As a person who has a high anxiety level, I understand how difficult it can be to navigate through each day with all of the feelings associated with anxiety: insecurity, fear, self-doubt, worry and stress. I imagine for children on the spectrum, this is multiplied greatly by the lack of coping experience.
I have experienced time and again how my stress and anxiety negatively affects my son. For example, if I'm rushing on a school morning and the kids are moving at their own pace, my anxiety level raises. I begin to get upset, raise my voice--even yell. Instead of calming myself, I've now created an atmosphere of anxiety that sets up a bad day for everyone. To help with this, I try to prepare the night before by packing lunches, setting out clothes, putting out cereal bowls, etc.
I think the key to reducing the stress is planning ahead. Last year, I would get Ben up early and do sensory exercises to help him regulate himself before school. He would jump on the trampoline, swing, do jumping jacks, etc. Then, we'd do some deep breathing and try to relax before entering the school.
I also asked teachers to help. They allowed Ben to roll on a therapy ball, or take time-outs. They allowed him to use a computer instead of writing assignments, since handwriting causes anxiety.
One of the first books ever recommended to me was "The Out of Sync Child Has Fun", which offers great resources for kids dealing with sensory processing challenges. Understanding the link between sensory processing and anxiety helped me find ways to prevent some of the anxiety and respond to it while it happened. There are many resources that offer practical ideas for home and school. "My Sensory Book" offers suggestions for different sensory systems: tactile, vestibular, proprioception, visual, auditory, gustatory and olfactory, and illustrates how children can learn to cope more effectively.
Websites like Specialism also have sections dedicated to sensory processing with valuable information for different settings, sensory challenges and age groups.
Practicing conscious calming for myself and Ben has made a huge difference. It's not always easy, but it always works.
Monday, February 16, 2015
Thursday, January 22, 2015
Success in the Classroom Starts with Collaboration
One of the biggest lessons I've learned in my journey with Ben and school is how to collaborate with teachers. At the beginning of each school year, I met with Ben's teachers to go over his history (medical and academic), his interests and dislikes, social issues and anything else I thought would help them and help Ben have a successful year.
I continued to stay involved throughout the year, asking for regular updates, visiting or volunteering in the classroom and offering any pertinent information from Ben's therapy sessions. Even though I dealt with frustration from time to time, it was very helpful to establish a rapport with the teachers and letting them know you're there to support them.
I continued to stay involved throughout the year, asking for regular updates, visiting or volunteering in the classroom and offering any pertinent information from Ben's therapy sessions. Even though I dealt with frustration from time to time, it was very helpful to establish a rapport with the teachers and letting them know you're there to support them.
I took a lot of advice from Ben's therapists and asked for certain things that weren't necessarily in his IEP, but that would help throughout his day. Here are a few:
1. Sensory Input
Kids on the spectrum need sensory input. They don't seem to get enough of this in school. Whether it's auditory, visual or physical sensory input, it can help your child regulate himself. This can kids focus and attend better, and help provide the stimuli needed to calm anxiety--which can lead to unwanted behaviors. For Ben, he needed regular sensory breaks throughout the day. Sometimes did jumping jacks in the hallway or rolled his body on an exercise ball. Sometimes he sat on the exercise ball to bounce.
He also became very overwhelmed with the noise of the lunchroom. I sent in noise-cancelling headphones he was allowed to wear during lunch, and sometimes the teachers would allow him to eat his lunch in the classroom while they worked. If you know your child's particular sensory needs, find ways to work with teachers to incorporate sensory activities into his school day.
2. Help with Transitions
Ben has always had trouble with transitions, The need for "sameness of routine" is very typical for kids on the spectrum, so even the smallest transition from one activity to another can provoke a meltdown. To help with this, I asked for visual schedules on Ben's desk that showed the progression of his day to help him remember what would happen next. We also tried timers, and verbal reminders ("In five minutes, we'll be putting our work away and going to lunch"). At one point, the teachers even allowed Ben to remain in his homeroom classroom to do his reading work instead of leaving to go to that classroom. It helped a lot.
3. Motivation to Learn
Since kids on the spectrum struggle with non-preferred activities that are required of them, it can help to ask for slight modifications. Ben hates to write, so I asked if he could use a computer to type his work. Ben loves reading, so I asked if he could go to the bookshelf and read for a few minutes as a reward for completing non-preferred activity. When he was younger, Ben was really into ocean life. I used that as a motivator. I printed out ocean-themed math worksheets, we did reading activities with ocean themes, etc.
4. Calm Down Techniques
The biggest hurdle was getting Ben to calm down when he got anxious. Whether it was reading aloud, doing long math problems, joining circle group, etc., there were certain things that set Ben off, inevitably leading to a meltdown. Because some teachers perceive this as "bad behavior" they would discipline Ben, and the situation would escalate, and the full "fight or flight" reaction would occur. Instead of disciplining, explain to teachers what's happening and suggest a "safe" spot for the child to go to until he calms down enough to talk about the situation.
5. Be Clear and Concrete
High-function ASD kids tend to interpret speech literally. Idioms usually don't work because kids don't understand them. Things like sarcasm and double meanings also cause Ben a lot of grief. It helps to explain this to teachers so you avoid frustration from both sides.
The best thing to do is offer and ask for frequent communication, beyond what's required by a 504 or IEP. For great information about helping teachers work with your child in the classroom, visit the OASIS website and read the work of Tony Attwood, a clinical psychologist and expert on Asperger's Syndrome.
He also became very overwhelmed with the noise of the lunchroom. I sent in noise-cancelling headphones he was allowed to wear during lunch, and sometimes the teachers would allow him to eat his lunch in the classroom while they worked. If you know your child's particular sensory needs, find ways to work with teachers to incorporate sensory activities into his school day.
2. Help with Transitions
Ben has always had trouble with transitions, The need for "sameness of routine" is very typical for kids on the spectrum, so even the smallest transition from one activity to another can provoke a meltdown. To help with this, I asked for visual schedules on Ben's desk that showed the progression of his day to help him remember what would happen next. We also tried timers, and verbal reminders ("In five minutes, we'll be putting our work away and going to lunch"). At one point, the teachers even allowed Ben to remain in his homeroom classroom to do his reading work instead of leaving to go to that classroom. It helped a lot.
3. Motivation to Learn
Since kids on the spectrum struggle with non-preferred activities that are required of them, it can help to ask for slight modifications. Ben hates to write, so I asked if he could use a computer to type his work. Ben loves reading, so I asked if he could go to the bookshelf and read for a few minutes as a reward for completing non-preferred activity. When he was younger, Ben was really into ocean life. I used that as a motivator. I printed out ocean-themed math worksheets, we did reading activities with ocean themes, etc.
4. Calm Down Techniques
The biggest hurdle was getting Ben to calm down when he got anxious. Whether it was reading aloud, doing long math problems, joining circle group, etc., there were certain things that set Ben off, inevitably leading to a meltdown. Because some teachers perceive this as "bad behavior" they would discipline Ben, and the situation would escalate, and the full "fight or flight" reaction would occur. Instead of disciplining, explain to teachers what's happening and suggest a "safe" spot for the child to go to until he calms down enough to talk about the situation.
5. Be Clear and Concrete
High-function ASD kids tend to interpret speech literally. Idioms usually don't work because kids don't understand them. Things like sarcasm and double meanings also cause Ben a lot of grief. It helps to explain this to teachers so you avoid frustration from both sides.
The best thing to do is offer and ask for frequent communication, beyond what's required by a 504 or IEP. For great information about helping teachers work with your child in the classroom, visit the OASIS website and read the work of Tony Attwood, a clinical psychologist and expert on Asperger's Syndrome.
Wednesday, January 7, 2015
Pressure. Pushing Down on Me, Pressing Down on You...
As a parent of an ASD child, you have a wee bit more pressure than most parents. Divorce rates tend to be higher due to stress in them family. Income levels and careers are often jeopardized because parents need to quit their jobs or drastically reduce their hours. Internal family life may suffer if siblings become resentful over the attention paid to a special needs child. And friends? Social life? We try our best. We're often on pins and needles at every social outing. But, when we forgot to bring his device/book/toy (name it), to anyplace he would rather not be, and he starts to have full-on, out-of-body experience, causing everyone to with an eyebrow raise and "whew, not my kid" praise...you'll understand.
As tough as it is, I often remind myself how much better I actually have it than others. Still, it's important to remember to take care of yourself. Just today, I had two encounters: one with an old friend and one with a new acquaintance. Both explained how their children were getting in trouble at school for issues related to their diagnosis. Intimately familiar with the issue, I have planned to contact both and talk about options. In the meantime, I wanted to reach out and hug both of them.
There is no shortage of stories of parents who don't know what to do or where to turn, those who just throw in the towel or the worst, those who take drastic measures and do harm to their special needs children.
I can't stress enough how amazing parents of special needs kids are. If you are one, you should be wearing an "S" on your chest every day. We have stamina and patience and a deep compassion that reaches beyond what we thought signed on for. But, we also have those tough days..the ones where we feel the pressure is just too much. If you're feeling that pressure, there is help.
Here are a few:
Respite Services
Autism Speaks Directory of Respite Services
RPAC Respite for Parents of Autistic Children Facebook Page
Easter Seals Directory of Respite Services
Helpful Websites
Kids Enabled
Parent2Parent
As tough as it is, I often remind myself how much better I actually have it than others. Still, it's important to remember to take care of yourself. Just today, I had two encounters: one with an old friend and one with a new acquaintance. Both explained how their children were getting in trouble at school for issues related to their diagnosis. Intimately familiar with the issue, I have planned to contact both and talk about options. In the meantime, I wanted to reach out and hug both of them.
There is no shortage of stories of parents who don't know what to do or where to turn, those who just throw in the towel or the worst, those who take drastic measures and do harm to their special needs children.
I can't stress enough how amazing parents of special needs kids are. If you are one, you should be wearing an "S" on your chest every day. We have stamina and patience and a deep compassion that reaches beyond what we thought signed on for. But, we also have those tough days..the ones where we feel the pressure is just too much. If you're feeling that pressure, there is help.
Here are a few:
Respite Services
Autism Speaks Directory of Respite Services
RPAC Respite for Parents of Autistic Children Facebook Page
Easter Seals Directory of Respite Services
Helpful Websites
Kids Enabled
Parent2Parent
Tuesday, November 18, 2014
Why Pre is Better than Re
In most things that pose any kind of threat to us--health, safety, financial security, we know it's better to prevent bad things from happening rather than redo them. We take care of ourselves to stay healthy, we lock our doors and set alarms, we save money for retirement. I wish we practiced it more with school discipline.
A fantastic article, "Beyond Zero Tolerance: Achieving a Balance in School Discipline" points out the flaws of our current take on school discipline, hearkening to the 1990s, when certain incidents of violence provoked sometimes radical fears. Those fears led to schools "cracking down" on discipline by expelling and even arresting kids for behaviors that "would not be tolerated". What we know now as "zero tolerance."
Disciplining children, especially those with special needs, sometimes by taking away the very things they need most, inclusion, recess and education...doesn't work. Doesn't that seem like a no brainer? Hmmm...let's punish these kids who clearly have some underlying cause to their behavioral manifestations:
When I was rallying for my own son, I thought of so many kids, those with special needs and neurotypical kids, who fall through the cracks. I witnessed it. I volunteering in one Ben's classes. It was an inclusion class, meaning there were a range of kids with varied learning and social issues. As the teacher was sternly trying to get the kids to attend to a video, I saw a child in the back of the room picking on another student. The young girl sitting quietly across from us saw it too. She tried to get the teacher's attention to tell her what was happening, but the teacher told her to be quiet and not interrupt. She tried again and the warning got louder. The girl tried to explain she was only trying to help and I even spoke up. This girl, who was trying to do the right thing, curled into a ball on the floor in the corner, took off her glasses and started to cry. I went to her and said, "you did the right thing. Be proud of yourself." It's a trite example, but what would happen if we just started to listen? What would happen if we got to the root of the problem and tried to prevent it from getting worse?
A fantastic article, "Beyond Zero Tolerance: Achieving a Balance in School Discipline" points out the flaws of our current take on school discipline, hearkening to the 1990s, when certain incidents of violence provoked sometimes radical fears. Those fears led to schools "cracking down" on discipline by expelling and even arresting kids for behaviors that "would not be tolerated". What we know now as "zero tolerance."
Intolerance Makes Us All Zeroes
From women's rights to civil rights, the idea of being tolerant makes us all better human beings. But, the facts are this: "after 15 years, extensive reviews of the literature by researchers and professional organizations such as the American Psychological Association have found no evidence that increasing suspensions does what it has intended and no evidence that expulsions improve student behavior or guarantee school safety. In fact, schools that employ more suspensions and expulsions have poorer ratings of school climate and school safety, higher rates of racial disparity in discipline, and lower scores on academic achievement tests."
Disciplining children, especially those with special needs, sometimes by taking away the very things they need most, inclusion, recess and education...doesn't work. Doesn't that seem like a no brainer? Hmmm...let's punish these kids who clearly have some underlying cause to their behavioral manifestations:
- Probable lack of social skills=Day in the office alone. Silent lunch. No recess...That sure helps with social skills...
- Typically overweight due to preference of video games over physical activity=No recess. No play time...No brains on the part of the school!
- Possible learning deficit due to disability=expulsion. No learning happening there, folks!
- Economic strife that may have led to behavioral manifestations=Gee, let's suspend that kid so his mom has to stay home and not go to work...therefore, she'll make less money and it'll cause more stress!
When I was rallying for my own son, I thought of so many kids, those with special needs and neurotypical kids, who fall through the cracks. I witnessed it. I volunteering in one Ben's classes. It was an inclusion class, meaning there were a range of kids with varied learning and social issues. As the teacher was sternly trying to get the kids to attend to a video, I saw a child in the back of the room picking on another student. The young girl sitting quietly across from us saw it too. She tried to get the teacher's attention to tell her what was happening, but the teacher told her to be quiet and not interrupt. She tried again and the warning got louder. The girl tried to explain she was only trying to help and I even spoke up. This girl, who was trying to do the right thing, curled into a ball on the floor in the corner, took off her glasses and started to cry. I went to her and said, "you did the right thing. Be proud of yourself." It's a trite example, but what would happen if we just started to listen? What would happen if we got to the root of the problem and tried to prevent it from getting worse?
Turning From Zero to Hero
In 2011, Education Secretary Duncan and Attorney General Holder launched the Supportive School Discipline Initiative to "support the use of school discipline practices that foster safe, supportive, and productive learning environments while keeping students in school."
It's working. Schools have begun to reduce exclusionary discipline by replacing it with ways to teach positive behavior. In the Denver school system, the Restorative Justice initiative focuses on shifting from punishing individuals after wrongdoing to repairing harm and preventing reocurrence.
Special needs children with behavioral challenges have certain safeguards under the Individuals with Disabilities Education Act (IDEA). Parents facing this issue should have this in their arsenal. Procedures such as a Functional Behavior Analysis and a Behavior Intervention Plan (emphasis on the word Intervention!) are critical tools to advocate for your child. Know your rights and help teachers and administrators realize misbehavior is not often something your child can control. Disciplining the child for something they may not even remember or understand is useless. Helping them to find ways to cope and learn teaching positive behavioral strategies...priceless.
It's working. Schools have begun to reduce exclusionary discipline by replacing it with ways to teach positive behavior. In the Denver school system, the Restorative Justice initiative focuses on shifting from punishing individuals after wrongdoing to repairing harm and preventing reocurrence.
Special needs children with behavioral challenges have certain safeguards under the Individuals with Disabilities Education Act (IDEA). Parents facing this issue should have this in their arsenal. Procedures such as a Functional Behavior Analysis and a Behavior Intervention Plan (emphasis on the word Intervention!) are critical tools to advocate for your child. Know your rights and help teachers and administrators realize misbehavior is not often something your child can control. Disciplining the child for something they may not even remember or understand is useless. Helping them to find ways to cope and learn teaching positive behavioral strategies...priceless.
Wednesday, November 12, 2014
Let Your Freak Flag Fly! A Lesson for Everyone
In our house, this is a motto. It comes from one of my favorite movies, The Family Stone. Fly Your Freak Flag. In the movie, Meredith (Sarah Jessica Parker) is an uptight New York overachiever about to marry the wrong man. She travels to meet her intended's family, which escalates to a 'get-me-out-of-the-house' holiday gathering. She escapes, courtesy of her impending bro-in-law (Luke Wilson, yes...he's damn cute. Carry on) and goes a bit cray cray and unbuttons her nun-like couture to let 'er rip. You know...drunken bar dancing a la Elaine on Seinfeld.
My point? Leading up to that moment is one of my favorite lines ever. "You have a freak flag. You just don't fly it." (Thanks, Luke).
This movie came out a year after Ben was born. I had no idea of the effect of that particular line, but I liked it. What impacted me more was the relationship of the grown children in the movie with their dying mother. Now, at this point, my own mother would wait another five years to die of cancer and a related cardiac arrest, but at this point in our lives, she's just pulled out of a burst aortic aneurysm, that led to emergency open heart surgery, which she miraculously survived.
My long-winded point is, that motto sort of saved me many times. Ben remembered it. We'd be in public places, movies, parks, events, etc, and if the music moved him, he'd just get up and dance. And I LOVED it. I relished it. I joined in it.
His older brother was mortified at times. He'd yell at me and be embarrassed, but I kept reminding him that some day, although there is now way he can see it now at age 12, he'd laugh and feel love and happiness at these silly, unconscious moments we all we wish we had more of. I'm guilty...I thrive on routine for the sake of gettin' it done on time. But in reality, I love to let my freak flag fly. Caretakers, this doesn't mean, go get high or drunk and relieve yourself of the sometime burdens of having a kid on the spectrum. It means...find a way to relate. Find a way to let their freak flag fly and never, ever be ashamed of it.
My point? Leading up to that moment is one of my favorite lines ever. "You have a freak flag. You just don't fly it." (Thanks, Luke).
This movie came out a year after Ben was born. I had no idea of the effect of that particular line, but I liked it. What impacted me more was the relationship of the grown children in the movie with their dying mother. Now, at this point, my own mother would wait another five years to die of cancer and a related cardiac arrest, but at this point in our lives, she's just pulled out of a burst aortic aneurysm, that led to emergency open heart surgery, which she miraculously survived.
My long-winded point is, that motto sort of saved me many times. Ben remembered it. We'd be in public places, movies, parks, events, etc, and if the music moved him, he'd just get up and dance. And I LOVED it. I relished it. I joined in it.
His older brother was mortified at times. He'd yell at me and be embarrassed, but I kept reminding him that some day, although there is now way he can see it now at age 12, he'd laugh and feel love and happiness at these silly, unconscious moments we all we wish we had more of. I'm guilty...I thrive on routine for the sake of gettin' it done on time. But in reality, I love to let my freak flag fly. Caretakers, this doesn't mean, go get high or drunk and relieve yourself of the sometime burdens of having a kid on the spectrum. It means...find a way to relate. Find a way to let their freak flag fly and never, ever be ashamed of it.
Thursday, November 6, 2014
Wright's Law and Other Important Resources
Welcome to the world of acronyms. OMG, there's so much to know. :)
In dealing with all of the issues we had during Ben's 4th grade year, I did a ton of research, met with special ed lawyers, went to the school board, etc.
The most important source of information for me was Wright's Law. This is the Holy Grail of advocacy and legal rights of special needs children. The site, along with books, videos and many other resources are the work of Pete and Pam Wright. Pete is a special needs attorney and Pam is a psychotherapist.
Their website has information about anything and everything you need, but for my purposes, the case law regarding education was a lifesaver. I learned everything I could about FAPE (Free and Appropriate Education), IDEA (Individuals with Disabilities Education Act), more about IEPs than I ever knew and other critical parental protection rights.
I was armed and ready and it served me well. In the end, I decided to pull Ben out of public school because I thought it was in his best interest, but I fought for his rights and made sure the administration knew kids were slipping through the cracks and being misunderstood and unfairly punished for misbehavior that is a manifestation of their disability. This ruling and ability to have a Manifestation Determination Review (MDR) is something every parent facing any kind of issue with the school system should know inside out.
There are a lot of other laws and processes you should know if you don't already, including information about Functional Behavior Assessments (FBA) and Behavior Intervention Plans (BIP).
I'll be posting a list of other really great resources.
In dealing with all of the issues we had during Ben's 4th grade year, I did a ton of research, met with special ed lawyers, went to the school board, etc.
The most important source of information for me was Wright's Law. This is the Holy Grail of advocacy and legal rights of special needs children. The site, along with books, videos and many other resources are the work of Pete and Pam Wright. Pete is a special needs attorney and Pam is a psychotherapist.
Their website has information about anything and everything you need, but for my purposes, the case law regarding education was a lifesaver. I learned everything I could about FAPE (Free and Appropriate Education), IDEA (Individuals with Disabilities Education Act), more about IEPs than I ever knew and other critical parental protection rights.
I was armed and ready and it served me well. In the end, I decided to pull Ben out of public school because I thought it was in his best interest, but I fought for his rights and made sure the administration knew kids were slipping through the cracks and being misunderstood and unfairly punished for misbehavior that is a manifestation of their disability. This ruling and ability to have a Manifestation Determination Review (MDR) is something every parent facing any kind of issue with the school system should know inside out.
There are a lot of other laws and processes you should know if you don't already, including information about Functional Behavior Assessments (FBA) and Behavior Intervention Plans (BIP).
I'll be posting a list of other really great resources.
Thursday, October 30, 2014
Aspergers and 4th Grade: Our Quicksilver (Part 2)
Second Grade. Things were still going ok. Again, the teachers he had knew he was on the spectrum, but also knew he was smart. They found ways to work with him, for example, he's an advanced reader, so in his reading class, his teacher would tell me, "he doesn't sit still and he doesn't make eye contact, but I know he's listening because when I call on him, even if he's looking out of the window, he answers and it's correct." The times where Ben started to get upset or act up were met with redirection or timeouts then.
But, we started to notice something. The transition from class to class became harder. Kids on the spectrum don't do well with transition typically, so this was no surprise. It became harder for him to regulate himself after he moved to a new room. So, they made accommodations, He stayed on the advanced reading track but in the same room as his other class. It worked...for a while.
Third Grade. This was the transition year after the divorce. Ben was placed in a co-teaching class with neurotypical kids and some who either had learning disabilities or were on the spectrum. I'd say that was about 20% of the class. The blessing that year came in his lead teacher. Her name is Carolyn Howard and she became our angel. A mom of five, I couldn't get over how much she took to Ben and understood and empathized with him. To this day, we are friends and I thank God she was his teacher and became part of his life. He loves her and she made an incredible impact on his life for one reason...she cared. A lot. Enough to attend autism conferences on her own time to learn more about teaching Ben. Enough that when we ran into trouble in fourth grade, she rallied for Ben.
There will be, or have been, these people in your child's lives. Cherish them. They are a gift. Carolyn and I learned a lot together. We figured out a lot as went. I'd learned so much about autism and how to deal with behaviors, anxiety, etc. The one thing I wasn't prepared for was the beginning of "the turn"...when social skills become the key to everything. Ah...social skills...stay tuned for more on this ever challenging issue!
But, we started to notice something. The transition from class to class became harder. Kids on the spectrum don't do well with transition typically, so this was no surprise. It became harder for him to regulate himself after he moved to a new room. So, they made accommodations, He stayed on the advanced reading track but in the same room as his other class. It worked...for a while.
Third Grade. This was the transition year after the divorce. Ben was placed in a co-teaching class with neurotypical kids and some who either had learning disabilities or were on the spectrum. I'd say that was about 20% of the class. The blessing that year came in his lead teacher. Her name is Carolyn Howard and she became our angel. A mom of five, I couldn't get over how much she took to Ben and understood and empathized with him. To this day, we are friends and I thank God she was his teacher and became part of his life. He loves her and she made an incredible impact on his life for one reason...she cared. A lot. Enough to attend autism conferences on her own time to learn more about teaching Ben. Enough that when we ran into trouble in fourth grade, she rallied for Ben.
There will be, or have been, these people in your child's lives. Cherish them. They are a gift. Carolyn and I learned a lot together. We figured out a lot as went. I'd learned so much about autism and how to deal with behaviors, anxiety, etc. The one thing I wasn't prepared for was the beginning of "the turn"...when social skills become the key to everything. Ah...social skills...stay tuned for more on this ever challenging issue!
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