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.

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.

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.

Spring Time Off Track

Here in Utah where there are a whole bunch more children than there are seats in classrooms, school districts have taken up year round school. This involves a number of children attending different schedules, or tracks, that rotate using the classrooms. The result of this rotation is vacation time for the kids during unusual times of the school year.

Whitney is currently off track right now and will be for quite a few weeks once a week for spring break is factored in as well. This is tough for Whit because she misses getting out of the house and interacting with her friends at school. And I'd like to think that she misses learning new things as well. (Although she might never admit that.) But I've got a couple of things I'd like to work on during the break so it won't just be idle time.

First off, I really want Whitney to begin getting familiar with the Proloquo2Go software on the iPad. I'm hoping to have some time to practice with her while she's off school. And maybe Melanie and I can even get her enough practice time that she can use it in class when she goes back next month. We'll need to work together to get folders of buttons organized for the things Whit likes to say and then get her to actually use them, but I think we can pull it off. I'll make sure to report back on her progress.

Then next thing I'm hoping to prove is that Whitney's health is largely tied to the bugs she encounters at school. Whitney has continued to have a perpetual runny nose and cold. And while it could be allergies or sinus problems (we're checking those out too) my thought is that she's unhealthy because she spends so much time on the floor at school and then she constantly places her hands in her mouth. This is putting her in contact with all kinds of germs and I can't really control that at school. But now we can take the school exposure out of the equation for a few weeks and see what happens. If she's healthier then than she is now, we know we've found one of the major factors in her health. So here's hoping it works.

Of course, spring is also coming and being out of school will mean more than projects and experiments. I'm sure we'll also go explore the zoo and do some other fun things as a family. A little break from school will be productive and fun too.

Whitney's 2010 in Review

2010 was an amazing year of progress for Whitney. I was just looking back at all the milestones Whitney hit and all the adventures we've had. Whit started 2010 by showing us she could take the stairs all by herself. Then there was her worst tantrum ever where she had to get stitches in her eyebrow after hitting her head on a sharp toy. Lessons are sometimes tough to learn, but she doesn't hit her head on things when she's mad anymore, so that's progress.

In March, Whit started heading out to recess with the typical kids in her grade and loving it. This continues, by the way, and now the teacher's main concern is that Whit is having so much fun playing with the other kids that she might get careless and injure herself. That's a far cry from the little girl that used to rarely interact with the other kids during play time.

Then of course there were the continuing battles with ear infections and illness. Melanie and I really hope getting her tonsils out will help with Whit's overall health and ability to enjoy life.

In 2010, Whit lost her hearing aids and got a great new pair that she loves. She's back to wearing them full time as of last week since her recovery from surgery went well. In fact she's even been asking for them because she knows they help so much.

In late July, we hosted a ton of Whitney's friends at the annual 1p36 Deletion Support & Awareness Conference. It was great to see so many families and so many children like Whit who are making great progress. These children just don't care what limits doctors try to put on them. They surprise us with new accomplishments almost daily.

Then it was back to school and new adventures in first grade. Whitney learned to love being at school all day and she particularly loves school lunch.

In September, Whitney got a new baby sister. Baby Avery's arrival turned the world upside down for all of us but has been a lot of fun. Whitney loves to help out with all the baby chores. Especially patting Avery's back when it's time for a burp.

One of my very favorite of Whitney's 2010 accomplishments is her verbalizing. She now regularly says Uh-oh, uh-huh and my favorite Aaa-Eee. Which is her way of shouting, "Daddy!" I get this greeting a lot of nights when I get home from work. Whit knows it's an automatic hug from me. How can a dad resist?

It's been a great year of wonderful progress. I'm grateful that my little girl allows me along for the ride. She teaches me so many things about patience, persistence and determination. I can't wait to see what she teaches me in 2011. Happy New Year, everyone!

Uh-oh

Last night I was downstairs with Whitney setting up a show for her to watch for a few minutes. I must have hit the wrong button on the remote or something because the whole TV screen filled with snow. I looked at Whitney and said, "Uh-Oh!"

Whitney smiled and said, "Uh-Oh," right back at me. She said it confidently and perfectly and I couldn't help but smile.

Over six years ago when Melanie and I were still adjusting to Whitney's diagnosis and care schedule, we met with the folks in the local Early Intervention program to set Whit's first group of goals. Melanie and I considered different physical and speech goals. We were so new and had been told such limiting things by the doctors. I was trying to think of words that maybe in a year or so Whitney could learn to say. I've always thought it's funny when a toddler drops something and says, "Uh-Oh." And I thought it would be fun to have Whitney learn this as one of her first words. So I think Whitney's first Individual Education Plan actually had "learn the word uh-oh" listed. The therapist probably put it down just to humor me as a newbie special needs parent. As we learned more about 1p36 Deletion Syndrome and all it would mean to Whitney and her progress, other goals became much more important. But I never really forgot about that one first goal.

So as Whitney and I said uh-oh back and forth to each other last night I reflected on how much we've all learned and how far we've come. Whitney now expresses herself very effectively using ASL, which is something I hadn't even begun to consider back then. She walks all by herself even though the doctors told us she never would. She goes to school, plays with her friends, loves to read books (with me reading of course). She even paints! She's come so far and done so much.

And last night she told me "uh-oh." How far we've come, kiddo. How far we've truly come.

Our Little Communicator

Whitney has decided she wants to communicate through additional means besides just sign language lately. Since she got her new hearing aids she's been mimicking speech a lot more frequently.

For example, each morning when Whitney gets on the school bus, Melanie reminds Whit that she's wearing her aids and that the rule is "Don't touch." So now every day Whitney gets on the bus, sits down, points at her ears and mimics "don't touch" with the right number of syllables and vowel sounds and in a very serious tone of voice. It's pretty adorable. Now she's begun telling us "don't touch." All the time. She will also match syllables and vowels with "I love you" and "amen" after family prayers. Notes home from school indicate that Whit is doing all kinds of vocalizing and imitating there as well.

As she communicates we get to see more of her personality as well. One day last week Melanie went into Whitney's room to wake her for school. Whitney began to come around and pushed Melanie back gently and pointed at her door. She didn't need any words this time. The message was clear. "Mom, I don't want to get up yet." Just like any other tired little one would react on an early school morning.

Melanie and I love good communication with Whit and we hope it continues to improve. She's got so many things I know she'd like to share.

Chad Bingham: Assistive Communication Devices

Saturday morning conference attendees were treated to a great presentation of assistive speech devices and how they can help non-verbal kids like my daughter, Whitney. Here are some thoughts I captured during the presentation:

Speech devices can vary from the PECS system with pictures on index cards up to a portable computerized speech device.

With computerized devices the child uses it enough that it becomes motor memory similar to typing skills.

The goal is for the child to say what they want when they want int and have spontaneous communication.

A team can assess a child’s need for a device. This is often done through the school system.

Symbol systems have pictures. When the child presses the apple picture the device says apple.

Unity is the software in all PRC brand devices. It runs on the philosophy of vocabulary, stable icon locations, and a rule based approach to speech. It doesn’t have time-consuming navigation routines.

AAC devices don’t get used because:
• It’s not customized right
• The child doesn’t understand it yet.
• They seem to think it’s not important
• They get what they want without it. Parents speak for them.
• Kids don’t want to look different.
• They speak well enough that some will understand them without the device.

Use the device to:
• Request an action or object
• Get attention
• Greeting
• Asking for or sharing information

To encourage use:
• Make it accessible
• Load appropriate vocabulary
• Create a learning environment for the child
• Use appropriate activities

Use the language activity monitor at school. It logs usage so parents can see if the device is used at school.

The cost of a device that does speech synthesis can run up to $7,500. Insurance providers will cover up to 80%.

Speech Evaluation and the Snake at School

We took one of the major preparatory steps for more speech therapy this week. Whitney had a two hour evaluation with her new speech therapist. During that time Whit showed off her improving listening comprehension skills by following instructions. She was also very cooperative considering how long the evaluation lasted. Whitney continues to mimic sounds she hears, including speech and we're excited for her to get more help in actually expressing herself verbally. Now that the evaluation's done, Melanie and I are trying to set up a schedule where Whit will go for a speech therapy session every other week. Then in between, we'll work with her on the concepts that are introduced. Melanie was very impressed with the new therapist. She seemed confident and full of ideas on how to help little Whit express herself verbally

Speaking of expressing herself, Whitney practically tackled me at the door last night when I got home from work. She was verbalizing excitedly and signing frantically to me about something. But she was using a sign I hadn't seen her make before. She followed me into the house as I put my stuff down, repeating the sign over and over. Finally Melanie explained to me what Whit was saying. One of Whitney's teachers brought her pet snake to school to show the children that day. Whitney had been excitedly signing snake to tell me about the experience she had at school.

Seeing a fun opportunity to talk, I asked Whitney if she saw its tongue go in and out and if she got to pet it. She told me "yes" and "no" as I asked her about the experience. I really enjoy it when Whitney shares her experiences with me. It provides such a great window into her life that I don't get as regularly as I'd like. Needless to say, I'm very excited about some more progress on speech so the next time Whit has a "snake at school" experience I can learn even more about it.

More Speech Therapy

As I’ve mentioned before, all of a sudden Whitney is showing a ton of desire to speak. Melanie and I have seen notes come home from school about Whitney trying her best to repeat words in class. Previously, Whit’s tried to mimic vowel sounds, but now she’s trying to say the whole word, consonants and all. She’s not very successful yet. You can watch the wheels turn in her head as she’s trying to make her mouth do what she sees others do to make the sounds. It’s going to take some work to get all the way to actual speech. But now that she’s showing so much desire, it’s time to see if we can get some more work done in the area of speech therapy.

Melanie and I talked the other night about tracking down how many visits our insurance company will cover and then tracking down a therapist who’s covered in our network. We’ll start with that and see where things go. Whitney’s had a speech therapist before but she didn’t used to like to work with her at all. She was very uninterested and uncooperative, so we kind of focused on other areas for a while. But now that her interest has returned and she doesn’t need as much physical therapy, we’ll shift our focus back and hope for some actual verbal communication over the next few years. What a thrill that would be!

Little Brother the Speech Therapist

While Whitney signs well and is able to communicate her needs, Melanie and I haven't given up on the skill of actual speech. Whitney still vocalizes different sounds on occasion. And we've heard from other parents that walking and speech are somehow tied developmentally and seem to emerge together. Knowing this, Mel and I have tried to focus on speech since Whit is improving so much with independent walking. The only trouble is, Whitney doesn't really want to cooperate when we sit down with her and practice. "Say, aaaa." Nothing. "Say, oooo." Nothing.

But all is not lost. Whitney's little brother Liam is proving to be a pretty good speech therapist in his own right. For whatever reason, Whitney thinks it's pretty funny to mimic the things that Liam says. When Liam says thank you, Whitney will vocalize aaaaa oooo. When Liam says please, Whitney says eeeee. For right now it's just the vowels with no consonants, but she's getting the vowel sounds and the number of syllables correct.

Sometimes on a long car ride or something the two of them will sit in the back seat and mimic each other's sounds. It makes for a lot of noise, but Liam seems best able to coax more sounds out of his big sister. And with more work, I think we'll get close to actual words someday. I'm certainly hopeful.

The Speech Double Standard

We've got a double standard in our house that's been kind of troubling to me. Melanie and I are very strict about having Whitney sign for what she wants. She needs to use her signs to communicate the things she wants and then we're happy to help her get them.

Because of these rules, Liam, my little two year old boy has also grown up very confident with signing for the things he needs. In fact I think I mentioned that at a recent Deaf family conference, some of the teachers though Liam was Deaf because he communicates so well with ASL.

But now that Liam is two, Melanie and I are working hard to get Liam to speak. at dinner when he asks for something, we'll tell him to say please. He'll sign please. And we'll say, "No, you need to say please with your mouth." Liam often points to his mouth confused.

Our pediatrician isn't too concerned about his speech yet. After all he says a few words very well. And he communicates his needs quite fluently in ASL
We're just not sure how to help him understand that we expect him to speak as well as sign. Especially when it's a total double standard.

Therapy: Shifting Gears

I posted some time back that Whitney has been taking a few months break from physical therapy because she had hit a plateau.  Obviously we continued working with her at home, but since we she wasn't gaining much from the therapy we figured we'd invest that healthcare money elsewhere.

Well, it's time to shift gears.  Now that Liam is walking Whitney has an increased interest in getting on her own two feet as well.  So we've started seeing the physical therapist on a weekly basis with an emphasis on strengthening her legs and improving her balance.

Yesterday was Whitney's second visit on the new weekly schedule and it went great.  The therapist has said that Whitney is stronger and more capable than before we took our little break.  She is also getting better at bending and catching herself when she falls.  That should help her to overcome her fears, since her falls will be less traumatic.

It's also time for some new ankle braces.  Whitney has worn DAFO (Dynamic Ankle and Foot Orthotics, I believe it stands for) from Cascade for the past year.  They help partially immobilize her ankles to ensure that she's not rolling them in or out as she stands on them.  But now we've agreed with the therapist that it's time for a brace that gives Whit much more motion in her ankle joints.  So we're looking into a type of brace that will allow for the normal front to back ankle movement for walking but will also still prevent her ankles from sagging in or out.

She's going to have some new molds of her ankles taken next week at therapy and we'll see about getting the new braces ordered.  I'll post about the specific type as soon as we know more.

I'm thrilled that Whitney is ready to push for walking independently.  But at the same time, she seems to be tiring of speech therapy.  She's not tolerated her hearing aids very well lately and has actually damaged both her ear molds in the last couple weeks.  So we'll give her a bit of a break there and just work at home to keep her skills up in that area.  

By contrast she always wants to have her ankle braces on and she tolerates those well.  And she loves "playing" with the physical therapist so much that when it's time to go, she almost always throws a tantrum.  Hopefully, if she sees that she gets to come "play" more often it won't be so upsetting to leave.

But no matter what, we're working hard toward a walking Whitney!  My dream is to have her doing just what the little girl in the picture above is doing.  And I know she can do it.

Fun Therapy Ideas

Melanie is always looking for creative ways for Whitney to learn new things.  At the store last week she spotted a $.99 plastic recorder.  She figured this would be a good tool for helping Whitney work on diaphragm control and blowing.

Melanie blows into the recorder and makes it toot.  Whitney smiles and wants to try.  She's still learning.  Most of the time she tries to hum into it instead of blowing a true breath of air, but she's getting it.  She gets pretty proud of herself when she's able to produce a short toot of her own.

Another fun game is when Melanie puts her feet on top of Whitney's feet and has her stand.  She has to work with her leg muscles and keep her knees bent.  This takes a lot of muscle strength to keep balanced.  After practicing this activity for a couple of months Whit can stand for up to 15 minutes.  She's getting much, much stronger.

Playing with fun things and trying to say their names is one of Whitney's favorite speech therapy activities.  For example, we get out the bubbles and blow some.  Then we say bu bu bubbles.  Whit usually laughs and tries to say the bu sound.

Making learning fun seems to work well for Whit.  Remember that therapists don't have a monopoly on effective, fun therapy ideas.  Involve a bit of learning with your child's favorite activities and you just may be surprised at their progress!

Growth of All Kinds

Whitney the Valentine "Hug a Bug"

I've got a few more odds and ends I wanted to comment on this week.  First of all in Whitney's 4th birthday post I forgot to mention her actual height and weight.  She is now 39 inches tall and weighs 24 and a half pounds.  As I mentioned, this puts her right at average for height and off the bottom of the charts for weight.

Melanie and I have noticed that Whitney is beginning to pick up weight more quickly though.  Whit was closer to 21 pounds in last summer.  Many -1p36 parents have mentioned that around four or five years of age the issue of weight changes from too little, to not letting the child put on too much all at once.  I think we're starting to see this with Whitney.  She is becoming much more daring about the food she tries.  The other night I was having a green salad and Whitney actually asked for some of my lettuce and ate it too!  I was shocked because most greens have a texture that she absolutely hates.  Melanie and I have also discovered that Whitney will also eat most anything so long as it's covered in sour cream.  Whitney even asks to have sour cream by itself.  We certainly don't let her just consume mass quantities of it, but even a little sour cream will go a long way toward putting some weight on her.

Whitney has been seeing a new speech therapist the last few months.  It's funny how she responds differently to different therapists, but things have been going better with speech than ever before.  She still faces a long road before actual words come out, but Whitney vocalizes a lot more on demand.  She also vocalizes during playtime and with her brother a lot.  She's working on quite a few more consonant sounds such as "lalala" and "bababa" and "yayaya."  I also think it helps to have someone like her little brother to talk to.  And I'm pretty sure Liam speaks the same language.  He's doing those same sounds, as well as "dadada" which I'm particularly proud of. :-)

We had a massive snowstorm the day before Valentines but that didn't stop Whitney from going out in her new walker to deliver Valentine cards to all of her friends in the neighborhood.  Her new walker's larger tires did quite well in the snow.  Whit had quite a bit of fun stomping in the snow and slush.  We'll have to go out there with her again soon, because she didn't really want to come in when all the cards were delivered.

Whitney has also been surprising me with her comprehension of the world around her.  One example is The Little Mermaid.  Whit had seen the movie only once before our trip to Disneyland.  And I mentioned how she got to sit with The Little Mermaid and have her picture taken on our trip.  Well, Whit understood very well who she was posing with.  And since we've been home, she's decided that this is now her favorite movie.  When she signs fish we know that she's not asking for Finding Nemo, she wants to see her new friend The Little Mermaid.

Oral Motor Development Exercises

Hugs for little brother

Whitney is working hard to gain some speech skills and her speech therapist has given us a list of some great play activities that will improve oral motor skills:

Use straws to suck liquids
Blow bubbles in liquid with a straw
Straw painting (blowing paint with a straw)
Blow bubbles
Blow up balloons
Blow lightweight objects across the table (cotton balls, feathers, glitter)
Play with Whistles and Horns
Blow a pinwheel
Chew gum and blow bubbles
Chew tough food items (licorice, taffy, beef jerky, bagels)
Suck and lick popsicles, lollipops, or ice cream cones
Slurp food without utensils
Put on purees like lipstick or chapstick (ranch dressing, applesauce, yogurt, pudding)
Apply lipstick and make kiss marks on paper
Use a vibrating toothbrush

Some of these sound pretty messy, but they should help to make little ones like Whitney to be more aware of their mouths and how they work. I'll be sure to post some pictures of some of these. Can't wait to have Whitney try wearing ranch dressing as lipstick!

Raspberries and Speech Acquisition

"Does your child blow raspberries (spit bubbles)?" That's a question that keeps coming up Whitney's developmental surveys. I always wondered why teaching my kids to spit had any developmental relevance. Whitney has never learned this skill even though my son, Liam, is fast becoming a pro at it.

It turns out that spit bubbles are very important. They represent one of the the child's first efforts control air movement. It's the blowing part that's relevant and without it speech can't properly develop.

My wife and I have seen this at home. We've been working on "buh" and "mah" sounds. Whitney will mimic the mouth shape and lip positions for those sounds, but no actual sound comes out. That's partly because no air is moving. Blowing raspberries or blowing bubbles through a straw is one of the best ways to teach little ones to get that air moving.

So with the blessing of my daughter's new speech therapist and the help of my infant son, we're going to be honing our spit bubble skills. Should be a fun time! By the way, this marks the first of many times to come when my little son will be teaching his older sister a new skill. It figures that the life skill of spitting would be first!