The First Time I Realized My Nonverbal Autistic Child Was Communicating

 

This is a guest post for parents by Marci Lebowitz, OT and Autism Specialist.  

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Danelle and Oliva’s Breakthrough Moment
“The first time I realized my nonverbal child, Olivia, was trying to communicate with me I just lost it. It felt like every emotion I had ever experienced rushed through me all at once. I felt immense joy that I could now get a glimpse into her world that had been hidden away from me for so many years. But I also felt some level of guilt and regret that I hadn’t noticed earlier. I’m sharing my story here to hopefully help one or two of you parents of not-so-verbal children with autism have an experience similar to mine.

Screen Shot 2015-12-14 at 3.48.50 PMIn the beginning of my autism journey I was exhausted. I was frustrated, and like many of us, I was scrambling for answers. When I wasn’t reading every autism book I could get my hands on, I used any free moment to catch up on housework, emails and the hundreds of other daily tasks clamoring for my attention.

Unfortunately, I wasn’t spending much of my time being present with my child. When I wanted to occupy Oliva I would give her my iPad, her most prized possession. I knew it would keep her attention long enough for me to make some progress on whatever task I was wrestling with at the time. Her time on the iPad was mostly spent watching videos. Unbeknownst to me, this would be the key to us bonding and communicating.

One day when I finally felt like I could take a much needed breath, I sat down next to Olivia and watched one of the videos she had been playing that day like a broken record. It was about playing outside in the water. I don’t know how or why it struck me, but my intuition said that maybe she was playing the song for a reason. Maybe she longed for what the song was about, playing outside in the water.

So I grabbed her up and brought her outside to sit by our pool. I saw her eyes brighten in a way they never had before, and I felt her relax back in a big way. She knew that I got her message. Finally, someone understood her. All this time she had been playing me songs to send me messages, but I was too much of a nervous wreck to notice.

After I realized what was happening with her songs, our interactions became more frequent and joyful. We delighted in this new found medium for communicating what we had been trying to say to each other for so long. Even though to the outside world it didn’t look like a typical conversation, it felt more intense than any other interaction I’ve had with another person.

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What amazed me was the fact that when I joined her in her favorite activity, it ended up giving me the answers I was looking for on how to reach her. Our encounters led to more smiles exchanged, improved eye contact, and eventually other forms of intuitive and now verbal communication. To be honest, I felt embarrassed that it took me so long to figure it out. If I hadn’t taken the time to slow down, calm and catch my breath, I may have never received her messages.”

 

The First Step to Having a Communication Breakthrough

The above story is from my former client and good friend, Danelle Shouse, who is now an autism specialist herself. I had the honor of supporting Danelle and Olivia during their journey to discovering how to communicate. I believe one of the reasons Danelle was able to figure out how to bond so deeply with her child was because she learned how to communicate with Olivia on Oliva’s terms first. Before making this commitment Danelle was swept up in the busyness of life and felt lost in how to reach her child.

The first and most important step we worked on to help Oliva was to help her mother calm her own overactive mind and nervous system. When a parent learns to calm themselves it does wonders for both the parent and the autistic child. The reason calming so profoundly affects the child is because autistic children are like perfect tuning forks for the moods and emotions of their parents. The more stressed out the parent becomes, the more anxious the child will behave. In turn, the anxious child will then act out and make the parent even more stressed. And this mirroring cycle continues until the parent decides to calm.

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Once you stop trying to anticipate your child’s next meltdown, and instead turn your attention to calming yourself, your child will notice the shift in you. Your calmness will feel like a warm blanket to them. The safer they feel with you, the easier it will be for them to try and communicate with you in whatever way is possible for them.

When you approach your child calmly, this will allow you to decipher the communication clues your child is sending you with clarity. Your high-strung nerves can melt away into compassion, bringing a sense of peace to both you and your child. For a deeper look into the calming and communication methods I employed with Danelle and many others get my free eBook, Autism Simplified for Parents. It’s a quick and easy read with tons of useful, actionable information that will make your parenting life easier.

 


 

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Marci has been an Occupational Therapist for 28 years and an autism specialist for over a decade. During her expansive career, she has worked in schools, private outpatient practices, hospitals, a prison medical facility and skilled nursing facilities.

Known as “The Mary Poppins of Autism” she has developed effective behavioral management systems, sensory calming strategies and alternatives to physical restraints and seclusion.

She is a dynamic speaker and loves educating autism parents, extended families and professionals about the underlying causes of challenging behaviors; distinguishing between tantrums, sensory overload and meltdowns; and how to have fun with children with severe autism!  Find out more about how Marci supports autism parents and professionals at www.marcilebowitz.com.

My Son With Autism Has A Beautiful Smile!

Often it’s said that people with autism don’t smile and don’t understand emotions. We know that to just not be true. Something people always tell us about our son is, “He has an awesome smile!” Really we don’t need to be told that. Its great they see the same things we do. He does have an awesome smile. He also has this infectious laughter and beautiful sense of humor too.

We have four children. Ranging in age from 17 to 5. Our third child Hunter was diagnosed with autism when he was three years old. Deep down I wasn’t surprised by the diagnosis because all the research had been bringing up the same diagnosis. At the time it was really hard for my husband to accept. I accepted the diagnosis easier. Probably because I poured myself and all my energy into finding quality therapy.

We were afraid of what the future would be like for our child. We had huge dreams for our son. With therapy and support of family and friends we finally realized that he still had an awesome future. We know he will do great things and affect many people in positive ways around him. Of that we have no doubt.

This last week end we played with water balloons. Our son had such fun and found humor in the whole game. Even making sure to get mommy because he quickly realized I was trying to stay dry. Already he has been asking, “Can we buy more water balloons?” and of course we will. It’s just great to see our son participate in an activity. It lets us see how far we’ve come. Really how far he has come!

In kindergarten he moved to a new elementary school. I was so worried that he might be bullied or not thrive in a new school. My worry was unfounded. He went into kindergarten and while he struggled academically he made friends and was able to interact with the other children. At one point we actually had to make sure the other kids let him try to do things on his own. I never would have thought that would be a concern that would happen.

Some things Hunter has loved doing for therapy has been equine (horse) therapy, extra speech therapy, and physical therapy as well. Hunter really showed his personality in equine therapy. Even showing off his skills when other kids were participating. When thinking of therapy make sure the people providing the service are trained and properly accredited.

Something else that helped him was social stories. Social stories visually explain a task or skill that need to be learned. We made a social story we could read on the IPad together for potty training. I saw a need for him to understand how to play with other children, and I created a play interaction story. I even made it my entire thesis project. It was just what he needed. Even though he still struggles from time to time with pushing or shoving he is doing so well and making lots of friends.

Yes, my son is academically behind but he can do so much. He is not bound by his Individual Education Program (IEP) to define who he is. Hunter visually excels and can do amazing things. If we have learned anything from these last few years? We must believe he can do great things. We see Hunter for what Hunter can do. We have taken great value in not comparing him with others.

He is his own person and every week surprises us with new achievements in areas we were once told he might not ever be able to do. I wouldn’t be shocked if someday he’s designing rockets or cars. My advice to parents on this journey is to seek out all therapy options. Do what works for your child. Also work with your pediatrician and therapist to create a great individual plan for your child.

Be your child’s advocate and never give up on them. Every child is unique and can do great things if we look at them as the person they are verses what everyone expects them to be. In our society that can be hard to do. I truly I believe each child is awesome. Hunter is awesome and your child is awesome too!


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Rebecca Batdorf is an author living with her family in Indiana. She is married with 4 children. She is a recent graduate from Indiana University Purdue University Fort Wayne (IPFW) with a degree in visual communication with a concentration in graphic design. For her thesis she created visual social stories for her son with autism. You can preview her social stories here, and buy Let’s Play on Amazon. 

“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 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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