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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what’s on their mind? (adoption/foster)

Something about negative behavior struck me when I read the fourth part in the Reuter’s series The Child Exchange. (You can read my opinion on The Child Exchange – aka adoption disruption here.) The Reuters investigation shares the devastating story of Anna Barnes, a girl who was born in Russia, orphaned (although she didn’t know her mother had died, the news had been shared with her via a second party) at the age of six, and adopted by an American family at age eight. In fifth grade, she was sent to military school, and in sixth grade, she was called into the office and told, “We thought it would be fun for you. Instead of going to a military school this year, we’re going to send you to a horse ranch in Texas, and you’re going to stay there for three months, then you’re going to come back.”

A couple named Gary and Lisa Barnes showed up at the horse ranch and decided to adopt Anna. She says of her first adoptive family, “I just couldn’t see them doing this to their real son. I felt very betrayed.” Anna says, “I didn’t get to go home and say bye to my brothers and sisters. I didn’t get to say good-bye to my mom and dad.” Anna shared her thoughts on how she felt about being with the Barnes, she told them repeatedly “I don’t want to be here, I want to go home,” and that her home was in Indiana with John and Jill (her first adoptive parents).

Gary and Lisa said Anna had behavior issues they couldn’t handle, so they found her a new home. Anna’s story doesn’t end here, she continued to be abandoned.

There’s something we can learn from her heartbreak, and it’s evident when you hear her share what she’s been through. She felt something should have taken place, a major life event – going back to her first adoptive family, and that didn’t happen. She had already lost her birth family, lived in a Russian orphanage (I don’t care what anyone says about them, they aren’t acceptable and many are deplorable), and she was given up by the family (John and Jill) who promised to care for her as their own. She desired one thing, to go back to that family, and she made it particularly clear.

I saw this same situation transpire with a girl who was adopted from Africa. Some of you have heard about the unethical adoption practices that can take place in third world countries. It happened to a girl named Zenia*. Her mother, who was living in a poor village, was told by a woman that if she could not provide for her daughter that Zenia could be sent to an American family, and she’d be able to see her daughter again in one year. Zenia was told the same.

Zenia was adopted by a wonderful American family who had adopted other older children internationally. Those children were doing very well, but they always seemed perplexed by Zenias continued behavior issues and indignation. After being with the family for one year, Zenia finally shared with them what she had been told. She felt that they weren’t her parents because her mom was waiting for her in Africa.

The question here isn’t whether these children’s wishes could be granted or not, because they can’t (or at least it wasn’t likely for Anna, and it wasn’t possible for Zenia) the question is, what can a parent do about it?

Ask your children questions about their adoption. You will need to use your intuition to determine whether your child is capable of handling information about their pre-adoption experience. I don’t withhold information, but I also don’t give all the details. If a child was older at the time of adoption, it’s probably okay to talk about what happened before they came to you, because they likely remember it.

Many times behavior issues in adopted children stem from a lack of true attachment, in the situations above, I would treat it the same as an attachment issue. No matter what their pain stems from, a child always needs to make attachments.

If, in the case of Zenia, she wants to return to her birth mother, you could discuss why her mother made the choice she did, being sure to alleviate any guilt the child would have of it being her fault. You can tell her that those who told her she could go back and visit in a year lied to her and that you knew nothing about it. Share what adoption means with her, that in front of a court and judge you promised to be her mother/father forever. If you want to consider making a trip to Africa so she can visit, discuss it with your spouse and be confident it’s really possible before saying anything to your child.

Your child may not be struggling with the same situations listed here. Many of our children have similar stories, but some are vastly different. Your child may be holding onto something else, it may be a need for control (this is an element most hurting adopted kids deal with), or they are worried about moving again. These are concerns that are difficult to label, and that is why beginning to open communication is key.

Sometimes negative behaviors can be a sign of a child’s anger over what they want or don’t want to take place (as in both cases I mentioned). That’s why it’s good to talk about feelings, because that can get your child to open up and share more of what’s on their mind. Opening up dialogue with your child will help too.

Our hurting children are strong, they are strong because life has taught them to stick it out or die. They will use that strong will to get what they want, and if what they want is their birth family or first adoptive family (even if they have perfected a horrible situation in their mind), then it will take explanation and attachment for them to see it differently. They still might yell and scream that you aren’t their “real” family, or they hate you and don’t want you to be their dad, but stick with it. Showing your child continually that you will not abandon them will sink in. Eventually they will see that you aren’t going anywhere.

*Name changed to protect privacy.

Have you ever found that getting to what’s really bothering your child helped alleviate anger or anxiety? I love comments, so share you thoughts!

Some additional links that may help:
the lies hurting children believe
the magic word
it’s your fault, mom
the intelligence behind a hurting child

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the magic word (adoption/foster)

What’s the magic word? Well, truth be told, there isn’t one. Sure, “please” and “thank you” are magic words that might get you what you want, but when it comes to parents trying to convince their adopted children that they will never leave, there is no magic word. Parents try to tell their children, “I won’t leave you,” “I’ll always be here,” but do those words sink in? We wait for them to, but it never seems to go beyond that top crust where it washes off in the bath.

Our children’s experiences have taught them so much more than what our words ever can, and those first experiences shape their mind, literally. Maybe your child was left with strangers, or the one they trusted most beat them, or their mother deposited them on the steps in the freezing cold. The stories can be listed by the thousands, but they all have at least one common thread, and that is, they learned their mother/primary caregiver couldn’t be trusted. Whether that mother knew better or not, it’s what our child perceived from their experience.

As a writer I constantly hear the words, “Show, don’t tell.” We are supposed to show our readers, especially in fiction, what is happening, not tell them. The same thing goes for us as we help our kids form attachments. Our words will mean nothing to them, we have to SHOW them with actions that we’re there and will never leave. A great time to do this is at bedtime. They will SEE that you are present. It won’t be your words (which they have difficulty believing), it will be your actions showing them day after day that you are present.

We still use our words every day, we don’t leave them out, we just have to pair our actions with them. As I’ve said many times on this blog, my daughter has made significant bonds with us, yet she still has a hard time believing us, and we  make great efforts to stick to what we say. It’s still lingering though, this inability to completely trust that mom and dad know what they’re talking about.

Most children pop out of the womb thinking their mom and dad know everything, but our kids find this nearly impossible. Is that because they weren’t able to trust their first caregiver?

Because it’s difficult for my daughter to believe everything I say, I make sure and kindly point it out whenever I’m proved right. It’s not an ego thing, it’s that I want my daughter to see that she can believe in her Mommy. Last month I needed to take my daughter to the dentist, and prior to leaving we had a discussion about this fluoride they put on the kids teeth. I knew that she could eat afterwards, but she wasn’t supposed to brush her teeth that day. Payton believed that she wasn’t able to eat or brush her teeth after the fluoride treatment, and no matter what I said, she wouldn’t believe me. In the end, guess who was right? I made a point to kindly say, “See, I was right.” I’m sure the hygienist thought I had an ego complex the size of Texas, but I just needed to point out to my daughter AGAIN that she could believe me, and I could be trusted.

As the saying goes, actions speak louder than words. We must have actions to pair with those words. One overwhelming concern our children have is that they can’t trust anyone. We can help them by being there for them, listening to their worries, and being present at a time that matters most to them; bed time. They are laying there awake, their mind is wandering more than ever, they don’t have anything to distract their brain. It’s dark, they’re lonely, and they are scared. No matter how old your child is, be sure that you meet them where they are. If you sense that they don’t want to be alone, one way to begin proving that you are committed is to be there for them at night. (See the links at the bottom of this page for helpful tips to use at bedtime.)

I would also encourage you to find other ways where you can physically show your child that you are trustworthy. Some ideas include keeping consistency between what you say and do (stick to your word as much as possible). Being calm when they are out of control, or have negative behaviors can help them see that you are different from the other adults in their life. Sharing with them how you keep them safe will produce a feeling of security for them. Hold hands if they are willing. Give hugs consistently. Have family time with every member of the family. Sit down for meals as a family.

If we continually pair our actions with our words, our children will eventually trust those words. They will recognize that they can trust us because we’ve proven ourselves. Remember that those first months and years of life transformed their brain, and they are on guard against all outside influences. They are protecting themselves. Really, it’s quite amazing if you think about it.

You may find these posts helpful in showing your child you will be there for them when they need you:
the lies hurting children believe
why “good nights” are illusive (sleep issues part 1)
no really, good night (sleep issues part 2)

How will you work to have continuity between your words and your actions? How will you SHOW your child he/she can trust you beyond using your words?

If you have more ideas about how to instill trust in your children, please share them. I’d love to hear from you!