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The Things Unseen

November 21, 2011 in Community Wisdom by Robert Rummel-Hudson

I try not to take too many writing prompts from television, I really do.  But this week seemed to have it in for me.

A few days ago, we were watching Parenthood.  It’s one of those shows that Julie watches more than I do, but not one that actually make me leave the room.  (I’m looking at you, Glee.)  This week, however, a plot point caught our attention, like I’m sure it did with any special needs parent who watched.  That’s quite a few, I know; the show is extremely popular with a lot of parents of kids who are different because of Max, a little boy on the show who has Asperger’s Syndrome.  My daughter is not on the spectrum, but there are some universal experiences that come up on the show every so often (although perhaps less frequently than you might imagine).

This week, Max was a member of a math club decathlon kind of a thing, and his reports to his parents about the experience were resoundingly positive.  The other club members were his friends, he insisted, and when they laughed when he engaged in repetitive stimming motions, they were doing so because they were so impressed with his math skills.

His parents discussed the situation, and when his mother said that she thought the other kids were making fun of Max without him even realizing it, Julie and I looked at each other, slightly wide-eyed.  I said what we were both thinking.

“That’s one of my biggest fears with Schuyler.”

The episode went on to show the parents witnessing the actions of the other hop-in-the-ass punky kids, and in the end, the mother confronted the most egregious bully and let him have it. “Be a friend, not a bully,” she concluded.  Cue the applause by parents of bullied kids everywhere.

Another blogger asked if the mother was correct in directly confronting the bully the way she did and it’s a valid question.  But I think for many of us who worry about our kids when they’re the ones who are naive enough that they very well may not even know they’re being made fun of, it’s something of an academic question.

First of all, I think a lot of us might be asking a different question.  Not so much if we would intervene in a situation where we saw our kid being bullied, but rather how big of a stick we’d find before doing so.  Because seriously.

More than that, however, the reality of bullying is that it mostly takes place out of the view of parents and teachers.  We find out secondhand, and often after the problem has existed for a very long time.  For kids like Schuyler who have communication issues and for those who misread social cues and are generally trusting, I suspect some of it is never detected.  And for the parents of these kids, the fear of unreported and even unrecognized abuse is very real.  Like most of the things that scare us all, there is an exponential relationship between how much information we don’t have and the intensity of that fear.

It should matter to us that neither Schuyler nor her teachers at her new school have ever suggested that such a thing might be happening.  And while we have observed how Schuyler exists apart from most of her neurotypical classmates, we’ve also only ever seen them treat her with respect and affection.  Shouldn’t that be enough for us?  Absolutely.  When Schuyler told us that the boy on whom she has had her girly little eye for a year or so told her that she smelled nice the other day, should we have believed her, without wondering if he was being sincere or if it was part of something ugly that she might not even recognize as such?  Surely looking for that big stick wasn’t an appropriate response, right?

Yet there’s that internal voice, the one that protects and anticipates but can also smother our kids’ independence and pilot the helicopter if we let it.  And it whispers to us.  Well, of course they’re nice to her. You’re standing right there. Just imagine what they say and do to her when you’re gone…

So we try to laugh at our fears and trust that the world might just be a better place than we give it credit for.  And then the next morning, we see the report on the Today Show, about the ten year-old girl who hanged herself to death because she was being bullied in school.  Ten years old.  In fifth grade.  The teachers and counselors were having a hard time explaining it to her classmates because most of them had no real solid concept of death or suicide or irrevocable choices.  One girl said that she learned that death wasn’t something you could just come back from.  We’re left to wonder if the poor girl who made such a sad and terrible choice understood the price she would pay for escape.

As a parent of a child who is different, a little girl who is sensitive and trusting and vulnerable even as she is strong, and one who wants so very much to fit in, I can tell you that it is very much the things unseen that keep me up late at night, the things that might remain unrevealed until they have completely and irreversibly done their wicked work.  Some of those hidden monsters live in her different, broken, beautiful brain.  But not most of them. And not the worst of them, either.

Fears and Raising Children with Special Needs

October 26, 2011 in Featured, From Julia by Julia Roberts

When we are sharing here on Support for Special Needs about the unique challenges of raising kids that have differences there’s always someone to offer a different perspective. In doing so they make you think about how grateful you are there is someone who truly understands.

We all have different perspectives (obviously) on what to focus on, what motivates us to keep going each day (when the day kicks us in the teeth) and in what way we present our stories (public or private, positive or negative). We all have fears. Some of us share our fears; some have them but are afraid to share them.

During my son’s battle with kidney failure, a botched surgery, kidney transplant, and subsequent frightening depression I had many fears for his safety, for his general well-being, for his life. I didn’t voice my fears about him dying very often and I tried to shut them away during the period of time he was suffering but it was an underlying tone for me. My husband wasn’t able to voice it, think about it, or hear me talk about it either. It was a hard time to have those fears.

Some fears that I and other community members have…

  • -          Financial security, for us now and our children in the future. Keeping insurance, hitting maximums before our kids are 5 or 10 and the many out-of-pocket costs of taking care of kids with special needs. Many of us are  discussing  special needs trusts before our kids are five.
    -          Independence into adulthood. We want our kids to have as much independence as they are able to gain. We worry for their safety and happiness.
    -          Bullying. We worry our kids that their developmental, physical or mental challenges will be the target of bullies. For me, this started at kindergarten and continues…
    -          Change. For some of our kids change can be extremely difficult to navigate. Early on we learn that they don’t like natural transitions in the world and we grow to fear it because adjustments are difficult. For parents, sometimes change means a progression in a disease symptom, medication, treatment, or arrangement. Sometimes we fear it. Greatly.
    -          Acceptance. Tied to bullying of course, but acceptance is huge worry for many of us. We want our kids to grow up being able to experience typical things everyone wants to enjoy…friendships, inclusion in social events, feeling welcome in new  groups of people, sleepovers. Acceptance.
    -          Education. We want what is our child’s right. Reasonable access to education. We want a compassionate education team, we want services that will help them, appropriate classroom settings and people to treat us parents/caregivers as part of the team. We want everyone to help our kids reach their potential. Period.
    -          Abandonment. Sadly, the acceptance item on this list extends even to people who love us. Our kids aren’t “perfect” and some come with a lot of management; behavior issues and plans, problems with eating, dressing, toileting and speaking. We want the people who love us to try to understand that we’re doing our best and we don’t want you to abandon us because it gets rough. It gets rough a lot.
    -          Relationships. Fearing change in relationships because of the relentless needs. Along with that I fear losing myself. Period.

Community member, Michelle Howard said, “I hate the word fear. It has too much power over people.” While fear can permeate my subconscious it doesn’t rule my life. For me and most of the parents of special needs kids I have contact with letting fear rule us would mean that we have to pull energy from the job of managing the special needs our kids have and our time is too precious.

I’ve learned to live with fear. It’s something the forces me to grasp my reality and it’s sometimes what propels me to seek out and appreciate the joys.

Originally published in January 2011

Do Unto Others

April 8, 2011 in Featured, Future Glimpse by Kristen Witucki

Sixth grade was almost over, and I was looking forward to the summer, a long stretch of time during which I could read, write and think without my classmates’ harassment. Although this was almost definitely not accurate, I knew everyone hated me, and I would move on to seventh grade in the junior high, which meant a bigger school where even more people could hate me.

The spring morning was gorgeous, and the sixth grade was lined up in two lines: boys in one line, girls in the other. That time before the morning bell rang was the second worst time of the day. (The only time which was worse was lunch and recess. I had lined up lots of activities to get out of these times: newspaper, helping in the computer lab, art lessons, writing enrichment. But they didn’t work every day). I stood between the lines, talking to my male co-helper in the computer lab when a kid named Bryan Otis, who had made fun of me every day for the last two years or so, began to tease me by ordering me to get into the right line.

My mother knew about the teasing kids, of course, and her advice to ignore them flashed across my brain. I knew she was right, but … “Why would I want to, Otis?” I heard myself say. I was as startled as my classmates were, maybe even as startled as the kid who had suddenly been moved into the scapegoat position with one quick move.

“You call me my right name!” he shouted, “Or don’t talk to me at all!”

“Ok,” I told him, my serenity surprising me even more. “Why would I want to, … Bry-an?”

Then I stopped, my bravado gone. The bell commanded us to go inside. A few kids congratulated me under the clamor of our entrance. But I felt ashamed.

For so many years, I had tried to listen to my mother, to ignore kids who made fun of my blindness and geekiness. But I always ended up crying instead, giving them more ammunition. Still my mom’s advice stayed the same. She would advocate for any of my academic needs, but the social issues were mine to work out. After all, her telling the teachers to intervene would only make things worse for me. I was just as conflict-phobic as my mother, and yet here I was, starting conflict. I burned with this new power, a combination of pride and intense shame. And after that incident, the kids more or less left me alone. I moved on to junior high and made more friends, and oddly enough, the few relapses were easier for me to ignore. Just one outburst had helped.

Now as a parent myself, I wonder what to say if and when my son comes home from school with a story about being teased. Of course, I don’t want to advocate violence or even insults. I don’t want him to feel like he is alone in his feelings either. Perhaps I will tell him this story, letting him read between the lines: on very specific and desperate occasions, verbal retaliation is not always a bad thing. Or maybe by then, I’ll figure out another way to help him work it out.

Kristen Witucki is a writer whose work has appeared in The Huffington Post. She has been totally blind since birth. She graduated from Vassar College with a BA in English, a minor in German and certification to teach English in New York State.  To support herself, Kristen works in the Member Services Department at Recording for the Blind & Dyslexic. She has written a novel which she hopes someday to publish. She lives in Central New Jersey (where New York is the big city) with her partner, James, who is also totally blind, and with her guide dog, a black lab named Tad and with their new baby boy, Langston.

You can follow Kristen at her blog and on Twitter. We would also LOVE for you to vote for her to win a new Medela breastpump for her return to work next week. As Kristen says, “This pump is lighter and just as powerful, which is extra valuable to someone who uses public transit and a Seeing Eye dog with which to travel. I had to put up a picture and write a 25-word caption, so I used my caption to highlight the fact that blind people can and do parent. I would appreciate your sending this to any friends you have who are interested in promoting breastfeeding, promoting blind or nontraditional parents, or procrastinating.  It would also be wonderful for the fact of a successful blind parent to be shown to Medela and all the hospital professionals and other medical personnel who use the site.”

Squag: Connecting Kids with Autism through Social Networking

October 14, 2010 in Around the Web by Admin Dawn

Inside a Squag account

You know we’re all about connecting here at Support for Special Needs, which is why we were so intrigued when we learned about Squag™, which is a social networking site specifically for kids with autism. We checked out their web site and walked away knowing we wanted to interview the founder to learn more. The following is our Q&A with Squag™ founder Sara Winter. (You’ll love the story behind how the site got its name!)

Can you tell us how you got the idea for Squag™?

I have a spectacular eleven-year-old nephew with autism. I’ve been his aide at home and at school almost every day for the past nine years. One day at recess, something happened on the basketball court; I could see that there was a social “mishap”, and things were moving too fast for him to process. It was heartbreaking to watch him fall apart in front of his friends. Once the bell rang, and we had a chance to be alone, I suggested that he try to use my blackberry to articulate his feelings to his father. It was incredible to see how differently he was able to express himself! Not only was he able to communicate his version of what had happened, but he was also able to process his father’s responses enough to calm down on his own. At that moment, I realized that a unique technology should be developed to support kids on the autism spectrum (and their families and support networks) to help them break down the big idea of friendship and to let them know that they are not alone.

I did an immense amount of research on depression in kids on the autism spectrum, particularly the catastrophic and long term effects of bullying. I’ve been lucky enough to work with so many unbelievable, inspiring and engaged people in the ASD community these past nine years. I reached out to all of them, and together, we built Squag™.

How did the name came about?

Squag [skwag] was one of my nephew’s first words back in the earliest days of ABA therapy. It was the word he used for “square”. My sister was the one who thought of it during our earliest brainstorm sessions. It conjured up such a vivid memory of where he had once been and how far he’s come – we’ve never even considered another name.

What did you know would be vital to make it what you wanted it to be?

Security. Security. Security. It was our first, and still remains the most paramount priority for our company. We addressed it on every level in order to make Squag™ work – from the way we engineered the software, to the way we advertise and reach out to our community. All of our security features are listed on our site, in an accessible, easy-to-understand way:

How does Squag™ work? What is the parental component?

The parental component is 50% of the entire piece; the app does not work without parent involvement and vice versa. The parents are the members, and create an account for their child. They add content for their child (and only their child) to see in their own personal Squagpad™. Parents can update it as often as they want, and their son or daughter uses this content to create original thoughts about themselves.

Once their child is using the app, there is a reporting section where parents have access to the details from every conversation. Parents can monitor everything easily; it is very organized and easy to understand.

Why do you feel children should have the chance to understand and utilize online social networking?

Whether we like it or not, the social media train has left the station. As kids get older, there is a lot of pressure to be part of a social network. I am the least tech savvy mom there is (I could barely send an email before I started this process two years ago!) but I strongly believe that in order to keep up with our kids we have a responsibility to familiarize ourselves with this “beast”.

Social networking has become a lifeline for this new generation of ASD parents; it’s put them in touch with the latest resources and ideas in autism, but more than that, it’s given them connectivity to someone else going through the same thing in real time. We feel out kids should have the opportunity to benefit from that support system as well, in a safe, monitored environment where they are free to be themselves and to know that they are not alone.

In what ways is Squag™ different from traditional platforms (facebook, twitter)?

In a lot of ways, Squag™ is the opposite of Facebook or Twitter. To me, the latter is more about acquisition and sharing, while Squag™ has been designed specifically to slow things down and reflect privately. Squag™ is always one to one, with no file sharing of any kind; they never leave the app, much like a video game. The idea was to take the best parts of social networking, customize them for our kids, and leave the rest.

What kinds of things can kids do in Squag™? How do they connect with other kids?

Each user has their own individual Squagpad™ where they can listen to music, look at photos, and keep a journal. As they scroll over their room, they see tangible and encouraging messages from their parents to use as a springboard to create original thoughts about themselves. There’s a mirror in the pad where they (and only they) can see themselves; the idea is to take the time to self-reflect and remember who they are; their likes and dislikes, hopes and dreams, things they’re proud of etc. before reaching out to find a peer who shares common interests.

Very soon, we will be adding yoga videos and music lessons in the privacy of the Squagpad™, all to promote regulation, mind/body connection, and sense of self.
Once their Squagpad™ is the way they like it, they open the door to find a friend with common interests. They request to “squag”, the two pads pop up on the same screen, and all of the original thoughts they’ve added about themselves become available to spark conversation.

How much is a Squag ™membership? Are there different levels?

The Squag™ membership is $7.99 per month with 10% of the profits going directly to local and global ASD charities.

If there’s anything else you’d like to let us know, that would be great.

We built this application because we believe that kids on the autism spectrum are capable of anything if they have access to the proper support system and an environment that reflects their needs. As we build our community, we look forward to having member involvement, so that as we evolve, we will continue to offer a fluid dynamic little corner of the web that reflects a group of kids living in a world that isn’t always as exceptional as they are.

You can also follow Squag™ on Twitter: @squagdotcom

And like them on Facebook.

When Bullies Target Autistic Kids

October 5, 2010 in Insider Insight by Admin Dawn

Why do some kids always get bullied and what can parents do? We spoke with Kari Dunn Buron about “provocative victims,” kids whose social challenges make them an easy target for bullies and whose behavior sometimes make it hard for adults to see that they are being victimized.

Kari has been working with students with autism for over 30 years. Kari is one of the founding members of the Minnesota Autism Network, a statewide network of ASD educational consultants. Kari serves on the Professional Advisory Boards for the Autism Society of Minnesota, Lionsgate Academy and for the Autism Asperger Digest. She is the co-author of The Incredible 5-Point Scale, and the author of When My Worries Get Too Big, A 5 Could Make Me Lose Control and A 5 is Against the Law! (2008 ASA literary award winner). Kari is also the co-editor of a new textbook for educators titled Learners on the Autism Spectrum: Preparing Highly Qualified Educators and recently created a new magazine designed for students with ASD called The Social Times.

What makes some kids the target of bullies?

I find that the best way to understand this is to understand what social cognition is and how a lack of good social cognition can lead to bullying. Social cognition is the skill of social thinking, social reasoning, social communication and social understanding.  Individuals with autism have difficulty with this and it is really the hallmark of autism spectrum disorders.  Kids who do not read social cues or nonverbal social messages do not adjust their behavior to “fit in” and that makes them stand out as different.  A person with ASD doesn’t even have to say anything, often their own nonverbal messages communicate this difference to others (facial expressions or other body language).  Social competence is highly developed even at age 5 so even very young children can recognize this difference in others.  Even children with Asperger Syndrome are soon recognized by other children as different in some way even if they are not sure what that difference is.  A child with autism is socially vulnerable and bullies are attracted to those who is different and vulnerable.

Sometimes it is difficult for adults to “like” provocative victims; how can parents effectively advocate for their child’s protection with an adult who is having trouble seeing that they are being targeted?

Again, one needs to know what they are observing.  How we think about what we see determines how we choose to address it and what strategies we choose to use.  If an adult observes a child with autism repeatedly making the same social blunders, they might begin to think that the child is not trying hard enough and so is somehow to blame.  If a child is difficult to understand and motivate, an adult might find themselves resenting the child.  The adults who support and educate children with autism need to understand that social cognition is a learning disorder.  Social learning in typical children happens so early and so naturally that we don’t even have to think about teaching it.  However, children with ASD do not develop these skills in the seemingly seamless way that others do.  These skills need to be taught and the supportive adults need to understand the nature of a social disorder, that it stems from a lack of skills.  We are learning a lot about how to teach those skills but the first step is a true understanding of the problem.

How can adults address the provocative victim’s behavior without excusing the bully’s behavior?

To say that bullying is normal behavior is not really to excuse it but to acknowledge that it happens.  Nobody likes to be bullied but there are children who are particularly vulnerable to teasing and who can be terribly damaged emotionally.  Children with ASD do not understand people and they are trying to survive in the ultra social environment of the school without the skills to understand, negotiate and manage social situations.  I don’t think it is too far off to relate teasing a child with autism to tripping a blind child.  We are asking the child with ASD to handle a situation they are not equipped to handle and for that reason, they need protection.  I recommend structured social settings that are more easily monitored.  Recess can be a nightmare without caring and understanding adults present to help solve the social problems or even pre-empt them by anticipating them.  Address the provocative victim’s behavior by offering more structure and support – don’t throw him in the deep end of the pool with no life jacket.  Dr. Nancy Minshew, a noted autism researcher, once said that if a child is failing to fit in after a year of school, there is a problem with social cognitive development.

Can you explain a little bit about the 5-point scale you’ve developed?

It is based on a systemized learning style – teaching social and emotional information using a system rather than conceptual language. The 5-point scale can be used to help teach the person with ASD to recognize different levels of stress and anxiety.  The scale visually breaks down a person’s responses to stress by labeling each level with what the behavior looks like, what the level feels like, and what stress reduction exercise or routines can be used to reduce the stress level.  The person with ASD and his caregiver can begin to think in terms of ‘being at’ a level 1, 2, 3, 4, or 5 using the scale as a visual prompt.  After much practice and patience, the person can be prompted to bring their stress level down from a 4 to a 2 using the scale as a guide.  The 5-point scale is a cognitive behavioral method of teaching that attempts to teach the student how to recognize their own internal emotional states and then to practice successful responses to those emotions.

You can see the scale itself including examples of its use by clicking to Kari’s web site here!

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