Archive
The Greatest Present of All…No Gift Wrapping Required
December 22, 2011
By Dan Olawski
The first time we tried to introduce Mikey to Santa, he ran so far in the opposite direction that he came up behind Ol' St. Nick (think about it…you'll get it, heh, heh). Christmas, Hanukah, all of the holiday seasons, are often challenging times for our children with autism (and for us parents, too).
We celebrate Christmas in our home, and have always tried to have a traditional holiday celebration. Of course, all the standard elements are there: the tree, lights, music, Santa, presents, etc. Ah, but when it comes to autism, as we all know well, standard and traditional are not always standard and traditional.
As I mentioned, the whole Santa Claus thing didn't go over well with
Mikey (as a matter of fact, he didn't care for the Easter Bunny we saw
in the mall, either--but he absolutely loves when we see Chuck E.
Cheese…I guess giant walking rodents are more his thing). He's become
more comfortable over the past couple of years and now quickly
identifies the jolly, stout man in the red suit as “Santa” (or, lately,
the even cuter response when asked who Santa is: “Christmas”).
Christmas
lights and music are even bigger potential problems for children with
autism. But as it was with Santa, repeated exposure in a positive way
(desensitizing) has helped Mikey to enjoy these beautiful aspects of the
season.
Mikey's choice of music is often restricted to the “Bob
the Builder” soundtrack or something similar, so if one of his favorite
cartoon characters is singing a Christmas tune, he’ll pay extra
attention. Being in a classroom environment where music is one of the
tools used to teach has also helped Mikey to embrace all kinds of music.
Just another reason I firmly believe that art and music can be used as a
pathway to getting our children to communicate with us and to helping
them feel more comfortable in an otherwise confusing environment.
As
for the pretty, multi-colored brightness of the yuletide lights, my
wife and I felt warm hearts this year to see Mikey smile and stare as we
drove past the beautifully decorated houses in our neighborhood. We
didn't waste a second taking him to a drive-thru Christmas lights
display, and the excitement that we saw come over him was well worth
every penny of the donation fee. Of course, now daddy is feeling the
pressure to create a Broadway-show-quality lighting display at our home
(I'm afraid Mikey is out of luck on that one…yours truly is not-so-handy
with that sort of thing and my sad attempt at Christmas lights equates
to a lit snowman with a bad habit of falling over into pieces each
night).
The remaining challenge of Christmas that Mikey still doesn't really understand is presents. The first Christmases after we entered the world of autism were a bit heartrenchining, as we would place a wrapped present in front of Mikey on Christmas morning only to watch him get up and walk away or at best be more interested in the gift's box. But we've persevered every Christmas (and birthdays, too) and Mikey is to the point where he’ll rip open his presents' wrapping paper on his own now. We’ve also taken to bringing him to Toys 'R Us and letting him walk in front of us by himself as we watch what toys he'll walk up to or what keeps his interest. At least this way, if we buy those toys for him, we feel like he sort of gave us a Christmas list.
Helping our children with autism through this time of year takes the same focused steps we use every day: patience, love and awareness. Those are the gifts we give our children on a daily basis…no holiday needed…no gift wrapping required.
So, when the holiday is over, the guests have gone home, and the house is a mess, embrace what remains…the true meanings of the holiday (peace, love and family). Hug your child, tell them you love them, and be thankful for the gift you hold in your arms.
Topics:Living with Autism
Ambassadors
December 13, 2011
By Dave Dempsey
Ambassadors.
It is what we call the people who fall in love with Paperworks Studio. You carry the torch and share what we do over a cup of coffee or, like below, an email to friends. From all of the 150+ artists at Paperwork Studio, we sincerely appreciate your will to change lives.
To become an ambassador pf Paperworks Studio and support the Autism Society, visit the Autism Society store.
Dear Friends,
It's a season for causes. Two of my favorites –environmental protection and human dignity – have come together in a mission-oriented social enterprise company, Paperworks Studio. I hope you'll consider making purchases of recycled holiday cards from this company, and in the process support independence for people working courageously to overcome challenges like autism and physical disabilities.
Paperworks Studio, based in Traverse City, MI, engages more than 150 artists who create appealing recycled holiday cards handmade with rose petals, wheelchair wheels and other unusual materials. The artists also make other unique cards not sold anywhere else, including Lee Jeans recycled blue jean cards and cards made with wool sweaters, coffee grounds and other recycled materials. 
I've used the blue jean and the coffee ground cards, and I highly recommend them. If you know me at all, you know I'm always looking – not just at the holidays – for cards to send friends and family that are different from the norm. Now I have a year-round supplier, and I'm glad that the work going into them helps those who create them as well as the planet.
You can order the cards directly here: http://www.paperworksstudio.com/
If you have time for a short video about the Studio, check it out here.
Please give this project all the help you can, enjoy the use of the recycled cards, and spread the word.
Thanks.
Dave Dempsey
International Joint Commission
A Paperworks Studio artist hard at work
Topics:Living with Autism, News
Melissa's Story: Autism, Jewelry and Making a Difference
December 12, 2011
By Melissa Winter
My name is Melissa Winter and I have two boys: Max, 7, and Sam, 4. Three years ago I saw a need in my community to raise money and awareness about autism, so I launched an organization called The Puzzling Piece that could fill that need. Since then, I’ve been able to help families like mine and the nonprofit organizations that serve them.
My oldest son Max was diagnosed with autism when he was three-and-a- half years old. Imagine sitting in a doctor’s office hearing the words, “Yes, your son has autism.” Of course, we knew something was wrong. We already had Max in therapy four hours a week. But the final diagnosis was something we would need time to wrap our heads around.
Max and Mom
After the crying was over, my husband Brett and I realized we needed to make some changes to help Max. A lot more therapy was needed! Brett and I did a lot of research and found that being outdoors, doing, seeing, touching and, yes, playing would be some of the best therapy we could give Max. So, we decided to move from New Jersey to South Florida. The sun and warmer weather meant more time on the playgrounds and in the pool. The additional time Max could play and smile was exactly what I wanted from the move. After a full day of school and more hard work at therapy, an hour of fun in the pool would be the best part of our day.We also found a terrific school for Max to attend that specialized in helping children with autism and related disabilities.
We were looking for a place that would focus on his development and help him thrive in society. We became very involved with the school and wanted to do our part with fundraising. I decided to put my jewelry design degree to work, which is how I came to create The Puzzling Piece. The puzzle piece is a widely recognized symbol of autism, so I designed a hand blown glass puzzle piece necklace, had it packaged in a small gift bag and brought it to the executive director of the school. She loved it! We used it as a fundraiser and it was a success! Our school of 85 children sold 147 necklaces in a week and a half! Everyone got involved from the teachers, to the parents and even the board members of the school. My goal at The Puzzling Piece is to raise awareness of autism.
The Winter Family
Topics:Living with Autism
The World of RC Racing
December 9, 2011
By Lee Passehl
My name is Lee Passehl, and I race Radio Control Cars. I have been racing RC cars for 17 years now. I plan to write many blogs about my sport and how my autism helps and hurts my abilities at the track.
These cars are not toys; they are engineered to race competitively and handle well at very high speeds. They are made out of materials such as carbon fiber, aircraft aluminum, and titanium. They are also made out of high durable plastic and designed take a good hit up to 35-40 miles per hour without breaking. Some are electric powered and can cost from $125-$500, and there are nitro powered cars that can cost from $300-$700. The transmitter that I use to control my car has a mini computer inside. My transmitter (or radio for short) can adjust how sharp the wheels turn and how fast they turn as well, how much the wheels accelerate or spool up, and how hard or soft you want the brakes to engage. My dad works on the car for me.
I am a four-time national champion. In August of 2009, after a 13-year long journey, I achieved my life-long dream by winning the Tamiya North American Finals, which earned me a trip to Japan to compete in the Tamiya World Championship. Right now I am running nitro powered on-road touring cars, and I am running electric powered off road two-wheel-drive buggies. These are all new classes to my father and me, and we are just learning how to run these machines. We started running nitro touring cars in February of 2011, one day before my 26th birthday in a race called the “KO Propo Nitro Grand Prix” a race held in a transit center outside of Los Angeles. This was my first big race running these types of cars. I finished 7th overall against some very good competition from across the nation.
I started racing electric off road in fall of 2011 at an indoor RC race track near Anaheim, CA called West Coast RC Raceway. Off-road is fun and very challenging to run because you’re going over jumps and you have to learn to time the jump right, not to mention some of the greatest professional radio control car racers in the world race here in Southern California. I don’t race in this class in off road right now, but someday I might.
I hope to get some good comments from you, thank you.
Here's a photo of my nitro powered 10th scale car. Speeds up to 65 MPH.
Here I am with my 1st Place
Trophy. The dog tag was the award I received for being the Top Qualifier.
Top 10 Finishers in the UF1
Series... I am in front row, middle.
Topics:Living with Autism
Jobs to Do
December 7, 2011
By Jeff Stimpson
They're talking jobs in Alex's future, as he nears 14 and "vocational" begins to appear on his IEP. They're talking "jobs" in 14 million other futures right now, of course, but as Alex gets closer to adulthood I try to not think about that.
There are various jobs Alex (who has PDD-NOS) can do. Even now in the grocery store he aligns cans so the labels face the same way. At grandpa's lake house, he sets the table for a dozen with the handles of the coffee cups all facing the same way. There are other examples.
Jobs he does:
Alex empties the dishwasher every morning before the sun is up (his school bus comes at 6, and he's often up by 4:30 anyway). “Knives, forks and spoons, Alex,” I say over the lower bin, which I've pulled out after he’s made sure to close the soap box. One by one he drops the utensils clattering into their slots in the drawer. Except for the paper-thin tablespoons my wife Jill paid 25-cents each for, of course. Alex hates those, and morning after morning he tries to slide them unnoticed into the rear end of the drawer.
He does laundry, hauling the heavy cart to the elevator of our apartment building and punching "B" for basement. I still keep an eye on him down there, as it wasn't long ago that he darted for the door and even locked himself in the bathroom. These days, he scoops the fallen socks and underwear from the floor and stuffs them into the triple-loaders. When the laundry’s done, he wrestles the tangles from the washer. Once, when all the triples were taken and we had to use the double front-loaders, Alex stared at the triples then looked for a moment at the doubles. He wanted to understand but the doubles were new to him. He wanted to understand - and I hoped he didn’t realize that other people understand the difference between the doubles and the triples much, much faster than he can.
Jobs he creates:
Sweeping pretzel and cookie crumbs from the cushion of the couch, the floor of the living room, and the bed of his little brother Ned, where Alex perches - never on his own bed - to munch and watch the iPad. “Alex put crumbs in my bed!” says Ned, his arms arcing madly across the sheets. When I was a little kid, I could never sleep when I thought there were crumbs in my bed, either. I don’t like to think about the roaches.
Alex up in the middle of the night and first thing in the morning also means I have to wipe around the toilet bowl. Enough of that, for now. He scatters clothes when he’s picking out what he’s going to wear that day, socks and pants and T-shirts littered around the foot of his dresser like Civil War dead in the Brady photograph around the walls of a fort. Alex scatters Legos and makes Ned cry and then swear. Thanks, Alex!
We learn more about Alex and jobs when we visit his classroom. We learn he orders the supplies for his classroom and delivers newspapers to all the classrooms in his school. We learn too that he sweeps floors and wipes tables in his classroom. Funny he never mentioned that to us.
Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of “Alex: The Fathering of a Preemie” and “Alex the Boy: Episodes from a Family’s Life With Autism” (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on Linked In under “Jeff Stimpson” and Twitter under “Jeffslife.”
Editor's note: Leave us a comment and share the jobs in your life! Don't forget to sign in before commenting.
Topics:Living with Autism
Autism in Real Life: A Conversation with James Durbin: his New Album, Music and Autism
December 5, 2011
By Kymberly Grosso, Autism in Real Life
The following post is an excerpt from A Conversation with James Durbin: his New Album, Music and Autism originally published in the Autism in Real Life blog:
James Durbin, who stood out as an exceptional singer during American Idol, Season 10, brought fresh sounds and performances to America. James consistently challenged the status quo with moving rock and metal tunes. Early in the competition, fans found out that James also has Tourettes and Aspergers Syndromes. Naturally, parents like me and kids like my son, who also has Aspergers, cheered for him throughout the competition. Not only did James shake up the show with his real, in your face emotional performances, he became an instant role model to many kids like my son ,who would watch him on TV and say, "He is like me, and he is amazing!"
With American Idol behind him, James Durbin has once again proved his tenacity and talent as heard in his new album, Memories Of A Beautiful Disaster. He has said the album is a reflection of the struggles in his life and a celebration of his recent success. Perhaps one of the most moving songs on the album, is Screaming, which many people can relate to, as it was written about Jame's own experience with bullying and how he handled it. There are so many powerful songs on the album, and another one of my favorites is Stand Up, which is an upbeat, rocking, "get up on your feet" song. In fact, the NFL added Stand Up to its game day music line up which is sure to make fans stand and cheer.
Recently, I had the opportunity to interview James about his new album, music, his struggles with bullying and his take on autism. He was incredibly gracious, well spoken and reminded me again of the incredible possibilities that are out there for our kids. While I could have written around the interview and provided bits and pieces, I thought it would be best to post the interview in its entirety.
There is a reason he is a role model. He experienced adversity yet he prevails with exceptional music and riveting, live performances. During the interview, James was open and honest about his experiences growing up with Autism and Tourettes, bullying, and how these experiences are reflected in his music. As a parent who loves stories of hope and success, I am so appreciative that James is significantly contributing to American music as well as sharing his perspectives about autism.
A Conversation with James Durbin:
GROSSO: When it comes to the Asperger's, is there anything about having Asperger's that you feel has really helped with your career? Does it affect your music? I know my son says sometimes it increases his focus and he's also really good at memorization. So I was wondering if that helps you with lyrics and things like that?
DURBIN: Definitely. I mean one of the things about having Asperger's is that...I think it's helped me be really involved with what I like. I see this with a lot of autism cases and kids with autism...what they like, they're a genius at it. They know everything about it and I feel like I know everything that my voice can do. More of the other things I've always been into is pro wrestling, and I can talk about wrestling for hours and hours and I don't know. Is your son like that?
GROSSO: Yes, he is like that. He can talk about video games for hours. It definitely increases his focus when it's something he likes.
DURBIN: People with art and drawing and anything with wrestling...I used to draw wrestlers and make collages of wrestlers and cutout pictures. What it was like, it was just all wrestling all the time. I would cut up magazines and paper them and glue them or staple them together, just to have that artistic expression...everything had to be wrestling all the time growing up.
GROSSO: Is there anything about the Asperger's that maybe made things more difficult for you in your career as you've been thrust into the spotlight and having to talk with people all the time?
DURBIN: Yeah. I definitely think that Asperger's there definitely was. Sometimes I still have slip-ups because one of the things with Asperger's -- you could say that I don't really have a filter and things will come out of my mouth, and I won't think about them before I say that and I don't think about the consequences of what I say before I say it.
GROSSO: Are there any sensory issues you've needed to adjust to when you're on stage or singing, like the lights or the noise?
DURBIN: I've always had a hard time with washing my hair, feeling like the wetness in my hands, the squeaky sound. I can't stand when my shoes are wet and I have to walk on like a plastic that makes it make a squeak sound...or like getting in the car with wet shoes and having the heaters on...the gas pedal and everything. It's just like, ugh.
There's more! Read the rest of the story here.
Topics:Living with Autism
‘Mother Warriors’ Scare the Heck Outta Me (And Other Tales of an Autism Dad)
December 5, 2011
By Dan Olawski
The first time I ever heard the expression “Mother Warriors,” I half expected to see a pink tank rolling down the street or perhaps a platoon of women in designer fatigues with daisies sticking out of their gun barrels. But then, after I let my out-of-control imagination subside, I was able to see the true strength and power of these ferociously focused females.
Over the past few years since my son Mikey’s autism diagnosis, I’ve experienced the phenomenon of the mother warrior autism mom and the oftentimes ignored autism dad. Being an autism dad is one of the most challenging things a man can experience and requires a life-altering transformation.
The mother warriors I’ve come across transcend the traditional nurturing role of a mommy to seize the warrior spirit that lets them become relentless in the drive to get whatever their child needs to thrive. The ironic thing is that the autism dad needs to go beyond the traditional male trait of being warrior-minded. No, the autism dad requires much more patience, tenderness, and love than typical of a warrior. Our fight needs to be against our natural inclinations. Moms forming groups, battling school boards, etc. shows the natural female ability to be organized and come together as a group. Men don't organize. When men organize it usually turns into a political party...and we all know how successful they are. No, men just want to fix things. How can we fix autism? Is there a tool for it? How about a little WD-40 or some duct tape?
I learned early on as an autism dad that it’s not about fixing…it’s about giving. An autism dad has to give all of himself to his child. You can’t hold back any attention, any compassion, any understanding, and most of all, any love. Not an easy task for most men.
I was fortunate to learn how to be an autism dad because of the silver lining of a dark, dark cloud. I was unemployed for almost two straight years right at the time when Mikey was diagnosed. I basically became “Mr. Mom” and was able to spend an incredible amount of time with Mikey. We learned so much from each other during those tough times and Mikey truly kept me from falling into a deep depression. My biggest smiles of the day were picking Mikey up from his developmental school and then a little later when my wife would walk in from work. My family was my inspiration and my foundation.
Being an autism dad has helped me to fine-tune natural skills I had, and to develop new skills that I never thought I’d need. Taking Mikey to t-ball and soccer is second nature to me…I waited my whole life to be a sports dad. Asking people for money while fundraising for an autism charity…so out of my comfort zone. But whether I’m helping Mikey throw a baseball, or raising $1700 for charity, it’s all with the single focus of helping my child overcome autism.
So, my advice for new autism dads, or for dads who haven’t quite figured out the whole autistic child thing, is to embrace everything there is about your child and their special needs. Go to their doctor appointments, be a part of their therapy sessions, go to their schools, get involved with autism charities, read everything there is about autism, and be prepared for anything your child needs. Preparedness is the way to win battles and wars. Just ask a mother warrior.
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Editor's note: Do you agree with Dan? Leave him a comment and share your thoughts. Just don't forget to sign in first.
Topics:Living with Autism
Happiness
November 18, 2011
By Natalie Davis, Miss Minnesota 2011
Trevor brings me so much joy. I’d like to take the opportunity to share a few sweet stories about my brother and best friend, Trevor.
I recently headed home to Dassel to take care of some last minute Miss America paperwork, order my plane tickets to Las Vegas, and watch The Grinch with Trevor. Trevor’s favorite topic of conversation as of late is Christmas. Each year, he celebrates “Christmas in July.” This year, he was so excited for Christmas in July that he started watching Christmas movies in June. For months, he has been watching such movies as Elf, The Santa Claus, Rudolph the Red-Nosed Reindeer,and Frosty the Snowman. This Christmas cheer continued past July all the way until now, a week before Thanksgiving, and I’m sure his excitement over Christmas will only grow leading up to the big day. Now, he makes lists of what he wants for Christmas, what he wants to get his family members for Christmas, and where he wants to shop for Christmas. Needless to say, he is VERY excited for Christmas to come!
Trevor also had a big day last week, appearing as a special guest at the Miss Mankato pageant, a Miss America local preliminary competition in Minnesota. He played “Midnight Rhapsody” by Melanie Bober on the piano. He was a huge hit! And he LOVED being in the spotlight! When he came backstage right before he played piano, all the contestants were dressed in their evening gowns and they told him how excited they were to hear him play. A huge grin appeared across his face, and he looked at me and said, “They’re going to think I’m cute!” Later, the contestants surprised the audience by dancing through the aisles of the auditorium. One of the contestants got Trevor up from his seat to dance. He told me later that it was the best experience of his life; he had never danced with a girl before! It was such a special night for him!
Trevor makes me smile more than any other person in the world. He is such a gift to my life.
Natalie Davis
Miss Minnesota 2011
To learn more about the Miss Minnesota Organization, please visit www.missminnesota.org. To follow me during my year as Miss Minnesota, read my blog at www.nataliedavis.weebly.com.
Topics:Living with Autism
How My Brother Disclosed his Asperger’s Syndrome
October 21, 2011
By Natalie Davis, Miss Minnesota 2011
"No! Don't say that! I don't wanna talk about it!" Trevor was having a fit. He defiantly plugged his ears and shut his eyes as I told him about the kids at Awesome Club who also had autism spectrum disorder (ASD). I sat next to him on his bed, trying to explain that having Asperger's Syndrome was nothing to be ashamed of. All I accomplished was an increase in his fury because I had wrinkled his sheets. Towering over me with his six-foot-two frame, he clumsily pushed me out of his room and slammed the door, grumbling that he now needed to fix his bed. As I stood behind the closed door of his room, I knew he was engrossed in the detailed process of remaking his bed one layer at a time. This kind of behavior was not out of the ordinary for my brother Trevor.
Asperger’s Syndrome has always been a touchy subject for Trevor. Like most teenagers, he did not want to be viewed as different. So, when I found out that on his first day of college, he had stood in front of the class and said, “Hello, my name is Trevor Davis, and I have Asperger’s Syndrome,” my jaw dropped. I might have predicted he would mention his obsession with trains or his love of his two dogs, but to disclose his Asperger’s Syndrome to 40 strangers? To say I was shocked is an understatement. Furthermore, at the request of his professor, he arranged a discussion panel consisting of himself, our mom, the head of disability services and me.
He bravely stood in front of the class and told his peers what it was like to have Asperger’s Syndrome. He explained that loud noises and bright lights bother him and that he sometimes has trouble understanding jokes and sarcasm because he views the world in black and white. He also made sure to let people know that he was smart and hard working; he would not let his disability stand in his way of success.
Trevor never ceases to amaze me. The courage he had to disclose his disability is a sign of his maturity, and I believe his ability to share his challenges and strengths will help him find success later in life. Trevor’s goal is to be a best-selling children’s author, so stay tuned! You are sure to see his books at Barnes & Noble one day!
To learn more about the Miss Minnesota Organization, please visit www.missminnesota.org. To follow me during my year as Miss Minnesota, read my blog at www.nataliedavis.weebly.com.
Topics:
Watch Out World…Here They Come!
October 20, 2011
By Dan Olawski
“I’ll be right there! Watch out world, here we come!” said Mikey as he raced across our living room. I tend to try to add my interpretation to the words that come out of Mikey’s mouth. I believe there’s often actual meaning to his echolalia-dominated sound bites. But it seemed perfectly metaphorical to hear these words a few days before the new school year started as I imagined the growing number of children with autism who would need exposure to education and proper teaching.
“Watch out world, here we come!” even sounded a little ominous coming out of the darkness that we experienced for a couple days after Hurricane Irene paid a visit to Long Island. That was at the end of a three-week period that Mikey was without school or any home services at all. Needless to say, we were thankful for the lights to come back on and for school to start back up again.
We’ve been very fortunate that Mikey has always loved school and even more fortunate that he’s always had great teachers and staff helping to address his educational and developmental needs. He’s had home services or been in a school environment since he was about two years old. This year he’s in an 8-1-2 first grade class in our school district. Mikey’s facing the challenges of a new school year, new school, new teacher, and a new school bus. Because of the way things are set up around here, he couldn’t stay at the school he was in for kindergarten last year because they didn’t offer a class for children with autism in first grade. Sadly, this is a typical problem our non-typical children are faced with every year.
It worries me when I think of how many of our children are of school age or need the formal education and therapy from a developmental training environment. I wonder: Are there enough well-trained teachers? Do we, as parents, know what we should expect or demand of a teacher or therapist? What do/should they expect from us and our children?
With about a month of the new school year behind us, it seems natural that many parents might be having these same thoughts and especially might be feeling frustrated about dealing with questions and challenges regarding their child’s education and development. Perhaps they don’t have a good resource to turn to for answers or maybe they are feeling overwhelmed by the entire process. Despite Mikey’s history of schooling, his mother and I still feel a little overwhelmed at the start of each year.
As I mentioned, over the past few years Mikey has had some amazing teachers and I decided to turn to a few of them for some advice for parents of children with autism entering a school/educational environment or for children starting in a new class or with a new teacher. These three amazing ladies have almost thirty years combined experience working with children with autism and you’d be hard-pressed to find teachers as dedicated, knowledgeable, and caring as Angela Bove (a special education classroom teacher with ten years of experience working with children with autism), Jennifer Heyman (a special education classroom teacher with five years experience), and Kathy Harney (a special education home-services teacher with 14 years experience with children with autism):
DAN: What would you say are the most important things parents should know, or should ask, when their child is starting in school or starting a new school year?
ANGELA: Parents should find out what the teacher’s philosophy is and how the teacher will communicate information to them. Parents should [also] inquire about social skills and how they are taught.
JENN: If the child is just starting to attend school, the parents should ask questions about the services that are provided (i.e., team meetings, parent training, home visits, and related services). Parents could also ask about opportunities for social skills groups (circle time, group instruction, play groups).
For students that are already in school, parents should familiarize themselves with the new classroom staff early on. Be accepting of all ideas from the new teacher, while still divulging important information about the skills that your child can already perform.
KATHY: I cannot overemphasize that parent and family involvement is key to success in the child’s learning. The home environment and parent participation is a huge factor as to how solidly a child will progress, not as compared to other children with autism, but as compared with his own potential. Parents and teachers are a team, working together for the child.
Parents will be called upon to participate in their child’s learning by understanding the child’s program and the reasons behind it, and also to generalize learned skills with consistency when the teacher is not there. Parents are a most valuable resource for teachers in planning programming.
What does a teacher expect from a new student and his/her parents?
ANGELA: I believe the teacher should have no expectations of either. Every child is different and every parent has had a different experience. As a teacher, I have no idea what it is like to live day in and day out with a child with specials needs. I make no judgment about the child or the parent because I have not walked in their shoes. I do my best to understand where the parents are coming from and try hard to help them in any way that I can.
As for the child, I do not expect anything from a new student. As the teacher, I expect to immerse myself in their world and try to gain their trust as I figure out how they think, learn, and communicate.
JENN: Every teacher should set the bar high for each student, [but] have no preconceptions. The teacher should "push" each student to perform to the best of their ability in every area [and encourage] parents to be open communicators.
KATHY: A [home] teacher will expect that parents provide a physical environment for child and teacher that is conducive to learning (including a place that is free from distractions), have the child “ready to learn” for his sessions (clean and dressed, awake and alert are usually a good start), know that teachers have different comfort levels regarding parents’ presence and/or participation while they are working with the child in a session (ask your teacher what he/she prefers, and work with that), and will be involved in their child’s learning (the more you are, the better for your child--it’s that simple).
What ways do you think are reasonable for parents to be able to communicate with their child's teacher?
ANGELA: Communication is the key to success. Because many children with autism struggle with the ability to communicate, parents need to be made aware of what their child experiences each day. Many children have difficulty with either verbal recall or they may not have the verbal ability to tell their parents how their day was. Being able to talk to a child about their day helps to reinforce language and other skills. On the flip side, it is always a good idea for a teacher to know what happened at home so they can do the same in school.
I feel that the teacher and parent should come up with a way to communicate that is comfortable for both of them. Email, texting, phone, communication books, pictures, and log sheets are great tools for communication and I utilize them all. It takes some time but in the end it makes all the difference.
JENN: Parents should always have the ability to call the teacher if they need to discuss something. Calling before school or after the children leave will allow the teacher more time to talk.
KATHY: An in-home program often allows for face-to-face communication with a child’s parents, which is wonderful. Take the time to talk with your child’s teacher.
Also, if a child is served by more than one teacher, those teachers will need to communicate with both family and each other. It is most helpful to keep a notebook in the home that all caregivers and teachers can write into, forming a “daily journal” of the child’s educational progress as well as information shared about the child’s family life and interactions.
For in-home teachers, communication by telephone or email is not very frequent, largely due to the fact that you are at the child’s home so regularly. However, they are certainly useful at times. An email shared with a child’s whole team is a very effective way send a message and/or get quick feedback without calling for an impromptu team meeting.
What kind of information should parents provide to their child's new teacher? Since all children with autism are different, what is helpful for a teacher to know right from the beginning?
ANGELA: Likes, dislikes, parenting style, prior schooling of child, whether there are siblings, any major changes that may have occurred recently, how the child communicates, health issues.
JENN: Any and all information is useful! Parents know their children best and should give the teacher any information that might help. Filling out a reinforcer inventory, informing the teacher of any irregular sleep patterns, any changes in bowels, etc. will allow the teacher to adjust the child's day as needed. The parent should always inform the teacher of any medical issues the child might have, as well as how these issues are treated at home.
KATHY: As a teacher for a new child, I like to first visit the child and parents casually in their home. I’ll talk with the parents about their child—what they see as the child’s strengths and needs, what they are hoping for as a result of our sessions. During this time, I can observe the child in a non-demanding environment. Afterwards, I’ll work to interact a bit, observing responses and social engagement.
This initial visit would be the perfect time to share with your teacher: Any medical conditions that could impact learning in any way (i.e. allergies, digestive difficulties, etc.); any sensory sensitivity that you may be aware of: sounds, sights, tactile stimuli, etc.; and any behavioral concerns you may have.
In addition, I like to leave parents with a small questionnaire that I call a “reinforcer survey”. It asks to list your child’s favorites in a variety of areas: toys, food, TV shows, activities, etc. Whether or not they actually serve as reinforcers during a learning session is yet to be seen. Some will, and others won’t. However, having this input from the parents does serve as a springboard into a successful learning exchange with the child, until I come to know him for myself.
All three teachers agreed that communication is the number one factor for success when your child is beginning in a school setting or starting at a new school. Most of our children can’t communicate for themselves, so we need to make sure we are getting an accurate account of their progress by taking every opportunity to reach out to the teaching staff and encouraging them to do the same for us.
Other topics touched on during the Q&As included the importance of working with the teacher to inspire your child to become more independent, inquiring about special services that may be available to your child, and the fact that everything is a teaching experience.
I also asked the teachers what parents shouldn’t expect from teachers and the answers were quite realistic and understandable.
Angela pointed out that, “Parents sometimes take their frustration out on teachers [and] blame the teacher if the child doesn't make progress or if the child is not ready to move to a less restrictive environment…I guess I'm trying to say that a parent shouldn't expect a teacher to try to meet all the child's goals at once and that sometimes the child needs time to attain a goal while waiting to start on the next one.”
Jenn added, “Parents shouldn't expect the school to ’watch’ the child when he/she is sick, tired, or not feeling up to par. We work in an educational facility and if the child is not working productively, the teachers are not able to meet his/her goals. Additionally, during home services the parent should always be present in the home. I have seen many parents who use home hours as an opportunity to go grocery shopping or run errands. In these situations, the home care provider essentially becomes a ‘babysitter.’ Whether the parent is involved in the home services, receiving parent training, or just present in the home, the home care provider should never be left alone or taken advantage of.”
I think the one thing I would add to all of this good advice is this: fight for your child. Over the course of your child’s education you’ll have dozens of meetings and be told what’s good for your son or daughter. You’ll be told what is and isn’t possible for you to get for your child. And, sadly, you might be told that your child won’t become a productive member of society. Never take any of that as the absolute answer—research everything and have the strength to stand up for what you believe is best for your child. Don’t be the parent that just signs off on everything and expects the professionals to do what’s right.
I want to express my utmost gratitude to Angela, Jenn, and Kathy for their time and help with this article. Their devotion and love of their students gives me hope that there are others out there like them looking out for the growing number of children with autism needing well-trained teachers. As the rate of autism diagnoses continues to climb, the demand for proper education also rises. As Mikey said, “Watch out world, here we come!”
Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.
Topics:Education
