Archive
IAN’s Bullying Survey: Addressing a Troublesome Issue
By Connie Anderson, Ph.D. Community Scientific Liaison, IAN Project at the Kennedy Krieger Institute
The Interactive Autism Network (IAN) has launched a national online survey on bullying and children with ASD to begin to address this troublesome issue in the lives of children on the autism spectrum.
As Community Scientific Liaison for this national online autism research project, I hear from families all the time, and bullying is one concern they raise often. Just to make it through a school day, they tell me, a child on the spectrum may have to contend with sensory issues, social challenges, and attention problems. Add bullying into the mix and what was challenging can quickly become impossible, leading to a sense of isolation and failure. I hear of children tormented at lunch or on the playground, when a personal assistant (if any) may be taking a break. I hear of children who are provoked into meltdowns or aggressive outbursts by other children who know how to push their buttons, maybe by attacking a cherished interest. (“Pokemon is stupid.”) I hear about cases where children with meltdowns are accused of being bullies, and may suffer consequences like suspension from school as a result.
I’m also the mother of a teenager with Asperger’s, who has had his sweatpants pulled down around his knees in Tech Ed class, and been tormented at lunch until he wants to hide in the Special Ed Resource room rather than go to the cafeteria. I’m the friend of a mom who decided to home school her daughter with ASD after constant bullying made school a place so wrought with anxiety she could no longer function there.
These stories are all too common. Anecdotes from adults with ASD, children with ASD, and their families indicate that individuals on the spectrum may be especially vulnerable to bullying, and a few small studies have provided some evidence of this. Now, the online Bullying and School Experiences of Children with ASD Survey will collect more in-depth information on a variety of bullying situations from a large number of families to explore the extent of these problems in the lives of children with ASD.
I hope you’ll spread the word about the survey to all who may be interested.
Learn more about the Bullying Survey.
Read an article about bullying and children with ASD.
Family Services Office Hours – 10.12.11
Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.
Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
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In Their Own Words – Today
This ‘In Their Own Words’ is by Cheairs Graves, who shares her life at Redefining Typical. It through writing and pictures that she shares her journey about Dawson, her son with autism. It is the marriage of the two that makes sharing her journey complete. You can find her on Facebook here.
She tries to play with him.
He walks away.
She tries to talk to him.
He does not answer.
She tries to calm him when he gets upset.
He pushes her away.
Then he looks at her.
He smiles.
He reaches for her hand.
She takes it.
She smiles.
And they walk.
And as I watch them.
I remember words.
Words that came from my father as he would send us off to school.
With a twinkle in his eye and a nod of his head my dad would say, ”Cheairs remember-Today is the first day of the rest of your life.”
So hand in hand my son and daughter walk off to school.
And with a twinkle in my eye and a nod of my head I whisper, ”Mae Mae and Dawson remember-Today is the first day of the rest of your life!”
I breathe.
Today-Yes- Today!
Copyright © cheairs graves August 25, 2011
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Creating a Special Education PTA
Community is critical for parents of children with special needs. Community gives us critical emotional support and provides information about our kids’ therapeutic, medical, and educational choices. Our communities have the experience and knowledge to weigh in on our decisions; its members empathize and help us keep going when times are hard, and they rejoice with us in our children’s accomplishments.
It’s not always easy to connect with parents like us. These kids we love so much are vulnerable, they need us – and the demands of our extra-intense parenting can leave us feeling drained and isolated. But if you can muster a burst of energy and round up a few like-minded individuals, then you can create your own community: by forming a Special Education Parent Teacher Association, or SEPTA. That is what we did when we helped found SEPTAR, the Special Education PTA of the Redwood City (California) School District.
Most traditional PTAs are attached to a single school. We found that this model didn’t work for us, as most campuses in our district had only one or two special day classes, or a few students in full inclusion. So we made SEPTAR district-wide, including any family with a child with special needs, from Early Start (age three) through eighth grade. We also reached out to
teachers, therapists, staff psychologists, and community leaders.
As parents, we already had a vision of support, education and community. Forming a new PTA also takes resolve, district support, and a lot of attention to detail (at least in the beginning). But it was worth it. SEPTAR is now in our fifth year. We have become a go-to resource for our special education families, with a parent support group, a speaker series, and social events such as weekly park playdates and “Break from Winter Break” jump house parties.
We have the full support of our District leaders, and put a lot of effort into maintaining open communication, in working with administration rather than against it. And our special education teachers feel supported; we provide grants to help our educators go to seminars, or get our kids the equipment they need. We host a bi-annual conference for parents and professionals on topics that include social skills development, and technology and communication — to help
parents get informed, and contribute to our childrens’ educators’ professional development.
Our name is out in the community now: we hand out business cards, and we attend the local Education Foundation events. During the last election cycle we even hosted a moderated debate by the school board candidates.
Below is a basic how-to for starting a SEPTA. It may look
daunting, but we somehow managed to do all this in less than six weeks:
- Find at least five people who share a common vision, and are willing to
pay dues plus meet together many, many times. You can find these people in your
childrens’ classrooms, or on local email parenting boards. Ask your child’s
teacher, OT, PT and behavior specialist too! - Contact your district’s
head of Special Education and ask how they would like to be involved. You could
also contact someone from the Board of Education. - Select a secretary and
a chair from among this first group to undertake responsibilities until officers
can be elected. - Organize temporary bylaws and nominations committees (we
recommend organizing a communications committee as well). - Have your
chair contact the local district PTA president, or a state representative –
easily done by going online, and searching for your city name and “District PTA
President.” - Draft bylaws, working with the local state PTA
representative the district PTA president helped you locate. This person will
ensure that you follow state PTA guidelines. - Determine officers, meeting
times, and dues amounts. - Set a date for the organizational meeting to
actually form and charter the new PTA unit. - Have the nominating
committee draft a slate of officers for the new PTA board. This might happen
quickly, or it might take a while if you need to search for people to fill
certain positions. At the very least, you must have a president, secretary and
treasurer. - Set a date for the meeting, and get this information to
as many parents as possible. This is why you want to have a communications
committee, which can determine the best channels for communicating to as many
people as possible. We announced our first meeting in the local paper, via
flyers and emails to the schools, and via email to local special needs parenting
groups. - At the organization meeting, follow parliamentary procedure. The
original committee chair should call the meeting to order and state that the
reason for the meeting is to organize a new PTA. Then a motion to start a new
PTA is made and a vote is taken. If the motion passes (and we’re sure it will) a
break in the meeting is taken and those present at the meeting join the
PTA. - After the break, the newly formed PTA elects officers.
- The
new PTA president takes over the meeting, presents the bylaws, and has the
association vote on adopting them. - The new president may then add other
items to the agenda. - When the meeting is over, the new president needs
to sign a few papers which make official the new charter.
When the paperwork is complete the state representative who guided you
through the process will call the State PTA to get the official Employee
Identification number (EIN) so the new PTA can open a bank account and begin the
actual work of the PTA — making a difference for your local special needs
community.
At every SEPTAR association meeting, we have parents
lingering, talking, conspiring, connecting – taking part in a community that
understands them and their kids, and wants to support them fully. With a little
organized structure, our PTA provides resources, camaraderie, and the
opportunity to come together as one community.
—
Please keep in mind that PTAs are non-profits, which must meet certain criteria to maintain
their non-profit status — so please check with your State PTA before randomly
filing taxes and signing checks!
- More information can be found at http://www.pta.org
- National PTA Information Center at: (800) 307-4782, or info@pta.org.
In Their Own Words – Will’s Angel
We recently received the following e-mail and poem submission:
Two years ago my son had a very trying school year. It was riddled with setbacks and aggressive behaviors. This year was the opposite. He and his classmates were introduced to another new teacher but his year was quite different. She inspired my words below, as I imagine the feelings through my son’s eyes. I wanted to share it with you.
Before we met, I walked a world,
Couldn’t see quite eye to eye,
My mind held back ten thousand words,
Like wind against the tide.
You found a way to speak to me,
You found your way inside,
You called me out to play with you,
You found me where I hide.
I like to do the things you ask,
I try so hard each day,
I like it when you smile at me,
It tells me I’m okay.
You teach me not to be afraid,
I watch you every day,
Your face says you are brave and kind,
And fear won’t win today.
You gave a gift I can’t repay,
You wrapped it gracefully,
My mom says you reached in your heart,
And gave me dignity.
I think that there are angels now,
But the right time it must be,
And I thank God for knowing this,
And for sending mine to me.
This “In Their Own Words” poem was written by Julie Jones, a mother who has a son with autism.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Just Like Them
This is a guest post by Nora Rubovitz, Autism Speaks Family Services Project Manager, and Ali Hines, Family Services Associate Manager of Communications.
A few months ago, the Family Services team received a call from a fourth grade teacher at PS 7 in Brooklyn. Through a “Penny Harvest,” her class had raised $900, $300 of which they decided as a group to donate to Autism Speaks. Last Tuesday, we traveled out to Brooklyn to visit their classroom and accept their generous donation in person.
“This is Nora and Ali from Autism Speaks!” Mrs. Pavane announced to the 100+ students in the auditorium. A little girl in the class walked up to the microphone to announce that she had helped her class choose Autism Speaks because her older brother is on the autism spectrum, and it would mean a lot to her family. We walked up and thanked her very much for thinking of us and sharing information about autism with her class.
“Does anyone know what autism is?” we asked at first. We got little to no response. We didn’t think reciting the DSM-IV criteria would really captivate the fourth grade crowd, so we decided to read the story “Since We’re Friends” so they could understand a bit about the issues faced by children with autism. The book conveyed to our audience that children with autism are just like them; they are fun and wonderful friends who might sometimes need a little bit of support. Much to our surprise, given our recollection of our attention spans at that age, the class seemed fascinated by the story. A boy and his friend with autism were swimming, playing baseball, running around and having fun! The only difference was the few times the boy needed to push his friend a little to make sure he was comfortable and calm. Through reading the story, what may have first sounded to them like a scary disease now came across as something that affects lots of kids. Kids just like them, who they can help, simply by being their friend.
By far the highlight of their morning came next. We decided to play a video filled with pictures and facts to help the class to see a little more about autism. We figured the shorter the video the better for this age group, so we chose a two-minute video often used at Autism Speaks events. We know the kids loved the pictures and were intrigued by the facts displayed, but we could really see their enthusiasm based on the loud claps and high voices coming from the audience while Alicia Keys “No One” played in the background of the video. They were up on their feet singing every word while watching our video. We think Mrs. Pavane learned during our video that all she needed was a little Alicia Keys playing in her math class to really get the group going during multiplication lessons!
At the end of the presentation, we took questions from the group. Hands flew up immediately when Mrs. Pavane asked who would like to ask us something about autism. Is autism contagious? Can you only get it when you’re a little kid? How can I help someone with autism? We were floored by how interested this group of 10-year-olds was in learning more about autism, and how much they wanted to help. We handed out Autism Speaks awareness bracelets, and smiled as the kids walked out wearing their puzzle pieces with pride, armed with a new understanding of autism. One young boy held back from the group as they walked out, and turned to us with a dollar bill: “Here is one dollar for autism.” That, in itself, proved what a wonderful morning it had been. All it took was a simple story and a music video to teach a group of 100 4th graders about autism, and to inspire them to help make a difference in the lives of kids with autism. Kids who are just like them.
