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Sunday, November 29, 2015

The Secrets of Autism

Mark and Bonnie Zampino (second and third from the left)
Re-posted from Parentadvocates.org:

My Son Has the Kind of Autism No One Talks About by Bonnie Zampino
The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We light it up blue every April and pat ourselves on the back for being so aware. But we aren't aware.
           
My Son Has the Kind of Autism No One Talks About
Huffington Post, Posted: 09/25/2015
by Bonnie Zampino
LINK

Like most parents of children with autism, I have been reading about the family in California who is being sued by several families in their neighborhood. The lawsuit contends that their child is a public nuisance because of his behaviors that his parents failed to fix.

One of the plaintiffs in this case stated "This is not about autism. This is about public safety."

But he is wrong. This is absolutely about autism. It's just not about the autism people hear about.

The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We light it up blue every April and pat ourselves on the back for being so aware.

But we aren't aware.

Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.

This is the autism that no one talks about. This is the autism that no one wants to see.

We aren't aware.

One of the plaintiffs said "We're not upset about him being autistic. We are concerned and upset about his violence (toward) our children."

There is no way to be upset by this child's behaviors and not be upset about autism.

Autism and behaviors go hand-in-hand. Why? The behaviors are communication. Individuals with autism often can't communicate in a way that typically functioning people can understand. So they do things to get their needs met. And often the things they do are scary and violent.

We aren't aware.

My son, who is the same age as the child in this story, was extremely aggressive when he was younger. He did all of the things that the child involved in this lawsuit did. My son ran after other children on the playground just to push them down. He hit. He kicked. He bit. He pulled hair. And I never knew what was coming. For the longest time, I would flinch when he ran up to me...I didn't know whether he was going to hug me or hit me. Can you imagine, as a mom, what that's like? To flinch when your child runs to you?

We aren't aware.

Because I didn't know what my son was going to do to other children, we stopped going to the park. We stopped going to the Mommy and Me class at the library. We started going to the grocery store at 6:00 a.m. when most people weren't around. He didn't go to daycare but had a sitter at home so he wouldn't be around other kids in a daycare setting. I essentially isolated him in order to keep other people safe. Can you imagine what it's like to be a mom and not be able to take your child to the park? Or have your child attend birthday parties? Or have play dates?

We aren't aware.

Because of my need to isolate my son, I also isolated myself too. I watched from my window as other moms in the neighborhood sat in their camp chairs and chatted while their children played. I couldn't join them because my son couldn't be around the other kids. Once a mom asked if my son could come to their house and play with her son. Can you imagine what it was like to feel so excited and then feel so ashamed when, after explaining my son's issues to her so she would be aware, that invitation was rescinded?

We aren't aware. Not at all.

But we can be. We can open our eyes and understand that autism isn't all about the high functioning child who is "quirky" but OK to be around. Autism isn't all about the six-year-old who can play Piano Man better than Billy Joel. Autism can be hard. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.

Once we become really aware, lawsuits like this won't happen. Why? Because instead of putting blue lights on our front porches, we will go outside with our kids and we will help them play together...typically functioning kids and kids with autism. We will get to know our neighbors and we will embrace the children with behaviors and embrace their parents along with them.

We will learn what things trigger our child's classmate who has autism so that we can help the children interact while avoiding things that will cause aggression. We will be a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them. We will work on teaching our children not to hit and how to avoid being hit.

The parents involved in this lawsuit, on both sides, need to do more. More education, more understanding, more inclusion and more involvement.

Now tell me, is autism the real public nuisance?

We can become aware ... if we really want to.

A Special Space hosts special dedication

LINK
August 22, 2012
By Michelle Horst - Journal staff writer (mhorst@journal-news.net) , journal-news.net

CHARLES TOWN - In her space dedicated to providing out-of-school care for children all along the autism spectrum, Bonnie Zampino welcomed friends and community members to the grand opening of the sensory-designed classroom Tuesday morning.

Upon searching for a care provider for her son, Zampino discovered her community, and none close by, had a center that could provide care tailored to the needs of children who fell among various points on the autism spectrum.

"There are a lot of places that have opened schools, and some places have tried to integrate child care with therapy, but they have failed. I think that's because it's just too much," Zampino said earlier in the summer.

The space was once used for activities at Zion Episcopal Church on East Washington Street, and has been developed into what Zampino described as "therapeutic because of the environment."

The special parts of the space include a music area where all equipment is headphone-compatible so other children are not stimulated and disturbed; an area of technology that includes a laptop and Wii system with sport games and a bicycle to tune fine and gross motor skills; and an educational game cafe.

"We have a lot of emotional recognition games because social skills are often an issue. We also have a book-nook for calming sensory and an art area," Zampino said.

A Special Space will welcome children ages 5-12, as well as preschool students. Charles Town Mayor Peggy Smith cut the ribbon to the new center Tuesday morning, and it will open for business Monday.

"I'm proud to have A Special Space in the community. The need was here, and it's been filled," Smith said.

The center has focused on a 1-to-6 teacher-to-student ratio, and plans to enroll more children before the opening day.

"We want the community to understand, this is therapeutic because of the environment, and our caregivers are trained, but this is not just special needs. It's for all children, and it's all about inclusion. This could be for someone who just is anxious or a child who is shy, or a child who is just fine," Zampino said, adding that if a parent had the opportunity to choose a class of 30 or 15 for their children, the better choice would be the one with the lower student-teacher ratio.

Dr. Belinda Mitchell, assistant professor in the department of education at Shepherd University, who is working to develop a master's degree program in special education at Shepherd, said that by being a parent and an educator she has seen the need for A Special Space in the community.

"As an educator, it's difficult to know that something the students worked on that day in school, because they are not in the right place for afterschool care, what they learned can fall apart in the afternoon," Mitchell said. "A Special Space provides an opportunity to parents, teachers and children to collaborate the day care piece into the puzzle," she said.

More information on A Special Space can be found online at www.aspecialspace.org.

- Staff writer Michelle Horst can be reached at 304-263-8931, ext. 138.

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