Posts Tagged ‘nonverbal’

The Detective

Out of sorts.magnifying glass

Emotional.

Just not right.

Overly dramatic.

Controlling/ bossy.

Out of her groove.

Not herself.

In a mood.

Goofy. <smh>

These are all phrases that I and/or Chloe’s therapist and/or Chloe’s Mimi said about her during her therapy session yesterday afternoon. None of us were frustrated with her. None of us were angry or short-tempered.

But we missed it.

All 3 of us love her and know her well. All 3 of us knew something was up. Was she tired? Not feeling well? Just out of routine since this was the first time to therapy in nearly a month?

We knew it was something. And we all gave her time and we listened. We all comforted and validated.

But we missed it.

Later that night I realized that it was her tummy. Her tummy wasn’t feeling right. She asked for food and more food and more food — much like an infant with tummy trouble. You know… the baby’s tummy feels awful, and he assumes it is because he is starving. Or at least he thinks more milk will help soothe his belly ache. Well, that’s what Chloe was doing so I knew it was her belly.

I got her ready for bed and put her to bed so she could sleep it off.

Then I got a text from her aide at school that she was going to stay home the next day. She was sick with a nasty stomach virus. Her tummy was cramping, she felt miserable, and it hurt to move.

Interesting. I immediately knew that Chloe had the same virus. She was feeling the same way. She didn’t have an attitude at therapy; it just hurt to move. She wasn’t averse to putting her feet on the ground to walk as much as she just wanted to keep her knees tucked up into her tummy where it felt a little more bearable. She didn’t lay back and close her eyes right in the middle of therapy to show that she was in control or to make a statement; she was literally glad to be still and close her eyes for a minute. She wasn’t making up the pain in her shoulder that she was crying about. And she wasn’t forgetting which shoulder was “hurting;” they were both hurting — she was hurting all over.

Poor baby.

We are all 3 lucky she didn’t just smack us across the face for not leaving her alone and letting her go to bed.

detectiveLife with a mostly nonverbal child is challenging. It’s guess-work. Even when I think I know her so well and know what she’s saying even before she “says” it, it is still guess-work at best. I am a constant detective, looking for clues. And I think I’m a darn good one most days. But it’s still guess-work, putting clues together and trying to make them make sense.

I was so happy that Chloe’s school aide was able to put words to how Chloe was feeling. The next morning when I texted the aide to find out how she was feeling (and probably how Chloe, too, was feeling), her answer was, “Like death.” Chloe had told me she felt yucky, but I didn’t realize she was feeling like death. I guess I’ll up my sympathy and carry on. ❤

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Never Give Up

My girl is persistent. Thankfully.

She tries to tell me things. I nearly always know what she’s saying. But now and then, I just miss it.

Sometimes she gives me more than one chance to get her message. Other times, if I miss it, then too bad so sad for me.

Chloe, age 12 (and a half!), is mostly nonverbal. But she is quite a communicator. She gets her point across usually — especially if you’re “listening.”

Recently Chloe tried to tell me something for about 7 days in a row. Each time, I responded in a way that was NOT satisfying to her. But she was determined for me to understand…because she would greatly benefit from my understanding.

You see, Chloe has a love affair with stuffed dogs, especially dogs that have batteries and make noise. She owns a half dozen varieties of the My Pal Scout dog. She loves them and often gets them all going at one time, making them say their  phrases together in unison. She also often googles “My Pal Scout” on YouTube and watches reviews of Scout and his female counterpart, Violet (of whom she also has several varieties).

For days, Chloe would squeeze the belly of her My Pal Scout and vocalize to get my attention. Each time I responded with, “Scout’s belly doesn’t do anything. You just push his 2 hands and his 2 feet.”

And each time she would squeeze his belly again, not satisfied with my answer.

Then she would try again later that day or the next day. Each time I answered that Scout’s belly isn’t a button.

The day that Chloe said she wanted to go shopping with 2 of her cousins and me, I knew she had something up her sleeve because she is not one to volunteer to run errands. She much prefers the privacy of her own bedroom to going out and about. She grabbed her Scout as we headed out to the car.

Once in the car, she vocalized to get my attention and proceeded to squeeze Scout’s belly. I responded with my usual, “Scout’s belly doesn’t do anything. You have to squeeze his hands or his feet.” This time I added, “Some toys have bellies that you squeeze, but Scout just has his hands and his feet.”

Chloe then made a heart sign over her own belly and looked at me expectantly. This caused me to focus in a little harder.

“Is there a Scout with a heart?” I asked.

“Yes,” she nodded.

It was then I realized that Chloe must have seen a later-version of Scout on a YouTube toy review that has a belly that you push. Or maybe a heart that lights up or something. “And you want to buy it at the store?” I asked her.

“Yes,” she nodded again, surely relieved that her mama was finally catching on.

“And THAT’s why you wanted to come shopping with us?” I smiled at her.

“Yes,” she nodded triumphantly.

I was glad I had figured out what she had been saying, but I doubted the accuracy of our communication. The parts I had understood were a belly to push and a heart, but LeapFrog wouldn’t put hearts on the belly of a dog. Maybe you push the belly and the heart lights up or something?? I wasn’t sure. But she had clearly placed the heart sign on her own belly. She was probably not paying attention to what she was doing.

A bit later, we arrived at the LeapFrog aisle of Toys ‘R Us and lo and behold right there front and center was a Scout dog with hearts on his belly. She grabbed Scout and pressed his belly. He immediately sang a happy song in response.

A very happy Chloe held Scout tight as we made our way to the front of the store to check out. She had seen this very Scout on YouTube and had very clearly shown me that he had a belly that you push and that belly had hearts on it!

And now a happy girl owned it!

In case you ever wonder, just know that persistence pays off. As does patience. As does shopping with the girls every now and then.

Welcome to the family, New Scout!

Fight

Chloe and I had our first screaming fight today.

Well, she was screaming. I was watching.

And, ok, it wasn’t the first, but it was the loudest to date.

She’s not feeling well. She had a cold this weekend and stayed home from school today to recover. She sorta went back and forth from feeling good and trying to dance to just feeling crummy and lying down.

Towards the end of the day when we were returning from picking up the boys from school, she was tired. And grumpy. (I’m not talking about her behind her back or saying anything she’s unaware of — she admitted to being grumpy. I mean, who could’ve denied it after the way she acted….)

She had asked me if she could have a turn with my phone. On the way to the boys’ school, I told her she had to wait until we got the boys just in case one of them called me for some reason. I needed to keep my phone.

Well, as sometimes happens, I forgot to let her have her turn with my phone after we got the boys.

So as we pulled in the driveway back home, she quite nastily demanded the use of my phone. I turned around and gave her the look. But the look didn’t have an effect on her. She just screamed again, “Phone! Phone! Phone! Phone! Phone!” signing phone as she swung her head back and forth.

I just watched in amazement, which was not the response she was looking for. So she took it up a notch. She slapped her arms to her sides and let out a holler.

My eyes just got bigger as I watched her from the front seat while the two of us sat in the van in the garage.

You have to understand that this girl went a big chunk of years showing no emotion; and even more years than that feeling the emotion but not knowing how to express it. But this screaming fit I was witnessing was an example of very well-expressed emotion. And it actually thrills me inside. When you have a child who is stuck in their body, unable to express themselves, and then they learn to emerge and express some emotion and communicate their feelings, it is truly amazing to watch.

That’s what was happening.

“Wow!” I said. “Are you being silly or are you grumpy?” I asked her, pretty surprised at her little show.

“No!!!” she screamed.

I asked again, “No, seriously. Are you grumpy?”

She growled and signed grumpy.

I strongly agreed with her that she was, indeed, grumpy and told her she could have a turn with my phone when we got in the house. But the promise of pleasure deferred wasn’t good enough for Little Miss Grumpy. Sitting in her carseat, she slapped her arms, threw her head all about, and screamed in a mocking way all sorts of nasty words, I’m sure. I just stood out of arms’ reach and watched her.

Knowing it usually helps to put words to her emotion, I explained the situation. “Ok! You’ve made your point! You’re frustrated that you had to wait, and I made it worse by talking to you about it, and now you’re really mad. Will you stop already??”

When she assured me that she was done with her fit, I moved in to help her get out of the car. But she wasn’t done with me. Her arms went to flapping, and her words went to flying, and I went to dodging and stifling laughter. She was really in a tizzy.

When I finally thought I was safe from the fit, I succeeded in helping her from the car and back into the house where she got a turn with the phone after a heart-felt apology.

What??!! Giving into her after throwing such a nasty fit?? Really. I mean, seriously, how could anyone turn down her request after that 5-star performance!?

photo credit: www.empoweringparents.com

Chloe’s Valentines

Anthropomorphic Valentine, circa 1950–1960

Anthropomorphic Valentine, circa 1950–1960 (Photo credit: Wikipedia)

I had the list of Chloe’s classmates, two boxes of Valentine’s cards, and 3 packages of heart pencils. I had a black Sharpie for me, a red pen for her, and some tape. I ended up having to grab a pair of scissors since some of the Valentine’s card were quite unyielding and stubborn.

We sat in Chloe’s room with our supplies. I personally dread this particular activity every year — having 2 children who really struggle with handwriting having to write their name 22 times in a tiny space … grrrrr.

And I wasn’t sure how Chloe would react to this particular activity this year — she had been ill for a few days and wasn’t feeling up to par.

But I gathered our supplies, pretended to be excited, and we set to work.

I presented Chloe with the list of her classmates and asked her who she wanted to do first. After quickly scanning the page, she picked a name immediately and pointed to it with precision.

The name: Chloe M.

Oh, sheesh. Of course she chose herself! I forget that this precious child still often thinks she’s the only person on the planet. Or at least the only one who matters! 😉 I laughed and crossed out her name, explaining that she would get cards from the other kids tomorrow.

I again encouraged her to pick the name of the person she wanted to do first. She chose a name. She chose the other Chloe in her class. Did she choose it because she particularly likes that girl, or did she simply choose her because she likes her name — that wonderful name — Chloe?? Who knows. Who cares. Let’s just do Chloe’s card.

Chloe chose a Valentine card and a pencil for the other Chloe. I wrote the To section on the card and taped the pencil to the card and instructed Chloe to write her name on the From section of the card.

We went through her whole class list this way. She chose who to do next; she chose a card; she chose a pencil. I taped the pencil to the card, wrote the classmate’s name, and handed it to Chloe for her to sign her name.

She loved it. How do I know she loved it?

Well, you mean besides the fact that she did her Happy Growl the whole time?

I know she liked it because she continued to read that class list every time, and she continued to carefully and deliberately chose a name, a card and a pencil. She loved it. She participated to the very end.

I will add that she lost motivation toward the end. I’m not sure if she was just tired after writing her name 22 million 22 times or if she didn’t have the motivation since these last few classmates were her least favorites, or what.

When we were done, there were 3 Valentine cards left. We made one for her homeroom teacher and one for her aide. She enjoyed making those and acted a little bit like she was disappointed in the selection of cards and pencils for them — maybe she felt like she was giving them the sludge and wanted something better for them, I don’t know.

When we were done with her class and her teachers, there was one Valentine left. I showed the very last Valentine to Chloe and asked her if we should give the last one to Mrs. L (our next door neighbor who loves her very much and takes care of her several times a week) or if we should give the last one to Chloe.

Not surprisingly, she pointed to herself. She was pretty tickled that she was getting one of her own Valentines after all! 🙂

So on the last one, I taped the final pencil and wrote To: Chloe. Then I wrote From: Mom. And I gave it to her.

She was thrilled, let out a Happy Growl, read the card and studied the pencil several times. It was certainly turning  into a very Happy Valentine’s Day!

Finding Her “Voice” (Part Two)

Another fun example of Chloe’s learning to use her Proloquo2Go communication app on her iPod:

Chloe has been asking to put up the Christmas tree since August!  She really has!  It has very literally been an almost daily conversation since August!

Each time she would ask about the tree, I would remind her that first we’d do Halloween, then we’d do Thanksgiving, then we could do the Christmas tree.

She would oftentimes grab my calendar from the fridge and carry it around and look at all the days that had to pass before Mom would agree to set up the tree.

At some point I even pointed out to her the big, huge, green thing in the garage:  the Christmas tree!  It is standing upright and has a big green canvas bag pulled up over it so that it looks nothing like a Christmas tree, but she was quite excited to see that big ol green thing every time we pulled into the garage — that is, every time we pulled in the garage since September!!

Chloe’s excitement grew as Halloween came and went.  And then as we talked about Thanksgiving approaching, she knew it was getting closer.  She would most days get my calendar and either bring it to me to talk about it or would carry it off to her room to study.  Would Thanksgiving ever come and go???

Well, Thanksgiving evening Chloe, Paul, and I drove home in the evening while the boys stayed in Salado with their grandparents.  When we were nearly home, I asked Paul if he would mind carrying in the Christmas tree for Chloe before we went to bed.  He agreed.

Chloe was so thrilled as we cleared a spot for the tree to go — the same spot she remembered the tree being in in the past.  She stood in the cleared spot and danced in circles and waved her arms while she waited patiently for us to get the tree inside.

Paul and I carried in the big huge green thing that Chloe had watched longingly for months, and then Paul did the honors of unzipping the big green bag.  As he pulled the green cover off of the tree and revealed our beautiful Christmas tree, Chloe growled with delight.  She couldn’t take her eyes off of it.

At last she got Paul’s attention and showed him her iPod.

I feel excited,” she had typed.

Paul’s Daddy heart melted, and he just about exploded with emotion.

Excited.  Excited. Excited,” she typed.

So thankful that Chloe is able to express her feelings and her thoughts with her Proloquo2Go!  Keep it up, girl!

Is She Sick?

I feel like I have posted this same “song” before.  Same song, SEVENTH verse!  But here it goes again . . .

To Whom it May Concern:

My 9-year-old daughter is nonverbal.  Yes, she’s learning to communicate.  I appreciate the charts and pictures you are using to teach her to communicate.  I have lots of hope that one day, my daughter will completely on her own point to a picture that says, “I feel sick.”  I think she will do that some day.  Or maybe she will pick up her pencil and write the words:  “sick.  nurse.  home.”  Or something similar.  I am hopeful that this whole communication thing will click with her and she will understand the importance of uttering the words, “I feel sick.”

But right now, she is nonverbal and she isn’t going to do that.  For now, we have to be detectives.  You -her teacher, and I -her mom have to be detectives.  Every day.  Does she look well, or does she look ill?  Is she behaving like she normally does, or is something different?  Is she upset because she’s frustrated, or is she not feeling well?  Is she sneezing or coughing?  Is her nose snotty?  Is she putting her head down on her desk because she doesn’t want to do the assignment, or does she have a headache?

It’s not easy.  It has never been easy.  But Chloe is depending on us to be the detectives and to take good care of her.  She is depending on us to meet her needs.

Last week when you took her to the school nurse because she was acting strangely, it gave me hope that you really got it.  You were watching her clues.  You knew that since she kept putting her head down on her desk, it probably meant that she wasn’t well.  The nurse checked her temperature, and it was normal.  But you knew that she just wasn’t right.  I loved that the nurse called me and let me decide what to do.  We all had to be detectives together, and we decided that Chloe didn’t feel well and that she should come home from school early.

I was filled with relief and with hope because I felt like you really finally got it.  I was and am so thankful.  Chloe was able to come home and take a nap.  She was able to lie around the house and do nothing on a day that she didn’t feel well.  And I appreciated it.  And Chloe greatly appreciated it.

But then two days later, you missed her clues.  Just when I thought you had it figured out.

When she got off the bus at 3 o’clock, her notes home reported odd behaviors.  Apparently all morning, she was screaming, “No!” and wasn’t completing any work.  And then in the afternoon the report was that Chloe had slapped another student.  Wow.  Those behaviors are not normal for Chloe.  I sure wish you had realized that she wasn’t feeling well.

Don’t forget that Chloe isn’t going to say, “Can I go home?  I’m sick.”  Remember that since she’s nonverbal, we have to be detectives.  When Chloe acts differently on a certain day, we have to wonder if maybe she isn’t feeling well.  Please don’t forget to watch for her clues.  My knowing that you’re watching for her clues and will act on them when necessary gives me confidence when I send her to school.  If I’m not confident that she has detectives on her side at school, then if I have any doubt of how she feels, I have to leave her home for the day.  I need to know you are going to watch out for her.  Chloe needs to know that you are going to watch out for her.

I know she’s complicated.  I know she frustrates you sometimes.  But I have to know that you are going to watch out for her.

Sick Girl?

Well, earlier this week when I wrote about my being sick, I voiced my concern about what happens when Chloe doesn’t feel well.

I didn’t really have noticeable symptoms this week — I had a migraine one day, a bit of a sore throat for a few days, just an overall feeling of yuckiness, but nothing that anyone would have noticed if I hadn’t been constantly complaining about it.

The day that I mentioned my concerns about Chloe not feeling well, she came home and had received a number (discipline mark) in PE for refusing to participate.  She also didn’t have a great day overall; I think the teacher note said she was “not cooperative.”  I knew that I knew that I knew that probably she didn’t feel well.  I figured she probably had whatever random virus I had.  But she seemed happy enough at home so I decided to go ahead and send her to school on Thursday.  Wish I hadn’t.

Apparently she had a pretty terrible day at school.  She didn’t do any work.  The daily communication said that she seemed frustrated.  She screamed in the hallway and angrily shook her walker in the hallway.  And then apparently she spent some time in the office after the screaming and shaking episode.

Now hear me out here.  Don’t hear me bashing the folks up at the school because I am not.  As I’ve said before, this is their first go-round with the likes of Chloe.  And I’ve said here before how even I oftentimes am left guessing what Chloe is thinking and feeling.  But I think what happened at school was that the screaming and shaking episode was perceived as a behavior issue and the decision was made to take her to the office.  (Let me also say that I have no reason to believe that her time in the office was meant for punishment or anything . . . I’m guessing it was sort of a place to calm down and refocus maybe.)

Since everyone had such a rough start to this school year, I think maybe they’re still not sure what is typical Chloe behavior and what is wow-something’s-not-quite-right behavior.

I very much wish that they had called me to let me know that she was having such a rough day.  I’m guessing she felt horrible like I’ve felt all week.  I’ve seriously hardly gotten off the couch because I feel so yucky.  Had they called me, I would have gone up to get her and brought her home to go to bed.  I’m guessing that’s really all she wanted.

Again, in the school’s defense, they did what they know to do.  And in the past, if they had a kid screaming in the hallway, then they probably removed them to the office to calm down.  It’s all part of the procedure, I’m sure.

And for those of you who are getting upset as you read this, please know that I’m not mad at the school, at the teachers, or at anyone for what happened.  It is just another example of something that I need to communicate, something else that Chloe’s new school has to learn.  I think what they will all learn as the year progresses is that Chloe is a sweet, obedient, quiet kid.  I oftentimes refer to her as “my perfect child.”  And they will come to realize that when Chloe has such an “off day” as she had a couple of days this week, that probably something isn’t right and she doesn’t feel well, and they need to send her home.

So I kept Chloe home from school today.  All she did was lay around all day.  She seemed happy enough, but she certainly didn’t have energy to be up and moving around.  So, yes, she probably doesn’t feel well.  And I’m very glad I kept her home.

My plan is to have a conversation with the folks at school and explain to them what I think happened this week.  I feel sure they’ll be understanding and open to my thoughts and suggestions.  I think they are well aware that they need my support and input and help for us all to have a good experience and for Chloe (and them) to be successful.

When Chloe appears to act out, I long for them to see her struggling to tell them something.  When she has a day of being unhappy and uncooperative, I long for them to know that something isn’t right.  When she has a day that is making them all miserable, I want them to consider that maybe she is the one who is miserable.  And I will ask them to call me at those times so we can try to figure it out together.

They will.  They will learn.  They will learn to understand her.  Just like her other teachers in the past learned and learned to understand Chloe, they will, too.  They will.  I know they want to.  I appreciate them and their care for Chloe.  I know they want to help her and to understand her.  I can see it in their notes home to me.  I can see it in their interactions with her.  They are connecting with her.  And the more they connect with her, the more they will learn to understand her and to read her.  And, believe me, I understand how frustrating it is to try to figure out what she’s not communicating.

Just another challenge of having a nonverbal child. . . .

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