“Because I Have Autism” – Child Of Mine

Child of Mine, a guest post by Alysia.

Last week I got an email from one of Howie’s teachers.  She explained that they had been working on a math assessment test about money and coins.  The directions were to count the money and show your work.  The teacher said that Howie had refused to show his work. His explanation was that he didn’t have to “because I have autism.”

She wrote that they had worked through the refusal by reminding him that this was for his third grade teachers and while she knew he could do it in his head, he needed to show his new teachers that he understood the work.

Now Howie has never been a big fan of reviewing concepts.  “I already know how to do this!” is a frequent refrain when doing assessments or review work.  But this was a new wrinkle.  He had never refused to do work because of autism before.

I wrote back and said I was kind of stunned by all of this since we’ve never said anything like that to him or around him before.  We’ve always talked about autism – and specifically his autism – in a positive light.  Talking about the gifts it brings him.  Lately we had been discussing how there are times when different brains have a harder time with some activities, and that’s why sometimes he needed to leave the room to take a test, or use his headphones or have a sensory break.  But we’ve never said he couldn’t do…anything.

I expressed my surprise at his statement and said I would talk with him about it.

Later that afternoon, Howie and I were sitting across from each other on the floor of our living room.  His iPad was on his lap and he was creating his newest world on his Blocksworld app.

“Hey bud’” I said. ” I heard that you had some trouble working on your math assessment today?”

“Yeah.  But the fruit snacks helped me get through it.”

“What was hard?”

“I had to write it all out but I knew the answer.”

“Your teacher said you told her that you couldn’t do the test because you had autism?”

” I said I didn’t have to do the work because I had autism,” he said. He didn’t look up at all.

“Well, autism isn’t an excuse you know,” I said. ” You can do hard things. But you still need to do the work.”

“I didn’t say I couldn’t,” he said.  “I said I didn’t have to.  I didn’t have to show my work. I could see it and do it in my head.”

I sat there and just looked at him.  His eyes never left the iPad, fingers moving and swiping and tapping as he built a cityscape for his Blocksworld cars to drive through.

Paperlace-buttefly-150x150Not an excuse.

A reason.

Not a negative.  A positive.

Not can’t do. Don’t have to to understand.

Part of his gift.  He could see it in his head. So why do the extra work?

He wasn’t trying to get out of doing the test itself.  Just the showing his work.  And not because he didn’t want to.

Because I didn’t have to.

He was actually advocating for himself.

“I understand now,” I said.  “But you know there will be times when you have to show your work, even when you can do it in your head.  It’s important for other people to see what you see.”

“I know,” he said. ” And the fruit snacks were really good.”


“The things that make me different are the things that make me ME!” – Piglet quote on the wall of our sensory gym.

In our world, autism isn’t and won’t be an excuse.  We’re never going to teach him he can’t do something because of how his brain is wired.

But it can be a reason why things are hard. Or, in this case, easy.

Maybe it’s semantics.

This is why we felt it was important that Howie knows and understands his diagnosis. So he could say, “I see this differently because my brain is wired differently.”

He knows he leaves to take tests in a quiet space so he doesn’t get distracted.  We are working on helping him understand that his aide is there as a “coach” and “interpreter” when he needs help.

But he also needs to know that we will listen to what he is really saying and doing and go beyond the specific words that he is using  in order to make sure that we understand their meaning.  Because here he was, in his way, appropriately advocating for himself.

It’s our job to make sure we hear him when he does.

 

Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you’ve designed
Oh yes, sweet darling
So glad you are a child of mine.
Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine.” – Child of Mine by Carole King

This guest post was written by Alysia of Try Defying Gravity and is republished here with permission.

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The Wisdom of Over 60,000 Parents of Children with Autism

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It’s been a few short years since we launched MyAutismTeam with just 30 parents in the San Francisco Bay Area.  Today, MyAutismTeam has grown to more than 60,000 parents, making it the largest social network in the world for autism parents.

At MyAutismTeam, we believe that if your child on autism spectrum, whether they are young toddlers or young adults, it should be easy for you to connect with and get perspective from other parents just like you.  You’re not alone and you don’t have to reinvent the wheel.

The infographic below represents just a sample of what you might learn from other parents on MyAutismTeam.

MyAutismTeam is a  social network for parents of children with autism. It's free to join.

It turns out that the most common therapies families have tried also tend to be the ones viewed as most useful by the parents (many of whom have tried dozens of different therapies).   Of course given the breadth of the autism spectrum, it is not surprising to see that the most common therapies sometimes differ based on the sub-diagnosis or specific development needs of the individual with autism.   On MyAutismTeam you can search for other parents whose children share similar development needs as yours, are the same age, same gender, and even those who might live nearby.    It’s great to connect with them and share experiences.

 

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The Hardest Part of Autism Isn’t Him – It’s Other People

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lauren-casperPart of the problem with “disabilities” is that the word immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or can’t talk about their feelings? Or can’t manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the truly crippling disabilities. -Fred Rogers

This is a special guest post by Lauren Casper. It is the first in our series of stories of encouragement for autism parents.

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Last year a friend asked me if it was hard and how I manage and if I ever just want to lose it. “It” being this whole raising a child with autism thing. Of course it’s hard and of course there are evenings when I collapse on the couch or cry in the bathroom. But isn’t that true for all mothers? How do I manage? About the same as all other moms, I guess. I drink coffee every morning and hide chocolate in the sock drawer. But then she asked another question…

What’s the hardest part?” And I didn’t even have to think about it. Other people. When you’re dealing with an invisible special need, strangers don’t know about it. As much as I sometimes want to, we don’t pin a sign to Mareto’s shirt explaining his autism. So other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments and just overall judgment. I can feel it in the store when Mareto’s getting upset and I have to hide in an empty aisle to calm him down. Or when he can’t sit at a table in a restaurant. Or when he blurts out, “Watch out for Diesel 10!” when someone says hello.

But even the people who aren’t strangers can be hard. It’s not intentional, but unless they’ve had a lot of experience with autism, most people are largely uninformed. I get it, because up until two years ago, so were we! So when Mareto licks the wall, or laughs at inappropriate times, or sniffs random items, it can be awkward. The look of shock can sting, and I remember again that this isn’t everyone’s normal.

laurencasper These are all my issues, though. Because Mareto is unaware of these reactions, and most of the time they aren’t even directed at him. They’re directed at me. One evening my husband, John, looked at me and said, “I feel like people are thinking two things when we’re out as a family: your kid is bad and you’re bad parents.” That’s how it feels sometimes. It feels like people think we’re lazy or I’m not doing my job well and if I just tried harder he would behave differently. I felt so guilty when I realized that one of the reasons I was so excited about my other child, Arsema, being potty trained, was that people might now see that we actually are capable of potty training and it isn’t laziness that’s keeping Mareto in diapers.

But do you know what’s even worse? When you take your kids to the playground and they’re having a blast. Your little boy notices a group of older children and runs to play near them. He bends down to pick up a piece of bark and his shirt rides up, exposing the top of his diaper above his pants. And all the little kids start laughing and pointing and saying, “Look! That boy is wearing a diaper!” Or when the 3-year-old looks at you over gingerbread houses and asks why your precious, funny and brilliant little boy is so dumb. Or when you realize he’s being physically bullied because he hasn’t learned the skill of tattling yet. These are the things that make me sick to my stomach. That moment when you realize people are going to stop sneering at you and start sneering at your child hurts deep down in a way that takes the breath out of your lungs.

Now that Mareto is growing older, the differences are more apparent. They can’t be waved away or explained as typical toddler behavior. It’s a little more noticeable when a child the size of a 6-year-old isn’t potty trained. It’s a little harder to protect him from the bullies of the world. And that is now the hardest thing about autism — my inability to shield him forever from judgment, ridicule and mean children and adults.

And the thing that makes it even more mind-boggling is that he is the sweetest boy you could ever hope to meet. He cares deeply about other people. He “rescues” his sister from nap time. He comforts crying children. He loves animals. He is friendly and kind and has fun interests. Yes, he has some hurdles in life that other people don’t have. But he also has a lot of awesomeness that other people don’t have. It comes to him naturally.

So are the endless sleepless nights rough? Yes. Changing a 50-pound boy’s diaper isn’t my favorite. We’ve been working for nearly two years to get my son to move beyond his three foods. But those things don’t matter much. laurencasper Those would be the hard parts if we lived in a world where I knew my son was unquestioningly accepted — and not just accepted, but celebrated for who he is. If we lived in a world where people didn’t pass judgment so easily and were quick to love all people regardless and because of their differences, and taught their children to do the same… then the hardest parts of autism would be much different. But we don’t live in that world. And as much as I want to keep him close by my side and never leaving the safety of our home, I know I can’t. He has far too much to offer (and teach) the world for me to do that. He has a joy and innocence and compassion and love and a curiosity that is infectious. The world needs him and more people like him.

This post originally appeared on LaurenCasper.com and Huffington Post.

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Two Tips for Finding & Working With a Great Occupational Therapist for Autism

childMost parents of kids with autism constantly ask themselves, “Am I doing enough to help my child?”  And yet, thousands agree on a specific type of therapy that they feel has helped their child most: occupational therapy.  We’ve asked over 40,000 parents of kids with autism on MyAutismTeam “What therapies, if any, work best for your child?”  Out of all responses, the number one answer was occupational therapy (OT).

When we explored this area more with our parents to find out why OT was so useful, and how to pick the right OT for your child, two tips surfaced:
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Music & Autism: How Music Helped One Mother Connect With Her Son

music “Music is the shorthand of emotion” – Leo Tolstoy

After her friend suggested that she join MyAutismTeam, Amy Pentz, of Riverview, Florida, used her phone to check it out. On the homepage of the social network for parents of kids with autism, she played the MyAutismTeam video tour, while her almost-3-year old son watched a movie. When the theme music for the video tour began, her son’s ears perked up, he turned around, began dancing, moving his arms and feet, smiling, making eye contact, and for a moment, “Autism didn’t exist. The music was so cheery, it made him happy listening to it,” says Amy, the self-described stay at home mom.

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Amy joined MyAutismTeam to get “a little help, support and camaraderie” from other parents who’ve been in her shoes. She wanted to be connected to those who understood the daily ups and downs of raising a child with autism. Little did she realize she would end up connecting even more with her son, Dayne, with the music from the site. read more…

2013 Top 10 New Year’s Resolutions, From MyAutismTeam Parents

calendarWith each new year, this is a time to take stock of your accomplishments, or ponder those projects that will make it to the “to-do” list in 2013.

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And no New Year is complete without resolutions. Resolutions can take many forms; from the above mentioned project list to personal improvements in ourselves. At MyAutismTeam, we wanted to hear from the parents about their own resolutions. We surveyed over 35,000 parents on MyAutismTeam about their resolutions and what they are envisioning for 2013. read more…

5 Practical Tips for Parents of Kids with Autism This Holiday Season

Autism Holidays

While the holiday season can be exciting because it lets us break routine, thousands of parents on MyAutismTeam.com have told us that it’s the breaking of routine that can create unexpected behavior in their kids with autism. Here are 5 tips from thousands of parents on MyAutismTeam.com to navigate the holidays:

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1) Practice – do a practice run of holidays events like gift exchanges with others, or meeting Santa at the mall, or even eating at the special occasion dining table. By getting their children familiar with typical holiday festivities, parents on myautismteam.com told us, the anxiety in their kids goes down.

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