Tag Archives: communication

are Autism behaviors annoying?

Are Autism behaviors annoying
An interesting conversation arose between me and a family member about Autism. I’m sure whether you are Autistic or have a child with Autism, you’ve had some interesting conversations yourself. This exchange began with me talking about my son, Jeremiah who is four-years-old, has Autism, and is nonverbal. I said, ”I had a dream that Jeremiah could write letters and say them.” Joan* responded, “I pray that every day, that he’d be able to do those things and more.” I said, “I would love for him to be able to communicate and not be irritated.” To which she added, “…and annoying.”

I interrupt this conversation to talk about this first point, “…annoying.”

(More was discussed beyond this, but I will save that for another post.) So, annoying, yes certain aspects of Autism are annoying, especially when the child can’t communicate. But heck, aren’t we all annoying at some point to everyone around us? Doesn’t something bother you about each person you know? Okay, probably not, but we each have our unique personalities and can, quite frankly, be annoying. I’m not, but hey, you need to work on your issues. 😉

Now, Joan wasn’t saying Jeremiah’s annoying in a mean way, she loves him, but she knows that when I’ve had it up to my eyebrows with everything in my life, including moments with Autism, she will watch the kids (she runs an in-home daycare) a little extra for me. She knows that some things Jeremiah does can bother others. He bothers her too, and she has a LONG fuse. But, I’d say 98% – 99% of Jeremiah’s “annoying” behaviors are the result of him not being able to communicate, coupled with his sensory needs.

Jeremiah’s a REALLY good kid other than he exhibits what we see as negative behaviors when he can’t communicate and when his sensory needs over or underwhelm him.

For example, when Jeremiah doesn’t have his PECS* card for “food” available, he opens the dishwasher to climb on the counter to get his snack. He doesn’t open anything else, he doesn’t make a mess, he simply gets out the goldfish, and is usually found out before he opens the package. Getting him off the counter is “annoying” to me because I have to lift him off the counter, and I have back problems, so it hurts, and doing this consistently on “bad” days, coupled with other behaviors, is hard. But, we can see that he’s climbing on the counter because he’s hungry (always) and wants to eat, but wasn’t able to communicate his need in a timely manner, if at all.
there is a purpose behind the Autistic persons behaviors

Another example would be when he screams (happy screams) at THE TOP OF HIS LUNGS when he’s inside the house. Can you say, “ANNOYING!!!?” Yeah, it is, to the extreme. Why is he screaming? We don’t know. I would bet it has something to do with sensory issues and communication, depending on the moment. Problem is, he doesn’t stop if you ask, he may for a moment, but he’ll do it again. So, he’s trying to communicate excitement, sharing that he likes something that’s going on, or a way he feels, he may like the way it tickles his throat, it may be his only way to say, “I’M RIGHT HERE PEOPLE, HEAR ME ROAR!!!” He’s a boy after all. 🙂

Those things that annoy some of us are our child’s way of saying something: they’re get excited when the sun is shining, they want to play at the playground you just passed by, flourescent lights irritate them, they hear humming in their ears, they’re saying “hi” (Jeremiah does this by hitting – we’re always teaching him to be gentle, but we need to acknowledge that he’s saying “hi”), and so much more.

Really so much of what I want for Jeremiah is based on two key things I’ve talked about here, I want him to be able to communicate and I want to help him with his sensory needs, or for him to know what to do for himself. And in the end, I want Jeremiah to be happy. That’s my desire for him.

In the beginning of my Autism trek, I was surrounded by people with more of a “poor us” mentality, parents want to “cure” their child, people who wanted to know how we could “fix” Jeremiah, it wasn’t so focused on the positive attributes of Autism.

I’ll be discussing more of that mentality next week, because the conversation I had with Joan moved into the area of “fixing” or “getting rid” of Autism.


*Names have been changed to protect privacy.

*PECS stands for Picture Communication Exchange System which uses photos as a way to communication.

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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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keep it simple: simple language = understanding (adoption/foster)

keep it simple-understanding
Do you have a young child who doesn’t obey when you ask her to do something? Does your child smile at your from the top of the table when you’ve asked him to get down? Do you have a newly (within the last year) foster or adopted child who is older but doesn’t do what you ask?

It’s definitely possible that your child is ignoring you,

but it also may be that they don’t understand what you want them to do. Today I will give you some steps to help your child understand you, and after you’ve tried this for a few weeks you’ll know if his behavior is stemming from something else. (All behavior is communication so it’s important to get to the bottom of the actual problem.)

When we were working with speech and developmental therapists to help our son, Jeremiah, they suggested I say, “Get down,” instead of, “Get off the table.” The therapists point was first, to keep it short, and second, to end the sentence with the action I wanted to take place. If we say, “Don’t throw sticks,” the child may only hear the last word or two, “throw sticks.”

At first, I didn’t really like the advice. I come from a background in education and I talked to kids in full sentences. I believe children are much smarter than we give them credit for, and I noticed it first in the children I worked with in an educational setting. I had also talked to my daughter, Payton, in full sentences and it worked well. Even though she was in multiple homes while in foster care before coming to us, she still understood.

But each child is different, and although children from similar backgrounds can have comparable behaviors, they can also have some that vary.

While I’ve talked before about how intelligent our hurting children can be, some can have cognitive delays, and most have developmental delays.

A child who comes from multiple homes (multiple foster care placements, biological homes that are unstable) or even a couple, may not have a language foundation for understanding guidelines, in fact, there probably were no set guidelines. Some days they did whatever they wanted and other days parents and caregivers came down with a vengeance, expecting perfection.

So, with this basis of understanding we can give our children a foundation to start on. When telling your child to do something:

  • Keep your sentences short: “Hands off.” “Be gentle.”
  • If your child is young you can do hand-over-hand motions to teach them. For example, if your child is hitting, you can gently take their hand and touch your arm softly with it while saying what you deem appropriate, “Soft hands.” “Be gentle.” You can also show them how to be gentle with an animal in the same way. When children haven’t been taught how to be kind, they don’t know how, when children have been dealt with roughly, they will do the same to others. But they can learn.
  • Try to end your short statement with the action you want to take place. If your child is jumping on the couch and you want him to sit, it’s counterintuitive to say, “Please sit down on the couch.” Saying, “Sit down,” will communicate exactly what you want your child to do. Your child may be hearing only the last word of your sentence, if you’re saying, “Don’t hit,” they only hear the word “hit.” More examples to use are “Get off,” “Get down,” “Hands off.” (It’s great to teach your child how to be polite through the words you use, but you can teach manners in other areas, not when you want an immediate response, and not until they understand what you’re wanting.)
  • Be consistent. If you have a rule like: No Jumping on the Couch, be sure to follow through with keeping your child from jumping on the couch.
  • Move. Your child will know you mean what you’re saying when you walk over to them. This doesn’t mean stand over them authoritatively and have power over them, but they do need to know you’re in charge. They need to know that you feel it’s important they follow the rules of the house. If you don’t participate in helping them follow through and you only yell across the room, they don’t take you seriously.
  • Praise specifically, genuinely, and often when your child does what you ask. You can say things like, “Thank you for sitting.” “That was great listening.” “You were so gentle with your sister.” Praise when you see your child doing positive things, even when they aren’t asked, to reinforce what good behavior is: “I like how you and your brother are playing together.” “You’re sitting at the table so nicely.” “That’s exactly how to use that toy.”

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keep it simple
When you have a child who isn’t obeying, you may want to consider their past experiences. Many times you won’t know what that experience was like. Often I hear parents saying, “Their birth parents weren’t abusive, they just didn’t take good care of the kids,” and other such statements. Really, we don’t know what happened in our child’s previous home(s). We don’t know if our child was screamed at, hit, expected to carry far more responsibility than they should, if expectations of behavior existed, whether those expectations varied. And, for a child who speaks a different language, even after learning your language, there can be a communication breakdown, especially with English, as it’s complicated.

We don’t want to belittle our child’s intelligence, so use full sentences when you aren’t asking your child to do something. Simple directions can go a long ways and you can build on them as your child begins to follow those directions.

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avoid holiday hassles

avoidholidayhassles

We all know the holiday hoopla is fast approaching. Some of us look forward to it, but for many it brings a mixture of depression and anxiety, filling us until it’s all over and we can say it’s two-thousand-fourteen.

No matter where we find ourselves, many of us will be visiting family or friends during the holidays, and some of us will be playing host. This can create added stress onto school activities, social gatherings, special events, the present parade, cooking, and shopping. So what can you do to make that visit with Granny Beatrice go better? Communicate.

What do your children need? How do your children act? What will you need to do that’s different than other families? What do you need your family to do for you?

Explanations go a long way to help our family and friends understand what your child will be doing while spending time together, it will help them understand the special treatment or things your child needs. When we got together with family for Christmas one year, our son, Jeremiah, was fascinated with the string of lights and ornaments on the tree. Our extended family all looked like wide-eyed monkeys on adrenaline when Jeremiah stood close to the tree and touched the bright, beaming lights or the sparkling ornaments. He has Autism. I explained what was going on, it calmed them down a little, and I think understanding why he wasn’t leaving the tall, sensory overloading Christmas tree alone helped. It was a starting point.

There have been situations we’ve needed to head off before we arrive at someone’s house. When Jeremiah is outside his environment and we can’t go outdoors, it’s best to play movies he likes. This is a little bothersome around the holidays because of football games, but they were able to deal with some missed field goals while Lightning McQueen racing across Route 66.

That year I sent an email to all who would be there explaining that Jeremiah would be watching movies, we also added that he doesn’t do this at home (because we wanted to avoid any judgement up front). You can gauge your family and determine what needs to be said and what doesn’t. I don’t condone extended t.v. time for Autistic kids, but if we ALL want to enjoy the holiday, our child needs to be content, and if movies do the trick, okay by me.

In the past, my daughter has struggled with attachment issues and Oppositional Defiance Disorder. We’d had experience visiting extended family members, and a a few things came up that we wanted to avoid before we arrived. Those were that Payton couldn’t handle being told something and then having it changed, she also tended to sabotage anything fun. We kindly explained this to our family.

We asked they not tell Payton about any activities we were going to do. For example, please don’t say you’re going to decorate a gingerbread house before you realize there won’t be time to do so. Don’t say you’ll go sledding before you find out that the child didn’t bring any snow clothes. This can be true for any child, but the outcome can be much worse for a child who has attachment issues.

We also avoided telling Payton of anything we planned to do. Number one, because anything can get cancelled for numerous reasons, and two, she would sabotage anything. To her it was a test to see if we would still do that “special” thing with her (equaled love in her mind) even if she misbehaved.

Our family is learning, but Payton has also healed significantly. This year Justin and I were talking about what we would do when we went to see some family. We were trying to be secretive, and of course Payton wanted to know what we were saying. I thought she could handle it at this stage, so I told her we were probably going to go to the Aquarium. She was really excited, she’d been wanting to go back for a couple years. Then I got a text from my dad, they were thinking of going to the zoo since it was a such beautiful weather. I cringed, I had already told Payton what we were doing, would she be able to handle the change of plans? I broke the news to her, I used some paradoxical parenting, something I rarely do anymore. I said, “You’re going to get really mad when I tell you this. It’s okay, you can yell and stomp your feet.” She smiled and said she wouldn’t. I told her the new plan and she proved that she has come a long way, she said, “Okay.”

This year we will be having another friendly conversation with family about their expectations of Payton’s obedience. Although Payton is doing awesome, she’s still a child, and she’s stinkin’ smart. She knows when she can get away with ignoring someone’s request. When we aren’t around, and even when we’re near, family doesn’t expect her to be polite or follow their requests (many times they aren’t formulated as requests, but as, “I think your mom wants you to wash your hands.” It needs to be, “Wash your hands please.”) I know, it puts pressure on Grandma and Grandpa or Aunts and Uncles to lay down the law, but if they don’t let her know they expect good behavior, she’ll push it. She also has a certain little thing called a strong will.

Other families deal with this same scenario. A family I know went to visit Grandma, and while Grandma was preparing a pickle tray, their son, Caleb grabbed a pickle and said, “My pickle.” When your child has attachment issues and other diagnoses added on top, this behavior isn’t shocking at all, but this wasn’t something Caleb would have done at home. He was making attachments and his behavior was improving, but when expectations were lowered, he still struggled some.

Being around others who don’t have the same expectations we do can sometimes cause our children to backslide. It’s a training process both for our children and for those who are frequently involved in our life. They need to know what we expect and be willing to back us up.

These conversations we’ve had with family have dangled between congenial and heated. The outcome will depend on how you approach them, the tone, and words you use, so contemplate those three factors. It will also depend on your family and friends. Are they judgmental or accepting? Do they have experience with special needs?

Let’s review some questions to ask yourself when considering what to share:

  • Does your child do things that are different than others?
  • Does your child have needs that are special?
  • What will you need when you visit family or friends for the holidays, or act as host?
  • Do you need family/friends to avoid saying certain things?

I hope this helps you to have a better holiday with your family and friends! For those of you in the USA, have a wonderful Thanksgiving!

forgiving the flippant remarks

I was spoiling myself last week, I got a massage. An hour, laying on a warm soft surface (not a hardwood floor while working with my son), hearing nothing but tranquil music (not a screaming child or feet pounding that hardwood floor), smelling fragrant candles (not gold-fish cracker breath), and having someone rub all the stress out of my tired, sore muscles (not straining them by picking up a child who needs held), it was nice. I LOVE my kids and wish for nothing else, well except for an hour break where I can breathe and not worry about ANYTHING except if I missed a spot while shaving.

While getting this massage, the masseuse (we’ll call her Megan) and I chatted. She knew my son has Autism and she brought it up last week during this massage session. She asked if he talks. I said, “No. Well, he makes sounds, and can repeat occasional words, but no, he doesn’t use words to communicate his needs.” She replied, “My son won’t stop jabbering, sometimes I wish he didn’t talk.”

original photo by rlewin via www.sxc.hu

original photo by rlewin via http://www.sxc.hu

Yikes. I honestly don’t think she knew what she was saying, or rather, who she was saying it to. She had no idea what my son goes through every minute of his life when he can’t tell us what he wants, needs, or wishes. She doesn’t see him biting his hands or any skin he can reach so that it turns black and blue because he’s so frustrated he can’t get the words out. She doesn’t see him shaking with rage because he can’t tell us what he wants. She doesn’t see the other side of DSCF0239communication breakdown which is comprehension. She doesn’t see him crying and screaming because he doesn’t understand why he has to leave that precious magna-doodle drawing pad (he LOVES them) at the chiropractor’s office and not take it home.

What does my child who can’t communicate endure? What does he cry and scream about? What does he feel is important enough to throw his body onto the floor and rip at his shirt with his teeth? Imagine… he can’t tell us if he feels sick, has a headache, a toothache, a sore throat. He can’t tell us when he’s hot, cold, or his clothes are itchy. He can’t tell us he wants a fruit buddy instead of crackers, or that he wants juice instead of water. He can’t tell us he’s tired, irritated, or angry. All he can do is show us, and that just doesn’t work very well sometimes.

What do we go through when the son we love throws raging fits; biting, kicking, and screaming because he wants something, is angry about something, or just feels crappy? We feel horrible. We stress every day, wishing we could understand what he is trying to say through some really unpleasant actions. I can only speak for myself here, but I’ve been impatient, I’ve cried along with him, I’ve felt his despair, his loneliness, his frustration. Not only the nonverbal part, but Autism in general throws us all in a tumult of emotions at times.

Megan had no idea what she was saying when she wished her son didn’t talk. It’s kind of like saying to a mom who has a child without legs, “Gee, my son runs around like crazy, he’s so hyper, I wish he didn’t have legs.” Well, I ‘m stretching a little here.

Megan is a kind woman, and I thought she might be more sensitive to the issues I deal with every day. Why? She travels to Africa regularly to work with orphanages, she has a BIG heart. But big hearts still speak the wrong things to the wrong people. I do too. All. The. Time. If I want forgiveness for every time I’ve been selfish, rude, and insensitive, I have to forgive Megan for what she said, and for her insensitive comment. I do. I forgive her.

I know that many of you have put on that catcher’s garb and fended off remarks much worse than this. I’ve written about this before, and I know it will come up again. First, because I’m so dang sensitive, and second because I want you to know you aren’t alone. It seems that’s what everyone wants to hear, sure you want assistance in how to help your child who has Autism or attachment issues, but really deep down I think people want to hear they aren’t alone. Maybe you want to hear there are other careless people out there, and it’s not only your parents or siblings who make absurd comments.

I figure the only thing we can do is be kind, because that’s what we want in return. We can be honest, but truth can be said without anger, and I’ll admit it can be really hard. Megan later realized what she was saying and tried to compensate with, “That must be really hard for him to not be able to say what he wants.” Yep. Right. I was honest, but maybe not as forthright as I should have been. Yet, I had to consider her heart and I don’t think she meant to offend me in any way.

Many of you who have adopted know what I’m talking about in this post, you are right there fielding inappropriate comments and questions from others. This post is for you too, you are not alone either. This masseuse added more comments and questions to her bag. In referring to us fostering and adopting she asked if we ever wished we hadn’t done it. No. Bleepin’ NO! I guess I haven’t done a good job of communicating how much I LOVE my children. My life would be significantly less meaningful if they weren’t with me.

Have you received comments regarding your family or children that were unthoughtful? How did you handle it?