Posts Tagged ‘speech therapy’

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. ❤

Advertisements

Honk! Honk!

1999-2000 Ford Windstar Steering Wheel

Image via Wikipedia

The horn in my van doesn’t work.  I think it’s just a fuse because my cruise control doesn’t work either.  At first it was annoying not to have a cruise and a horn, but then it actually really bothered me.

You see, on the highway, traveling at 60 miles per hour, a car started to veer into my lane.  I started hitting on my steering wheel to get the driver’s attention by honking my horn.  But my horn wouldn’t work.

I couldn’t alert the driver that I was even there!

Not having a horn is a safety issue.  Sometimes it’s very important to be heard when you’re driving a vehicle.

And what if I just saw someone I knew and wanted to honk a Hello at them?  I couldn’t even say, “Hello!”

Wow.  Not having a horn really bothered me!

And you know what?  My van is overdue for inspection, and it can’t even pass without a horn.  The Texas Department of Transportation thinks my van having “a voice” is pretty important!

The whole experience made me think of Chloe.  She’s nonverbal.  She’s stuck in a body that has no voice.  While we are teaching her to say, “Hello” to her friends when she sees them, and we are hoping she will learn to use her voice to alert people when she’s in danger or when she’s hurt, the truth is right now, it’s like she’s stuck in a van with a broken horn.

There have been several times lately when I’ve felt helpless driving with no horn.  There was one time when I was a little nervous driving with no horn (when the car was veering into my lane).  I have felt that if I had something that I wanted to “say,” that I couldn’t “say” it no matter how hard I hit the steering wheel.

But mostly I’ve just resigned to the fact that I don’t have a horn, and that I can’t be heard.  And I hope I have nothing very important to honk  about.

Thankfully the horn on my van is a simple fix.  Literally a couple of bucks will probably fix it.  Then I’ll have my horn back — my voice back.

Not so simple with Chloe’s voice.  She works harder than you could imagine when she is trying to carefully repeat the words that I have her repeat.  She very carefully places her tongue where we tell her; she very purposely positions her lips like we teach her; but then the sounds that come out usually are unrecognizable.

And I wonder how she feels.  Does she know it doesn’t sound right?  Is she frustrated to work so hard at something and not succeed?

And I wonder how long she’ll work at it before she just gives up and decides her horn is forever broken.

I’m hoping and I’m praying that she’ll continue to work and continue to try and continue to improve.  She’s such a trooper and wants to talk so badly.

Meanwhile, I’ll go to the mechanic this week and get my van’s horn all fixed up.  Man, I love an easy fix!

Signs

I’ve discussed here before some of the difficulties of having a nonverbal child.  It is especially difficult trying to figure out if the child is not feeling well, in pain, tired, uncomfortable, or just crabby.

Chloe and I are in that communication challenge right now.

The signs that I’ve been seeing?

Well, at church, Chloe got upset in her class.  She went and laid down in the tent in her classroom and cried and cried and cried.  When her sweet teacher approached her to console her, she screamed at him to be left alone.  Of course, the nature of a good parent is to console a sad and screaming child so her sweet teacher picked her up to try to comfort her.  She was displeased with that choice and made her body stiff, kicked, and continued to scream and cry.  That’s when I was called onto the scene.  She was, indeed, sad and unconsolable.  When the teacher explained to me that it had all started when something funny happened in class and all the other children were cracking up laughing, I felt that the mystery was solved.  That certainly explained it because extreme emotion makes Chloe cry.

But later I noticed her eyes seemed a little glassy and her face had that sick-kid look to it.  Maybe she doesn’t feel well, I thought.

But then that evening she really perked up and had a nice time playing so I sent her to school yesterday.

The note from her teachers yesterday convinced me that Chloe is either not feeling well or is in pain or something.

The notes?

“Chloe has laid down in the hall 3 times today refusing to walk.  😦  She seems very tired today.”

“Chloe’s morning started out rough in the cafeteria.  Mrs. D had to get on to her for hitting another student.”

“She was extremely agitated during the morning.  Also, very tired!”

“When she got her morning diaper change, Chloe laid on the changing pad for about 15 minutes just resting.  She seems really sleepy.”

Now, if she had gotten less sleep than normal, then I would assume she was just tired.  But she got more sleep this weekend than she normally does.

So I decided she doesn’t feel well and kept her home from school today.

Whether she’s ill or not, she will LOVE being home today — she’s very much a homebody.

But then . . . . if she’s not ill, maybe it’s the prepuberty rearing its ugly head again.

Gotta love the guessing game. . . .

(BTW, some medical updates on this precious girl will come later this week.  Her plate is a little full right now.)

An Amazing Attempt

Chloe, my eight-year-old daughter, is nonverbal.  She’s very bright and wants to communicate, but she just can’t make her mouth and throat do its thing.  So she makes some grunts, makes some cute little puppy dog sounds, does some sign language and lots of gesturing.

She normally doesn’t try to “talk” to people unless she knows they will know what she’s “saying.”  So unless it’s mom, dad, brothers, one of her teachers, or someone like that, she will usually not even try to “talk” to them.

Now and then there are some really fun, encouraging moments watching her attempt to communicate to other people.

Last week at one of the many appointments that complicated my schedule, there was a momma and her little girl in the waiting room with us.  The little girl had a talking, singing Dora doll.  Chloe loved (yet hated) the singing Dora.  She wanted the little girl to push Dora’s tummy over and over and over, but Chloe kept her arms up over her head, shielding her ears from the sound and her eyes from the sight of this wonderful Dora toy.

The girl quickly tired of Chloe’s request and announced that she wanted to save Dora’s batteries.  Waste not; want not, I suppose.

When the girl put Dora safely on a chair by her momma, Chloe went over and sat in the chair beside Dora.  I told Chloe not to touch Dora, and she beautifully obeyed.

But she LOOKED at Dora.  And she LOOKED at the momma.  And she LOOKED back at Dora.

Then, Chloe got off of her chair and stood right in front of the momma who was filling out some paperwork.  Chloe looked into the momma’s eyes, pointed at her while making her little talking-humming-sound; then pointed at Dora and made another little talking-humming-sound.

It was amazing!!!  She was asking this total stranger to push Dora’s tummy for her!  She asked the momma to make Dora sing!

I nearly cried.  I nearly clapped.  I nearly praised her efforts.

But I didn’t.  The nurse called Chloe’s name, and we went back for our appointment.

Of course, the momma didn’t have a clue what Chloe’s pointing and “talking” meant.  But it was such an amazing moment for Chloe and me!

Our Second Lesson

I really wish I had video’d this second lesson with Chloe and her Proloquo2Go.  It was awesome!  If you missed the video of our first lesson with her new talker, you can read it here.

I meant to have a lesson planned out very specifically, but she spotted her hot pink talker and wanted to use it.  We sat on my bed together and just explored -a little randomly- through all the menus and folders.

Chloe was reluctant to make the Proloquo2Go speak for some reason.  She would choose phrases or words, but then instead of pushing the bar to make it speak she would just erase and go on to something else.  (I think her hesitation was a result of our first lesson when the buttons were not responding to her touch.  I have since heard from several people that we need to cut out the plastic on the face of our case.)  But I tried to catch her each time and make her encourage her to push it to talk.

After we had been exploring and “talking” for several minutes, Chloe began scrolling rather intently, looking for something specific, it seemed.

From the HOME screen, she chose BASICS.

From there, she chose CHAT SPACES.

Then HOME CHAT.

Then she pushed “I LOVE YOU.”

She reached up with her little finger and growled a little bit as she pushed the bar to make it speak out loud.  “I love you,” came loud and clear from the speakers.

Chloe froze, looked me straight in the eyes, and then reached for me with a great big o hug!

That really happened!  She told me she loved me and gave me a big hug!  Wow!  Awesome!

To Talk or Not to Talk?

We have an exciting new piece of equipment.  It is called Proloquo2go.  Heard of it?

First, let me explain that Chloe, my 8-year-old nonverbal daughter has used AAC devices for years.  AAC  means Augmentative and Assistive Communication.  Basically, an AAC device is something that helps a person “talk.”  Some AAC devices are just paper with words or pictures that a person points to to communicate.  Even a slip of paper with a note scribbled on it could be considered AAC.  But most of what Chloe has used are electronic pieces with a voice output.  These devices are big, bulky, heavy, and expensive (easily $6,000).  And we have failed to be successful with any of them.  Is it because they are too bulky for Chloe to carry around?  Is it because she hasn’t found them useful?  Is it because it is complicated to push all the right buttons to make a simple request when signing or gesturing or just doing without is easier?  Is it because Chloe views anything electronic as “a toy?”  I think it’s a combination of all of those things.  But she still has the need for a communication device so I periodically research them on the internet.

A week or so before Christmas, I came across this blog entry at Terrible Palsy, a blog that I follow.   It really made me curious.  Here was a device that was small, affordable, lightweight, and practical.  Would it be a good fit for Chloe?

I found the Proloquo2go website and got even more excited.  There are training videos that made it look so easy and promising.  We found some youtube videos about it.  We just got more and more excited about it.

Proloquo2go is an application that you download onto your iPhone or your iPod Touch.  It has all the functionality that the big, expensive machines have.  Easy and cheap!  Sounds promising!

So a couple of days before Christmas, Paul bought an iPod Touch for $200.  That same day, Paul downloaded Proloquo2go from iTunes for $187.  We also bought a case — hot pink, of course — with external speakers and a carrying strap online for $15.  And we were in business!  For only $400 we had a working little “talker.”  Amazing.  I am so excited about it!  I am hopeful that it will be good for Chloe!

It came loaded with lots of words, vocabulary, sentences, and phrases.  I have messed with it, programmed it, and changed it, trying to make it more useful for Chloe.  It still needs some more work, but I will need to spend some time watching the training videos to figure some of it out.

I finally introduced Chloe to the talker today.  She is very interested, of course.  She loved working with it.  I’m sure it just seemed like a toy to her.  But I plan to have several more training sessions with her before setting her free with it.

At today’s training session she got frustrated that the screen wouldn’t respond to her touch every time.  I’m not sure what the deal was.  Part of the deal, perhaps, was her wet fingers that kept going into her mouth while I wasn’t looking.  Also, I think maybe the iPod requires more of a tap than a push?  Not sure, but hopefully with practice and with my tweaking it it will be easier for her.

Stay tuned for more updates on the Proloquo2go!  Here’s a video I took of our first training session:

Tell Me All About It

Having a nonverbal child is challenging.  It is frustrating.  It is sometimes heartbreaking.  It is sometimes inconvenient.  It is sometimes helpless.  Having a nonverbal child is tricky and makes a mama guess and then second-guess at the needs of her child.

I know there are many times when I misinterpret what Chloe is trying to tell me.  She will try a couple of times to say something to me, but if I don’t get it right away, then she’ll oftentimes just gives up.

Does it frustrate her?

Does it make her feel alone when she can’t make herself understood?

Chloe knows many signs and uses sign language to communicate.  But mostly she signs only one word or two words even when she’s telling a story or saying several sentences.  When she does, it is up to me to add all the missing parts and speak out loud what it is she’s trying to say.  I think I’m right most of the time.  But sometimes I don’t have a clue what she’s talking about.

And she doesn’t use sign language to express feelings at all — just the facts.

Chloe has only recently gained the ability to cry when she’s in pain.  Even now, the only pain or discomfort that will actually cause a cry is something like a hard hit to the head or a pinched finger in a door.  Although, two different times this summer she sat too close to a fire ant mound and got lots of bites; she never made a sound, reached for the bites or moved a muscle.  So I never know if she has a headache or a tummy ache or a muscle soreness.  I never know if she just doesn’t feel well.  I mean, I can guess that she doesn’t feel well if she’s lying around more than usual.  She will every now and then want to cuddle when she doesn’t feel well.  But mostly, I am left guessing about whether she’s hurt or sick.

Yesterday, her teacher wrote a note in her binder that Chloe “was different” in class. And she didn’t participate like she normally does.  Even the bus driver said maybe Chloe didn’t feel well — she was different on the bus.  Then last night when my friend babysat her, the report was the same.  We all watch her and try to interpret the signs.  Is she not well?  Is she just overly tired?  Is she bored or just feeling lazy?

I went ahead and sent her to school this morning.  The frustrating thing is that the mornings are so quick and busy that I don’t get to “watch” her like I need to in order to see all the signs.  I sent her to school today not knowing for sure that she felt like going.  I wrote a note to her teacher asking her to call me if Chloe doesn’t perk up.  If she doesn’t feel well, then she needs to be at home with Mom.

Certainly times like today, I wish she could talk to me and tell me how she’s doing.  I want to ask her how she is and then hear her sweet voice respond.

But instead when I held her little face in my hands this morning and said, “Tell me all about it. . . ,” she just looked at me with her beautiful blue eyes and stayed silent.

%d bloggers like this: