Tag Archives: nonverbal

6+ ways to help your child when they can’t communicate (Autism/special needs)

6 ways to help your child when they can't communicateHow do people; therapists, family, teachers, and friends view our child who is nonverbal? Do they truly understand our child? How does our child feel when they can’t communicate what they desire or need? Can you imagine the frustration of not being able to tell someone you’re hot, hungry, want to go to a certain restaurant, play with a certain toy, that you can’t find your favorite blanket? Can you imagine?

What is it like to parent a child who is constantly misunderstood and underestimated?

Over at Emma’s Hope Book, Ariane wrote an important piece about one of her daughter’s experiences when Emma couldn’t communicate. Problem was, the teacher should have known what Emma desired. You can read about the situation in the post, Picture Day Moments. It’s a great read and you can share it with others to help them understand Autism.

In that post Ariane writes, “Teachers are trained in a definition of autism that is incorrect.  A definition that assumes intellectual disability which is connected to an inability to make oneself understood, low IQ, problematic behaviors, unable to read aloud and therefore cannot read, a whole series of assumptions are being made daily about Emma and kids just like Emma, but

those assumptions are based on a false premise.”

When we attended our last Individualized Education Plan (IEP) meeting, I asked the school therapists and teacher if they could imagine NOT being able to communicate. I shared how frustrating it would be to not be able to tell anyone what you wanted or needed. They didn’t have much to say, either because they’ve never had parents ask them such obnoxious questions (I am the Queen of questions), or because they didn’t understand what I was saying. Most therapists and the teacher in the room are fantastic with Jeremiah, but I wanted EVERYONE in the room to understand why Autistic kids demonstrate “behaviors” (I strongly believe many “behaviors” are linked to the inability to communicate).

There was a specific person in that meeting I was trying to reach. Because of the “therapy” she did with my son, he stopped signing one of the only words he’s ever signed, and did so consistently before she “therapied” it out of him. He also stopped using a word (one of the very few words he’s ever used) we’d been working on, well, for years. You can read more about that experience here.

Kindly educating others helps them see the beauty in Autism
In that IEP meeting, I was making an effort to educate the educators on Autism and my son. We need to share what we learn and what we know about our child with everyone in our child’s life. We don’t have to be the know-it-alls, but we are the ones living it and researching it (share articles and pages from books you read), we didn’t sit in a room and learn from a speaker or text-book, and others can gain insight from what us parents have experienced.

Share everything you can about your child:

  • Stories about what they’re doing and interested in at home.
  • What your child is playing with.
  • How their play/behavior is changing.
  • What behaviors they’re displaying (discuss what you think is causing the good and the negative behaviors).
  • What your child likes.
  • How your child is communicating and changes taking place. I mention the word “changes” a lot because our children are constantly in transition, what was true yesterday or last week may not be true today, so it’s essential that we have constant open communication with everyone in our child’s life.

In the end maybe we can avoid those Picture Day Moments Ariane wrote about.

My hope is people would learn more about Autism, understand more about Autism, and accept Autism. My hope is that strangers, acquaintances, friends, therapists, family, and teachers would understand our children and people who are nonverbal. Sharon Draper wrote an awesome book, Out of My Mind LINK, that I think everyone should read, it was an eye-opener for me and showed me so much about individuals who are nonverbal.

Emma’s Hope Book is a great resource for parents of Autistic children, and a great website to share with others who are involved with anyone who has Autism.

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your child can hear you (Autism/special needs)

your child can hear you
I recently watched a video on Autism, and in that video moms are shown with their children, meltdowns are taking place, some kids are hitting their parents, you hear the babbling of nonverbal children (all trying to make their voice heard), kids that are too big to be carried clinging to mom, vying for her attention.

It’s real, and sometimes it’s the exact life I live. However, many of the moms in that video don’t realize their children can hear what they’re saying about them, nor do I feel they see the qualities their children possess. I don’t feel they’re trying to hear wheat their child is saying when they make a noise, hit them, or fall on the floor in a meltdown.

For this post I will focus on the first point. Our children hear what we say. Even when it looks impossible, like our child doesn’t understand the world around them, they CAN hear us.

I was surprised by what the mothers in the video were saying in front of their kids. At the same time, some of it sounded familiar because I’ve been there, saying very similar things. I still find myself making comments that I shouldn’t.

The moms in the video were saying:

  • This is so exhausting. (Referring to taking care of the child.)
  • She wants all of my attention.
  • He’s so difficult.
  • She’s like a baby.
  • He can’t be left alone for a minute.

My son, Jeremiah, is nonverbal and it took me a while (too long) to come to the realization that my son understood far more than what I thought he did. When I saw Jeremiah smiling in response to us talking about what he’d done, I started to recognize what he understood. Then he began to laugh at funny things he was doing, or funny things we said and it continued from there, me realizing what this kiddo understood, and how much I didn’t. Some of you are shaking your heads, saying, “Duh.”

When your child doesn’t obey simple (or so they seem to us) requests, it can lead you to believe they don’t understand anything you’re saying,

and that just isn’t true.

We also need to treat those with special needs with respect. Maybe you would say those things about a typically functioning child, but many wouldn’t. Stress makes us do things we normally wouldn’t.

It’s also really important to recognize that meltdowns are a child’s way of communicating, so are most other behaviors. And one woman, when describing her hand movements (stimming), said it was the song of her heart. She was communicating through her hands. When individuals are nonverbal everything is tucked inside, maybe it sounds obvious now, but I feel the fact is easily forgotten.

Let’s remember to be careful how we talk to, and about our child when they can hear us. Here’s another good post to help remind us how we should treat our kids, and how we should expect others to treat them: Would You Accept This Behavior Toward a Non-Autistic Child?

I also highly recommend everyone read the book, Out of My Mind by Sharon Draper. It gives us a glimpse into the life of someone who is nonverbal, but has much to say. It’s an easy and quick read, but so much can be gained from reading about Melody’s world.
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my child’s an individual (Autism/special needs)

individual

This post was inspired by Musings of an Aspie’s post, I Am Not Temple Grandin. Please check out her post, it’s well worth the read.

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When someone finds out your child has Autism, do they drop famous names such as, Albert Einstein, Bill Gates, or Temple Grandin, or do they reference the movie Rain Man? Maybe it’s better they relate your Autism experience to these examples than just stare at you, because that’s the reaction I receive the most when I mention my son has Autism.

I’ve also heard references to the above famous names when I tell others about my son having Autism. I’ve also been given blanket statements like, “People with Autism are SO smart.” Yes, they are, but intelligence looks different for every person on the spectrum.

My son is nonverbal, we see glimpses of his intelligence at times, but in other ways life is difficult because he doesn’t understand our world. We have to live in his, which has taught me so much, and try to bring him into ours continually so he can function in life.

I love the post I Am Not Temple Grandin by Musings of an Aspie, she so eloquently describes the diversity in people with Autism, addressing marriage, jobs, and personalities.

mychildisnt

People on the spectrum are just that, people.

They are unique individuals just like everyone else. Problem is everyone else wants to put them in a box. If they’re high functioning or have Aspergers, they’re like those famous people I mentioned earlier, and expectations are placed on them, as if they presume they’re a savant. If someone is low functioning, people want to associate them with someone, albeit non-famous, who is lower functioning.

I don’t think it’s so bad for people to make associations in Autism, but they need to be careful to not place those expectations on others. Also, mentioning the Autistic Greats to parents may make them feel discouraged. We don’t need to be reminded of the awesome geniuses related to the Autism name (we already know all about them – I think Temple has some great insight), we need to be able to focus on our child’s individual greatness. 
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be positive for the little people – part 1 (Autism)

bepositiveAutism1

Some of you who parent a child who has Autism get it, you see the great potential they possess and the intelligence which lies within them. Some parents have difficulty seeing those positive attributes in their children.

I fall somewhere in the middle, though I hope closer toward the former. I am making progress in understanding my son’s capabilities, and I wrote a post about what I am learning called Viewing My Nonverbal Child Differently, if you haven’t read it, I recommend doing so. Not only because I wrote it, oh no, but because there is a link to a post Joanna Keating-Velasco penned that is wonderfully insightful. You don’t have to have a child who is nonverbal to read it, I think it applies to many of us.

Last week I wrote about negativity being contagious. It is, and as I said in that post, we may not realize when we are surrounded by negativity, nor when we are filling our life with it.

When we have a child with special needs, it can be so easy to slide into negativity. Not only do I mean saying things like, “This is so hard,” “Why can’t you sit still?” “I can’t handle this anymore,” “Can’t you eat something else?” I also mean the way in which we talk to others in front of our kids, and what we think, as in our expectations of our child.

SLIPPING INTO NEGATIVE NO, NO LAND

Our son, Jeremiah, had been doing better than he had in months. He had gone through some drastic regression, but finally after several months we saw that glimpse of hope. Wow, it’s hard to stay out of negative land when your child regresses significantly and stays there. Jeremiah had stopped drinking juice, which is how I got this AMAZING, sent from heaven, fish oil in him, his sensory needs were off the chart (well, with SPD, they’re already off the chart, but this was worse), he was no longer employing his limited use of PECS (Picture Exchange Communication System). I was falling farther into that Negative No, No Land.

Finally, I gave it some serious prayer. And, frankly, and completely honest, a miracle happened the next day. We gained, progress was made; there was less angry gnawing at his clothes, less intense sensory hyperactivity, a happier boy, more emotional connection. I know some of you may not believe in God or miracles, and if not, I invite you to spend a couple days in our life because they’re real.

I was negative in those really difficult months, I said things I’m not proud of. I wasn’t calm some days, I got irritated with my daughter (she doesn’t have Autism) when she wasn’t doing anything wrong. Not only was I seeing everything with a negative bent, I was beginning to feel guilty because of my actions and attitude.

NEGATIVITY CAN STEM FROM GUILT

Sometimes our negativity comes from the guilt within. When we fall short of our expectations of ourselves guilt arises. We don’t feel we’re good enough to parent a child with special needs, we don’t say the right things, do the right things. We aren’t gentle enough when our child is jumping on the couch, and we are sitting him down for the 115th time that hour. We don’t feel we do enough therapy, we don’t have enough energy, we don’t try hard enough to feed her a different, healthier food. We don’t notice when everyone else wants to give us a “mother or father of the year” sticker, because we feel stickers of shame, thinking, “You don’t see me at home, or in the car. You don’t know everything about my parenting.”

The reality is that we all have aspects of our life we need to work on. Not one of us is perfect, but we can all make a decision to be better tomorrow. We can all change how we parent.

No matter where our negativity stems from, be it our own guilt over our “failures” or because of our child’s behaviors, our kids can sense how we feel. It comes across as displeasure, condescending remarks, lower expectations, less effort, and depression. I’ve had to work on all of these areas. I still haven’t reached knighthood, far from it, but I have learned some great lessons, and ways to do it better. You’ve read about those in the links I shared and I will share more ideas to help you stay in the right frame of mind later this week in Part 2.

 

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viewing my nonverbal child differently (special needs/Autism)

respectnonverbal

My son, Jeremiah, has something to say. Problem is, he can’t. He has nonverbal Autism. I’ve known he wants to communicate; what he wants to eat, what he doesn’t want to do, what movie he wants to watch. How do I know? Because he’s learned how to use body language (not sign language) to show us some of his preferences. He has also shown us what some of his likes and dislikes are through behavior. When I was in a meeting with his therapists a little over a year ago, I came to the realization that our children, even neurotypical ones, communicate through behavior.

It was an eye opening (or now I’m recognizing they were only half open) moment for me. Even when our children have negative behaviors they are trying to tell us something. Since that juncture I’ve made great efforts to decipher what Jeremiah is trying to say to me, but I still fall short. A perfect example was when he walked up and whacked me on the leg a few weeks ago. My response was a firm, “Ow, be gentle.” My husband, Justin, said, “He’s saying, ‘Hi.’”I still tell Jeremiah to be gentle, but I say “Hi” first.

Wow! The idea that when Jeremiah smacks us on the arm or leg, he’s greeting us, completely changed my view of the encounter and my response. A little background on the hitting; along with being nonverbal, Jeremiah also has Sensory Processing Disorder (SPD). For him, SPD takes on many forms, but most of the time he needs a lot of intense sensory input. This means he jumps with intensity on hardwood floors, hits tables, chairs, his head, and his knees to get sensory input. Basically he’s not gentle, so he’s not going to come to us and place his hand softly on our cheek to say “Hi” or “I love you,” he will do it with intense fervor as he does everything else.

In the past three weeks I have encountered opportunities to learn about Jeremiah’s nonverbal world, and in turn I share them with you. One was when I talked to Bethany from The Golden Hat Foundation, she brought insight to the nonverbal world of Autism. She was telling me about the movie A Mother’s Courage: Talking Back to Autism. Keli, a boy with nonverbal Autism, had learned to use a letter-board to communicate. When he was nine, he wrote his first sentence, he communicated his true thoughts for the first time. He wrote, “I am real.”

Those words floored me. I would imagine Keli’s words aren’t exclusive to him, I nonverbalthink many nonverbal people (don’t forget the children) don’t feel the world sees them for who they are. Bethany added to Keli’s words saying, “They have a favorite color, favorite food…”

Tears sprang up in my eyes (which were opening a little more). My son, Jeremiah, has a favorite color! I know he has favorite foods because his diet consists of three things, I know he doesn’t like some of his clothes because he takes them off, and I know he loves his magna-doodle because he’s always carrying it. What I didn’t realize was, Jeremiah has a favorite color, a favorite outfit, and SO much more. I only know of the things that I can study in him; his favorite toys, activities, whether he likes to be warm or cool (and since there is often a bare bootie running around here in the winter, I’d say he doesn’t mind the colder side).

The second time that nonverbal Autism came up was in a post written by Joanna Keating-Velasco on www.special-ism.com. Here’s what she had to say in Eight Ways to Show Respect to an Individual Who Is Nonverbal:

Not being able to speak is NOT the same as not having anything to say! Following are eight strategies to foster a relationship of mutual respect when interacting with an individual who is nonverbal.

In & Out of the Loop
Just because someone is unable to communicate verbally, it doesn’t mean they are unable to hear. Include them as part of your conversation dynamics. DO NOT talk about the individual as if he or she is not there. Unless the individual is specifically included DO NOT talk about their care needs, challenges or behaviors. Avoid gossiping about others or talking about inappropriate subjects. Also, take opportunities to advocate for them by encouraging others to be considerate

You can view the rest of the article here. I really encourage you to check it out, Joanna has some great points.

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Jeremiah is only four, and his comprehension is expanding, but there have been times when we felt he didn’t understand what we were saying. But, maybe he did, he just wasn’t able to follow through with our request. No matter what a nonverbal persons level of perceived awareness, they deserve our respect.

If you know someone who is nonverbal are there any changes you can make to how you treat them? For me there are points the author of the post above makes that I need to work on, such as waiting for Jeremiah’s response, and not talking about him or his behaviors negatively when he can hear me. What do you think of Joanna’s points?

*The Golden Hat Foundation is an exceptional organization that exists to “change the way people with autism are perceived, by shining a light on their abilities and emphasizing their great potential. With proper education and career training, these individuals can truly realize their dreams…”

Share this post or blog with anyone you know who would benefit from knowing more about the nonverbal world. The more that awareness is spread, the more people will be understanding of special needs.
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