of making a change, be kind to your clients (and yourself) and ease out of it. Transition with the person who will be taking your place.
A big thanks to Patrick whose been a big part of our family for the past five years. Dylan couldn't have a better friend.
Tuesday, October 30, 2012
Dangerous!
This morning I'm working on a social story for a child who 'knee walks'. She folds her feet behind her, holds them with her hands, and walks on her knees. This might be OK in the ball pit at McDonald's where a frontal wipe-out would be minimized, but on the floor, at home or school or church, could be really dangerous and painful!
Thinking about other dangerous situations that elementary aged children might face, I begin my list with the "Do Not Walk" sign that you'd see at an intersection. This particular child knows that crossing the street when the sign is on is dangerous. Add: looking both ways before crossing the street; riding a bicycle without a helmet; jumping out of the swing at the park; running with untied shoe laces. Coming up with a list that is customized to include activities that commonly occur in the child's life helps to link many potentially unsafe activities into one category ~ what is dangerous.
That will probably be the title of the book ~ Dangerous! The story will start out by saying that Kelly* likes to walk on her knees. It will go on to explain that feet are for walking on, and knees are for bending as part of the walking motion that helps move us forward. The next couple of pages will show what can happen when Kelly walks on her knees. She can fall forward and hit her nose and face on the floor ~ OUCH! She might accidentally fall into someone else and cause them to fall, too ~ double OUCH!. Then I'll add pictures or line drawings of the other dangerous situations specific to this child's routines with simple sentences that tell what's going on and why it's unsafe.
Including several activities that are unsafe in the book on knee walking helps the child create a category related to danger and it adds several dangerous activities to this category. As more, different, unsafe behaviors emerge, parents and/or teachers will be able to draw on the activities already in the danger category to directly connect the known with the unknown. Typical kids most often make these connections with little effort. They're able to process IF/THEN scenarios. But for someone on the spectrum, who can't automatically make the connections, this kind of direct instruction is necessary.
Every time I write a story, I think of Temple Grandin's book Thinking in Pictures and how that title applies to the effectiveness of social stories for children. Thank you, Temple!
Make it a great day.
~ D
* not her real name, of course!
Thinking about other dangerous situations that elementary aged children might face, I begin my list with the "Do Not Walk" sign that you'd see at an intersection. This particular child knows that crossing the street when the sign is on is dangerous. Add: looking both ways before crossing the street; riding a bicycle without a helmet; jumping out of the swing at the park; running with untied shoe laces. Coming up with a list that is customized to include activities that commonly occur in the child's life helps to link many potentially unsafe activities into one category ~ what is dangerous.
That will probably be the title of the book ~ Dangerous! The story will start out by saying that Kelly* likes to walk on her knees. It will go on to explain that feet are for walking on, and knees are for bending as part of the walking motion that helps move us forward. The next couple of pages will show what can happen when Kelly walks on her knees. She can fall forward and hit her nose and face on the floor ~ OUCH! She might accidentally fall into someone else and cause them to fall, too ~ double OUCH!. Then I'll add pictures or line drawings of the other dangerous situations specific to this child's routines with simple sentences that tell what's going on and why it's unsafe.
Including several activities that are unsafe in the book on knee walking helps the child create a category related to danger and it adds several dangerous activities to this category. As more, different, unsafe behaviors emerge, parents and/or teachers will be able to draw on the activities already in the danger category to directly connect the known with the unknown. Typical kids most often make these connections with little effort. They're able to process IF/THEN scenarios. But for someone on the spectrum, who can't automatically make the connections, this kind of direct instruction is necessary.
Every time I write a story, I think of Temple Grandin's book Thinking in Pictures and how that title applies to the effectiveness of social stories for children. Thank you, Temple!
Make it a great day.
~ D
* not her real name, of course!
Saturday, October 27, 2012
Oblivious!
Well, that's a broad title to give an article about the many facets of autism...oblivious! To typical people, autistics might seem to be oblivious to many things, and sometimes they are, but other times they're just taking in information in ways unfamiliar to us. In fact, I'm still not sure how it happens, but I am sure that it happens differently for each one.
Dylan is like that. He uses his peripheral vision to input visual stimuli. He will not, voluntarily, look you in the eye. When prompted to do so, his body shifts like a crab ~ a bit sideways ~ as he attempts eye to eye contact. This is almost always the case, but not always!
His behavior changes around girls! Doesn't that just figure? And he doesn't discriminate for or against any girls ~ regardless of age or color ~ he likes girls. Whether you're 3 or 33 or 93, if you're a girl, it's likely that at some point, you will draw his attention. It's the same for color: he makes no distinction among girls, whether they're African-American, Asian, Hispanic, caucasian or somewhere in between ~ you're just a girl to him. And he will attempt to look at you eye to eye and to engage you in conversation.
Thus the title of this post: oblivious.
As the responsible adult, I cannot be oblivious to the sometimes obvious discomfort Dylan causes when he talks to little girls. He's over 6' tall, and despite the fact that he makes no distinction based on age, the little girls and their parents very often do. As a result, his behavior though never inappropriate, is troublesome. So, I'm thinking that a new Social Story might be in order.
This time, though, I decided to use real pictures instead of line drawings. I'm no artist. Trying to draw the developmental nuances among really young girls, teenage girls and older women was just beyond my simple line-drawing expertise! I started out with pictures of females who were familiar to Dylan. A friend's 5-year-old daughter, a pre-teen we knew from baseball practice, my friend who's in her late 30's, our neighbor who's in her 50's, and my aunt who's in her 70's. A pretty good range of female subjects to represent different age ranges.
So, I started the story out by saying that Dylan likes to talk to girls. I described the situations in which he might meet girls he wanted to talk to: school, church, baseball, zoo, bus, restaurant, etc. Then the story told him that we talk to different kinds of girls in different ways. I went through the rest of the 'book' using the pictures and descriptions of the different kinds of girls and then how to talk to them. The little girls should always be with their mom and/or dad. The pre-teens might talk back, and they might not. If they did, he was free to talk to them nicely; if they didn't, he needed to understand that they just didn't feel like talking and leave them alone. This went on up through the rest of the 'girls'. At the end of the book, I reminded him that girls at different ages should be talked to in different ways.
He was and still is oblivious to the concept of age. For anybody!!
I tried describing girls by how tall they were. I tried describing them by what grade they were in (this was incorporated as a question he could ask them when initiating the conversation) or where they worked. I used pictures of complete strangers taken from the internet and just taped the new pictures over top of the original pictures in the original book, so Dylan would have a library of pictures for each age range.
But none of this worked! He would still go up to little girls and talk to them like he was their age! When friends came to visit, he sat right next to our friend, Debbie, and fussed over her the whole evening. She's in her 50's! He did the same thing when his grandma came to visit, and she's 85 (though, to be honest, I don't think he knows that she's his grandma because he's only seen her a few times in his life). This is a conundrum.
He still has the Social Stories book, and we look at it every now and then, but I'm convinced that his brain just doesn't register the developmental differences that indicate age. For the time being, I'm using sign language for "NO" along with a head shake when we're out in public and he's walking a fine line with younger girls. I don't want to verbally scold him in front of strangers. He gets upset and does the 'tongue pop' thing, but it is an effective strategy. Having said that, I won't be with him forever, so the problem solving and research continue!
Perseverance.
~ D
Dylan is like that. He uses his peripheral vision to input visual stimuli. He will not, voluntarily, look you in the eye. When prompted to do so, his body shifts like a crab ~ a bit sideways ~ as he attempts eye to eye contact. This is almost always the case, but not always!
His behavior changes around girls! Doesn't that just figure? And he doesn't discriminate for or against any girls ~ regardless of age or color ~ he likes girls. Whether you're 3 or 33 or 93, if you're a girl, it's likely that at some point, you will draw his attention. It's the same for color: he makes no distinction among girls, whether they're African-American, Asian, Hispanic, caucasian or somewhere in between ~ you're just a girl to him. And he will attempt to look at you eye to eye and to engage you in conversation.
Thus the title of this post: oblivious.
As the responsible adult, I cannot be oblivious to the sometimes obvious discomfort Dylan causes when he talks to little girls. He's over 6' tall, and despite the fact that he makes no distinction based on age, the little girls and their parents very often do. As a result, his behavior though never inappropriate, is troublesome. So, I'm thinking that a new Social Story might be in order.
This time, though, I decided to use real pictures instead of line drawings. I'm no artist. Trying to draw the developmental nuances among really young girls, teenage girls and older women was just beyond my simple line-drawing expertise! I started out with pictures of females who were familiar to Dylan. A friend's 5-year-old daughter, a pre-teen we knew from baseball practice, my friend who's in her late 30's, our neighbor who's in her 50's, and my aunt who's in her 70's. A pretty good range of female subjects to represent different age ranges.
So, I started the story out by saying that Dylan likes to talk to girls. I described the situations in which he might meet girls he wanted to talk to: school, church, baseball, zoo, bus, restaurant, etc. Then the story told him that we talk to different kinds of girls in different ways. I went through the rest of the 'book' using the pictures and descriptions of the different kinds of girls and then how to talk to them. The little girls should always be with their mom and/or dad. The pre-teens might talk back, and they might not. If they did, he was free to talk to them nicely; if they didn't, he needed to understand that they just didn't feel like talking and leave them alone. This went on up through the rest of the 'girls'. At the end of the book, I reminded him that girls at different ages should be talked to in different ways.
He was and still is oblivious to the concept of age. For anybody!!
I tried describing girls by how tall they were. I tried describing them by what grade they were in (this was incorporated as a question he could ask them when initiating the conversation) or where they worked. I used pictures of complete strangers taken from the internet and just taped the new pictures over top of the original pictures in the original book, so Dylan would have a library of pictures for each age range.
But none of this worked! He would still go up to little girls and talk to them like he was their age! When friends came to visit, he sat right next to our friend, Debbie, and fussed over her the whole evening. She's in her 50's! He did the same thing when his grandma came to visit, and she's 85 (though, to be honest, I don't think he knows that she's his grandma because he's only seen her a few times in his life). This is a conundrum.
He still has the Social Stories book, and we look at it every now and then, but I'm convinced that his brain just doesn't register the developmental differences that indicate age. For the time being, I'm using sign language for "NO" along with a head shake when we're out in public and he's walking a fine line with younger girls. I don't want to verbally scold him in front of strangers. He gets upset and does the 'tongue pop' thing, but it is an effective strategy. Having said that, I won't be with him forever, so the problem solving and research continue!
Perseverance.
~ D
Hearts and Minds ~ It's How You Use Them That Counts
What do you say to a school bus driver who asks if your 3-year-old child is autistic?
She was smiling when she asked. Nobody else ~ doctors, teachers, therapists ~ had ever suggested autism. He already had a diagnosis, Tuberous Sclerosis. So, that's what I told her. Somewhere in the file cabinet in my brain I filed away 'autism'. That file was the 'elephant in my brain'. I added information to it, but I didn't dare take it out and open it up. I couldn't examine it up close because that would be admitting to myself that I actually thought that bus driver was on to something. And she wasn't the only one.
When Dylan was in second grade, he got to sit in the back of his classroom and draw pictures for most of the day. At that point in time, he perseverated on birthdays. So, he drew many pictures of birthday cakes. Creative, yes; beautiful, YES, but not so academically challenging. Towards the end of the year, we wound up in mediation with the school district. The result was to include preferential seating in his IEP (among other things), so the teacher could be close and keep him on task. This was early April. By the middle of May, he was still sitting in the back of the classroom with the other special education students. WOW!
By now, he was almost seven and still almost non-verbal, though he was pretty good with the sign language we'd learned together. But it was time to pull out that file again, to look at and process everything we'd done with Dylan for the past six years. What worked, what didn't, and where we'd go from here. Now, I had to look at autism. I found SARRC, the Southwest Autism Research and Resource Center and signed up to take a class there. Baby steps. The facilitator just happened to be the classroom aid attached to a couple of the other special education students in Dylan's class. She asked me how in the world I'd dealt with Dylan's autism for all these years without help. Double WOW! I'd just been following his lead and doing what he showed me he needed help with, but now, it really was time to get some professional evaluations to help figure out where we were going.
I knew where we'd come from, and thankfully, over the years, we'd had a few therapists who were 'out of the box' thinkers and excellent practitioners who looked at the child rather than the diagnosis. One particular Occupational Therapist comes to mind, Phyllis. Not only was she really good with Dylan and the rest of her "kids", she knew about sensory integration dysfunction (SID).
I didn't know it then, but SID was common in kids on the spectrum. When she'd see Dylan, the first order of business was some deep pressure into his joints. This process started from the top down, literally. Then came the 'brushing', using a rectangular, white plastic brush just like the ones doctors use to scrub their hands prior to surgery. I've saved one of those brushes to remind me of just how far we've come, and how much progress Dylan has made in his life.
This tactile pressure calmed him and allowed him to focus on the work he'd be doing in therapy ~ which meant he got a lot more out of the therapy session. Dylan responded so beautifully to this protocol, I asked if I could learn to do it to help him relax before bedtime.
I was a willing student, and Phyllis was a willing teacher. Dylan was the beneficiary! I've often wondered if his early school years would've been more productive if the OT's at school had known about and used deep pressure and brushing.
Let's go back a few years to put the results of the deep pressure/brushing into context. From the day he was born, he never SLEPT like other babies. In fact, he hardly slept at all, which meant I hardly slept at all. Talk about sticking your finger in a light socket ~ or feeling like doing it, anyway. That's how most days felt for me! Can't imagine what was going on in that little brain to make it stay "on" all the time. To be able to use the deep pressure and brushing to calm him after bath time and just before bed was a Godsend. This was an every night routine that we both looked forward to ~ we both got to SLEEP afterwards!
In writing this, I think of the Zombie books Dane is reading right now. That would've totally been what our house looked like back then. Zombies!
A little more sleep meant a little more study time for me, and lots of smart people were working hard to come up with strategies to help kids like Dylan. The gratitude I feel to these early advocates is immeasurable, especially Temple Grandin, whose name is now synonymous with autism, and Alfred Tomatis. Temple figured out that she needed 'deep pressure' and devised a machine to help her out with that, and Tomatis developed a method of auditory integration training that helped Dylan move from single word expression (cookie) to a 14-word-sentence over the summer after second grade! More on that and another social story dilemma later!
To all of Dylan's 'out of the box' therapists ~ THANK YOU!
~ D
She was smiling when she asked. Nobody else ~ doctors, teachers, therapists ~ had ever suggested autism. He already had a diagnosis, Tuberous Sclerosis. So, that's what I told her. Somewhere in the file cabinet in my brain I filed away 'autism'. That file was the 'elephant in my brain'. I added information to it, but I didn't dare take it out and open it up. I couldn't examine it up close because that would be admitting to myself that I actually thought that bus driver was on to something. And she wasn't the only one.
When Dylan was in second grade, he got to sit in the back of his classroom and draw pictures for most of the day. At that point in time, he perseverated on birthdays. So, he drew many pictures of birthday cakes. Creative, yes; beautiful, YES, but not so academically challenging. Towards the end of the year, we wound up in mediation with the school district. The result was to include preferential seating in his IEP (among other things), so the teacher could be close and keep him on task. This was early April. By the middle of May, he was still sitting in the back of the classroom with the other special education students. WOW!
By now, he was almost seven and still almost non-verbal, though he was pretty good with the sign language we'd learned together. But it was time to pull out that file again, to look at and process everything we'd done with Dylan for the past six years. What worked, what didn't, and where we'd go from here. Now, I had to look at autism. I found SARRC, the Southwest Autism Research and Resource Center and signed up to take a class there. Baby steps. The facilitator just happened to be the classroom aid attached to a couple of the other special education students in Dylan's class. She asked me how in the world I'd dealt with Dylan's autism for all these years without help. Double WOW! I'd just been following his lead and doing what he showed me he needed help with, but now, it really was time to get some professional evaluations to help figure out where we were going.
I knew where we'd come from, and thankfully, over the years, we'd had a few therapists who were 'out of the box' thinkers and excellent practitioners who looked at the child rather than the diagnosis. One particular Occupational Therapist comes to mind, Phyllis. Not only was she really good with Dylan and the rest of her "kids", she knew about sensory integration dysfunction (SID).
I didn't know it then, but SID was common in kids on the spectrum. When she'd see Dylan, the first order of business was some deep pressure into his joints. This process started from the top down, literally. Then came the 'brushing', using a rectangular, white plastic brush just like the ones doctors use to scrub their hands prior to surgery. I've saved one of those brushes to remind me of just how far we've come, and how much progress Dylan has made in his life.
This tactile pressure calmed him and allowed him to focus on the work he'd be doing in therapy ~ which meant he got a lot more out of the therapy session. Dylan responded so beautifully to this protocol, I asked if I could learn to do it to help him relax before bedtime.
I was a willing student, and Phyllis was a willing teacher. Dylan was the beneficiary! I've often wondered if his early school years would've been more productive if the OT's at school had known about and used deep pressure and brushing.
Let's go back a few years to put the results of the deep pressure/brushing into context. From the day he was born, he never SLEPT like other babies. In fact, he hardly slept at all, which meant I hardly slept at all. Talk about sticking your finger in a light socket ~ or feeling like doing it, anyway. That's how most days felt for me! Can't imagine what was going on in that little brain to make it stay "on" all the time. To be able to use the deep pressure and brushing to calm him after bath time and just before bed was a Godsend. This was an every night routine that we both looked forward to ~ we both got to SLEEP afterwards!
In writing this, I think of the Zombie books Dane is reading right now. That would've totally been what our house looked like back then. Zombies!
A little more sleep meant a little more study time for me, and lots of smart people were working hard to come up with strategies to help kids like Dylan. The gratitude I feel to these early advocates is immeasurable, especially Temple Grandin, whose name is now synonymous with autism, and Alfred Tomatis. Temple figured out that she needed 'deep pressure' and devised a machine to help her out with that, and Tomatis developed a method of auditory integration training that helped Dylan move from single word expression (cookie) to a 14-word-sentence over the summer after second grade! More on that and another social story dilemma later!
To all of Dylan's 'out of the box' therapists ~ THANK YOU!
~ D
Thursday, September 27, 2012
My First Social Story
So, let's fast forward 7 years. Dylan is now in the second grade in public school, and I was about to seize the opportunity to write my first Social Story.
I received a meeting notice in his backpack asking me to come to an IEP meeting regarding his lack of compliance in going to speech therapy.
You know I never miss an IEP meeting!
Seems the problem centered around Dylan's complete refusal to go to speech therapy. At first, when the therapist would come to get him, he would go with her. He'd walk most of the way there and then make a beeline for the playground. Later on, he would get very anxious when she walked into the classroom to get him and, finally, he just refused to go with her.
So, here we were in an IEP meeting to try to figure out Dylan's "non-compliance". As I was sitting there listening to his teacher and the therapist, I started to think 'outside the box'. I do this often. Can't help it. What were we missing? Something.
Knowing that autistic children often have sensory issues, I began to think about the trip from the classroom to the therapy office. What did Dylan hear, see, smell and feel on his way to therapy? Dylan was not usually a willfully, non-compliant child. So I asked if we could all take a walk to the therapy office. There were some deep sighs (no eye rolls or tongue popping), but I just ignored them.
We walked out of the classroom. Down the sidewalk. Past some bushes with nice smelling flowers. Turned left. Walked on the sidewalk some more. Under an overhang. Past the playground. Turned right to face the double doors going into the building with the therapy office.
WHOOSH! As soon as the doors opened, a huge whoosh of cold air escaped. It was enough to blow my hair. As we walked through the doors and closed them, I could hear the air conditioning unit just above our heads on the roof. I could also feel a slight vibration, too.
We walked on down the hall to the therapy office. When we walked through the door, it looked like a nice space, except for the flickering flourescent lights in the ceiling. I used this as an opportunity to educate the team on the possibility that flickering lights trigger seizures. I was met with blank stares, so I offered to copy the associated research and send it to school in Dylan's backpack the following day. Because Dylan was medicated for seizures, I asked for the lights to be fixed.
Then, I asked the team to go back out and walk through the doors with me again. Another opportunity to educate. I'd been reading about sensory integration dysfunction that Jean Ayres identified almost 20 years earlier.
We all stood outside the doors and I opened them to feel the rush of cold air. I asked the group to pretend to be Dylan. I reminded them about the discussions we'd had earlier about his near "freak outs" when the fire bell rang. Then, I introduced the concept of sensory integration dysfunction as a possible explanation. I asked them how they thought Dylan felt when that rush of cold air hit him. I suggested that his experience might be similar to a baby's startle response when you blow air in his face.
We went in and closed the doors. I asked everybody to be very quiet and then asked if they heard or felt anything. Thankfully, his classroom teacher pointed out the sound of the AC unit. I asked if she also felt the vibration. She said she hadn't noticed it until I'd mentioned it!
I explained that Dylan's sensory issues were primarily related to sound and touch, and asked if there was another way into the building. There was! We walked to the back door.
The rush of air was much less noticable, and there was no AC above our heads! Whooo, hooo! But, there was still a pair of double doors to get through, and I didn't know if he would associate these double doors with the 'bad' double doors.
So, here was the opportunity to put Carol Gray's social stories to use FOR REAL! Carol began using these stories in 1991, the year before Dylan was born, so with some practical experience and successes under her belt, I thought she was on to something and was determined to try it for myself.
My story was short, with child-like illustrations, in a picture book format that went through the whole process of getting from the classroom to the therapy room. Knowing he would be taking a new path to go in the back door of the building, I decided to write a second story showing and telling him what he'd see on this new path, too.
At the end of the second story, I planted a seed.
The seed was just an idea. An idea that, when he was ready to try the front door again, he could ask his speech therapist to go in the front door.
Within a month, he was going through the front door.
I was intrigued by the effectiveness of those social stories. I began to think about other situations I could address with a social story.
Who ever said learning had to take place in a formal, classroom setting? At this point, my "self-educating" was proving to be more than helpful for Dylan, I'd been able to share.
Another seed planted...
I received a meeting notice in his backpack asking me to come to an IEP meeting regarding his lack of compliance in going to speech therapy.
You know I never miss an IEP meeting!
Seems the problem centered around Dylan's complete refusal to go to speech therapy. At first, when the therapist would come to get him, he would go with her. He'd walk most of the way there and then make a beeline for the playground. Later on, he would get very anxious when she walked into the classroom to get him and, finally, he just refused to go with her.
So, here we were in an IEP meeting to try to figure out Dylan's "non-compliance". As I was sitting there listening to his teacher and the therapist, I started to think 'outside the box'. I do this often. Can't help it. What were we missing? Something.
Knowing that autistic children often have sensory issues, I began to think about the trip from the classroom to the therapy office. What did Dylan hear, see, smell and feel on his way to therapy? Dylan was not usually a willfully, non-compliant child. So I asked if we could all take a walk to the therapy office. There were some deep sighs (no eye rolls or tongue popping), but I just ignored them.
We walked out of the classroom. Down the sidewalk. Past some bushes with nice smelling flowers. Turned left. Walked on the sidewalk some more. Under an overhang. Past the playground. Turned right to face the double doors going into the building with the therapy office.
WHOOSH! As soon as the doors opened, a huge whoosh of cold air escaped. It was enough to blow my hair. As we walked through the doors and closed them, I could hear the air conditioning unit just above our heads on the roof. I could also feel a slight vibration, too.
We walked on down the hall to the therapy office. When we walked through the door, it looked like a nice space, except for the flickering flourescent lights in the ceiling. I used this as an opportunity to educate the team on the possibility that flickering lights trigger seizures. I was met with blank stares, so I offered to copy the associated research and send it to school in Dylan's backpack the following day. Because Dylan was medicated for seizures, I asked for the lights to be fixed.
Then, I asked the team to go back out and walk through the doors with me again. Another opportunity to educate. I'd been reading about sensory integration dysfunction that Jean Ayres identified almost 20 years earlier.
We all stood outside the doors and I opened them to feel the rush of cold air. I asked the group to pretend to be Dylan. I reminded them about the discussions we'd had earlier about his near "freak outs" when the fire bell rang. Then, I introduced the concept of sensory integration dysfunction as a possible explanation. I asked them how they thought Dylan felt when that rush of cold air hit him. I suggested that his experience might be similar to a baby's startle response when you blow air in his face.
We went in and closed the doors. I asked everybody to be very quiet and then asked if they heard or felt anything. Thankfully, his classroom teacher pointed out the sound of the AC unit. I asked if she also felt the vibration. She said she hadn't noticed it until I'd mentioned it!
I explained that Dylan's sensory issues were primarily related to sound and touch, and asked if there was another way into the building. There was! We walked to the back door.
The rush of air was much less noticable, and there was no AC above our heads! Whooo, hooo! But, there was still a pair of double doors to get through, and I didn't know if he would associate these double doors with the 'bad' double doors.
So, here was the opportunity to put Carol Gray's social stories to use FOR REAL! Carol began using these stories in 1991, the year before Dylan was born, so with some practical experience and successes under her belt, I thought she was on to something and was determined to try it for myself.
My story was short, with child-like illustrations, in a picture book format that went through the whole process of getting from the classroom to the therapy room. Knowing he would be taking a new path to go in the back door of the building, I decided to write a second story showing and telling him what he'd see on this new path, too.
At the end of the second story, I planted a seed.
The seed was just an idea. An idea that, when he was ready to try the front door again, he could ask his speech therapist to go in the front door.
Within a month, he was going through the front door.
I was intrigued by the effectiveness of those social stories. I began to think about other situations I could address with a social story.
Who ever said learning had to take place in a formal, classroom setting? At this point, my "self-educating" was proving to be more than helpful for Dylan, I'd been able to share.
Another seed planted...
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