Taking Responsibility

During the daily rush of helping Whitney get dressed, off to school on time and countless other things, it's easy to set aside teaching important lessons.  Melanie is better than I am about taking advantage of teaching moments.  So when I see something new it often comes as a surprise.  Even when it's been something Melanie has been working on for some time.

For example, Whitney got into some things in our basement and made a big mess that Melanie and I had to clean up.  Whit knew she had done something wrong even before cleanup was done and punishment time began.  She came over and got our attention and signed, "I'm sorry."

Now that's a small thing, I realize.  But I was so surprise and pleased.  It represents the fact that Whitney, on her own, realized she had caused a problem that Melanie and I were having to handle.  She realized that she was responsible and chose to apologize all by herself.  She's beginning to take responsibility for her actions and apologize when she does something wrong.  And she's picking it up pretty early in life, too.  I think we all encounter adults who still haven't mastered this.

I'm grateful to have a daughter who is responsible, self-aware and has such a good heart.  Maybe one day she'll learn not to make the kind of messes she sometimes does.  But in the mean time a sincere "sorry" sure makes a big difference.

IEP Review and Great Progress Communicating

We just finished reviewing Whitney's Individual Education Plan (IEP) for another year with the folks at her elementary school.  This happens annually and we use the time to review our goals for Whit as well as her accomplishments.  Whit has had another good year at school.  She's making progress on her goal of recognizing 175 sight words when she reads.  Potty training is also coming along, although many days are still a struggle.  But biggest area of improvement for Whit over the course of this last year has been with speech and communication.

A year ago, Whitney's ASL interpreter was reassigned to help a child who was more profoundly affected than Whit.  Melanie and I had mixed feelings at the time.  Whitney had used sign language heavily to understand and communicate in the classroom.  But in the year since, Whit has listened more attentively in class.  She's started to vocalize more when asked a question as well as started to use her communication software more effectively.  Whitney's teachers feel that this is due to Whitney having to perform all these tasks on her own now instead of being able to depend on her interpreter to do it for her.

It's exciting to see her understand and communicate more about what is going on around her. We're grateful to for the team in Whitney's classroom that works so hard for her.  She's made great strides over the course of her time with her current teachers.  They've expected a lot of her and Whitney hasn't gotten away with being lazy just because she has some physical disadvantages.  That's spurred her on to some great accomplishments over the last three years that she's been in her current classroom.  Next up, we're making plans for where Whitney will go to class in the fall and how it will affect her.  More on that soon.

Fighting Awkwardness One Nose Tweak at a Time

One of our good friends who has a little boy with 1p36 Deletion Syndrome recently wrote a great post about the sometimes awkward reactions people have to children with special needs.  Please go give it a read if you'd like to get a great account of how frustrating it can be one someone ignores or avoids one of these special children.

That post was some great food for thought for me recently.  Whitney is a very social child.  She loves interacting with people and I wondered if she's ever noticed that people avoid or ignore her.  After thinking about this for a while I realized that Whitney simply will not let people ignore her.

You see, when Whitney was really little her grandparents would come over to visit and they decided that encouraging Whit to reach out and honk their noses would be a fun game.  And it was.  Whitney loved it.  Which was all fine and good when Whitney was a couple of years old.  But Whitney will be ten in January and she has adopted the nose honk/tweak as her official greeting!  And she's an equal opportunity tweaker.  She'll grab the noses of church leaders on Sunday, the principal at her school and various of the doctors and nurses she sees.

We're still trying to teach Whitney about personal space and that there's a time and a place for tweaking someone's nose.  But be warned, if you are trying to ignore my little girl or avoid her.  Because she'll probably march right up to you, grab your nose and begin to laugh her head off.  There's just no avoiding a hilarious little girl like Whit.  My advice, don't even try.

Halloween and Making Her Own Decisions

Getting ready for Halloween this year was a lot of fun for Whitney.  Melanie and I are trying to let Whitney make more decisions for herself about things these days.  So we let Whit wander the local costume shop when it came time to pick a costume.  She finally settled on an outfit she thought looked cute.  Melanie and I didn't even recognize it but she chose a Sugar Rush Racer costume from Wreck It Ralph.  And she was very happy because of how pink it was.  The other finalist from the costume shop was a My Little Pony costume.  Also, very pink.  That seems to be a consistency in her taste lately.

When Halloween came, Whitney also knew enough to be very excited about trick or treating.  She carried her own candy bucket (until it got too loaded down with candy) and even vocalized her own "trick or treat" and "thank you" at each of the neighbor's houses.

These are just little things but it's so fun to see the progress in her life.

Summertime Progress

Whitney is out of school for the summer and getting into new kinds of trouble.  Melanie and I are usually pretty prepared for most things.  It's when she's doing new things and progressing that she sometimes gives us mischievous surprises.

The first of these has been taking showers.  Not the kind where we help get the water ready and help her get clean.  I'm talking about the kind where Whitney sneaks into the bathroom when we're not looking and turns the shower on herself while she's fully clothed.  She's done this a couple times in the last few weeks.  And by the time Melanie can get to her, Whit is usually soaking wet and smiling about what she's accomplished.  I don't think we mind the interest in showers too much, but it'd be nice if she could learn to take her clothes off first.

But there's progress on that front too.  Melanie has been working with Whit to teach her to take off her clothes at bedtime.  She's made the most progress with her shirt.  We know this because Whitney has taken to running around the house topless.  I'll be sitting someplace reading and she'll wander by with no shirt, sporting a proud smile.  Melanie finally got fed up one day and told her to go find her shirt and put it back on.  To Mel's surprise Whitney disappeared and returned a few minutes later wearing her shirt again.  She'd followed instructions, found her shirt and put it back on all by herself.  Mel says she kind of teared up for a moment just thinking about the accomplishment.  Special needs parents are so good at savoring the small victories.  Who cares if her shirt ended up inside out and backwards?

The Interpreter Dilemma

From very early on in her school career, Whitney has had an interpreter assigned to her.  Her interpreter stays with her throughout the school day and signs what's being said in the classroom.  It takes a lot of patience and dedication.  We know that Whitney divides her attention between the interpreter and her actual teacher who is speaking to understand what's going on in class.  But she's always used a mix of what's being spoken and what's being signed to pick up on everything.

This past school year we've started working with an assistive speech device (An iPad with special software) instead of encouraging Whitney to sign. Our hope is that this will increase the amount of people who can understand Whit.  The other side of that equation is the need for Whitney to hear and understand more without having someone sign it to her all the time.  So Melanie and I have decided that Whit can go without an interpreter assigned to her in class this fall in 4th grade.  This may be an adjustment at first, but there will still be others in class who can sign to her if she doesn't pick up on something.  And we're hoping this will help her to focus on who is speaking a little more.

But it's been a really hard decision to make.  We will really miss the wonderful, dedicated people who have worked so hard with Whit over the years on understanding sign and consequently understanding the world around her.  And it's been part of Whitney's classroom routine for years now.  I think ASL will always be a part of our home and family.  But I think it's really time for Whitney to listen and to speak.  Melanie and I believe she's capable of both.  I guess it's just finally time to take the plunge.  I'll be sure to let everyone know how she does.  We've already been practicing more with the the iPad at home.  I think it's going to help this young lady to better speak her mind.

Parent Teacher Conference

Yesterday evening was the first official parent teacher conference of the new school year for Whitney.  Whitney's adjustment to a new teacher and classroom was something Melanie and I had been really worried about.  Whit's teacher runs a very structured classroom and expects a lot of our little girl.  And at first that was tough for her.  In fact early on, she had a major tantrum in the classroom.  Since then, they've been focusing on citizenship in the classroom and Whitney's been responding well.  And that has paved the way for a lot of things.

First off, she is using Proloquo2Go and an iPad for almost all communication in the classroom now.  She can run it well and say pretty much anything she needs to.  She still has an interpreter in class and that still helps Whitney to listen and understand what's going on around her.

As far as behavior, she has gone through a transformation.  Whit doesn't like to do fine motor exercises like writing and coloring.  But where she could get out of those tasks last year by throwing a fit, this year she knows she's expected to get her work done.  So with hand over hand help she'll write her name and color her pictures.  She no longer throws fits and she's even stopped hitting her head in frustration.  I wish we could be that successful at home!

Whitney can also count all the days in the month on a calendar and read the sentences in her school reading books.  And they're going to start working on addition and subtraction soon.  Whitney's favorite part of the day is morning yoga where laughingly invites her therapists and interpreters to join in the fun.

Whitney's teacher is serious about expecting the same thing from her special ed 3rd graders that typical 3rd graders can do.  That may seem harsh to some, because there are things that are certainly more challenging to Whitney.  But it's working!  And it's so exciting to see Whitney begin to meet these higher expectations and realize more about her potential.

She Knows What She Likes

Whitney is very clever when it comes to getting what she wants.  She knows what she likes and you can see her thinking out the process to get it.  Once example of this determination is playing music on her iPhone.  

Whitney has some favorite bands and albums that she listens to over and over.  But she can't read the names of the bands or albums on the phone's screen.  She's found a way around that though.  She's memorized the album cover art for the music she loves best.  When it's time to listen to something, she turns her phone on its side.  When she does this, she knows that the Music app shows a cascading row of album art that you can flick through.  Whit's a huge country fan, so she flicks through the art until she gets to her favorite album by Sugarland and can begin to play it.  She's also memorized the order of the tracks so she can get to her very favorite song on the first try every time.  This makes for a very happy music listener and many, many plays of the song Mean Girls in our home every day.

To reduce the monotony, I've tried to introduce new songs and artists.  Last night, I had her listen to Stevie Wonder's Superstition.  I figured it had a fun beat she'd like.  But Whit shot me a glance just after the intro, turned her phone on its side and flicked back to her Sugarland albums.  I guess you can't blame me for trying.  This girl definitely knows what she likes.  And she's learning how to get it.

The iPhone Adventure

Many of you have read about Whitney using assistive communication software, called Proloquo2Go, on Apple's iOS in order to communicate with people who don't sign.  Around the house, Whitney often uses the software on Melanie's iPad.  But there's no way we'd let Whit out the door for the day with such an expensive and fragile piece of equipment.  For that dirty job Whitney has her own hand-me down iPhone 3GS.  And she uses it non-stop to communicate, listen to her favorite songs and more.

Unfortunately for us, that rugged little phone is nearly three years old now and its battery was beginning to show its age.  About three weeks ago it dropped below an hour of life between charges.  Melanie and I were not thrilled with the idea of having to spend a bunch of money on a new device just to have it go through the beatings that everyday life with Whitney brings.

Luckily I discovered a way to repair Whitney's phone.  The folks at iFixit.org supply replacement parts, tools and detailed repair guides for all kinds of consumer electronics and I picked up a replacement kit for Whitney's iPhone battery for under $25.  The repair went smoothly and when I told the iFixit team about what I had done, they featured little Whitney's phone on their blog.  You can read about it here: http://ifixit.org/2080/fixing-my-daughters-voice/.  So now the battery in Whit's old phone goes a long way and the cost to repair it was minimal.  Thank you, iFixit for all your help!

I wish the story ended there though.  But instead I'm sad to report that Whit's phone took a bath today.  Whitney's fascination with running water got the best of her and she dumped that old iPhone in a drinking fountain.  As soon as Melanie saw what happened, she turned the waterlogged old thing off and stuck it in a bag of rice.  It's still in the bag drying out, so we don't know if it's totally dead or just mostly dead.  If it's only mostly dead, I'll be turning to my new friends at iFixit.com for more repair instructions and parts. And that, my friends, is what you call an adventure!  I'll be sure to let you all know soon if the phone survived.

Update: The phone lives!  After two days in a bag of rice, I took the phone out and charged it up.  It turned on and continues to run great.  Considering how much water that little thing took on in the drinking fountain, I'd say it's a miracle.  But I'm not going to tempt fate.  A rugged new Otterbox Defender case, with plugs for the headphone jack and charging port, arrives tomorrow.

Scared of the Dark

The other night as Melanie and I were getting the kids ready for bed, Whitney started whimpering.  It wasn't like she was throwing a tantrum or screaming.  This was different.  She just got teary-eyed and started sobbing quietly as we were tucking her in for the night.  Melanie and I were worried and tried to ask her what was wrong.  This is tricky because Whitney has a habit of pointing to her ears even when they're not infected.  Or she'll often respond with the sign for dog, just because.

Luckily, Melanie was persistent in her questioning.  Finally, Whitney pointed to the window in her room and I think we understood.  There have been several nights recently when the wind has whistled around our house and rattled the windows.  We think this has scared Whitney and made her a little bit afraid of the dark.

Melanie kindly explained that no one is going to hurt her and that nothing is outside of her window.  Melanie even pulled the curtains aside so Whit could see.  She seemed a little more confident after that and settled in for the night.  We were grateful, that although communication with Whitney is sometimes difficult, we are able to understand our daughter's fears and help her to be comforted when she needs it.

Birthday Shopping

It's fun to watch as special needs children grow and become much more able to express their preferences and personal style.  In Whitney's case, as with many challenged kiddos, communication starts with getting messages across about basic needs.  But as time has gone on Whitney has been able to share more about her likes and dislikes and things that are her favorite.

This was brought to my mind again as Whitney's birthday is coming up.  She is in need of a new dress some new shoes to go with those new braces (that should be coming in the mail any day now) and a new case for her iPhone. (She uses it to speak and to play.)

We're still in the hunt for Whit's birthday dress and shoes because finding things that fit can be a bit of a challenge.  But a case for Whitney's hand-me-down phone is taken care of.  Whitney sat down with Melanie and looked at case designs on the computer.  Whit told her the colors she'd like and pointed to patterns that looked fun.  After narrowing things down for a while, Whit decided on a case that is black with pink flowers and butterflies on it.  It totally reflects her style and I know she'll love it.

A shopping experience like that something most parents would take for granted, but for special needs parents it's a different story.  It makes me so happy to know that even though my daughter doesn't really speak, she can enjoy shopping with her mother and picking out things she loves using signs and gestures.

Next up, clothes shopping and a birthday party.  Should be an adventure!  I'll report back on the celebration.

Whitney Reads Her First Book

Whitney has been working with her sight words and has progressed on to reading short, simple books.  This one is her first, about people and their homes.  She reads it every day for practice.  But every time she smiles and is so proud of the accomplishment.  Melanie and I are proud of her too.  She may have special needs but she clearly has no limits.

Parent Teacher Conferences

A few weeks back Melanie and I were able to sit down with Whitney's second grade teacher and some of the classroom therapists and chat about her progress so far this school year.  As with any child, Whitney has her ups and downs at school, but she's really doing quite well.  Here are a few specifics:

Staying in her seat is getting better.  Last year this was a big problem.  Whit just wasn't content to stay at her desk during class and she would just get up an wander the room.  This year they're focusing more on helping her stay on task and it's having a positive effect.

She's making amazing progress on reading sight words.  The entire class is working with a new program where they memorize five sight words at a time with new words each week.  You can see a picture of the words Whitney's currently working on in this post.  Since Whit doesn't speak, they teach her to recognize the word as well as the sign the word at the same time.  They also teach the meaning of the word so she can put the whole thing together in her mind.  Her teacher and speech therapist report that she's picking up words like crazy and I have full confidence that one day not too many years down the road, Whitney will be able to sit down with a book and read it to herself.

Math is an area she struggles in.  Whitney just isn't interested.  She is bored by counting and adding unless you do it with her on an iPad.  She doesn't like to count objects or point out her numbers on a piece of paper.  But when you put things on a screen, her teachers have discovered that she's interested for at least long enough to complete the exercise.

Speech with the iPad and Proloquo2Go continues to progress.  Whitney has to ask for things in class by signing or pressing the buttons to say the words.  That way she learns that it's not just play time when she has the iPad. And they've had some success.  Whitney will make a request that's actually a full sentence, such as, "I want big bubbles."  We were so excited to hear this, because it will open the door for her to speak to anyone and everyone instead of just the few who sign.

Overall, we're very pleased with Whitney's progress at school.  She loves going and she's getting a lot out of it.

Talking with iPad and Proloquo2Go

Some good friends were kind enough to let us borrow their iPad with Proloquo2Go speech software installed. (I know! Great friends!) Melanie and I have been trying to give Whit a chance to try the software and see if it fits her.

I really like that the you can tell the software how many buttons you want per screen and make them bigger or smaller depending on the child's need. You can also add any vocabulary you like since the software uses text to speech to pronounce the word. You just type it in and Proloquo2Go knows how to say it.

However, the text to speech may be the biggest turn-off for some users. The voices are pretty customizable, but they're not quite human. If that's a concern for you, this may not be the direction you want to go.

The computer voice didn't bother me much and the fact that the software works on sleek, light Apple hardware far outweighs any negatives I saw. The biggest issue we're fighting with Whitney now is that she uses the software as a toy instead of really trying to communicate. I think it's going to take some serious work to get her past that. But we're willing to give it a shot.

Above is a short video of Whitney talking about foods using Proloquo2Go. She's mastered navigation within the software after just a few hours of practice. I'm pleased with how confident she's getting.

Assistive Communication: A Parent's Perspective

As a parent of a non-verbal child I've become familiar with some interesting alternative forms of communication. Melanie and I have done the sign language thing with Whitney with quite a bit of success. But sign language doesn't get Whitney very far outside of the family. Melanie and I have felt like Whitney may need something new to communicate with and make friends with kids her age.

And so we've been learning about assistive communication devices. Basically, they are electronic boxes with varying numbers of buttons that each speak a word or phrase. And in fact Whitney has been using one device called a Go Talk 32 since January.

Go Talk devices are made by the Attainment Company. They've been around since the 70s building and selling things like this to help people communicate. Today, $330 can purchase a Go Talk 32. It's capable of being programmed to say 163 different phrases so long as they fit in the 27 minutes of recording time available. Each phrase is mapped to a picture in a grid laid out on sheets of paper. The sheets of paper are then inserted into the side of the device to create the buttons you can see in the picture. The Go Talk is made of durable plastic, has a carrying handle and runs on a couple of AA batteries.

In the time that Whitney has used a Go Talk she's been limited to a single sheet at a time unless someone changes it for her because the sheets are too difficult to change by herself. Her teacher has felt like Whit is limited in what she can say, and has gone off looking for other solutions. Simply put, the Go Talk is inexpensive but is not flexible enough to say what Whitney would like to.

Which brings us to the new device that the school sent home yesterday. This monster is the DynaVox M3. It replaces the troublesome sheets of paper with a touch screen that presents images on buttons that represent phrases. The hope is that this device will will allow Whitney more flexibility in her communication. Its manufacturer, DynaVox Mayer-Johnson, also reports that is can interface with the internet and various telephones. This is all well and good, but the M3 weighs almost five pounds and has a six hour rechargeable battery. That's right! It weighs more than a half gallon of water and it won't last much past lunch time without being plugged in! So for at least those two reasons Whitney can't even carry the thing around with her. Not what I'd call liberating. Oh, and it costs $3,955 depending on the dealer you purchase one from. So even if your insurance covers the device, an 80/20 coinsurance split makes a family's cost $791 plus applicable taxes. This device is what I'd call a Total Fail for my little girl.

I don't rant often because I don't feel it does anyone any good. But just in case the manufacturers of these devices and similar ones drop by, can I just say, seriously?!! These things are too limiting or they are too heavy and most of all too expensive for what you get. You are failing the individuals you are trying to help. Go back to the drawing board or get out of the hardware design business altogether! There I feel better.

A number of families in our support group have started a new approach to assistive communication. Get the hardware from one vendor and the software from another. In fact, there's someone who builds svelte touch screen hardware that costs a bit less than the M3 even after insurance. It weighs a shade over a pound, has a battery that lasts over 10 hours and is a third of an inch thick. You guessed it, the Apple iPad. Sure. You'll need a sturdy case, but even then, it'll be lighter then a jug of water.

Then you just need some software. And it's got to be good software. Many parents are raving about Proloquo2Go. It ships with 8,000 pictures and phrases and can be expanded to include more. It runs on the iPad or even an iPod Touch to be more portable. Proloquo2Go partners even sell the hardware and software together in bundles. That sounds pretty good.

This combo may not be the perfect solution for everyone. In fact I'm still concerned about a few things with Whitney. Will it be too complex for her to learn? Will a good case be enough to protect an iPad from the rigors of first grade? And will she end up playing Angry Birds instead of listening in class? I'll make sure we post the answers because I think this is the route we're looking to go for Whitney's future communication needs.

Whitney's New Talker

Last week Melanie dropped by Whitney's school for a while to receive some training on Whit's new assistive communication device. That way Whitney can bring it home on loan for the evenings and weekends and we can keep working with her.

The device itself is a simple board with a grid of pictures that Whitney can press to express different things. Whit's speech teacher programmed the device to say basic things like "yes," "no," "I want," "crackers," "Signing Time," "Blues Clues," "I'm mad," "I have to go the the bathroom," etc. Then she added a picture for each one so Whitney would know what each square says.

Whitney's birthday was last week and we had a few of the neighborhood kids over for a small party. So we had a few birthday phrases added to Whit's "talker." I shot the video above as Whit was practicing saying them so she'd be ready for the party.

So far it's her talker is still more of a toy than a communication method, but we're going to work with her consistently. Maybe someday this device will be a way that Whit will be able to open her circle of friends up to people who don't understand her signs or limited vocalizations. It's wonderful to have technology available today that makes the miracle of communication so much easier.

An Assistive Communication Device?

Raising a child with special needs always presents new ideas to consider. Lately I've been stewing a lot over assistive communication devices. These are gadgets that can be used by those who don't speak to play sentences aloud for them. I think the technology is terrific and there are many who benefit from this type of device.

The reason I'm spending so much time thinking about this topic is because several people at school have suggested one for Whitney recently. I guess I hadn't really ever considered this for my little girl because she and I and Melanie and the rest of our little family all communicate well using American Sign Language. Whitney gets upset a lot more often because she can't have what she wants than when she can't communicate what she wants. Why would I want her to have to learn yet another way of trying to communicate?

I asked Melanie that exact question and she had a good answer. What about all the other children in the neighborhood? Whitney can't talk to any of them. Other than us and a few other signers out there, she's completely cut off socially. Good point.

But can she really pick up yet another method of communication and use it effectively in her everyday life? Will it be a good fit for an active little girl who's already packing gadgets in her ears to hear? Would a device like this take the focus off actual speech skills? We haven't given up on Whitney speaking. Will this work any better than the Picture Exchange Communication System (PECS) program that Whitney totally didn't get? Who knows? I'm just full of questions and I'm seeking answers. I'll be sure to share what I find.